Well I was planning on having a j-pouch surgery sometime in June. I have had UC for 5 years with all biopsies confirming UC. I just got results from the promethius blood lab and the results all points to Crohns ??? I am so frustrated. Now I'm not sure whether I have UC or Crohns....and the surgery is definitly on hold and probably will never take place. Modern Medicine has failed me. What are my options and what should I do ???

what test did you have that showed that you have chrons?? I am at the same place you are with the surgeries and I am scared of finding out that I have chrons too. I have never had any upper GI test done (which I think is odd) and I was thinking about asking my GI to order something to rule out chrons before I have the surgery.

Sometimes it is very difficult to tell whether you have UC or crohn's colitis. I was one of those people, too. The good news is that pathology says it's UC, and that's important. What exactly did the promethius labs say? Have you had any kind of upper GI testing done to rule out any disease elsewhere in the GI track? Have you had a full bloodwork done to look for any other problems that may be "masking" the UC?

My persoanl experience is very similar. I had been diagnosed originally with UC, then 10 years later change to possible crohn's. During one of my last colonoscopies, it was discovered that I had cancer and that my colon needed to be taken out regardless of whether it was UC or CD. Since a Jpouch is not recommended for CD, I was very concerned about this and eventually was diagnosed with Indeterminate Colitis and a J pouch is considered for Indeterminate Colitis. Shortly after being told I had Indeterminate Colitis, it was discovered that I had a seperate medical condition which had been givng me some of the symptoms of CD and once that was discovered I was given a clear cut - you definately have UC diagnosis. With my particular secondary condition (a liver condition), rectal sparing of disease and backwash ileitis is common - and those are both contradictions to standard UC and more suggestive of CD. It may have also caused the results of my Promethius lab to be ineffective.

I want to encourage you to keep asking for clarity from your Dr.s and go to get a 2nd opinion on the pathology reports and get more info from the Promethius lab. If you are not satisfied with those results and your GI's efforts, then go get a 2nd opinion from another GI. I ended up going to Mayo Clinic for my 3rd opinion and subsequently had my J pouch surgeries there.

Rick

Agree with Kaboom. Get a second opinion. My situation was somewhat similar, indeterminate Crohn's/Colitis. Promethius results showing some markers for Crohn's. Also have two relatives with Crohn's. My GI Dr. took my results to one of those GI conferences and conferred with the best in the biz, they said surgery was still better option than prednisone dependence. He still took precautions pre- surgery and did a small bowel barium contrast xray and pill camera test to look for small bowel inflammation. If we had found any, the surgery would not have taken place. My GI was the one recommending the second opinion, he wanted someone else to back him up if we decided to go ahead with the surgery.

The Prometheus tests for Crohn's and UC are not conclusive nor entirely accurate. Please do not rely on this test alone to try to get a diagnosis. There have been members on this board who's results said Crohn's but they had UC and vice versa.

Sue

My daughter had a very fast and furious case of UC. It was first diagnosed as crohns. I changed Dr.s and it was stated that she had indeterminate UC and the prometheus test was not that conclusive. She was too sick at the time to create the jpouch so she just had her colon removed and had an 'end' ileostomy until she was off steriods and feeling better. The pathology stated it was UC. So she kept the bag for a year, felt great, and the 'end' is much easier to handle. And during that time if there is no activity in the small bowel they were very confident to create the jpouch. She had that surgery done in one step, creating the jpouch and connecting it all at once avoiding the 'loop' ileostomy. It is not always promised it can be done that way, it all depends on how things look when the surgeon gets inside. So this is to let you know that you have options if you are realy sick and need to get the colon out. It gives you time to heal and the results of the biopy of the colon will give a definate answer. My daughter is doing great, 7 years later. She just turned 25.

Just last week I had that upper GI exam where you drink that barium and the doc takes x-rays of your stomach esophagus. After I also had a small bowel series exam and the only inflammation showed up in my large colon. Everything up to this point has pointed to UC. My doc decided to take 1 last measure with this prometheus blood work and i don't have the documents in front of me but he just told me all of the markers point to Crohns. So at this point i have no idea what to do.

Don't lose hope yet. There are some surgeons who will do the j-pouch if you have Crohn's colitis. The criteria would be that you have never had any small bowel Crohn's and have no perianal disease.

There is a great deal of overlap in these diseases and in a very motivated patient, the j-pouch can be appropriate for Crohn's colitis. However, understand, that with a high index of IBD serologies pointing to Crohn's, your risk of complications, particularly chronic pouchitis, is higher than someone with UC.

Jan

There was some doubt about my diagnosis before I had surgery. One test was positive for Crohn's, and three others showed UC. I decided to have a permanent ileostomy. Since then I've had some extra-intestinal manifestations of Crohn's, and I had another test which showed Crohn's.

But I feel much, much better than I did when I had my colon. The urgency is gone. I can wait until I'm finished with something before I empty my bag. I can eat almost anything I want to eat. I sit through things. I can enjoy things like going on long hikes. My quality of life is much better with my ostomy.

An end ileostomy won't cure Crohn's. But it can induce remission. It also gets rid of urgency, which was a pretty big deal for me.

Because of the doubt related to my condition, I chose an ileostomy. 15 to 20 percent of UC patients actually have Crohn's. And the failure rate for J-Pouches in Crohn's patients is roughly 50%. In hindsight, I'm really glad I made that decision.

I was 'diagnosed' with Crohn's about six months ago, after being hospitalized for anemia. I'm convinced now that I've had Crohn's all along, at least since having my j-pouch in 1990 (after more than 30 years with UC). My GI says that all the blood work indicates Crohn's, but to me, even if the tests aren't conclusive, the bloating, cramping, semi-obstructions, and the resulting frequency and inflamation of my anal canal...all those symptoms are enough to convince me that it's Crohn's. Why take more tests?

My GI has me on cipro (which I've been taking for years and helped for a long long time), but with the anemia, he's been more concerned and now has me on Pentasa, endecort, and iron supplements. At first the endecort and pentasa seemed effective, my blood count even rose from low 9's to low 10's, but now the intestinal symptoms are coming back. Are there other medications I should explore?

Gary

Gary, maybe it's time for methotrexate and/or Remicade or Humira.

Jan

I tend to agree with others, don't loose all hope, nothing is for certain here. I was first mis-doagnosed with Crohn's, and had the dreaded "bag" for almost 2 years before they realized it was indeed UC. I had my final takedown many, many years ago, and touch wood, it was definately NOT Crohns...now, chin up, and let us know what happens, ok???

Cheers!
Eric