I am new to the forum and contemplating two-stage surgery soon (ileoanal anastomy with pull-down).

My questions are two-fold:

1. Has anyone else experienced UC initially misdiagnosed as Crohns? And is this really a blessing in disguise because now removing the colon may mean an end nearly constant diarrea?

2. Does anyone else also have intersticial cystitis (another auto-immune disease, but affecting the bladder) and does this tend to present even more complicatations for J-pouch surgery itself and many other things such as diet, problems taking the surgery preps, etc.

Background

I had been told for the past several years I had Crohns, but I went for a second opinion about five weeks ago to decide whether to switch from Imuran to Remicade. My second opinion doctor advised me to try uping the Imuran before switching medications and, if that did not work, having yet another colonoscopy to see if we were still dealing with chronic inflammation because switching to another imuno-suppressent would do no good were that not the case. My first doctor grumbled, because he did not think it necessary, but I had the colonoscopy (my third in five years) and suddenly I'm am told there is low-grade displasia throughout and my entire colon has to be removed stat, that I don't have Crohns after all and that it was UC all along, and they just missed the signs in all my previous colonoscopies (4 in 7 years). All the tests performed since that time have been inconclusive as to whether I have Crohns or UC.

I have intersticial cystitis, which is little blisters inside my bladder. In early stages before diagnosis (eight years ago), I had to pee every 5-10 minutes (and no, I am not inflating this). I currently have the IC under control but am a walking chemical factory and have more restrictions on my diet (but different ones) than seem to be recommended for patients with UC, Crohns, ostomies and J-pouches combined.

Salmon

Hi!
I was first diagnosed with UC 20 years ago, then they changed it to Cronh's, and this year after a Prometheus blood test and several colonoscopies it was clear I have UC! I also have interstitial cystitis, mine is affected by me being dehydrated, so as long as I stay well hydrated I am OK, otherwise it hurts like an urinal infection, ouch! I need to drink constantly since I have so much diarreah to stay away from the pain. I have had other surgeries without problem, though I was nervous with having a catheter, but no problems. I also have other immune related problems, mainly lupus. Not fun at all!

Thanks SweFlo.

My gastroenterologist said up until now it really wasn't an issue whether I had Crohns or UC because the treatment was the same. The two surgeons I talked to about the J-pouch surgery also don't seem to care too much about the diagnosis either, which confuses me. Perhaps we may have a better picture once the colon is removed and the lab slices and dices it.

I understand that the interstitial cystitis is a much rarer disease than either Crohns or UC. My IC has always taken the form of frequency and urgency in peeing, but no pain thus far except when I first had exploratory surgery to look at the blisters inside my bladder and scrape them off. I am also concerned about the catheter and being overhydrated for the surgery, as my interstitial cystitis is a very fine balancing act. Underhydrate me and the urine becomes concentrated and blisters my bladder. Overhydrate me and I'm living in the bathroom for 3-5 days. I once set a record of 72 bathroom stops on a 100 mile drive through the mountains.