Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Enterocutaneous (abdominal) fistula - what is your experience?



View Poll Results: How did you fix your enterocutaneous fistula?
It healed on its own 0 0%
Biologics (remicade/humira) 1 9.09%
Surgery 7 63.64%
Other - please state 3 27.27%
Voters: 11. You may not vote on this poll

 
10-17-2013, 01:06 PM   #1
Dejabu
 
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Enterocutaneous (abdominal) fistula - what is your experience?

Hello. I created this topic as I would like to hear from others who have experienced this type of fistula. Most of the topics regarding fistuli seem to focus on rectal types and it seems that the type I currently have isn't that common.

I currently have a fistula outputting through a surgical wound on my waistline which was created to drain a large abscess thought to be caused by a ruptured appendix. Scans show that the fistula is connected to my ileum, with approx 7cm of my ileum being inflammed - I have consequently been diagnosed with Crohn's.

I should be starting infliximab (remicade) very soon, and I am hoping that this will heal my fistula. The amount that drains daily varies between 10-80ml so it is technically low output, so I am hoping this will give it a better chance of healing through treatment. If that fails, I believe a bowel resection will be necessary to heal it.

I would really like to hear other peoples experience with this type of fistula and what worked for you. I will also keep this post updated regarding my course of treatment to help others in the future.

Kind regards
10-17-2013, 03:01 PM   #2
DustyKat
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Hey Dejabu,

My kids have ileal Crohn's and have the complication of fistulas and abscesses but not enterocutaneous, theirs have remained intra abdominal.

My daughter was diagnosed on the operating table so surgery was the first and only option. My son developed his complications, fistula with psoas (muscle) abscess, very soon after diagnosis. Due to the abscess biologics were contraindicated and at the time (2010/11) all the docs he saw stated that fistulas that originate in the ileum are notoriously difficult to heal with medication unlike perianal fistulas that respond well to Remicade. So he ended up with surgery as well.

Now that is not to say that yours won't heal with Remicade so sending you loads of luck that that is indeed the case!

Dusty. xxx
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10-17-2013, 04:05 PM   #3
bigtruck
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I have a colo cutaneous fistula, it is in my right groin and connected to the last part of my sigmoid colon.
10-18-2013, 07:56 AM   #4
Dejabu
 
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Hello Dusky,

Thanks for sharing your experience. I was unaware that Remicade wasn't very effective for fistuli in the ileum, that concerns me I wonder why my doctor is starting me on it then. I don't want to build up antibodies to Remicade, have the surgery anyway, then have the Remicade be ineffective when I may need it later on down the road. How has your son been since the surgery? I need to face the very real possibility of having some of my small intestine (and probably a bit of colon) removed and things like short bowel syndrome worry me!

Hi BigTruck,

So it seems you have a similar type of one to me, so you probably share my frustration! What measures are you taking to fix it? Has your doctor prescribed a course of action?
10-18-2013, 09:22 AM   #5
PsychoJane
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I had several fistula that formed from my terminal ileum to the surface of my skin (but keep in mind I already had a stoma so it was close reach for the fistula). I had a lot of antibiotics to try to keep them behaving and that was what was bringing me the most relief (never a solution unfortunately). I started Humira in hope to heal them, as well as methotrexate at some point. Unfortunately, I was in the club of those who builds antibodies and It happened fast. The first few months on humira allowed the fistula to close but it only lasted about 8 month until new ones appeared and old one reopened...
On the long run I ended up to surgery (which was my first will but rarely the first option suggested by any GI due to complication and risks or multiple surgery on the long run).
I'm glad I went for the surgery as I've been very well since.
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10-18-2013, 10:11 AM   #6
Dejabu
 
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Hi PsychoJane,

Thanks for the response. So would it be correct to say that the biological treatment was working for closing the fistula, but it didn't last as you built antibodies towards it? Do you feel that if you hadn't developed the antibodies, the fistulas would have remained closed had you stayed on the treatment?
10-18-2013, 04:20 PM   #7
bigtruck
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Hi there, I'm currently on 6mp and prednisilone and have just started on a low dose of co amoxiclav daily. I also have a loop colostomy at the min although it has partialy closed so most of the waste goes via the rectum, but it keeps some pressure of the fistula to try and help it to heal.
10-18-2013, 05:28 PM   #8
PsychoJane
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The antibiotic helped for the pain and kept the fistula in a "decent" condition prior to the introduction of humira. Once on humira, within a few weeks the fistula closed and the skin grew over it letting me believe that my condition was to be fine from then on. I'm believing that the medication, on that aspect, achieve what it was suppose to. I believe they would possibly not have reopened if it were not from the fact of the antibodies, though, I've heard of people that kinda get "reactivation" of the fistula while they have "flares" while taking the medication. Now, does that mean they also have lost a part of the efficacy of the treatment due to antibodies... that I can't tell. :S
11-05-2013, 01:14 PM   #9
Dejabu
 
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Thank you for the response PsychoJane, I really appreciate it.

