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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Peristomal Abscess/fistula



10-05-2011, 11:14 AM   #1
Ignitus
 
Join Date: Jun 2011
Location: Ontario, Canada
Peristomal Abscess/fistula

Here goes an interesting tale with no ending in sight currently. Back in late May I started having a very bad flare up, now I have never been in remission but it got to the point 3-4 days a week I was basically bed ridden. The pains started to hurt with every bowel movement and lasted hours after with a feeling like something was twisting my stoma. After awhile the pain just never went away and I became constipated and though I had an obstruction. Went to the hospital in pain and they did a CT which showed bad inflammation thru my ascending and transverse colon.

After this and the worry expressed by the doctor I decided to do something I never have up until this point and I bite the bullet and started taking meds to try and control it before it got out of hand. This continued for 2 more months trying all kinds of combinations of medicin with very little results. My GI went on vacation early august 1st-24th and left me on a 30mg Pred taper and imuran. Before he left I had told him about the bad pains I had been having weekly and the sharp stabing pain above my stoma that came and went but were very intense for several seconds, he attributed it to the flare and said to stick to the course with the meds.

At the end of July I had a cramp that never went away, and above my stoma was so sore I broke into my reserved pain killers just to sleep thru the night. The pain was radiating into my back I was sore all over and decided on august 5th to go back to the ER. After performing a CT Scan I was informed that I had a abscess right above my stoma in a crecent shape and I would need a JP drain in for several weeks to help heal it. The op went smooth and I was released after 4 day in the hospital.

The day after I was released and was changing my ostomy flange I noticed a slight red area that was a little more buldgy than usual and hurt to the touch right beside my stoma. I monitored it for 3 days at which point it had grown to half the size of my stoma and had a white appearance with vains viable. It was also very painful now and although I was cutting the waffer to accommodate this it was not helping ease the pain. I decided to make my 3rd trip back to the ER and see what was up now.

The doctors in the ER said that it might be part of the other abscess that was not draining thru the tube and they ordered an ultrasound to get an idea of what it was. The ultrasound could not get close enough to my stoma to see anything and because I had just had a ct they would not do another an they sent me home and said "if it obstructs your bowel movements then come back and will look into it further". I left the hospital very angry feeling like nobody had a clue what to do and that I would just have to deal with this alone.

The pain just kept intensifying after the ER discharged me and it got to the point that I could barly move by the evening. When I woke up the next day the pain was still there and I had started to get constipated yet again, but then a very compressed poop managed to come out and it actually burst the abscess beside my stoma. The abscess had got to 3/4 of the size of my stoma by the time it actually ruptured and it was very visuly disturbing, but by the evening it had drained and shrank to the size of a pea.

It continued to shrink then became a hole right beside my stoma that an ostomy nurse confirmed to be a fistula. At this point I had still not spoke to my GI who was lounging on a beach somewhere and I was basically stuck dealing with confusion about wha to do next. The drain was removed 3 weeks later after a sonogram confirmed there was not a bowel puncture, however the fluid from my abscess was draining from the hole beside my stoma. I continued to be skeptical about this because I continue to pass gas thru it now.

Now the abscess above my stoma is confirmed to be shrinking although still present. The fistula right beside my stoma continues to pass gas and hurt daily and appears to be hurting more as time goes on. My GI is back and doing the I told you so routine about not starting Remicade sooner but other than that has not put many options my way about where we go from here. Anybody else face a similar situation?

This story is far from complete and I left alot out to make it shorter to read. If anybody has any questions about this fun journey feel free to ask.

Peace
10-05-2011, 01:25 PM   #2
Grumbletum
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Hello Ignitus
Sorry to hear you are having fistula fun :-( I have seen some people on these forums who have subcutaneous abdominal fistulas, but don't think I've read of anyone having one close to a stoma. Have you had a browse through the Stoma sub-forum?
Have you started on the Remidade infusions yet?
__________________
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
10-05-2011, 01:53 PM   #3
Terriernut
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Oh my. Come on over to our stoma subforum. You've been thru the mill alright. ER's dont seem to 'get' us do they????

What are you on now medication wise? Antibiotics as well? This must be excruciating!

Welcome my friend.
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Misty
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
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10-06-2011, 02:58 AM   #4
Tay
 
Join Date: Dec 2010
Location: Cardiff, United Kingdom
Sounds familiar. I developed a golf ball size abscess next to my stoma. This was drained with a drain left in situ. Redness and swelling improved so they removed drain. The plan was to pull some of the bowel through the existing hole and re fashion the stoma. They left me on the waiting list for months. The drain exit wound healed over but I then developed about 7 fistula exit sites around stoma, pus everywhere, pain, bags coming off etc. I eventally went to GP in a right mess. He phoned the hospital and I was admitted. Because of this delay I had to have my stoma resited on the other side and the old stoma site could not be sewn up because of the fistula and had to heal from bottom up - packing etc.
10-06-2011, 12:20 PM   #5
Ignitus
 
Join Date: Jun 2011
Location: Ontario, Canada
Thank you all for responding. Currently my medication list is 100mg imuran, 50mg Elavil, 1g Cipro and 750mg Flagyl and I don't have any medication coverage so there eating up a good chunk of income. I'm not on Remicade yet as I can't afford the cost however my doctor says he can get it covered if Imuran alone does not work but I have to give it up to six months.

