Friday, September 2, 2011

J-Pouch Surgery Basics

I know the possibility of surgery is really scary for some people. It definitely was for me. I recently heard from another J-pouch buddy of mine that before she had surgery some people were actually trying to talk her out of it and were telling her that she was weak for having the surgeries. When I heard this I absolutely couldn’t believe it! I know for a lot of people who have the J-pouch surgeries, myself included, it is not an option. If I had not had these surgeries I would have died, plain and simple. Because there is so much misinformation out there and because of the negative ideas that some people have about these surgeries, I wanted to share some information about the J-pouch surgeries.

J-pouch surgery is an option for people with ulcerative colitis as well as for people with FAP. For people with ulcerative colitis, it is typically done when all other medical options have failed, which was the case for me. These surgeries can be done in one, two, or three different surgeries, usually depending on how sick the patient is. In my case, I had three surgeries because I was so sick and malnourished. The first surgery was simply to remove my colon. After my colon was removed, I had a temporary ileostomy, which is a small opening in the abdomen where a piece of small intestine sticks out in order to remove waste into a bag attached to the abdomen. Three months later was surgery number two in which the J-pouch was formed out of small intestine. The J-pouch’s job is to essentially act as a “new colon”. After this surgery, I still had the ileostomy. The third surgery is called the “takedown” and consists of removing the ileostomy and attaching that piece of intestine to the newly formed J-pouch. After this surgery the person will be able to go to the bathroom normally again.

After takedown surgery, the patient will most likely have to go to the bathroom several times per day until their body adjusts to the J-pouch. Some people say that it’s almost like having ulcerative colitis again at first. It does get better though! After the body adjusts, which can take up to one year but is usually much sooner, the average person uses the bathroom around six times per day.

What’s hard about these surgeries is that everyone is different. One person may have a lot of problems and go to the bathroom a lot each day, whereas another person may do great and only go to the bathroom three times every day. You just never know. I think maybe that’s what scares people so much about these surgeries.

In my opinion, J-pouch surgery is a fantastic option for people with ulcerative colitis. Yes, as with any surgery, there are risks and things that can go wrong (obstructions, pouchitis, cuffitis…) and there’s always a risk that the J-pouch will not work as it should. But these risks are rare and for most people, life with a J-pouch is a million times better than life with UC.

Life after J-pouch surgery…for most people, including myself, is great! There are things that are a little different, like going to the bathroom more often, but they are completely manageable and although there are more bathroom trips, unlike with UC you can hold it until you can find a bathroom. For me, there is nothing I can’t eat and nothing I can’t do.

I want people to know that J-pouch surgery is not the end of the world. If you have to have surgery you are not weak and you did not do anything wrong. It is possible to live a normal life and a good life after these surgeries. For more information you can visit my website at www.ccddsupportnetwork.com.

4 comments:

  1. Wow! So glad I cam across your blog. I just had my colon removed in May (was severely malnourished, weighed 90lbs at 5'9") and am doing it in 3 stages as well. The second surgery to form the j-pouch is set for this month on the 22nd. It will be laproscopic, so the surgery itself I am not to concerned about (although I know the risks), but lately I've been wondering about the j-pouch and wiether I should go through with it vs just keeping the illeostomy. My husband and i want to have another baby, and the surgeries were an answer to that. My only concern now is how much freedom I have with the ostomy bag and if it will still be that way with the j-pouch. I've come to the desicion that I want to go ahead with the last 2 surgeries, have the j-pouch, give it time to heal and go from there. I figure I can always go back to wearing a bag if need be. Thanks for the encouraging insight. I agree surgery is not the end of the word nor are you weak for having it, in fact I think you have to be quite strong to go through it.

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  2. I'm so glad you found it too! Your story sounds pretty similar to mine. My husband and I want to have children as well and it was devastating to me knowing these surgeries could impact that. For me though, I just couldn't deal with the bad anymore. I couldn't wait to get rid of it! Keeping fingers crossed that we won't have problems, but you never know till you try :-) I think you are doing the right thing by going ahead with the j-pouch. You are absolutely right in that you can always go back to the bag if for some reason things don't work out with the pouch, but I think they will :-) Just keep thinking positively, try to be patient and let us know how your next two surgeries go. Good luck!

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  3. I am glad I found this story! I will have to have this surgery soon. It's nice to know that it will get better.

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  4. not to offend anyone,but w/ all the medical advances in this field every year,unless u have cancer, i don't believe being dis-emboweled is practical. i have crohn's/colitis,& this is just my personal opinion.i feel as though any risky surgery should never be elective, & should always be a last-ditch effort. imagine a breakthrough drug being developed five years from now...u cannot replace what is not there !

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