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What's the best surgery for ulcerative colitis?? Plz help

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Ulcerative Colitis
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Posted 4/14/2011 7:33 AM (GMT 0)
Talked to GI surgeon and going to do surgery. He gave me A few options but want to know from those how had surgery to cure their colitis. Any info will help. Thank u God bless
Posted 4/14/2011 10:25 AM (GMT 0)
You will get a total colectomy and end up with a permanent illeostomy or j-pouch. You will then not have UC anymore. You will be cured. You have to decide what you want. You will either have a bag for the rest of your life or an internal pouch. I know many people who are very happy with either of these.

As for me, I didn't want to have a bag for the rest of my life so I chose the j-pouch. Even though it is only 10 days from take down I am very happy with the results. Right now I go 8 times a day and that will improve. There is no pain (except uncomfortable gas which will get better over time) or urgency.

Over 90% of the people who have this surgery are happy with the results. Suebear really helped me make my decision. She is our j-pouch poster child. She has had it 10 years and lives a very active, normal life. That's what I wanted.

The surgery is no walk in the park and takes place in 2 or 3 steps. You have to go to a very skilled, experienced surgeon who has done hundreds of j-pouch surgeries. If your gi gives you a recommendation and it is your local colorectal surgeon don't do it. This is a very complicated surgery and for success you really have to do your research. If you live near the mayo or Cleveland clinic it is worth the drive. They are the best. There are also wonderful surgeons elsewhere, but you have to do your homework.

You should come over to the hw ostomy forum and ask your question. There are many people there that have done the permenant illeostomy and are also very happy.

Good luck with your decision and congratulations...soon you will be cured.
Posted 4/14/2011 1:28 PM (GMT 0)
I had J pouch surgery like Disneynut66. I had it done Laparoscopically in two steps. The first step was a total colectomy and the creation of the J pouch. It's a long surgery and like Disneynut stated you need a very skilled surgeon but there are many out there. You will need a good 4 or 5 weeks to re-coop from this step. If you are very ill at time of surgery or on prednisone, they may want to do it in 3 steps. Colectomy...wait 2 months...j pouch creation...wait 2 months...then finally the takedown or ileostomy reversal.

You then have a temporary ileostomy for about 2 or 3 months. Not much fun but it's just temporary. THe second step is then performed (after an x-ray to make sure the pouch is all healed) and that procedure is very easy and quick. Recovery time is only a week or two. I was feeling fine in 2 weeks.

I am so happy with the way the surgery turned out. I can say I no longer have UC. It was tough and I was plenty scared but I would do it all over again in a heartbeat. You just have to be ready to decide on having surgery. It took me 2 years to come to terms with the fact that if I didn't have surgery I would never get better.

Best wishes!

Posted 4/14/2011 1:29 PM (GMT 0)
There is no "best" surgery but there is a surgery that best fits your life style. Start by educating yourself about the choices and then make a list of the pros and cons. Talk with people who have had each surgery and then figure out what is most important to you. That was the process I went through in deciding my surgical choice and I've been very happy with my decision these past 10 years.

Sue
Posted 4/14/2011 11:15 PM (GMT 0)
Thank u all for ur replys. I honestly thought for the longest time I was alone! Then I found this sight. I have to go bcd to do more tests to verify it's colitis n not chrons. But I know it's colitis. It will b done at USC medical center in Los Angeles CA. Dr. Andreas Kaiser is my dr. He seems like a good dr. Gotta do sum research on him too lol. Lots of homework to do. Thanks again. And may God bless u all.
Posted 4/14/2011 11:20 PM (GMT 0)
Oh believe me you are not alone!!! I went thru all the tests too to make sure it was UC and not Crohns and then I went for it. jpouch.org is also a wonderful site for information. Make sure the surgeon you choose has done A LOT of surgeries. Good luck!
Posted 4/15/2011 12:52 AM (GMT 0)
I had my surgery done at USC Norris Cancer Hospital by Dr. Beart who is now at Glendale Memorial. Dr. Beart has a lot more experience than Dr. Kaiser if you're looking for an excellent surgeon, he'd be the one to go to.

