Having surgery - scared and need advice.

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sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 7/19/2007 1:05 PM (GMT -6)   
I have UC - I have been talking with my GI for a year or so about the possibility of an ileostomy. But, about a month ago, my liver began failing because of all the meds I am on. I stopped meds, and my liver function is almost back within normal range. I cannot go back to the meds that helped me most (Remicade). My GI says the best chance I have at not having to have a total colectomy is to have the first part of an ileostomy as soon as my liver is back to normal, and before the UC flares to badly. Then, they'll wait even up to a year to go through with the second surgery to form the J-pouch. I'm glad I even have chance at having the j-pouch, but I'm scared to death about he surgery. I don't know what to expect, not really. I know what hte docs say, but please tell me the truth about what the surgery is really like, and what to expect. I'll probably have to schedule it within the next two months, at the very latest. Thanks, all.
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/19/2007 9:17 PM (GMT -6)   
Hi,

Please don't be scared. I had surgery to create a temporary ileostomy Feb. '06, and it only took a couple of days for the stoma to start working.

After 8 months of resting my colon, I started having flare-up's again, so I finally agreed to have the diseased colon and rectum removed. That recovery was surprisingly quick, too.

I'm so glad that I had both surgeries, because now I'm healthy and medicine-free.

I was not a candidate for a j-pouch, since I did not have a healthy rectum, but a good friend of mine has a j-pouch after having her colon removed due to colon cancer. She loves it and is doing great!

Wishing you all the best.

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 7/20/2007 12:54 AM (GMT -6)   
I've had my ileostomy for 31 years and life is soooooooooo much better than it was with UC. I have no pain, am on no meds, can eat whatever I want, don't have to look for the nearest loo whenever I go out, etc. In short, I'm living life as it was meant to be.

Yes, it takes time to get over the initial surgery, but once you're healed, the sky is the limit. I wear a bag, some people wear glasses or braces on their teeth. The thing about a bag is no one knows you have one unless you choose to share that information.

It is a learning curve at first but once you've conquered the bumps in the road, you'll be fine. You might experience some skin irritation at first due to leaks, but there are many different things out there to try and to use that will combat this.

It IS worth doing. I had my surgery when I was 10 years old and I've never regretted it. No way would I go back to those pre-surgery days.

Good luck.
I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/21/2007 1:35 AM (GMT -6)   
If you're concerned about the ileostomy surgery being painful, it is not. They put you under with anesthesia and when you wake up, it's all over. For the first couple of days, while you're waiting for the stoma to start working, they will keep you comfortable with pain medicine, so you feel no pain. Mine was done laparoscopically through the belly button, so there were no big incisions that needed to heal. The stoma itself has no nerve endings, so you can touch it, and it doesn't hurt.

The only thing that was painful was changing the adhesive wafer for the first time, because it pulled every little blond hair off of my belly one by one! Had I known about that in advance, I would have shaved that area before surgery to avoid having to "wax" it afterward! Now, I shave the little hairs between wafer changes to avoid having them pulled out.
Dx'd w/ Crohn's in '99 at age 28.

After 7 years of trying every med and diet on the market to achieve remission, nothing worked.

Finally had proctocolectomy and ileostomy surgery in '06 and am loving it.

I'm pain-free, med-free, and am very thankful to be healthy again.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/21/2007 8:39 PM (GMT -6)   
They are right, don't be scared, having surgery is never fun, but think of it this way, you have been sick, probably in constant pain, putting your life on hold for 8 years (i got sick in 99 too, if you have the surgery, you might be in pain, and feel bad for a few weeks, but then you will feel great! And what's that compared to a life of pain.
I haven't had mine for long, but I have gone back to work, noone has noticed, i have had leaks, mostly user error, lol. But i dealt with it and went on. The changing is the worse part, lol. It hurts when those hairs get pulled! but again that's only once every so often, i usually wear mine 6 or 7 days.

