Anyone here with the same diagnosis? non specific Colitis/Crohn's

[exit4]

Hello,
I am 47 yo male and one of those unspecific Colitis/Crohns people. Was told since 1990 I have UC, Asakol and Pred with Rowasa enema pretty much managed it all these years. Last year started having more extra intestinal issues - hip pain, abscess, fistula. Have been in terrible mental and body pain since first fistula surgery in July of 09 - failed fistula plug, 3 hosp stay, 2 c-diff's, fistulatomy in Oct 09 - still healing, fissure, skin tag. Most of my pain is in my rectum/anus, some belly pain, no dria. Leaking after BM. Can't sit longer then 15 min, my job is a desk job, so I am on long term disability - thank GOD for my wife support! Remicade was ok for 2 infusions, got reaction on the 3d. Pill cam test was clear, prometius test positive with Crohn's with UC features. Anyone here with the same diagnosis? Went to see a top Crohn's doc at a local teaching hospital - U of Penn. Dr. name is Gary Lichtenstein. More tests coming...I hate this disease!

 

[Crohn's 35]

Hi Exit4 welcome to the forum! Wow you have a lot of issues, and so glad your wife is there to support you, not many here are that lucky.. As most of us know that is so important! I was allergic to Remi on the 3rd infusion ended up in severe arm pains for a week! Never had a pill cam, pr the prometius test. I have Crohns many years and was sought to have Colitis in Feb but was ruled out a gastro bug. Told my Gi I was still having issues, and put it down to IBS. Alot of tests are not so bad, but some are painful if you are in high pain.

What more tests are they going to have you do?

This disease does suck and getting a full diagnosis is even harder for some. Glad joined us. Welcome aboard!

 

[glum chump]

Hi Exit4

I'm not sure if this is the same thing, but I have "indeterminate colitis" which was diagnosed a year ago from a biopsy during my colonoscopy. I was diagnosed with Crohn's about 9 or 10 years ago and so my GI isn't completely able to make the call that I have one or the other, so he says I have both. He said that while the biopsy suggests "indeterminate colitis", the fact that I repeatedly get fistulas and the different/shifting areas that are affected (small bowel, rectum, etc) affirms the Crohn's diagnosis.

I hope you're finding some relief and that the doctor at the U of Penn is able to give you some clarity.

 

[Lisa]

I went close to 20 years or so with Colitis....then Crohn's colitis....now crohns'.....very similar history as you - but no surgeries (I fought those tooth and nail!).....Remicade has worked wonders for me - healed my fistulas.......hoping it stays that way !

 

[exit4]

to Jettalady

Thanks all for response.
I am having tests: sigmoscope, ultrasound of rectum, defecogram, anal manometry - all to see why I am leaking after BM -possible sphincster - spell? damage; and what is causing this level of pain. My new doc thinks I may also have proctitis that is causing additional pain.
I am very angry at my GI and colo rectal surg. for not warning me of issues with ANY operation in rectum - it's a known terrible area to heal...I am the prime example of long healing - 9 months so far! I even contacted an attorney for advice - no go, as I had diag. of UC at a the time and not CD.
My mental state is terrible, I can deal with just pain, but leaking after BM is such a mess! I have to sit in a tub to soak and wash every time I go...
Very depressed... :depressed:

 

[Starlight]

I'm one of those strange ones that have the symptoms of crohns, but (most) test seem to show UC. I was first diagnosed with crohns, and kept that diagnoses for like 4-5 years until I switched doctors. Well the inflammation kind of went to just one area, so he changed it to UC. Even though I still have symptoms from crohns. Well the most recent doctor doesn't believe it's UC because of my symptoms and past history( past scopes showed skipped areas of deceased colon like crohns does) she thinks it's crohns. So I don't even fully know! Confusing!