Thank you for doing this video. I'm in the hospital right now was just diagnosed with UC about an hour ago...And your video was awesome...Very informative and helpful.
amazing! sorry about your diagnosis, but hopefullly you find what works for you and you can manage it well! I know it sounds scary at first but once you start to understand it all, you'll realize its not too bad if you make good decisions and change your lifestyle a bit!
I just came across this video and I just wanted to let you know that I appreciated it so much. I was diagnosed at 15 and am so embarrassed of my disease even after having it for 3 years. I love how open you are and it makes me realize that there is no need to be ashamed. Hope all is well 💜
Yay! so happy you feel this way! Yes, there is definitely nothing to be ashamed about. every time we talk about it, share our story, and acknowledge it, we are breaking the stigma that this is a gross topic that no one wants to talk about. You don't need a broken arm or broken leg to get help. Just because you cant see your illness, doesn't mean you dont deserve to get the help and compassion that you deserve! :D Stay strong Meagan!
I was diagnosed 2 years ago, It can be hard when people don't understand that it can be really serious even though it's a hidden illness! It's nice to see people coming together to help each other. Soon i'm going to start videos on diet plans etc for Colitis. Keep up the good videos :) x
I have UC and I've been bleeding for almost a year: they put me on prednisone which didn't work... It's a mild case though but still very tough to deal with. I'm glad you posted this and had enough courage to talk about it.
So, I had my first flare in December 2016, when I was diagnosed with Ulcerative Colitis. When I watched this video for the first time, I remember thinking "wow, I am happy I don't have this many issues with treatment in the hospital, like you did..". The medication did its job and it was only for temporary use. But a few weeks ago, I got a fever with a lot of diarrhea. I didnt think much of it, but after a few days I suddenly woke up in the middle of the night. I had a lot (and I mean A LOT!) of blood in my stool where I almost passed out and got really nauseous, was really dizzy. Next day, I called my doctor and after the weekend (where I lost a lot more blood, feeling pretty awful with a lot of pain) I got a colonoscopy. Within a short amount of time, my whole colon was severely inflamed and my bloodlevel was very low.. So they said I should stay in hospital. Blood transfusions, iron and prednison was given. They were thinking of removing my colon so I got really emotional. Last chance was the Infliximab/remicade. Finally it worked! I got sent home and am now recovering.. God, I did not see this coming! It feels good seeing that I am not the only one who went through this.
+Isabelle_fitnessjunkie sorry to hear you had to go through that. I know how scary it is, but I'm so glad you were able to get Remicade and that it worked for you!! It has literally saved me, and I'm living most of my days symptom free! Hope you recover well!
Effie, thank you for making this video! I'm currently going through the exact same things! Literally our stories line up almost to the date with hospital stays and blood transfusions! It's sorta comforting to know that I'm not the only one who truly know what this is like. Thank you for raising awareness. Maybe once I'm feeling a little better I'll have the courage to tell me story too! Stay strong!
Ally, that's so crazy!! I really hope you're starting to feel a bit better now. I know how hard the last couple of months have been, and we're definitely not alone! And yes, you should definitely share your story when you get a chance. I found that the more aware people are about what's going on, the easier this is to handle. Keep your head up, and work on finding your 'new' normal :)
Hi Effie! While I don't have Ulcerative Pancolitis, I was diagnosed with Crohn's Ileitis about 2 weeks ago. I really enjoyed your video and sub! I hope all is well and you are making positive progress with you disease! Look forward to more videos.
I also have uc and i wanted to tell you that it is vital to continue whatever you were doing on your life before uc.YOU CAN CONTROL IT.It is somethingvthat comes from the inside i have faced twice this year and i was diagnosed for the first time this year.You'll notice that whenever you are stressed or sad you will be facing symptoms.Try to work on the way you see things.I was an athlete for 8years (hard working) and i lost 15 kilos(muscle) in a year.But i dont give up and none should.I will control and you will too.
Hello my greek friend! Είμαι και γω Έλληνας πατριώτη! Βλέπω τέτοια βίντεο, γιατί έχω ακριβώς τα συμπτώματα της ελκώδους κολίτιδας ή της Νόσου Crohn. Βέβαια εμένα ο μπαμπάς και η γιαγιά μου έχουν IBS. Και άρα μου λένε ότι έχω το ίδιο επειδή περνάω κρίσεις πανικού λόγω αγχώδους διαταραχής και κατάθλιψης. Ότι και να ναι...Τα συμπτώματα μοιάζουν πολύ και είναι απαίσια!!!! Όπου και να σαι υπάρχουν συμπατριώτες σου που σε νιώθουν...Έπρεπε και στην Ελλάδα να βγαίνουν ανοιχτά και να μιλάνε για αυτά τα ζητήματα, ώστε να στηρίζουμε ο ένας τον άλλο....Take care & Look after yourself!!!
Thanks for posting. I was diagnosed when I was only 7 years old. It's been a rough journey but I have gotten much better. The pain that comes with UC is unbearable sometimes. I'm happy to see that other people are sharing their story, I was terrified when I was first diagnosed. Being 7 I wasn't really sure what was going on with me. I became anemic and very ill. Wound up in the hospital for days. The medicine made me feel sick. We tried many medicines until we found the right one. It's been almost 11 years. Hope you are feeling well.
DopeFreshNation Organ pain is the worst in my opinion. I had liver issues once as well as my colon and I would double over no matter where I was. The only thing aside from the pain meds that helps me during a flair is a super warm blanket out of the dryer or heating pad over my abdomen to help take some of the edge off.
I am glad you're able to stay positive, such an amazing young girl. You have given me the strength to try and change my outlook of my experience and life in general. I wish you all the best and a healthy life.
Hello Effie! I found your video after receiving a diagnosis of UC yesterday. Thank you so much for sharing your story, it is truly appreciated. I feel like it’s a little easier to wrap my head around my diagnosis after hearing of your experiences. Wishing you all the best
Hey I really like your channel and I appreciate the advice on UC. I am 20 and was recently diagnosed with it and have struggled to cope with it myself. The weakness, tiredness, restlessness, constant intestinal pain, and people saying I have explosive diarrhea can really get exhausting so I really appreciate your video. To help take my mind off my sickness and pain I created an iPhone game called Box of Lies that is a 2 Truths 1 Lie Trivia game if anyone is interested. I just thought I would mention it because it would really make my day to see others playing it and also I have been extremely stressed out about how I am going to pay for my medical expenses on top of my living expenses on top of my college expenses since I still can’t hold down a job but if you are not interested that is fine. As for the people in the comments section, please keep sharing your stories as they are really helpful. And Effie, keep posting great videos. Have A great rest of your day!
hi effie. Glad to hear you are past that scary stage, which is also a lonely feeling. First and foremost we UCers need to let newbie UCers know: "You Are Not Alone". And YES, very helpless feeling. STAY STRONG AND FIGHT. I've had UC for 5 yrs. Doing great now compared to my onset. Short explanation, I had it really bad. Went through all the emotions, crying, anxiety, feeling like nobody understood me or my feelings. Went through 2 Doctors, and many meds.. etc. Here is what finally works for me and what I'm on now: (2)500mg Sulfasalazine daily and (1) 50mg Mercaptopurine aka (6-MP) daily. Supose to be both 2xs a day, but me being stubborn or positive I cut it back slowly myself. As I said, I'm still remission doing great. Thank you for sharing your story. As many of us long time UCers also know, Everyone of us will react to different meds. Again, don't give up anyone. You will go through a ton of F*#d Up emotions And that is normal. Love and Support to all. Stay strong. www.ihaveUC.com
I am extremely impressed with the timeline in lower right hand corner. I think you are doing a great job documenting your illness. Inspiring videos very professional.
Please please please make more videos! I was diagnosed 1 month ago and I've been so scared because I don't know what to expect and what's normal. I had an appointment with my GI a few days ago and forgot to ask certain questions and I won't see him for another 3 months. The way you explain everything makes me relax a little. It's never a horror story. Some people can really scare you but you just know how to talk about it. I don't know if I'm making sense. Thank you for these videos and I really hope to see more.
UC is all about perseverance. Stay strong. It is an isolating and demeaning disease, but only if you let it be. I hope your symptoms continue to stay in remission. My case went from nonexistent at age 30, to having a j-pouch at 33 years old. I saw myself go from a lean 165 at only 5'6", down to 135 at the worst. I have now leveled at a healthy 150 and am able to work out like I did before becoming ill. It is along road but so worth the peace of mind of not having to worry about a flare and the terrible poison they give you for symptoms. Great video.
my mom was diagnosed with this a year ago.. and it's awful.. thank you for sharing your story. means alot to me. I'm trying to look into different stories of other people's experiences.... thank you for your honesty.. you are brave and beautiful and amazing.. xoxo
Lady Luck Tutorials Lmao basically for me took mad bloody shits pretty gross. Lost around 30lbs and I weighed around 120lbs I think it was because I was barfing everything I ate also pretty gross. Finally went to a specialist after 2 months because I was too lazy to go I know it sounds stupid, but I was kind of depressed at the time so I didn't really care that much. I was the diagnosed with Ulcerative colitis after I did the colonoscopy. Legit shit myself in there because the lady wouldn't let me go to the washroom. But, I already knew how to fix myself for a couple hours the trick was to shit but don't eat for a day or so. Only eat when it was a priority. So that's how I knew if I went to the washroom it would stop hurting, but after I shit myself a little she let me go. I didn't have to stay at the hospital for weeks like she did for me it was only for 30 minutes lol. After we went to the clinic to get those steroids for my colon pretty much exactly what they told me they told her. Then later on we did got a approval for this 3000 dollar medicine called entyvio which I'm very thankful for. And after that was about it. I still eat like shit so I probably should fix my diet, but I'm pretty picky so.
Hey there thanks for the video! I'm from London and have recently started to have the same symptoms as you, although not as bad at my worst I was going to the toilet 6 times a day. I just wanted to say thanks for sharing and it really made me feel better that I'm not the only one going through this and that you seem to be doing really well, and I'm looking forward for future videos 👍
+David Burr I'm really happy my video made you feel better, you're definitely not alone! I am doing a little better every day, and I hope you start to see some improvement soon, too! (I will have a new video up this week so keep an eye out!)
I was diagnosed with Ulcerative Pancolitis right after my 18th birthday even though they tried to find what's wrong for a year and because I wasn't having bloody stools they didn't think about UC/UP/Chrons. After they diagnosed me they put me on Medrol (steroids) and Salofalk. Last October while I was abroad at uni I started feeling really bad again even though for the past 3 and half years I felt perfectly fine. I go to university in Greece and I was feeling so bad that my dad had to fly to Greece and take me home in Cyprus because I couldn't even walk. I went to see my doctor and he put me on Asacol only because he thought that 12-15 bloody stools a day can be fixed without steroids, little did he know, though... A few days later I was put in a private hospital where they are giving me painkillers, Asacol & IV steroids but I was getting worse by the minute and they would do nothing. After 2 days there I asked to be discharged and they had me sign that it's against medical advice and I went to see a doctor who has studied in Israel (it's a thing in Europe to look for doctors who studied there, they seem to be the best) because he wasn't from my town, he introduced me to my current doctor. She basically saved my life. If I wouldn't have signed those papers and go look for help elsewhere I would've died. As soon as I met this doctor she put me in the hospital with 400mg Prednisone IV, 4g of Meclozine and Asacol enemas + Iron, Potassium & Proteins IV and some injections because I wasn't walking and my muscles were starting to atrophy. Because of the dehydration, they couldn't find my veins to take samples to check my levels so after over 50 needle pitches and my hands becoming swollen and really purple-ish - black they started taking blood samples from my legs. After two weeks in the hospital, multiple blood tests, Sigmoidoscopy and unbearable pain, they let me go home, where, as you already know, the pain didn't stop because Prednisone is a bitch that it may fix our Colon but it fucks our bones. My doctor was afraid that she will have to put me on Imuran, but it seems that my body it's pretty good on Meclozine. I really wish that one day they will find a cure for our disease or at least that fewer people will end up having it. I hope everyone who has to deal with this disease will have more better days than bad days. Never give up guys! You are the boss, not the disease!
