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Crohn's Disease Forum » Your Story » Crohn's Diagnosis 17 years after J-pouch surgery for UC


04-07-2014, 09:12 AM   #1
BethG83
 
Join Date: Apr 2014
Location: Senoia, Georgia
Crohn's Diagnosis 17 years after J-pouch surgery for UC

Hi Everyone. First I'll share some background, followed by a request for advice. I was diagnosed with UC in 1995 after I became pregnant with my first child. Two years later, after many unsuccessful therapies and getting sicker and weaker, I made the decision to have my colon removed and have j-pouch surgery. Mine was a very successful surgery and I had minimal problems, so I considered myself a success story. Here I am 17 years later (age 48), feeling just fine, and in January 2014 I suffered a major hemorrhage from my j-pouch, was hospitalized for several days, and received five units of blood. My BP was very unstable as well, dropping to 40/60 at its lowest. I had both an endoscope and flex sig procedure, as well as a CT scan. I had inflammation present in the stomach, and my j-pouch was full of ulcerations, one of which was responsible for the bleed.

At this point they suspected Crohn's, then I also had the Prometheus blood test. (I now consider this test to have been a giant waste of money because it was not covered by my insurance due to being "out of network." This is ridiculous given it is the only lab in the country, according to what I understand, that does the test. I now owe over $700 to this company. My doctor never even considered checking to see if it was covered, nor did I. Big mistake.) The test came back with only one positive marker for Crohn's, which was called "indeterminate." I was put on a 40 mg. dose of prednisone, tapering down each week, and began using the mesalamine enemas (both of which I used when I had UC.) I had a follow-up scope again in February and was told I had "Indeterminate Crohn's." Aggressive therapy was recommended (Remicade infusions.) I opted to get a second opinion from another gastro doc on the north side of ATL and while the ulcers did look better in Feb. when he scoped, he said that I still had ulcerations at the anastamosis site. He concurred with the Indeterminate Crohn's diagnosis, saying it might be, and it might not be, but that he would go ahead with the Remicade to try and keep my j-pouch healthy. Tomorrow I begin my first infusion. Has anyone else received an Indeterminate Crohn's diagnosis this many years after a UC diagnosis, or j-pouch surgery? I just find it odd that I had absolutely NO other symptoms or red flags until the bleed in January. It makes it hard to think about being on long term infusion treatment, other than the health of my j-pouch. Of course, the possible risks are concerning. Just hoping someone else out there can share any insights/experiences.
Thanks so much!
Beth
04-08-2014, 09:19 AM   #2
Tuff
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Join Date: Feb 2013
Location: Ontario

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Hi Beth, and welcome to the forum. I'm sorry you've had such a hard time. I'm afraid I can't answer your questions, since I don't have similar problems. I just wanted to give you a warm welcome. There is a lot of information here, I hope you find some answers.
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04-11-2014, 03:17 AM   #3
valleysangel92
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Hello Beth

I'm sorry to see that you've had such a hard time and that you haven't had more answers.

I can totally understand your worries about going onto such an aggressive treatment, especially if you don't feel that sick, but as you've found out, crohns is a sneaky little begger, and it creeps up on us. Hopefully remicade will keep it at bay, and limit any more surprises.

Unfortunately, I can't be a whole lot of help to you as I don't have experience with J pouches. I just wanted you to know someone is supporting you, and hopefully by replying i'll bump your thread up to the eyes of those that can help you.

In the mean time, if theres anything else you need help with, please don't hesitate to ask!
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04-11-2014, 06:35 AM   #4
Johnnysmom
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Welcome Beth,

Very sorry to hear you have had a difficult time lately. I only know a bit about j pouch failure from a crohn's diagnosis and all my information comes from reading posts from others in a similar situation here on the forum. I can only say that the change in diagnosis does still happen even with those diagnosed now, I know DR's are hesitant to do the J pouch surgery for that very reason. We were told that once they found granulomas on my son's biopsy that they could confirm his crohn's diagnosis. It sounds like your biopsy was still somewhat inconclusive, which I have read from others in your situation posting too.

I can only tell you that with crohn's disease commencing a therapy quickly gives you a better chance of getting the disease under control. From what I have read, remicade won't help you much if what is going on is not Crohn's. You can always stop remicade if you aren't seeing results, and then look to other possible causes. If the remicade helps improve your condition, I would say that is one more check mark showing that it is crohn's you are dealing with. There have been recent studies that show the disease course can actually be changed if biologics are started early in disease course. I am not sure this would apply to you since you had colon issues for so many years. Good questions for your GI maybe?

I am sure some others with more information will be along shortly to give you some advice. I apologize for not being very knowledgeable about this issue, but I did want to welcome you and give you some support.
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04-13-2014, 06:14 PM   #5
mrsriff
 
Join Date: Apr 2014
Location: Redford, Michigan
Hi Beth...
Your story is IDENTICAL to mine. Diagnosed with UC 22 years ago. Major flare and hospitalization and colon removal/j-pouch a year later. I have been in great condition for over 20 years except for occasional mild pouchitis. This past November I started a major flare of what I though was pouchitis that I just could not shake. When I went off antibiotics, the flare came right back. Met with a GI in Feb and he suspected crohns. Colonscopy in March confirmed it, though by that time I was feeling fine, even off meds. GI thinks I could have had crohns all along and was misdiagnosed with UC, or crohns just developed now, he says we will never know for sure. I was put on entocort, which I will be tapering off of soon, and lialda (which is quite expensive even with insurance). This has all been very overwhelming but I currently feel really good and am tolerating the meds. BUT, I honestly think I feel good because I started taking probiotic VSL#3 in February and started on the SCD diet as soon as the colonoscopy confirmed crohns. I am hoping to work with my GI to get off meds entirely if I continue to feel this good.
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