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Enterocutaneous (abdominal) fistula - what is your experience?

How did you fix your enterocutaneous fistula?

  • It healed on its own

    Votes: 0 0.0%
  • Biologics (remicade/humira)

    Votes: 1 8.3%
  • Surgery

    Votes: 7 58.3%
  • Other - please state

    Votes: 4 33.3%

  • Total voters
    12
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
 

DustyKat

Super Moderator
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! :goodluck:

Dusty. xxx
 
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?
 

PsychoJane

Moderator
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.
 
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?
 
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.
 

PsychoJane

Moderator
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
 
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!
 
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
 
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.
 
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!


Sent from my iPhone using Tapatalk
 
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
 
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
 
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!


Sent from my iPhone using Tapatalk
 
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.
 
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!


Sent from my iPhone using Tapatalk
 
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 .
 
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.
 
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?
 
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.
 
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.
 
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?
 
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
 
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!
 
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!
 
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?
 
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!
 
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
 
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
Before I started infliximab I have always had stomach cramps, sometimes bearable, sometimes very unpleasant. Even when I wasn't having cramps, I always felt 'aware' of my bowels, not really sure how else to word it, they always just felt a bit iffy even if i wasn't getting cramps.

Since I started infliximab I have not had a single cramp, and my appetite has been very good. My BMs have been relatively healthy looking and I only go once a day (but I never had a problem with multiple BMs anyway) I still get pain at the location of the fistula and it is hard to pin point whether that is from the tract of the fistula, the part of the bowel the fistula is connected to or both.

So to answer your question, yes. Besides the fact that the fistula is still very much active, I feel the infilixmab/azathioprine combo has helped me a lot. I wonder if my consultant will allow me to return to inflix after I have the operation?
 
Interesting--have you gained weight? If so how much? Have you tried to cut grains?

I guess I am in a similar boat. Sometime I feel pain in the area where the fistula occurred. Until i saw your response in this thread, it hadn't dawned on me that there could still be an active abdominal fistula with only very minimal pain from time to time.

Edit: Ditto on your description of cramps prior to biologics.
 
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
Does that require 3 months in the hospital? :(
 
No, not at all!

PICC insertion you can go home after, or sometime they keep you there for a day or 3 to monitor you. Afterwards, a home nurse comes by and tells you how to put the TPN in each night. Its actually easy, but it is a pain in the ass to hook into something each night and have a PICC line in your arm altogether. You can walk around with the TPN back while it is infusing, and when you're not hooked up, you do everything as normal minus really physical activities.
 
So do you think a person would be able to do it only at night and then work during the day. My husband must work. I realize you are not a Dr. but just wondering if you know more about it like if that's possible in your opinion. Thank you SO much.
 
Dejabu, I asked for an Epidural aswell as the morphine pump no pain after surgery the surgeon removed the whole tract of fistula's and the laid a strip of fat from somewhere else of my insides along that area ( there is a medical term for this but don't know what its called) 14 months on no more fistula's x
 
Dejabu, I asked for an Epidural aswell as the morphine pump no pain after surgery the surgeon removed the whole tract of fistula's and the laid a strip of fat from somewhere else of my insides along that area ( there is a medical term for this but don't know what its called) 14 months on no more fistula's x
How does that work? Did they give the epidural to you before you woke up? I heard getting an epidural itself hurts. I didn't know you can get general anesthetic and an epidural at the same time.

I just had a pre-assessment for the surgery. I am booked in to have the operation on Friday the 14th of March (just 9 days away!). I was expecting to have to wait at least a month or two more, so I am happy it is happening so quickly. They need to find out if I have to stop my medication (azathioprine) before I have the operation, and if it is necessary they may need to delay it a bit longer.
 
Hello,

I am having surgery tomorrow morning. I have to get to the hospital at 7am, it is safe to say I am bricking it. The advice sheet said that I can eat up till 12 oclock the night before? Is that accurate? Won't there be food going around my bowels when they do the resection?
 
yes but it passes through small intestine right away so i think you are more than fine and i think it pertains more to tests they may run. not sure the food is completely obstructive and an issue regardless. food stays travels large bowl for 48 hrs or so.
 
Hello guys. I had the operation yesterday, all went well. I was given an epidural and I basically had no pain when I woke up. The epidural itself probably hurt more than the post op pain which is suprising given the size of the incision.

