Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Two GI's and One Doctor Has Advised Me To Not Seek Treatment For My Fistulas

03-02-2014, 02:13 AM   #1
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Amaze's Avatar
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Location: New York, NY

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Two GI's and One Doctor Has Advised Me To Not Seek Treatment For My Fistulas


As you may or may not know I been struggling with two fistulas lately. I had spoken to two GI's along with my primary Doctor and all 3 have advised me against seeking treatment for my fistulas. They said that with Crohns Disease it is extremely difficult to treat fistulas and no matter which surgery I get chances are it will just re occur constantly.

I am not sure how to react at the moment.
Diagnosed: 2009

"A sad soul can kill you quicker, far quicker, than a germ."

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03-02-2014, 08:54 AM   #2
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Kero's Avatar
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So what are you supposed to do? Just deal with them? That is BS Sorry you have to deal with them
03-02-2014, 10:28 AM   #3
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I have been told the same. My surgeon said that you have 0 inflammation in the area to even consider any of the fistula surgeries beyond seton placement and drainage. When we talked through plugs and flaps he said it was likely to cause the fistula hole in the rectum to grow larger. He said that when those things fail they tend to destroy the good tissue around them.

It sucks but I have seen some horrible scary stories of people having the flap fail and things getting much worse. When the crohns is completely under control and no longer active maybe it is something that you can look into again..?

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)

Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
03-02-2014, 11:15 AM   #4
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Location: Connecticut

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I have been dealing with fistulas for 5 years , 4 years ago I had a colostomy to let them heal , 6 months after had a reversal they just flared up right away . Surgeon don't want to do anything but setons , had as many as 5 setons ,none now, last July did a major diet change ,that helped a lot with arthritis and bathroom trips and Last week started humira . Spent a lot of time on flagy (nasty stuff) , .until I recently joined this forum my doctors made feel like I was the only one who deals with this !
03-02-2014, 12:37 PM   #5
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pink&green's Avatar
That makes since hubby had had them removed 3x since 2005 and those suckers keep coming back.
Hubby Diagnosed 12/15/90
1/3 colon removed
12 inches of small intestine removed
Appendix removed
2007 Hemorrhoids removed
2006 resection:
2005 first perianal fistula(removed 3x & lanced still keep coming back)
2014 partial nephrectomy (stage1)
Previously medications:Humira-anaphylaxis reaction, Remicade, Cimzia, Entyvio
Current medications:
B-12, 6mp, flagyl, prednisone,
Tramadol(fistula & joint pain)

03-02-2014, 07:32 PM   #6
Join Date: May 2013
I have had the same response. My GI sent me to the surgeon and the surgeon the same thing your doctors are saying surgery won't help and they'll just come back. I've had fistulas for over 15 years and I've only had two abscess, the second one started last week.

My GI wants me to go back to the same guy that said no 5 months ago. I really don't want surgery so I am not going.
03-02-2014, 09:16 PM   #7
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Location: Pennsylvania

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My son suffers with these wretched things.
I'm not sure what your exact situation is but it was explained to us that the surgeon really won't do more than seton placement unless you are in remission because it probably won't heal properly. Also, it's not like a bad knee, where you get surgery and it's then fixed. For a fistula, you can have surgery & it can happen again in that same spot. So unless it is really unbearable or abscessed you leave it.
My poor boy currently has 2 setons.
It's not easy dealing with any of this! Good luck with everything!
mom to LJ 16 (dx 12)
Prednisone 1-30-14 to 10-14
Current meds
Folic acid
Back on Humira 8/22/14
Remicade 11/22/13-7/24/14
Humira 7/13-11/13)
03-21-2014, 06:32 PM   #8
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They won't even do setons? I've found mine to make a big difference for the better. I have to wEar a pad constantly to collect drainage, but less pain and inflammation.
Diagnosed in with Crohn's in large and small bowel in 2000.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 4 weeks, Flagyl and Cipro 500 mg twice a day

Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone, Imuran
03-23-2014, 02:28 AM   #9
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Thank you for all your responses. I recently had an MRI done and will see a rectal surgeon next week. Even though my Gi's dont want me to do anything I want to see what a rectal surgeon has to say.

My only issue is that I have a drug screening for a crappy job at the same day and time. I dont know which one to push.
03-26-2014, 07:04 PM   #10
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I seen a surgeon today and aside from the Crohns disease, arthritis, two-three fistulas, ulcerations, butt cheek pain and bloody stools. One of the fistulas is grade 4 with a tract.

I also am newly diagnosed to a "gaping fissure" and a "prostatic cyst"

what makes these go away?
03-26-2014, 07:34 PM   #11
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Join Date: Apr 2013
Hi Amaze, I have seen many have a lot of problems, pain etc. with these. I am really sorry you are having so much trouble.
I totally understand. However ~ I have mentioned the following a few times and it healed mine. I do have a seton that is doing great, that was not always the situation. At first it was doing awful and I was going to need some pretty scary ops to it. I had 10 days to get it in shape and I did. I have yet to see anyone else try it. I researched before I tried this and suggest you do the same, also ask your Dr. First.
Simple ~ I drank ORGANIC BARLEY GREEN (powder form mixed with grape juice) 3 x a day, little amounts in a shot glass. YES it did heal enough to the point I needed NO further treatment for the Fistula. It was the ONLY thing I did different. Plus it is said to be nutritious.
Sounds so simple, I know......
So, ask your Dr. if you can try it. If you do please post your outcome.

Take care.
03-26-2014, 10:24 PM   #12
Join Date: Mar 2014
Location: Calgary, Alberta
Hi All! I've been poking around this forum for years but reading this post today gave me a push to sign up because I wanted to reply to you.

I've had Crohn's for 12 years, 8 of those years my main symptom has been abscesses and fistulas. I've seen multiple doctors and done incredible amounts of research. My surgeon has said the same as the other posts here and that is they won't fix the fistula or typically corresponding abscess in a patient with IBD because a flare up can happen anytime, and typically another one pops right back up where the last was removed from. And that's if you don't end up with complications that land you with a bag.

I have had success with setons, and recently had another placed this past September but even with them placed I'm still suffering with pain and swelling. We are switching up my meds to see if that makes a difference so we'll see how that goes.

I mainly wanted to write you because I have felt for such a long time that there were so few people in the world this happens to and I was one of them. As hard as this can be to deal with I wanted you to know that there was someone else out there who had been given the less than hopeful news to not fix them. Maybe this didn't help much or at all, but know I feel your frustration!

Keep your head up!
03-28-2014, 12:38 AM   #13
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I spoke to multiple doctors, Gi's, and surgeons today. They all have agreed that they want me on remicade but I fear I will develop cancer and die. I have horrible luck
03-29-2014, 04:57 PM   #14
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I was on Remicade previously, and also have another friend who's been on it for 13 years with no problems if that helps assure you at all!

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!

Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Two GI's and One Doctor Has Advised Me To Not Seek Treatment For My Fistulas
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