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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Fissures/Skin Tags, Hemmys....



06-03-2017, 09:15 PM   #1
Melissadempsey728
 
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Join Date: Aug 2014
Location: Florida

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Fissures/Skin Tags, Hemmys....

Hello all, I'm wondering if there is any hope for those with the crohn's mostly manifesting in the anal region. I struggle with a fistula that is constantly opening and closing, I've tried a seton, a lift, something to do with a pig's intestine as a plug, nothing really seemed to help.

Also with those surgeries have had the skin tags removed and I was so pleased afterwards! Have had 4 surgeries so far, working on both the fistula and skin tags, and each time the skin tags seem to be ok and then come back after about a year. Nothing I seem to do helps, and it's almost to the point that I'm wondering if I should just get surgery on them every year...is that extreme? I sometimes get bad bouts of diarrhea which makes them very sore.

I get infusions of remicade every 6 weeks which seems to help with the fistula and diarrhea, but not the hemmys. Any advice, what do you guys think? Just getting very frustrated and annoyed with all this.
__________________
Dx with several fistulas Aug 2014
Started Remicade Sept 2014
06-03-2017, 11:11 PM   #2
Ihatefistulas
 
Join Date: Oct 2016
Hello all, I'm wondering if there is any hope for those with the crohn's mostly manifesting in the anal region. I struggle with a fistula that is constantly opening and closing, I've tried a seton, a lift, something to do with a pig's intestine as a plug, nothing really seemed to help.

Also with those surgeries have had the skin tags removed and I was so pleased afterwards! Have had 4 surgeries so far, working on both the fistula and skin tags, and each time the skin tags seem to be ok and then come back after about a year. Nothing I seem to do helps, and it's almost to the point that I'm wondering if I should just get surgery on them every year...is that extreme? I sometimes get bad bouts of diarrhea which makes them very sore.

I get infusions of remicade every 6 weeks which seems to help with the fistula and diarrhea, but not the hemmys. Any advice, what do you guys think? Just getting very frustrated and annoyed with all this.
Sorry to hear things are not quite getting their with the fistula tract and tags. The only other suggestion I can make from recent personal experience is to get your trough levels checked on remicade, just to make sure you are not building up an immunity or dropping below therapeutic levels.

I found at about year 3 that I was not metabolizing Imuran which meant I couldn't reach therapeutic levels of 6TGN without my 6MMP levels getting too high. I had to add Allopurinal to optimize Thiopurine Immunomodulator Efficacy (Allopurinal is usually used to treat gout, but also has as a side effect of the ability to switch thiopurine metabolism toward 6-TGN production), after this I saw some improvement in symptoms.

By far the greatest response in treatment has come in the last 6 months when a new Registrar decided we should check my trough levels of Humira, which came back showing that I was well under therapeutic dose. I have since managed to get approval for compassionate dose and now take it weekly instead of fortnightly. This has had a life altering effect and I am now back to full time work.

I am now a big advocate for testing levels (given both my main medications were an issue, lucky me).

I am fairly certain Remicade has a similar test, and I have heard of Crohn's patients who have built up a resistance to Remicade, so perhaps worth testing given you are not quite reaching remision.

I did have hemeroids about 15 years ago, but fortunately they did not return after being banded, although I do wonder if perhaps they were crohn's related or perhaps the banding created a small section which would later open to become the fistula I now have.
06-04-2017, 10:00 AM   #3
Melissadempsey728
 
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Join Date: Aug 2014
Location: Florida

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Sorry to hear things are not quite getting their with the fistula tract and tags. The only other suggestion I can make from recent personal experience is to get your trough levels checked on remicade, just to make sure you are not building up an immunity or dropping below therapeutic levels.

I found at about year 3 that I was not metabolizing Imuran which meant I couldn't reach therapeutic levels of 6TGN without my 6MMP levels getting too high. I had to add Allopurinal to optimize Thiopurine Immunomodulator Efficacy (Allopurinal is usually used to treat gout, but also has as a side effect of the ability to switch thiopurine metabolism toward 6-TGN production), after this I saw some improvement in symptoms.

By far the greatest response in treatment has come in the last 6 months when a new Registrar decided we should check my trough levels of Humira, which came back showing that I was well under therapeutic dose. I have since managed to get approval for compassionate dose and now take it weekly instead of fortnightly. This has had a life altering effect and I am now back to full time work.

I am now a big advocate for testing levels (given both my main medications were an issue, lucky me).

I am fairly certain Remicade has a similar test, and I have heard of Crohn's patients who have built up a resistance to Remicade, so perhaps worth testing given you are not quite reaching remision.

I did have hemeroids about 15 years ago, but fortunately they did not return after being banded, although I do wonder if perhaps they were crohn's related or perhaps the banding created a small section which would later open to become the fistula I now have.
I've never even heard of trough levels, I'll definitely bring that up at my next appointment! I'm happy to hear you've had good luck recently, it's encouraging.

Fistulas are so frustrating, I don't want to just live with it and accept it but it almost seems like that's what I must do eventually. And I'm freakin tired of getting a rectal exam every time I go to the Dr! So embarrassing lol!
06-05-2017, 07:07 AM   #4
Ihatefistulas
 
Join Date: Oct 2016
I've never even heard of trough levels, I'll definitely bring that up at my next appointment! I'm happy to hear you've had good luck recently, it's encouraging.

Fistulas are so frustrating, I don't want to just live with it and accept it but it almost seems like that's what I must do eventually. And I'm freakin tired of getting a rectal exam every time I go to the Dr! So embarrassing lol!
Here is a bit of info on the trough test for Remicade (infliximab):

https://www.ncbi.nlm.nih.gov/pubmed/16931170

The basic idea is you get a blood test just before your infusion, and this checks the level in your system.

Yes I certainly agree, fistulas are very frustrating, I too suspect I may need to live with them, but if you are getting closure for a period, then certainly worth trying to see if you can get a permanent result. My next decision if things continue to improve, is should I remove the setons, and if so when, as I am not sure if I want to risk the abscess reforming.

If you haven't seen your colorectal surgeon in some time, it may also pay to see them for a review also. My surgeon said fistulas need to be treated by a team, the gastro specialist covers the Crohn's, but the surgeon needs to be involved too. He said a pocket as small as a grain of rice can be big enough to mean that things can go into a build burst cycle, even with medications at required levels. My last surgery was forced, but he went in a second time to remove scar tissue as he suspected this was creating opportunities for small pockets of infection to form.

As for the examinations, well I had my first operations in a training hospital and the training doctors would show up with the surgeon daily, so I lost the embarrassment fairly early on, the morning rounds looked like this I can certainly understand the embarrassment though, I think I just hit a point where I thought, I have to just deal with it. I think I would have struggled more if I had to deal with this earlier in my life though.

Last month I saw my gastro registrar and I thought he was asking me to get undressed for the examination, turns out he was just commenting on how good I seemed to be walking (the abscesses had been causing me to limp), it was fairly embarrassing when I realised as I had already undone my belt lol

All the best, I hope you can get the fistula to close permanently

Cheers,

Cameron
07-20-2017, 07:07 PM   #5
pedram
 
Join Date: Jul 2017
Location: Tehran, Iran
I am suffering from hemorrhoids and fissures for a long time and even my swollen rectum is now an issue for doing the colonoscopy. My GI is insisting any surgery will have a limited result with a high risk of further complication or infection due to crohns' so he tells me to just live with it .

Did you have the surgeries for tags and roids or specifically for fistula ? I am looking over the web to know if a surgery for hemorrhoids in crohns patient worths it or not.
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