Thank you. People really don’t understand how hard it is living with this condition. It really is challenging. Everything you said is spot on. Especially the suffering in silence and people thinking you are fine and it’s not a big deal. But that day to day not knowing what your body is going to do or how it’s going to react is so hard mentally and physically.
100% Thank you for taking the time to watch & reach out, I couldn’t agree with you more !! This condition is exhausting in every way & it’s very difficult trying to explain that to anyone who doesn’t have it themselves. Always good to know I’m not alone ! 💕
I’ve had symptoms since I was 15, but was misdiagnosed with IBS for years. It wasn’t until I was 21, I broke down crying in my car because I couldn’t eat anything anymore without pain or urgent bathroom trips. I’m 25 now and still struggling. It sucks but we all have support together. I’m also a member of the MC forum! Thank you for the video. It boosted my mood. 😁
I’m with you. I was diagnosed with IBS over 35 yrs ago and then a GI did a colonoscopy and didn’t do a biopsy 😡 that was in 2011 and then 2015 went to a new GI and he did a biopsy and found my CMC. I’m still dealing and now starting a new drug. I was on Mesalamine and don’t think it was working for me. See a new GI on weds.😔
Dr. Eric Berg says to do carnivore for a month to reset your digestive system. Watch Comraderie Carnivore on youtube - he takes phone consults for $30 for a half hour; $50 for one hour. He's young but very knowledgeable. I know it's hard to do but at least give it a good try to stay well. I had an irritated bowel for 8-10 yrs but it has improved a lot with experimenting on my diet. I quit dark greens, lectins, gluten, sugar, erythritol, plus I fast daily for 16 hours (no bkft). It seems that doing Carnivore would be so unhealthy but it's actually very healthy - just watch some youtube videos.
Bless your sweet heart, your words imitated my life. I’m new at this too. Lost 25 lbs before diagnosis. Finally diagnosed and the panic attacks ensued! Scared to eat anything. Yup everyone’s like “wow” you look so good, that’s after not working at my own shop I built fur 16 years! I was never going to return. That’s was almost 2 months ago. I’m back now, wont commit to more than a couple hours a day. I applaud you guys/gals for speaking out as it is a very lonely existence. I’ll continue to watch you and everyone that speaks of this terribly yucky topic! Totally sucks! Much love to us all!💕🌸💕🌸💕🌸💕
Ive been dealing with this for 12 years. I am glad you addressed that one day you can eat something and the next day your body completely rejects it. I don't want to eat "weird food" or something new at work, so I'll eat stuff I normally eat, but damned if every day after work I come home with either a stomach ache or the shits or I look 9mo pregnant. It totally sucks.
12 years ! So I can definitely learn a lot from you ! Thank you for taking the time to watch me ramble on about this illness. Glad you can relate its such a comfort. I tend to eat the same thing almost every day because I’m terrified to try anything new, and even the “safe” foods still hurt to digest. It’s such BS! Have you reached remission yet ? Please keep in touch !
Thank you so much for this. I will be sharing it with my family because ... stress. I was just diagnosed 2 weeks ago. All my symptoms began when I had covid in March of 2020 so 13 months of trying to figure this thing out. I've already order Wayne Persky's book. It should be arriving this afternoon and I'm so excited to read it so that I can understand. Chronic illness is AWFUL! Especially when people tell you that you look "fine." Ugh. So thank you very much for putting out such a concise relatable video so that I, and my family, know that I'm not alone. ❤️
I just got diagnosed with lymphatic colitis (the other form of microscopic colitis) today after so many years of figuring out what was causing all my symptoms (mainly gassiness, abdominal/belly pain and discomfort, loose stool) and I am elated to finally have an answer!! Going to get that book you recommended right away too!
My vegan glutenfree diet helped a lot. But it backs with stress. I got it under pressure of work and education, fuck them all, put your health on the top of the list
Praline, thank you so much for making these videos. I was diagnosed with CC last week. I started researching in medical journals and now have found your videos. Like many others, it has also taken me a few years to get a correct diagnosis. And, like you, mine started from food poisoning! Starting to research it, I am confounded as to how I could have been misdiagnosed for so long. My list of symptoms is verbatim from CC papers and articles. It is what it is... we live, we learn and now we deal. And, on the journey we support others! Congrats to you for pushing forward. Thank you for your support to countless people, Praline!! You don't even know the amount of people you may be helping! Thank you again for your tips, suggestions, and real attitude !! ❤️❤️❤️
My apologies for my late reply ! Thank you so much from the bottom of my heart for your sweet comment , it made me tear up for sure !! I haven’t made videos in awhile but knowing that I’ve helped just one person in anyway feel better with this awful condition makes me so happy. Can’t believe how long you had to suffer before a proper diagnosis 🤦🏻♀️ thankful you have one now and I’m hoping that as time passes it becomes easier for you to navigate your way through this. Always stay strong and never give up ! Sending you lots of love and support ! ❤️
Thank you for making this video. I'm been in this since covid started. I needed to hear other people talk about our sickness. People and the medical field just don't know what we are going through. Thank you again.
Started vigorously nodding when you said “people saying oh but you look great” 😒 I don’t have dairy or any processed foods. I eat clean as well as going to the gym to combat the stress as that brings mine on really bad. I can’t have oily fish, spices or fresh fruit juice. Thank you for this video. There isn’t many that focus solely on microscopic Colitis ❤️
I am so happy that I found you on RUclips. I have had microscopic colitis collagenous colitis for four years now and I am in a flareup right now. It is so embarrassing to have to constantly be near a toilet to be fearful of whatever I eat in public if I'm going to have to run to a public restroom.... so basically this has made my life very small. And then finding you on RUclips someone that shares the same chronic illness has made me feel less alone and I can't tell you how happy that makes me. I really appreciate you
Juat got diagnosed after 4 months of severe symptoms...have lost 17lbs and have been on medical food for 3 months. Thank you for sharing your words of wisdom and encouragement!!
Thanks for the video! Got diagnosed today, never heard of it before. Now due to covid-19, you just get an phonecall and thats it. Your video was golden for it 👌🏻 thanks!
Thank you. This was so helpful and almost made me cry. Im 18 and just got diagnosed with this and I feel so frustrated and fed up with constantly having to go to the bathroom in so much pain. Im sick of this. This helped me feel less alone, especially because I was under the impression that only elderly people got this,
Hiiii ! So glad to hear that my video helped in any way. You are NOT alone ! I have learned that this illness can affect all ages and both men & women. I would love to hear about your journey to diagnosis and how you are managing this illness? Would love to help any way that i can and give you some relief because i understand your frustrations 100% . Please keep in touch , you can always reach me via email as well Pralinenoel@gmail.com if you like. Take care & talk soon :)
I appreciate all you have to say. You are a great support to me. I watch all your videos. Please keep up the great work! I am doing better because of you.
I am so late in responding to this very sweet message and i am so sorry ! I remember the day i received this message it made me cry in a good way! Thank you for saying this, thank you for watching and thank you for the support it means so much to me. I promise i will start making videos again and would love to hear your journey with this illness! xoxox
I was diagnosed yesterday after 2 years of the awful symptoms. I am fortunate to not have any weight loss from this, though. My case is very unique and it was a hard road to figure out what was the matter. Thanks for the video.
I’ve been dealing with this for 5 years and you have grasped a lot in a year. One thing I learned the hard way was getting on the steroid merry-go-round. As soon as you come off, the symptoms are likely to return. Meanwhile, you’re dealing with all the side effects of the steroid. It’s a beast of a disease and it’s good to see you taking it to RUclips. Stay strong.
