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09-09-2014, 01:07 AM   #1
Jimena
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Fistula next to stoma

I had my parastomal hernia operation in june and then got complications cos i had severe skin separation and wounds 5cm deep. Then i got my Pyoderma flared again. Now i have new wounds and i saw my surgeon yesterday who confirmed that i do have fistula in the wound, and the track is all the way in to bowel and poop is leaking right in to the wounds. Nice, uh?

Is there anyone who have fistula next to the stoma? What can they do about it? I ask if they ever heal on their own and surgeon said that almost never I am about to start my Humira today, my GI should call me today. If that helps.

I am so exhausted with all this. 3 months, everyday woundcare, pain, blood, poop and now fistula.
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Severe Crohn's since 2002. Tried every longterm medicine there is, Pentasa, Azamun, Remicade, Humira...
Temporary colostomy 2013 -> Parastomal hernia
Surgery, mesh, end colostomy 2014 -> deep wounds that didn't heal, three fistulas around stoma
Colon removal and ileostomy 2015 -> So far so good

And after every stoma surgery, nasty Pyoderma Gangrenosum around my stoma.
09-09-2014, 09:18 AM   #2
DJW
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Sorry you're going through this.

Is the surgeon going to remove the intestine with the fistulas and relocate the stoma?

Sending you my support.
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09-09-2014, 02:31 PM   #3
Jimena
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I have very deep wounds around my stoma cos my skin seoarated and it has to heal a little bit before surgery is a option. I see my surgeon on friday and will discuss what us my options.. i have colostomy, which is a mess right now. Sunken, wounded and just BS. So i really kind of hope for a new stoma. I have been using humira since 2007 and it really has lost effect. I haven't use it since surgery and can't start it until they do ct to check tgst i dont have abscesses anywhere.

This really sucks. That hernia sucked but this sucks more. Surgery was 3 months ago and it hasn't gone any better. Just worse.
09-09-2014, 03:00 PM   #4
Absentminded
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I'm really sorry that you're having to deal with so much stuff, I know how horrible it is when you're going though it. I hope your surgeon can do something to help ASAP.

I didn't have a fistula in the same area when I had my Stoma so can't necessarily answer exactly. But, after I had my Stoma reversed, serious complications meant that I developed a fistula in my old Stoma site incision.
My surgeon said that because the site wasn't sterile, it acted much like a small Stoma (I had around 50-70mls of output a day) I didn't need to worry about keeping the wound clean, and I put a small paediatric Stoma bag over it.
It did stop draining on its own for a several months and the wound completely healed, but then it burst (my surgeon said he'd never had a patient have a fistula heal completely for 4 months and then one day just decide to burst) and in January this year I had a laparotomy to surgically remove it.

Sorry if that's no help, it probably isn't, but thought I'd share a similarish situation.



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Diagnosed: July 2009

Resection and removal of Enterocutaneous Fistula: Jan 2014
Pelvic infection Drainage: April 2013
Ileostomy reversal: February 2013
Ileocecal resection and temp. ileostomy (Say hello to Norman!): Nov 2012
Current Medication: NONE!

Past medications: Humira, Infliximab, Azapthioprine, Asacol, Budesonide, Prednisolone, Flagyl, Cipro, Cholestyramine (Questran), Fortisips.
09-10-2014, 09:21 AM   #5
glum chump
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Hi Jimena:

I don't have anything I can add that would be helpful but I wanted to send good vibes your way. I have peristomal pyoderma (still!) and a fistula, but my fistula is located in the rectal area so I don't have the same complications as you.

I do, however, remember all the complications I had after surgery...of leaking wounds, skin crating inwards, pus draining internally, etc, and just wanted to send you loads of support. It's a hard road you're on, particularly with the location of your fistula AND the pyoderma. Post-surgery healing can be enough of a rough go, without all these added complications and challenges.

I hope your appointment with the surgeon on Friday gives you some positive results. Is there any other medication other than Humira you could try? Have you had any previous success with Remicade or Stelara?

Fingers crossed for things to turn around for you,

Kismet
09-16-2014, 04:59 AM   #6
Jimena
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Thank you for your comments! This situation is just crazy. I feel so lost. I discovered another fistula on my stoma, next to the other one! I am going to see my surgeon and GI on friday again. Last time my surgeon didn't really say anything except that we need to treat those wounds. They don't heal cos feaces leaking from the fistulas straight in to the wounds!

I feel like they don't quite get it hor frustrating and hard is to deal with this stoma. I am going to upload few pictures of my stoma in my profile, feel free to comment if you like. It's not so pretty sight though.

