COLLAGENOUS COLITIS 📚 BEGINNERS GUIDE
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- Опубликовано: 1 авг 2024
- Hey guys 👋🏼 hope this video helps anyone newly diagnosed get a better idea of what they are in for living with collagenous colitis. Please feel free to comment below anything else you’d like to add !! The more info out there the better. Thanks for listening and let’s grow this chronic illness fam!!💪🏼💕
Thank you 🙏🏽 just diagnosed and taking Budesonide. Your channel is so valuable and an amazing source of information about this condition. Learning so much. Have a wonderful day.
Thank YOU for watching & taking the time to reach out! I would love to hear your journey to diagnosis if you'd like to share.
So glad this channel is helping you ! That's what i'm here for :)
please keep in touch
xoxo
You are something special! ❤️You have been a big reason I get up and TRY every day. It took me 2 months to be diagnosed. The dr said “see how things go” wtf! I felt and still feel lost. The diarrhea ALL time for months ( thankfully has let up. I agree with your video you did not long ago... remission is bullshit) The doctor acted like it was no big deal. I thought my life with my husband and our family was over. I went for my “check up” yesterday and asked why I am constantly bloated. Extremely bloated in my abdomen even around to my back. Doctor said that wasn’t part of microscopic colitis. If someone else has major bloating please let me know. This is all so hard. Yes, brain fog, pain ect. 😢I stopped taking Budesonide. The side effects were scary and it didn’t even work. My skin and hair are so dry. I look and feel like a monster. Sorry, I have no one but my husband to talk to about this. He is my best friend. I didn’t mean for this to be so long. Thank you Praline for all of your videos. I can’t believe you don’t have more subscribers. You will girl! ❤️
I also get really bloated and look like I'm prego especially during that time of month. I HATE IT! Feeling like a 🐳 is a big trigger for me. I'm sorry you have to experience this 💩 too. Getting off steriods and using natural remedies made such a difference for me. I remember thinking that my doctors were trying to torture me when I was taking budesonide. I ended up gaining 30 pounds even though I was so sick that I stopped eating for weeks. It also made me a little crazy and I definitely don't need help with that! I no longer take any type of FDA approved 💊 or man made medicine but I did take pepto 4 times a day after I got off the steriods. Whenever I feel bloated now I usually drink some ginger 🍵 with turmeric or I will eat raw ginger. I hope you start feeling better soon! Much love and light!!!
144000lightworker Andrea thank you for the tips. We all need to help each other. My husband was just talking about planting ginger root. We live in northeast PA and not sure how it would be in this weather. You take care.
Oh gosh sending you lost and lots of love. I have CC and when I'm having a flare up I'm SOOO bloated I look like I'm pregnant! You're not alone xx
Sarah Bryson sending ❤️❤️❤️❤️to you too!
SUZI !! I probably read your sweet comment over 15 times ! DO NOT ever be sorry for long comments sharing your story ! that's what I'm here for
Very good video. Your comments about this disease were right on. Thank you. And to Suzy - yes bloating is a significant and uncomfortable symptom, especially when the gas is trapped and sits there pressing against inflamed intestines.
Thank you !
Thank you so much for this! Just diagnosed this week and have started Budesonide after more than a year of symptoms. It is so great to know I am not the only one! Thank you for sharing your experience and helping us all!
You're fantastic. I've binged all your videos. It was amazing to hear everyone in the comments agreeing with the symptoms and difficulties of this disease. I'm so grateful when you say, "I'll try to get back with everyone." I feel like that's me all the time. I'm exhausted. I'm working on not feeling bad about how tired I am but sometimes it just takes over and there is no amount of motivation able to change that. Thank you for putting out these videos.
I love these videos, Praline! It also helps those around to better understand what our loved ones are going through. Love you so much!
I love you so much !!! Thank you for always being there for me and continuing to support me in all aspects of life !!!
xxoxoxox-
Waffle Sister
THANK YOU! Thank you so very much for this video. I was diagnosed with CC last October and am still finding my way. You're such a huge help and an incredible person.
Hi Sarah ! You are so sweet 💕, Thank YOU for taking the time to watch and reach out. Welcome to the fam lol
I still feel lost as well it’s just always good to know there are others on the same path 💕 always here , please keep in touch !
Thank you so very much for your videos. I have seen 3 of them, has helped a lot... I am 72, I have been dealing with this for over a year... Just diagnosed in January... So far I am trying to find my way... Thank you again
Omg! Thank you so much for this video! I just got diagnosed with Microscopic Colitis and I relate with everything in this video! Your videos really help me feel less alone in all of this.