Thank you for reaching out and taking the time to watch my video i appreciate it. I'm very new to this disease but i agree it is a beast and in just a year has changed my life completely. I have yet to go on steroids, My Dr. says they are a last resort because of what you described; the symptoms returning,side effects etc. It's a roller coaster every single day which I'm sure you know after 5 years of dealing with this, you stay strong as well and i wish you more healthy days !
@@StomachSister hi Praline I was prescribed Budasonide Dr ER 3mg, started taking it 5days ago, hasn't helped me at all GI Dr wants me to take it a few more days. Let's see what happens. I've had diarrhea since March...
@@carmenzavalza546 I got the same prescription but my Dr told me most patients see results after two weeks or more. I'm in for an 8 week treatment. How did yours go?
Totally. The first thing my Gastro Dr put me on was Budesonide. Was at the height of my disease and panic attacks ensued, couldn’t work, having a really hard time functioning and very emotional! Then too that off with a steroid! Lucky I wasn’t homicidal or suicidal!🤦♀️. That was when I left work beginning of new year. The detox of the 9mg was horrible for like a whole weekend. When I spoke to her that #1 after a few weeks it did nothing. Then the detox was horrific. She looked at me like I had three heads. Well it should only affect your gastrointestinal not your emotions. Ya ok right! And then to find out I could only be on that for a few months then off then on! Holy hell! Thanks but no thanks.
Thank you for your video Praline. Yours came up first when I searched for MC. Suffered for many years, only being diagnosed now. Finally have answers x
sm au again thank you so much for taking the time to watch. Hope they help you know you aren’t alone in this ! I am glad to hear that you finally have a diagnosis after suffering for so long from the symptoms. How are you feeling now ?
Praline Noel Hi, I have a number of autoimmune conditions that I have had for nearly 20 years. I am a little disappointed that my specialist didn’t take my symptoms seriously over that time, and that it’s taken this long to get diagnosed. I’ve been on steroids for the other conditions off and on over the years which probably kept the MC suppressed. I am very lucky to have an excellent GI doctor now. I saw several GI previously who missed the diagnosis. It is a shock when they finally work out what’s going on. Thanks for asking x
sm au sorry for my late reply. Thank you for sharing! Having a great GI is so important and I’m glad you’ve found one that was able to take your symptoms seriously and finally give you answers and a diagnosis. You are a chronic illness warrior dealing with multiple auto immune diseases ! Stay strong and I’m wishing you more healthy days. Thank you again for watching !
took me 3 years to figure it out. today we did and i can relate to everyhing you said. it actually made me cry to hear someone else say it. i’ve lost 70lb and i started this in a really stressful period of my life and i already knew this played a factor. but to hear you say it was really nice. i’ve been so sick and in pain for 3 years... i’ve also became super intolerant to gluten. I get sick for 4 days. anyways thanks for the video🙌
Hey 👋🏼 Thanks so much for reaching out and sharing with me I truly appreciate it I do apologize for my delayed response but I am going to get better at being more consistent with this. It made me tear up hearing how you had an emotional reaction to watching my video and being able to relate so deeply to my experience. It was definitely hard for me to admit to myself how tremendously stress had affected my health I’m still working on that. It breaks my heart to hear how you’ve been suffering for three years, have you seen any improvement? If you feel comfortable sharing I would love to hear about your journey to diagnosis and what your treatment plan for yourself is like these days. I have said since the very beginning when I didn’t really know much about this illness that diet was going to be everything & it’s truly helped me have less painful days and fewer intense flares. I’d love to talk to you and maybe help you figure out what foods are triggering you so we can get your quality of life back. I’m here to talk always. Thank you again for watching and for reaching out I look forward to hearing from you, take care!
Ty for sharing. Mine is pretty bad. I feel like I can’t leave home. On top of it I lost my ability to walk the past year. I’m battling more than one illness I do feel alone I’m 46 most people think I’m younger when they see me. I guess that’s good but it seems I’m falling apart on the inside. I too feel like I’ve always had a really tough life. I’ don’t have the will to live it’s too much. I’m not suicidal been there done that I did die but they brought me back. Since then I’ve gotten myself in a safer place. I moved home with my parents. And now all this! It never gets easy. Ty for sharing it’s helpful.
Thank YOU for reaching out and sharing some of your story with me. i dont know what other illnesses you have but just MC alone is very overwhelming so i cant imagine the difficulty mentally and physically handling all of these things is for you. I can say with certainty that you are incredibly strong, stronger than you know .. There is a reason you are still here today and i am grateful to meet you (even if its just online). It sounds stupid maybe but, i am here if you want to vent or talk or anything. You are not alone and i will be checking in on you :) Please keep in touch
From Britian and this condition got worse after having a mesh implant put inside of my stomach for a hernia. Also suffered from high stress in my life! Love this video and have subscribed to your channel. I will focus on my health. Thank you. I also do Yoga!
Hi , thank you for taking the time to reach out & for subscribing ! How long have you been diagnosed with this condition? Sounds like your body has been though a lot. The high stress is definitely no good but it's so hard not to stress when your health is so unpredictable. I was thinking of starting yoga has it helped ?
@@StomachSister Yoga calms my body right down also I try to get lots of cardio in and tone my body with manageable weights as well as not trying to do too much and drinking lots of water. There is also serveral 1 hour calming meditation video on RUclips that helps when I get health anxiety attacks! Plus listening to you talk about the colonoscopy helped. I had mine about a year ago the specialist didn't see the M.C as too bad but I'm staying in communication with them just in case.
I am so so happy you finally have a diagnosis after such a long time suffering from the symptoms. I know after my diagnosis i felt so relieved to finally know what was going on with my body. Thank you for reaching out and being so strong! You're definitely not alone, i know exactly what its like !
I'm 20 as well been diagnosed since 17 .. Sick daily lost 35 lbs Total... Been to three docs. Had 3 colonoscopy been diagnosed in first and playing the game myself with the medication...
Thank you for watching and reaching out. You are definitely not alone and I know how you feel. My guilt has taken a lot out of me since I developed this illness. Each day I just try to remind myself that this wasn’t a choice but I can choose to make the best of it in anyway possible. I’m always here if you want to talk I think you actually followed me on Twitter so feel free to DM me anytime if you wanna vent or share your story or anything like that thank you again for reaching out and I look forward to hearing from you!
Im 23 and have had symptoms but just overlooked them for awhile. Wen to G.I and did the testing and got the diagnosis. as someone very into fitness and being a aspiring bodybuilder, it has been devastating. The ability to maintain weight has been so tough, weight literally fluctuates so much regardless of the lymphocytic colitis. Being into bodybuilding, my diet is regimented but is 3500-4000 cals to maintain weight but im now coming to realize its time to make changes with diet. Right now im at 110 fat, 230 protein and 390 carbs. Usually my diet is chicken, ground turkey, eggs, brown rice, broccoli, asparagus, sweet potato, cinnamon bread, rice cake, and for my shake just whey protein, almond milk, greek yogurt, strawberries, and a banana. My GI recommended some medication but i really want to find away to not use medication. Going to see a nutritionist soon. Not sure if anyone has ideas.
