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Ulcerative Colitis
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Posted 3/8/2010 10:22 PM (GMT 0)
hi there,

well things are not too good right now having a fare up and finding it hard

last thursday my doctor said there r 3 options for me now

1 full remove of  bowel and ill have a bag for life

2 a j pouch

3 trail of a drug called golimumab for a year

im not sure what i should do as i have a baby and im thinking i would like her to be much older if i get surgury also im 26 yrs old and would like to make the right choice but at the same time i get bad side affects from most drugs .

what would u guys do

also if u have a bag or a j pouch whats it like and r u free from uc

thanks for reading and posting

 

Posted 3/8/2010 10:40 PM (GMT 0)
I'd probably at least look into the drug trial...if the study is set up such that you might not get the actual medication (and instead get the placebo), there's no way I'd do it. Also, can you drop out of the trial at any time if it's not working for you? If you know you'll get the med and know you can drop out, I'd probably do the trial. If not, I'd for sure have surgery and get a jpouch.
(this is of course assuming you've tried all the other meds out there)

As for your daughter being young, you'll probably have a much higher quality of life (and will, IMO, be a "better" mommy) if you just have the surgery, whether it be a jpouch or permanent ostomy.
Posted 3/8/2010 10:41 PM (GMT 0)
what are you symptoms are how severe are they? Being so young I would of course make sure surgery was my very last option... of course this is coming from someone with minor symptoms...
Posted 3/8/2010 10:48 PM (GMT 0)
I'm also 26 with a baby and just had the surgery. I've had a lot of problems since then but my situation has turned out to be far from the norm. I'm probably going in next week to have the final surgery again.
Posted 3/8/2010 10:53 PM (GMT 0)
I'll answer this assuming that you have failed all medical treatment. I would opt for surgery. You're not that young for having jpouch or ostomy surgery. Lots of children, teens, and young adults have had jpouch surgery.

I had jpouch surgery 9 years ago due to refractive disease. It was the best decision I could have made and I have never regretted it. It gave me my life back free of meds and free from worry. However, I think anyone contemplating surgery ought to research the options and consult with a top colorectal surgeon. If you want to know of a great surgeon in your area go to www.j-pouch.org

Life is great post UC! Life is predictable! I can plan things a year out and know that I will be healthy and able to participate. I engage in a lot of long distance (100-200) mile international hikes and don't need to think twice before committing. You might have to limit yourself for six weeks post surgery but you will be able to commit to your child's life after your recovery.

Sue
Posted 3/8/2010 10:54 PM (GMT 0)
i have tried almost all of the drugs out there i think for me its about being there more for my girl i want to wake up and jump out of bed not say sit i can hardly walkand feel like ive been run over.
Posted 3/8/2010 10:56 PM (GMT 0)
Sue, how do you know that the surgeon listed on j-pouch.org is a good one? Are only "good" surgeons listed or any that are certified? What does it mean to be certified?
Posted 3/8/2010 11:34 PM (GMT 0)
I was 29 when i had surgery and had an almost 2 year old. I chose the perm ileo, i jsut didnt want to do an extra surgery and deal with two recovery times. With a small child ithought that was best for me. i also didnt want to worry about the very small chance my pouch would fail.
Anyway, life is great post uc,one of the best things is when i say, "when i HAD UC"
Bottom line, once that colon is out, regarldess of the surgery you have, you are cured,its gone forever. And thats so worth the surgery.
Posted 3/9/2010 12:52 AM (GMT 0)

Pam,

If you logon to www.jpouch.org and then hit "find" and type in "best surgeons in america" you will get a list of patient recommended surgeons.  Or you can always just post a note in the general discussion thread asking for recommendations in your city/state.

Sue

Posted 3/9/2010 12:54 AM (GMT 0)
i just recently had j-pouch surgery and life is good! of course you'll poop more daily than a person with a healthy colon, but after the surgery there is no urgency, no pain when going, and no more horrible medications that mess with your immune system.

i felt great three weeks after my first procedure (colon removal, j-pouch creation, and temporary ileostomy) and felt very good one and a half weeks after my second operation ("takedown"). i had laparoscopic surgery done and my scars don't look bad at all - a couple of them are already barely visible. my limited amount of daily medication consists of metamucil, probiotics, and occasionally imodium.

this past saturday i had mexican food, beer & wine and was fine that night and the day after. i'm currently doing road trips for work and planning vacations, hiking trips, and looking forward to kayaking with my girlfriend and dad this summer - all stuff i couldn't do last year during a brutal UC flare.
Posted 3/9/2010 12:55 AM (GMT 0)

suebear said...
Pam,

If you logon to www.jpouch.org and then hit "find" and type in "best surgeons in america" you will get a list of patient recommended surgeons. Or you can always just post a note in the general discussion thread asking for recommendations in your city/state.

Sue

Ahhh, thanks. I always just looked at the "find a surgeon" link on the main page and was confused because there weren't ratings or anything.
Posted 3/9/2010 1:59 AM (GMT 0)

I agree with SueBear and I would go for surgery. Personally, I would opt for the J-pouch. There are going to be challenges no matter what age your kids are when you have surgery. But I can tell you as a mom of three children that the older they get the more involved they get in sports and other extracurricular activities and it's hard not to be there for that. Also, do you plan on having any more kids? If so, you are going to have little ones for a while.

As for the trial, that is up to you. Remicade stopped working for me after about two years and I'm on Humira now and it doesn't seem to be helping at all. I can't help but think that for a lot of people, these biologic drugs are a Band-Aid and will only work for a while. Also, IMO if someone has only had UC for a short while and they've already gone up the ladder of available UC drugs, that doesn't bode well for their colon. I know there are exceptions but I figure if 30 percent of UC patients have to eventually have their colons removed, some of these people will fall in that group.

I think the more you learn about the j-pouch, the less scary it becomes. And it sounds like almost everyone who had the surgery done would have it performed again. Good luck.

Posted 3/10/2010 3:01 AM (GMT 0)
Pam,
I think I will also be faced with the same decision soon and have been trying to do as much research as possible. The website www.jpouch.net has some very detailed stories from people who have had the procedure. I thought it was very informative and really answered a lot of questions about pain, recovery time, etc that I had.
Best of luck to you.
B. B.
Posted 3/10/2010 6:19 AM (GMT 0)
I have two children, am 34 and am 2 months out of step one and will be having the takedown on 1 April!

I already have WAY more energy for my children. I am so glad that I did it! I was desperate before and easily would have accepted a permanent ileostomy - however I figured I should try to see if JPouch works.

Good luck!
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