How are you Hannah!? So sorry its taken me weeks to get back to you. Thank you for reaching out, it makes ME feel less alone ! : ) please let me know how you are doing !
xoxox
Hi Praline! I’m so glad I found you. Thank you!!
Enjoyed your video. Recently diagnosed with CC after being diagnosed with ulcerative colitis 20 years ago.
Very helpful. I’m
Not alone
Stumbled across your video thank you for your candid and informative video. I’ve had off and on for about 15 years issues with my pancreas from what I was told and then IBD. The last 17 months have been hell for me. I’ve gone through four different G.I. doctors and hopefully I’m on my last one with UCLA. Ive had doctors hang up on me and doctors telling me it’s in my head to take pepto bismol. I’ve recently been diagnosed FINALLY with collagenous colitis. Over the months I have been prescribed the go-to budesonide, mesathalamine, chloestrymanine and a couple other meds I can’t recall. I can’t take bismuth makes me sick. My condition is resistant to all of the above. I almost lost my job due to excessive absenteeism because I just cannot leave my home. My brain fog is so bad that I am making too many mistakes. My average BM‘s if that’s what you call it because mine are pure water. I am severely dehydrated and my fluid loss is more than I can replenish. In my recent colonoscopy, I had a cardiac event and I was immediately referred to a cardiologist the next day as my heart was beating very fast. Bloodwork was done and my potassium tanked. I am afraid of what my next step will be since none of my medication’s have worked for me. I’ve tried gluten-free, dairy free, I’ve gone back to junk food, healthy food and the results are all the same with the severe pain and sudden bloating, I have severe joint pain. I’ve gone to the ER multiple times for fluid replenishment. I just wish someday I will have a normal life, be able to go out on the whim and go shopping with friends and exercising and not worrying about messing my pants in the meantime. I have been incontinent and wearing protective undergarments a.k.a. diapers for more than one year and it’s the pits I hate it.
OMG THANK YOU! I just got diagnosed with this, there’s nothing on it. Thank you!!!!
First off you are super special and second off you are so on point with explaining the symptoms . I have bad GERD and IBS and the nausea is my enemy it ruins everything but yeah you explain it all great 👍🏼 I love your educational videos !
Thank you !!!! You’re so sweet !!
It’s a comfort to know how much you can relate ! Happy I was able to explain these symptoms and do them justice because they SUCK ! Big time ! Thanks for watching and reaching out !! 💕
I am so happy that I found you. I too have collagenous colitis and the medication. My G.I. doctor has me taking is god-awful it is called Entocort and the side effects are worse than the condition it’s treating. I am thrilled that I have found another person on this earth that shares this god-awful illness and I look forward to hearing how you manage yours. I think for me the worst part is whatever I eat comes right out of me in liquid form and I’m not getting the nutrition from my food. The supplements I take daily would think I’m dying but it’s mainly vitamins.
Thank you so much for making these videos. 🙏🏼
Thank you Praline! Stumbled upon you today. I'm currently in a flare and found your videos! I was diagnosed 5 years ago. You tell people what you have and no one's ever heard of it. Keep posting!
its taken me forever to reply and i'm so sorry ! How are you doing these days? I know what you mean, no one has a clue what this illness is and its hard to explain because its so complex ! i promise i will start posting again soon! Thank you for reaching out to me.
xoxox
What’s a flare like ? Do you ever stop getting diarrhoea?
Thank you so much for your info! I so need this
How r you now???
Thank you for this. I was diagnosed with cc in 2017. And now understanding and experiencing the full brunt.
PS. Had a major nausea occurrence this morning...weird and tough. Thx for letting me know this is part of it.
Love the video as I was also recently diagnosed. Very helpful, way more info than my doctor who did the biopsy could offer.... Love him but seems like a bit of a mystery to him too.
Thank you for watching and reaching out, Sorry it took me ages to respond 🤦🏻♀️
Can really relate to not getting any help or info from the Dr after diagnosis. I felt completely lost in the beginning , still feel that way some days. Please let me know if you have any questions or if there’s anyway I can help even if it’s just being a support system💖
Thanks so much the info on this diease is still so limited. Your videos help so much
Appreciate you ♥️♥️♥️♥️
thank you! I had no idea what I had
Thank you! Just diagnosed this week. And there’s hardly anything on the internet!