Hi, thanks for reaching out and sharing part of your story with me. I am relieved that you have a diagnosis. This illness is so life changing and it sounds like your whole lifestyle has been flipped upside down.. i am so sorry. What meds were recommended by your GI? I know its been a month since you reached out (sorry for my late response) have you been to see a nutritionist yet ? I will say that diet has been key for me in getting any kind of quality of life back. It sucks and its frustrating but i pretty much eat the same 5 things over and over again. Its important to figure out what you are intolerant to and to eliminate it from your diet completely. Gluten is the first thing that most of us get rid of. I recommend getting Wayne Perskys book about this illness, it was a great help to me in the beginning when i felt very hopeless. Please keep in touch and let me know if you have any questions or if i can help!
Thank you for taking the time to watch & for reaching out to me. You are 100% not alone ! What are your primary symptoms? (if you don't mind sharing) and what does your diet consist of these days ?. Please keep in touch !! XOXO
Praline Noel I have consistent diarrhea 5-10x per day. I have cramping, bloat, nausea, anxiety, tons of fatigue but trouble sleeping at night. These are my primary symptoms but not all of it. Major war going on in there. Hell fire gut continually.
@@ametzger62885 Girl, i can definitely relate ! ! especially before i reached a diagnosis and had no idea what to do (eat) or what not to do (eat). I got the book Microscopic Colitis by Wayne Persky and it was really a how-to-guide for treatment. You may want to give it a read ! Once i altered my diet (extremely) and learned what most of my triggers were i did see a vast improvement in my symptoms after a few weeks. I only have diarrhea on occasion now, the hell fire pain has subsided (after i started taking IB guard daily). I still have symptoms daily (same symptoms as you mentioned) but they are not as intense or severe as before. It still sucks though and i have so many days where i just want to curl up in a ball and cry ! I'd really like to help you feel better seeing as how you have been suffering for so long! Please let me know if you have any questions & keep me posted on how you are feeling ! xoxox
@@johncreamer2005 I’m in southern Illinois. I’m about 4 hrs from Chicago, so unfortunately that wouldn’t be convenient but I appreciate the recommendation. 💜
I wonder why you quit making videos. I see so many comments where people gained a lot of support through you. I am very interested in your information and wonder if you moved on to a different platform to share your insight. Thanks Praline Noel. I hope you have living your best life even with MC. That is my goal in life.
Got diagnosed 5 months ago. Did low fodmap diet and Budesonide for 2 months. ReIntroducing normal food about 3 weeks ago. All this has lead to just trading one bunch of symptoms for another. Two Gastroenterologists didn't give much info. On lialda (mesalamine), Pepcid & probiotics now. Constant daily cycle of simultaneous nausea/hunger, eat, feel better for 2 hours and starts again. Mentally drained. I guess I just have to accept this.
I've had to eliminating nightshades, dairy, gluten, beans, whole nuts, seeds, quinnoa and raw veggies. Seems counter intuitive because these are all considred healthy foods but I found they really triggered my symptoms. I do best on very low fiber easily digestible foods like white rice and bone broth.
It took years for me to get diagnosed… I have lost 40 pounds in two years. And you’re right it is like Russian roulette I don’t know how to deal with it sometimes I’m sick I can’t hold my head up…
GREAT CLIP YOUNG LADY!!!!! Ive had lymphatic colitis for years, was finally diagnosed officially last month. I guess for me the fatigue and joint pain are unbearable. Recently prescribed Lialda and steroids.......anyone have spuccess with these? If so how long did it take to start helping?
Thank you very much for watching and reaching out. I have heard from other sufferers that it can take so long to be properly diagnosed. I am glad that you have your diagnosis and can start your health journey from here. For the joint pain i take cbd baths and take the supplement called boswellia serrata twice a day ( i still have pain most days) . As far as steroids go i have zero experience with them so i apologize i cant be of any help there but feel free to keep in touch and if you have any questions ! Take care
Katie Sch it’s a comfort that you were able to relate !! I did this video what feels like life times ago & I’ve learned so much and my symptoms have changed so much since then. My fatigue has always been an issue but I have seen improvements after I severely altered my diet & started taking supplements etc (will do an updated video of what I’m taking daily that’s worked for me) . I still have days where I am so fatigued I literally can’t function . Is fatigue your main symptom?
@@StomachSister I would love to see that video! I have gone gluten and dairy free. I take iron, b complex, and d vitamin supplaments but I still seem to struggle with fatigue and even nausea. It's really nice to know someone else relates! I felt invalidated and crazy before I got diagnosed.
I also felt like I was losing my mind before I got my diagnosis and even when I got diagnosed i had no idea where to start with a treatment plan. I feel you on the fatigue and over all exhaustion.. it’s so hard some days !! Has changing up your diet helped you ? I have to be gluten, soy, dairy and chicken egg free 😒 I pretty much eat the same few things everyday it’s the worst but it is better than feeling like my guts were on fire 🔥 constantly lol
Hey 👋🏼 thanks for watching and reaching out. I can’t imagine the struggle of living with this for so long. I’d love to learn more about your journey & if you have any advice or pointers I’ll take em ! Always good to know we aren’t alone 💪🏼
@@StomachSister Thanks to you for making these videos! My suggestions are to avoid gluten/wheat, dairy and sodas. Exercise or do something you love 2 or 3 times a week to keep the mind and body in peace. That plus leaving a job in which I had a leading position and stress was triggering my MC badly. Also talking openly to people about the disease I have has made it less stressing in case I have a public accident or need a bathroom. I also had SIBO. Since I've been watching all these videos from your channel and other similars, I have commited to the diet and feeling super good. No more pain, bloating... Maybe a coincidence also that I'm under a parasites treatment just because my nephew has parasites and everyone in the house needs to take the pills according to the doctor. But I think the bigger factor has been the diet. Gluten/wheat, dairy and sodas are killers. Wish you good health!
Hi 👋🏼 Sorry it has taken me so long to respond to your comment. Thank you again for watching and for reaching out and sharing your pointers with me. I recently just quit my job as well! And it has made a world of difference not being so stressed out and spread so thin every day. I totally agree with you that diet is everything and openly talking about this disease with others who share in the experience has been such a source of relief for me. How are you feeling these days ???
I HAVE SUFFERED FOR THE LAST 3 YRS. AND THE DR. JUST TOLD ME I HAVE LYMPHATIC COLITIS. I WONDER WHAT THE DIFFERENCE IS FROM MICROSCOPIC AND LYMPHATIC COLITIS IS. THANK YOU AND HOPE YOU ARE DOING OK.
Suffering from this since i was 15 now i am almost 25 so been 10 years.. The worst thing about this disease it keeps coming back no matter how strict your diet is or how good your meds are...
I am so sorry for my delayed response, fell off the face of the earth there for awhile ! lol Thank you so much for reaching out. I have been suffering since 2018 and it feels like its been a decade already. Would really like to hear more of your story and if you have any helpful tips or any info to share. It is worst that it never really goes away and there's no way to prevent it.. i feel you !
@@StomachSister its actually harder to manage in my country ( india) because everything has to be spicy here... I can tell u one thing though which might help.. Stay loyal to your meds they really make a difference in a long run.. After 10 years of disciplined diet and meds i can actually eat outside with my friends pretty much anything i want to..but i don't make it a daily habit.. i don't have diarrhea anymore only 1-2 times max normal BM.. Still have weight problems though so I focus on high protein diets.. The longer you fight this the weaker it gets and u regain control in your life more and more every year.
Atm I haven't been diagnosed with this disease, but I understand the fight everyday. I'm wondering did you get any headaches that lasted forever? Or nausea? Covid has made it insane to get help with any hospital. I'm left to figure out what I have. Hopefully one day the medical field can cure these digestive diseases
Hi , No headaches for me but nausea absolutely! It is one of the worst parts about this illness for me, my nausea can get so bad that i feel sea sick and can't function. Have you had a colonoscopy yet ? I truly hope they can find cures for these GI diseases because they are debilitating.
