j-pouch surgery done

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Devin
Regular Member


Date Joined Dec 2005
Total Posts : 40
   Posted 11/24/2008 10:10 PM (GMT -6)   

Hi All,

 

I had my j-pouch surgery on Nov 13 08; I got out of the hospital Nov 21 08 so I thought I'd post an update.

 

First off, some background: I’m a 30 yr old guy from Canada.  I had 4 yrs of severe UC (2002 - 2006); nothing could tame it and my life was in shambles.  If you look back on my previous posts (from a few years ago) you will see the whole gory UC story.  I got a colectomy with ileostomy in Aug 2006 - this surgery turned my life around and was well worth it.  I highly recommend it to someone who is at their wits end with UC.  But 2 yrs + with the ileostomy was enough, so I opted for the j-pouch.  Note that my doc did the pouch creation and take down all in one step.

 

My hospital stay was relatively short (compared with my last surgery).  I attribute that partially to being in good health going in, and also knowing what to do post-surgery (i.e. walking a lot, gradually introducing fluids, food etc…) Hospitals are no fun, so I was really glad to get out in only 8 days. 

 

Thus far things seem to be going smoothly post surgery, all things considered, thank God.  Everything appears to be “working” as expected.  My primary complaints right now are the bloating (sometimes severe), number of bowel movements (15+ per day), butt burn, and urgency.  My understanding is that the j pouch is adapting and expanding, and these problems will hopefully disappear within a few weeks.  It is slightly discouraging dealing with this stuff because I was in such good health with the ostomy, and now its like I’m fighting an uphill battle to health again.  But hey, who said it was going to be easy right?  Anyway, any tips you want to pass my way feel free. 

 

I’m taking this time off to grow a beard for the first time in my life, and the surgery weight loss plus the scruffy beard makes me look like a real bum haha but hopefully that’ll turn around too.

 

Take care,

 

D


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 11/25/2008 6:36 AM (GMT -6)   
My experience was that the bloating was purely a post-surgical phenomenon; four months out, I have none of it. You will go a lot at first, although I didn't have much urgency (though I had my surgery done in two steps instead of one, so it may not compare). I find that Metamucil and Imodium slow down my gut a lot, so my #1 tip is to start experimenting with them as soon as your surgeon clears you to do it. The difference, especially at the beginning, was very dramatic. I went from hating life to feeling almost completely normal in about 12 hours.

What are you doing now for the butt burn? There's a list of remedies as long as your arm, but I don't want to waste your time with things you've already tried!

I have been really satisfied with the results of the surgery so far, and hope you will be too!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 11/25/2008 10:17 AM (GMT -6)   
I know it can be frustrating going from an ostomy to a jpouch but it will get better. Expect to see improvement in 6 week increments, not days. Keep a food diary to measure transit times. Eat foods that reduce frequency. Some find that those foods include; rice, pasta, chicken, meat, oats, and bananas. Everyone is different so don't be surprised if some foods that are considered slow transit aren't for you. Have you tried taking lomotil or imodium to slow the transit? If not you can experiment with doses. I think I took 2 after every meal in the early days. Also, have you tried fiber? Many people rave about Metamucil crackers, they provide bulk and reduce butt burn. A great ointment for BB is calmoseptine. You can find it in stores that sell ostomy supplies or order it online at www.calmposptineointment.com

Hang in there!

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 12/22/2008 6:35 PM (GMT -6)   
I had my j-pouch created and ileostomy reversal in one surgery about 4 weeks ago. I was in the hospital for two weeks, but when I got home, everything was fine until the butt burn kicked in about two weeks ago. It was very severe and I was miserable the whole time hoping it would eventually go away. Here's what I found helpful and cured it in 48 hours.

I began following the BRAT diet...eating only Bananas, Rice, Applesauce and Toast. Also, I switched to only drinking water (nothing else) and lots of it which seems counter intuitive (about 2 liters a day). The food almost instantly bulks up your output, the water keeps you hydrated.

