Thanks so much for sharing your story in this blog. I hope you realize the positive impact it is having on so many people.

It’s great to hear how happy you are with the J-pouch decision 9 months in. I’m currently at a point where I’m likely going to need to make a decision myself soon, as the Remicade and Prednisone just aren’t working as well as they should.

Regarding the surgeries, I was just wondering how the healing process was? Was there a lot of pain after the colonectomy, and how long before you could kinda “function” again? Just wondering what I have to look forward to. In any case it sounds like it was definitely worth it.

Thanks again and God bless.

Chris

I just read your comment, and your granddaughter seems to have very similar symptoms as I did when I was sick with Ulcerative Colitis. I’m not sure how much I can help, but I’ll give you a little background information…

I am currently 15 years old. I was diagnosed with UC at 8 years old, and suffered with it until I was 10. Then I had the ostomy surgery. Two months or so later, I started getting really bad stomach cramps, so bad that I had to be rushed to a hospital three hours away where I had all four of my surgeries. Turns out I had a blockage. They fixed it, and two weeks later I was released. A couple months later, the skin around that area started to get really red, itchy, and irritated. My doctor told my parents to buy a cream called Ilex, and apply it on the affected area before applying the bag. The Ilex really worked for me for the last couple of months before I had the reversal surgery. You could recommend that to her parents so they can ask their doctor about it. Hope I was helpful!

-Marisa

And Yes, dehydration is an issue for most of us since we don’t have the large colon there to absorb fluid for us normally. So our small bowel is slowing learning how to absorb more fluid. The older the jpouch gets the more it will get used to its new job and he should have lower BMs and absorb more fluid. We have more BMs or watery BMs when we have lots of fluid not being absorbed. So for Megan right now, she is pregnant and dealing with constipation b/c her colon is absorbing all her fluids trying to keep up with the needs of her pregnancy. Do avoid dehdrydration he needs to watch the signs and know how to drink the right mixture of drinks to avoid it, I have a blend of gatorade in the morning (to get my salt intake to help my body absorb fluids) and then I drink water the rest of the day. Any time his muscles hurt, or he feels dizzy increase his fluids intake.

I exercise in the form of work mainly, I work with my body in the construction industry so that is my main exercise. But Megan and I do have a Wii Fit and we play that a couple nights a week and I work on my balance mainly. We used to do pilates but had to stop due to expense, but I loved pilates with the machines and we would totally do that again when we can afford it.

And please know I do feel energetic, I am energetic because I am NO LONGER sick with UC. I’ve got this great 2nd chance in life to live healthy and feel good and I will live that to the fullest that I can. I think this recovery is a lot about healthy mind = healthy body.

Mark

thank you so much and my best regards to you, and your family.
katherine.

Wow, that means you had your surgery at 10 years old. That must have been difficult to be sick as a child. Sounds like you are doing great now and I completely understand your desire to find info on UC and jpouch today. A lot of our readers and contributors on this site are people living with the jpouch. A while back over at http://www.jpouch.org there was a post running about people with long term jpouches. I looked to find that for you but I couldn’t locate it but you will find over there that many people have 20+ years. I think we have a great chance of a long live with our jpouch. Now about the belly question. Of course your doctor will be able to give you better info than me, but if you have the the vertical scar then you probably had an open surgery. Open surgery can leave different scars than lapro like mine. But if you look at the pictures from my 15 month update, you can see I’ve got a pocket of pudge around my stoma site and a little lower. I don’t know if it is scar tissue or what, but it won’t go away and I think it is from surgery. But to be honest, I just see it as a war wound that I’m willing to have if it means I’m HEALTHY!

http://www.jpouch.net/2009/01/04/mark-15-month-jpouch-update/ Your doc. may have some advice – sorry I can’t help more.

Also, if you ever want to share your story we’d love to have you blog on the site since you have such a unique story being 15 and having the pouch for 5 years! Just send me an email at mdhilton@gmail.com if you ever are interested.

I love researching about Ulcerative Colitis and life with a J-pouch. It’s always nice reading stories about before the surgery and then the recovery afterwards. I used to have Ulcerative Colitis, and I’ve had the J-pouch for almost five years. It’s been wonderful. I am currently fifteen years old and a sophomore in high school. I don’t really know why I’ve been researching more and more lately about Ulcerative Colitis and J-pouches, I guess I’m just maturing and starting to become more interested in what happened to my body, and how I can help keep my J-pouch as healthy as possible.
I noticed the pictures that you posted. I too have a small horizontal scar where the stoma was, and I also have a long vertical scar running from above my belly button down to my pubic bone. So I’m assuming that I have a bit more scar tissue than you do. Although I am not overweight, I do have a small bulge in that general area, but I’m not sure if it’s from the surgery, or if it’s just belly fat. I have a doctor’s appointment once a year for this, but it’s not until April. I will ask my doctor when I next see him, but for now-
•If it is just belly fat, do you have any suggestions as to how i could lose it? And do you know whether or not it’s harder or easier for people with a J-pouch to lose weight?
•If it is scar tissue and whatnot from the surgery, is there any way to get rid of it? Or will I have to live with it for the rest of my life?
Thanks!