It was great hearing your story. I can't believe you had to go through all that in such a short time span. I was diagnosed with UC when i was 7 in 2003 and I've taken a plethora of drugs. In 2014, I had a similar experience as you having severe cramping along with bloody and loose stools. I was taken to the hospital and put on remicade. And because I'm also anemic, I got iron infusions as well. I've had a lot of experience with UC and I hope everything settles down and you can live a normal (kinda) life. Hope the remicade keeps working for you. Goodluck!!!!
I was diagnosed about 5 years ago now. Most of the time I've got it under control, but there are definitely days, weeks, and sometimes months that are pretty damn hard to deal with. Keep your chin up and listen to your doctor everybody, it will pass in time.
Im glad to hear your doing better! theres so many people in this world who deal with this disease everyday, I have been effected by it as well and have been diagnosed sense October of 2015, I hope the medication they give you help you, its a hard disease to get control of especially when everybody's body is different, its been 9 months... i have been on steroids, imuran which nearly made my body toxics however that does not happen to everyone, mezevant? im not exactly sure, however I still deal with abdominal pain when i eat.. most days it never matters what i eat it affects my digestive system, I am also Vegan, the pain that aches thoughout your body, feeling tired every moment.. ect.. just know theres so many people out here who are willing to talk and listen! Good for you for doing a video theres so many people out there who have a hard time understanding what there spouse or kids go through, so thank you for being so brave! i also do know a lot a lot of people who take remicade and are having great success just remember it can be a long path to get it under control, even mine still isn't to this day. So good for you , for what you are doing keep it up keep positive its the only thing that can hold us up !
Thanks for sharing your story. I was diagnosed with UC January 2015. Mine was a battle to figure out why I was feeling how was feeling. I thought I has the never ending stomach bug. It was 3 weeks of suffering and losing 25 lbs before I got admitted to the Hospital. Thats when I got diagnosed. Also along the way I had developed a swollen ankle which took a few specialist to find out that it was an edema nodosum which was painful. I am on daily medication, but still have my ups and downs..but mostly ups thank God.
I had remicade for a couple years and asacol along with that. Only taking asacol now, it's been 7 years since my diagnosis with UC/Crohns. Currently having a little flare but haven't had it as bad as so many like yourself. What I've found over the years is to be as consistent as possible with the food you eat, the GI deals directly with foods so it's paramount to monitor the foods. Dairy and gluten have been cut out completely. Yes gluten, I've found when I eat it I'll flare, and I hadn't had anything gluten until vacation a few weeks ago and guess what started flaring. I've also found cannabis to be beneficial in reducing inflammation, when I medicate with it I can feel my body cooling down loosing the inflammation. Overall making sure your body has the least amount to worry about (immune system) is key so that the GI immune won't get over stimulated
+Effie Siamalekas I can totally feel what you're saying... ( crohns' disease ) fifteen surgeries. I have a picture of my abdomen on G+ ) Keep up the great positive energy. I would like to conversate sometimes.... (My longest hospital visit was 11 months) I can relate to everything what you're saying. (isolation,bloodtransf.,iv food,etc etc) Keep it up .... I really appreciate this ... I was 55 kg. , now I'm 95 kg. (I had remicade, I have Humira now)
+Aiden McAteer it's been almost a year now and I feel great! I always forget I have colitis until the morning when I remember I have to take my medication :) I hope you're friend is doing okay! It will get better
I was diagnosed with UC today after 4 months of symptoms. I have been on steroids since my initial colonoscopy and they have been very effective in controlling the bleeding. However as the dose decreases the symptoms gradually return, just as you said. I'm starting on Humira next week which is an immune-suppresant so we'll see how that goes. Nice video - I hope all goes well for you in the future. Thanks for posting.
Hey Effie, over here in Calgary my 10 year old just received crohns/colitis diagnosis and it's been a mini nightmare. Thank you for telling me your story on here, I feel as a parent it will help me know a little bit more about what to expect and look out for. Hang in there beautiful girl, and best wishes as you endure this journey.
+Fyred Up Thank you! I know it can be so hard as a parent of IBD. At some points, I swear my parents were having a harder time than I was. But I honestly could not have done it without them. The best advice I can give you, is that you have to try to stay positive for him. Watching my parents worry was almost worse than the physical pain I had to endure sometimes :( Stay strong, and i hope he gets better soon!
hi i'm ava! a few months ago i found out that i have a tumor, ulcerative colitis, chronic pancreatitis, autoimmune disease, and clinical depression. so at least you aren't gonna die within two years💗💗
As a nurse, I am so happy to see you have such a great support system, you have gone through so much and I can't even imagine how much pain you experienced. I am so happy to see that your treatments have been effective! I hope you continue to get better and thank you for making this video, it's awesome that you are willing to share your experience! Stay strong beautiful!
Hi Effie!! I'm so happy that I came across your video!! Im 18 from Australia and also suffer from ulcerative colitis, I got diagnosed about 2 years ago now but was dealing with symptoms 2 years before that, loved your video !!
I just got diagnosed with UC. It’s terrible.Thks for doing this video.👍🏻 Its nice to hear other peoples stories. You know your not the only one going through it. It kinda gives you hope.
I was diagnosed with UC two days ago I have been in and out of the hospital for the past month and have been battling this since I was 7 years old. They told me I had diff-c but I didn't it turned out my flare was so bad my white blood cell count was 23,000. I got prednisone, omeprazole, and lialda to take everyday to force my body into remission which I'm so excited for!!!! I can't wait. It's honestly so funny how people take pooping normal for granted lol for people like us it's like a god given gift because that's a sign of remission!!!!!!!!!! Which means no pain anymore.
Thanks for sharing your story. It was interesting to hear a first hand account of how the disease can effect someone. Thanks for uploading. I hope you feel better soon. Take care.
Hi. I was diagnosed with UC about 2 years ago and have been suffering a flare for a few months now. Luckily its relatively mild but its still very difficult to deal with. The worst part was pre-diagnosis. No one knew what was happening with me I was having bloody diarrhea stools 2 to 3 times a day for weeks and lost about 60 pounds in weight. I wasn't able to go walking which I love to do. I wasn't able to enjoy Christmas or New Years. I felt miserable all day. The best advice I can offer to anyone suffering from this is to get prescribed the mesalazine medication and for Gods sake start eating more apples and bananas as they help your digestive system.
typhoon2401 , I've just been prematurely diagnosed with Crohns and I had blood in my stool every day. I was going to the bathroom upwards of 15 times a day and lost 70 pounds in 3 months. I now am unable to gain weight, hardly eat and the doctors still haven't given me a for sure diagnosis yet. Hope all is well now
Great hearing your story, I'm 16 and I was diagnosed in March. I like hearing about other people's stories, makes me feel less crazy and lonely 🙃. Hope we can all get into and stay in remission for a long time!
Hello Effie! I was diagnosed with UC a couple years ago. it's insane how time flies. I could relate to you on so much. I wish I was not on Prednisone for as long as I was. I gained so much weight and it messed up my body quite a bit! =( But on the bright side I feel soo much better... except recently I have had some strange pains on my right side which kind of freak me out! Well hey, there is so much I could say... But I don't feel like over burdening you with a novel! Send me a PM or something some time! =) Thank you for your time! Jeffrey.
I honestly admire how positive you seemed in your pictures, I know when I was admitted to the hospital I was depressed as hell and it didn’t help that the nurses kept messing up my food orders so they would be feeding me food that made my gut act up. And now my 5ASA pills aren’t working so I have to be switched to remicade and I’m a bit nervous about it “compromising my immune system” as my GI puts it, because I still have to go to school and flu season is coming up. It’s been a long journey for me too but seeing you like this gives me hope that I’ll soon be able to feel better and not have bloody stool and enjoy some of my favourite foods including a birthday cake, which would be nice to have on my birthday lol
great videos ! ☺way to stay strong throughout everything. I love that you've chosen to be open and honest about your journey and the disease. I think it's so important and admirable to have the courage to do that and help inform others -especially those going through similar things ! ❤
Having a colonoscopy this Friday, Ive had some occasional blood and stomach cramps that are on and off as well as some bowel changes - doesn't sound nearly as bad as what you were having, but I guess UC can be mild and severe (hell maybe it's IBS and hemorrhoids) Honestly just hoping for anything BUT cancer at this point haha, props for being able to stay positive!
Thanks Effie for your video. I have just been diagnosed with Colitis via Colonoscopy, and still have to go see my Specialist for results on Biopsy and Blood Tests. Sounds like you really went through a rough path. Mine isn't so severe, but still a shock to the system. Keep doing the videos you did an excellent job. Thanks again C
I have had this since Nov.1995...Pentasa PREDNIZONe, sulfadiazapine etc. Was in hospital for 5weeks! Good days and some bad!.....Thank you for your videos!
Good video Effie! I've been diagnosed with UC in 1996, since then: ups and downs, twist and turns, very good time and very bad time (not necessarily related to the disease). Now at 46, probably around the age of your father, I can tell you that I don't regret anything, even if, let's face reality, the disease took an high toll from me. Anyway you're young, you're having the right attitude and the research is making great steps! Be serene! Greetings from Italy!
+Carlo Defilippi I completely agree! I'm learning so much about myself, and I don't think I would have ever taken the time to learn if I didn't get a chance like this. The right attitude is definitely a huge factor with all of this :)
Big struggle to get DIAGNOSED as I don't bleed until I'm into Pancolitis territory. I am not in remission with ENTYVIO. No side effects! For anyone suffering or being UNDERTREATED, know that switching from a GI to an IBD SPECIALIST at a hospital IBD research centre, was a game changer. (They do the Calprotectin test, which was another great thing, to get diagnosed and have the inflammation MEASURED.) Best of luck!
Hi Effie, thanks for your video, I went through a very similar experience 10 years ago - prednisone, 3 Remicade infusions and then I was on Imuran for about 4 years. I came off it around 5 years ago. I'm really well now, I worked out what helps and do my best to keep my health in check. All the best and thanks again x x
+Bella Halcrow good to hear! I would love to get off of imuran soon, though my doctor says not to try that for a few more years. Feeling great so I can't complain, just worried about any long term effects the imuran may have
Yeh I wasn't keen on the list of side effects for Imuran either! It's great that you're feeling well now. As I said I found what worked for me - mostly doing loads of yoga and eating right, plus quitting stuff that made me unwell (eg stressful jobs). I tapered the Imuran off really slowly. Are you also on an anti-inflammatory drug, can I ask? I was on Asacol for 9 years.
yeh, do whatever you need to do! Everyone will understand and be supportive. Sounds like you have a good support network with your family and friends so you are sure to have success! Eat well, read up and find what helps you. My doctor was supportive when I said I wanted off the Imuran. Sometimes you need to be firm though, that's what I found. They can tell you all the stats and percieved risks, but in the end it's your decision. A supportive doctor was key in my recovery, too. He's awesome! I hope your medical team are good.
thanks so much for sharing this. i was diagnosed 5-6 years ago when i was 11 years old. prediagnosis was the worst, i had to have 2 biopsies (colonoscopy & endoscopy) and 3 different consultants and by that time i was severely anaemic & had to have a blood transfusion. now, years later, im managing. i have to have a yearly biopsy and monthly blood tests while taking 4 different types of medication. I've learned what works/what doesn't with my body on flare ups but.... well, its nice to know that ur not alone and others are struggling! would love to see a diet video? i can never hear too many opinions about what works/doesnt.
I just found your channel and it sounds like you had it really badly really quickly. I was diagnosed in April, but for years I had been having issues that doctors kept thinking was my appendix because the area of my colon that was mostly swollen was near my lower right hip! When we finally figured out what it was my gi doctor put me on a 30mg taper of prednisone, it was 30 daily for 2 weeks, and then down by 5 weekly, and I was also put on omepresol to protect my stomach from getting ulcers from the prednisone, and a drug called sulfasalazine, and things have been going for the most part pretty good, but this week is when the prednisone and omepresol are finally wearing off, and now I'm having an allergic reaction to my sulfasalazine. I think I'm going to be put on mezalamine next and hopefully things turn out good! And plus this pill is only a once daily pill!
+kassandra young yeah it was very quick and unexpected. A lot of people say they had problems for years before being diagnosed, but I never had any issues, it just came on so quickly! It's good to be finishing the prednisone! Good luck with the mezalamine :) I hope you find something that works soon! 😘😘
Thanks for doing this video Effie, I've spent the last 5 days in the hospital. I had my Colonoscopy biopsy yesterday and was diagnosed with Ulcerative Colitis today. Its been alot to take in today and think about. Learning that there is no cure for the disease i can say i cried a lot today. But it sounds like you had a much more severe case then i did as i didnt need any blood transfusions. I was prescribed a medication that can hopefully put it in remission and to sleep(i hope) its still all very early and im still learning a lot about it and the weight loss is very drastic. its quite a big change in my life an was very sudden and unexpected.