I havent spoken to one of the doctors yet to get a debrief on the surgery. However the nurses are trying to make me eat. I haven't even sat up out of bed yet, all though I did just pass a small amount of gas which I guess is a good sign. I have a bowl of corn flakes sitting next to me but i'm not going to touch them until I see one of the doctors.

What do you guys think? My surgery was only 17 hours ago and i've only been drinking water. Is it ok to eat a bowl of cereal so soon after?
 
Dear Dejabu,
I'm so glad you are finished with your surgery and are doing well :) Did you have a colon resection or just a removal of fistula, or? Thank you and bless you ...
 
I had some of my colon and the last part of my small bowel removed, and the fistula removed. Where the fistula was they need to pack it to allow it to heal properly as apparently it is an open wound (I haven't been brave enough to look at it). Is this what happened in your case AbsentMinded? They repacked it once already but i'm still under the effects of the epidural so didn't feel it. I heard it is very painful :(

Last night I spent most of the night vomiting as I was feeling very nauseated. Today has been better, I have managed to eat a bit of rice pudding, corn flakes and cheese and crackers. Tomorrow they will be taking the epidural out, I haven't had a bowel movement yet but I have passed wind which I was told is good sign. I don't really know what to expect tomorrow pain wise once the epidural has worn off. I will keep this thread updated
 
Hi, I'm so glad it all went well! Hoping you're now on the road to recovery!

I'm a bit back to front I'm afraid, I had my Stoma wound packed as it opened up after surgery, it then turned into my fistula. When I had my recent surgery to remove said fistula, it was already closed up so didn't need either packing or stitching. My fistula had a habit of healing up then bursting, it healed for three months at the longest then randomly swelled up and burst one day.

Wound packing is ok, I don't remember it being painful, just very very weird! I could feel pressure and something moving around but nothing too bad. I'm a bit weird, I love those kinds of things and find them fascinating. I used to take a photo each time it was unpacked so that I could chart my progress......
 
Today some clear red looking fluid began to leak from where the packed area is, so much so that it leaked beyond the dressing. I have been told that this is called serous fluid and is quite normal for wounds to produce it. So now I am no longer having it packed but instead back to wearing stoma bags over the open wound until it stops producing in such volume.

I am concerned about this. It ok to have an open wound and not pack it? I thought that the idea of packing wounds was to allow it to heal from the inside out, to help avoid abscesses?

Otherwise I am feeling better by the day. I had my bowels open today for the first time and was also discharged home.
 
... Hey there. So what was the end result? I'm curious as I have a fistula that I've tried everything on and the last thing I want to do is have surgery again. Hell, the last thing the doctors want to do is perform surgery on me again... :)
 
Mine drains and dries up and closes then erupts spectacularly. Waiting on an mre scan to see if it's worth trying a biologic, otherwise it's under the knife again. Something has to be done as I'm on constant antibiotics to try and prevent it from causing psoas abscesses.
 
I had my fistula surgically removed in January. It had healed up (yet again) when I went for surgery, but my surgeon and I decided to go ahead, as there was a very strong chance that it would burst again and continue to cause me problems.
I haven't had any problems since my operation and am so glad I decided to have it done.
 
Hello guys,

Sorry about the late reply. Since my surgery I have been very well. I have some pretty unsightly scars but not having to deal with the fistula anymore has completely changed my life. I was so depressed before I had the surgery but now I feel like i've been given a second chance. I have started a new job recently and will be returning to university to finish my degree in January.

I am 100% happy that I had the surgery. I wish all of you the best in resolving this.
 
My scars are pretty unsightly too. My old Stoma/fistula site is a big dent on my stomach which makes it look like I have an extra tummy button, plus I have my big 20cm laparotomy scar.
I have been really embarrassed by my scars, but I went away recently with some friends that I haven't seen for years and wore a bikini around the pool and it felt great! Everyone was lovely about my scars and were more interested than freaked out by them :)
 
I've had it since 2009 and is still open. It has gotten very small a couple times and even had no output for 3 days last Dec. It's still there and seems to be slowly improving. I'd love to see it closed.
 
I've had it since 2009 and is still open. It has gotten very small a couple times and even had no output for 3 days last Dec. It's still there and seems to be slowly improving. I'd love to see it closed.
 
