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Thread: Any UC/Crohns sufferers out there?

  1. #1
    Platinum Member Blue68's Avatar
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    Any UC/Crohns sufferers out there?

    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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    Platinum Member Wiseman2's Avatar
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    Make sure you consult a licensed, registered dietitian in addition to working with your doctors.

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    Forum Supporter ~Seraphim ~'s Avatar
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    I am so sorry Blue.

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    Platinum Member melancholy123's Avatar
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    My cousin and a good friend both had Crohns, so I know how awful it is. Sorry, hope you can find some relief somehow.

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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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    Platinum Member Wiseman2's Avatar
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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.
    Originally Posted by yatsue
    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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    Platinum Member faraday's Avatar
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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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    Platinum Member Blue68's Avatar
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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.

    Originally Posted by faraday
    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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    Originally Posted by Blue68
    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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