+Yoshi Prime hey Yoshi! I'm sorry to hear about your diagnosis. It is definitely a lot to take in at first. Do your research, ask lots of questions and get to know your body and you will be okay! Send me a message if you ever need to talk to someone! :) Hang in there.
Were you able to return to work in any way? I worked for a moving company prior to getting this diagnosis yesterday. I havnt been back to work in the last 2 weeks since this all started and from how things are going I doubt I will be able to do any work that is so physical like that. I'm so weak now. I'm trying to figure out what to do with no source of income.
I was pretty lucky that i have my own company, so i can work from where i want. I didnt work for the first 6 months, but eventually got back into it slowly :) You will soon, too!
I have colitis two and the same symptoms when my stomach was really bad I went to children's hospital in Vancouver and they were no help because they told me to eat everything that was bad for me and hurt my stomach the only thing they did do was diagnosed me and give me a colonoscopy. when my stomach was bad I was taking a prednisone in the morning and at night at night it made me Hallucinate I was taking 8 kg of prednisone.So that was kind of scary it is nice to see other people talking about this and I am hoping soon someone will find the Cheer to thisI was only nine when this happened so it was kind of a scary I'm now much better. never stop trying to help yourself cause everything will go your way if you try,
Thanks for watching Ab! This video hardly explains the disease and effects of UC, but I'm glad you got something out of it! Keep an eye out for my next video where I will go into more detail about what Ulcerative Colitis really is :)
Colitis is easily the worst desease ever. I had a flare up for the last 8 months. I’m just now feeling better and having about 5 bathroom trips a day. I’m single and this desease makes it impossible for me to date or even go outside. I’m only able to go to work because I prepare and have to for the insurance. During a flare up I go to the bathroom about 20 times a day. Trust me when I say that this desease is the worst.
Hey, thanks for sharing, great video for just winging it. I was diagnosed about two weeks ago but have been having symptoms for about a year... also have been in and out of the emergency room and GI clinic for about a year too, took them this long to get a diagnosis. I've been reading a lot and so far I've been hearing, and reading, that coconut oil, pineapple juice, cabbage, hemp, chlorella, and kombucha tea really helps! Hopefully they work for you, I haven't seen too much difference. Also, I think the medication they gave me makes things worse and cannot see my doctor for another month..... good luck to you
Good grief...what a horrible experience and your poor parents must have been scared too..Ive got my CY on Wed. Recently had Diverticulitis..better now but have to watch my diet. Having the CY to check me out. I think I've got a lot to thankful for after watching your experiences. Best of luck from France x
been having problems for 8 years, parents finally decided to take me to the doctor and now I'm going to be tested to see if I have Crohns Disease or Ulcerative Colitis
I was finally diagnosed with ibd after years of running from doctor to doctor with the same problem. All of them either said "just cut certain things from your diet" , "I'm sure it's just a virus" or "you have ibs". I was in and out of a&e 5 times a week and each doctor SAYING it was just me being dramatic. I was completely sick of this and my movements were just getting worse. Until one day where I literally couldn't get out of bed. The pains were terrible and i was constantly sleeping. I went to a&e and they said I was extremely anaemic. This was because of how much blood I was losing. They said they would refer me to a gastro surgeon... which never happened. They ended up referring me to a phaediatrition and he decided to make fun of me and my condition. I was sick of it. I got up and decided to go to a private hospital. I was lucky. They referred me to a gastro surgeon finally and they said I would have to wait three months for a colonoscopy. The pains just got worse and then finally it came to my operation. They took a biopsy and it came out as inconclusive but they said I have ibd. But they couldn't point out if it was crohns or cholitis. To this day I still think it's cholitis but luckily I'm in remission and I'm doing so much better.
Your boy friend is so sweet. Get better soon hopefully this shit goes away soon💩. I've been dealing with something similar only no blood. Keep your hopes up.🙏🏼
Omg just clicked on your video and my instant reaction: WOW she is amazingly BEAUTIFUL :) hi this is Tufail from the UK. Hope yoy are well and having an amazing day!
My story is so similar to yours. I was just diagnosed 2 weeks ago and my life has changed my life. I love your channel and you’ve given me hope, thank you ❤️
I was dignosed with ulcerative colitis 3 years ago. It has been a long and different journey. What I have learned is that the best way to heal your body it to eat organic fruits and vegetables, grass feed meats, wild caught fish. I do not eat dairy products, sugar or processed foods. These are extremely toxic to our bodies especially if you have UC. I have not gone the traditional route. I go to a homeopathic doctor who gives me tea's that I drink with my clean diet. I no longer bleed. I know that I will eventually heal my body completely. The key to healing this horrible illness is to heal your body, mind, and soul. Best of luck on all or your journey's. May you all find what works best for you.
Effie I am Greek too. I live in the UK though. Have similar problems. But doctors said that i have IBS, due to signs&symptoms and the family history. I am concerned though, cause i have not done colonoscopy yet. During my stay in the hospital my CRP was 20. Not to mention that in 2018 had symptoms 3-4 times. I frankly struggle with this awful situation. Cramps, diarrhea, gas, pain, fever etc are horrible. I feel terrible, cause i think that i can't live normally and that is an anathema in my lifetime...Along with the above I face panic attacks, had been diagnosed with depression and anxiety disorder. Also D3, B12, C etc, are Vitamins, that play significant role in our gastrointestinal tract and I have deficiency, shortage of them. Take care & Look After yourself. Our Diet, lifestyle and stress are important factors as well. I am praying, wishing, hoping one day to overcome all of us those obstacles !!!! Being Healthy is the Alpha and Omega!!!! I understand, that the conditions might be chronic but Περαστικά μας και Καλή Ανάρρωση!!!!!! Taking the appropriate medications, following the proper diet and the instructions of our GP, gastroenterologist or/and psychiatrists the conditions will remain "hidden and calm". Thus, are going to live a healthy and normal life! I apologise for the extremely large text!!!
You are more than welcome. From diarrheas i have now loads of fevers. Lord. This is awful. Best wishes to you too. Take Care. Hope to all of us to recover as soon as possible!!!
+Effie Siamalekas that's the second person I've spoken to from Canada and assumed USA from the accent, sorry!!! 🙈 lucky in a sense, huh! Hope you're doing good xxx
Two excellent books for ulcerative colitis and some other inflammatory bowel diseases are Breaking the Vicious Cycle: Intestinal Health through Diet by Elaine Gottschall and Against All Grain by Danielle Walker. Elaine's book is about the Specific Carbohydrate Diet or the SCD diet, and Danielle's book has Paleo recipes. Elaine's daughter had ulcerative colitis and Danielle herself got ulcerative colitis around 22, soon after marrying. I believe our autistic son has some sort of IBD and found modified versions of these diets to help him. He has many allergies and food sensitivities, constipation, plus some undigested food in stool. Mainly, he eats much wild Alaskan salmon, grass fed beef, organic chicken, and less starchy vegetables like rutabagas (spiralized and steamed), kale soup, lettuce, cauliflower, broccoli, squashes and some supplements. We use EVOO and coconut oil for fats besides the fat he gets from the salmon, etc. SCD says no liquid milk, no sugar, no grains, no potatoes or corn.
Hello effie...i have been suffering from UC since 11 years n doing good. Being an indian n having indian lifestyle, it was easy to manage the situation. But recently i took it for granted and had lot of acidic diet like burgers, pizza, biryani, non veg n what not haha...so had 2 flare ups since 1yr n now i'm changing my lifestyle completely bcoz i don't what Jpouch at such an early age...eat alkaline, do pranayamam for UC by Ramdev baba, don't take too much stress...dnt lose ur confidence n hope
+Effie Siamalekas welcome and any time :-) hey forgot to tell you...World Health Organization in its recent report has observed and suggested that ''a daily intake of 400 grams of fruits and vegetables reduces your risk of almost all abdomen related diseases''...so follow it and you will be okay...take atleast 3 bananas and 2 glasses organic green cabbage juice ( glutathione/glutamine rich food- mother of all anti-oxidants) and lime juice with salt or lime rice (no sugar) and watermelon in your daily diet....consume more alkaline food especially food that is rich in glutamine and avoid all acidic and carcinogenic items and most importantly than diet DO NOT TAKE TENSION at all...then you can live happily and healthy for the rest of your life without a J-pouch
Thanks for the video! I have been dealing with ulcerative colitis sense 2013. My hemoglobin was also dangerously low and I had to get 2 bags of blood my first admission to the hospital, after my first visit I was admitted four more times. I was loosing so much blood that I got two more transfusions and a total of 7 iron transfusion just to bring my hemoglobin back I am now doing better because of Humira and diet change.
+Marissa Veronica so happy to hear that! I remember how scared I felt, knowing how much blood I had lost - it still amazes me today how low our hemoglobin can get, and have absolutely no energy to move, but when you gotta go to the bathroom our bodies just take over. Anyway, i hope your hemoglobin is back in the hundreds, and I wish you the best of luck :)
+Marissa Veronica so happy to hear that! I remember how scared I felt, knowing how much blood I had lost - it still amazes me today how low our hemoglobin can get, and have absolutely no energy to move, but when you gotta go to the bathroom our bodies just take over. Anyway, i hope your hemoglobin is back in the hundreds, and I wish you the best of luck :)
Got Pancolitis may 19th 2017. I needed 9 blood transfusions since then. Got c diff and pancreatitis and been hospitilized for 31 days since I got it. Just been torture since then nearly lost 40 pounds. I am on remicade now and feel alot better. I am so glad to just be out of the hospital. The hospital I went to actually ODed me on Iron. I am still battling with this bs I nearly went insane. Nearly got addicted to dilaudid and have been struggling. Trying to stay positive. Any advice?
oh what a wild ride! I'm sorry to hear this :( I'm glad you're feeling better and out of the hospital! Yes - stay positive! Surround yourself with people you love and take care of yourself. Eat well, exercise and listen to your body. You got this!
Effie Siamalekas Thank you. I just got back out of the hospital for the 6th time for pancreatitis again :( Got 2 more blood transfusions and got c-diff again. 6 more nights in hospital is no fun. Have you been on mercaptopurine? because that drug makes me nauseas so I got off of it and just take remicade now at 10ml/kg Double dose from last time. I am getting a MRICP to see why I keep getting pancreatitis. It has been so stressful and rough and lost another 10 pounds in hospital. I went from 170 in april and I weighed 124 this morning. Worst experience ever. I need a endoscopy and colonoscopy soon and that should be fun. Not good times but I think I am recovering now :( I hope. How is your UC now? Also they do not know if my UC is crohns or not from the biospy from last colonoscopy. This is bad I hate hospital stays and the pain in unbearable 24/7 in there having like mental breakdowns. Being home is good though. I just need to eat healthy as possible while gaining weight
The good 🙂 1. Black seed oil ( unfiltered, organic ), combined with raw honey. 1 teaspoon of each, once or twice a day. 2. Drink Bale fruit powder in water or Bale tea. 3. Eat plenty of fruits. 4. Eat small meals. 5. Stay hydrated. 6. Meditate, hypnosis, or do sessions of deep breathing. The bad😩 1. Don't eat dairy. 2. Don't eat junk food or sugary refined carbs. 3. Be careful with nuts and seeds, and be aware of allergens. Peanuts are the devil to me 🥜👹!!! 4. Don't over eat. Intestines are flared, let them relax. 5. Try and eat gluten free. And last but not the least tip. If it works adapt. Wish you all the best. And may you heal fast.
Thanks for sharing your story. i was diagnosed a year ago and although relatively mild symptoms now that I'm on meds i fear for the future and what i should be eating differently now. Take care and thanks again.
Remicade is the shit! 2 and a half years since i was diagnosed with pancolitis, I'm currently taking 75mg of 6mp (Mercaptopurine) with very minimal side effects.
