Ulcerative Colitis

[elephant]

Dear everyone,

Most likely no-one else has this problem, but if anyone does I'd appreciate your insight.  I've been diagnosed with ulcerative colitis.  I think this is why I've never recovered my pre-donation energy levels (donated in May 2011). 

Looking back, I started having symptoms a year ago, but didn't even consider the possibility that UC was the cause.  After all, I'm in my late 40's, and UC usually manifests in much younger people.  I thought I was in perfect health, eating a vegetarian diet, exercising for at least an hour every day.  Now I'm wondering if the physical stress of the donation triggered my immune system to overreact.  (UC is considered an auto-immune disorder)  The last straw was taking clindomycin for a root canal surgery. 

My labs were still pretty good, but creatine levels seem to be slowly rising.  BTW, my recipient has much lower creatine than I do! 

Here's one problem, many of the foods I'm supposed to eat for UC are the ones that are not kidney friendly and visa versa.  For example, UC responds to fatty fish (sardines) which are high in phosphorus.  White bread is ok for phosphorus but not UC.  I've been eating bananas and peanut butter as its about  all I tolerate and now I read thats a bad idea.  The only foods I see on both lists are boiled zucchini and chicken.

Love, elephant
 

[sherri]

Hi Elephant,

Sorry to hear about your new diagnosis of ulcerative colitis (UC). It's true it does manifest itself in the younger population (teen till about 30) but then again in 50 - 70 years of age. So being in your late 40's not unusual. I would think the best thing is to consult with a nutritionist to help balance the safe kidney diet with the UC diet. Do they recommend steroids for the UC or is that just for severe flare ups? Have you gone back to your transplant center for follow up or at least let them know of your new diagnosis? If your creatinine is rising slowly you may have to get the nephrologist involved also.

Sounds like you are very proactive about your health and willing to take the steps to manage both the disease so I hope this won't effect your kidney health.

Keep us posted.

Sherri

[Orchidlady]

Maybe this is a dumb question - not to question your diagnosis, but are they sure it is UC? I had similar issues when I was around 39/40 years old. It took, what seemed to me, a miserably long time of tests and doctors. Come to find out, my problem wasn't ulcerative colitis but lactose intolerance. No problems since I began dealing with it on that level.

So sorry to hear about this. I sympathize with you as it must be stressful and unnerving. Hope you feel better soon.

[elephant]

Yes, it is UC, the biopsies confirmed it. 

I'm sure it wasn't a lactose issue, since I've been vegan for a couple of years.  Most of the nutritional recommendations for UC cut out milk, cheese, sugar, caffeine, grains (not just wheat), beans, yeast, alcohol, raw vegetables, raw fruits, and chocolate.  Except for the dairy and alcohol, that pretty much threw my entire diet out!   

I finally got through to the transplant center, but I don't think the person I spoke to knew much.  Hardly suprising, really, because what are the chances of a person being both a donor and diagnosed with UC later?  She did agree to arrange a consult with my neprologist from the donation if my gastroenterologist wants me to take prednisone.  I was hoping to actually speak with the nephrologist myself, but I guess they don't want to take the time, sigh. 

I talked my gastroenterologist into giving me prescriptions for monthly labs for a while to make sure the medication I'm taking (Lialda) doesn't affect kidney function. Unfortunately that is a possible side effect. 

In the meantime, after doing the best research I could, I decided to use a nicotine patch and take a probiotic plus fish oil.   Interestingly, smokers rarely get UC.  When they stop smoking they start it at the normal rate.  There's only been a few clinical studies, but they did suggest it helps induce remission.  I doubt many physicians would recommend nicotine - probably afraid the patient would take up smoking.  Anyway, I'm now using the patches in reverse.  Instead of starting with a large dose and stepping down, I'm stepping up from the smallest patch.  I plan to give it 4-6 weeks.  I looked at nicotine gum as an alternative, but they all have aspartame or other artificial sweeteners. 

Thanks for your support, it's nice to have pals to discuss with.  To end on a good note, my recipient (Daddy) just got his latest lab report - his creatine level is 0.9. Wow, way to go kidney #1! 

Love, elephant