internal j-pouch and not doing well...

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Sofee
Regular Member


Date Joined Sep 2009
Total Posts : 90
   Posted 3/17/2010 11:38 PM (GMT -6)   
I want to get my problems across quickly so bare with me if this post sounds a bit blunt.
I need to know what my options are.
My rectum or illieum or whatever is making me feel like I got razor blades stuck my my ass.
Been on Remicade for a year now. No sign frm blood work of active disease.
CT scan results - no signs of fistulas or strictures or anything like that.
I am at about 15+ BM's a day. Anemic - very tired, and get headaches lots too.
Not eating barely anything anymore therefore loosing weight. 100lbs soaking wet.
in 1998 I had an ostomy for about a yr. and it was hell. I hated it!!!
the stoma was not out far enough and I started to get lots of leakage and it started to eat away at my skin.
it was abosolutey horrible!!!! cry I am in fear that going back to an ostomy is my only other option.... ??????
And I so don't want to experience that again. My butt needs to heal though ... it is so sore ... I have used so many creams and ointments and its just not enough!!! I am dying to get answers!!! Where do I go from here.
I have a nasty scar from the ostomy before...
Can they do an ostomy [bag] when I have the j-pouch??
What is the process, I can't be the only one out there like this.
Please HELP. cry
33 yr. old female CANADIAN
dx with UC October 1998
had temp j-pouch: '98-'99
disease free & back to norm: '99-'07
dx. with CD March 2009
Currently taking: Remicade mthly & Imarun


In my next life: I want to be a big beautiful oak tree or something like that... so I can live off of just sunshine and water.


ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 3/18/2010 2:32 AM (GMT -6)   
Sofee,
Sorry to hear things ar not goign well.
Have you tried any fibre suppliments?  That has helped take the acid burn away for me big time.  Also adding barrier cream right before i have a BM so there is a good amount of protection there.
I do think you can have a loop ileiostomy while you have a j pouch as that was the 2 step i had while making mine.  I am sure some more knowledgable people while post here on what the options are.
Elli :)

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 3/18/2010 5:23 AM (GMT -6)   
I had a temporary ostomy for 2 months, 10 almost 11 years ago. But it was reversed, obviously. I have multiple bm's each day but I'm managing, as is for now. Lousy insurance, etc.

My surgeon has seriously recommended I have an inverted colostomy. She said the ostomy would be flush with the skin and I would irrigate it once during a 24 to 48 hour period. You use tubing, equipment from a pharmacy that probably sells ostomy supplies and from what I read on a forum provided by the united ostomy associations of america people manage quite well (url is uaoo dot org, we are not permitted to provide actual links at Healing Well). You could ask your surgeon about this type of ostomy. In between irrigations you are theoretically supposed to only require wearing a large bandaid over the stoma opening.

If you've had a lot of your colon removed it may not be an option but at least ask about it.

I hope you have relief soon.
- Rectal CA 4/29/99, Stage I, 90% sigmoid/15" of colon/GB removed, temporary colostomy, reversed 6-26-99
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Colace 50 mg each evening

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