I subscribed. Not because I have (survived) Crohns disease, but I really think you're giving a very detailed story , yet short enough to keep watching... lol. I mean not boring or something. Lets make this a (recovery) bowel disease channel.... A lot of positive comments... SUBS WILL FOLLOW. Hold on to this positive energy ! ✌💪💯
+Jose Pescador Now I see .... it's the mirror... Looked like two posters of bananas.... lol. Anyways, added this video in a ' bowel-disease ' play list , if you don't mind.... Keep up the positive energy. Very good .
+Jose Pescador hahah I was wondering why you were asking me about bananas. But I do like bananas very much... Which is why I stole the poster from the subway. You can't tell from far away, but the poster is actually advertising getting checked for std's lol
I also wanted to mention what I suspect to be a causal factor for many people in inflammatory bowel diseases. Less than two days after our daughter's second round of 7 vaccine doses at 4 months old, she woke up with MUCH cylindrical shaped mucous in her stools and started throwing up her milk based formula, so we switched her to soy. When starting solids, she threw most up and at 14 months, had a severe reaction to peanuts. I always knew it started with the vaccines, even though I continued letting her be vaccinated because of denial and pressure and obnoxiousness from the doctor; I switched doctors less than a year later, happily. Our son had a similar experience about 3 years later. The vaccine schedule has more than tripled since I was little, and I had never heard of severe peanut allergies or autism as a child because they were so rare. Great researchers on vaccines and their side effects are Dr. Suzanne Humphries, Dr. Sherri Tenpenny, Dr. Meryl Nass, to name a few.
Vaccines are not causally related to autism. There is no study that showed that there is a causal relationship . It may be correlated, but that doesn't mean it's the cause.
I just wanted to say all the best and hang in there. I got UC at age 16 and here I am 37 years later. Still have it, still need pills to maintain remission. I have good days and bad days still, but not as bad as when it first started. Keep your chin up. Stay well.
I'm 10 and I have UC too and girl I feel you I was in the hospital for almost my entire spring break wich is a month and it hurt and now I take " pentasa mesalamine and a whole bunch of other crap I would literally almost faint at school cause they could figure out what I had, I would be tardy like every day because I didn't have enough energy to get to the door so I would sit in the cold cause I literally couldn't get up and no body cared! I was always pale and stuff and my dad would pull me out of school and my teacher thought I was faking it and would roll her eyes!
Great video! I'm sorry you got Ulcerative colitis, I have Crohns disease since I was 13 so I know what you're going trough :( It's not fun. I hope you're doing well. I'm subscribing btw! I make videos about my disease too but they're in swedish haha
First time seeing this video. How are you doing now? I'm 47 and was diagnosed in 1988 right out of high school and eventually lost my large intestines in 1991. I had an ileostomy for about a year and eventually J-pouch reattachment surgery. I hope you are doing much better now. It's a terrible disease, but I would imagine the medicine today is much better than it was back in the late 80's and early 90's, but sounds like you are doing same treatment I was going through for the most part. Not much of a you-tuber, but would be happy to answer any questions you have. I just found out my niece was diagnosed at 20 yrs old...so sad. Hang in there and I hope you beat this or at least get it under control and is manageable for you.
Hey! I'm doing fantastic. I'm off of imuran and still feeling great with remicaide. Yeah I think i'm pretty lucky to have gotten UC now rather than earlier on. They seem to know how to manage it with medicine (for the most part). I find that a plant based diet is working very well for me :) I hope you're niece is kicking colitis in the butt! Sending my love to you guys!
Hi it's good to see I'm not the only one dealing with UC. I wanted to say that the Prednisone you're taking can help but please!!!! Talk to your doctor about other alternatives for your inflammation, because taking so much can cause your bones to become brittle. it damaged my mom joints to the point she had to have a total hip and knee replacement. I've just started new treatment that's called humira and I can already see some improvements, it helps with inflammation and the UC also arthritis which I've developed from the UC you should most definitely talk to your GI Doctor about it. Hope you'll get better stay strong!!
+marie styles hey! Yes I know the steroids are really bad for you. But it is better than my colon not healing. It's good cause it gets the job done quickly and effectively (and at a low cost). Hopefully I won't need to go back on prednisone if I so get another flare up, because it will (hopefully) never get that bad again, because I can monitor it and control it with diet, now that I know what it is :). And yeah I've heard great things about humera too! There is no reason for me to change my treatment right now, because the remicaide is still working beautifully. But I will definitely explore the option of humera if there comes a time where I might need to switch off of the remicaide:) glad you're seeing improvements!
+marie styles hey! Yes I know the steroids are really bad for you. But it is better than my colon not healing. It's good cause it gets the job done quickly and effectively (and at a low cost). Hopefully I won't need to go back on prednisone if I so get another flare up, because it will (hopefully) never get that bad again, because I can monitor it and control it with diet, now that I know what it is :). And yeah I've heard great things about humera too! There is no reason for me to change my treatment right now, because the remicaide is still working beautifully. But I will definitely explore the option of humera if there comes a time where I might need to switch off of the remicaide:) glad you're seeing improvements!
+marie styles hey! Yes I know the steroids are really bad for you. But it is better than my colon not healing. It's good cause it gets the job done quickly and effectively (and at a low cost). Hopefully I won't need to go back on prednisone if I so get another flare up, because it will (hopefully) never get that bad again, because I can monitor it and control it with diet, now that I know what it is :). And yeah I've heard great things about humera too! There is no reason for me to change my treatment right now, because the remicaide is still working beautifully. But I will definitely explore the option of humera if there comes a time where I might need to switch off of the remicaide:) glad you're seeing improvements!
I was symptom free for over 10 years when my house was invaded while I was home. I was able to repel their attack (shots fired), but within a couple days of that stress my UC came back and has been with me for closing in on 3 months. I am worried that my employer thinks I am lazy or unreliable. Our benefits are good so I am thinking about taking some medical leave, but though I feel weak at times I haven't felt hospitalizable. Blood test (unrelated) had good numbers so I feel like I am suffering, but just not quite enough to deserve the time to heal. :/
Hey! I'm 16 and was diagnosed with UC around 5 years ago... It is literally the worst thing but it's actually so comforting seeing someone else young and normal dealing with the same thing. I've tried so many drugs but my body reacts really weirdly sometimes, I was on prednisone for a month or two but it ended up making me really sick. Hopefully you find something that works for you! Wishing you the best! Is there any way we can touch?? I'd love to chat to someone going through the same thing :)
Thanks Isy! Yea we can definitely chat - you can direct message me through Instagram or Facebook. You can find the links on my channel under the 'about' section :)
My doctor gave me medicine when I was diagnosed and it did work, however it came back a couple months later. After researching on my own, I've found grains were the main reason. I've had UC for just over a year now and am still learning how my body reacts to certain foods but I have no symptoms when I cut out grain. I've even had gluten free pancakes and cookies (which normally would effect me terribly) with good results. If you have UC please adjust your diet to cut out grains, especially gluten. It made all the difference for me. Feel free to contact me if you wish.
Yep been there and done that. Although 3 years after I was diagnosed I spent 3 months in the hospital because of a flair. I always have another disease that is really rare and it affects all of my organs, but first hits your kidneys. So when I was 16, and hit this really bad flair of my UC, and pooping so much it made my kidneys worse. So my iron was also really low, and because of the kidney issues I wasn’t able to have a blood transfusion as that creates antibodies in your blood. And I knew I was going to need a kidney transplant sooner rather than later. Antibodies are a big no no. So I ended up having Iron infusions pretty much every 3 weeks. But thankfully the prednisone worked for me. I had my transplant actually four years this past week. And prednisone is one of my transplant medications that I have to on for the rest of my life. Only one 5mg a day, but that’s enough to keep my UC under control. Which is good because the medications given to help control UC are bad for your kidneys. So I can’t really go on anything. But since that really bad flair up when I was 16, I’ve been good. That was 10 years ago.
I was misdiagnosed with ulcerative colitis 18 years ago and suffered terribly on and off for 17 years until I figured out with the help of a naturopathic doctor that I actually had Parasites the whole time!
Thats crazy! I have also heard from some people who suffer from the same symptons, that it was actually parasites the whole time! Hope it's all taken care of now. That's a long time to suffer when you really dont have to be! Ugh....
I live in BC aswell and just got diagnosed with UC last week , I honestly don't understand how I got it because I wasn't going out much the last 2 months . I still believe there's a way for it to go away eventually (yes I may be naive) but there isn't enough research about UC to say otherwise , they don't know how you get it or how to get rid of it so how can they say it'll never go away if you control it and eventually stop the meds .
Do you think you can make a video on what you eat with UC, my brother has UC and i want to know what to make him so he doesn't hurt. Thank you and stay strong!
right now i eat basically everything. but i did keep a food diary from when i was flaring and it was pretty strict. i definitely plan on making one soon!
Alison Morales I was diagnosed when I was 6 and I'm now 13. as far as diat can go it is different for every person but if you need advice try and stay away from rich and spicey foods and foods that are too much of anything. also acidic things don't eat because they cause problems
you can make this every morning before breakfast: Aloe, green apple, pineapple and cucumber. it is going to help him a lot. hope your brother heals. love from another UC fighter. love
Thank you for doing this video. I'm in the hospital right now was just diagnosed with UC about an hour ago...And your video was awesome...Very informative and helpful.
amazing! sorry about your diagnosis, but hopefullly you find what works for you and you can manage it well! I know it sounds scary at first but once you start to understand it all, you'll realize its not too bad if you make good decisions and change your lifestyle a bit!
zjohns
Effie Siamalekas are you talking about special diet or meds?
zjohns know that i am one of your supporters you can fight it
I was recently diagnosed with Colitis after about five years of having symptoms. It's good to hear other peoples stories. Thanks for sharing. :)
Life With Satch what was your symptoms
lost my colon 12 years ago from uc and got a j pouch 11 years ago, you'll be alright. hang in there. 34 now and stronger than everr ;)
I just came across this video and I just wanted to let you know that I appreciated it so much. I was diagnosed at 15 and am so embarrassed of my disease even after having it for 3 years. I love how open you are and it makes me realize that there is no need to be ashamed. Hope all is well 💜
Yay! so happy you feel this way! Yes, there is definitely nothing to be ashamed about. every time we talk about it, share our story, and acknowledge it, we are breaking the stigma that this is a gross topic that no one wants to talk about. You don't need a broken arm or broken leg to get help. Just because you cant see your illness, doesn't mean you dont deserve to get the help and compassion that you deserve! :D Stay strong Meagan!
I was diagnosed 2 years ago, It can be hard when people don't understand that it can be really serious even though it's a hidden illness! It's nice to see people coming together to help each other. Soon i'm going to start videos on diet plans etc for Colitis. Keep up the good videos :) x
I am diagnosed too 😞 am really suffering and really sad
fruit and beans..
Dd you guys heard of FMT (Fecal Transplant)
Poppet's Life huh?
Poppet's Life
I was just diagnosed today even though I’ve had symptoms for over a year and my doctor wouldn’t take me serious also I’m only 13
I have UC and I've been bleeding for almost a year: they put me on prednisone which didn't work... It's a mild case though but still very tough to deal with. I'm glad you posted this and had enough courage to talk about it.
So, I had my first flare in December 2016, when I was diagnosed with Ulcerative Colitis. When I watched this video for the first time, I remember thinking "wow, I am happy I don't have this many issues with treatment in the hospital, like you did..". The medication did its job and it was only for temporary use. But a few weeks ago, I got a fever with a lot of diarrhea. I didnt think much of it, but after a few days I suddenly woke up in the middle of the night. I had a lot (and I mean A LOT!) of blood in my stool where I almost passed out and got really nauseous, was really dizzy. Next day, I called my doctor and after the weekend (where I lost a lot more blood, feeling pretty awful with a lot of pain) I got a colonoscopy. Within a short amount of time, my whole colon was severely inflamed and my bloodlevel was very low.. So they said I should stay in hospital. Blood transfusions, iron and prednison was given. They were thinking of removing my colon so I got really emotional. Last chance was the Infliximab/remicade. Finally it worked! I got sent home and am now recovering.. God, I did not see this coming! It feels good seeing that I am not the only one who went through this.
+Isabelle_fitnessjunkie sorry to hear you had to go through that. I know how scary it is, but I'm so glad you were able to get Remicade and that it worked for you!! It has literally saved me, and I'm living most of my days symptom free! Hope you recover well!
