scared of the j-pouch surgery

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

TrustyShellback
New Member


Date Joined Jan 2010
Total Posts : 12
   Posted 5/8/2011 6:01 PM (GMT -6)   
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

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/8/2011 10:49 PM (GMT -6)   
Your situation is very reminiscient of my husband's. For most of his time while suffering Healing Well was a great resource for us in the UC forum. Fast forward to last June when he made up his mind to have the surgery.

He dealt with Mayo Clinic in Jacksonville Florida that we are extremely satisfied with. At the outset the plan was for a j-pouch and it could not be done in his case. We were aware of all the whys and wherefores that it could happen that a permanent ileostomy could be necessary in the end. We were a bit disappointed not having the chance at giving the j-pouch process a try but it wasn't meant to be. That was on 12/17th.

Aside from the initial disappointment, his surgery was a success, a very complicated 7 1/2 hr surgery that he survived with no complications, he is no longer in pain, no longer on all those immune suppressants, he has and is adjusting very well to this new lifestyle change with me by his side and honestly we now have a life back.

Honestly once he made the decision to have the surgery it was like a weight was lifted too. I think I was more scared and worried than he was. After the surgery was over it's funny the pain you are in is now from the surgery which is kept under good control with the medications but you are no longer in the UC pain. Of course recovering from the surgery there is discomfort but you notice improvement each day.

Others can answer more specifically for the multiple surgeries. In my husband's case it would have been 2 and not 3 surgeries if it was possible. He was off prednisone for 3 years which I think plays into the decision for a 2 or 3 step process. Prednisone from the sound of things makes things softer and harder to work with internally to create the pouch I have read so that is why a 3 step process is needed then.

We did a ton of research and we had been mentored and prepared by a guy who had a j=pouch for almost 25 years and were very prepared. We were planning on and thinking the ileostomy would only be a 3-4 month situation but it is permanent and that's ok.

The main thing is you have to be ready for this. Nobody can make you decide. My husband mentioned in the hospital when his GI doctor visited who had mentioned surgery several times to my husband while treating him that he should have done it a year or two sooner. The Dr said to my husband...."you were not ready then" this had to be when you decided and were ready. My husband was sick and tired of being sick and tired. The frequency and urgency ruled his life and made it impossible sometimes to go somewhere and do some of the simplest things and it was easier to just stay home.

Fortunately he didn't wait too much longer and possibly end up with a cancer situation which was the fear of his local GI doctor since he was on all the heavy duty immune suppressants, failed remicaide and heavy duty pain meds under the supervision of a pain management specialist.

Do a lot of research and get familiar and comfortable with what is ahead of you. My guess is you might want to get a good estimate of the down time needed for the various recuperations so you can plan accordingly. Need to list all the pros and cons and decide what will work the best for you. Some opt for just the one surgery and have the permanent ileostomy.

You will read success stories and also stories from some people who don't have perfect results which can make you nervous. With a good surgeon the odds are in your favor for a good outcome as the odds are high on the success rate. My husband would have liked to have a go at it but like I said was'nt meant to be for him. To get my old husband back with his cheery disposition and personality and not seeing him suffering day in and day out is wonderful and he is so grateful too.

Good luck.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/8/2011 11:21 PM (GMT -6)   
its normal to be scared, its a huge life changing decision, life changing in a good way though!
i don't have a jpouch i chose a permanent ileo, and i didn't have it at mayo so i can't help with those questions.
i can tell you that getting rid of my colon was the best thing i ever did.
think of all the things you can't do now, all the things UC is keeping you from, and remember it won't anymore!
good luck!

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 5/11/2011 10:47 AM (GMT -6)   
     My surgeon told me I was not a candidate for j-pouch due to my age at time of surgery (63), other health issues and I was prednisone dependent for almost 2 years.  I told him I had no problem with the idea of wearing a bag.  Had my surgery last June and feel soooo much better.  If you are frightened to have the j-pouch surgery, I suggest you inquire into the surgery I had, total colectomy with end ileostomy.  I think summerstorm had the same thing.  It only took 1 1/2 or 2 hours and done...no more surgery.

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 5/11/2011 1:51 PM (GMT -6)   
I had surgery 1 in January and take down 5 weeks ago. I had it at the Cleveland Clinic. I am so happy with my decision. I feel almost completely normal. The surgeries were rough, but now I have no urgency, go around 6-8 times a day which will get better. It is not a big deal at all. I go when I pee. I sleep through the night and since I started using Beano before my big meals I have been able to eat anything I want without any problems. I know I am very lucky and not everyone has such great results, but you have chosen a wonderful hospital so I am sure it will be fine. 90-95% of people are happy they had this surgery.

I was terrified about surgery, but it all turned out even better than I expected .

Good luck and let us know how you do.
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step April 4, 2011. So done with this disease.

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 422
   Posted 5/11/2011 4:33 PM (GMT -6)   
trusty shellback:
 
If you go through with your first surgery, and tell the MAYO folks you'd like a j-pouch, they will leave enough of your rectum in so you can do step 2 and step 3 later....
 
If you find you are comfortable with a bag, then you can dismiss the later surgeries, though you might have to have minor surgery (relatively speaking) if there are any issues with your remaining rectum that they would have to remove it.....
 
So, you will still have a choice..and, if you go through with entire j-pouch surgery and have no problems, great..if you do have problems, you can alwasy to back to an illeostomy.....
 
You should look at j-pouch.org and some other postings on this site for the success stories and the challenging stories....
 
enigma
 
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, September 24, 2018 7:56 PM (GMT -6)
There are a total of 3,006,262 posts in 329,320 threads.
View Active Threads


Who's Online
This forum has 161825 registered members. Please welcome our newest member, TheRayf.
300 Guest(s), 8 Registered Member(s) are currently online.  Details
dbrookenz, Kokopuff7, PeterDisAbelard., cashlessclay, BillyBob@388, Cashed Out, 61Impala, Fairwind