I was diagnosed with chronic non-specific colitis. I don't where i stand. I rarely have diarrhea symptoms, but once i eat fiber food it causes gas and uneasiness.
budenoside and mesolamine do not for me. I,ve been on a vegan diet for years and now I find out I have microscopic colitis. So many foods to avoid I dont know what to eat!!😥
Could you please list the things you are mentioning. It would help me a lot. Could you please tell me the book I would like to look it up but can’t make out what it’s called x
OMG i am SO sorry i never caught this comment until now !! i feel so bad ! :( The book i mention is called Microscopic Colitis by Wayne Persky you can find it on amazon and ebay. Let me know what info you need specifically and i will get back to you with answers ! again so sorry , have no idea how i overlooked this comment. Please keep in touch :)
Hello, please tell me how much budenofalk can be taken, a year or less? I was also diagnosed with microscopic lymphocytic colitis, I am from Ukraine. The doctor prescribed me budenofalk for 3 months - the first month 9 mg, the second 6 and 3 three, then when I tried to leave the hormone, I started having diarrhea, I had to go back to the hormone, but the doctor says that I need to quit it and try to live without it. that is, you can't drink a hormone all your life?
Hi how is all going? I used budesonide and then I ate rice, some meat cooked with just salt for a few weeks then tried veggies one after another to check if it was ok for my belly. Eliminate gluten, egg, milk, soy. And after you don't have diarreah try to reintroduce one by one and check if it's ok in your belly
How did you get diagnosed with microscopic colitis? It would beautiful if physicians could actually heal people instead of just suppressing symptoms which usually makes things worse in the long run. Steroids are so dangerous, causing scar tissue for one.
Cathryn P thank you for reaching out and I strongly agree with you, I wish they would work on healing instead of using medications as band aids. The disease can only be diagnosed when slides made from biopsy samples taken (during a colonoscopy) from areas of the colon of the patient where active disease exists are examined under a microscope and specifically analyzed with the known markers of microscopic colitis.
@@StomachSister I was told by a G.I. doctor that I needed a colonoscopy so they could scrape the colon looking for micros. colitis. Well I wasn't due to get a colonoiscopy but obliged anyway. Well, the physician,who I reminded just prior to the test that my colon should be scraped, forgot to do it. So the G.I. dr. said I could then have a sigmoidoscopy instead (I had one before and it was miserable). ANyway, I asked what they wouild do for me if I was diagnosed with MC - he would give me a drug (starts with the letter "c"). Do you know what drug he might be referring to? I suppose it's another band-aid. Thanks.
Cathryn P so sorry to hear you’re having such difficulty getting a diagnosis. My GI was the one who performed my colonoscopy and endoscopy procedure and diagnosed me with MC. Unsure why there is a physician involved in your situation? Again they have to take biopsies from the part of the colon where active disease exists and than those biopsy samples have to be tested by a pathologist in order for them to properly diagnose MC. Unsure what the C drug is they are referring to. To my knowledge Budesonide and Prednisone are the most common steroids used to treat MC. Please feel free to reach out with any more questions or concerns you may have & I truly hope you find the answers soon 💖
Did you get tested for celiac cause that can cause microscopic colitis. It’s a blood test. I just got diagnosed for miscroscopic colitis and then tested for celiac and it was positive.
Yes, celiac was one of the 1st things they tested for and it was negative. This illness is rough to say the least , wishing you healing and health ❤️🩹
GI are worthless for any questions; The list of what I can eat is much shorter than what I can't eat. Best things to cut are Dairy Products, Caffeine, all spices, anything that's hard to digest such as salads unless they are cooked to mushiness, anything with oils, stop eating fruits as anything with seeds will produce gas and give you diarrhea. No fast foods where you don't know what's on it. Safe foods, steak, hamburgers, fish, like salmon, stay away from Brown rice, avocados. No Pizza, no spaghetti, no cream sauces; Are you getting the idea? You have to read every label on canned and bottled foods, packages, processed meats, Breads too.
I take vitamin d3, ib guard, Metamucil, turmeric and ginger supplements, Boswellia serrata. These can all be found over the counter or on amazon. I make a tea with all fresh ingredients Ginger, thyme, turmeric, guava and loquat leaves and mint. It helps so much with inflammation and pain. I soak in hot baths with epsom salt Stay extremely extremely hydrated , try out the NUUN tablets (can find anywhere) Rest , absolutely no stress and diet changes are everything !!
POR FAVOR ALGUIEN QUE HABLE ESPAÑOL? NECESITO COMUNICARME CON ALGUIEN , EN MI IDIOMA E ENCONTRADO MUY POCA INFORMACION Y POCOS TESTIMONIOS , PIENSO QUE SOY LA ÚNICA PERSONA QUE SUFRE ESTO : ME DETECTARON COLITIS COLAGENOSA, ( ALGUIEN MAS A BAJADO DE PESO? EXISTE ALGÚN TRATAMIENTO? TENGO 29 AÑOS SOY HOMBRE, QUE TRATAMIENTO ME RECOMIENDAN.? ES MORTAL ESTA ENFERMEDAD ? TENGO MIEDO , ¿CUAL ES LA VERDADERA CAUSA DE LA COLITIS MICROSCÓPICA ?
Hola yo hablo español. Gracias por contactarme. Lamento que estés pasando por esto. Da miedo pero no estás solo. ¿Le han diagnosticado? La colitis colágena no es mortal, los planes de tratamiento son diferentes para todos. Estoy aquí para ayudar.
@@StomachSister gracias por responder, estoy averiguando más sobre esta enfermedad , buscando mucha información llegué a tu vídeo , y me entero que no soy el único q sufre esto y además existen un libro, muchas gracias por la información
Thank you. People really don’t understand how hard it is living with this condition. It really is challenging. Everything you said is spot on. Especially the suffering in silence and people thinking you are fine and it’s not a big deal. But that day to day not knowing what your body is going to do or how it’s going to react is so hard mentally and physically.
100%
Thank you for taking the time to watch & reach out, I couldn’t agree with you more !!
This condition is exhausting in every way
& it’s very difficult trying to explain that to anyone who doesn’t have it themselves.
Always good to know I’m not alone ! 💕
I’ve had symptoms since I was 15, but was misdiagnosed with IBS for years. It wasn’t until I was 21, I broke down crying in my car because I couldn’t eat anything anymore without pain or urgent bathroom trips. I’m 25 now and still struggling. It sucks but we all have support together. I’m also a member of the MC forum! Thank you for the video. It boosted my mood. 😁
Stephen Crane can’t tell you how many cry sessions I’ve had in my car !! Thank you for sharing and thank you for reaching out!
I’m with you. I was diagnosed with IBS over 35 yrs ago and then a GI did a colonoscopy and didn’t do a biopsy 😡 that was in 2011 and then 2015 went to a new GI and he did a biopsy and found my CMC. I’m still dealing and now starting a new drug. I was on Mesalamine and don’t think it was working for me. See a new GI on weds.😔
Dr. Eric Berg says to do carnivore for a month to reset your digestive system. Watch Comraderie Carnivore on youtube - he takes phone consults for $30 for a half hour; $50 for one hour. He's young but very knowledgeable. I know it's hard to do but at least give it a good try to stay well. I had an irritated bowel for 8-10 yrs but it has improved a lot with experimenting on my diet. I quit dark greens, lectins, gluten, sugar, erythritol, plus I fast daily for 16 hours (no bkft). It seems that doing Carnivore would be so unhealthy but it's actually very healthy - just watch some youtube videos.
