new member - ileostomy on tuesday

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Lovetoski
Regular Member


Date Joined Jul 2011
Total Posts : 128
   Posted 7/16/2011 8:12 AM (GMT -6)   
hello everyone,
I'm new to this forum, but have been browsing a while, initially the crohns forum and more recently here.
Short summary so far: I was diagnosed with Crohn's in 2002, was but on Pentasa initially with the annual flares being kept under control with pred. In 2008 I had a flare and a colonoscopy showed that my crohn's spread throughout the large colon and pred stopped working. I was started on Humira aug 2008 which worked really well for about 8 months, when I started having troubles (fissures) in my rectum with a lot of blood with or without stools. A flexi sig showed ulceration in my sigmoid colon and my GI suggesting recapturing the response to Humira by re-loading Humira (4 pens/2pens/etc). the response lastes about 2 months and I was back where I started with lots of blood in the toilet. In May 2011 I finally had an MRI confirming a 2 cm fissure just inside my sphinter muscle. At theat point I was at my wits end and very depressed spending so much time on the loo and in pain, that I said "yes please" when my GI suggested a disfunctioning of my colon with a temp ileostomy. So far so good, the depressions have gone with a brighter outlokk after surgery and after 4 weeks wait my date is up in a few days July 19th. I am all set for the ileo, but in the last 4 weeks my pain in the bum has been getting significantly worse. I also developed a second skintag and constant diarreah has aggrevated my bum area endlessly and make sleeping nearly impossible.
My concern now is that the ileostomy will do its job for my colon, but won't solve the rectal issues. has anyone had similar problems and could they be solved/healed with an ileo?
feedback is very much appreciated

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/16/2011 12:06 PM (GMT -6)   
i thought that perm ileo was the surgery for crohns, cause it can come back lots of places. I'm not sure about that. I know that there are people on here who have perm ileos and crohns (peggy, cece and some others) and have been problem free for years now.
hopefully they will answer some questions for you.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 7/16/2011 8:01 PM (GMT -6)   
Just a short note ... I have CD. I had several resections and a temp ileo prior to the perm ileo. Nothing worked for me until everything that was diseased was removed. Since the perm ileo - CD FREE! 26 years now. Have some adhesion issues but certainly not CD since 1984!
CD diagnosed in 1979. Ileo in 1984. No recurrence of CD! Some issues with adhesions still.
Husband diagnosed with ALS (Lou Gehrig's Disease) March 2008 - taking one day at a time, enjoying our time together.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 7/16/2011 10:48 PM (GMT -6)   
I have no information for your specific situation...just want to wish you luck for your pending surgery and hope things work out for you.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 7/17/2011 11:31 AM (GMT -6)   
Yes, you will probably still have rectal problems...it won't be as irritated when it's not being 'used' but you will most surely have to continue meds. How long do they plan for the temporary ileo?
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Lovetoski
Regular Member


Date Joined Jul 2011
Total Posts : 128
   Posted 7/17/2011 2:02 PM (GMT -6)   
Thanks for all your replies. I find this forum really supportive. I just don't want to get my hopes up too high and see the temp ileo as magical cure. My gi hasn't yet said if and when the reversal will happen. Plan is to reasses in a few months time and to keep me on humira in the meantime. With the rectal pain now, I sometimes wish for a proctocolectomy to get it all out, but at least with the loop ileo I'll have a chance to learn how to care for a stoma before I fully commit.
Question for those who had their temp ileo converted into an end, does the surgeon use the same site/stoma and just cuts away the disfunctioned end or is he generally creating the stoma from a new bit of bowl?

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 7/18/2011 6:58 AM (GMT -6)   
Just take it one day at a time for now. Hopefully things will go well with your recuperation and the reversal will happen down the road for you when your body is healed and ready for the surgery.

Prayers and {{{Hugs}}} for you!
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 7/18/2011 8:25 AM (GMT -6)   
Hi Lovetoski,
I too am a long term crohns/colitis sufferer and have a permanent ileo, I also had lots of disease in the rectum so my surgeon said I was not a candidate for a temp ileo since I would very possibly continue to have lots of problems as the others have said its because the crohns can come back and especially if you are having rectal problems now I can't see a temp ileo fixing that problem. I have no regrets having the full proctocolectomy as well as the perm ileo. Life is much better for me. Hope all goes well for you, keep us posted and take care
Doreen
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