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Ulcerative Colitis
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Posted 9/19/2010 8:17 PM (GMT -5)
I need to vent. I was diagnosed with UC in college about 5 years ago. I saw multiple doctors and we tried everything under the sun, nothing seemed to work to help with the constant bleeding, bloating, you know the symptoms! I was miserable, finally my doctor in a last ditch effort decided to put me on prednisone. The side effects of that were almost as bad, I couldn't sleep, gained a ton of weight and felt terrible. On the plus side my UC went into remission. I vowed never to use prednisone again though.

After graduating I move and found another absolutely fabulous doctor. Anyways, long story short he put me on Colazide and it has worked wonders. I am having a flare up right now (I am sure this has to do with missing appointments and not taking my medicine regularly). Anyways, I started dating this guy about 6 months ago. Recently I told him about my UC because I was having a flare up and it was really affecting me. He mentioned that his childhood (and still good friend) also had ulcerative colitis but that he "cured" it and I should talk to him because it shouldn't be as big of a deal as I making it out to be...let's just say that little comment didn't help things. Well, the three of us went out for dinner the other night and my bf in the middle of the conversation told his friend I have UC. At that point they wanted to discuss it, made me feel terribly uncomfortable and basically said that I am obviously not doing something right because the friend was able to get over it and I cannot.

If I am not mistaken ulcerative colitis is a cronic disease that we have to live with. Yes, there are things we can do that can help the symptoms, we can go into remission and feel great, but it doesn't really ever go away. There is no cure. His friend continued to go into this long song and dance about a diet he did for it and that cured him. I tried to explain that it really isn't that simple. Am I completely wrong here?

Posted 9/19/2010 8:40 PM (GMT -5)
No you are not wrong. They are wrong. My Grandmother told me that she also had UC in her thirties and that she cured it with mylanta. I just nod and smile. My MIL sent me an email that a friend of hers with 'digestive problems' (very vague. Maybe she was constipated or had to fart. ugh.). Her friend cured herself with eating yogurt every day. Swell.

Listen to your doctor. I'm happy for for your friend that they are in remission. That's awesome because this disease sucks and I don't wish it on anyone. But don't let them tell you that if you stop eating this or that you will be magically cured. When I was at my worst, I just layed on a towel and pooped all night laying down because it hurt too much to sit up. I was hospitalized the next day. I don't think yogurt, or mylanta is what I need.
Posted 9/19/2010 8:45 PM (GMT -5)
Is this friend of your bf on the diet still?

Is it the SCD diet?

Ask him to write you a written plan of exactly how he did it and then post it here. Should be good for a chuckle!
Posted 9/19/2010 8:58 PM (GMT -5)
That was my exact thought too. It is the SCD diet. He wants to sit down with me in a private setting and discuss it. Do they honestly think I haven't tried to help myself through diet? I also tried to explain to them that I can eat one thing one day and be fine, eat the exact same thing the next day and have killer stomach pain. :)
Posted 9/19/2010 11:42 PM (GMT -5)
You poor thing! What an awful experience. You would think that someone who has suffered from UC would be much more sympathetic and understanding. You are not wrong - it is a chronic condition and from what I have seen there is not yet a magic bullet that helps all people.
Posted 9/20/2010 8:20 AM (GMT -5)
It is so very frustrating when others tell us of "cures" - !! I think we've all been in that situation.
My favorite one (I've mentioned it a few times) was the woman who told me she'd had UC it had cured it be eating a diet of only angel food cake!

For a lot of us, diet doesn't seem to make a lot of difference, but for others, it makes a huge difference. Imagardener2's story, for one, is really wonderful - she has been brought into a solid remission through the SCD, and she'd been in such bad shape for such a long time! So..... we're all different, and the only thing one can do is to try various things, be they meds or foods.

To be honest, hearing that some folks respond so well to diets while others don't makes me wonder if soon they will discover that UC, as we experience it, is really the manifestation of several different diseases.....(but I'm a musician, not a scientist, luckily for the world in general - lol!)

That said - it is just not helpful when people make light of UC or tell us we're doing something "wrong" to not be able to overcome it. When I was first diagnosed with u. proctitis, I remember saying to the doctor, "So, how do I get curd from this?" He smiled sympathetically and answered,
"If I could tell you that, I'd win the Nobel Prize for Medicine!" I've quoted that line a few times in response to thoughtless remarks from people.

And - welcome to the forum!
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