Question for people originally diagnosed with UC

Well I started out with Crohns in 1981, which was diagnosed by default, the biopsy never really proved it... Then I moved in 1984 and finally switched to a closer doctor in 1992 who changed me to UC. By then most of my disease was in my colon. And to be fair, the surgery in 1981 of small bowel just showed "something funny" but indeterminate.

Then I had an abdominal abscess which turned into a fistula in 2009/2010. During that initial hospitalization (abscess drainage) I had enough of my 2nd doctor so I switched to a 3rd doctor (who is actually in the same practice) - not a whole lot of choices here in the boonies! That was a little awkward but I didn't care. I thought I needed fresh eyes. So the 3rd doctor reread my entire chart (I probably have an entire filing cabinet to myself!) and stated I have Crohhs. Which was proved by this year's surgery to remove the fistula. (at the same time she removed some diseased small bowel, unknotted my bowel, and removed a stricture - and oh yeah, broke up some adhesions).

But it really doesn't matter. The meds are the same, although some target different areas by how/when they dissolve. I used alot of proctofoam (enema inserts) during the first decade (along with the dreaded prednisone) and asacol for maintenance (started out on sulfasalazine until the asacol came out). Tried the Humira to heal up the fistula, but went off it before surgery and haven't gone back on it...

The numerous fistulas I have had (3), the hemorrhaging episodes (4), all point to Crohns without even looking at the biopsies. The proctitis, however, led the 2nd doctor to UC. So it's all very confusing isn't it?

Hope that helps some...

Sudsmom

I was diagnosed with UC back in 1992. Most of my inflamation was rectal and lower colon then. But despite everything my Gastro tried, I stayed ill. As he said "You shouldn't be this sick" It always puzzled him. My second Gastro figured Crohn's as he asked me about every illness I had in the past, including weird un-dx'd stuff. Also, I started having arthritis that did not act like UC related arthritis.
I have since been dx'd with UC/w IBS, And others. But Crohn's is the only proper fit. The problem is, to this very day, no one has seen ALL of my GI tract.

Sincerely,
Matthew
PS. But I'm not betting against CD, my luck just tends to go that way.

Hate to say it but there's really nothing "typical" when it comes to whether remicade will work or not for a UCer, since some UCers have gone into remission using remi and Humira.

Have you thought about getting a second, third or even forth opinion? I would, especially if the talk of surgery from your GI is happening.

Good luck, hope you find the answer sooner than later.

Allwell

Sorry, I wasn't able to respond before now - I believe that the hardness in your vein is from Phlebitis - I've had Phlebitis twice now since I've had UC - the first time was in my leg and it was the first thing that happened after I was diagnosed with UC - according to my doctor, the hardness and pain can actually linger for up to 6 months - the 2nd time was this past Feb when the hospital blew the vein in my arm where the IV was while they were doing a blood transfusion and I developed Phlebitis there - it created a very hard area that hurt - there really is nothing that you can do about it - your body will heal itself on that one -

I was diagnosed in Jan '08 with left-sided UC but not all my symptoms were common for UC but my GI at the time said they weren't related to the UC and I was treated for them separately

However, the symptoms are fairly common for Crohn's - I go thru bouts of vomiting for days on end and then it will stop for months before it starts back - very uncommon in UC but common in Crohn's

I have a gastric ulcer at the base of my stomach where it dumps into your small intestine - I had an upper GI done for that and am still on Prilosec to reduce stomach acid - my GI at the time said that it had nothing to do with the UC but my regular GP has always wondered if it was related - I believe it is

I've had Pancreatis, Kidney Stones, Phlebitis twice, Pulmonary Embolisms and Infarction, DVT in my leg, developed a bloodclotting disorder, anal abcess and tears that had to be surgically repaired - I have perianal tags that I always thought were hemroids - my rectal surgeon is the one who told me what they were and that it was very common for Crohn's but again not for UC - he is the one who said that he did not believe that I had UC but that I had Crohn's - my new GI, who I absolutely love, agreed with him but because I do not have anything in my small intestines, as of yet, my official diagnosis is Chronic Universal UC - if I ever develop anything outside of my large intestine, then the diagnosis will officially change to Crohn's - that is why she considers it a hybrid of the 2 - I have a huge number of symptoms that are more Crohn's based but my intestines show what they consider to be UC - inflammation is unbroken and encompasses my entire large intestine

Those were my symptoms and after my new GI told me what she did, it all made sense - the problems that I had that just didn't seem to fit with UC did with Crohn's but it took a 2nd GI and a rectal surgeon to figure it out

Good luck with whatever choice you make - I totally understand what it's like to have young children who keep looking at you like you've got one leg in the grave and the other on a banana peel

none of my symptoms changed, the only physical changes though was that when I was dx with UC my whole colon was inflamed and then when I had a repeat colonoscopy later that year it showed patches of ulcers and the biopsies were positive for CD. I was on Lialda and prednisone at the time, then I switched to Pentasa and imuran.