Tay sorry you had to deal with this as well and it does sound very similar to my situation. My doctors have said they cant proceed with treatment until the abscess is gone and my inflammation comes down, so that basically leaves me playing the waiting game. The abscess is said to be shrinking slowly so I have my fingers crossed that it heals up quick and doesn't return.
10-07-2011, 02:29 AM   #6
Tay
 
Join Date: Dec 2010
Location: Cardiff, United Kingdom
Ignitus - hope things get better for you. The National Health Service isn't as good as it was, but I don't know how you manage having to pay. Must really add to the stress +++
01-11-2015, 08:46 PM   #7
aimeey17
 
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Ignitis I see this post was a long time ago but im am going through almost the exact thing. Wondering how things turned out for you?



QUOTE=Ignitus;352803]Here goes an interesting tale with no ending in sight currently. Back in late May I started having a very bad flare up, now I have never been in remission but it got to the point 3-4 days a week I was basically bed ridden. The pains started to hurt with every bowel movement and lasted hours after with a feeling like something was twisting my stoma. After awhile the pain just never went away and I became constipated and though I had an obstruction. Went to the hospital in pain and they did a CT which showed bad inflammation thru my ascending and transverse colon.

After this and the worry expressed by the doctor I decided to do something I never have up until this point and I bite the bullet and started taking meds to try and control it before it got out of hand. This continued for 2 more months trying all kinds of combinations of medicin with very little results. My GI went on vacation early august 1st-24th and left me on a 30mg Pred taper and imuran. Before he left I had told him about the bad pains I had been having weekly and the sharp stabing pain above my stoma that came and went but were very intense for several seconds, he attributed it to the flare and said to stick to the course with the meds.

At the end of July I had a cramp that never went away, and above my stoma was so sore I broke into my reserved pain killers just to sleep thru the night. The pain was radiating into my back I was sore all over and decided on august 5th to go back to the ER. After performing a CT Scan I was informed that I had a abscess right above my stoma in a crecent shape and I would need a JP drain in for several weeks to help heal it. The op went smooth and I was released after 4 day in the hospital.

The day after I was released and was changing my ostomy flange I noticed a slight red area that was a little more buldgy than usual and hurt to the touch right beside my stoma. I monitored it for 3 days at which point it had grown to half the size of my stoma and had a white appearance with vains viable. It was also very painful now and although I was cutting the waffer to accommodate this it was not helping ease the pain. I decided to make my 3rd trip back to the ER and see what was up now.

The doctors in the ER said that it might be part of the other abscess that was not draining thru the tube and they ordered an ultrasound to get an idea of what it was. The ultrasound could not get close enough to my stoma to see anything and because I had just had a ct they would not do another an they sent me home and said "if it obstructs your bowel movements then come back and will look into it further". I left the hospital very angry feeling like nobody had a clue what to do and that I would just have to deal with this alone.

The pain just kept intensifying after the ER discharged me and it got to the point that I could barly move by the evening. When I woke up the next day the pain was still there and I had started to get constipated yet again, but then a very compressed poop managed to come out and it actually burst the abscess beside my stoma. The abscess had got to 3/4 of the size of my stoma by the time it actually ruptured and it was very visuly disturbing, but by the evening it had drained and shrank to the size of a pea.

It continued to shrink then became a hole right beside my stoma that an ostomy nurse confirmed to be a fistula. At this point I had still not spoke to my GI who was lounging on a beach somewhere and I was basically stuck dealing with confusion about wha to do next. The drain was removed 3 weeks later after a sonogram confirmed there was not a bowel puncture, however the fluid from my abscess was draining from the hole beside my stoma. I continued to be skeptical about this because I continue to pass gas thru it now.

Now the abscess above my stoma is confirmed to be shrinking although still present. The fistula right beside my stoma continues to pass gas and hurt daily and appears to be hurting more as time goes on. My GI is back and doing the I told you so routine about not starting Remicade sooner but other than that has not put many options my way about where we go from here. Anybody else face a similar situation?

This story is far from complete and I left alot out to make it shorter to read. If anybody has any questions about this fun journey feel free to ask.

Peace[/QUOTE]
01-13-2015, 03:09 PM   #8
Ignitus
 
Join Date: Jun 2011
Location: Ontario, Canada
Hey aimeey I'm sorry to hear that you are having to deal with a similar situation to what I went thru. I actually continued to get worse as I delt with a new surgeon to have my first non emergency surgery. He was very approachable and we worked out what options I had available, the soonest he could operate was February as the Canadian healthcare system moves slow.