Effie, thank you for making this video! I'm currently going through the exact same things! Literally our stories line up almost to the date with hospital stays and blood transfusions! It's sorta comforting to know that I'm not the only one who truly know what this is like. Thank you for raising awareness. Maybe once I'm feeling a little better I'll have the courage to tell me story too! Stay strong!
Ally, that's so crazy!! I really hope you're starting to feel a bit better now. I know how hard the last couple of months have been, and we're definitely not alone! And yes, you should definitely share your story when you get a chance. I found that the more aware people are about what's going on, the easier this is to handle. Keep your head up, and work on finding your 'new' normal :)
Hi Effie! While I don't have Ulcerative Pancolitis, I was diagnosed with Crohn's Ileitis about 2 weeks ago. I really enjoyed your video and sub! I hope all is well and you are making positive progress with you disease! Look forward to more videos.
I also have uc and i wanted to tell you that it is vital to continue whatever you were doing on your life before uc.YOU CAN CONTROL IT.It is somethingvthat comes from the inside i have faced twice this year and i was diagnosed for the first time this year.You'll notice that whenever you are stressed or sad you will be facing symptoms.Try to work on the way you see things.I was an athlete for 8years (hard working) and i lost 15 kilos(muscle) in a year.But i dont give up and none should.I will control and you will too.
Hello my greek friend! Είμαι και γω Έλληνας πατριώτη! Βλέπω τέτοια βίντεο, γιατί έχω ακριβώς τα συμπτώματα της ελκώδους κολίτιδας ή της Νόσου Crohn. Βέβαια εμένα ο μπαμπάς και η γιαγιά μου έχουν IBS. Και άρα μου λένε ότι έχω το ίδιο επειδή περνάω κρίσεις πανικού λόγω αγχώδους διαταραχής και κατάθλιψης. Ότι και να ναι...Τα συμπτώματα μοιάζουν πολύ και είναι απαίσια!!!! Όπου και να σαι υπάρχουν συμπατριώτες σου που σε νιώθουν...Έπρεπε και στην Ελλάδα να βγαίνουν ανοιχτά και να μιλάνε για αυτά τα ζητήματα, ώστε να στηρίζουμε ο ένας τον άλλο....Take care & Look after yourself!!!
Thanks for posting. I was diagnosed when I was only 7 years old. It's been a rough journey but I have gotten much better. The pain that comes with UC is unbearable sometimes. I'm happy to see that other people are sharing their story, I was terrified when I was first diagnosed. Being 7 I wasn't really sure what was going on with me. I became anemic and very ill. Wound up in the hospital for days. The medicine made me feel sick. We tried many medicines until we found the right one. It's been almost 11 years. Hope you are feeling well.
DopeFreshNation Organ pain is the worst in my opinion. I had liver issues once as well as my colon and I would double over no matter where I was. The only thing aside from the pain meds that helps me during a flair is a super warm blanket out of the dryer or heating pad over my abdomen to help take some of the edge off.
I am glad you're able to stay positive, such an amazing young girl. You have given me the strength to try and change my outlook of my experience and life in general. I wish you all the best and a healthy life.
+assignmentable thanks so much :) life is definitely what you make of it, so I wish you all the best!
Hello Effie! I found your video after receiving a diagnosis of UC yesterday. Thank you so much for sharing your story, it is truly appreciated. I feel like it’s a little easier to wrap my head around my diagnosis after hearing of your experiences. Wishing you all the best
Hey I really like your channel and I appreciate the advice on UC. I am 20 and was recently diagnosed with it and have struggled to cope with it myself. The weakness, tiredness, restlessness, constant intestinal pain, and people saying I have explosive diarrhea can really get exhausting so I really appreciate your video. To help take my mind off my sickness and pain I created an iPhone game called Box of Lies that is a 2 Truths 1 Lie Trivia game if anyone is interested.
I just thought I would mention it because it would really make my day to see others playing it and also I have been extremely stressed out about how I am going to pay for my medical expenses on top of my living expenses on top of my college expenses since I still can’t hold down a job but if you are not interested that is fine. As for the people in the comments section, please keep sharing your stories as they are really helpful. And Effie, keep posting great videos. Have A great rest of your day!
hi effie.
Glad to hear you are past that scary stage, which is also a lonely feeling. First and foremost we UCers need to let newbie UCers know: "You Are Not Alone". And YES, very helpless feeling. STAY STRONG AND FIGHT.
I've had UC for 5 yrs. Doing great now compared to my onset. Short explanation, I had it really bad. Went through all the emotions, crying, anxiety, feeling like nobody understood me or my feelings. Went through 2 Doctors, and many meds.. etc. Here is what finally works for me and what I'm on now: (2)500mg Sulfasalazine daily and (1) 50mg Mercaptopurine aka (6-MP) daily.
Supose to be both 2xs a day, but me being stubborn or positive I cut it back slowly myself. As I said, I'm still remission doing great.
Thank you for sharing your story. As many of us long time UCers also know, Everyone of us will react to different meds. Again, don't give up anyone. You will go through a ton of F*#d Up emotions And that is normal.
Love and Support to all.
Stay strong.
www.ihaveUC.com
I am extremely impressed with the timeline in lower right hand corner. I think you are doing a great job documenting your illness. Inspiring videos very professional.
Haha thank you! It took some time, but it was fun making it. I think it turned out pretty well too! :)
Great video! I've had UC since age 18 I'm now 39. This disease sucks. Stay strong.
Please please please make more videos! I was diagnosed 1 month ago and I've been so scared because I don't know what to expect and what's normal. I had an appointment with my GI a few days ago and forgot to ask certain questions and I won't see him for another 3 months. The way you explain everything makes me relax a little. It's never a horror story. Some people can really scare you but you just know how to talk about it. I don't know if I'm making sense. Thank you for these videos and I really hope to see more.
+Fierce Virs yay I'm so happy! You just inspired me to film a new one today! It will be up soon!
UC is all about perseverance. Stay strong. It is an isolating and demeaning disease, but only if you let it be. I hope your symptoms continue to stay in remission. My case went from nonexistent at age 30, to having a j-pouch at 33 years old. I saw myself go from a lean 165 at only 5'6", down to 135 at the worst. I have now leveled at a healthy 150 and am able to work out like I did before becoming ill. It is along road but so worth the peace of mind of not having to worry about a flare and the terrible poison they give you for symptoms. Great video.
my mom was diagnosed with this a year ago.. and it's awful.. thank you for sharing your story. means alot to me. I'm trying to look into different stories of other people's experiences.... thank you for your honesty.. you are brave and beautiful and amazing.. xoxo
Thanks, Lady!
Lady Luck Tutorials Lmao basically for me took mad bloody shits pretty gross. Lost around 30lbs and I weighed around 120lbs I think it was because I was barfing everything I ate also pretty gross. Finally went to a specialist after 2 months because I was too lazy to go I know it sounds stupid, but I was kind of depressed at the time so I didn't really care that much. I was the diagnosed with Ulcerative colitis after I did the colonoscopy. Legit shit myself in there because the lady wouldn't let me go to the washroom. But, I already knew how to fix myself for a couple hours the trick was to shit but don't eat for a day or so. Only eat when it was a priority. So that's how I knew if I went to the washroom it would stop hurting, but after I shit myself a little she let me go.
I didn't have to stay at the hospital for weeks like she did for me it was only for 30 minutes lol. After we went to the clinic to get those steroids for my colon pretty much exactly what they told me they told her. Then later on we did got a approval for this 3000 dollar medicine called entyvio which I'm very thankful for. And after that was about it. I still eat like shit so I probably should fix my diet, but I'm pretty picky so.
Lady Luck Tutorials did she poop a lot?
Hey there thanks for the video! I'm from London and have recently started to have the same symptoms as you, although not as bad at my worst I was going to the toilet 6 times a day. I just wanted to say thanks for sharing and it really made me feel better that I'm not the only one going through this and that you seem to be doing really well, and I'm looking forward for future videos 👍
+David Burr I'm really happy my video made you feel better, you're definitely not alone! I am doing a little better every day, and I hope you start to see some improvement soon, too! (I will have a new video up this week so keep an eye out!)
Just got diagnosed this week with UC! Nice to see an online community
Im 16 and i also have UC, I'm really enjoying your channel and seeing what other UCers are/ have going through even though I've had it for 4 years
+Alicia Tivoli thank you!
I was diagnosed with Ulcerative Pancolitis right after my 18th birthday even though they tried to find what's wrong for a year and because I wasn't having bloody stools they didn't think about UC/UP/Chrons. After they diagnosed me they put me on Medrol (steroids) and Salofalk. Last October while I was abroad at uni I started feeling really bad again even though for the past 3 and half years I felt perfectly fine. I go to university in Greece and I was feeling so bad that my dad had to fly to Greece and take me home in Cyprus because I couldn't even walk. I went to see my doctor and he put me on Asacol only because he thought that 12-15 bloody stools a day can be fixed without steroids, little did he know, though... A few days later I was put in a private hospital where they are giving me painkillers, Asacol & IV steroids but I was getting worse by the minute and they would do nothing. After 2 days there I asked to be discharged and they had me sign that it's against medical advice and I went to see a doctor who has studied in Israel (it's a thing in Europe to look for doctors who studied there, they seem to be the best) because he wasn't from my town, he introduced me to my current doctor. She basically saved my life. If I wouldn't have signed those papers and go look for help elsewhere I would've died. As soon as I met this doctor she put me in the hospital with 400mg Prednisone IV, 4g of Meclozine and Asacol enemas + Iron, Potassium & Proteins IV and some injections because I wasn't walking and my muscles were starting to atrophy. Because of the dehydration, they couldn't find my veins to take samples to check my levels so after over 50 needle pitches and my hands becoming swollen and really purple-ish - black they started taking blood samples from my legs. After two weeks in the hospital, multiple blood tests, Sigmoidoscopy and unbearable pain, they let me go home, where, as you already know, the pain didn't stop because Prednisone is a bitch that it may fix our Colon but it fucks our bones. My doctor was afraid that she will have to put me on Imuran, but it seems that my body it's pretty good on Meclozine. I really wish that one day they will find a cure for our disease or at least that fewer people will end up having it. I hope everyone who has to deal with this disease will have more better days than bad days. Never give up guys! You are the boss, not the disease!
Thanks for sharing your story Stefan
It was great hearing your story. I can't believe you had to go through all that in such a short time span. I was diagnosed with UC when i was 7 in 2003 and I've taken a plethora of drugs. In 2014, I had a similar experience as you having severe cramping along with bloody and loose stools. I was taken to the hospital and put on remicade. And because I'm also anemic, I got iron infusions as well. I've had a lot of experience with UC and I hope everything settles down and you can live a normal (kinda) life. Hope the remicade keeps working for you. Goodluck!!!!
+Carly Hanna thank you!
I was diagnosed about 5 years ago now. Most of the time I've got it under control, but there are definitely days, weeks, and sometimes months that are pretty damn hard to deal with. Keep your chin up and listen to your doctor everybody, it will pass in time.
Alex Eddy how do you get it under control
Im glad to hear your doing better! theres so many people in this world who deal with this disease everyday, I have been effected by it as well and have been diagnosed sense October of 2015, I hope the medication they give you help you, its a hard disease to get control of especially when everybody's body is different, its been 9 months... i have been on steroids, imuran which nearly made my body toxics however that does not happen to everyone, mezevant? im not exactly sure, however I still deal with abdominal pain when i eat.. most days it never matters what i eat it affects my digestive system, I am also Vegan, the pain that aches thoughout your body, feeling tired every moment.. ect.. just know theres so many people out here who are willing to talk and listen! Good for you for doing a video theres so many people out there who have a hard time understanding what there spouse or kids go through, so thank you for being so brave! i also do know a lot a lot of people who take remicade and are having great success just remember it can be a long path to get it under control, even mine still isn't to this day. So good for you , for what you are doing keep it up keep positive its the only thing that can hold us up !
thanks for your comment kayla!
Thanks for sharing your story. I was diagnosed with UC January 2015. Mine was a battle to figure out why I was feeling how was feeling. I thought I has the never ending stomach bug. It was 3 weeks of suffering and losing 25 lbs before I got admitted to the Hospital. Thats when I got diagnosed. Also along the way I had developed a swollen ankle which took a few specialist to find out that it was an edema nodosum which was painful. I am on daily medication, but still have my ups and downs..but mostly ups thank God.