Bless your sweet heart, your words imitated my life. I’m new at this too. Lost 25 lbs before diagnosis. Finally diagnosed and the panic attacks ensued! Scared to eat anything. Yup everyone’s like “wow” you look so good, that’s after not working at my own shop I built fur 16 years! I was never going to return. That’s was almost 2 months ago. I’m back now, wont commit to more than a couple hours a day. I applaud you guys/gals for speaking out as it is a very lonely existence. I’ll continue to watch you and everyone that speaks of this terribly yucky topic! Totally sucks! Much love to us all!💕🌸💕🌸💕🌸💕
Ive been dealing with this for 12 years. I am glad you addressed that one day you can eat something and the next day your body completely rejects it. I don't want to eat "weird food" or something new at work, so I'll eat stuff I normally eat, but damned if every day after work I come home with either a stomach ache or the shits or I look 9mo pregnant. It totally sucks.
12 years ! So I can definitely learn a lot from you ! Thank you for taking the time to watch me ramble on about this illness. Glad you can relate its such a comfort.
I tend to eat the same thing almost every day because I’m terrified to try anything new, and even the “safe” foods still hurt to digest. It’s such BS! Have you reached remission yet ?
Please keep in touch !
I have lymphocytic collitis
Can you suggest some home remedy for this ,some good food/herbs for this
It’s great to see another chronic illness warrior on RUclips Sharing their story
thank you for the support fellow warrior , means a lot !
Praline Noel 👍
Amen to that!
Thank you so much for this. I will be sharing it with my family because ... stress. I was just diagnosed 2 weeks ago. All my symptoms began when I had covid in March of 2020 so 13 months of trying to figure this thing out. I've already order Wayne Persky's book. It should be arriving this afternoon and I'm so excited to read it so that I can understand. Chronic illness is AWFUL! Especially when people tell you that you look "fine." Ugh. So thank you very much for putting out such a concise relatable video so that I, and my family, know that I'm not alone. ❤️
What helped the most was being told to be kind to myself when I didn't feel well. Thank you. 🌺
Thank you for taking the time to watch 💕 sending much love your way !
I just got diagnosed with lymphatic colitis (the other form of microscopic colitis) today after so many years of figuring out what was causing all my symptoms (mainly gassiness, abdominal/belly pain and discomfort, loose stool) and I am elated to finally have an answer!! Going to get that book you recommended right away too!
My vegan glutenfree diet helped a lot. But it backs with stress. I got it under pressure of work and education, fuck them all, put your health on the top of the list
Praline, thank you so much for making these videos. I was diagnosed with CC last week. I started researching in medical journals and now have found your videos. Like many others, it has also taken me a few years to get a correct diagnosis. And, like you, mine started from food poisoning! Starting to research it, I am confounded as to how I could have been misdiagnosed for so long. My list of symptoms is verbatim from CC papers and articles. It is what it is... we live, we learn and now we deal. And, on the journey we support others! Congrats to you for pushing forward. Thank you for your support to countless people, Praline!! You don't even know the amount of people you may be helping! Thank you again for your tips, suggestions, and real attitude !! ❤️❤️❤️
My apologies for my late reply ! Thank you so much from the bottom of my heart for your sweet comment , it made me tear up for sure !! I haven’t made videos in awhile but knowing that I’ve helped just one person in anyway feel better with this awful condition makes me so happy.
Can’t believe how long you had to suffer before a proper diagnosis 🤦🏻♀️ thankful you have one now and I’m hoping that as time passes it becomes easier for you to navigate your way through this. Always stay strong and never give up ! Sending you lots of love and support ! ❤️
Thank you for making this video. I'm been in this since covid started. I needed to hear other people talk about our sickness. People and the medical field just don't know what we are going through. Thank you again.
Started vigorously nodding when you said “people saying oh but you look great” 😒
I don’t have dairy or any processed foods. I eat clean as well as going to the gym to combat the stress as that brings mine on really bad. I can’t have oily fish, spices or fresh fruit juice.
Thank you for this video. There isn’t many that focus solely on microscopic Colitis ❤️
I needed to hear all of this. Thank you
Wow! You verbalized this better than anyone else I've watched on RUclips. Thank You!
You are so young and I am so sorry to hear you have this condition. I am 74 so not so long to live with it. Thanks for the video. You are a star!
I am so happy that I found you on RUclips. I have had microscopic colitis collagenous colitis for four years now and I am in a flareup right now. It is so embarrassing to have to constantly be near a toilet to be fearful of whatever I eat in public if I'm going to have to run to a public restroom.... so basically this has made my life very small. And then finding you on RUclips someone that shares the same chronic illness has made me feel less alone and I can't tell you how happy that makes me. I really appreciate you
Juat got diagnosed after 4 months of severe symptoms...have lost 17lbs and have been on medical food for 3 months. Thank you for sharing your words of wisdom and encouragement!!
Thanks for the video! Got diagnosed today, never heard of it before. Now due to covid-19, you just get an phonecall and thats it. Your video was golden for it 👌🏻 thanks!
Thank you. This was so helpful and almost made me cry. Im 18 and just got diagnosed with this and I feel so frustrated and fed up with constantly having to go to the bathroom in so much pain. Im sick of this. This helped me feel less alone, especially because I was under the impression that only elderly people got this,
Hiiii ! So glad to hear that my video helped in any way. You are NOT alone ! I have learned that this illness can affect all ages and both men & women. I would love to hear about your journey to diagnosis and how you are managing this illness? Would love to help any way that i can and give you some relief because i understand your frustrations 100% . Please keep in touch , you can always reach me via email as well Pralinenoel@gmail.com if you like.
Take care & talk soon :)
I appreciate all you have to say. You are a great support to me. I watch all your videos. Please keep up the great work! I am doing better because of you.
I am so late in responding to this very sweet message and i am so sorry ! I remember the day i received this message it made me cry in a good way! Thank you for saying this, thank you for watching and thank you for the support it means so much to me. I promise i will start making videos again and would love to hear your journey with this illness! xoxox
I was diagnosed yesterday after 2 years of the awful symptoms. I am fortunate to not have any weight loss from this, though. My case is very unique and it was a hard road to figure out what was the matter. Thanks for the video.
I’ve been dealing with this for 5 years and you have grasped a lot in a year. One thing I learned the hard way was getting on the steroid merry-go-round. As soon as you come off, the symptoms are likely to return. Meanwhile, you’re dealing with all the side effects of the steroid. It’s a beast of a disease and it’s good to see you taking it to RUclips. Stay strong.
Thank you for reaching out and taking the time to watch my video i appreciate it. I'm very new to this disease but i agree it is a beast and in just a year has changed my life completely. I have yet to go on steroids, My Dr. says they are a last resort because of what you described; the symptoms returning,side effects etc. It's a roller coaster every single day which I'm sure you know after 5 years of dealing with this, you stay strong as well and i wish you more healthy days !
@@StomachSister hi Praline I was prescribed Budasonide Dr ER 3mg, started taking it 5days ago, hasn't helped me at all GI Dr wants me to take it a few more days. Let's see what happens. I've had diarrhea since March...
@@carmenzavalza546 I got the same prescription but my Dr told me most patients see results after two weeks or more. I'm in for an 8 week treatment. How did yours go?
