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It's really strange. I could feel and see a bump right around the seton. They referred to it as "clogged". They want to get the seton out. I'm just confused at this point.
 
Abbynormal said:
Hi everyone I've got a rectal fistula because of my Crohn's and I had surgery on Tuesday. The surgeon said he wasn't sure what he would do until he had looked and said it would be 1 of 3 options. I woke up after surgery and was told I'd had a seton put in place as the fistula runs across the rectal muscles. It's still very sore and tender and I can't sit directly on my bottom. Walking is manageable but very slow. I haven't opened my bowels since having the surgery because it hurts too much and I'm worried about catching it. Anyone got any advice, or can relate? Also how long did it take you to recover from colorectal surgery? Thanks :)
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I've had two setons and at first you should feel the setons as very uncomfortable and actually pretty annoying. As time passes(maybe a few weeks) the seton should soften to the point of feeling like a small rubber band. At that point you should notice the pain decreasing quite a bit.As far as going to the toilet I would use something called mirilax if you have this in your country( I learned this the hard way so to speak). this will soften the stool and have a slight laxative making it much easier to go. Hope this helps!
 
My Fistula story is long so I won't bore off on it. Suffice to say has anyone had a cutting Seton for it to only be replaced with a drainage seton due to necrosis/sepsis. I've heard that CD is contraindicated with cutting Setons. Anyone had similar issues or heard of the cutting versus drainage issues for CD patients?
 
GABoy, I'm sorry you are in pain. Hope the drainage provides some relief soon. I do not know what they mean by the seton got clogged. The only thing I can think of is maybe some part of the tract INSIDE narrowed around the seton. Sometimes with mine I get bits of tissue breaking off and making their way out the external hole, so maybe something like that could have got stuck inside?

Do they plan to take the seton out completely or change to another one? Do you have that scheduled? I just agreed yesterday to have my tract scraped out (under GA thankfully!) as apparently the granulation tissue that has formed is preventing it from healing up.

Plan is, as Robrich said, to be aggressive with meds - increasing Humira to weekly - in hope that it closes up and then aim to take the seton out. I'm pleased to have a clear plan again but no idea if it will work!

@Needananswer - sorry I don't know anything about cutting setons. It was never proposed as an option for me. I hope the draining seton is giving you some relief.

@Paul11 & @Abbeynormal - different materials are used for the seton, depending on the surgeon's preference. I first had one like a rubber band (silastic) but new one is a braided thread (ethibond). I didn't notice either of them softening over time, but the pain went with time after the placement of the first seton, as the tissue healed. How are you feeling now Abbey?
 
Hope they get you sorted soon GABoy!!
Thanks paul11- luckily I bit the bullet and opened my bowels- it hurt but I just needed to get it over with especially since I'm used to going quiet a lot. I will make a note of mirilax though for the future:)
I'm ok kat123- I'm still sore but I'm walking about and feeling more like myself.... Just with a very sore bottom lol
It's draining a lot which can be quiet off putting when you see all the blood but if it's a sign of healing then I'll grit and bare it.
My seton is blue and rubber- do they move?because I've noticed today it felt even more uncomfortable like it had moved from its original position.
 
Glad you are feeling a bit better :) It probably needs to drain a lot at the moment. It should quieten down. If you are feeling sore on the skin around due to the drainage, I can recommend Cavillon barrier cream. Not on the wound itself, just the skin around it.

That sounds like my original seton. Yes, they can move around. Mine moves quite freely. Does it have a knot? You'll want to try to keep that on on the outside because if it moves up inside the fistula it could be sore.

xx
 
Kat123 said:
GABoy, I'm sorry you are in pain. Hope the drainage provides some relief soon. I do not know what they mean by the seton got clogged. The only thing I can think of is maybe some part of the tract INSIDE narrowed around the seton. Sometimes with mine I get bits of tissue breaking off and making their way out the external hole, so maybe something like that could have got stuck inside?

Do they plan to take the seton out completely or change to another one? Do you have that scheduled? I just agreed yesterday to have my tract scraped out (under GA thankfully!) as apparently the granulation tissue that has formed is preventing it from healing up.

Plan is, as Robrich said, to be aggressive with meds - increasing Humira to weekly - in hope that it closes up and then aim to take the seton out. I'm pleased to have a clear plan again but no idea if it will work!

@Needananswer - sorry I don't know anything about cutting setons. It was never proposed as an option for me. I hope the draining seton is giving you some relief.

@Paul11 & @Abbeynormal - different materials are used for the seton, depending on the surgeon's preference. I first had one like a rubber band (silastic) but new one is a braided thread (ethibond). I didn't notice either of them softening over time, but the pain went with time after the placement of the first seton, as the tissue healed. How are you feeling now Abbey?
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Sorry about that. That's why I tend not to give advice. One person's situation could be totally different from mine so I guess I was speaking out of my ass(so to speak). That was the only kind of seton that was used on me so that's all I knew about. Sorry again.
 
Don't be sorry! We are all only able to speak from our own experience. I just wanted to say that there were different types in case Abbynormal had a different one.. It's kind of hard because you want to give people advice don't you, but then you have to try to make clear that you can only comment on your own experience.

Like, I should probably have said: MY OWN fistula drained a lot at first, because it needed to as I had an abscess there before the seton was put it, but then it settled down.
 
Thanks kat123 it's really nice to talk to people who understand, I don't know anyone with Crohn's as it doesn't run in my family... Just me who was the lucky one! And know one even knows what a fistula is so explaining that and a seton leaves them looking horrified! I've never heard of cavillon so I'll have a look for it- I have anusol have you used that? I'm not sure if it has a knot on- I couldn't feel one but I don't want to keep poking at it lol
 
Hi everyone,

My CRS recommended moving the seton around on occasion, so that the knot did not irritate the skin.

I'm pretty sore still and am supposed to start a very large trial on Monday. I did this once before when I had a seton and catheter. Sitting was really difficult. Please send some positive thoughts my way as it always seems I have to be at my best when physically I'm at my worst.
 
Yeah, I've had that horrified look, haha.

I've not used anusol. I looked it up and seems to be a haemorrhoids treatment? The cavillon is just to protect the skin in the area around the fistula from the drainage going on it. You can get in on-line. I've never tried in a pharmacy.

If you are feeling brave you could use a mirror. It took me about 3 weeks before I could look, but in that time I was lucky because I had the practice nurses dressing it for me (though it was a pain to have to go to the GP surgery every day). x
 
Good look for Monday GABoy... Hopefully it well make things better in the long run! Yeh the pharmacist recommended it to me when I told them about my fistula- I never used it cause I wasn't certain they even knew what a fistula was! I'll look online for some cavillon. The outer part has been feeling quite sore which is probably from all the drainage. Yeh trying to explain it to people at work is always fun- although they are amazingly supportive. I couldn't imagine having to have it dressed everyday by a nurse
 
I have a question about going back to work. My surgeon told me if I have surgery on Friday, I'll be good to go back on Monday. I do have a desk job at a law office. Any idea on how uncomfortable this may be? