03-29-2014, 08:17 PM   #1
Join Date: Mar 2014
Location: Stanton, California
1 year+ fistula nightmare

I've had Crohn's for about 6 years now. A little over a year ago ended up in the ER with a huge abscess inside my butt cheek. They cut a hole about 1.5" diameter x 3" deep to drain it, but couldn't find were it was being fed from. Over the next 5 months I had home healthcare to clean and pack this wound, and even a wound vac for a few months, then 4 more surgeries before he found a perianal fistula about 4" in. He installed a seton and a cutting seton to split the rectum. Over the next 6 weeks I went for weekly tightenings and ended up in the er because of the pain. Another week went by and on my last visit the surgeon told me he didn't know what to do anymore, this wasn't his specialty and the only reason he took my case was cause he just happened to be working that weekend night I came in.

So I found a colorectal center that specializes in Crohn's. They told me the first surgeon shouldn't have tried to split the rectum with a Crohn's patient cause it will never be able to heal itself. I have now had the fiber glue inserted during my first surgery with them after they removed the seton. That failed so they tried the L.I.F.T surgery, but couldn't do it cause there was so much scar tissue and damage from the 1st surgeon, so they reinstalled a seton. 8 weeks ago had the FLAP surgery, which has recently failed and got a new abscess last week which they cut open to drain.

My surgeon is out of town for a few weeks, so I can't talk to him. But does anyone know what can be done next? I've had every surgery possible I think? Should I get a lawyer for the first surgeon the butchered me up?
Thanks for any help.
04-01-2014, 03:46 PM   #2
Carrie171087's Avatar
Join Date: Jan 2014
Location: United Kingdom

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Firstly welcome to crohns forum. I can not believe that a doctor that does not specialise in gastro would try and treat you. You sound like you've had a really tough time my friend and I'm really sorry for that. I do hope you find someone who can help more than I can.
Keep strong.
04-01-2014, 03:51 PM   #3
valleysangel92's Avatar
Join Date: Dec 2012
Location: United Kingdom

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Hello, welcome to the forum...

I'm sorry that you haven't had more responses, hopefully now that you have a couple of replies it'll bump the thread up a little and more people will see your post.

I don't personally have any experience with fistulas so I can't give you any advice, I just wanted you to know that someone was reading your post and send you my support, if there's anything else you would like help with please let us know and we will do our best to get you the support you need.

coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, pentasa, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
04-01-2014, 07:13 PM   #4
Senior Member
smallfry's Avatar
Join Date: May 2012
Location: Ontario

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Sorry to hear you have been through so much in a year! Abscess/fistula are pesky buggers and can take some time. I am a pesky case but there are many who have gotten things to heal up down there. You have had about every surgery possible for these things!! Except maybe a diverting loop ileostomy to rest your butt and give time to heal. What medications have you tried? Biologics, antibiotics?

I have had my diverting loop ileostomy for a year and a half now and have decided to go for a proctocolectomy and make things permanent. I have had a good experience with my ostomy as it has saved me from a ton of extra pain!!

Crohn's disease since 2001
abscessing/fistula since 2006
seton placement for 8 months
4 cases of crohn's related iritis

Diverting Loop Ileostomy Sept.19 2012
Proctocolectomy April 16th, 2014 and off all major meds

Past - asacol, prednisone, imuran, Remicade from 2001-2008, flagyl, cipro, Humira 2011-2013, 10 months of IV meropenem
Current - T3's, prozac, clonazepam, probiotics, caltrate plus, multivitamin, vitamin D
04-02-2014, 05:28 PM   #5
Join Date: Mar 2014
Location: Stanton, California
Thanks for the responses and kind words. Yeah I've had everyone offered to me exact the one with the plug.
I've been on Humira for 4 years, but on and off the last year since they started on me. When the infection gets bad they have me stop for a month or two. I think I've been on every antibiotic, mostly cipro and flagal. But they mess my stomach up pretty bad, the surgeon wanted me to get tested for c dif, but the gastro said no I just need to take 3-4 Imodiums a day. I've been in remission for a few years...sort of the gastro says I have ibs on top of the ibd. So I still fell like crap and have a lot of bathroom issues but he said my intestines look ok so it's ibs also. But since all of this he thinks I might be out of remission, but they can't do a colanoscopy till this is over to check.
04-02-2014, 08:05 PM   #6
QueenFox's Avatar
Join Date: Dec 2013
Location: Sydney, New South Wales, Australia

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I am sorry to hear of your troubles and hope that you can find the right treatment for you and soon! I have also struggled with fistulas for over a year myself they wear you down don't they?

An alternative to humira may be Infliximab (remicade), some people switch between the two because they lose response to one or some other reasons, they are very similar but that small differences can make a world of difference for some.

I know thinking of another surgery is probably a dreaded prospect, but as smallfry mentioned an ileostomy (temp or permanent) is also a good option, it is more major then getting setons and getting an ileostomy seems daunting at first. It however gives your backside to calm down and give you a good rest. After a year with fistulas that is a welcoming thought.

Wishing you all the best!

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