I've had it since 2009 and is still open. It has gotten very small a couple times and even had no output for 3 days last Dec. It's still there and seems to be slowly improving. I'd love to see it closed.
Have you considered surgery or is it not an option? I had surgey to fix mine 16 months ago and I have been going strong since. I also have a lot of unsightly scars, identical to how Absentminded describes which I have gotten used to - in time they will fade to the colour of my skin and be much less noticable (i hope).

Overall I am very happy I had the operation as even one of the most powerful combinations of drugs (Azathioprine and Infliximab) had no effect on my fistula - I only wish I had it sooner.
 
hey guys--though I'd update here too. Remicade is still going strong for me (fingers crossed)..usually always flare free :). Glad some of you guys are doing well.

jayann--what medication have you tried?
 
Hello guys,

Sorry about the late reply. Since my surgery I have been very well. I have some pretty unsightly scars but not having to deal with the fistula anymore has completely changed my life. I was so depressed before I had the surgery but now I feel like i've been given a second chance. I have started a new job recently and will be returning to university to finish my degree in January.

I am 100% happy that I had the surgery. I wish all of you the best in resolving this.
I'm still learning how to reply on this forum. I'm hoping this will actually reply to Dejabu.

Thanks for your reply. Glad you are well and happy with your surgery. Where was your fistula on your abdomen? Did they need to remove part of your colon in the process? If so, how much did they have to remove. I'm already missing my descending colon, so do not want to give up more than maybe an inch.

jayann
 
I had my fistula surgically removed in January. It had healed up (yet again) when I went for surgery, but my surgeon and I decided to go ahead, as there was a very strong chance that it would burst again and continue to cause me problems.
I haven't had any problems since my operation and am so glad I decided to have it done.
Hi Absentminded,

Thank you for replying. Where on your abdomen was your fistula? Did the surgeon remove any of your colon? If so, how much? I already lost my descending colon and want to keep as much as I can of what's left.

jayann
 
hey guys--though I'd update here too. Remicade is still going strong for me (fingers crossed)..usually always flare free :). Glad some of you guys are doing well.

jayann--what medication have you tried?
Hi,

Did Remicade close it for you?

I had Remidade for a few months about 10 years ago before my then doctor moved away. I didn't have a fistula then.

I had Cimzia (another biologic) for two years after I had the fistula. It didn't affect it. I also had a lot of respiratory problems and flu when I was on it. After that I really don't want to go on another biologic.

I had a flare last summer. Going to the bathroom was extremely painful, so I didn't eat much and lost a lot of weight. I need to loose weight, so not a problem for me. That's not a good way to loose weight, especially if you loose muscle mass. I went on Prednisone and an anti-biotic to end the flare. I think the antibiotic helped with the fistula, as I think I also had an infection in it and as soon as I stared the antibiotic, out put went down and it got smaller.

I'm currently on probiotics- VSL#3 and S. boulardi. I started them in Sept. It is now July (10 months later) and I haven't had any Crohn's symptoms. I'd like to think that my micrbiota are being restored to a more normal balance and therefore no symptoms. Time will tell.

jayann
 
Mine drains and dries up and closes then erupts spectacularly. Waiting on an mre scan to see if it's worth trying a biologic, otherwise it's under the knife again. Something has to be done as I'm on constant antibiotics to try and prevent it from causing psoas abscesses.
Bigtruck.

What was the outcome of your MRE? Did you start a biologic, or did you have surgery?

I hope whichever it was you are well and happy and rid of the thing

jayann
 
Ciproflxacin and metronidazole have kept it closed, possibly trying vedolizumab sometime in the future.
Hi Bigtruck,

Thanks for your reply. I've taken both of those together several times. I think I've developed a resistance to them and I'm not sure if Cipro caused my tendon problems.

Last year I was having a nasty flare and a LOT of output from my fistula. Doc put me on Prednisone and Alinia(I thought it was an antibiotic. I just looked it up because I wasn't sure I remembered the name correctly. It is a for protozoa.

Anyway it did have an effect. Fistula started outputting less and got smaller. Last Dec it closed for 3 days, but popped open.

