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Any UC/Crohns sufferers out there?


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I was diagnosed with Ulcerative Colitis (UC) - a form of Inflammatory Bowel Disease - over 10 years ago. In the majority of that time I have had barely any flare ups. However, in the past 2 years I have had an almost unmanageable flare-up. Steroids seem to bring a flare up under control but these are for short term use only. Once off these and on more suitable long term use medication the flare ups seem to come back. I am now in the midst of a really horrible flare up that is both painful and exhausting.

 

I was hoping that there maybe others out there battling with this chronic disease and whether they have any advice on coping with it.

 

Thanking you in advance.

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I don't have UC, but a long-term ex-boyfriend does. I can certainly understand what you're going through, having been by his side for many years and watching him suffer.

 

His flare-ups were awful, too. He tried a lot of different medications and they had little effect, unfortunately. I can't comment on his condition these days as we're no longer in touch, but when we split about 5 years ago, he was taking an IV-administered steroid, though the name escapes me now. I believe he was receiving treatment once every two weeks or so.

 

Something his doctor regularly questioned him about was his diet and lifestyle. He ate well, generally-speaking, but his job was stressful and competitive (he is a chef and restaurant owner) and he worked long hours. He often functioned on little sleep and worked daily in a high-octane environment. There is no doubt in my mind this amplified his symptoms. That was the one thing he didn't try to change and I would be very curious to know if that would have eased his suffering.

 

How's your own nutrition? Have you noticed if certain ingredients magnify flare-ups?

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My father has both. He said the only thing that really works is controlling your diet, as in staying away from the foods that cause flare ups, and do not work/maintain a stress free environment. Doctors don't always have the greatest of input, so you really have to find what works for you in these areas. Even if it means only eating one thing for your entire life and being a couch potato.

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Agree. People vastly underestimate the role of diet and continue to eat spicy foods, fad diets,etc. and whatever they want without adhering to the best dietary program and lifestyle management.

My father has both. He said the only thing that really works is controlling your diet, as in staying away from the foods that cause flare ups, and do not work/maintain a stress free environment.
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Hey Blue. I was diagnosed with UC 4ish years ago.

 

UC and Crohns, while both falling under the same IBS umbrella, are quite different. UC is located in the colon and bowels- much further down the digestive tract than Crohns (for the people advocating diet change- diet change is mostly effective for treating Crohns, not UC).

 

Do you have a gastroenterologist? Someone that specialIzes specifically in the IBS field?

 

Mine has told me repeatedly that most diet changes for treating UC are ineffective, with the exception of the FODMAPS diet- but he recommended that I only try it if my UC isn't controlled with meds, and only under the supervision of a registered dietician that specializes in it. I'm not sure where you're located, but the hospital my specialist is in has an entire unit that specializes in UC- they have dieticians and even doctors that specialize in pregnancy with UC...it's an amazing resource. I can send you a PM with their info if you're interested (but I'm in western Canada so it may not be practical for you).

 

Medication, seeing a specialist regularly for treatment (colonoscopies and med adjustments), a healthy lifestyle (following the food guide, exercising, getting enough sleep) and avoiding stress are the best ways to improve your condition.

 

Do you take daily meds? I take mezavant daily...and when I'm feeling off...like I might be starting to flare up, I use sofolak suppositories. My doctor was interested in trying me on remicade- but I've went into remission, so he'll probably wait until my meds aren't controlling my UC before we go that route.

 

I'm sorry that you've experienced multiple flare ups in the last few years...I've had two, and I wanted to die both times. It's awful...it's painful and scary...and you're right, it is exhausting. During my flare ups, I slept. I couldn't function- work was out of the question.

 

Steroids are almost as bad as the flare ups though. I really feel for you. I am such a mess when I've had to go on them...I gained 30 pounds over the 8 weeks I was in them- I was an angry, emotional mess...I'm sorry that you've had to use them multiple times. Brutal.

 

I feel for you I hope you're feeling better soon.

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Thank you everyone for your well wishes and kind words. It means a lot.

 

To answer the questions on diet, generally speaking, I have always eating quite well. Like faraday says, there doesn't seem to be a link with UC and diet. That said, when having a flare up, certain foods are more likely to aggravate the inflammation. Oddly enough, in such circumstances, foods that are good for you are ones to avoid .. fruit, raw veg, high fibre foods. I am currently switching over to gluten free products and lactose free milk and sticking to a very bland diet of fish with potatoes or white rice to see if that helps to ease symptoms. However, as far as triggers are concerned that's another matter as, unlike Crohns, it's not thought to be connected to specific foods or diet.

 

Hey Blue. I was diagnosed with UC 4ish years ago.

 

Do you have a gastroenterologist?

