8 month battle with UC- jpouch surgery possible

You won't be sorry! I had J pouch surgery last year and it was the best decision I could have made! It's a rough recovery but it's so worth it in the end. There is a lot to the procedure so if you have any specific questions, please feel free to ask.

PS- I have heard wonderful things about U Penn hospital. I had my surgeries at Jefferson University Hospital in Philly.

I had jpouch surgery 10 years ago after suffering through a 2 year flare. It was the best decision I have made for my health. I live a full and active life and take no meds.

Sue

I have been struggling for 3-4 years now as well and tried almost everything and nothing works. I also live in the South Jersey/Philly area, i was wondering who you recommend U Penn of Jefferson. I keep hearing about Dr Fry at U Penn. I am really scared of surgery but just know i can't live the rest of my life like this and have come to a point where i feel like i need to do something. this quality of life is not worth living. my question involving recovery... i own my business and most of my work is done from computers and the phone. is this still possible for me to do while recovering? how long does the first surgery recovery take? how long until the second surgery? how long till you start to feel normal again? any and all help would be greatly appreciated...

thanks,
Jason

thanks...how happy are you with the result? is it really life changing? any new problems from the surgery?

I don't believe Dr. Fry does many jpouches, do check with him. You really want a very experienced jpouch surgeon if you opt for jpouch surgery. Not all CR surgeons are as experienced. However, the Philly area does have a lot of very good surgeons with lots of experience. You can get recommendations from www.j-pouch.org

Sue

I think you can get a recommendation at www.j-pouch.org Over 6,000 jpouchers on that site and someone is bound to have a great surgeon reference.

Sue

Mhg26, I would try imuran before surgery, Many people have had complications and additional surgeries after the initial surgery.
I was very sick with UC for over 2 years until I tried imuran. It literally gave me my life back and I am so happy to have avoided surgery, from which there is no coming back.
I think you have to find a balance of diet, exercise and meds that work for you. But as I said, I am living proof that even when the docs say surgery is needed, that doesn't mean they are right.
Exhaust every thing else, & I mean EVERYTHING before having surgery.
And read this study -make sure you are totally informed:
http://www.internalmedicinenews.com/specialty-focus/gastroenterology/single-article-page/colectomy-not-a-final-cure-for-ulcerative-colitis-data-show.html

I agree with trying everything you can before having the surgery. I am 26 years old and had UC ruin my life for many years...diagnosed at 16. I had a lot of allergic reactions to the meds, Imuran gave me pancratitis for instance...But 2 years ago I had the total colectomy....went through the steps as described above. And for about 6 months or so I felt a complete change and what I thought was 100% better. I do have severe diahrea but I had that before the surgery..it was better because the pain and bleeding were gone. Well I am now experiencing some severe difficulties and currently have no insurance to get help....bloody stools with mucas and severe itching and burning in my anus and rectum...does anyone have any suggestions for me? I am beginning to wonder if I don't now have Chrones disease.... 

Mhg26,
This is collicat's son talking. I am now 20 years old and had my J-pouch surgery when I was 18. These surgeries are a huge decision to be made. You should only partake in it when you are ready for it. For me that was the biggest issue. I was also horrified of the thought of surgery. I had tried Remicade for a few months and at the beginning it worked perfectly, but as time went on it slowly and slowly started to work less effectively until it would only work for about the first week (I would be infused every 3-4 weeks). At this time my GI specialist set me up to talk with a surgeon (Dr. Helen Macrae, Mount Sinai, Toronto). I went to talk to her and was barely even listening because at that time I was so against it and never wanted surgery to happen. It then came to a point where I became allergic to remicade and could no longer take it. I then had one other option, imuran, but was told that it could take up to a few months to really start to work. prednisone was working less and less and being on a very high dose is very intrusive to your body, and I did not want that. After hearing this my decision for surgery was pretty much made for me. For myself being ready for surgery came when I either had to face another few months of being very sick without knowing imuran would work or going through surgery knowing for 100% certainty I would come out of it feeling better.
I was told my surgeries could happen in 2 steps if all went accordingly... However, this did not end up being the case. I was also told that it could be done laparoscopically (done with very small incisions). I had my first surgery and it went quite well. However, it was not done laparoscopically due to the sevarity of my UC. I had a small "hick-up" after surgery called illius (your intestines kinda shut down) however this passed after about a week. I had the bag for about 6 months before my next surgery. During these 6 months you feel like a new person. You are not always running to the bathroom, in fact you do not even need to scope out everywhere you go for where the nearest bathroom is. It feels like a totally different life. The disease is out of your body and you feel like a new person. Many people decide to stop her and have a perminant bag. For me, being 18 years old, this was not what I wanted. I had decided from the beginning that I would go all the way and get the J pouch. I needed 2 more surgeries (not the one I was told in the beginning). My next surgery date came and this was supposed to be the hardest one. The innitial plan was to construct the j pouch and attach me all up in one surgery, but during this surgery the staple gun miss fired and they had to open me up and stop the j pouch surgery all together. The wait until my next surgery was not fun. I went through about 4-6 weeks of some pretty crappy times (not trying to scare you). Yet, if I did not do the surgery I would be in great pain doing nothing anyway(note* most people would not go through this 4-6 weeks of crappy times, this was just my luck). My 3rd surgery came and went very well. I now had a J pouch with a full life without UC ahead of me. The J pouch took some getting used to with a lot of sitting on the toilet, it almost felt like I had UC again just without the pain and blood. This time is very short 1-2 weeks of getting used to the pouch. You need to know this though because it can be very disconcerting, but just know that you will pass this point very quickly.
I now look back on that period of time in my life when I had UC and it seems surreal. Its been about 2 years since my last surgery and I am living my life like a "normal person". I go to the bathroom about 6 times a day now. That may seem high but it just becomes your life. It becomes your "normal". I hope this was a help and if you need someone to talk to I would be more then happy to talk, as what i just wrote only breaks the surface.
P.S. I disagree with the whole, you need to try everything first. You do not. You need to do what you think is best for you and what you feel comfortable with. Don't let people make you feel like you need to do one thing or another. I know everything will work out!

just bumping....My son replied to Mhg26 and I would just like her to see it

I still don't know how I feel about surgury. I've never quite gotten into remission after two ears of treatment, but I did get enough improvement to function most days. If I was in the hospital on IV steroids, or my colon was about to perforate, I would not hesitate about surgery. I think I might stop at the bag and not go all the way to a j-pouch, but I don't know. I will give 6mp a try if things get worse or never improve. I may be much more pro-surgery if I am still having daily symptoms after a couple more years. I have already had part of my colon removed for other reasons, and the experience/recovery was not easy at all. I suspect I am the guy who will get all the complications and problems, and there are other medical issues.

I did find this diary account of one fellow's surgery and j-pouch to be very interesting and informative: http://ucstory.wordpress.com/about/  Check it out.