I found someone on a board a few minutes who had been given it specifically to close a fistula. They didn't state the outcome. I replied and will see what I find out.

jayann
 
I experience leg swelling possible due to tendons if I stay on ciproflxacin too long.
Interesting. I had pain in the Achilles tendon, so am afraid to take it anymore. I tore the meniscus in my knee and the last thing I needed is to tear the Achilles tendon.

Good luck.

I'm currently taking VSL#3 and s. boulardi twice a day. I've been symptom free for 10 months. Hope it continues. I do feel that getting a healthy microbiota is important for colon health.

jayann
 
I'm still learning how to reply on this forum. I'm hoping this will actually reply to Dejabu.

Thanks for your reply. Glad you are well and happy with your surgery. Where was your fistula on your abdomen? Did they need to remove part of your colon in the process? If so, how much did they have to remove. I'm already missing my descending colon, so do not want to give up more than maybe an inch.

jayann
Hello Jayann.

For me, my fistula originated from the end of my small bowel (ileum) and it surfaced on the very lower right hand side of my abdomen - in line with my waistline. As far as I know the surgeons removed the very last bit of my small bowel and a bit of my colon (cecum). In regards to the actual length of bowel in total - when I asked the surgeon he just held up two fingers and said 'about this much' - which was somewhere between 5 and 10 inches. I believe because the inflammation and scarring in side was so bad it was difficult to tell exactly the length but it was within that region.

Hope this helps.
 
Hello Jayann.

For me, my fistula originated from the end of my small bowel (ileum) and it surfaced on the very lower right hand side of my abdomen - in line with my waistline. As far as I know the surgeons removed the very last bit of my small bowel and a bit of my colon (cecum). In regards to the actual length of bowel in total - when I asked the surgeon he just held up two fingers and said 'about this much' - which was somewhere between 5 and 10 inches. I believe because the inflammation and scarring in side was so bad it was difficult to tell exactly the length but it was within that region.

Hope this helps.
Dejabu,

Thanks. I'm already missing my descending colon. I've been told that because of the way the blood supply to the colon works they they might need to remove about a third of my colon, the transverse colon. That wouldn't leave me with much. From research I've done, I've learned that about 70-80% of our immune system is in the colon and that good bacteria manufacture vitamin K, B12 and I don't recall what else. I'm not willing to throw away any more of it. If I could get a guarantee of one or two inches, I might go for surgery. So, for now, I'm stuck with this thing. I have no pain, but it is not a pleasant thing to deal with. Thanks for sharing your info.

jayann
 
Hey all, I have had fistula going from intestine to intestine, as well as perianal fistulas. The perianal ones drained freely without needing seton, then once I was taken off biologics while being treated for CDiff, they all closed up and healed. Now I'm back on Cimzia and fistulas are back. I have one perianal that has opened and drained a very small amount then sealed over again. And now I have a sore on my hip bone that started like a bug bite, ER said it was "Folliculitis", and gave me bactroban to put on it. However it has gotten more red, more tender, and swollen with a lump under the skin. I'm worried it may be a enterocutaneous fistula. It's in my lower left abdomen near my hip bone and close to where the drain from a previous surgery was. I can't get in to see a GI for a few weeks yet since my last one left practice. Any advice or thoughts appreciated.
 
Hey all, I have had fistula going from intestine to intestine, as well as perianal fistulas. The perianal ones drained freely without needing seton, then once I was taken off biologics while being treated for CDiff, they all closed up and healed. Now I'm back on Cimzia and fistulas are back. I have one perianal that has opened and drained a very small amount then sealed over again. And now I have a sore on my hip bone that started like a bug bite, ER said it was "Folliculitis", and gave me bactroban to put on it. However it has gotten more red, more tender, and swollen with a lump under the skin. I'm worried it may be a enterocutaneous fistula. It's in my lower left abdomen near my hip bone and close to where the drain from a previous surgery was. I can't get in to see a GI for a few weeks yet since my last one left practice. Any advice or thoughts appreciated.
I would insist that a doc see me in a matter of a day or two. If they put you off, and your original doc left, maybe try a new doc. You should be seen in a timely manner as far as I'm concerened. If you can't SEE a doc, maybe a phone call. But don't be put off.
I can't comment on what is going on in your abdomen. My fistula started very small, I thought I had a small boil. One doc put a single stitch in it to close it. That didn't last 24 hours. I've had this thing where my belly button used to be since 2009. It is a real annoyance.
I was on Cimzia for two years. I coughed almost the whole time. I guess my Crohn's symptoms were in control. I didn't like the idea that my immune system was compromised. I got the flu several times. The last straw was when I went for colonoscopy and my lungs were so full the anesthesiologist wouldn't put me under. They did two nebulizer treatments to try to clear my lungs, but didn't work. So after colonoscopy prep, which is even worse with a fistula, and nebuluzer treatments, I was sent home after 4 hours. What a bummer. I quit Cimzia then which didn't please my doc. I won't do another biologic, unless I'm desparate.