 

Sorry to hear that have UC too faraday.

 

Yes I have a gastroenterologist with whom I can speak as and when I need to. There is also a unit at my hospital that specialises in Crohns and UC but thank you for the offer of the link. Like yours mine has told me that changing my diet is likely to have no effect.

 

I am currently taking mercaptopurine every other day but I am given such a small number of tablets each time (as I have to have regular blood tests to monitor the safe use of these meds) that I have run out a few times and missed a few doses which can have (and seems to have had) a detrimental effect on keeping the flare ups in remission.

 

It seems that only steroids can get the flare ups under control at the moment but, like you say, they can be as bad as the condition itself. I swore last time that I would never go back on the steroids again but now that I am suffering again (and this time in more pain than before) I have all but begged the specialist to put me back on them ASAP. My daughter's don't like it when I'm on the steroids. They said I cried and got annoyed a lot! Weaning off them was a nightmare too.

 

There was once a time when taking asacol would quickly get a flare up under control but those days seem long gone.

 

 

Anyway, once again, thank you all!

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  • 2 weeks later...
Thank you everyone for your well wishes and kind words. It means a lot.

 

To answer the questions on diet, generally speaking, I have always eating quite well. Like faraday says, there doesn't seem to be a link with UC and diet. That said, when having a flare up, certain foods are more likely to aggravate the inflammation. Oddly enough, in such circumstances, foods that are good for you are ones to avoid .. fruit, raw veg, high fibre foods. I am currently switching over to gluten free products and lactose free milk and sticking to a very bland diet of fish with potatoes or white rice to see if that helps to ease symptoms. However, as far as triggers are concerned that's another matter as, unlike Crohns, it's not thought to be connected to specific foods or diet.

 

 

 

Sorry to hear that have UC too faraday.

 

Yes I have a gastroenterologist with whom I can speak as and when I need to. There is also a unit at my hospital that specialises in Crohns and UC but thank you for the offer of the link. Like yours mine has told me that changing my diet is likely to have no effect.

 

I am currently taking mercaptopurine every other day but I am given such a small number of tablets each time (as I have to have regular blood tests to monitor the safe use of these meds) that I have run out a few times and missed a few doses which can have (and seems to have had) a detrimental effect on keeping the flare ups in remission.

 

It seems that only steroids can get the flare ups under control at the moment but, like you say, they can be as bad as the condition itself. I swore last time that I would never go back on the steroids again but now that I am suffering again (and this time in more pain than before) I have all but begged the specialist to put me back on them ASAP. My daughter's don't like it when I'm on the steroids. They said I cried and got annoyed a lot! Weaning off them was a nightmare too.

 

There was once a time when taking asacol would quickly get a flare up under control but those days seem long gone.

 

 

Anyway, once again, thank you all!

 

Out of curiosity (sorry if you already mentioned it and I missed it) but have you had surgery for UC? My husband has (or technically had) UC and now has the j-pouch. It is has tremendously helped him. He still often feels a little off, but the pain is gone and he can eat whatever he wants.

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Hi marie. No I haven't had any surgery. Just medication so far. I am back on steroids at the moment. After that I will take care to manage my medication better and see where that takes me. I have read up on the surgical procedures and how it improves the quality of life.

 

How long was your husband suffering before they offered him surgery?

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Hi marie. No I haven't had any surgery. Just medication so far. I am back on steroids at the moment. After that I will take care to manage my medication better and see where that takes me. I have read up on the surgical procedures and how it improves the quality of life.

 

How long was your husband suffering before they offered him surgery?

 

He was diagnosed at 16, and had the surgery at 21. The surgery itself was extremely hard. It was a two part procedure where they removed most of his large intestine. He had to have a colostomy bag for three months, and once he healed internally they did the second part of the procedure. I wasn't with him during this but he said it was the worst 3 months of his life with the bag, however he's glad he did it because he no longer suffers with the pain. He's also off ALL medicine, which is something he's pretty proud of because he relied so much on it for so long. He eats whatever he wants, but has to take a lot of vitamins since he no longer has his large intestine. Once in a awhile, he has inflammation where they will prescribe him an antibiotic for. Other than that, his life is pretty normal. Might be something to think and discuss with your doctor if it gets to a point where it's unbearable.

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You might be interested in the book "Anti-Inflammatory Diet in 21: 100 Recipes, 5 Ingredients, and 3 Weeks to Fight Inflammation". The author, Sondi Bruner, has Crohn's. I have a different auto-immune condition of chronic inflammation, and I know it and Crohn's are sometimes treated with the same meds and alternative treatments. I gave up wheat years ago and that made a significant difference. Now, I've been following the diet outlined in this book for 4 weeks and it has definitely reduced inflammation and improved my energy level and mood, and I plan to continue on it. It took a week for me to get used to the diet change and giving up some of my standard foods. The recipes are simple (5 ingredients) and there is variety and novelty, which help the process. I think over time I may stick with this diet because of the overall improvement. It took time to feel the improvement though.

