Hello Everyone.

I have just joined the forum and am looking for advice on ileoanal surgery.

I am 29 and have suffered from UC for about 7 years. On the whole it has been controlled with aziathioprine (immuno suppressants), pentasa (mesalazine) and asacol foam enema. I have experienced a number of flair ups and these have occured when lowering the dosage of the immuno suppressants. Steroids have been required to bring back remission. One thing that is really bothering me is the growth of wharts on my hands and feet due to the immuno suppressants. There is nothing I can do to get rid of them, the wharts on my hands look very unattractive and my feet are starting to get quite sore and its effecting my running which is a major hobbie of mine. I am currently suffering from a flare up and today my GI specialist mentioned for the first time I should think about the pouch surgery. He is not in favour of surgery but says its only fair he mentions it to me and that I should do research on it.

So I stumbled across this excellent website and was curious as to how bad you all had UC before you had the surgery and whether its something I should consider even if I can control the UC on high dosages of immuno suprressants.

Thanks in Advance

Jon

Jon,

WOW this is a major decision for you. I had UC for 12 yrs before surgery. I opted for surgery as I had been on steroids for so many years and could not get off and still had problems with all the meds and had no QOL(i can still tell you where every bathroom is in every store practically in mich old habits die hard)
I applaud you for doing lots of research and not taking this lightly. Good luck
michelle

It's great that you have the time and energy to do research and gather all your facts and pros/cons before considering surgery.

I only had been diagnosed with UC for two years when things got really bad. I was on 80 mg of pred daily, along with many other meds and nothing was working to control the UC. I basically had no choice but to have the surgery. I don't regret having the surgery as I was too sick to do anything but run to the toilet and get back into bed. I still am having issues and they are checking on the possibility of Crohn's but most days I am better off without the Colon.

there are many who have also chosen to have a perm ileostomy and are quite happy as well.

Best of luck with your decision, it's a tough call to make when it seems that most times the meds can keep things under control.

Hi Jon,
My gut feeling ('scuse the pun!) is that if you're able to lead a life outside your UC most of the time, I'd probably wait a bit with surgery. I personally feel that surgery should be the last resort. When I had mine I was on the loo 100 times a day (as in all day, all night) and had no life. Off work, chained to the flat, not able to carry a conversation without having to sprint red-faced to the loo, and having only about half a minute's warning from the first cramp to full lift-off. I had no life. Surgery was hideous, but when I finally got to the end of it all, I got my life back. Today, I'm back at work part-time, slowly easing my way into working full-time. I can sit in traffic, go shopping, go to the cinema etc. etc. If you can still do all these things, but dislike having to live with medicines and all their unwanted side effects, I personally don't think it's enough to warrant surgery....yet. The surgery doesn't necessarily mean you'll be rid of medicines in the future. I'm lucky - so far I'm medicine-free. But lots of people have to deal with pouchitis, cuffitis etc. I can understand your misery at the horrible things the drugs do to us, so I don't in any way mean to imply that you should put up with these things indefinitely. My advice really is just to try to ask yourself how much of a life you have at the moment, and whether you've reached the end of the road. Hard question, I know. Especially when it's robbing you of a favourite hobby. But you're in remission in between, right? And I assume you can get the warts removed? So in between the hard times there are better times? I'd hang in there a bit longer, I think. I reackon that no matter what you decide, you've found the best possible web site to get advice and honest opinions. I wish I'd found it earlier! Good luck in reaching your decision.

Jon,

Welcome to the site!

I have UC and am awaiting surgery. I had a mild case of UC for a long time, but a year ago the meds stopped working and now I am in perpetual flare-up. I've had to stop running, which is the least of my problems, but you can understand how difficult that is!

Most people seem to get surgery only when it is necessary or when their quality of life is the pits. If you're not there yet, you may want to defer surgery for now. But going forward, you should keep a couple of things in mind. First, the meds, even the steroids, can stop being effective. That's what happened to me after 19 years. Second, as you are aware, the meds can have negative effects. Azathiopyrene can cause liver damage and birth defects. Third, with UC there is also a higher risk of colon cancer.

In summary, even if you aren't getting surgery now, it is good for you to educate yourself about the risks both of surgery and of no surgery. People don't need to rush into surgery, but they also shouldn't delay it when it becomes the best option.

Cheers,
Kevin

Hi Jon. I am 28 and I had UC for 10 years. It was very mild at first but continued to get worse over the years. I just had step 1 on Jan 9 and step 2 on March 2. Bottom line is that I should not have wasted so much of my life feeling like hell. Meds did not work for me. I tried the pred, but hated the effects. It worked at first but then it was like my body became immune to it in only a few weeks. I needed to make a decision on where I saw my life going. Did I want to keep trying drugs for months at a time only to be disappointed and not well still, or did I want to get rid of UC all together?? I chose the surgery. I am glad I did. The surgery was rough...especially the first one. But overall I feel great. I am in the bathroom a lot still, but it is getting better. Most importantly though is that I do not have the urgency to use the bathroom that I use to. That in itself is worth it. I still never turn down an opportunity to go to the bathroom, but if I am not near one it is OK. I am glad I did this surgery at this age. I think it helped with the recovery.
I did a lot of research before hand so I knew what I was getting into and the pros and cons. I also consulted with a fantastic surgeon! He performed the surgery. Having a great surgeon is important. It is a big decision. Look at all of the angles. If I can be of any help just write. I would be happy to help.
Good luck
Amanda