Crohn's Disease Forum » Your Story » Fistulas are the WORST!

07-19-2017, 09:10 PM   #1
xSierra's Avatar
Join Date: Jul 2017
Location: Houma, Louisiana

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Fistulas are the WORST!

Hey guys & gals, I am Sierra, I am 28 & I have been battleing crohns for 7 1/2 years now. It is the absolute WORST thing ever to happen to me. At 21 i went into the hospital thinking I had another kidney stone, only to find out I had 4 abscess in my small intestines, 7 days later I am diagnosed with crohns disease. 9 days after that I finally go home (after 16 days in the hospital). 6 days later I am back in the ER with 12 new abscess in my small intestines, 9 days later go home. Now both times they put some drain tubes coming out of my stomach to drain the abscesses, the second round i was sent home with a drain tube still installed. About a week later I end up BACK in the ER for a 3rd time with MORE abscess, dr said he quit counting at 10. A few days later I undergo my first crohns surgery and get a fistula in my abdomin to help drain the abscess out while being on Remicade infusions (which lasted 2 years). Absolute worst experience yet! It called for me to have a colonostomy bag to catch the stuff draining. Where it was located is so close to my belly button so even though the wound care nurse said it wouldn't🙄, the bag would leak. I would go a few days then wake up in the middle if the night with nasty body fluids all over the place. DISGUSTING!! So after being in the hospital a total of 30'days within a month and a half, I finally go home. Now this fistula had to heal from the inside out and would continue to drain until it was fully close, a YEAR & 3 MONTHS later. Some days it would hardly drain but others I would have to change my bandage every 1-2 hours or it was leaking out all over my clothing.

Now fast forward to May 2017..
I go to my GI dr, who I see regularly for checkups, because I had a pain in my stomach near the scar I have from the fistula. Bloodwork & CT scan later its an umbillical hernia🙄. Have 1st surgery to repair the hernia, surgeon puts me on BED REST for 2 weeks because it was SO close to the fistula he said moving around too much could reopen the fistula. Well needless to say about 5-6 days later I realize I have an infection from the Steri-Strips they used to close the incision. 2 different antibiotics later the infection is healed but I still have an open wound that is draining puss. 6 weeks after the first surgery I am having a 2nd surgery to get a wound vacuum pump. Worst week of my life because i must of had the lemon of the batch of pumps. Well now here I am 2 weeks post surgery & my doctor and I realize today that my fistula has REOPENED😱😫. Now he told me my only options are I could either do remicade infusions again or try the Humira shots to get this fistula to close back up.

I am at the point where I don't even know what to think anymore. It feels like the more I try to stay positive the worst things get. I have a step son that will be 6 soon but I do want to have a child of my own soon. It makes me even more upset when I think of how I have to put my life on hold because my CROHNS just had to show its face again so soon. But hey, like they say, it could always be worst right?!
07-19-2017, 09:26 PM   #2
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cmack's Avatar
Join Date: Aug 2014
Location: British Columbia

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Hi Sierra,

I have had so many fistulas they lost count, as did I. I eventually got better and I sincerely hope you will as well. It's odd that I also had an umbilical hernia years before the fistulas and multiple abscess issues.

Welcome to the group, I can really relate with what you are going through. Talk to me here or pm me any time.

Your new friend,

07-20-2017, 08:47 AM   #3
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Welcome. Sending support your way.

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