I made it to my surgery date struggling with pain and depression the whole way thru. When I wook up the surgeon told me I had 3 fistulas one beside my stoma one connected to my small intestine and one going into my stomach. My recovery went well and I was back to work within a month and pain free for the first time in my life.

I have been pain free now for 3 year minutes 2-3 small flairs. I continue to have a stoma and don't know that I will reverse because I don't want to mess up a good thing. My gi has found inflammation on a scope a month ago but I continue to manage my disease med free for now.

I never would have though I could feel like this and I hope you end up with similar success in which ever path you choose. I will give a quick plug for Mindfullness as it helped me get though my toughest times by bringing awareness to my body. The Mindfulness Solution To Pain by Jackie Gardner-Nix is a great book which I would highly recommend, might not be for everybody but I help me a lot.

If you ever need more info or just to vent feel free to ask I know how stressful it can be.
01-13-2015, 04:10 PM   #9
DJW
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Thank you all for responding. Currently my medication list is 100mg imuran, 50mg Elavil, 1g Cipro and 750mg Flagyl and I don't have any medication coverage so there eating up a good chunk of income. I'm not on Remicade yet as I can't afford the cost however my doctor says he can get it covered if Imuran alone does not work but I have to give it up to six months.

Tay sorry you had to deal with this as well and it does sound very similar to my situation. My doctors have said they cant proceed with treatment until the abscess is gone and my inflammation comes down, so that basically leaves me playing the waiting game. The abscess is said to be shrinking slowly so I have my fingers crossed that it heals up quick and doesn't return.

Have you looked into the Trillium Drug Program for Ontario residents. You may get some help there.

The link is in my signature.
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Dave
01-14-2015, 09:08 AM   #10
Jimena
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I just read your post and have to answer. I am just in a hospital, my surgery was last friday. I had fistulas over my stoma too. It was colostomy so they removed ny colon and made an ileostomy on my right side. Feelin rough but hopefully heal up soon! Good to hear you are feeling good!
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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.
03-13-2016, 05:04 PM   #11
Beclun
 
Join Date: Mar 2016
Hi, I just read your post, I know its from a while ago but It caught my eye, my boyfriend is currently in a similar situation, he has been diagnosed with an abscess by his stoma, and has fistula's at either end of the bowel, he has been told he has to have the stoma relocated, that's the best case sinario, worst case, he has to have part of his stomach removed (he also has collitus) and his rectum removed... as well as the stoma relocation... has anyone else had this experience?
03-25-2017, 11:09 PM   #12
jca2017
 
Join Date: Mar 2017
Location: Massachusetts
Hi, I know this is a bit late from the original post, but I can't find many people who have experienced these issues. I started developing a peristomal abscess turned fistula back in January, and have been dealing with it since. I've seen a surgeon and GI, and they both essentially told me that we need to get my Crohn's under control first (it's still quite active in my terminal ileum). Too bad I've tried all the available biologics and am currently on prednisone... getting inflammation under control is easier said than done.

I'm curious if any of you have heard about one of these healing on their own? My GI gave me an MRI and ileoscopy, but wasn't able to see the fistula / abscess on either... Regardless I am very actively passing stool through it, and it's been 'storing' more lately which I have to actively push out when bag changing. Ultimately it doesn't seem like something that's going to be a great long term solution? Not to mention that at this point the skin around my stoma is getting pretty tired of all this... I would rather not have my stoma relocated and would rather not lose more intestine, but this fistula is holding back my life! Ugh.

Thanks for any help!
03-27-2017, 02:23 AM   #13
Jambo1874
 
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Location: Stevenage, United Kingdom

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This all sounds horrible for everyone and I have anal fistula, abscess, seton stitches, massive Crohns flare up. Burning pain. Prolific discharge. Surgeon did one op and could not find fistula. Second put seton stitches in. Started Inflixihab to reduce Crohns and eliminate source of discharge - not working so far. I have had Crohns for 35 years but the fistula and discharge, for the past two years, are life changing and do your head in.
This is all 'normal, for all of you I imagine.
The reason I am on this forum is to see if anyone has had success with alternative remedies like vitamins, foods to avoid (I have a list myself), exercise, daily routines, etc.
Does anything work - any success stories?

Last edited by Jambo1874; 03-27-2017 at 02:25 AM. Reason: Clarification
03-28-2017, 10:58 AM   #14
Bufford
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Have you tried Tumeric? I have had good results with it. I mix a teaspoon of Tumeric curcuma powder into a glass of water on an empty stomach an hour and a half before lunch. It works better on an empty stomach. Avoid taking it in the evening as it may interrupt sleep.
03-28-2017, 04:52 PM   #15
Jambo1874
 
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Just read up on it and it sounds as if it has potential. I will give it a go just as you describe. Thanks very much. Nothing else is working and I just had the day from hell so nothing to lose. I will keep you posted.
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