Totally. The first thing my Gastro Dr put me on was Budesonide. Was at the height of my disease and panic attacks ensued, couldn’t work, having a really hard time functioning and very emotional! Then too that off with a steroid! Lucky I wasn’t homicidal or suicidal!🤦♀️. That was when I left work beginning of new year. The detox of the 9mg was horrible for like a whole weekend. When I spoke to her that #1 after a few weeks it did nothing. Then the detox was horrific. She looked at me like I had three heads. Well it should only affect your gastrointestinal not your emotions. Ya ok right! And then to find out I could only be on that for a few months then off then on! Holy hell! Thanks but no thanks.
Much love my brothers and sisters. It’s def helpful to have family in this mess of a place!💕🌸💕🌸💕
Thank you for your video Praline. Yours came up first when I searched for MC. Suffered for many years, only being diagnosed now. Finally have answers x
sm au again thank you so much for taking the time to watch. Hope they help you know you aren’t alone in this ! I am glad to hear that you finally have a diagnosis after suffering for so long from the symptoms. How are you feeling now ?
Praline Noel Hi, I have a number of autoimmune conditions that I have had for nearly 20 years. I am a little disappointed that my specialist didn’t take my symptoms seriously over that time, and that it’s taken this long to get diagnosed. I’ve been on steroids for the other conditions off and on over the years which probably kept the MC suppressed. I am very lucky to have an excellent GI doctor now. I saw several GI previously who missed the diagnosis. It is a shock when they finally work out what’s going on. Thanks for asking x
sm au sorry for my late reply. Thank you for sharing! Having a great GI is so important and I’m glad you’ve found one that was able to take your symptoms seriously and finally give you answers and a diagnosis. You are a chronic illness warrior dealing with multiple auto immune diseases ! Stay strong and I’m wishing you more healthy days. Thank you again for watching !
took me 3 years to figure it out. today we did and i can relate to everyhing you said. it actually made me cry to hear someone else say it. i’ve lost 70lb and i started this in a really stressful period of my life and i already knew this played a factor. but to hear you say it was really nice. i’ve been so sick and in pain for 3 years... i’ve also became super intolerant to gluten. I get sick for 4 days. anyways thanks for the video🙌
Hey 👋🏼 Thanks so much for reaching out and sharing with me I truly appreciate it I do apologize for my delayed response but I am going to get better at being more consistent with this. It made me tear up hearing how you had an emotional reaction to watching my video and being able to relate so deeply to my experience. It was definitely hard for me to admit to myself how tremendously stress had affected my health I’m still working on that. It breaks my heart to hear how you’ve been suffering for three years, have you seen any improvement? If you feel comfortable sharing I would love to hear about your journey to diagnosis and what your treatment plan for yourself is like these days. I have said since the very beginning when I didn’t really know much about this illness that diet was going to be everything & it’s truly helped me have less painful days and fewer intense flares. I’d love to talk to you and maybe help you figure out what foods are triggering you so we can get your quality of life back. I’m here to talk always. Thank you again for watching and for reaching out I look forward to hearing from you, take care!
Ty for sharing. Mine is pretty bad. I feel like I can’t leave home. On top of it I lost my ability to walk the past year. I’m battling more than one illness I do feel alone I’m 46 most people think I’m younger when they see me. I guess that’s good but it seems I’m falling apart on the inside. I too feel like I’ve always had a really tough life. I’ don’t have the will to live it’s too much. I’m not suicidal been there done that I did die but they brought me back. Since then I’ve gotten myself in a safer place. I moved home with my parents. And now all this! It never gets easy. Ty for sharing it’s helpful.
Thank YOU for reaching out and sharing some of your story with me.
i dont know what other illnesses you have but just MC alone is very overwhelming so i cant imagine the difficulty mentally and physically handling all of these things is for you. I can say with certainty that you are incredibly strong, stronger than you know .. There is a reason you are still here today and i am grateful to meet you (even if its just online).
It sounds stupid maybe but, i am here if you want to vent or talk or anything. You are not alone and i will be checking in on you :)
Please keep in touch
From Britian and this condition got worse after having a mesh implant put inside of my stomach for a hernia. Also suffered from high stress in my life! Love this video and have subscribed to your channel. I will focus on my health. Thank you. I also do Yoga!
Hi , thank you for taking the time to reach out & for subscribing !
How long have you been diagnosed with this condition? Sounds like your body has been though a lot. The high stress is definitely no good but it's so hard not to stress when your health is so unpredictable. I was thinking of starting yoga has it helped ?
@@StomachSister Yoga calms my body right down also I try to get lots of cardio in and tone my body with manageable weights as well as not trying to do too much and drinking lots of water. There is also serveral 1 hour calming meditation video on RUclips that helps when I get health anxiety attacks! Plus listening to you talk about the colonoscopy helped. I had mine about a year ago the specialist didn't see the M.C as too bad but I'm staying in communication with them just in case.
I have finally been diagnosed after years! I’m 20 years old and have been miserable. It is so nice to see someone else go through the same thing. ❣️
I am so so happy you finally have a diagnosis after such a long time suffering from the symptoms. I know after my diagnosis i felt so relieved to finally know what was going on with my body. Thank you for reaching out and being so strong! You're definitely not alone, i know exactly what its like !
I'm 20 as well been diagnosed since 17 .. Sick daily lost 35 lbs Total... Been to three docs. Had 3 colonoscopy been diagnosed in first and playing the game myself with the medication...
Thank you for sharing Makayla ❤️ it’s so difficult dealing with this condition, especially being so young , stay strong and I’m here for you ! 💕
Has this lymphocytic collitis
Can you tell me medicne you hv taken....are you fine now
Thank you so so much for this video. I have a lot of guilt about being unable to work. Thank you for reminding me I didn't choose this.
Thank you for watching and reaching out. You are definitely not alone and I know how you feel. My guilt has taken a lot out of me since I developed this illness. Each day I just try to remind myself that this wasn’t a choice but I can choose to make the best of it in anyway possible. I’m always here if you want to talk I think you actually followed me on Twitter so feel free to DM me anytime if you wanna vent or share your story or anything like that thank you again for reaching out and I look forward to hearing from you!
@@StomachSister yes, I did start following you on Twitter. Thank you so much for your reply and kind words! I will definitely reach out to you!
Thank you ❤
Thank you I’ll get this book.
I
Im 23 and have had symptoms but just overlooked them for awhile. Wen to G.I and did the testing and got the diagnosis. as someone very into fitness and being a aspiring bodybuilder, it has been devastating. The ability to maintain weight has been so tough, weight literally fluctuates so much regardless of the lymphocytic colitis. Being into bodybuilding, my diet is regimented but is 3500-4000 cals to maintain weight but im now coming to realize its time to make changes with diet. Right now im at 110 fat, 230 protein and 390 carbs. Usually my diet is chicken, ground turkey, eggs, brown rice, broccoli, asparagus, sweet potato, cinnamon bread, rice cake, and for my shake just whey protein, almond milk, greek yogurt, strawberries, and a banana.
My GI recommended some medication but i really want to find away to not use medication. Going to see a nutritionist soon. Not sure if anyone has ideas.
Hi, thanks for reaching out and sharing part of your story with me. I am relieved that you have a diagnosis. This illness is so life changing and it sounds like your whole lifestyle has been flipped upside down.. i am so sorry.
What meds were recommended by your GI?
I know its been a month since you reached out (sorry for my late response) have you been to see a nutritionist yet ? I will say that diet has been key for me in getting any kind of quality of life back. It sucks and its frustrating but i pretty much eat the same 5 things over and over again. Its important to figure out what you are intolerant to and to eliminate it from your diet completely. Gluten is the first thing that most of us get rid of. I recommend getting Wayne Perskys book about this illness, it was a great help to me in the beginning when i felt very hopeless. Please keep in touch and let me know if you have any questions or if i can help!
