I just had my annual pouchoscopy done on Wednesday, May 21, 2008, in New York City. As in past years, my doctor saw ulcerated areas on the top and bottom of the pouch. However, my symptomology is not too bad; I have complete control, 5-7 BMs per day and this is largely due to chronic antibiotic therapy (cipro & flagyl rotating to Xafaxin). I have had the J Pouch since 1992 and have been scoped every year.

My doctor decided to probe the ileum above the pouch and he saw some ulcerated areas in my ileum about 20-30 cm above the pouch. He told me this is not pouchitis and recommended a blood test for Crohn's. A blood test was done after my pouchoscopy, the specimen sent to Prometheus Laboratories and the results are due back next week.

Some questions:

1. Does anyone know what this test will cost me or whether there will be an issue getting insurance coverage? I have group health insurance through ConnectiCare.

2. If it is determined that I have Crohn's, will my treatment change at all? I mean things are okay with the antibiotics, will they be better than okay with something else?

By the ways when they took my colon out in 1992 my surgeon told me it was basically dissolving. My quality of life is substantially improved as a result of that colectomy. I always had bleeding in my bowel movements pre-colectomy and NEVER since. Pain was much worse as well.

Can't answer your first question. You may want to put in a call to your insurance provider regarding plan benefits/exclusions. I think that generally if the doctor deems it medically necessary, they will approve it, but many plans often require prior approval.

Your treatment should not change with the different diagnosis, except perhaps being offered a wider variety of treatments, other than just antibiotics. Even though clinically you are fine with the current treatment, obviously there is chronic inflammation that needs to be addressed.

Jan

Hey Jan,

Thanks for your response. I did some research and I saw some comments suggesting that the blood test for Crohn's is about $650. My insurance carrier does not require prior approval and my gastroenterologist told me it was medically necessary.

I seem to recall at one time I was put on Imuran to treat my pouchitis. I recall developing bad liver chemistries that came back on my blood tests and I was pulled off of it after probably less than a month. I am not sure if they tried any of the other treatments for Crohn's. I was treated for 20 years for UC with azulfidine and prednisone before the deterioration ultimately led to a colectomy in 1992.

It is possible your doc may suggest Remicade or Humira, particularly since you did not tolerate Imuran. Methotrexate is another option too.

Jan

I am writing to share the very positive experience I recently had dealing with Prometheus Laboratories, the company that analyzes blood samples for Crohn's Disease. I had to contact Prometheus because my gastroenterologist's office called and told me they forgot to ask me for a copy of my insurance card so they could send it to Prometheus with my blood specimen. I asked them for Prometheus's phone number and told them I would contact Prometheus and deal with them directly on the matter.

Today I spoke to a lady in Prometheus's billing department who was extremely helpful and informative. She gave me a fax number to send my insurance card to. After I faxed both sides of my insurance card to her, from my office in Connecticut, she called and confirmed that Prometheus had received it and that they would bill my insurance carrier directly. She told me that she was familiar with my insurance carrier and she said that sometimes they claim (depending on the test that is being done) that the Prometheus test is an "out of network" service. I told her that would be an absurd position to take because to my knowledge there are no laboratories in Connecticut that do any of these kinds of tests and, therefore, there is no equivalent "in network" provider available.

She went on to inform me that if my insurance carrier took this position, Prometheus would appeal. I told her that I am an attorney and would lend any assistance I could to any appeal, and my gastroenterologist has already told me he would write whatever letters had to be written in the event of an appeal. The Prometheus rep promised to keep me apprised throughout the process.

I also advised her of the existence of this Board and this thread specifically, and told her there were some unanswered questions about the cost of the Prometheus tests. She advised me that the cost of each test varies but they range from $445 for the IBD Serology 7 (which I think is the one I had) up to $799 for their most expensive test.

Overall I was very impressed with her assistance to me on this matter. Very professional, prompt and seemed very well informed of all the issues in the process.

I should have my results back in a few days from what I am told. I am pretty much bracing for a Crohn's diagnosis after 36 years of thinking I had UC pre-pouchoscopy. But from my perspective it does not change anything except it maybe adds some different treatment regimens. I have had the pouch for 16 years and IBD for 36 years, and my symptomology is considerably better than most of what I have read on this Board. Hopefully I will be able to continue for many more years with the pouch.

I have looked at this website for years, and only lately have been posting. My case is a really weird one, and although I am not an expert, I am a perfect example that sometimes there is not a clear cut answer. For 4 years all of my pathology came back as UC. Each flare continued to get worse, I was steroid dependent, and 6MP was causing toxicity in my bone marrow. My gastro referred me to Dr. Sack for colectomy and jpouch. Between my consultation with him and my surgery date, I developed sores all over my body. After a week in the hospital, the docs came up with a diagnosis of "sweets syndrome" which can be associated with IBD (the sores did not fit the other IBD skin manifestations). I was also diagnosed with episcleritis, had about 25 mouth sores, and of course the other typical UC symptoms. I also had the Promethesis labs done, it all pointed to UC. No signs of Crohns in small bowel follow through, etc. So, I had the surgery. A few months later, I develop an RV fistula. Dr. Sack did two repairs. Finally, it worked and I was able to have my take down (had an ileostomy for 6 months). BTW, after the colon was out, the sores and eyes and mouth healed. A couple months after take down, I start getting horrible joint pain in my hands and ankles, and another episcleritis flare. Things are starting to look very suspicious. Dr. Sack refers me to Cedars to Dr. Stephan Targan (great specialist for Crohns and Colitis). They start a series of test including Promethis labs - which still point to UC. However, they found ulcerations in the ilium about the pouch with a capsule study. Their recommendation was Remicade (the RV fistula had also returned after take down). They said that I don't really fit either category completely and am one of those rare cases. Sorry for the book, there were so many other odd things as well. However, I have been on Remicade for 3 years now and have been in complete remission and the fistula has closed. Thank God!

Well, I got the results of my blood test for Crohn's Disease back from Prometheus Laboratories. Before I discuss the results, let me quickly summarize my IBD background by timeline:

1972- Diagnosed with UC as a 9 year old boy
1992- Colectomy & J Pouch
1995- Chronic pouchitis begins; is controlled but not eliminated through rotating antibiotic therapy
2007 - ulcerated areas discovered in ileum just above pouch
2008 - ulcerated areas discovered 20-30 cm above pouch.

My blood test came back negative for Crohn's and negative for Ulcerative Colitis. According to my gastroenterologist, the pathologist who examined my blood specimen said that the granulomas that are markers of Crohn's were not found in my blood specimen. However, my gastroenterologist said this does not necessarily prove that I don't have Crohn's. He said my specimen is going to be examined by another pathologist experienced in diagnosing difficult Crohn's/Colitis cases.

While I am not really sick, my gastroenterologist is concerned because the biopsies he took from the ileum show inflammation and severe ileitis and those biopsies should be normal except for what is in the pouch.

So the bottom line is, we are sitting tight pending further review of the results by another pathologist.