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Support

Sun, November 27, 2011 12:57 PM

My son had his pouch reconnected 5 weeks ago. I wish Doctors would supply a mannuel, but they don't. I would greately appreciate any parent/patient who is willing to share their experience with the recovery time (knowing that every body is different), and the symptoms.

Thanks,

Mom03.

mom03
Joined Jan 22, 2010

Fri, December 09, 2011 11:17 PM

Reply posted for mom03.

Hi. i recently had an ileostomy along with part of my colon,small intestines and fistula removed. since the surgery,I cry a lot! I don't know if it is normal but I am 23 yrs old and before the surgery even when I was sick I was used to working a lot and going out a lot to get things done like running errands. I can't wear any of my normal clothes and yesterday i decided to go grocery shopping,while I was getting outta the car my bag busted and i cried for a while at how embarrassed I was. They're planning on reversing it in 6-8 weeks and I am thankful for being able to eat again without having to vomit it back up or double over in pain. I still hurt a lot from surgery though and any time i change my bag or have to empty it I keep crying. is this normal? Idk how to deal with it and just praying time goes by quickly. Any kind of support or someone who knows what it's like, please help me out so I dont feel like such a wierdo. Thanks.

hdgscte11
Joined Dec 9, 2011

Sun, November 27, 2011 3:54 PM

If he is thickening after 5 weeks, that is a good sign. After my reversal, I spoke with some people on here and after a couple months they were back on track. I however, had a difficult surgery and did not have that luck.

Since my surgery in jan 2011, my surgeon has had me on codeine and lomotil (anti-diahrea) 4x a day as well as Konsyl psyillium fiber for stool thickening. In the first couple months, I would have incontinent problems, such as waking up to a horrid mess to clean in the middle of the night. This lessoned as i became more continent, but still had problems with leaking stool, so I went to wearing diapers under my underwear for almost 5-6 months. since then, I still wear double underwear because i do leak some, but not as much as before. The main problem I have is, any time I am active (errands, working out, or even trip to cedar point), I end up with leakages, which cause irritation and chafing, more leaking cycle until I end up having to take pain meds and resting a day. (If yo do have chafing problems/diaper rash, calmoseptine lotion is a good anolgesic/protective cream).

It has taken steps in the right direction slowly, and i believe mine to be a more unique case, but dont be worried if you dont get the results as fast as youd like because as they can say it can take up to a year or so. Also, I had a colostomy bag for 2 years which may have made it more difficult. I wish him a speedy recovery.

1/13/09 - colectomy and rectum removal

9/11/09 - failed j-pouch

11/1/10 - successful j-pouch creation

1/11/11 - iliostomy reversal

ryanr
Joined Nov 15, 2008

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