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Crohn's and fistulas


Tue, July 02, 2013 8:52 PM

I've had this lovely disease for 15 years now and on top of arthritis, degenerative disc disease, high blood pressure, serotonin problems, sciatica nerves burned, 4 major  abscesses  removed, a colostomy bag to try to help with a rectovaginal hernia, IV infusions of iron and 14 surgeries to "fix" my fistula....my fistula has gotten worse!!! Oh and bc of my surgeries I have had one hernia repaired and now have a new one....I'm frustrated with this fistula because my docs don't seem to care about the pain from it as well as the pain from Crohn's itself!!! I need some advice on what to do- can anyone help?... I'm frustrated with all of it!!

FPO crohnie15
Joined Jul 2, 2013

Fri, August 02, 2013 2:34 PM

 Reply posted for crohnie15.

As most of us Crohnies have numerous bathroom trips- mine are normally 10-20 times a day.  About 3 days ago, I had this severe pain in my lower left abdomen and have not had a bowel movement since. I also have that hernia above my belly button from previous surgery, I'm becoming a bit scared with this! The pain was so intense I almost passed out- I'm bloated and very sluggish (anemic as well- iron level at 6.7). So I ask anyone if there is something recommended to help- I've tried laxatives to no avail. Don't know what to do now!!

FPO crohnie15
Joined Jul 2, 2013

Fri, August 02, 2013 2:16 PM

 Reply posted for crohnie15.

so I have had Crohns all my life.  Plus I have been dealing with fistulas for the past 4 years now.  I ended up going to the Cleveland clinic for surgery, and about a month later they have come back.  I have not found any medicine that really helps to heal the fistulas.  It was recommended a bowel transplant, but not sure if that is a good idea since the intestine normally only lives for about 5 years.  I found another drug that is used in Canada that has an extremely high success rate but not sure if the side affects out weights the benefit (temporary paralysis for a few months).  For the most part I am learning to live with it.  The hardest part for me is the fact that ostomy pouch does not like to stay on.  I have now gone to carrying a big purse with me and I get 2 of every outfit so that if it leaks at work I can change easier with out people making a big deal of it.  So if anyone has any ideas or tricks that help out. 

FPO ekruiz
Joined Aug 2, 2013

Tue, July 02, 2013 8:55 PM

 Reply posted for crohnie15.

I've been on every medication known to our Crohn's community to try to fix the fistula as well, but to no avail!!

FPO crohnie15
Joined Jul 2, 2013

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