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12-16-2014, 04:22 PM   #1
Elizajp
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Join Date: Mar 2014
What triggers fistula

So I've got quite the fistula saga. As of right now I've got four setons, on a super strict diet and supplements (remicade failed and trying to stay away from humira,) and for the most part on most days I'm not in too much pain, other than just uncomfortable, and I have minimal drainage. But then some days I will randomly go to the bathroom like three times instead of one or two (haven't had digestive symptoms since the Spring) and the fistula will just totally freak out with tons of pain and drainage. I cannot link it to any food. I'm on SCD and have tried eliminating all the theoretical extra triggers. I have no idea what it is. But like I'm living a fairly normal life as much as you can with setons and then I will have that extra bathroom trip and it will complete knock me out for the day. I do the sitz baths and all that and no pain meds touch it. Any suggestions? I honestly feel like if this random thing didn't happen every few days these fistulas would heal up. Does anyone experience this?
12-16-2014, 05:21 PM   #2
paul11
 
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Location: Milton, Massachusetts

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I have two setons and had tons of abscesses and two fistulas. the only thing that worked for me and I literally tried every possible thing- alternative strict dieting, alt. meds., supplements, hyperbaric treatment etc. I just got worse until I tried Humira. the pain and inflammation went away within just a couple of days. I tried to stay away from Humira but I was at the end of my options. I hate the side effects but it has worked to keep the crohns in remission for three years.
12-16-2014, 06:40 PM   #3
Elizajp
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Join Date: Mar 2014
@paul11 yeah I'm starting to think that's where I will end up. Just kind of hoping for a miracle sometime soon instead!
12-16-2014, 09:44 PM   #4
paul11
 
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I was hoping for the same. I hope you get a miracle and get better without meds.
12-17-2014, 06:24 AM   #5
Elizajp
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Thanks!!
12-17-2014, 06:40 AM   #6
dave13
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I also have fistulas and setons. Five fistula and three draining setons. Like you,I also follow the SCD.Sometimes we have to turn to what will prevent this disease from causing further damage,even though we would prefer not to.

Make sure you bring any concerns you have up with your GI. Good luck!
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12-17-2014, 08:36 AM   #7
Laughngirl
 
Join Date: Jun 2014

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I have a rather embarrassing problem, but on here I figured you all would understand. Even though I've been diagnosed with mild Crohns, lately I've been experiencing having bowel movements that I am not aware have happened. It's usually just enough to get on my clothes, but not enough for me to notice until I happen to go to the restroom. Can anyone give me advice as to why this may be happening and what I should do? Not only is it frustrating and smelly, it's kind of scary. Any thoughts or advice would be greatly appreciated. (Sorry this is so lengthy).
12-18-2014, 06:43 PM   #8
dave13
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I have a rather embarrassing problem, but on here I figured you all would understand. Even though I've been diagnosed with mild Crohns, lately I've been experiencing having bowel movements that I am not aware have happened. It's usually just enough to get on my clothes, but not enough for me to notice until I happen to go to the restroom. Can anyone give me advice as to why this may be happening and what I should do? Not only is it frustrating and smelly, it's kind of scary. Any thoughts or advice would be greatly appreciated. (Sorry this is so lengthy).
Let your GI know this is happening.
12-18-2014, 11:15 PM   #9
theOcean
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So I've got quite the fistula saga. As of right now I've got four setons, on a super strict diet and supplements (remicade failed and trying to stay away from humira,) and for the most part on most days I'm not in too much pain, other than just uncomfortable, and I have minimal drainage. But then some days I will randomly go to the bathroom like three times instead of one or two (haven't had digestive symptoms since the Spring) and the fistula will just totally freak out with tons of pain and drainage. I cannot link it to any food. I'm on SCD and have tried eliminating all the theoretical extra triggers. I have no idea what it is. But like I'm living a fairly normal life as much as you can with setons and then I will have that extra bathroom trip and it will complete knock me out for the day. I do the sitz baths and all that and no pain meds touch it. Any suggestions? I honestly feel like if this random thing didn't happen every few days these fistulas would heal up. Does anyone experience this?

Humira was the only thing that helped me. Within a month all drainage stopped and I haven't had any problems since, and even got my seton removed.
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
12-20-2014, 04:34 PM   #10
UnXmas
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I have a rather embarrassing problem, but on here I figured you all would understand. Even though I've been diagnosed with mild Crohns, lately I've been experiencing having bowel movements that I am not aware have happened. It's usually just enough to get on my clothes, but not enough for me to notice until I happen to go to the restroom. Can anyone give me advice as to why this may be happening and what I should do? Not only is it frustrating and smelly, it's kind of scary. Any thoughts or advice would be greatly appreciated. (Sorry this is so lengthy).
Quite common (and fixable) rectal problems such as rectal prolapse can cause this. If you've had a lot of diarrhoea from Crohn's it can make rectal prolapses more likely due to the strain in puts on the rectum over time (constipation puts strain on it too, though since you have Crohn's I'm guessing diarrhoea is more likely). Check to see if you have any bulge from the anus, and also for tears in the skin around the anus where stool may be leaking out. A doctor can also do a simple rectal examination for you and check for these and other abnormalities.

Another situation in which faecal incontinence can occur is when the colon is impacted, and small amounts of liquid stool from further up the digestive tract leaks round the impaction.

Do you know if you ever pass stool when you think you're only passing wind? This and passing stool with no awareness at all can also be due to nerve or muscle problems.

All these are just possibilities - don't get overly worried about them. If you're concerned a colorectal specialist would probably be the best person to see. Incontinence pads will keep your clothes clean in the mean time.
12-20-2014, 09:50 PM   #11
Jay Woodman
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Location: Nova Scotia

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@Elizajp I also tired SCD, Supplements, trying to avoid Biologics. I'm just completed Remicade #3. I am really hoping that will work. I have no idea why the fistulas were triggered but after avoiding medications since 2011, I finally decided it was time to start a Biologic. My medication free approach was not working. I now have three fistulas all with double tract setons. I just feared more fistulas continuing...
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Perianal Crohn's
Curcumin
Garlic
Grape Seed Extract
Vitamin C
Vitamin D - 5000 IU Daily
Omega 3 - 2 teaspoons NutraSea daily
Methotrexate
Remicade (+Hydrocortisone)
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