Surgery for Ulcerative Colitis

Hey guys, I am currently new to this website. I have had Ulcerative colitis for 4 years, and I found out today from my doctor that I can take surgery for it. Does anybody know what this surgery those exactly ? It is called IleoRectal anastomosis , if anyone has any information on this that would be great. I am considering taking this surgery and hopefully talking to a surgeon by march of next year. I know it will be about 2-3 hours and I also know that It will be a two month recovery , does anybody know if I will be in the hospital for that long , or at home ? And thanks to all those who reply.


~SuperSaiyan1994

thanks . It's not a job that I am worried about , but school. I might be possibly starting college early in January of next year and in the summer i plan on taking it. Would i be excused for my not going to school ? And I have been reading threads on this site too , what is a jpouch and in your opinion is it better to have ileo or the jpouch thing ? I think i am having the ileo thing, it's part of the name for the surgery. Thanks again

~SuperSaiyan1994

I have a j-pouch and I got mine done in three steps. I have had mine almost a year now. You may only need two surgeries. You can schedule them around school like have one done in the summer and one over Christmas break. The first surgery is the hardest but if you have it done laproscopically you will heal quicker. I didn't go that route but if I were going to school I probably could have returned in a few weeks. I don't think you'll need 2 months off unless you have some complications. The recovery from the final surgery isn't bad at all, however, the hard part is getting used to the new plumbing. You'll be going early and often as your body adjusts. You have to be patient - things do settle down. The main thing is to find a really, really good surgeon who has done a lot of these. Do your research and be willing to travel a bit if necessary.

There are others on the ostomies board who have j-pouches. There is also jpouch.net and jpouch.org. Just remember that a lot of the people on boards are having some kind of issue that's why they are there. Most people are happy with their j-pouch and are out living life. I'm glad people like Summerstorm and SueBear continue to contribute to the board because they helped me make up my mind to have my colon yanked and kiss UC goodbye. Good luck.

Ditto BeatUC, I wouldn't remove my colon unless if had to save my life!

I would recommend to try looking into LDN - low dose naltrexone.

A few forumites who tried it and it worked for them, that was their last stop before surgery, and it saved them from having surgery.

http://www.internalmedicinenews.com/specialty-focus/gastroenterology/single-article-page/colectomy-not-a-final-cure-for-ulcerative-colitis-data-show.html

The widely held view that surgery is the “curative” option in patients with severe ulcerative colitis could not be further from the truth, according to the results of a large, population-based study presented at the annual meeting of the American College of Gastroenterology."

"The cumulative risk of additional gut surgery that wasn't part of a planned multistage procedure was 28% within the first year following colectomy, 53% at year 10, and 63% at year 20, reported Dr. Shamina Dhillon of the Mayo Clinic, Rochester, Minn."

From the study:
"Many audience members expressed surprise at the high rate of unplanned repeat surgery, particularly in light of the Mayo Clinic's longstanding reputation for outstanding-quality medical and surgical management of inflammatory bowel disease.

Dr. Dhillon's study coinvestigator, Dr. William J. Sandborn, provided some additional perspective. “I think surgery is increasingly becoming a treatment of last resort. It's not curative,” said Dr. Sandborn, professor of medicine at the Mayo Medical School.

“Half of the patients with ileoanal anastomosis get pouchitis, and 10%-20% get permanently or temporarily rediverted after their initial surgery,” Dr. Sandborn continued.

“The median stool frequency in 24 hours in our study was eight, which means half of the patients who didn't have pouchitis had more than eight stools in 24 hours.

“Fecundity in young women–the ability to get pregnant without in vitro fertilization–is reduced by as much as 80%. So this is not a cure. It's a last-ditch effort to have something besides a stoma if no medicines work.”

That study is old and poorly written. Yes, the average amount of BMs after surgery is 4-6, but the difference is you can HOLD it. Any abdominal surgery bares the risk of infertility in women, but here are many j-pouchers who have had successful pregnancies and deliveries.