I had remicade for a couple years and asacol along with that. Only taking asacol now, it's been 7 years since my diagnosis with UC/Crohns. Currently having a little flare but haven't had it as bad as so many like yourself. What I've found over the years is to be as consistent as possible with the food you eat, the GI deals directly with foods so it's paramount to monitor the foods. Dairy and gluten have been cut out completely. Yes gluten, I've found when I eat it I'll flare, and I hadn't had anything gluten until vacation a few weeks ago and guess what started flaring. I've also found cannabis to be beneficial in reducing inflammation, when I medicate with it I can feel my body cooling down loosing the inflammation. Overall making sure your body has the least amount to worry about (immune system) is key so that the GI immune won't get over stimulated
You're an absolute hero. I love and miss you like crazy.
Awh thanks love!! Miss you too! ❤
+Effie Siamalekas I can totally feel what you're saying... ( crohns' disease ) fifteen surgeries. I have a picture of my abdomen on G+ ) Keep up the great positive energy. I would like to conversate sometimes.... (My longest hospital visit was 11 months) I can relate to everything what you're saying. (isolation,bloodtransf.,iv food,etc etc) Keep it up .... I really appreciate this ... I was 55 kg. , now I'm 95 kg. (I had remicade, I have Humira now)
+Effie Siamalekas I have uc also I know exactly what your going through. 🙂
I know someone here in Ireland who has been diagnosed with it, so I'm researching it a bit. Thanks again for uploading and good luck.
+Aiden McAteer it's been almost a year now and I feel great! I always forget I have colitis until the morning when I remember I have to take my medication :) I hope you're friend is doing okay! It will get better
I was diagnosed with UC today after 4 months of symptoms. I have been on steroids since my initial colonoscopy and they have been very effective in controlling the bleeding. However as the dose decreases the symptoms gradually return, just as you said. I'm starting on Humira next week which is an immune-suppresant so we'll see how that goes. Nice video - I hope all goes well for you in the future. Thanks for posting.
Hey Effie, over here in Calgary my 10 year old just received crohns/colitis diagnosis and it's been a mini nightmare. Thank you for telling me your story on here, I feel as a parent it will help me know a little bit more about what to expect and look out for. Hang in there beautiful girl, and best wishes as you endure this journey.
+Fyred Up Thank you! I know it can be so hard as a parent of IBD. At some points, I swear my parents were having a harder time than I was. But I honestly could not have done it without them. The best advice I can give you, is that you have to try to stay positive for him. Watching my parents worry was almost worse than the physical pain I had to endure sometimes :( Stay strong, and i hope he gets better soon!
hi i'm ava! a few months ago i found out that i have a tumor, ulcerative colitis, chronic pancreatitis, autoimmune disease, and clinical depression. so at least you aren't gonna die within two years💗💗
Sorry hun 💕
As a nurse, I am so happy to see you have such a great support system, you have gone through so much and I can't even imagine how much pain you experienced. I am so happy to see that your treatments have been effective! I hope you continue to get better and thank you for making this video, it's awesome that you are willing to share your experience! Stay strong beautiful!
Thank you💜!
Hi Effie!! I'm so happy that I came across your video!!
Im 18 from Australia and also suffer from ulcerative colitis, I got diagnosed about 2 years ago now but was dealing with symptoms 2 years before that, loved your video !!
Awh thank you +nicole aura !
Awh thank you +nicole aura !
Awh thank you +nicole aura !
I just got diagnosed with UC. It’s terrible.Thks for doing this video.👍🏻 Its nice to hear other peoples stories. You know your not the only one going through it. It kinda gives you hope.
It does kinda suck, but you'll learn to live with it and forget you even have it! You're never alone
Effie Siamalekas Thks!!💙
I was diagnosed with UC two days ago I have been in and out of the hospital for the past month and have been battling this since I was 7 years old. They told me I had diff-c but I didn't it turned out my flare was so bad my white blood cell count was 23,000. I got prednisone, omeprazole, and lialda to take everyday to force my body into remission which I'm so excited for!!!! I can't wait. It's honestly so funny how people take pooping normal for granted lol for people like us it's like a god given gift because that's a sign of remission!!!!!!!!!! Which means no pain anymore.
Thanks for sharing your story. It was interesting to hear a first hand account of how the disease can effect someone. Thanks for uploading. I hope you feel better soon. Take care.
Hi. I was diagnosed with UC about 2 years ago and have been suffering a flare for a few months now. Luckily its relatively mild but its still very difficult to deal with. The worst part was pre-diagnosis. No one knew what was happening with me I was having bloody diarrhea stools 2 to 3 times a day for weeks and lost about 60 pounds in weight. I wasn't able to go walking which I love to do. I wasn't able to enjoy Christmas or New Years. I felt miserable all day. The best advice I can offer to anyone suffering from this is to get prescribed the mesalazine medication and for Gods sake start eating more apples and bananas as they help your digestive system.
typhoon2401 thank you!!!
Sig Inc. hey greetings!
please tell me that is this disease curable?
please please let me know.
typhoon2401 , I've just been prematurely diagnosed with Crohns and I had blood in my stool every day. I was going to the bathroom upwards of 15 times a day and lost 70 pounds in 3 months. I now am unable to gain weight, hardly eat and the doctors still haven't given me a for sure diagnosis yet. Hope all is well now
Great hearing your story, I'm 16 and I was diagnosed in March. I like hearing about other people's stories, makes me feel less crazy and lonely 🙃. Hope we can all get into and stay in remission for a long time!
Hello Effie!
I was diagnosed with UC a couple years ago. it's insane how time flies. I could relate to you on so much. I wish I was not on Prednisone for as long as I was. I gained so much weight and it messed up my body quite a bit! =(
But on the bright side I feel soo much better... except recently I have had some strange pains on my right side which kind of freak me out!
Well hey, there is so much I could say... But I don't feel like over burdening you with a novel! Send me a PM or something some time! =)
Thank you for your time!
Jeffrey.
I honestly admire how positive you seemed in your pictures, I know when I was admitted to the hospital I was depressed as hell and it didn’t help that the nurses kept messing up my food orders so they would be feeding me food that made my gut act up. And now my 5ASA pills aren’t working so I have to be switched to remicade and I’m a bit nervous about it “compromising my immune system” as my GI puts it, because I still have to go to school and flu season is coming up. It’s been a long journey for me too but seeing you like this gives me hope that I’ll soon be able to feel better and not have bloody stool and enjoy some of my favourite foods including a birthday cake, which would be nice to have on my birthday lol
great videos ! ☺way to stay strong throughout everything. I love that you've chosen to be open and honest about your journey and the disease. I think it's so important and admirable to have the courage to do that and help inform others -especially those going through similar things ! ❤
:D Thanks Nat!
Having a colonoscopy this Friday, Ive had some occasional blood and stomach cramps that are on and off as well as some bowel changes - doesn't sound nearly as bad as what you were having, but I guess UC can be mild and severe (hell maybe it's IBS and hemorrhoids)
Honestly just hoping for anything BUT cancer at this point haha, props for being able to stay positive!
How'd it go?? And yeah, i had a pretty severe case of UC, but honestly, any symptoms can suck... so i feel ya.
Hey Effie! Luckily they found nothing, which is both good and bad - still not sure what's wrong but still working on it!
i know I am pretty randomly asking but does anybody know a good website to stream newly released movies online ?
@Azariah Kason I would suggest FlixZone. Just search on google for it =)
@Peter Reed definitely, I've been watching on FlixZone for months myself :D
Thanks Effie for your video.
I have just been diagnosed with Colitis via Colonoscopy, and still have to go see my Specialist for results on Biopsy and Blood Tests.
Sounds like you really went through a rough path. Mine isn't so severe, but still a shock to the system.
Keep doing the videos you did an excellent job.
Thanks again
C
:) thanks +Colin Coakes !
I have had this since Nov.1995...Pentasa PREDNIZONe, sulfadiazapine etc. Was in hospital for 5weeks! Good days and some bad!.....Thank you for your videos!
Good video Effie! I've been diagnosed with UC in 1996, since then: ups and downs, twist and turns, very good time and very bad time (not necessarily related to the disease). Now at 46, probably around the age of your father, I can tell you that I don't regret anything, even if, let's face reality, the disease took an high toll from me. Anyway you're young, you're having the right attitude and the research is making great steps! Be serene!
Greetings from Italy!
+Carlo Defilippi I completely agree! I'm learning so much about myself, and I don't think I would have ever taken the time to learn if I didn't get a chance like this. The right attitude is definitely a huge factor with all of this :)
Big struggle to get DIAGNOSED as I don't bleed until I'm into Pancolitis territory. I am not in remission with ENTYVIO. No side effects! For anyone suffering or being UNDERTREATED, know that switching from a GI to an IBD SPECIALIST at a hospital IBD research centre, was a game changer. (They do the Calprotectin test, which was another great thing, to get diagnosed and have the inflammation MEASURED.)
Best of luck!
I understand you. I have been through that too.
Hi Effie, thanks for your video, I went through a very similar experience 10 years ago - prednisone, 3 Remicade infusions and then I was on Imuran for about 4 years. I came off it around 5 years ago. I'm really well now, I worked out what helps and do my best to keep my health in check. All the best and thanks again x x
+Bella Halcrow good to hear! I would love to get off of imuran soon, though my doctor says not to try that for a few more years. Feeling great so I can't complain, just worried about any long term effects the imuran may have
Yeh I wasn't keen on the list of side effects for Imuran either! It's great that you're feeling well now. As I said I found what worked for me - mostly doing loads of yoga and eating right, plus quitting stuff that made me unwell (eg stressful jobs). I tapered the Imuran off really slowly. Are you also on an anti-inflammatory drug, can I ask? I was on Asacol for 9 years.
+Bella Halcrow YES quitting the stressful job is key! I'm just on imuran and a remicade infusion evey 6 weeks :)
yeh, do whatever you need to do! Everyone will understand and be supportive. Sounds like you have a good support network with your family and friends so you are sure to have success! Eat well, read up and find what helps you. My doctor was supportive when I said I wanted off the Imuran. Sometimes you need to be firm though, that's what I found. They can tell you all the stats and percieved risks, but in the end it's your decision. A supportive doctor was key in my recovery, too. He's awesome! I hope your medical team are good.
good luck, been there , suffered and now praying for others
Sabia Hiridjee its so hard.. i just got over a flare up.
thanks so much for sharing this. i was diagnosed 5-6 years ago when i was 11 years old. prediagnosis was the worst, i had to have 2 biopsies (colonoscopy & endoscopy) and 3 different consultants and by that time i was severely anaemic & had to have a blood transfusion. now, years later, im managing. i have to have a yearly biopsy and monthly blood tests while taking 4 different types of medication. I've learned what works/what doesn't with my body on flare ups but.... well, its nice to know that ur not alone and others are struggling! would love to see a diet video? i can never hear too many opinions about what works/doesnt.
Thanks for watching :) YES, ive been planning on doing a diet video for a while now. It will be one of my next ones for sure!
I just found your channel and it sounds like you had it really badly really quickly. I was diagnosed in April, but for years I had been having issues that doctors kept thinking was my appendix because the area of my colon that was mostly swollen was near my lower right hip! When we finally figured out what it was my gi doctor put me on a 30mg taper of prednisone, it was 30 daily for 2 weeks, and then down by 5 weekly, and I was also put on omepresol to protect my stomach from getting ulcers from the prednisone, and a drug called sulfasalazine, and things have been going for the most part pretty good, but this week is when the prednisone and omepresol are finally wearing off, and now I'm having an allergic reaction to my sulfasalazine. I think I'm going to be put on mezalamine next and hopefully things turn out good! And plus this pill is only a once daily pill!
+kassandra young yeah it was very quick and unexpected. A lot of people say they had problems for years before being diagnosed, but I never had any issues, it just came on so quickly! It's good to be finishing the prednisone! Good luck with the mezalamine :) I hope you find something that works soon! 😘😘
Thanks for doing this video Effie, I've spent the last 5 days in the hospital. I had my Colonoscopy biopsy yesterday and was diagnosed with Ulcerative Colitis today. Its been alot to take in today and think about. Learning that there is no cure for the disease i can say i cried a lot today. But it sounds like you had a much more severe case then i did as i didnt need any blood transfusions. I was prescribed a medication that can hopefully put it in remission and to sleep(i hope) its still all very early and im still learning a lot about it and the weight loss is very drastic. its quite a big change in my life an was very sudden and unexpected.