So sorry for my delayed reply ! I remember when i was first diagnosed i felt the same way, nothing online and whatever i did find was repetitive and inaccurate. Thank you for taking the time to watch and reach out !
don't stop doing this!
Want to thank you for this video. Just got the diagnosis today. Is this associated with celiac disease? You are a wonderful person, for wanting to share and help others. Inspiration
Budesonide worked for a while, then it stopped (both the regular version and delayed release). Two drugs for bile acids did nothing. Mine seems transient but the one thing I found that will cause flare ups (diarrhea) for weeks is if I consume carbonated diet beverages for more than a few days in a row. I can take 12 Immodium a day, and it does nothing to stop the diarrhea. I used to do 8 week cycles of 8 tablets a day of Pepto Bismol, which usually worked. Lately I've noticed much more gas. When I'm not having a flare, nothing seems to bother my stomach. Most of the information I've seen has suggested people have different symptoms, different triggers, and different treatments (i.e. eliminating certain foods while adding others). And, yes, LOTS of water but don't guzzle it.
Praline...your description of your symptoms today...are exactly what I experience.... after being diagnosed with this colitis condition.....😔
As I said before....i have to work 6 days a week ..12 hours everyday...so it's hard to keep up on my special diet and supplements..
My ibd Dr prescribed me Imuran medication immune suppresent..so far after 6 weeks its helping me...dr says.. after 3 months I will see major results...i hope..enjoying your videos..God bless..
Hi again !
I know symptoms vary from case to case but it is a comfort to know you've experienced such similarities as me with this illness.
I know how hard you work and you are truly an inspiration for managing all that you do.
idk how much this will help but maybe just trying to set a routine will make it less overwhelming to keep on a strict diet/supplement routine.
I plan all my meals ahead of time and eat the same thing everyday (i sometimes fast when flaring). I also have a pill organizer that i just toss in my bag so i don't forget!
I know you're busy but health is wealth and you deserve some relief !
Thanks for the on going support & please keep me updated with the immune suppressants and if you are seeing some long term results/improvements.
Take care !
budesonide has been great for me. as far as i can tell, no side effects. started at 9 mg and am down to alternating 6 mg then 3mg every other day. also use pepto tablets sometimes.
this is my second course in a year of this drug but when they taper and then end it symptoms return
I was just diagnosed with collagenous colitis today. My doctor is putting me on 9mg of Budesonide.
@@bassman108 get ready to feel so much better!!! Happy for u😊
Just got diagnosed with this a couple days ago. I’m glad to finally know what’s wrong with me. But definitely overwhelmed at the same time. 😔
I can’t really relate to that feeling, it’s relief to know what exactly the problem is but overwhelming because there is so little info out there on what to do to get relief. I apologize for my late response but wanted to thank you for reaching out to me. Please let me know if you have any questions or if I can help at all 💕💕
I was diagnosed in 2018, but had symptoms since 2016 when I was still in high school after a really traumatic and stressful experience I went through too!
Recently, I have struggled to feel capable of performing certain jobs, and find the limitations very confining and difficult to accept. I want to try other jobs outside of the office lifestyle, but feel that its the best bet for me - low stress and close bathrooms. What kind of job do you have and how do you manage stress and your symptoms in the workplace? I would love to see a video on that if you have some advice.
This is from Jeannie I have had this for 5 years. Oh my gosh, I also have fibro. When this kicks in as it is now I will drink water and have baked potatoes even though I know that will hurt terribly. I am on Lemodal (generic) daily 2 tabs. but when this starts up I go to Budesonide 3 in am. When it does not get better I go on a 1 capsule of 9 Budesonide daily and it helps a lot. But this is crazy!
I was diagnosed in Aug of 2008. I have come out of remission again this is about the faith go around. I do think stress is the key have been under so much stress this year. I didn't notice in your video the underlying diarrhea and how it is 24 seven and that brings on so much more stress. This has got to be the most embarrassing disease I can't leave the house I can't go to work I damn sure don't like tell anyone what is happening to me. I have been out of remission a month now meds don't work . I have fasted the last 3 days just to try something different. I have noticed this time I am running fever don't remember doing this before. Lord knows I need help. I did start my sulfursilezine 500 mg 4 times a day as it has helped me before but sometimes it is slow to improve.