Off topic for a minute, but Shaz, do you write for a newsletter?

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 7/22/2007 5:39 AM (GMT -6)   
Cattieos, I don't, but Hollister recently interviewed me regarding my website for their newsletter. Maybe that's what you're referring to?
I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/22/2007 6:57 AM (GMT -6)   
Cattieos, when I was in the hospital, one of the nurses gave me a whole box of adhesive remover wipes. They use them to remove the clear adhesive patch that holds an I.V. in place. Those little wipes have been a Godsend! I use one every time I change the wafer. I just peel back the edge a little and use the wipe to get the rest of it off. It slides right off without any pain! Then I hop in the shower and clean the area to get the greasy residue off. They must sell them at medical supply stores. I'm still using the ones that I got from that dear nurse.

Shaz, I love your website! I found it right after my ileostomy surgery in Feb. '06, and have gotten some great tips from other ostomates (like using hydrogen peroxide as a deodorizer) and have laughed so hard at their humor! Thanks so much for offering that to all of us!

Cecilia
Dx'd w/ Crohn's in '99 at age 28.

After 7 years of trying every med and diet on the market to achieve remission, nothing worked.

Finally had proctocolectomy and ileostomy surgery in '06 and am loving it.

I'm pain-free, med-free, and am very thankful to be healthy again.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/22/2007 10:04 AM (GMT -6)   
those wipes sound like a good idea! We had some no sting stuff, i don't know if that is the same, but it made my wear time alot shorter!
Shaz-that might be it, it was in the front of a thing I got from Hollister the other day. That was pretty cool though, lol.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/23/2007 5:26 AM (GMT -6)   
Cattieos

The No Sting Barrier Film is different from the adhesive remover wipes. I've also noticed that my wear time was much shorter after using the No Sting stuff. The adhesive remover wipes I have are made by Triad. I also shave the little blond hairs on my belly around the stoma between wafer changes, and now it doesn't hurt anymore to peel the wafer off :)

Cecilia

blue85
Regular Member


Date Joined Mar 2005
Total Posts : 62
   Posted 7/23/2007 10:24 AM (GMT -6)   
I'm so sorry your going through this right now, believe me I know excately what your going through.
I had a permanent ileostomy on June 19, 2007.  My rectum was to diseased so I wasn't a candidate for the J-Pouch.  I have to say that I read every post I could find on people who had the surgery.  I will tell you that I would do it again in a second.  I eat what I want, I take no meds now except vitamins, and no more blood, painful, diarrhea. 
I do want you to know that right after surgery while in recovery it was excruciating.  They couldn't find a pain medication that would get my pain under control, so for the first hour I just wanted them to put me back under.  I read other posts that said the first thing they thought was "what did I do", and yes I did think that also, but only because of the horrible pain.  After the first hour however things were fine.  Pain was controlled with meds and I was fairly comfortable. 
I am not trying to scare you I just want you to prepare mentally for what you may experience.  I truly thought I was prepared by reading all the other posts, but I don't think they made it clear on how much pain was involved at first.  Maybe they didn't have as much pain as I did, and maybe you won't either.  I hope that everything goes great.  And again its been a little over a month now since my surgery and other than a wound that I developed by my stoma (which is healing nicely now after a wound vac) I'm doing great.  Best Wishes on an awesome outcome, and if I can answer any questions about my surgery just ask.
 
Dx: with Crohns in 10-2003 then changed to Ulcerative Colitis 1-2007
 
Proctocolectomy with Ileostomy June 19th 2007 - Doing great.
Prednisone 60 mg (currently tapering by 10 a week until zero)
6MP 125 mg po qd
Pentasa 500 mg 3 po tid
Calcium 400 mg with D tid
Iron po tid
Vit C po tid
Tylenol #3 prn
Remicade - Quit working
Asacol
Colozal
Abatacept Study
Asacol
 
 
 

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