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Posted 12/11/2014 6:02 PM (GMT 0)
Little backround first...

I have Crohns, since 2002. Severe and not many meds have been helpful. My rectum and anus was severly infected few years ago and i had very deep and long wound from anus to retum. Nothing helped and i had my loop colostomy in summer 2013. I loved it! Finally without pain. I did have sme proplems after surgery and got diagnosed pyoderma gangrenosum on my stoma site.

Anyway, life was good until 8 months after i got parastomal hernia (from hell!!!). My stoma didn't work unless i was lying that way thatmy hernia wasback in where it should be and i had awful pains. Surgeon decided that operation was best option for me. I had my hernia surgery in june 2014, 6 months ago. They put mesh in and changed my loop colostomy to a end colostomy. Soon after surgery my stoma separated all the way from the skin and sunked. I had 5cm deep wounds around stoma and they had to be packed everyday with Aquacell wound gauze. Then my pyoderma flared too.... and here i am, after six long months, STILL having these darn wounds and two fistulas where stoma meets the skin. Poop is coming out f those too and my stoma is extremely flush and below my skin level, well you know how hard it is.

Now i think hat my crohns is in a flare too cos i have some white ulcers o my stoma and thy also bleed a little. I have another stoma surgery in anuary, tocorrect the fistulas and they put my stoma on the other side of my belly. They are trying to makeit from colon put if it doesn't reach to the otherside thy make ileostomy. I think i ask tht they just make ileostomy and remove my colon. Its easier for me. At least i don't have to do it all over again after few months if my crohns flare.

have any of you had fistulas on stoma? Hs any one have colotomy on right side of belly?

Greetings from Finland,

Jimena
Posted 12/11/2014 6:48 PM (GMT 0)
Hi Jemena
This is the first time I've replied to a post on this forum. I also have Crohn's disease, the kind that causes fistulas. Before the surgery to make my ileostomy, I had fistulas from bowel to bladder, and a fistula that went from my colon to the surface of my skin. But now, with my ileostomy, I have had no problem with fistulas.
I do, however, still have most of my colon in place. Because of my ileostomy, I don't use the colon, and have had no problems with fistulas since the surgery, or any abdominal pain at all. I just wanted to reply to let you know that, since I have this terrible fistulizing Crohn's, like you do. Good luck with any future surgery that you may have. I have two stomas. My ileostomy stoma is on my left side, which is unusual, and my mucous fistula stoma (the end of my colon) is on the right side. So my colon is detached from my small intestine, and puts out only a little mucous.
No more pain, no more fistulas, so far.
Posted 12/11/2014 7:10 PM (GMT 0)
Thanks for your reply! Yep fistulizing crohns is crazy. It is so crazy that you have poop coming out of places that it shouldn't come!

I like my stoma in general, not this one but in general. I want nice spouty stoma and looser output cos it is easier to empty. I don't think i need my colon anymore.

These fistulas is nightmare. Output goes under the wafer, what ever i do. It is sore all the time.

Hate this disease.
Posted 12/11/2014 7:39 PM (GMT 0)
I laughed when you wrote "you have poop coming out of places that it shouldn't come!" It sure was! But also, it's extremely painful, and that was the worst part.

My ileostomy stoma is a little less that an inch long, and output is either liquid, applesauce -y, or like peanut butter. That is the most solid type. It is never like normal bowel movement. And yes, I'm getting along just fine without using my colon.

If you eventually have an ileostomy stoma, be sure to use an Eakin seal or other barrier ring to encircle your stoma before you put the wafer on. Since the output is more liquid, you need that extra seal to contain it. I flatten out the Eakin seal and use very thin pieces, that works better than using a whole, thick seal.

I hate Crohn's disease, too!
Posted 12/11/2014 9:50 PM (GMT 0)
Just gotta say kudos to the both of you!!! I felt like I got a raw deal with plain old UC.... the fistulizing Crohns seems like the stuff of nightmares! Wishing you both the best. And Jimena, it sounds like the ileo could help for you!
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