So I met with my consultant the other week and we discussed what the next steps were. I suggested having surgery instead of taking the Biologics, however he was reluctant to do so and his point was that you should always exhaust the non-surgical options before opting for surgery - as with any surgery there are risks.

The plan is to start Infliximab (Remicade) + Azathioprine (Imuran) at the same time. My GI feels that the combination of both of these drugs will give me the best chance of having my fistula close and he even said he would put 'good money' on it being successful. He also said that the Aza reduces the risk of developing antibiodies to the inflix. However he mentioned the increased risk of the fatal T-Cell Lymphoma, especially in young males (which I am). He said something like a 6/10,000 chance compared to 2/10,000 (the average person). Obviously this was a bit concerning but the risk is very minimal and the potential benefits far outweigh it.

So that is where I am now. I am hoping to get at least 2 infusions in before christmas, and with my fistula in full flow the treatment can't start soon enough!
11-29-2013, 01:14 PM   #10
i_eat_constantly
 
Join Date: Jun 2013
hi dejabu,

i have the same situation, fistula in small intestine by elium. however, i have an abscess so that must be treated. if the abscess goes down with antibiotics (through picc line, unfortunately), i will do remicade/imuran mix too in the hopes that it heals everything.

let me know how it goes
11-29-2013, 01:47 PM   #11
bigtruck
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I've just started a 3-4 month course of ciprofloxacin, and being considered for vedolizumab in the future.
12-04-2013, 08:20 AM   #12
Dejabu
 
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Thanks for the updates.

I will be going for my second infusion tomorrow. It has been nearly 2 weeks since my first infusion of Infliximab and I have also been taking the azathioprine alongside it. No adverse reactions so far and I have to say the general feeling of my stomach has been so much better since the infusion.

The fistula continues to drain and I still get burning/stinging pain from it. However I have only had the first dose and it would be best to evaluate whether or not it is effective after all 3 loading dose stages. It is just a waiting game now but it is very frustrating as I am supposed to be returning to university in January and I will not feel comfortable doing so unless this fistula is resolved.
01-10-2014, 02:00 PM   #13
Absentminded
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Hi Dejabu,

I'm sorry, I've only just seen your post, I've been MIA for a while.
I have had an enterocutaneous fistula for almost a year, going from my small bowel to my old Stoma site on my stomach. Mine appeared because I had a leak at my anastomosis site, when I had my Stoma reversed, and my body gave me a fistula.
Having dealt with it for a year, I use small Stoma bags over it, it has now become a real problem and I am having surgery to remove it on Monday. It has a habit of healing up (3 months was the longest period) and then bursting again, which has meant that I have been admitted to hospital a few times.

I'm sorry that you're having to deal with this too and I'll keep everything crossed that the infliximab had begun to do its job!


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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.
01-10-2014, 03:34 PM   #14
Dejabu
 
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Hello and thank you for the reply,

I have been on infliximab + aza for nearly 8 weeks and if has made no difference to my fistula. I am due to see my consultant in 10 days and if there is no improvement by then he said we will need to discuss surgery.

I will most likely need a temporary stoma which doesn't sound fun.

Good luck with your surgery
01-10-2014, 03:42 PM   #15
i_eat_constantly
 
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Dejabu,

Before you do that, maybe it is still possible to do TPN. I went on TPN (no food or water) and then took ivanz (since my fistula/abscess was abdominal) and just got the results back--the fistula/abscess are gone.

I am not sure if it is relevant in your case, but complete bowel rest could be very good. There are some trials out there that show 25/30 patients on 3 months of TPN avoided surgery.

Good luck
01-10-2014, 05:36 PM   #16
Absentminded
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Hi Dejabu,

I'm sorry that you haven't seen any change yet, Aza can take up to 12 weeks to start working and you may need a few more infliximab infusions before you see a change.
Fingers crossed you don't need surgery :-)

Stomas aren't as bad as everyone thinks, to be honest I kinda wish I'd kept mine. There's loads of info over on the Stoma sub forum, and a lot of positive stories!


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01-11-2014, 07:45 AM   #17
Dejabu
 
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Hi I-eat-constantly, to be honest I have never heard of that. I mentioned to my doc about going on a liquid enteral diet in order to give the last part of my small bowel rest (which is where the fistula/inflammation is) but he said he is not sure it would make a difference with the powerful meds I am on. However I will bring up TPN with him next time I see him.

To be honest I am not that concerned about the possibility of having a temp stoma. I've been wearing a stoma bag for the past 9 months to contain this fistula which probably isn't all that different - and hopefully the stoma won't cause me pain like the fistula does!

