there is always risks, surgery is last obtion, i was the same, remove part of your colon make you go to ER 20 trips, i sugest just watch your dait and take it ezy. take hard pain medicatoin.
good luck.

Hi! I also had UC Pancolitis. I just had all of my colon removed and a JPouch created about 8 weeks ago. I have a temporary ileostomy while everything is healing up inside and am expected to have the "takedown" surgery (when they reverse the ileostomy and reconnect all your plumbing inside) in 4 weeks. So far, it has been the best decision I've made! Steroids and Remicade weren't helping at all and surgery was my only option left so I went ahead with it and feel great! There are risks to everything. But you really have to weigh your options. To me, the thought of no more steroids, no more medications is great. I have heard so many great success stories from people that have had surgery to remove their colons. The JPouch, which is technically called Ileo-anal anastomosis, is one that many people chose, but a surgeon would be able to give you an answer on what is best for you. It is done in either 2 or 3 steps. Jpouch.org is a wonderful website for those who have had the surgery and have a lot of information for those considering surgery. I was scared of it at first because I have read stories with complications, but remember that most of the people who have had surgery aren't on the computer looking for help - they are out living their lives because they have a life back that doesn't revolve around UC. I feel so much better and I still have one more surgery left, which I'll feel even better afterwards! Best of luck to you!!

Have you been on any other drugs, such as Imuran or Remicade? I also have pancolitis (since 2007) and do not want to go on any other drugs except prednisone and Lialda (or any other mesalamine type drug). I've decided if I can't control my colitis with what drug options I feel comfortable with, I may end up having the j-pouch surgery. I think the best thing to do is research all you can, and then decide if this would be the best thing for you to have the quality of life you want. I have known plenty of people who are on the stronger drugs, who now have a great quality of life...but it's definitely an individual decision you need to make for yourself. I hope you find something and you start feeling better soon.

I've had the surgery. I had my take-down this past December, so I am done and done!

I do suggest that you see a second GI though. My first GI only gave me pred and lialda then gave up on me. My second GI tried a variety of drugs, I took asocal, immuran, cortifoam enemas, flagyl, gluten free diet, mesalamine enemas, pentasa, probiotics, prograf, remicade, and sulfasalazine before I was even considered for surgery.

You need to try your options first before you consider surgery. It's a big decision. I'm not knocking surgery though, it is by far THE BEST DECISION I have ever made in my life and has changed me for the better, but I also don't think it's something to be rushed into.

If you would like to know any extra info about surgery, I created a website that documents my experiences over the past year: sites.google.com/site.ulcerativecolitismystory

Good Luck,

Sugah

I also had pancolitis and had my colon removed july 2010. I was in the same boat nothing worked. I tried every drug out there even remicade and nothing worked. I went to the er about once a month the last 6 months of my disease mainly because I was dehydrated. It has almost been 7 months and I am so glad that I had the surgery! I feel amazing and I feel like I was never sick.
If you have no quality of life and have tried everything I highly recommend it. My life is pretty much perfect now, i still go to the bathroom 5 times a day but I can live with it!!
I would get another GI and talk options with him, also just so you know with UC you have to have your whole colon taken out. They will not take just part of it out since it can spread. Good luck!

I had surgery and definitely live life alot more fully than I used to. You have to do what is right for you and only you can make that choice. For me, I tried everything there was to try except a trial drug which was the only one left and I'm quite satisfied that this was the best decision I could have ever made. Getting through the surgery and the healing process is difficult, I'm not going to lie, but in the end I would say it is worth it. Part of me certainly wishes I had done it sooner instead of suffering for so long. Good luck with whatever your decision is and if you have specific questions, I'm happy to share my experiences.
There is a spin off group for j pouchers here on daily strength - http://www.dailystrength.org/groups/j-pouch

-kelsey

I have Crohn's Disease and went through all the hell imaginable. SO-I can relate. 2 months ago I had my colon removed. AS Kelsey said, the recovery process is really tough but well worth it so far. You must make sure you have a caretaker. I didnt have the option of a jpouch so I have a permanent illeostomy. That has been really difficult to accept especially as a woman but my quality of life is great compare to where I was with an average of 24 or more hospital stays in a year!~! Good luck with your decision.

I have Crohn's disease and had surgery 2 weeks and 4 days ago. It went well, I was told I would need either an ileostomy or a colostomy but I was very lucky that the surgeon was able to cut out the stricture and do a resection so I do not have a bag. I feel better in that I have no chrohn's symtoms and I only poop once or twice a day and I have no terrible cramps!!

However, I am finding the recovery very slow, I am still quite sore inside and my appetite is not very good. Also, my blood results have come back as not normal so now I'm waiting to see my consultant as soon as possible as it may be the Imuran which they put me on after surgery causing this.

I'm just wondering if this is normal, I thought once I got the surgery I would be up and about after a week, maybe I just have no patience!

Lyns