Absentminded, was your fistula from small bowel or colon?

glum chump, i have been on remicade but i got allergic reaction from it. We don't have Stelara here in finland but i think the next step is Entyvio.
09-16-2014, 01:55 PM   #7
Absentminded
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Oh I'm sorry that you've got another one, I'm not surprised you feel lost!
I felt like that when I got my fistula, I had my Stoma reversed and then ended up still having to wear a bag!

I had a leak where they joined my bowel back together (anastomosis site?) so where my terminal ileum used to be, and the fistula developed from there..... I had a pretty big hole, about 4 cm by 2 cm to start with, although it did close up and since having it surgically removed I now have a massive dent on my stomach (like a second tummy button.)

I hope your surgeon/GI can do something to help. Sending lots of best wishes your way.


11-06-2014, 12:21 PM   #8
Jimena
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Hello again! I still have my fistula. I saw surgeon ladt friday and she decided to try stitch my fistula, inside my bowel. I mean, my fistula is very near my stoma openingi so she just pushed my stoma kind of inside out and put few stitch there. Well, it didn't help. Those stitches would have to be so tight that my stoma just shut so poop can't pass through so that's why it didn't work.

I am now waiting for my surgery date, it supposed to be early january. They are going to move my stoma to the other aide of ny belly. If they can't do colostomy they make ileostomy. That is fine for me i just want a proper stoma that sticks out enough!
12-31-2014, 09:05 PM   #9
littlefreebird
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6months after my surgery to make me an ileostomy I noticed output coming out of the base of the stoma on one side. a scope showed it was a fistula but they couldn't see where it leads to, was really shocked as I had been feeling well. have been on humira a year now and fistula is still there and active but because it sits so close to the stoma, all the output goes into the bag with the rest and ive had no leaks. my surgeon says hes happy enough to leave it for now to give me a break from surgery, will need fixed someday though, i'm hoping that's a few years down the line.
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01-01-2015, 07:01 AM   #10
Jimena
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These are so nasty. I just got my surgery date, january 9th. Next friday it is. I have now three fistulas, they all are at the base of ny stoma too. It wouldn't be so big proplem if my stoma wouldn't sunked and has wounds all over it. Now they are moving my stoma to the othet side and i want ileostomy not colostomy. Got sick of this colostomy i want good spouty stoma anf ileostomy is that's why better choice. I really hope your fistula stays the way it is now anf don't cause proplems to you.
01-07-2015, 07:15 PM   #11
littlefreebird
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good luck with your surgery, let us know how you get on, whenever I get my surgery I will also be getting stoma moved to other side so I really would love to hear from someone who has had it done.

all the best xx
01-08-2015, 04:24 AM   #12
Jimena
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I will, thanks! My surgery is tomorrow. I spoke to my surgeon yesterday and we decided that they remove my colon and make ileostomy on my right side. I am terrified!
01-08-2015, 04:42 AM   #13
Grotbags
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I had an Ileostomy done four weeks ago, best thing I ever did, perhaps if you go through your fears and worries about the operation one by one, someone on here will be able to reassure you a bit
I know I had lots of concerns, I'd never even had my tonsils out, so major surgery was quite daunting, but all that stuff I was scared off, turned out to be unfounded and my imagination working overtime.
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01-08-2015, 05:09 AM   #14
Jimena
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I like stoma, i mean i am very cool with colostomy but i know it's little different with ileostomy. I am terrified that i woke up with flush stoma. That is my biggest fear.

Glad to hear that everything went well for you! It is def easier to deal with life with ostomy!
01-08-2015, 05:19 AM   #15
Grotbags
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I don't know the in's and out's of surgery, but is it likely they would give you a flush stoma ?, what has your surgeon said about it ?.
01-08-2015, 06:42 AM   #16
Jimena
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My last two colostomys has been flush and making me miserable so that's why i am scared. They usualky are abke to make ileostonys nore spoyty than colostomies. I did say to ny surgeon that they are no allowed to wake me up if ny stoma is under 3cm long, lol
01-08-2015, 07:57 AM   #17
Grotbags
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I'll be keeping everything crossed for you
06-29-2015, 12:26 PM   #18
Jimena
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Hi!

Six months since my last surgery. My ileostomy turn a our quite flush but I am fine with it, no leaks or that kind of propels sadly I got pyoderma again after surgery and had to deal with that. It isn't quite gone yet. Still using protopicia cream topically.

I had to stop humira 2 months ago because I got weird neurological symptoms. No I think I have flare... I have pains around my stoma and when it's active I feel pressure and pain. I am afraid.
07-30-2015, 10:59 AM   #19
fuzzy butterfly
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Hi jemina please don't be afraid, it'd probably be nothing too bad. I used to feel sharp stabby pains here n there, and the pressure is most likely from the stoma pushing output through, mine also felt kind of achey some times. Contact your Stoma nurse and I'm sure she/he will be able to help. Please take all advice here as advice only and always check with health care professionals. Best wishes..
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