I also got those Metamucil cinnamon wafers, but only ate 1 in the evening before going to bed and one when I woke up. This also seemed to bulk things up and stop the relentless acid flow in about 6 hours.

This may sound funny, but I've read this on other sites as well, but if you have lots of butt crack hair, shave it off. This reduces irritation because the hair seemed to retain the acid, no matter how well you wipe, even using the baby wipes.

Also, I continued to just take hot baths to sooth my bottom after a BM. I avoided creams because they didn't seem to work for me.

I was miserable all last week, taking baths seemed to be the only solution, and I was taking about 10 to 15 a day and about 5 or 6 at night...so when I did what I mentioned above. Today (48 hours after doing just what I mentioned above), was the first day where I was able to sleep almost 17 hours in a row, with 3 short night time bathroom trips without any burning and without taking baths, I feel much better now. I'll start weaning off the BRAT diet and see what happens.

I eventually want to try to control the butt burn with as little medicines as possible. The wafers seem like a good start, but I'll also try controlling it with diet, since I think that is a larger cause of butt burn. I also know in a few months, my pouch should start functioning and hopefully I'll be able to eat just about anything and get off the wafers as well. But at least I know how to stop butt burn quickly if it happens again.

Foods that I avoid currently are tomato sauce in pasta, lemonade, and orange juice.

Hope this helps others out there going through what I am.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
8/05/2008 - Unexpected surgery to remove blockage caused by scar tissue
11/20/2008 - J-Pouch and ileostomy Reversal Surgery - finally normal again!!!
"When life gives you lemons...make lemonade"


spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 12/22/2008 7:30 PM (GMT -6)   
Devin, I had my lieo reversal on Nov 14th, so pretty much the same day as you. I've been extremely lucky in the sense that after a week of hell in the hospital I've been doing great. I'm not sure why a surgeon would do a pouch and takedown as one step, it seems more logical to let your insides heal. That being said, you may want to eat really simple and easy to digest foods for a while so as not to irritate the pouch too much. Logically it seems like fiber from food sources would be too rough on your pouch, but something like benefiber (the kind that completely dissolves in water) may be ok.

My one big recommendation is for butt burn. I don't personally have it, but I think that's in large part because I have a bidet in my bathroom. My dad got it a few years ago after we went to Europe and I didn't really use it much before. But I do now and it's a godsend. I'm moving out to go to college (finally!) next fall and am really going to miss it. If you can get one, it'll be a great investment.
good luck with everything!
Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 12/24/2008 11:43 PM (GMT -6)   
I totally agree with GISGuy, baths seemed to be the only thing that really helped me, however I also used the Calmoseptine to avoid irritation. Diet is HUGE when it comes to butt burn, you really have to slowly introduce foods outside of the low residue diet. Once the forbidden food is through, you finally feel relief. The spicier, acidic foods would make me feel like I was passing acid shocked It does get better with time, 15+ a day sounds normal for the beginning and like Sue said look for improvements at slow stages.
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08


jacksns4
New Member


Date Joined Jul 2007
Total Posts : 18
   Posted 1/6/2009 10:46 AM (GMT -6)   
Devin, I am so glad to find you got a jpouch after 2 years! Maybe there is hope for me after 2 1/2 years I can still get one after my weight gets low enough for the doctor to do it! Did they check to see if you butt muscles were still strong enough to hold stuff in? I just feel like I would be more comfortable with the pouch than the bag! I know my long country bike rides will have to wait a while after the operation! Can you get your abbs back in shape without worrying about hernia? I am so glad there are so many jpouchers I just wish I can meet some here in Houston, Tx.? Keep us in touch with your progress!!!!

Laura Beth turn
Ileostomy April 26,2006
Ulcerative Colitus 2x 2001 & 2005
Want to get J-Pouch eventually!

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