Absentminded,

Have you tried biologics to help heal your fistula? From the research I did on their effectiveness in healing enterocutaneous fistulas my first choice was to opt for surgery but my consultant was adamant that we try inflix before it resorted to that. Before I was allowed to start inflix I had to be treated for latent tuberculosis for 3 months as my tests came back positive, and in this time the fistula developed from small amounts of yellowish output to full on fecal matter.

This is all very frustrating for me. I should have finished university last year but now I have to miss another year while all of my friends get on with their lives. I will try to stay optimistic but its hard to see any light at the end of the tunnel. Especially as I am in England and suspect I will need to wait ages for the initial operation due to the NHS waiting times.
01-12-2014, 05:01 AM   #18
Absentminded
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I have been on infliximab and humira before and developed my first 7 fistulae (fistulas?) whilst on them. My Gastro and my surgeon decided that it probably wouldn't help this time, especially as the fistula isn't a Crohn's one, it is from post surgical complications. I'm ok with surgery, it doesn't bother me too much.

Ah so you're a dab hand at Stoma bags! You might even find a Stoma easier to deal with since it sticks out more than a fistula.
I'm not surprised you're frustrated and feel like you do. I'm exactly the same, I look at my friends getting on with their lives and I'm often stuck in hospital having more and more surgery. But these experiences make us stronger and the people that we are.
You might be surprised at the waiting time for surgery, I've only ever had to wait a couple of months on the NHS.
Good luck with it all!


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01-12-2014, 10:55 AM   #19
barmybev
 
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Hi, I had 4 of these awful fistula's started with one in 2008 then 4 more between then and 2012 tried Remicade but had a reaction on 2nd dose then went on to Humira which just gave me infections every month. Finally had them are surgically removed in Jan 2013 I ended up with a Ileosromy, but its far easier to deal with than the fistula's and I now have a better quality of life .
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Diagnosed with Crohns 34 yrs.'' ago aged 13 surgery in 93 right Hemicolectomy. had full remission till 2008 had another surgery in 2009 & had a temp stoma. 2010 had stoma reversed back. Then had 4enterocutaneous fistula's. tried Remi & Humira to no avail ended up having surgery again in Jan 13, 4, small bowel resections, gallbladder taken out, Fistulas all removed & given a permenant Ileostomy





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01-18-2014, 12:59 AM   #20
Panther P
 
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Hi all - just wanted to add my experience to the mix. I had a perforation at my terminal ileum about 10 months ago sending me to the ER. Doc cut out the CD-ravaged 18 inches and did an anastomoses. That sprung a leak so had an ileostomy for 3 months, then reversal. Then THAT sprung a leak. Doc put me on TPN and hoped for spontaneous healing. That didn't work and the drainage actually increased from about 20ml/day to 500 over Bout 2.5 months. Then we tried a healing agent called ACELL, which helped such that drainage went from 500 ml to 0 in about 6 weeks. Feeding tube was removed and normal eating began but within days the fistula started draining again. I'm not even upset, Im so exhausted and frustrated that I'm numb to this. But doc hopes some more treatment and it may fully heal.

So question (after that long story) - does any one have experience with a fistula healing and actually staying healed.
01-18-2014, 01:35 AM   #21
i_eat_constantly
 
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what did your diet consist of? My fistula/abscess healed but if I eat a cheeseburger I could flare and this thing could reopen.

To everyone, are you implementing diets in addition to your treatment?
01-18-2014, 09:21 AM   #22
Dejabu
 
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Hello I have not implemented any diet. I will discuss it with my consultant when I see him next week.

I have been getting weekly blood tests being on the aza + inflix combo. I just got a letter from my GP asking me to come in and discuss my most recent bloods results. What could this mean? Its Saturday and I have to wait till Monday to go in, I am really scared as I understand the potential side effects of this drug.
01-18-2014, 11:00 AM   #23
i_eat_constantly
 
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hey dejabu,

try to think of diet like this: it may not be a cure, but if foods are bothering you, it makes sense to be on a diet that does not create inflammation, or as much of it. even while medicated, you will reduce chances of efficacy of drug if you aren't eating the right things. try this: no sugar and no grains--a test to see how it helps. there are MANY diets that follow the no sugar/grain idea, check the forum or google, or I can scan in several of the diets an experienced crohn's Dr. recently provided me as part of my remicade/az treatment. its a tough lifestyle change but it should help.

as far as the letter, don't panic, this is normal. There may be issues with electrolytes and other elements the doctor wants to correct. i was called 100x for different things, sometime the news good, sometime bad. usually with blood tests the big things tehy are looking for are liver health, electrolyte levels and inflammation. the first two are possible things they could be calling about and there is always an answer, so do not worry. if the remicade (inflix) is bugging you, you'll switch to humira. If it is electrolytes, they will discuss how they can normalize your levels. if its something else, try not to worry.
01-20-2014, 10:34 AM   #24
Dejabu
 
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Thank you for the reassurance I eat constantly. The abnormality in my bloods turned to be something to do with my hemoglobin/iron deficiency which I knew I had already. All that panic for nothing!