Have you read the side effects of drugs such as prednisone, remicade, and imuran? They are very powerful drugs. Sure, they may make you feel good but you don't have an immune system. I would rather not have a colon than not have an immune system.

Even the j-pouch didn't work out for me, I would take an ostomy over a life with UC any day.

Hi Supersayin,

Good luck with the surgery!  Definitely consult a top surgeon that has done many surgeries.  Also you can go to jpouch.org there are many others there that have had the surgery.

In retrospect I wish I had the surgery immediately, it would have saved me years of grief and the medications have really taken their toll on me (kidney disease, liver disease and all the side effects from prednisone).  I'm on remicade now but it is not working 100% yet, so I will probably end up having surgery anyway. 

Each person needs to do what is best for them and make their own judgement calls.  Be informed and be your own advocate!

Take care,

Beth

It's funny how all the pro-surgery folks will swarm and shoot down any anti-surgery information.
It's "poorly written" etc etc. Tis is supposed to be a forum that is about support, but it seems many here don't want you to know the truth. I can understand that you people who have had surgery must talk about it in a positive way because for you, there's no turning back, but let's try to be supportive and let people make up their own minds based strictly on the facts at hand.
There is no coming back from surgery, and it can be a life or death decision.

The fact is, even if this is just one negative towards surgery study, which it is not, the facts presented are appalling.

beatUC said...
http://www.internalmedicinenews.com/specialty-focus/gastroenterology/single-article-page/colectomy-not-a-final-cure-for-ulcerative-colitis-data-show.html

The widely held view that surgery is the “curative” option in patients with severe ulcerative colitis could not be further from the truth, according to the results of a large, population-based study presented at the annual meeting of the American College of Gastroenterology."

"The cumulative risk of additional gut surgery that wasn't part of a planned multistage procedure was 28% within the first year following colectomy, 53% at year 10, and 63% at year 20, reported Dr. Shamina Dhillon of the Mayo Clinic, Rochester, Minn."

I am not rushing for surgury, but things are not as bad as this quote makes the data sound. "Overstated" or "not completely true" does nto equal "could not be further formthe truth". That phrasing is not honest.

The study found many subsequent procedures of ensuing decades, but some were minor for stoma blockage or stoma reconditioning. This included older procedures, and techniques are getting better. Also about 30% of people whit moderate-severe pancolitis will eventually have colon out anyway.

botswis-that is a wonderful way to describe things!

beatuc-we don't swarm and beat down any anti surgery material, there are risks, and there can be complications. Anytime anyone mentions surgery, you are the one who swarms in and posts outdated studies. We are giving our experiences and our support and our help to anyone who has questions. If you are against surgery thats fine, but there is no reason to post things to try to scare people.

Gidhike-I worked part of the time i had UC, and i lost one job because of it, i was "laid off" i quit 2 jobs because of it, and missed a good bit of time of another job. If i still had UC i probably wouldn't even bother with working, it was too hard on me and it was hard on the people i worked for and with.

I had j pouch surgery and it was the best decision I ever made for dealing with my severe UC. It's an amazing procedure and it gave me my life back. It's a tough surgery to recover from but I would do it over again in a heartbeat.

-Your UC will be gone
-No more dangerous drugs
-You can eat and drink whatever you want again (after your recovery period of course!)
-No more crazy, unrealistic diets to worry about


That is so ridiculous to hear people say only have surgery to save your life. What kind of nonsense is that?? I would be dead right now if I waited for my colon to perforate. (and it would have) Yikes!

You need to make sure you have a highly skilled surgeon do this procedure. So if you are considering surgery, interview a few different surgeons. I interviewed 3 before making my choice. Best wishes with your decision. If you have any specific questions, please feel free to ask.


Oh and beatUC if you are reading this: Please stop tossing out that old, tired study that isn't even accurate.

Funny.. I hated high school so I used to fake my stomach hurting kinda often. Then I got UC right around graduation time :P