LOL! You're so funny!! Loved this....I'm deaf, so I couldn't hear much, but well presented! Oh, I've had this since around 11! I don't think I've had a solid poop in my life..and when they gave me something to help, believe me, solid poop actually hurt my back horribly! LOL! I'm laughing, but it's not really funny~Ha! At 20, they discovered the lining of my stomach was being attacked, and 2 months ago, Sept 2022, at 60, they finally decide to do a biopsy!! Good gravy!! I know it was not PPI's or any of those things, as I was not popping pills or coffee~LOL~ at 10-12 years old. It seems to be genetic as my birth family has RA/Lupus etc..... We are Viking in origin, btw. Lots of love and hugs!!!! Betsy
🙏
Taking electrolytes is super important because of the chronic diarrhea. Critical!!!
Finally got diagnosed last winter with MC and after a four month round of Budesinide I’m still not any better. Flair ups galore and so tired of spending my days in the bathroom. Just found this blog and hoping to get some info to get a better handle on this disease.
Thank you for reaching out and sharing some of your experience with this illness. Would really like to help you in anyway I can get some kind of relief , please feel free to email me with any questions pralinenoel@gmail.com
❤️
Hi i love your name "praline" is a delicate chocolate bonbon in Belgium ☺️ beside that i got my diagnosis more than a year ago but i don't take any meds anymore
Just diagnosed. It was a shock. I didn't know anything about! I have high levels of IGM too. Non stop diarrhea, bloating, headache and dizziness+ everything else you mentioned in the video.
Don't know what's happening next?
I have ulcerof colitis it gets better every few weeks and then gets really bad for about a week it's kinda getting better got it after gallbladder removed I can gain and lose 20 pounds every 2 weeks I live in Kentucky it's really hard to get anything that helps it's hard to even find a doctor get a lot of nurse practitioner here had this over a year I have to fast for a few days before I call eat again
Thanks - I’m grateful - you’re the expert. D is awful. Nausea sneaks up. Time. Thanks. Doing all the things at once does not equal a year
Thank you for your videos! I'm finding them really helpful. I was diagnosed almost a year ago, but suffered undiagnosed for about a year and a half before that. I think mine was also brought on by trauma. There's been so much going on in the last year, that I have not really dug into learning more about the disease until now, and I'm starting to see a lot of links. In fact I may have been suffering from the constipation form of this disease for a long time before this because that USED to be my problem. Do you mind if I add you as a friend on facebook so I can message you privately?
I hope you come back to you tube
Just got diagnosed yesterday. They think it's because of my lupus because my stomach is also severely inflamed along with a bad hiatal hernia
I just came across your channel. I am 55. Was diagnosed with CC, AND celiac in 2004. I got the Celiac under control, and thats also a daily struggle in this day and age. Then In 2016 also Gastro found Diverticulosis, GERD and Acute Gastritis. I swear anything I eat, just goes through me. Everything triggers something else. I also have Chronic D, which is a symptom of CC. I hate my life. I just am at the end of my rope. Can you give me any ideas on what to do? My body betrays me everyday no matter what i eat or drink.
I’m right there with you. My GI dr and my rheumatologist have tried everything and they’re stumped
What are your safe foods?
Your videos are so helpful! What do you think about juicing?Thank you!
Glad I could be any help at all !
I personally wouldn’t recommend juicing because with this condition our gastrointestinal tracts are so sensitive to anything that is raw, especially when it comes to veggies or fruits 🍉 ❤️
Thank you. I was just diagnosed today. I dont know how I can survive without coffee and chocolate 😩 - any advice? I am going to go into caffeine withdrawal tomorrow.
Hi , so sorry for my late reply! How are you feeling ? and were you able to remove coffee and chocolate from your diet?
I know that everyone is different but i am able to have coffee so long as i am not in a full blown flare and i use a dairy free creamer. Hope this helps !
xoxo
I have an ileostomy
Ditto to everything you said. I have Lymphocytic Colitis and you never refer to that, is there any difference from Collagenous Colitis? Could you touch on that sometime? Same symptoms I think! I hate the Budesonide but am weaning off, a side effect is insomnia! I'm so exhausted and having to work everyday too.
I can definitely do a vid about the different microscopic colitis types ! That’s a great idea 💡 thank you 💕 they are super similar so it’s no surprise you can relate to the symptoms I mentioned.
I’m sorry to hear about your rough experience with budesonide but happy to hear your weaning off, how much longer until you’re completely off ?
Insomnia is literally the worst I’ve suffered from it my whole life and it’s just gotten worse with this illness so I totally feel you girl!!! here for you please keep in touch !! 💕❤️
Xoxox - sleepless in LA
I have this I am having proctocolectomy surgery soon
Thank you for reaching out to me , I wish you well with your surgery 💪🏼 please keep me updated on how it goes !
