J Pouch Surgery

Surgery wasn't bad. Sure it's painful but they keep the pain in-check at the hospital. I was back to work 3 weeks after surgery but the norm is 6 weeks. Adaption to the new plumbing and recovery from a 2+ year flare took about a year. But that wasn't a year of doing nothing. I worked, I hiked, I traveled to Europe. Frequency was higher and adjusting to fruits and vegetables took time. Basically you need to be patient while your small intestine learns how to behave like a colon/rectum. Today I am excellent! No meds, no special diets, no canceling life plans for UC. I've been doing nothing but making up for lost time.

Sue

How's the urgency been clicky?

after a severe UC flare-up that lasted more than a year, i had laparoscopic j-pouch surgery step 1 (colon removal, j-pouch construction, and temporary ileostomy) in early december. the procedure lasted around 4 hours and i was in the hospital @ lahey clinic near boston for 5 days. i was pretty sore for the first two weeks after surgery, but actually didn't take any pain meds after i was discharged. i was able to go to christmas parties after two weeks and went back to work after 3 1/2 weeks. getting used to the ileostomy bag & stoma was a challenge, as was the low residue diet and battling potential dehydration by drinking lotsa water & gatorade. i think i was borderline dehydrated as my skin got really dry & flaky in the three weeks before step 2.

i had lost 25 pounds due to the UC flare. however i gained over 15 pounds in the two months between step 1 and step 2 (the takedown) in february. the takedown procedure takes about an hour and i was in the hospital for 4 days. i was pretty sore for the first week after surgery, and experienced a lot of gassiness & cramping for about 10 days after the procedure as my j-pouch was learning to store stool. after two weeks i was able to have a normal diet, have sex, go back to work, and resume living a normal life.

over two months later i have about 8 bowel movements a day, but go when i want to (usually when i pee) and can hold it for over an hour. i don't experience leakage, urgency is a non-issue, i can drink beer and wine, and eat salads, fried foods, buffalo wings, etc. i'm pretty close to my normal weight now. the limited amount of "butt burn" i experience is controlled with wipes & calmoseptine ointment. my "medications" consist of imodium, metamucil wafers, and a daily probiotic. i'm back to planning vacations and completely enjoying my life.

along with the links clicky posted, check out ucvlog.com. a guy named dennis over there has posted some really informative & helpful videos about the j-pouch.

also, keep in mind that you'll probably read a lot of horror stories online about the j-pouch surgery. just like this forum, people having problems go online to vent and find solutions to their issues. you often never hear from the many people who had successful j-pouch procedures and recoveries. while complications can and do happen, it's a fact that over 90% of people who have had this procedure are happy with the outcome. i figure it's my duty to combat these negative posts with my success story.

A game plan has been made between me and my doctors. Good news is that the flare up is more under control then it was. Bad news is that I'm a pretty high dose of the steroids that will take me a while to get winged off of. After that its surgery for me. I'm hoping to have the first part with in 2 months. It has been tough over the last ten years dealing with UC and the timing in my life right now couldn't be any better to have it done. I would like to go through this experience with all of you because you guys are all awesome and have been there for me since I have joined this site. Any questions and comments are welcomed very much and thank you healingwell.com for being there for me and others that have dealt with or are dealing with UC and other diseases.

Thanks Clicky.

Congratulations on your choice to have surgery.  You seem pretty comfortable with it.  I was just wondering if you and your GI doc have talked about Remicade/Humira?  Just wondering.  Good luck on the surgery.

MyUC

I am currently between the two surgeries. I have the second one scheduled for 24 Jan 11. I am very happy I had the surgery. In fact, had they told me they could not complete the reversal, my life would still be better with the ileostomy and living with the bag. I don't have the bleeding, the urgency, etc. Several people I have talked to said they waited several years before the surgery and wish they had done it long before. The flareups and blood loss is horrible with UC. I was in constant flare-up mode, it feels nice to have energy again.

There are a ton of really good blogs on the surgery. Good Luck.

Mdbuckeye--are you from ohio? If so I would really suggest you visit the Cleveland Clinic. I had my surgery one week ago today and am doing great. I will have the reversal in April. I think a lot of the horror stories come from people that haven't had the best surgeons. I drove five hours to get one of the best surgeons in the country and at a place that does more jpouch surgeries than anyone else in the world. They were incredible. My gi said he had people at his hospital who cold do my surgery, but I did my homework and refused to have anyone in Indiana touch my colon.

Right now I am on vicadan to control the little pain I am in. I will start weening off that soon. The bag has been relatively easy to get used to but I am looking forward to getting the reversal. Yes, there was pain, but most is gone now and it was well worth it...so far.

Again, do your homework. My surgeon is an angel!!