 

Here is a link to the book on Amazon:

 

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He was diagnosed at 16, and had the surgery at 21. The surgery itself was extremely hard. It was a two part procedure where they removed most of his large intestine. He had to have a colostomy bag for three months, and once he healed internally they did the second part of the procedure. I wasn't with him during this but he said it was the worst 3 months of his life with the bag, however he's glad he did it because he no longer suffers with the pain. He's also off ALL medicine, which is something he's pretty proud of because he relied so much on it for so long. He eats whatever he wants, but has to take a lot of vitamins since he no longer has his large intestine. Once in a awhile, he has inflammation where they will prescribe him an antibiotic for. Other than that, his life is pretty normal. Might be something to think and discuss with your doctor if it gets to a point where it's unbearable.

 

I am really happy that the surgery worked out for your husband. It's certainly encouraging to hear too. I have largely been in remission since first being diagnosed so coping with it on this scale is new to me. I'm hoping that I will be able to get it under control again to that extent but if not then it is something I will discuss with my doctor. I'm assuming that surgery is the last resort however.

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Thank you so much journeynow. I'm in the UK and it's not available until June so I've pre-ordered a copy. I definitely think I need to take more notice of the foods I'm eating whilst I'm flaring. If it helps then I am prepared to change my diet permanently - flare up or no flare up.

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I got about 3 minutes into that video before my eyes started rolling lol. That guy is sketchy.

 

Please don't listen to chiropractors (and especially not from YouTube lol) for any medical advice other than having your back looked at (and even then the science doesn't really have enough confirmed evidence to support chiros for back alignment either)...they aren't real doctors. They don't study for years specializing in these fields...They're peddling pseudoscience. I mean, at the end of the video that guy was taking about how a patients Crohn's disease was caused by hip misalignment...wt.h?!? Lol.

 

Skip the "gurus", stick with licensed MDs. Seriously. People like that will make you sicker.

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Hi, thanks faraday. I'm just hoping to find as much information on helping to get the inflammation under control and how to stay in remission once the inflammation (or flare up) is under control. With UC this information is all still rather vague. I'm willing to listen to anything that offers information on dealing with UC but I think this can be done quickly, effectively and straight to the point so I won't buy into any sales pitches.

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Can you request the surgery, or do you need to wait until it is offered to you? chi

 

Hi Chi. I think, in general, it is offered to you when all else has failed. I am assuming, however, that if someone was finding their condition/symptoms difficult to cope with at any level you could approach your specialist about the possibilities of surgery.

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I was diagnosed with Ulcerative Colitis (UC) - a form of Inflammatory Bowel Disease - over 10 years ago. In the majority of that time I have had barely any flare ups. However, in the past 2 years I have had an almost unmanageable flare-up. Steroids seem to bring a flare up under control but these are for short term use only. Once off these and on more suitable long term use medication the flare ups seem to come back. I am now in the midst of a really horrible flare up that is both painful and exhausting.

 

I was hoping that there maybe others out there battling with this chronic disease and whether they have any advice on coping with it.

 

Thanking you in advance.

 

I have UC, I had it since I was in 4th grade, I am 27 and havent had any problems since I was 18.... SMOKE CANNABIS OR EAT IT!!!!! It WILL go away. TRUST ME. Miracles that grow in the ground.

 

*edit*

Oh and also I have went months without smoking and have had no issues. Trust me just smoke or eat Cannabis aka pot aka weed aka marijuana. It really works, I stopped for a long time to test it and it came back, started smoking and eating it again and it went away!

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There have been studies done on how smoking (cigarettes) can minimize flare ups with UC. My doctor joked that it's the only time smoking is beneficial...but it will kill you in other ways. My mom is dying from lung cancer right now...she smoked in her 20's.

 

Has your flare up passed yet?

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I have UC, I had it since I was in 4th grade, I am 27 and havent had any problems since I was 18.... SMOKE CANNABIS OR EAT IT!!!!! It WILL go away. TRUST ME. Miracles that grow in the ground.

 

*edit*

Oh and also I have went months without smoking and have had no issues. Trust me just smoke or eat Cannabis aka pot aka weed aka marijuana. It really works, I stopped for a long time to test it and it came back, started smoking and eating it again and it went away!

 

Thank you for your advice BAIG. However, I've never smoked weed in my life (well I think I had one drag once) so it is unlikely that I will start now. But you know what "they" say .... never say never! Like, faraday says though, what might benefit us in one way can hinder us in others.

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