I think that maybe my fistula doesn't close is because there is infection in the area. I've taken antibiotics. Last time it really helped and the thing was almost completely closed (3 1/2 days). Then it reopened and had been more productive than I like. I am trying to avoid antibiotics and build a healthy microbiome, as I think that is the basis of the problem. Have ordered Clostridium Burtyricum (sp) from Amazon. It is supposed to produce Butyrate which nourishes the colonic cells. I'm hoping it will work. Currently I'm on VSL#3 DS and S. boulardi and things are going well.

BTW. When you take anitbiotics for C Diff, it wipes out good and bad bacterial. I usually take probiotics two hours before or after antibiotics, to help maintain some good bacteria. Antibiotics will kill probiotics, but probiotics don't bother the antibiotics. I do think medical science will figure this out soon, and discover what bacteria we need and how to restore them. So much exciting research is going on now.

Wish I could be more help to you. I'm sorry for the windy reply, but it will give you an idea of what I'm doing. Don't know how that will relate to you.
Glean form it what is helpful to you. Good Luck
 
I appreciate it. I like windy responses! Knowledge is power :) I took florastor (s. boulardi) that I too got from Amazon and I think that's actually what finally helped me kick the C Diff. infection.
This lump that was looking like a bug bite now looks like a boil. I have a propensity for self surgery and poking and picking so I really want to stick a pin in it to see what it drains. I know most people cringe and want to puke at that, but it's something my CRS loved about me Lol
My GI moved me up to 3 weeks out. The soonest I can get in for new patient with another Dr is Oct. (still calling around) and the ER near me... Ignorant. Kept referring to my Crohns as RA. Did you even READ my chart?! They also wouldn't let me see my own lab results. That's the kind of Podunk hospitals I have near me now.
 
I appreciate it. I like windy responses! Knowledge is power :) I took florastor (s. boulardi) that I too got from Amazon and I think that's actually what finally helped me kick the C Diff. infection.
This lump that was looking like a bug bite now looks like a boil. I have a propensity for self surgery and poking and picking so I really want to stick a pin in it to see what it drains. I know most people cringe and want to puke at that, but it's something my CRS loved about me Lol
My GI moved me up to 3 weeks out. The soonest I can get in for new patient with another Dr is Oct. (still calling around) and the ER near me... Ignorant. Kept referring to my Crohns as RA. Did you even READ my chart?! They also wouldn't let me see my own lab results. That's the kind of Podunk hospitals I have near me now.
The first S. boulardi I took was Florastor. Then I found the same organism carried by Jarrow for much less. There may be other sources, but I've been using the Jarrow for some time. Florastor is ridiculously expensive as is VSL#3.I've had such good luck with VSL#3 that I'm afraid to change horses. There are several products out there that have most of the same bacteria, but I'm a bit nervous about changing. Are you far from Cleveland Clinic? They are supposed to be very good.
 
Hi Absentminded,



Thank you for replying. Where on your abdomen was your fistula? Did the surgeon remove any of your colon? If so, how much? I already lost my descending colon and want to keep as much as I can of what's left.



jayann

Hi Jayann, I'm so sorry that I haven't replied sooner. My fistula was just below and to the right of my tummy button. I now have a 4 x 2 cm dent/scar where it was and is now healed up.
My surgeon did remove a bit of bowel during my surgery, I think 15 cm of small and large bowel - I've only had about 50 cm removed altogether over my 3 surgeries.
 
