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Ulcerative Colitis
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Posted 8/2/2010 7:02 PM (GMT 0)
1) how bad is the scarring? ive google imaged a few and tried a search on jpouch.org but didnt find much as far as pictures, and some of the ones I found were extremely large and noticable from the scars themselvs to the stitch and staple scars as well. How common is the incision made vertically through the belly button down to the groin?

2) how long before you can become active again? I like to work out, P90X, lots of basketball when I can.

3) How common are accidents and leakage? leakage was a pretty common word in some of the first few pages of threads on jpouch.org but most were about pouchitis, are they always connected or do leaks happen regularly even without pouchitis?

4) Ive never had any upper GI testing done or gallbladder tests, my GI has prettymuch been set in stone that its UC and only UC just from colonoscopys, should I have testing done before I decide to opt for surgery just as a precaution or is it just that highly unlikely that I have any other GI problems affecting my UC as well?

Posted 8/2/2010 9:02 PM (GMT 0)
1. 9 years later and my incision is all but faded. Mine is about 5" and runs from the base of my navel to my groin.
You should ask your surgeon about his/her thoughts. Based on physiology some people have much longer scars. I don't mind mine; I was disappointed at first but very quickly learned that it tells a story; my body is a lot more interesting than the average person and I like that. If you are vain you might inquire about lapro surgery. My incision was also super-glued, no staples or exterior stitching.
2. My surgeon doesn't release patients until they have walked one mile in the hospital and then required us to continue walking. I was back to hiking within 3 weeks after my first surgery. After my 2nd surgery I was up to 10 miles; did a hiking trip in the Sierras after 6 weeks, and a half marathon at 6mos.
3. Most of us are fine. Jpouch.org is a skewed vision of what life with a jpouch is such as this site can be skewed for many people with UC. People only tend to go to that site if they have problems. However, I would encourage you to go to the best possible surgeon with lots of jpouch experience even if that means you have to travel. I opted for a metro hospital 2 hours from home with one of the top CR surgeons in the world. I was not disappointed.
4. Again, consult with a CR surgeon. He or she may or may not want additional tests. My GI thought I had Crohn's but I thought I had UC. My surgeon said I had classic UC. In the past 9 years I have been extremely healthy and take no meds. I"m also old!

Sue
Posted 8/3/2010 2:18 PM (GMT 0)
Brad1821,

I would tell you the same things as Sue....it is very important to get the best possible colorectal surgeon that you can.

My son is 5 months post his reversal (he has a functioning J pouch). The surgeon had planned to do the surgery laproscopically but, as things did not go 100% by the books, he ended up with an incision from about 2 inches above his belly button to his pubic bone. He also has a couple of horizontal incisions. He is 19 yrs old and, although he would rather not have his scars, he is coping really well. He wears a bathing suit (which of course is down around his ass...lol) and thinks nothing of his friends seeing his scars. Everyone, who he cares about, knows what he has been through and all of them view these scars are just a symbol of his renewed health. As well, they have faded dramatically over the past few months and our family doc says they will still fade a lot more.

Our GI, even though he said he "knew" it was UC, wanted an ultrasound of my son's small intestine prior to surgery.... just to, in his words " make sure there are no surprises".

As to accidents/leakage....the first few nights in the hospital my son did have some leakage. By the time we came home everything was fine and he has not had one problem since. Leakage at the very beginning is very common. The intestine is still very swollen from surgery and thus secretes a lot of "watery stuff"....this make the stool VERY loose. As the swelling goes down and you start eating more food the stool thickens up and the leakage improves.

Any other questions...we will happily answer.

Cathy (and Dillon)
Posted 8/3/2010 2:21 PM (GMT 0)
I guess this is kind of a hijack, sorry about that!
But I am wondering about having the surgery 2 hours away. I too am thinking about that (Mayo Clinic is just 1.5 hrs) but wasn't sure if that was a good idea. What do you do if you need quick help after coming back home?
Thanks for your thoughts!
Amy
Posted 8/3/2010 3:15 PM (GMT 0)
Amy,

My opinion is that if you have a terrific surgeon, the chances of you needing to return to the hospital are reduced. Sure things might come up like partial obstructions or dehydration, but those can be dealt with anywhere. Go to the Mayo. They are outstanding.

Sue
Posted 8/3/2010 4:15 PM (GMT 0)
I am with Sue. Go to the very best colorectal surgeon that you can. This is very complicated surgery during which a lot of judgement calls need to be made. You want someone who has done a ton of these surgeries. Yes, complications can always arise afterward (my son had an ileus after the first surgery and blockages after the second) but the most important thing is that the surgery is done the very best that it can be....this is for the rest of your life. We are an hour away from the hospital we chose but even with complications it was that emerg that we went to. If at all possible, if you have a complcation after you go home I would travel to the original hospital where your surgeon is. I think it is so important for someone to know your whole history inside out. One time we travelled to the hospital on a weekend with what ended up be an obstruction and the "specialist" that saw us said it was definitely NOT an obstruction and was either
Crohn's or a portion of the intestine was DEAD as a complication of surgery. On the Monday, when our surgeon came in she was furious...said there is no way we should have been told that and anyone who knew our story knew that would not be the case.
Posted 8/3/2010 8:54 PM (GMT 0)
amy-my surgery was an hour and a half away, thats where my husband worked at the time, so we knew all the people of course, helps to have a nurse for a husband :D

Brad i have a perm ileo but i can answer some of the questions.

1. My scar isnt too bad, its from my belly button down to my groin. The worst part of it is right above my bellybutton, but i dont wear shirts that show stuff anyway, so i dont think it matters. It has faded alot in the past couple of years.

2. It will be a few weeks, about 6-8 before you can lift much, but you can walk and stuff at first, it will be a while before you feel like doing alot of things. I had surgery in April, and i was walking about two miles a day by July, and in August i started giong to a gym and doing weights and 3-5 miles on a treadmill, or 10 on a bike.
I do the insanity workout now. and swim and such, and so some weights. No problems with that.

3. for the time you have a bag, leakage isnt that common once you get the hang of it.

4. The only way to know for absolute sure thats is UC and not crohns is the bioposy they do on the colon when they take it out.

regardless of what kind of surgery you have, life will be better!
Posted 8/4/2010 1:38 AM (GMT 0)
Thanks a lot everybody. Gonna try'n have laproscopic if I can not, a big deal if not I already have scars from chest tubes on both sides from an auto accident, so im already sporting some body scars a few more I dont think would matter.
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