Some Good News

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blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 9/11/2011 3:40 PM (GMT -6)   
I saw the plastic surgeon last week, and my butt wound went from 3 cm to 1 1/2 to 1 3/4 cm in two weeks w/the silvadene cream. The wound has been stuck at 3 cm since June or so, so this was very good news.

I was fully expecting to have to have surgery for the wound, and now, maybe not. It's hard to let myself get all the way excited, because the wound did get as low as 1 cm in May, and then it opened back up to 3 cm and got stuck.

But my expectations were so low that it was a great surprise! And I'm happy to know that something topical can help; my CR surgeon said the wound was "pristine" and not infected; the plastic surgeon said these wounds are always dirty, whether infected or not.... they are friends, and I think he enjoyed rubbing it in her face .... but she should add this treatment to her repertoire (I had silver alginate dressing for several months earlier on..... he says cream vs that is the difference between mayonnaise and cheese, in terms of coverage....)

If the silvadene stops working, I will try the microcyn that Brian84 recommends (the doc said he'd prescribe for me).

Nice to have something good to report.... wish that for everyone....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 9/11/2011 5:02 PM (GMT -6)   
YAY that's great! keep shrinking wound!! :)
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 9/11/2011 7:40 PM (GMT -6)   
Such great news!!! Congratulations :)

Eva Lou
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Date Joined Sep 2006
Total Posts : 3442
   Posted 9/12/2011 1:35 PM (GMT -6)   
blueglass, your replies to my constant questions have been so helpful- thank you! I'm glad to hear your wound is starting to heal- you mentioned that it is not a common occurence, but don't something like 25% of patients experience slow rectal wound healing, or infection? Yet another thing I'm overthinking... Interestingly enough, I've been looking up quality of life studies with a Brooke ileo, & really, everyone with one seems to be better off than without one! Despite the complications, like yours. I hope the healing tend continues for you, & that this it it.
diagnosed 2002
Asacol
Remicade-10mgs/kg- from 4/07 thru 1/10
Humira
Imuran- 150mgs/day
homemade kefir, probiotic supplement, turmeric

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 9/12/2011 5:06 PM (GMT -6)   
No problem, glad my replies are helpful.

That 23% figure comes from an article from 1999. I don't know of any studies that are newer. I guess I am just getting a sense from talking to my surgeon and nurse and from others on this list..... not reliable data, I know.

Infection doesn't mean seriously delayed wound healing, though. A lot of people get abscesses/infections soon after surgery, but then heal up fine. I had an abscess that put me back in the hospital a week after I got out -- it was much worse because I'd been on so many immune compromising drugs (could have been an outpatient thing w/out the pred).

In my case, the wound does not hurt. It's a bit annoying to have to deal with whatever the treatment du jour is, and I need to sit on a waffle pillow, and not to sit much. Biggest issues now are a) I can't swim and b) I use the laptop on the couch because I can't sit long in a chair, and that gives me other aches and pains.

But yes, these things are so MINOR compared to how sick I used to be.

It is possible to have worse issues w/the wound, of course..... one person on the list now that I know of does..... seems like a lot of folks heal up just fine, though. Since my nurse and surgeon seem surprised at how long my wound is taking to heal, well, I guess I'm going w/that.... which is not a study.

It's not like anyone who was perfectly healthy would choose to go through this surgery..... but my frame is that in so many times in history and places in the world today, I'd be dead from how sick I was..... and I am just so, so grateful that this surgery exists -- and beyond keeping me alive, it's given me an enormously better quality of life. Just amazing! But if you'd have told me 20 years ago that I'd feel that way about pooping in a bag for the rest of my life, well, I'd have thought you were nuts, no question about it.
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Perineal wound taking its time healing, but otherwise feel better than I have in years. I only take vitamins now, no drugs at all!

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 9/12/2011 9:35 PM (GMT -6)   
Hoping you are now onto a complete recovery.
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

Blueheron
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Date Joined Feb 2010
Total Posts : 720
   Posted 9/14/2011 2:07 PM (GMT -6)   
I just got back from a 10 day vacation and am so happy to hear that your wound is healing without surgery! Hope the progression continues.

-Heidi
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 9/16/2011 3:29 PM (GMT -6)   
Thanks UC wife and Heidi. Heidi, hope you had a great vacation. I just got back from finally meeting my new niece! She is only 150 miles away, but it didn't work out for various reasons. She was born a few days after I got out of the hospital in Feb, around when I decided on surgery. Worth the wait, she was adorable and a lot of fun. I guess over the years she'll mark how long it's been....
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Perineal wound taking its time healing, but otherwise feel better than I have in years. I only take vitamins now, no drugs at all!
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