Hi I have a fistula that drains next to my belly button. It was an abscess also but that has been drained. Now the fistula has slowed down a lot at first there was constant draining. And had pices of food I ate like corn and peas and green beans come out of the hole. It's been draining for 2 weeks now. And just today there was a pice of corn that came out. I haven't ate corn in over 2 weeks. How is this possible? And is it possible that the fistula has closed and the corn has been stuck in the abscess? Just wondering if anyone has had anything like this? And did it heal? I'm in two antibiotics and prednisone and going to b starting humira once infection is gone
 
Hi I have a fistula that drains next to my belly button. It was an abscess also but that has been drained. Now the fistula has slowed down a lot at first there was constant draining. And had pices of food I ate like corn and peas and green beans come out of the hole. It's been draining for 2 weeks now. And just today there was a pice of corn that came out. I haven't ate corn in over 2 weeks. How is this possible? And is it possible that the fistula has closed and the corn has been stuck in the abscess? Just wondering if anyone has had anything like this? And did it heal? I'm in two antibiotics and prednisone and going to b starting humira once infection is gone
Hi Matt,

I can't imagine why the delay in seeing corn. Maybe it was lodged somewhere along the line.

My fistula is where my belly button used to be. I also have an abscess draining out of it. I've taken 4 different round of antibiotics since June to fight infection. Finally had a CTScan a couple weeks ago and showed the abscess. How did you get your abscess drained? What kind of doctor did it?
My fistula seems to get smaller after taking antibiotics and enlarges when the infection returns. I think if I could get rid of infection entirely that MAYBE the fistula would close. Or I will try to get a Porcine plug. I am so ready to be rid of this thing.

Jayann
 
Hi Matt,

I can't imagine why the delay in seeing corn. Maybe it was lodged somewhere along the line.

My fistula is where my belly button used to be. I also have an abscess draining out of it. I've taken 4 different round of antibiotics since June to fight infection. Finally had a CTScan a couple weeks ago and showed the abscess. How did you get your abscess drained? What kind of doctor did it?
My fistula seems to get smaller after taking antibiotics and enlarges when the infection returns. I think if I could get rid of infection entirely that MAYBE the fistula would close. Or I will try to get a Porcine plug. I am so ready to be rid of this thing.

Jayann
Hey Jayann

They drained my abscess using CT guided and put a tube in so it would drain into a bag. It's been in for 4 weeks and has almost stopped draining. But the other two spots where they used needles to remove the infection have opened up. That's where the pices of food keep coming from. It's the craziest thing cause I have no other crohns symptoms and I haven't ate the kind of food that is coming out in three weeks. And nothing I have ate has came out. A intervetional radiologist did the draining and at the time they said they could not see a fistula and I have had one tube check since and explained to IR and my GI what was going on and they said they can not see where it is communicating. I'm going for and ultra sound and blood work. I'm not sure if maybe the fistula has healed and all this stuff has been stuck inside somewhere and started into an abscess or what is going on. And thanks for the reply and sorry if rambled on a bit too much lol

Matt
 
To the above ^

My abscess was also drained using a tube and drill that they stuck in my stomach with the fluids collecting in a bag. The drain remained in for about 6 weeks, after they removed it however the following day fecal matter began coming out of the hole where the tube was in.

I later went for another procedure whereby they poured a small amount of fluid in to the hole from the outside and then did some type of CT scan to show where the fluid would run to - effectively determining its path. It was discovered that when they put the special fluid in to the hole that was discharging the yuckiness that they saw it ran in to my small bowel. That is how I was 'officially' diagnosed with the fistula.
 
I had 2 fistulas from the small intestine. 1 was from the small intestine to the bladder, and the other was from the small intestine to the colon. I had been walking arounf with them for about 4 years.... awesome. Both required surgical removal, and cost me a portion of my bladder and colon. Also lost 2ft of small intestine at the ileum, beyond repair. Also have 3 perianal fistula, but i know this thread is not about those. Just feel like my disease is overwhelming my body. Anyway, after surgery i had a small tube with a small clear grenade like plastic container to catch fluid or crap from draining. All i know about the abscess is that normally your bladder is a round shaped organ that loke a balloon, can grow and shrink, well mine was heart shaped almost split into 2 from the abscess pressing down on the middle. Caused me excrutiating pain to urinate and i also would at times only urinate a dmall amount with the feeling like i had to urinate alot more but something was keeping me from going, and eventually the urge to go would subside. Oohhhhhh man, talk about excrutiating pain, mixed with having issues with bowel movements, i spent most nights on the throne. Sometimes 1hr at a time on the throne. Sometimes fell asleep on the throne. Hate my disease. Thats my experience.
 
