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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » A serious cry for help! new kid on the block with a story to tell



02-17-2014, 07:56 PM   #1
weezer
 
Join Date: Feb 2014
Location: Maryland
A serious cry for help! new kid on the block with a story to tell

hello everyone im a 22 year old male im glad to be here to share my story and receive advice and help others

so here is my story

it all started in 2012. i developed a huge abscess beneath my right butt cheek boy was it hell! i couldn't walk or anything. i went to Dr express ( a supposedly fast clinic)to see if they could lance but they couldnt because it didnt have a head. i tried to wait for the head to appear but the pain was unbearable! so the dr at dr express went ahead and lanced without the head which made things worse! it was still huge and sore but now it was draining profusely the odor was horrible and the pain ahhhhh!! the worst! so i went to the hospital to have it looked at by a specialist. i had my surgery on halloween i was so scared because bad things are associated with halloween haha and while i was waiting to be operated on i was watching this tv show where the dad died!!

the surgery was a success thank god! haha.i remember my doc telling me about a possible fistula but i didnt pay attention to her i was just so focused on healing and getting back to my life. a had seton, it didnt bother me at all but one day while having a bm it fell out! the doc assured me that it was ok. i healed up but there was still a smallhole under my right cheek with minimal draining. i went to another specialist she gave me a colonoscopy to see if i had ulcerative collitis or Crohn's but she found no signs. gas and stool was starting to come out the hole. went to see anther specialist but he was focused on doing other things which pissed me off because i wanted him to fix the fistula. i become of age where i couldnt be on my parents insurance so i had to get my own which took a while and i stopped going to the doc.

a year and a half later i still have the fistula its still passing stool and gas no pain but its very annoying and frustrating. i dont even get fully naked when having sex and i have to keep buying those damn pads so nothing gets on my underwear although there has been times where the pad slipped out of place and the fistula left stains in my underwear i freakin hate it!! i am absolutely terrified of having a fistulotomy or any fistula surgery i am interested in trying alternative methods, is there a medicine i can take to fix it? am i candidate for the hyperbolic oxygen chamber therapy?
02-17-2014, 08:20 PM   #2
durwardian
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that it isn't healing is a pain, sorry. What have you tried, hot soaking? The fix, sorry to say, is to clean out that tract and cauterize it closed at the exit, usually all the way down the tract if it has been around too long. It's like getting your ear pierced, the hole remains for awhile, if it keeps getting used, it won't close right. My doc scraped mine clean last time, then it closed up. So follow up with the doc, they assume if you don't come back that it is all fine and you don't need any further help. Many doctors don't have any clue how to help. This is where it is important to have a primary GI, gastrointestinal specialist, as your doctor.
I hope the fistula was a once in a lifetime thing. Soak in hot water, get it cleaned out, and it can be closed up so it doesn't bother you. It sounds like it has an unobstructed and clear passage to your rectum, so it should be an easy fix.
Good luck
02-18-2014, 05:48 PM   #3
Grumbletum
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Hello Weezer. I am so sorry to hear about your issues. There are quite a few people on the forum who have had success with Remicade infusions which is something you might want to discuss with your doctors. Also, Sailorluna, who has had fistula issues for some time will probably be along soon and will tell you about her situation.
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Ileocaecal resection & partial cystectomy Sept 2012
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02-18-2014, 08:18 PM   #4
BadLuck
 
Join Date: Feb 2014
Might make some people angry to say it, but I really don't think doctors could care less. I've been trying to get my fistulas closed for over 16 years. Many more have formed since then. Remicade didn't work for me. I was hoping to get to try fibrin glue, but they wouldn't even attempt it because of the chance of a recurring fistula, so what's the point? I stopped going to the doctor completely. I just tape pads over them and use imodium to slow my bowels. Don't consume alcohol, caffeine or anything that might irritate your intestine. I know it sounds stupid but when I drink alcohol, the output from my fistulas quadruples and infection quickly ensues.
02-18-2014, 08:30 PM   #5
jlm
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My doctors helped me out. I formed a fistula at my incision site. Took about 6 months to close but with a combination of flagyl, cipro, Humira and bowel rest (2months maybe) it was good to go. My doctors are super attentive and watch me pretty closely. If one GI gets stuck she asks another for help, guess I'm lucky that way. I don't think it's possible to heal a fistula on your own with diet. Do a bit of research and go in to your doctors educated and fight for a fix.
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02-19-2014, 04:39 PM   #6
DougUte
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Hi Weezer. To get that fistula closed you really need to go to a GI.
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Due to the insurance company, Humira ended on January 31, 2017.
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02-21-2014, 03:58 PM   #7
Sailorluna
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Hi Weezer

You can use heat to keep it comfortable and help with drainage but it will not heal on its own. I am sorry they don't seem to be helping you. What kind of specialist are you seeing?

There are medical option for getting rid of the thing depending on various factors. If they don't think you have crohns and you don't have rectal inflammation you may be able to have it removed or a cutting seton etc. A GP is likely to not know all of your options. For me - any fistula issue means I am talking to my colorectal surgeon. He is far more knowledgeable than even my GI.

They may continue to try to establish whether you have crohns or not before taking action though... some of the surgical options will not heal correctly if you do have it and they don't want to make that mistake.
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Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
folic acid
2 lomotil
2 Welchol
B12 injections (monthly)
Remicade

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Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
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