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Ulcerative Colitis
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Posted 5/8/2011 9:36 PM (GMT 0)
Hello everyone. I have had ulcerative colitis for 5 years now. I've been on every drug they have to offer and my condition is to the point where I can no longer control it without being on 50+ mgs of prednizone. 2 weeks ago my wife and I went to the Mayo clinic in Rochester Minnesota where they told me I needed a J pouch which will consist of 3 surgeries. I am wondering from all you fine people if any of you have ever had this done at the Mayo Clinic in Rochester and if so what was your experience like. From the surgeries to the post care. If you've had this done but not at the Mayo Clinic I'm curious to hear your stories too. The reason you ask? Simply put, I'm scared to death. Any input you have would be greatly appreciated.

TrustyShellback
Posted 5/8/2011 9:58 PM (GMT 0)
I recommend you visit the ostomy board:

https://www.healingwell.com/community/default.aspx?f=33

there are a few people here who have pouches but not nearly as many as you will find on the ostomy board or on j-pouch.org

A j-pouch can be a really wonderful option for people who have chronic colitis that is resistent to medication. Most people say their only regret was not doing it sooner. Of course, as with any surgery, there are risks. Make sure your surgeon is well trained and has done a lot of procedures. Go to j-pouch.org and ask for recommendations.

Hopefully you get a response from suebear, she has a pouch and couldn't be happier.

Posted 5/9/2011 10:58 AM (GMT 0)
I have heard the Mayo clinic is wonderful for the j-pouch, but yes, you need to really research your surgeon. I truly believe that it can make all the difference between a successful and unsuccessful outcome.

I went to the Cleveland Clinic, also wonderful for this surgery. I wasn't prednisone dependent so I had it done in two surgeries. I am five weeks out from take down and am very happy. Nocomplications except two partial blockages which resolved on their own. I go between 6-8 times a day. I sleep through the night. I am hoping I will go around 4 times a day after the pouch matures. Don't let that scare you. I go when I pee, so it's not to big of a deal. I have normal cramping, but this will go away...only lasts for about 20 seconds.

The surgeries are tough, I'm not going to lie. However, I am so happy I did it. The drugs were making me so sick. I gained a ton of weight, felt awful and looked awful. Now I have lost all the weight and look and feel great! No meds except imodium once a day.

Go to the ostomy board...they are so helpful. J-pouch.org is good, but I couldn't go there before the surgery because a lot of people who go there are having problems. I couldn't read all that. Luckily, I am progressing better than most and it is now helpful to learn tips.

I was so scared...thought I wouldn't make it through surgery...I am so happy now. Getting on with my life. Good luck to you!
Posted 5/9/2011 6:18 PM (GMT 0)
(1) Visit the Ostomy Section on this site def as mentioned above
(2) Visit jpouch.org