I had gotten amazing releif after surgery, but that was short lived. About 6 wks after surgery, i went from having less pain and weaning off the opiates and having a ton of energy, to a complete 180, pain re resuming following eating especially, extremely painful bm's, and fistulas becoming active again. I started back up on remicade, but i just felt worse. Saw my gi today, and she wants to try humira, and is finally believing me i think that pain meds just seem to really help my overall condition. Not to mention i am coming down with severe arthritus now... it freakin wakes me up in the middle of the night its so bad at times. Im just so tired of this disease, and it uust keeps coming and coming and coming....
 
I had gotten amazing releif after surgery, but that was short lived. About 6 wks after surgery, i went from having less pain and weaning off the opiates and having a ton of energy, to a complete 180, pain re resuming following eating especially, extremely painful bm's, and fistulas becoming active again. I started back up on remicade, but i just felt worse. Saw my gi today, and she wants to try humira, and is finally believing me i think that pain meds just seem to really help my overall condition. Not to mention i am coming down with severe arthritus now... it freakin wakes me up in the middle of the night its so bad at times. Im just so tired of this disease, and it uust keeps coming and coming and coming....
Maybe Humira will give you some relief. It was originally for RA so maybe it will help there too. Hang in there. This is a hideous disease, but it has to get better.
My fistula is in by belly. Ugly thing to deal with, but not painful. I have an abscess draining into it. I'm hoping to go up to Mayo to an interventional radiologist and have it drained. I haven't tried to make an appointment yet.
Too much going on with the holidays coming.
 
I had 2 fistulas in my belly. 1 from my small intestine to my bladder which had an abscess at the bladder, and 1 from my small intestine to my colon. They were both causing me considerable amount of pain although i thought it was just my actual crohn's. Had them probably for like 4 or 5 yrs, was lucky i didnt have a rupture on the abscess. Was like a walking time bomb. Super lucky.
 
Hey guys, just read this whole thread as I am experiencing something similar. I had surgery 7 weeks ago to fix a parastomal and incisional hernia (plus they cut away a chunk of fat and skin that had my old Stoma on it and they re placed the Stoma) I've had several complications like my Stoma dehiscing fully and retracting, and also my main insision wound has a couple of dehisched Areas too. I also had a drain in for about 2.5 weeks after surgery - and it's been very slow to heal. Everything has finally started healing up everywhere else but tonight when pooping I noticed pain coming from the drain site so I took off the dressing and low and behold yay. There is poop coming out of it. I am guessing that the drain hole burrowed in to my bowel somehow. I have been on antibiotics (cipro and flagl) for about 20 days then I finished last week and have just been on augmentin since. I've been off humira and azathioprine since last September also so am on no crohns meds.

Anyway I would love some advice on what to do - I'm going to gp tomorrow and booking apt to see my GI. I'm just hoping like hell I don't need more survey cause this surgery was the worst time of my life it was horrid and I'm not sure I can handle it again so soon after that.

What are the surgery options though? Can they do setons and plugs for fistulas that come out of your tummy?

Thanks
Charlotte
 
Hi Lotte,

I'm sorry you are going through so much. I'm afraid the surgeries I've had haven't gone smoothly either. Always some unanticipated unpleasant surprise.

I've had an enterocutaneous fistula since 2009. I despise it. The amount of output varies from a tiny amount to several tablespoons a day. I would so love to be rid of it.

That said, I've not heard of a seton for enterocutaneous fistula, but have heard of porcine plug and fibrin glue as treatments. They don't have a high success rate. Porcine plug is only about 25%. I figure that's 25 times better than doing nothing. I was going to go to Mayo Clinic to have it done a year or so a go when the hole was less than 1/4" in diameter. However, infection set in and it became much larger and I wasn't able to get it done.