I mentioned to my specialist via email about trying a liquid enteral diet as my understanding is that it can give the end of the small intestine a chance to rest but he said he doesn't think it will make much difference as i'm already on the most aggressive drug combination. To be fair I could imagine it being very frustrating to have to constantly be concerned about my fistula re-opening just because I ate something wrong - I think I would just prefer to have the surgery to perminantly resolve it.

Dear barmybev, if you don't mind me asking how come your ileostomy became permanent? My specialist thinks I may need one but says it will be temporary. To others that have had surgery for this - did you require an ileostomy? And was it temporary or permanent?
02-03-2014, 03:58 PM   #25
barmybev
 
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Hi, sorry to take so long getting back to you. I had a temp Ileo in 2009 to help with healing ended up having it for 15 months. Then had the other fistulas keep popping up. so the only way I could get a better quality of life was having the whole track of fistula's removed surgically as no meds I tried worked x
02-25-2014, 08:04 AM   #26
Dejabu
 
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Hello, I would like to update my situation.

It has been about 3 months since I began the Infliximab/Azathioprine combo and thus far it hasn't made a difference to the fistula.

I met with my surgeon today for the first time and he told me more about what the operation is going to entail. He said it couldn't be done laparoscopically, so I will have a 7 inch scar down the middle of my abdomen. He talked about all the risks involved, and said my chance of needing a temp stoma was less than 10%. He said it depends on how things look inside, which they won't know until they open me up.

A date for the surgery hasn't been set as of yet, but he said it should be within the next 1-2 months, but who knows with the NHS! At the moment I am feeling rather blasé about the whole situation, but i'm sure once i get a date for the operation, i will be shitting it!
02-25-2014, 12:05 PM   #27
Absentminded
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That's the same operation as I had 6 weeks ago to get rid of my Enterocutaneous fistula!
I found my recovery was pretty good from this surgery, I made sure I walked as much as possible.

I'm sorry the meds haven't helped you, it's a bit hit and miss I know. Hopefully the surgery will sort it out successfully.

You'll be fine, although it's totally normal to be shitting it!! If you've got any more questions just ask, I don't know if you've had surgery before, but there's plenty of people on here with loads of experience!


02-26-2014, 07:24 AM   #28
Dejabu
 
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Hello absentminded and thank you for the reply once again.

I'm very glad to hear your surgery went well. I had a couple of surgeries last year to drain an abscess, which is where the fistula formed to. But the scar from that is only a couple of inches. The surgeon said this surgery requires a big scar, was that the case for you? I know the pain meds will sort out whatever pain I have, but i'm just worried about the moment I wake up from the anesthetic. I remember my last surgery I woke up in a lot of pain, but that was soon relieved by morphine. I love morphine, hopefully they will give me a pump that I can administer myself.

How has your symptoms been since the surgery?
02-26-2014, 01:00 PM   #29
Absentminded
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It's no problem, here to help :-)

I have a 20 cm long vertical scar on my stomach. It doesn't really bother me, I was never going to be a bikini model or anything!! It'll fade in time, and I don't tend to wear midriff baring clothes!

I'll be totally honest, when I came round from my anesthetic I was in a fair amount of pain and felt pretty sick, the nurses and anesthetist got it under control pretty quickly though. I'm not sure how normal that is, I know that morphine in general makes me very sick, so that may have had something to do with it.

I would think that you would have a morphine pump (PCA - patient controlled analgesia), that's fairly standard for open surgery. I had oxycodone in mine this time, just because of the morphine = sickness thing! I've had morphine for my first two surgeries though and they're pretty effective.

My symptoms have been ok. Obviously the best thing is that the fistula is gone! :-D
My bms are still rather up and down, but that's too be expected. They've reduced a lot, I'm down to 1-4 times a day, which is fine.
I'm seeing my gastro in a couple of weeks to discuss medication.

At least if you've had a couple of surgeries you do know kind of what to expect. The only thing about having open abdo surgery is that for a while you won't be able to use your stomach muscles. It's a bit weird to begin with, but you do adapt quickly and learn to push yourself up and the best way to move. I'm now 6 weeks on and pretty much back to normal, I'm not doing crunches yet and anything like that, but my muscles have repaired themselves. I'm not really selling it very well am I? Sorry!


02-27-2014, 12:49 PM   #30
i_eat_constantly
 
Join Date: Jun 2013
dejabu,

just a quick q:

has inflix/other drug combo removed the pain for you? I.e, is it working in returning your digestive processes to normal save the fistula?

I am on the same regimen and have found i can eat anything and everything again (still be careful somewhat). With that said, I am not sure what's going in internally with fistula
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