Sue
Posted 4/15/2011 1:33 AM (GMT 0)
This is funny I was just getting on here to talk about how successful my J-pouch surgery has been. I would reccommend it if it is an option. Its been about 2 and a half years but I'm basically completely normal, I go to the bathroom 3 to 4 times a day, I can run, work, work out go fishing hunting, hardly ever have to go sprinting to a rest room. I currently run 2 miles 3 days a week, work out 5 days a week, do Tia Kwon Do, Brazilian Jui Jitsu, I'm working on my Bacholors degree in criminal justice taking 16 to 19 credits a semester and have been told I will have no issues joining the force, I tried to join the army but am still working on the red tape there because of the history of UC, and finally I work 8 to 10 hours a day 4 to 5 days a week. The surgery has changed my life. It was rough Post-Op for about 6 months to a year and then things started to really pan out and get normal. The only issue you may run into is pouchitis which is like having UC again, easily fixed though the first couple times I had to go on meds now when I notice that I may be showing signs of it I do about a 3 day twice daily dose of Pepto Max. I'm 23 now and would never go back on my decision to have the surgery when I did. If you'd like any more information about the surgery feel free to contact me.
AIM: Fridgedmonkies
Yahoo: JK51Italian

Best of luck hope it goes well for you
God Bless
Posted 4/15/2011 3:02 AM (GMT 0)

Everyone's right, there's no "best" surgery for UC, it's whatever is best for you : )  I actually chose to have a permanent ileostomy and LOVE IT!!!!  I named my ileo Penelope, and have never regretted her.  I only had UC for 22 months and during was running out of time before I contracted an infection I couldn't fight, as I battled a MRSA staph infection in addition to two other staph infections, all resulting in open wounds.  I just wanted my evil colon gone, and I never wanted to look back.  Having a "bag" was a small price to pay to never have to spend time in the bathroom like that again.  In fact, I didn't have the need to ever go poo again (well, not in the sense of the normal poo)...so it was a no-brainer for me to choose a permanent ileo.  It's not for everyone, but it was definitely for me!!  : ) 

The adjustment of an ileo can take a little while...no matter how prepared you are, it's still a total shock to have a bag on your belly that needs 'emptied'...when you do go in for your surgery I HIGHLY recommend going ahead and purchasing a bottle of Hollister M9 Odor Eliminator to take to the hospital with you.  I truely believe it will make the adjustment process a little easier without having the sensory memory of the output...that was an emotional trigger for me for quite some time. 

I also suggest contacting the members in Ostomy board...they were absolutley AMAZING during my process.  I simply could not have done it without them.  Nope, just couldn't have done it.  In fact, I had really toyed the with idea of a permanent ileo when everyone around me was asking if that's really what I wanted to do b/c they couldn't do it...well, I'm not everyone, and there were many woman who were living full and active lives with an ileo...so that helped secure my belief that an ileo is exactly what I wanted, and I cannot tell you how glad I am to have Penelope. 

I support everyone's decision whatever it may be...as no matter what you choose to do, as long as it is what YOU want nothing else matters.

I wish you the best!!

smurf
Posted 4/17/2011 4:23 AM (GMT 0)
as they have all said, either surgery is a great choice, they both get you your life back and win your battle!

I chose a perm ileo, i didn't want anymore surgeries,i had a small child at the time and didn't want to be away from him or have to have him stay with my grandma any longer than he did. i didn't want the chance that the pouch might fail, it is a small chance but too much of one for me. and honestly, i never wanted to go the bathroom the normal way again!
it was a bit weird at first, and i still think, well this is kind of weird, i poop in a bag! but i never regret it! today is my 4 year "new birthday" and it's been a great four years! my life has changed since i got the bag, for the better big time! i do everything and anything now, eat anything, go anywhere, just got back from a trip actually. i was 29 when i had surgery, so pretty young. i still wear my same clothes, haven't changed those.
and i'm better! i beat UC, i won! and that's all that matters!
Posted 4/17/2011 2:30 PM (GMT 0)
     I also have a permanent ileo.  Had my surgery at age 63 and my surgeon recommended I not have the j-pouch because of 1) my age 2) extensive use of prednisone (dependent upon it for two years prior to surgery) 3) other health issues.  He told me the surgeries for j-pouch would be too stressful for my system.  When I told him I had no problem with the idea of wearing a bag, I just wanted this cured!  I had suffered with ulcerative proctitis for twelve years.  Unfortunatley, they will not just remove the rectum, they must remove the colon too sad .  In the twelve years I suffered with UP, it never traveled further into my colon.  But that darn rectum was a mess.  Anyway, I never regretted the surgery.  I now have my life back and can plan to do things and go places.

     God bless and the best of luck to you!

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