I was in your boat. I didn't last 5 years with UC. I was only able to last for 1 year. Went through all the meds and nothing helped. My life was rendered virtually useless. This week is my 1 year anniversary with the jpouch. It was the best decision I made. I am not 100% w/o problems, but I am 100% better! I have heard great things with the Mayo and Cleveland clinics. I had my surgeries done at Mt. Sinai in NYC. I had a two-step procedure. People that are usually very very ill and on long term and high doses of prednisone will usually go for 3. I had the ostomy for 4 months and it is not bad at all. Once you get that you are going to notice a huge increase in your quality of life by being able to get out without sewing a toilet to your ass. Most people I think are more freaked out about the ostomy. It didn't bother me at all, just another thing to get used to which you will. I wish you the best of luck.
Posted 5/10/2011 1:06 AM (GMT 0)
Well I had my colon removed April 2010 because of severe ulcerative colitis I had for over twenty years.  I spent at least 4 to 6 weeks in hospital with all sorts of complications. Dr. also synged my bladder during surgery. He also cut my small intestine too short and had to reattach and reattach until small intestine was long enough to reach pouch ( which he put in the crease of my stomach-pouch leaked constantly, and I developed little blisters which had to be burned off.} Twelve weeks later he went back in and made a J-pouch and reattached. I was in the hospital another 6 weeks or so. Complications. I was constantly vomitting and would be just standing and have a rush of diarhhea , even at night while I slept-I would awaken and have had a bowel movement. Back to the hospital I went again for another stay- got an infection, legs swelled 3 times their normal size and had my stomach pumped. I was released a few weeks later only to return again to hospital. This time Dr. said my small intestine was twisted and I had a third surgery in Aug. 2010. Stayed in hospital a few weeks and sent home w/ infection. Returned again to hospital because I was still vomitting and my stomach was making loud noises and moving like I a baby was kicking inside. Has my stomach pumped again aand also had to drink that barium solution. During all these visits I also has multiple CT scans.  Dr. put a small plasstic tube up my rectum into my pouch and drained off 2 liters of bile that was backing up into my small intestine. That's why I had been so sick. I had to continue this even after being released. It is now May 2011 and I have very bad diarhhea with as many as 20 or more stools a day. The only way I can work or make it through the day is with Lomotil.  It doesn't stop the stools- just slows them down enough to function. My stomach makes loud noises and somtimes sounds like water gushing.  I have developed hemmoroids now and sometimes they bleed. I wonder if it will always be like this. I went back to the surgeon and he told me " I don't have any words of wisdom for you" Nice of him -wasn't it. I still think something happened during my initial  surgery. I'm seeing a GI doctor now and have had multiple CT scans, ultra sound, and a colonoscopy into my pouch. Couldn't find anything out of the ordinary.
Posted 5/10/2011 1:21 AM (GMT 0)
This is why it is so incredibly important to get a surgeon who had done hundreds if not thousands of these surgeries successfully. This is a very complicated surgery and you can't just trust anyone to touch your colon. I wouldn't let anyone in my state touch my colon. I traveled 5.5 hours to the CC, but it was so worth it. At the CC, they say their j-pouch satisfaction rate is 95%. No UC medication can touch that!
Posted 5/10/2011 1:24 AM (GMT 0)
I agree, surgeon experience is EVERYTHING. I drove 2 hours to have my surgery done by the best in my state. It's critical to get a highly experienced surgeon. This surgery is extremely complicated.

Sue
Posted 5/10/2011 1:50 AM (GMT 0)
Before going through the HUGE hassle of the surgery, I would highly recommend looking into the fecal transplant. My wife had uc so bad that she was on the verge of going through the surgery but had a stroke (blood clot in the brain) because her blood/body was so messed up from uc. Our doc told us about fecal transplant and, after much research on this forum, we did 10 days in a row of transplants and she gradually tapered off the prednisone, remicade, etc. without having a single uc symptom return. It was absolutely amazing and I've got the pics from the before and after colonoscopies to prove it. Do searches on fecal bacteriotherapy, human probiotic infusion, and fecal or stool transplant.

It is absolutely freaking amazing.
Posted 5/10/2011 2:30 AM (GMT 0)
  Well I did have a competent surgeon who pioneered the laprotropic surgery for the ileostomy. This surgeon has an extensive background and experience in doing this procedure. He presents and teaches all over the country. But it's important to know that no matter how experienced any surgeon is, mistakes do happen.  

 

Posted 5/10/2011 11:48 AM (GMT 0)
Hi. I was very sick with UC back when I was 15 (I'm 38 now). Meds weren't helping, nor were hospital stays on IV to give my bowels a rest so I had the 3 surgeries to remove my colon and create a jpouch. I didn't have it at the Mayo clinic but hav heard amazing things about that hospital (had it at sick kids in toronto, which is also an amzing hospital). I can tell you that I have never regrettted the decision (mind you, at that time they just told me I was having it). I am not in pain after I eat and can live pretty normally. Only nuisance is having to use the washroom regularly.

As for the surgeries, in all honesty they are rough (although last one is easy in comparison). Worst part for me is the NG tube.. The recovery is slow as it's abdominal. Never the less, it is all worth it to live without pain.   For me, I had the first surgery and then lived with the ileostomy for a year.  Then in the summer I had the next two (beginning and end).  Only reason I waited though was so I wouldn't miss school. 

Good luck in what you decide.

PS - salesgirl, what an awful experience for you.  Am so sorry.  Can I ask where you had it? 

Post Edited (Lu2011) : 5/10/2011 5:52:46 AM (GMT-6)

Posted 5/10/2011 12:05 PM (GMT 0)
Boone Hospital in Columbia,Mo.
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