Thank you! I have had this for 10 years now. I still have no clue what I can eat or what I’m doing. It’s nice to know that I’m not alone.
Thank you for taking the time to watch & for reaching out to me. You are 100% not alone ! What are your primary symptoms? (if you don't mind sharing) and what does your diet consist of these days ?.
Please keep in touch !!
XOXO
Praline Noel I have consistent diarrhea 5-10x per day. I have cramping, bloat, nausea, anxiety, tons of fatigue but trouble sleeping at night. These are my primary symptoms but not all of it. Major war going on in there. Hell fire gut continually.
@@ametzger62885 Girl, i can definitely relate ! ! especially before i reached a diagnosis and had no idea what to do (eat) or what not to do (eat). I got the book Microscopic Colitis by Wayne Persky and it was really a how-to-guide for treatment. You may want to give it a read !
Once i altered my diet (extremely) and learned what most of my triggers were i did see a vast improvement in my symptoms after a few weeks. I only have diarrhea on occasion now, the hell fire pain has subsided (after i started taking IB guard daily). I still have symptoms daily (same symptoms as you mentioned) but they are not as intense or severe as before. It still sucks though and i have so many days where i just want to curl up in a ball and cry !
I'd really like to help you feel better seeing as how you have been suffering for so long! Please let me know if you have any questions & keep me posted on how you are feeling !
xoxox
@@ametzger62885 this is Jeannie what state do you live in? If it is Chicago Dr. Perry Kamel is a great GI doc
@@johncreamer2005 I’m in southern Illinois. I’m about 4 hrs from Chicago, so unfortunately that wouldn’t be convenient but I appreciate the recommendation. 💜
Getting the book!
I wonder why you quit making videos. I see so many comments where people gained a lot of support through you. I am very interested in your information and wonder if you moved on to a different platform to share your insight. Thanks Praline Noel. I hope you have living your best life even with MC. That is my goal in life.
Thank you.
Thank you for taking the time to watch : )
Got diagnosed 5 months ago. Did low fodmap diet and Budesonide for 2 months. ReIntroducing normal food about 3 weeks ago. All this has lead to just trading one bunch of symptoms for another. Two Gastroenterologists didn't give much info. On lialda (mesalamine), Pepcid & probiotics now. Constant daily cycle of simultaneous nausea/hunger, eat, feel better for 2 hours and starts again. Mentally drained. I guess I just have to accept this.
I’m waiting on my biopsies to come back. So tired of the bathroom trips!
I've had to eliminating nightshades, dairy, gluten, beans, whole nuts, seeds, quinnoa and raw veggies. Seems counter intuitive because these are all considred healthy foods but I found they really triggered my symptoms. I do best on very low fiber easily digestible foods like white rice and bone broth.
Josee Roshuk, this is my diet, as well! White rice, bone broth, almond/coconut milk, and rice cakes are my staples.
It took years for me to get diagnosed… I have lost 40 pounds in two years. And you’re right it is like Russian roulette I don’t know how to deal with it sometimes I’m sick I can’t hold my head up…
I just got diagnosed with microscopic colitis its new to me today June 16 2022 I go see I specialist about it and what you say is what I'm going threw
GREAT CLIP YOUNG LADY!!!!! Ive had lymphatic colitis for years, was finally diagnosed officially last month. I guess for me the fatigue and joint pain are unbearable. Recently prescribed Lialda and steroids.......anyone have spuccess with these? If so how long did it take to start helping?
Thank you very much for watching and reaching out. I have heard from other sufferers that it can take so long to be properly diagnosed. I am glad that you have your diagnosis and can start your health journey from here. For the joint pain i take cbd baths and take the supplement called boswellia serrata twice a day ( i still have pain most days) . As far as steroids go i have zero experience with them so i apologize i cant be of any help there but feel free to keep in touch and if you have any questions ! Take care
Yesss 🙌 I can relate to everything you said! Do you suffer from bad fatigue?
Katie Sch it’s a comfort that you were able to relate !! I did this video what feels like life times ago & I’ve learned so much and my symptoms have changed so much since then.
My fatigue has always been an issue but I have seen improvements after I severely altered my diet & started taking supplements etc (will do an updated video of what I’m taking daily that’s worked for me) . I still have days where I am so fatigued I literally can’t function . Is fatigue your main symptom?
@@StomachSister I would love to see that video! I have gone gluten and dairy free. I take iron, b complex, and d vitamin supplaments but I still seem to struggle with fatigue and even nausea. It's really nice to know someone else relates! I felt invalidated and crazy before I got diagnosed.
I also felt like I was losing my mind before I got my diagnosis and even when I got diagnosed i had no idea where to start with a treatment plan. I feel you on the fatigue and over all exhaustion.. it’s so hard some days !!
Has changing up your diet helped you ?
I have to be gluten, soy, dairy and chicken egg free 😒 I pretty much eat the same few things everyday it’s the worst but it is better than feeling like my guts were on fire 🔥 constantly lol
Is it true that if budenofalk stops working, you have to sit on azathioprine?
Another sufferer here. Officially diagnozed almost two years ago. I am 31. Been suffering from it since I was a child.
Hey 👋🏼 thanks for watching and reaching out. I can’t imagine the struggle of living with this for so long. I’d love to learn more about your journey & if you have any advice or pointers I’ll take em ! Always good to know we aren’t alone 💪🏼
@@StomachSister Thanks to you for making these videos!
My suggestions are to avoid gluten/wheat, dairy and sodas. Exercise or do something you love 2 or 3 times a week to keep the mind and body in peace.
That plus leaving a job in which I had a leading position and stress was triggering my MC badly.
Also talking openly to people about the disease I have has made it less stressing in case I have a public accident or need a bathroom.
I also had SIBO.
Since I've been watching all these videos from your channel and other similars, I have commited to the diet and feeling super good. No more pain, bloating...
Maybe a coincidence also that I'm under a parasites treatment just because my nephew has parasites and everyone in the house needs to take the pills according to the doctor. But I think the bigger factor has been the diet. Gluten/wheat, dairy and sodas are killers.
Wish you good health!
Hi 👋🏼 Sorry it has taken me so long to respond to your comment. Thank you again for watching and for reaching out and sharing your pointers with me. I recently just quit my job as well! And it has made a world of difference not being so stressed out and spread so thin every day. I totally agree with you that diet is everything and openly talking about this disease with others who share in the experience has been such a source of relief for me.
How are you feeling these days ???
I HAVE SUFFERED FOR THE LAST 3 YRS. AND THE DR. JUST TOLD ME I HAVE LYMPHATIC COLITIS. I WONDER WHAT THE DIFFERENCE IS FROM MICROSCOPIC AND LYMPHATIC COLITIS IS. THANK YOU AND HOPE YOU ARE DOING OK.
Suffering from this since i was 15 now i am almost 25 so been 10 years.. The worst thing about this disease it keeps coming back no matter how strict your diet is or how good your meds are...
I am so sorry for my delayed response, fell off the face of the earth there for awhile ! lol Thank you so much for reaching out. I have been suffering since 2018 and it feels like its been a decade already. Would really like to hear more of your story and if you have any helpful tips or any info to share. It is worst that it never really goes away and there's no way to prevent it.. i feel you !
@@StomachSister its actually harder to manage in my country ( india) because everything has to be spicy here...