+Yoshi Prime hey Yoshi! I'm sorry to hear about your diagnosis. It is definitely a lot to take in at first. Do your research, ask lots of questions and get to know your body and you will be okay! Send me a message if you ever need to talk to someone! :) Hang in there.
Thank you, really appreciate it
Were you able to return to work in any way? I worked for a moving company prior to getting this diagnosis yesterday. I havnt been back to work in the last 2 weeks since this all started and from how things are going I doubt I will be able to do any work that is so physical like that. I'm so weak now. I'm trying to figure out what to do with no source of income.
I was pretty lucky that i have my own company, so i can work from where i want. I didnt work for the first 6 months, but eventually got back into it slowly :) You will soon, too!
I have colitis two and the same symptoms when my stomach was really bad I went to children's hospital in Vancouver and they were no help because they told me to eat everything that was bad for me and hurt my stomach the only thing they did do was diagnosed me and give me a colonoscopy. when my stomach was bad I was taking a prednisone in the morning and at night at night it made me Hallucinate I was taking 8 kg of prednisone.So that was kind of scary it is nice to see other people talking about this and I am hoping soon someone will find the Cheer to thisI was only nine when this happened so it was kind of a scary I'm now much better. never stop trying to help yourself cause everything will go your way if you try,
I wouldn't even know what ulcerative colitis is if you didn't make this video. Thanks for raising awareness. Stay awesome!
Thanks for watching Ab! This video hardly explains the disease and effects of UC, but I'm glad you got something out of it! Keep an eye out for my next video where I will go into more detail about what Ulcerative Colitis really is :)
Colitis is easily the worst desease ever. I had a flare up for the last 8 months. I’m just now feeling better and having about 5 bathroom trips a day. I’m single and this desease makes it impossible for me to date or even go outside. I’m only able to go to work because I prepare and have to for the insurance. During a flare up I go to the bathroom about 20 times a day. Trust me when I say that this desease is the worst.
Hey, thanks for sharing, great video for just winging it. I was diagnosed about two weeks ago but have been having symptoms for about a year... also have been in and out of the emergency room and GI clinic for about a year too, took them this long to get a diagnosis. I've been reading a lot and so far I've been hearing, and reading, that coconut oil, pineapple juice, cabbage, hemp, chlorella, and kombucha tea really helps! Hopefully they work for you, I haven't seen too much difference. Also, I think the medication they gave me makes things worse and cannot see my doctor for another month..... good luck to you
Ulcerative Colitis Journey
Good grief...what a horrible experience and your poor parents must have been scared too..Ive got my CY on Wed. Recently had Diverticulitis..better now but have to watch my diet. Having the CY to check me out. I think I've got a lot to thankful for after watching your experiences. Best of luck from France x
Thank you for sharing. I hope you get well soon. You are so brave and strong :) Be always like that.
been having problems for 8 years, parents finally decided to take me to the doctor and now I'm going to be tested to see if I have Crohns Disease or Ulcerative Colitis
oh no! Good luck with it, i hope you get diagnosed soon so you can take some action and not feel so crappy
Don't take the medications! check out Dr. Bergman. He is educating how to cure diseases on youtube.
lizette gonzalez I'm in the same boat. I've been going to doctors for almost 5 years now and I think I'm finally close to finding out what I have😭
Michelle Larsen He’s a hack fraud
Hey Effie, sad to hear you were diagnosed with Ulcerative Pancolitis. I was diagnosed with the same disease in 2011. Stay strong.
Thanks +Rob Marquez ! Hope you're doing well
I have had uc since I was 7 and I am now 13 so I feel your pain and I know you will be ok
I was finally diagnosed with ibd after years of running from doctor to doctor with the same problem. All of them either said "just cut certain things from your diet" , "I'm sure it's just a virus" or "you have ibs".
I was in and out of a&e 5 times a week and each doctor SAYING it was just me being dramatic.
I was completely sick of this and my movements were just getting worse. Until one day where I literally couldn't get out of bed. The pains were terrible and i was constantly sleeping.
I went to a&e and they said I was extremely anaemic. This was because of how much blood I was losing. They said they would refer me to a gastro surgeon... which never happened.
They ended up referring me to a phaediatrition and he decided to make fun of me and my condition.
I was sick of it. I got up and decided to go to a private hospital.
I was lucky. They referred me to a gastro surgeon finally and they said I would have to wait three months for a colonoscopy.
The pains just got worse and then finally it came to my operation.
They took a biopsy and it came out as inconclusive but they said I have ibd. But they couldn't point out if it was crohns or cholitis.
To this day I still think it's cholitis but luckily I'm in remission and I'm doing so much better.
Try to get the CALPROTECTIN TEST. It is the best stool test for Colitis measuring.
Your boy friend is so sweet. Get better soon hopefully this shit goes away soon💩. I've been dealing with something similar only no blood. Keep your hopes up.🙏🏼
Omg just clicked on your video and my instant reaction: WOW she is amazingly BEAUTIFUL :) hi this is Tufail from the UK. Hope yoy are well and having an amazing day!
I've had this illness for 2 years now and I'm only 16 I have bad and good days! Nice to know I ain't the only one!xx
Me too! I have had this since I was 8 and I'm now 11! At least I'm not the only one struggling with is:(
+Lauren's World i have had it since i was 8 and now im almost 15
+Jade sarling i have had it for 7 years
+Sebastian Delgado haha why is it crazy? And yeah I completely understand what you mean, I feel the same way.
My story is so similar to yours. I was just diagnosed 2 weeks ago and my life has changed my life. I love your channel and you’ve given me hope, thank you ❤️
Thanks for watching!! i'm so happy my video has given you some comfort. you're not alone
I was dignosed with ulcerative colitis 3 years ago. It has been a long and different journey. What I have learned is that the best way to heal your body it to eat organic fruits and vegetables, grass feed meats, wild caught fish. I do not eat dairy products, sugar or processed foods. These are extremely toxic to our bodies especially if you have UC. I have not gone the traditional route. I go to a homeopathic doctor who gives me tea's that I drink with my clean diet. I no longer bleed. I know that I will eventually heal my body completely. The key to healing this horrible illness is to heal your body, mind, and soul. Best of luck on all or your journey's. May you all find what works best for you.
Effie I am Greek too. I live in the UK though. Have similar problems. But doctors said that i have IBS, due to signs&symptoms and the family history. I am concerned though, cause i have not done colonoscopy yet. During my stay in the hospital my CRP was 20. Not to mention that in 2018 had symptoms 3-4 times. I frankly struggle with this awful situation. Cramps, diarrhea, gas, pain, fever etc are horrible. I feel terrible, cause i think that i can't live normally and that is an anathema in my lifetime...Along with the above I face panic attacks, had been diagnosed with depression and anxiety disorder. Also D3, B12, C etc, are Vitamins, that play significant role in our gastrointestinal tract and I have deficiency, shortage of them. Take care & Look After yourself. Our Diet, lifestyle and stress are important factors as well. I am praying, wishing, hoping one day to overcome all of us those obstacles !!!! Being Healthy is the Alpha and Omega!!!! I understand, that the conditions might be chronic but Περαστικά μας και Καλή Ανάρρωση!!!!!! Taking the appropriate medications, following the proper diet and the instructions of our GP, gastroenterologist or/and psychiatrists the conditions will remain "hidden and calm". Thus, are going to live a healthy and normal life! I apologise for the extremely large text!!!
Kostis! Thank you so much for your extremely large message!
You are more than welcome. From diarrheas i have now loads of fevers. Lord. This is awful. Best wishes to you too. Take Care. Hope to all of us to recover as soon as possible!!!
Best of luck Effie! I hope you've seen some improvement. Keep on being your courageous wonderful self.
+Elizabeth Mudenyo thanks liz!
Your story reminds me of mine but mine was like a year and a half before being diagnosed! USA care is so much quicker! Good to hear your story. xxx
+Katy Chapman oh no! Where do you live? I'm actually in Canada, and yeah, they were super quick, I'm very lucky :)
+Effie Siamalekas that's the second person I've spoken to from Canada and assumed USA from the accent, sorry!!! 🙈 lucky in a sense, huh! Hope you're doing good xxx
Two excellent books for ulcerative colitis and some other inflammatory bowel diseases are Breaking the Vicious Cycle: Intestinal Health through Diet by Elaine Gottschall and Against All Grain by Danielle Walker. Elaine's book is about the Specific Carbohydrate Diet or the SCD diet, and Danielle's book has Paleo recipes. Elaine's daughter had ulcerative colitis and Danielle herself got ulcerative colitis around 22, soon after marrying. I believe our autistic son has some sort of IBD and found modified versions of these diets to help him. He has many allergies and food sensitivities, constipation, plus some undigested food in stool. Mainly, he eats much wild Alaskan salmon, grass fed beef, organic chicken, and less starchy vegetables like rutabagas (spiralized and steamed), kale soup, lettuce, cauliflower, broccoli, squashes and some supplements. We use EVOO and coconut oil for fats besides the fat he gets from the salmon, etc. SCD says no liquid milk, no sugar, no grains, no potatoes or corn.
Hello effie...i have been suffering from UC since 11 years n doing good. Being an indian n having indian lifestyle, it was easy to manage the situation. But recently i took it for granted and had lot of acidic diet like burgers, pizza, biryani, non veg n what not haha...so had 2 flare ups since 1yr n now i'm changing my lifestyle completely bcoz i don't what Jpouch at such an early age...eat alkaline, do pranayamam for UC by Ramdev baba, don't take too much stress...dnt lose ur confidence n hope
Thanks for the tips pramod! I have definitely noticed a difference from reducing stress and acidity in my diet. Thanks for watching :)
+Effie Siamalekas welcome and any time :-) hey forgot to tell you...World Health Organization in its recent report has observed and suggested that ''a daily intake of 400 grams of fruits and vegetables reduces your risk of almost all abdomen related diseases''...so follow it and you will be okay...take atleast 3 bananas and 2 glasses organic green cabbage juice ( glutathione/glutamine rich food- mother of all anti-oxidants) and lime juice with salt or lime rice (no sugar) and watermelon in your daily diet....consume more alkaline food especially food that is rich in glutamine and avoid all acidic and carcinogenic items and most importantly than diet DO NOT TAKE TENSION at all...then you can live happily and healthy for the rest of your life without a J-pouch
Thanks for the video! I have been dealing with ulcerative colitis sense 2013. My hemoglobin was also dangerously low and I had to get 2 bags of blood my first admission to the hospital, after my first visit I was admitted four more times. I was loosing so much blood that I got two more transfusions and a total of 7 iron transfusion just to bring my hemoglobin back I am now doing better because of Humira and diet change.
+Marissa Veronica so happy to hear that! I remember how scared I felt, knowing how much blood I had lost - it still amazes me today how low our hemoglobin can get, and have absolutely no energy to move, but when you gotta go to the bathroom our bodies just take over. Anyway, i hope your hemoglobin is back in the hundreds, and I wish you the best of luck :)
+Marissa Veronica so happy to hear that! I remember how scared I felt, knowing how much blood I had lost - it still amazes me today how low our hemoglobin can get, and have absolutely no energy to move, but when you gotta go to the bathroom our bodies just take over. Anyway, i hope your hemoglobin is back in the hundreds, and I wish you the best of luck :)
+Effie Siamalekas I wish you the best of luck too! I'm always happy to find people I can relate to ❤️👍
Got Pancolitis may 19th 2017. I needed 9 blood transfusions since then. Got c diff and pancreatitis and been hospitilized for 31 days since I got it. Just been torture since then nearly lost 40 pounds. I am on remicade now and feel alot better. I am so glad to just be out of the hospital. The hospital I went to actually ODed me on Iron. I am still battling with this bs I nearly went insane. Nearly got addicted to dilaudid and have been struggling. Trying to stay positive. Any advice?
oh what a wild ride! I'm sorry to hear this :(
I'm glad you're feeling better and out of the hospital! Yes - stay positive! Surround yourself with people you love and take care of yourself. Eat well, exercise and listen to your body. You got this!