Since then I've been on 5 or so rounds of antibiotics to get rid of infection. When I take the antibiotics it does start to get smaller, so I think maybe infection is a reason it has never closed. I was on four rounds of different antibiotics since June of this year. However, cultures kept showing different organisms. FINALLY my GI did a CTScan which showed a 7cm abscess which is draining out of the fistulas as well as poop of course. Anyway, I'm in the process of scheduling an appointment with the Interventional Radiologhist that was going to do the porcine plug. I'm hoping he can drain the abscess and get rid of any infection(pipe dream?) Then maybe it will close by itself, or a plug might work. It would be so good not to have to deal with this thing.

While I have infection they won't do any biologics, which is fine with me. I took Cimzia two years and coughed the whole time, so I'm not anxious to start another.

I started the SCD diet in August. So far, I can't give testimony one way or the other. I think it is working, but I'll know more in a few months when I get a colonoscopy. I took a round of Prednisone at the same time I started the diet, so I think the Pred brought my flare under control, so it's hard to know what effect the diet has had.

I'm anxious to go to Mayo and hopefully make some progress.

I hope you don't need to do another surgery. Let us know how things go for you. Hang in there!

jayann
 
Hey Jayann

They drained my abscess using CT guided and put a tube in so it would drain into a bag. It's been in for 4 weeks and has almost stopped draining. But the other two spots where they used needles to remove the infection have opened up. That's where the pices of food keep coming from. It's the craziest thing cause I have no other crohns symptoms and I haven't ate the kind of food that is coming out in three weeks. And nothing I have ate has came out. A intervetional radiologist did the draining and at the time they said they could not see a fistula and I have had one tube check since and explained to IR and my GI what was going on and they said they can not see where it is communicating. I'm going for and ultra sound and blood work. I'm not sure if maybe the fistula has healed and all this stuff has been stuck inside somewhere and started into an abscess or what is going on. And thanks for the reply and sorry if rambled on a bit too much lol


Sorry I didn't respond to your post. Anyway, Hope things are going well. Have you had any more corn where it shouldn't be? How did your ultrasound and bloodwork turn out?

I'm in the process of setting up an appointment with an interventional radiologist to get the abscess drained. Hopefully it will make it possible to close the fistula. I HOPE!!!!
jayann
 
Have you considered surgery or is it not an option? I had surgey to fix mine 16 months ago and I have been going strong since. I also have a lot of unsightly scars, identical to how Absentminded describes which I have gotten used to - in time they will fade to the colour of my skin and be much less noticable (i hope).

Overall I am very happy I had the operation as even one of the most powerful combinations of drugs (Azathioprine and Infliximab) had no effect on my fistula - I only wish I had it sooner.
Dejabu,

I just realized I never responded. Where was your fistula? Did you have to have any of your colon removed during the surgery? I've not wanted to have surgery, but if it would really work, I'd try it. I've heard you have 50% chance of it coming back. I'm in process of getting an appointment with an interventional radiologist to have an abscess drained that drains from the fistula. I hope I can do a porcine plug after that is complete. If not, I'll seriously consider surgery. Your posts have given me optimism for surgery.
Thanks.
jayann
 
In 2013 I had surgery for 5 of those damn fistula s which had come through my old scar on my stomach had to wear 5 paediatric bags was horrendous!
I now have a ileostomy which I'm grateful for I still have a retrovaginal fistula to cope with but isn't as bad. I had tried all the biologics but they all failed either because of reaction or just didn't work.
 
My husband has been suffering from an enterocutaneous fistula (intestine) for the past four months. Very long story short, he cannot undergo surgery for it. It was not healing. They tried clipping it to no avail. Drs were considering "gluing" it (another term is "plugging" it) but didn't have much experience with either procedure. In the meantime, we purchased a mat that emits electromagnetic waves - purpose being to promote better blood circulation. (Blood does not circulate well in injured areas. Blood is necessary bc it provides the injured area with necessary white and red blood cells.) After the first application he felt he had a little bit more energy. By the second day he had a hole form in the abdomen from which he started oozing pus- today's the 6 day he's still draining pus. But, once he started getting rid of the infection in his body his fistula's discharge started to decrease. Today he discharged 1 ounce in a 16 hour period- he was discharging up to 62 ounces in a day! We're waiting to see if the discharge stops completely in the next few days. We're sharing this information bc we're hoping to provide hope to others. We attribute this improvement to his use of the mat. It has been a life changer for us. I encourage all of you to look into this and hopefully you have a similar result. Get the best mat that emits the best electromagnetic currents to stimulate blood flow.
 
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