UOAA Discussion Board

Hello everyone,
I recently finished a set of 3 surgeries due to UC causing my colon to burst. I lost all my large intestine and am now rockin a J-pouch made at the end of my small intestine, which is trying to perform as my old wiring used to. I just got reconnected and was only in the hospital for a day then released. I was super excited but then the real pain set in a few days later and I don't know if it is normal or not. There is enormous amounts of pain in my wound where the stoma was peeking out, little sections that are super sensitive to touch and burn like the fire of Hades when water is used to try and clean a bit. It does not look infected and I am not running a fever...so trying to get a handle on that.
Secondly, using the restroom has been a true test. I need help understanding what is going on and suggestions from anyone that has lived this. Every time I go to the restroom I never know if it is just to pass gas, urinate, or pass stool. The only thing I feel is huge amounts of pressure pushing out my rear end. It feels like 2 experiences, a football is coming or my intestine is trying to escape from inside my body, always burns as well. The surgeons left me with these words, " Use this cream after every stool, you'll most likely be taking Imodium for the rest of your life, it is going to be difficult adjusting to the need setup but in time you'll find your groove." Something along those lines, had me thinking this recovery would be a breeze after the experience of the first 2 recoveries.
Anyways sorry to ramble, this is my first go at a forum, can anyone give me a little guidance on best practices.

Pat:
Very few individuals on this forum have the type of reconnection that you do with a j-pouch, so responses to your post/thread may be sparse.

MDJunction has a very active UC forum with individuals who have j-pouches. You might visit MDJunction and connect with the UC forum. I think that you would find more individuals sharing the particulars of j-pouch training.
- Karen -

I lost all my large intestine also. I had a reconnection directly to my rectum with no J Pouch so I can't give you any help in that area. I can suggest....use baby wipes, not TP. If you can afford it, get a bidet/toilet seat. The bidet helped tremendously. The less you touch your bottom the better. I use Butt Paste...otc Walgreens. It helps (when the stool goes through your system so quickly there is a lot of stomach acid in it). That's why it burns. Try to slow everything down and thicken it up a bit. Immodium (otc) and Lomotil (requires Rx). The first couple of months will be difficult re your BM's but should calm down or at least level off. Talk to your doc re possible pouchitis or other infection. Very common with the J Pouch. Good luck to you. Doris

You might want to try the http://www.j-pouch.org/ site. They also have discussion boards and they are all for j- pouchers. My thoughts will be with you. Take care.

Hello PatWagner9,
I joined this forum because I see not many are actually rocking the J pouch and wanted to answer. I have had mine for 14 years and would make the same choice again. My sister has an ileostomy, my dad had the Koch pouch. I thing the J pouch is the best option. It definitely takes a bit to adjust as your body heals and you adjust to it. I don't remember anything about the wound where the stoma was so I can't help you there. As far as using the restroom, you are teaching your body all over again. Its been awhile for me but the difference in urgency is the pressure. The capacity of the pouch will increase as you train it. At times I can control urinating or passing stool separately however most times its together. I ride horses on the trails so have learned to take lots of TP. Gas I can definitely recognize and there is a lot of it. I keep a bottle of gas pills with me and take at every meal. I was told by my doctor to take charcoal pills but I don't feel it works as well. As for the cream, Use the barrier cream link shown below. Its the ONLY thing that works. I did find a generic version of the same thing at walmart. This is a pain that gives new respect to screaming babies with diaper rashes! If you have a runnier ointment, throw it away, it doesn't cut it at all. Anything with Aloe is too thin. You won't be using this forever, I promise. Just until your skin gets used to the more acidic nature of the stool.
If you have any other questions don't hesitate to ask. I will do my best to answer them.

https://www.google.com/search?q=skin+ba ... v9HOv1M%3A

If the link doesn't work, the cream is by conva tec, skin barrier cream, blue and white tube.

Here is my complete story on my ileostomy and reversal/takedown/reconnection on what I went through up to my 5 year mark, and many other people's comments and experiences in the forum. I am sure it will be of great help to anyone facing this type of thing. Its hard to find all of the info in one place, so I created this website to help. It talks about what to expect after surgery in the hospital and at home, what to wear after getting an Ostomy bag, how to put one on, about bowel movements and how to improve them, and the list goes on.
http://ileostomyreversalsurgery.webs.com/