@@StomachSister oh pawsome I will let you know I am starting a vlog soon too after next appointment
Do you have a web address to the lab you mentioned? I too have no idea where to start as far as my diet.
Thanks!
Great video btw👍
www.enterolab.com/Default.aspx
There is a tab on the far left “which test to order” and there will be a microscopic colitis option 🙂 hope this helps !
Thank you for reaching out 👍🏼
Thank you Praline!
What is the date of your newest video?
Did you take Budesonide? Did it help? I have recently been diagnosed but have not filled the prescription as I'm trying to control with diet. Mine was brought in by a long bout of c diff and lots of antibiotics. I am 63 so don't have too long in my life to deal with this. I feel bad for younger people.
I am so sorry to hear that your illness was brought on by cdiff/antibiotics.
63 is still young !! I hope you are able to see improvement with the diet changes and i am here if you need to vent or have any ?'s.
My GI & i both decided we wanted to treat this illness as naturally as possible to achieve better long term results.
I only take a low dose of mesalamine once a day and to be honest i don't know if it helps.
The ONLY thing that has given me any kind of relief or quality of life back was changing my diet and allowing my intestines to heal + the probiotics and supplements i take.
You are not alone
Please keep in touch !
@@StomachSister
Thank you for your reply. I will continue to try to heal with diet
and my homemade Kiefer and yogurt. I look forward to following your healing journey. Best wishes!
When I have a flare up it always starts with red, sore eyes! Does anyone else have this?
I have two questions…. 1. Are you being treated with meds?. 2. What do you do when you travel?
👋
1. Yes, Mesalamine but at this point I am weaning off.
2. I do not travel because of this condition and it’s limitations
I am still trying to figure out what foods flare me
Honestly, me too. It's so hard to tell the difference between what i'm sensitive to vs what i am intolerant to & like i said, all bets are off if there is already inflammation present because than i just cant eat anything!
How many of us also have oesophagistis and abnormal amounts of burping, or been on PPI's?
I was on ppi I pray to god I heal
@@meddo1679 Its been a year since I posted on youtube. A diet change has helped with 90% of my problems, its wasn't easy but being on a keto diet and reducing carbs and sugars has really helped (that and fewer meals a day). I am sure my acid reflux symptoms have improved immensely. Good luck on your journey, you will get better
@@Downloader77 yo download I didn’t been diagnose with micro coltis but idk what I have I had gastritis for 3 months and was taking ppi for 3 months which I’ve seen my colon hurting also been on antibiotic for 14 days I don’t think the antibiotic is the problem I see the ppi being the problem I think I might have this forever I don’t know where to start
@@meddo1679 You're most likely right about the PPI, its role is to reduce acid, which in turn can cause the wrong type of bacteria to thrive in various parts of the gut, which is why the antibiotics have helped. If you're on PPIs, best advice is to eat smaller meals with less sugar to help reduce bacteria flare ups, you may find it also reduces gastritis especially if you avoid eating late at night. There are many gut issues so please don't take my advice as definitive, but experimenting with your diet is one of the safest ways to help your self. Your condition might be something simple like an onset of a food allergy or intolerance to dairy/wheat which can happen to us as we age or an infection like helicobacter pylori. Taking a good history and food log diary will help you narrow down the culprit.
@@Downloader77 ❤️ thanks man I’ll keep u updated
0h the D is sooooo bad for me. I’ve had to wear giant super max diapers for over 5 years now. NOTHING really helps though I am on Loperamide and Budesonide.
How long have you had it and how are you doing now?
Sooo... you are better now?
PENSABA QUE ERA EL UNICO SER HUMANO CON ESTA ENFERMEDAD. EN SUR AMERICA NO SE ENCUENTRA INFORMACION SOBRE LA COLITIS COLAGENA , AGRADEZO A VER ENCONTRAR TU CANAL . SALUDOS DESDE CHILE
¿ES NORMAL BAJAR MUCHO DE PESO? ESTOY ASUSTADO?
NO HABLO INGLES , SOLO PUEDO LEER LOS COMENTARIOS Y LOS TRADUZCO A ESPAÑOL , ME ENCANTARIA ALGUN DIA SABER DE LO QUE ESTAS HABLANDO EN TUS VIDEOS.
SOY HOMBRE DE 30 AÑOS :(
Its not confirmed that it is an autoimmune yetv
My doctor continue he's to tell me this is not autoimmune.
It is definitely part of the auto immune family ! ❤️💕