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Posted 12/27/2007 1:51 AM (GMT 0)
Hey everyone,
I am trying to decide whether or not to have a J-pouch procedure to treat my UC that I've had for over 4 years. I've been on steroids for almost a year (currently 15 mg) and don't want to be on them for the rest of my life. They're not even fully effective anymore, I think they keep me from being really ill but I still have bleeding and resulting lack of energy. I tried Remicade for a year or so and it was never really effective. So...next step is surgery, which I think my doc is pushing me toward. She did a capsule endoscopy and said there was 'no convincing evidence' that I had Crohn's, which is the other thing I'm worried about with the surgery. I thought she mentioned there was a tiny part of my small intestine which may have been a little irritated, but I'm not sure if I should be worried about that - she also said there's no reason why I shouldn't have a J-pouch procedure. Anyone out there who is in a similar position or has had the surgery done? I'd appreciate people's thoughts.
-Pat
Posted 12/27/2007 4:01 AM (GMT 0)
Pat

Most of us on here still have our colons.... you might want to ask the people who have all ready had the surgery. www.jpouch.org

I am hoping to go for surgery sometime in the spring/summer.

--Keith
Posted 12/27/2007 4:10 AM (GMT 0)
hi Pat - I am not in your situation, so you can /take leave my thoughts as you wish, but my understanding from my GI is that pred does stop being effective eventually, and so it sounds like you may be headed down that road, potentially. my GI, who I really respect, feels strongly that surgery is a serious option when pred is the only drug able to keep a patient well, as pred is a dangerous drug in the long run. he also says that he thinks patients seem to be better equipped emotionally to think about surgery when they feel like it is a choice, as opposed to a corner they have been backed into because all drugs have failed them. I know it is a hard decision. good luck. oh, and someone on here named "suebear" has a j-pouch, and she has been very pleased with it. I find her thoughts very reasonable, so you might see if you can find her (post something with her name in subject line), and definitely check the j pouch site.
Posted 12/29/2007 8:35 PM (GMT 0)
Pat,

I am sorry I missed this post, I am traveling in South America and only check the internet sporadically.
I had jpouch surgery 8 years ago due to refractive disease. I was prednisone dependent my last 2 years with UC. I could not get below 10 mgs without flaring. At that time Remicade was not on the market and my last drug for UC was 6mp. I gave it 1.5 year try but it didn't help. I opted for surgery because I became afraid of the long term side effects of pred use more than I feared surgery. I also have to admit it took meeting a j-poucher face to face to see that there could be a good qaulity of life post surgery. Surgery isn't easy, recovery is about a year but at least I felt good in recovery and knew that I was going to be okay.

Today I am med free. I haven't had to see my GI in 8 years. I hike, backpack, and do long distance (200 mile) hikes. I am grateful that I have been given a second chance to have a normal life. One of the best reasons to have surgery is to get a quality of life. If you feel you have reached that point then you might consider a consultation with a CR surgeon. Find one with lots of j-pouch experience. Talk with his/her paitents and by all means visit www.j-pouch.org Don't be alarmed by the people who post with problems. Just like this site, many who post there are having difficulties and looking for support. There are over 6000 of us registered on that site and the vast majority are out successfully living life.

Sue
Posted 12/31/2007 4:51 AM (GMT 0)
i don't have a j-pouch i have a perm ileo, but i can tell you it is SOOO great! Not being sick is so nice, no more steriods, no more hair falling out, no more horrible cramps. A plus i learded today, and this may not be true for j-pouchers, but when you have a tummy bug, it's not bad at all, a minute to empty the bag, and no cramps like usually with D. And no hemmroids, lol.
Anyway, Suebear is the best about J-pouchs, and also check the ostomy board on here.
Posted 12/31/2007 10:54 AM (GMT 0)

tennisfan4 said...
Hey everyone,
I am trying to decide whether or not to have a J-pouch procedure to treat my UC that I've had for over 4 years.

As David Klein said:

“I spent my 18th birthday in a hospital, taking prednisone and azulfadine drug treatments. The symptoms subsided, temporarily, but the drugs further ruined my health and had a devastating effect on my mental abilities.

Within a few months, feeling sickly and very weak, I experienced a recurrence of the diarrhea and additional symptoms, including cramping, bleeding, and this lead to further physical deterioration.

What ensued were eight tortuous years of colitis flare-ups and off-and-on drug therapy.

At age 26, I was reduced to a weak, sickly shadow of my former self. I was having gastric explosions every time I ate, up to 10 painful bowel movements a day with mucus and blood. My nervous system became shattered as I was toxic, debilitated by the medicines, and severely demineralized.

In the fall of 1984, I had a colonoscopy exam which confirmed that I had advanced ulcerations throughout my sick colon. Surmising that I had been chronically sick and was not getting better, the gastroenterologist recommended that I either try his experimental drug which knocks out the immune system, or have my colon surgically removed.

Upon hearing this, a heavy decisive thought entered my mind: I have had it with this medical nightmare - I'll be dead soon if I don't find the answer myself! My life was a gradual descent into hell and now I had to climb out now because I sensed it was almost too late.

http://www.colitis-crohns.com

-------------------------

My alternative suggestion only, please do what is best for you.

Best wishes for whatever you decide.

 

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