Crohn's Disease Forum » Your Story » My Crohns experience

06-05-2010, 10:35 AM   #1
New Member
Join Date: Jun 2010
My Crohns experience

I have had Crohns Dz for 30 years (since I was 30 yo).
I have had many surgeries and no longer have any Colon left. My main problem with crohns is Fistulas. I have a permanent ileostomy, due to a rectal vaginal fistula. The rectal vaginal fistula was repaired in Dec of 2009 and since then have formed 3 abdominal fistulas that have connected to my abdominal wall. Some were easy to handle as they just oozed, but now I have one that is very active and is putting out approx. 30 ml o (an ounce) or more every hour. It is very difficult to manage, as it is very close to my ileostomy, and I have had to change my ileostomy aparatus several times per day. I have tried to attach another ileostomy bag to the fistula site, but it leaks most of the time. Any suggestions?
I have recently had intermittent pain and nausea with flare ups. I have found that vitamin B6 (over the counter) helps the most with nausea. But I usually have to take narcotic meds for the pain.
Sometimes I feel like "this is no way to live", but with the support of my family and friends, I have realized that I am blessed, and that others have worse conditions that I do. I guess that we who have Crohns just have to keep plodding along and enjoy each healthy day that we have.
Thank you for the opportunity to talk about this.
06-05-2010, 10:38 AM   #2
New Member
Join Date: Jun 2010
Since my last surgery, I have been laid off of my job as a Dept. Director of a local Emergency Dept., due to my extended time off from work. I wish I could feel well enough to find a new job and work in my profession as a nurse.
It is very frustrating not knowing when I am going to feel strong enough to maintain employment.
06-13-2010, 11:14 AM   #3
Senior Member
Join Date: Jan 2010
Hello DaveMU and welcome to the forum. Sorry to hear about your problems and I hope you find a solution asap.
When you had the illeo surgery, did they remove the colon and rectum? it was not clear from your post?
I developed an anal fistula and I have a total proctocolectomy done on July 9th.
-Best wishes - Dan

1. Diagnosed with Crohn's UC 1995
2. Flagyl/Cipro Imuran in 80%remission 1997 2005
3. Used 5mp, asacol, 6mp, remicade, imuran, Cimzia, entocourt, Flagyl/Cipro and enemas/suppositories until 2010 with periodic relief.
4. July 9th 2010 total ProctoCollectomy surgery! Free at Last!
06-13-2010, 05:29 PM   #4
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Join Date: May 2010
Location: Kentucky

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Davemu, it sounds like you've been through the ringer and then some. I hope you are getting all the support you need. You'll find a lot of people here with similar situations. We haven't had anything too bad since late last year with EJ's crohn's and then just a lot of bloody d. Take care.
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
06-14-2010, 01:19 PM   #5
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Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

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Hi davemu
and welcome

Gosh, poor you, you really have had it rough! but you remain so positive? That's to be commended! Admirable!
glad you found us, lots of support here, hope someone can help you with their experiences like yours, sorry I can't.
lotsa luv
Joan xxx


Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!


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