I can tell u one thing though which might help.. Stay loyal to your meds they really make a difference in a long run.. After 10 years of disciplined diet and meds i can actually eat outside with my friends pretty much anything i want to..but i don't make it a daily habit.. i don't have diarrhea anymore only 1-2 times max normal BM.. Still have weight problems though so I focus on high protein diets..
The longer you fight this the weaker it gets and u regain control in your life more and more every year.
👍
Atm I haven't been diagnosed with this disease, but I understand the fight everyday. I'm wondering did you get any headaches that lasted forever? Or nausea? Covid has made it insane to get help with any hospital. I'm left to figure out what I have. Hopefully one day the medical field can cure these digestive diseases
Hi , No headaches for me but nausea absolutely! It is one of the worst parts about this illness for me, my nausea can get so bad that i feel sea sick and can't function. Have you had a colonoscopy yet ? I truly hope they can find cures for these GI diseases because they are debilitating.
No headaches or Nausea....might be IBS
I was diagnosed with chronic non-specific colitis. I don't where i stand. I rarely have diarrhea symptoms, but once i eat fiber food it causes gas and uneasiness.
Sorry for my delayed reply. How were you diagnosed with your non specific colitis? Was it through a colonoscopy?
budenoside and mesolamine do not for me. I,ve been on a vegan diet for years and now I find out I have microscopic colitis. So many foods to avoid I dont know what to eat!!😥
I am so sorry for my late reply. How long have you been diagnosed ? I know it's so overwhelming , i only eat a handful of things safely. It sucks !
Could you please list the things you are mentioning. It would help me a lot.
Could you please tell me the book I would like to look it up but can’t make out what it’s called x
OMG i am SO sorry i never caught this comment until now !! i feel so bad ! :(
The book i mention is called Microscopic Colitis by Wayne Persky you can find it on amazon and ebay.
Let me know what info you need specifically and i will get back to you with answers !
again so sorry , have no idea how i overlooked this comment.
Please keep in touch :)
Hello, please tell me how much budenofalk can be taken, a year or less? I was also diagnosed with microscopic lymphocytic colitis, I am from Ukraine. The doctor prescribed me budenofalk for 3 months - the first month 9 mg, the second 6 and 3 three, then when I tried to leave the hormone, I started having diarrhea, I had to go back to the hormone, but the doctor says that I need to quit it and try to live without it. that is, you can't drink a hormone all your life?
Hi how is all going? I used budesonide and then I ate rice, some meat cooked with just salt for a few weeks then tried veggies one after another to check if it was ok for my belly. Eliminate gluten, egg, milk, soy. And after you don't have diarreah try to reintroduce one by one and check if it's ok in your belly
How did you get diagnosed with microscopic colitis? It would beautiful if physicians could actually heal people instead of just suppressing symptoms which usually makes things worse in the long run. Steroids are so dangerous, causing scar tissue for one.
Cathryn P thank you for reaching out and I strongly agree with you, I wish they would work on healing instead of using medications as band aids. The disease can only be diagnosed when slides made from biopsy samples taken (during a colonoscopy) from areas of the colon of the patient where active disease exists are examined under a microscope and specifically analyzed with the known markers of microscopic colitis.
@@StomachSister I was told by a G.I. doctor that I needed a colonoscopy so they could scrape the colon looking for micros. colitis. Well I wasn't due to get a colonoiscopy but obliged anyway. Well, the physician,who I reminded just prior to the test that my colon should be scraped, forgot to do it. So the G.I. dr. said I could then have a sigmoidoscopy instead (I had one before and it was miserable). ANyway, I asked what they wouild do for me if I was diagnosed with MC - he would give me a drug (starts with the letter "c"). Do you know what drug he might be referring to? I suppose it's another band-aid. Thanks.
Cathryn P so sorry to hear you’re having such difficulty getting a diagnosis.
My GI was the one who performed my colonoscopy and endoscopy procedure and diagnosed me with MC. Unsure why there is a physician involved in your situation? Again they have to take biopsies from the part of the colon where active disease exists and than those biopsy samples have to be tested by a pathologist in order for them to properly diagnose MC. Unsure what the C drug is they are referring to. To my knowledge Budesonide and Prednisone are the most common steroids used to treat MC. Please feel free to reach out with any more questions or concerns you may have & I truly hope you find the answers soon 💖
@@StomachSister Thank you!! It's good to know about the Prednisone, which is not a good drug to take as it doesn't heal, and does cause scar tissue.
@@cathrynp3491
Did you get tested for celiac cause that can cause microscopic colitis. It’s a blood test. I just got diagnosed for miscroscopic colitis and then tested for celiac and it was positive.
Yes, celiac was one of the 1st things they tested for and it was negative.
This illness is rough to say the least , wishing you healing and health ❤️🩹
Getting colonoscopy next month. Don't get stressed - umm I work in child welfare. sigh. Why is the solution to everything to not get stressed?
how to get pregnant with such a diagnosis?
I have MC for 25 years. No one has been able to help.
GI are worthless for any questions; The list of what I can eat is much shorter than what I can't eat. Best things to cut are Dairy Products, Caffeine, all spices, anything that's hard to digest such as salads unless they are cooked to mushiness, anything with oils, stop eating fruits as anything with seeds will produce gas and give you diarrhea. No fast foods where you don't know what's on it. Safe foods, steak, hamburgers, fish, like salmon, stay away from Brown rice, avocados. No Pizza, no spaghetti, no cream sauces; Are you getting the idea? You have to read every label on canned and bottled foods, packages, processed meats, Breads too.
I have lymphocytic collitis
Can you suggest some home remedy or natural herbs for this
I take vitamin d3, ib guard, Metamucil, turmeric and ginger supplements, Boswellia serrata. These can all be found over the counter or on amazon.
I make a tea with all fresh ingredients
Ginger, thyme, turmeric, guava and loquat leaves and mint. It helps so much with inflammation and pain.
I soak in hot baths with epsom salt
Stay extremely extremely hydrated , try out the NUUN tablets (can find anywhere)
Rest , absolutely no stress and diet changes are everything !!
@@StomachSister ohk thanku thanku
Now you are completely better?
Assu Rawat my symptoms have improved but I suffer every day
Oh So sad, okayy
POR FAVOR ALGUIEN QUE HABLE ESPAÑOL? NECESITO COMUNICARME CON ALGUIEN , EN MI IDIOMA E ENCONTRADO MUY POCA INFORMACION Y POCOS TESTIMONIOS , PIENSO QUE SOY LA ÚNICA PERSONA QUE SUFRE ESTO : ME DETECTARON COLITIS COLAGENOSA, ( ALGUIEN MAS A BAJADO DE PESO? EXISTE ALGÚN TRATAMIENTO? TENGO 29 AÑOS SOY HOMBRE, QUE TRATAMIENTO ME RECOMIENDAN.? ES MORTAL ESTA ENFERMEDAD ? TENGO MIEDO , ¿CUAL ES LA VERDADERA CAUSA DE LA COLITIS MICROSCÓPICA ?
Hola yo hablo español. Gracias por contactarme. Lamento que estés pasando por esto. Da miedo pero no estás solo. ¿Le han diagnosticado? La colitis colágena no es mortal, los planes de tratamiento son diferentes para todos. Estoy aquí para ayudar.
@@StomachSister gracias por responder, estoy averiguando más sobre esta enfermedad , buscando mucha información llegué a tu vídeo , y me entero que no soy el único q sufre esto y además existen un libro, muchas gracias por la información