Effie Siamalekas Thank you. I just got back out of the hospital for the 6th time for pancreatitis again :( Got 2 more blood transfusions and got c-diff again. 6 more nights in hospital is no fun. Have you been on mercaptopurine? because that drug makes me nauseas so I got off of it and just take remicade now at 10ml/kg Double dose from last time. I am getting a MRICP to see why I keep getting pancreatitis. It has been so stressful and rough and lost another 10 pounds in hospital. I went from 170 in april and I weighed 124 this morning. Worst experience ever. I need a endoscopy and colonoscopy soon and that should be fun. Not good times but I think I am recovering now :( I hope. How is your UC now? Also they do not know if my UC is crohns or not from the biospy from last colonoscopy. This is bad I hate hospital stays and the pain in unbearable 24/7 in there having like mental breakdowns. Being home is good though. I just need to eat healthy as possible while gaining weight
The good 🙂
1. Black seed oil ( unfiltered, organic ), combined with raw honey. 1 teaspoon of each, once or twice a day.
2. Drink Bale fruit powder in water or Bale tea.
3. Eat plenty of fruits.
4. Eat small meals.
5. Stay hydrated.
6. Meditate, hypnosis, or do sessions of deep breathing.
The bad😩
1. Don't eat dairy.
2. Don't eat junk food or sugary refined carbs.
3. Be careful with nuts and seeds, and be aware of allergens. Peanuts are the devil to me 🥜👹!!!
4. Don't over eat. Intestines are flared, let them relax.
5. Try and eat gluten free.
And last but not the least tip. If it works adapt.
Wish you all the best. And may you heal fast.
Thank you for posting. This video is amazing and your story was very well told. Thank you again.
+Tiffany McIntire awh thanks for watching!!! :)
Thanks for sharing your story. i was diagnosed a year ago and although relatively mild symptoms now that I'm on meds i fear for the future and what i should be eating differently now. Take care and thanks again.
Lou G. How's things going?
Remicade is the shit!
2 and a half years since i was diagnosed with pancolitis, I'm currently taking 75mg of 6mp (Mercaptopurine) with very minimal side effects.
Mary Fitzgerald what are your side effects
ENTYVIO is the better and SAFER stuff.
Great! I'm having flare ups this year all of a sudden. Didn't know there were meds for it.
I subscribed. Not because I have (survived) Crohns disease, but I really think you're giving a very detailed story , yet short enough to keep watching... lol. I mean not boring or something. Lets make this a (recovery) bowel disease channel.... A lot of positive comments... SUBS WILL FOLLOW. Hold on to this positive energy ! ✌💪💯
eehhhh. By the way, do you like bananas ?... 😂👍... (very healthy and good)
+Jose Pescador Now I see .... it's the mirror... Looked like two posters of bananas.... lol. Anyways, added this video in a ' bowel-disease ' play list , if you don't mind.... Keep up the positive energy. Very good .
+Jose Pescador hahah I was wondering why you were asking me about bananas. But I do like bananas very much... Which is why I stole the poster from the subway. You can't tell from far away, but the poster is actually advertising getting checked for std's lol
+Effie Siamalekas scrolling through comments..... 'awkward' ...
Great video. I'm 2 years into my UC journey.
I also wanted to mention what I suspect to be a causal factor for many people in inflammatory bowel diseases. Less than two days after our daughter's second round of 7 vaccine doses at 4 months old, she woke up with MUCH cylindrical shaped mucous in her stools and started throwing up her milk based formula, so we switched her to soy. When starting solids, she threw most up and at 14 months, had a severe reaction to peanuts. I always knew it started with the vaccines, even though I continued letting her be vaccinated because of denial and pressure and obnoxiousness from the doctor; I switched doctors less than a year later, happily. Our son had a similar experience about 3 years later. The vaccine schedule has more than tripled since I was little, and I had never heard of severe peanut allergies or autism as a child because they were so rare. Great researchers on vaccines and their side effects are Dr. Suzanne Humphries, Dr. Sherri Tenpenny, Dr. Meryl Nass, to name a few.
Vaccines are not causally related to autism. There is no study that showed that there is a causal relationship . It may be correlated, but that doesn't mean it's the cause.
I just wanted to say all the best and hang in there. I got UC at age 16 and here I am 37 years later. Still have it, still need pills to maintain remission. I have good days and bad days still, but not as bad as when it first started. Keep your chin up. Stay well.
Thanks for the kind words, +Learjet66 :) hope you are well!
you think it is possible to mentain remission without pills?
A few lucky ones can. I definitely can't. Pills are better than flaring any day.
I'm 10 and I have UC too and girl I feel you I was in the hospital for almost my entire spring break wich is a month and it hurt and now I take " pentasa mesalamine and a whole bunch of other crap I would literally almost faint at school cause they could figure out what I had, I would be tardy like every day because I didn't have enough energy to get to the door so I would sit in the cold cause I literally couldn't get up and no body cared! I was always pale and stuff and my dad would pull me out of school and my teacher thought I was faking it and would roll her eyes!
Great video! I have Crohn's and I know what a huge struggle IBD can be! Stay strong girl! :)
You too! Thanks girl!
Great video! I'm sorry you got Ulcerative colitis, I have Crohns disease since I was 13 so I know what you're going trough :( It's not fun. I hope you're doing well. I'm subscribing btw! I make videos about my disease too but they're in swedish haha
First time seeing this video. How are you doing now? I'm 47 and was diagnosed in 1988 right out of high school and eventually lost my large intestines in 1991. I had an ileostomy for about a year and eventually J-pouch reattachment surgery. I hope you are doing much better now. It's a terrible disease, but I would imagine the medicine today is much better than it was back in the late 80's and early 90's, but sounds like you are doing same treatment I was going through for the most part. Not much of a you-tuber, but would be happy to answer any questions you have. I just found out my niece was diagnosed at 20 yrs old...so sad. Hang in there and I hope you beat this or at least get it under control and is manageable for you.
Hey! I'm doing fantastic. I'm off of imuran and still feeling great with remicaide.
Yeah I think i'm pretty lucky to have gotten UC now rather than earlier on. They seem to know how to manage it with medicine (for the most part). I find that a plant based diet is working very well for me :) I hope you're niece is kicking colitis in the butt! Sending my love to you guys!
Hi it's good to see I'm not the only one dealing with UC. I wanted to say that the Prednisone you're taking can help but please!!!! Talk to your doctor about other alternatives for your inflammation, because taking so much can cause your bones to become brittle. it damaged my mom joints to the point she had to have a total hip and knee replacement. I've just started new treatment that's called humira and I can already see some improvements, it helps with inflammation and the UC also arthritis which I've developed from the UC you should most definitely talk to your GI Doctor about it. Hope you'll get better stay strong!!
+marie styles hey! Yes I know the steroids are really bad for you. But it is better than my colon not healing. It's good cause it gets the job done quickly and effectively (and at a low cost). Hopefully I won't need to go back on prednisone if I so get another flare up, because it will (hopefully) never get that bad again, because I can monitor it and control it with diet, now that I know what it is :). And yeah I've heard great things about humera too! There is no reason for me to change my treatment right now, because the remicaide is still working beautifully. But I will definitely explore the option of humera if there comes a time where I might need to switch off of the remicaide:) glad you're seeing improvements!
+marie styles hey! Yes I know the steroids are really bad for you. But it is better than my colon not healing. It's good cause it gets the job done quickly and effectively (and at a low cost). Hopefully I won't need to go back on prednisone if I so get another flare up, because it will (hopefully) never get that bad again, because I can monitor it and control it with diet, now that I know what it is :). And yeah I've heard great things about humera too! There is no reason for me to change my treatment right now, because the remicaide is still working beautifully. But I will definitely explore the option of humera if there comes a time where I might need to switch off of the remicaide:) glad you're seeing improvements!
+marie styles hey! Yes I know the steroids are really bad for you. But it is better than my colon not healing. It's good cause it gets the job done quickly and effectively (and at a low cost). Hopefully I won't need to go back on prednisone if I so get another flare up, because it will (hopefully) never get that bad again, because I can monitor it and control it with diet, now that I know what it is :). And yeah I've heard great things about humera too! There is no reason for me to change my treatment right now, because the remicaide is still working beautifully. But I will definitely explore the option of humera if there comes a time where I might need to switch off of the remicaide:) glad you're seeing improvements!
You just inspired me to make my own video telling my story! I look forward to seeing more videos!
+Afrodeity haha yay! The more the better! This is a great way to raise awareness :) I'll keep an eye out for your video!
I was symptom free for over 10 years when my house was invaded while I was home. I was able to repel their attack (shots fired), but within a couple days of that stress my UC came back and has been with me for closing in on 3 months.
I am worried that my employer thinks I am lazy or unreliable. Our benefits are good so I am thinking about taking some medical leave, but though I feel weak at times I haven't felt hospitalizable. Blood test (unrelated) had good numbers so I feel like I am suffering, but just not quite enough to deserve the time to heal. :/
Thank you for sharing your UC story. I was diagnosed this week with UC.
you're welcome! i hope my channel helps you :) how are you feeling?
Hey! I'm 16 and was diagnosed with UC around 5 years ago... It is literally the worst thing but it's actually so comforting seeing someone else young and normal dealing with the same thing. I've tried so many drugs but my body reacts really weirdly sometimes, I was on prednisone for a month or two but it ended up making me really sick. Hopefully you find something that works for you! Wishing you the best! Is there any way we can touch?? I'd love to chat to someone going through the same thing :)
Thanks Isy! Yea we can definitely chat - you can direct message me through Instagram or Facebook. You can find the links on my channel under the 'about' section :)
My doctor gave me medicine when I was diagnosed and it did work, however it came back a couple months later. After researching on my own, I've found grains were the main reason. I've had UC for just over a year now and am still learning how my body reacts to certain foods but I have no symptoms when I cut out grain. I've even had gluten free pancakes and cookies (which normally would effect me terribly) with good results. If you have UC please adjust your diet to cut out grains, especially gluten. It made all the difference for me. Feel free to contact me if you wish.
Yep been there and done that. Although 3 years after I was diagnosed I spent 3 months in the hospital because of a flair. I always have another disease that is really rare and it affects all of my organs, but first hits your kidneys. So when I was 16, and hit this really bad flair of my UC, and pooping so much it made my kidneys worse. So my iron was also really low, and because of the kidney issues I wasn’t able to have a blood transfusion as that creates antibodies in your blood. And I knew I was going to need a kidney transplant sooner rather than later. Antibodies are a big no no. So I ended up having Iron infusions pretty much every 3 weeks. But thankfully the prednisone worked for me. I had my transplant actually four years this past week. And prednisone is one of my transplant medications that I have to on for the rest of my life. Only one 5mg a day, but that’s enough to keep my UC under control. Which is good because the medications given to help control UC are bad for your kidneys. So I can’t really go on anything. But since that really bad flair up when I was 16, I’ve been good. That was 10 years ago.
What a wild ride you've been on! Glad you're okay now!
I was misdiagnosed with ulcerative colitis 18 years ago and suffered terribly on and off for 17 years until I figured out with the help of a naturopathic doctor that I actually had Parasites the whole time!
Thats crazy! I have also heard from some people who suffer from the same symptons, that it was actually parasites the whole time! Hope it's all taken care of now. That's a long time to suffer when you really dont have to be! Ugh....
I live in BC aswell and just got diagnosed with UC last week , I honestly don't understand how I got it because I wasn't going out much the last 2 months . I still believe there's a way for it to go away eventually (yes I may be naive) but there isn't enough research about UC to say otherwise , they don't know how you get it or how to get rid of it so how can they say it'll never go away if you control it and eventually stop the meds .
no, you're right! There is a lot of research going into this. I'm just as hopeful as you are about eventually stopping medication
Do you think you can make a video on what you eat with UC, my brother has UC and i want to know what to make him so he doesn't hurt. Thank you and stay strong!
right now i eat basically everything. but i did keep a food diary from when i was flaring and it was pretty strict. i definitely plan on making one soon!
Alison Morales I was diagnosed when I was 6 and I'm now 13. as far as diat can go it is different for every person but if you need advice try and stay away from rich and spicey foods and foods that are too much of anything. also acidic things don't eat because they cause problems
you can make this every morning before breakfast: Aloe, green apple, pineapple and cucumber. it is going to help him a lot. hope your brother heals. love from another UC fighter. love
Alison Morales have a look at www.lowdosenaltrexone.org
I lost some of my childhood friends due to not wanting to be able to hang out. They just don't understand.
That sucks man, I hope you found people to hang out!