Does surgery really cure UC !!!

Nautanki,
There are many who can advise about surgery here and there's a lot of information on the internet. My daughter is recently diagnosed and we haven't researched too much about it yet. As for the Compounds you've mentioned, my daughter with UC is taking them. She's been on them for about two weeks so far. She is very young so Dr. Verma prepared a specific dose for her. So far, we are waiting to see results with this, though he advised as from the beginning that it would be a slow process that could take several months to resolve. As for the long time side effects of steroids, there are many. Is your partner on them continously? If he flares quarterly and is given steroids each time, it sounds like he flares when he weans off of steroids? In that case he is refractory. Would it be possible to try the next level of drugs - immunomodulators?

I am having part 1 in 9 days (and counting)! I think you go into it prepared that there may be complications - but that those complications if they happen are worth it given how you are feeling with your UC.

I have had no remission in 3.5 years - I can no longer work - I am exhausted and contantly anemic and the drugs dont work. I have very frequent accients and its affecting my whole health. I would rather have an ostomy if the JPouch doesnt work than live like this.

It depends what you are willing to live with.

As Sue said for most it works well - but its not an easy fix and not appropriate for everyone. I hope I am one of the lucky ones!

There are also complications - short and long term - with the big drugs being used.

No easy answers!

What I have gathered from the internet so far is that.....

UC patients considering surgery generally go through 2 surgery 1 that creates temp opening in stomach and 2 that creates the j pouch after 6 weeks.

But incase if there are complications in j pouch, it requires additional surgeries and some times the patient is set back to stage 1 with permanent bag attached to the stomach.

And with permanent bag, there aren't much complications afterwords, more inconvenience than complication, which we both are willing to live with.

Hope I understood it right.

Btw, we are hoping to go visit a recommended local surgeon in a couple of weeks. Any pointers what we should be asking and looking for from this surgeon. Indeed we want the best of best to make sure the surgery is a success.

Many thanks for all your inputs so far.

Yes if you have UC surgery, it is guaranteed to cure it since there is no more large intestine to inflame. I had surgery and its not that big a deal, some pain and recovery are of course required but getting off the meds and not having to worry about any more flareups is a massive relief.

I had my first surgery (4 hour operation) to take out my colon (they leave the rectum) on 28th May 2009, next surgery i had which is the biggest one (7 hour operation for me) was on 15th October 2009. This one they take out the rest of the rectum and create a j-pouch from the last 40cm of the small intestine and sew the pouch to just above the anal sphincter. That operation went well also. Then the last operation you need is to close the stoma and then you can use the toilet like a normal person again, just with more frequency. I have this operation on 10th March 2010.

Worse case scenario for any surgery is death but it is extremely rare. You probably have more chance of dying in traffic than in surgery.

Second worse case is damage to the nerves around the genital and anal area of your body. Basically you can get incontinence or impotence, not have baby etc.

I want to reiterate, neither of these issues happened to me (there is something like at 5 in 100 chance) and if/when you have surgery you will be surprised how easy it is and why you didn't do it sooner. You will very likely not have any side effects like i mention, especially if you have a good surgeon. I live in Australia and this operation is done quite often.

Staying on meds long term like prednisone and the chemotherapy drugs like Azothiorprine and 6-MP are not good for your body as essentially the supress the natual state of your immune system which causes other side effects. I found home remedies etc are basically useless and a waste of money. They dont know what causes UC and cant cure it without surgery, so its a matter of deciding to wait around for them to discover a cure or get it fixed asap and move on with life.

Nautanki
Have you spoken to Dr. Verma about the compounds? If so, what did he advise? I would try it while you are consulting with surgeons. It might be effective for you, who knows?

Nautanki,
I agree, it is hard to swallow, but it seems to have been working for the person who started this thread and I know a few others as well. But for us, no effect yet. Good luck either way!

I think the rest is very small, but i will let her adress that, i just want you to know to not think of life with an ostomy as a bad thing. I know its scary, and that noone's childhood dream is to grow up and have an ostomy. BUT its not bad, its not gross and its not a death sentence. Its a change, but its a good change. So dont let the thought of that hold you back from surgery.

I guess I'll give the drugs a shot. I have to save up for surgery anyhow. i have no health insurance and I hear its about 100k for the surgeries. all I know is the only thing prednisone is good for is giving you zits. lol. thanks again.

It's common for many patients to still have urgency issues with their "new" j-pouch, for many it also gets better as the body/system adjusts, it'll likely vary from person to person when it comes to experiances with j-pouches...taking a probiotic daily is pretty necessary as well to help avoid pouchitis....

Here's a link that also speaks of some of the pros/cons of j-pouch surgery.

:)

I have suffered from severe UC, and recently had surgery, and it was the best thing that has happened. i was diagnosed at 14, and i had the opp at 17, but i had no choice. When surgery was 1st mentioned i cried so much i said i don't want it, that was that, but it got so flared up tablets wouldn't work ... so i had an emergency Ileostomy (stoma formed)

It gets rid of all or the majority of UC. The main ulcered area is in the colon and this can all be taken out. You can also have the rectum removed, so you don't get 'phantom rectum' - this is if there is colitus in the rectum, but you can help it by certain tablets. If the rectum remains, you will get some discharge from it, thats just how the organ stays clean.

If any one has any questions whos considering surgery or wants to talk to some one who has experinced both sides of having colitus/stoma feel free to message me or what ever, im happy to talk :)

 

I havent had a pouch, i have an ilesostomy (Stoma) with the option to have it reversed to an internal pouch :) for the ileostomy it is normal or them to leve the rectom there, if its removed, then the stoma will be pernement. sorry about the bad spelling!

thanks sue for the input. I love this forum, I've learned more from fellow UC sufferers than I have from all my GI's I've dealt with in the past 4 years. lol. I can't wait for the day I don't have any more flare ups.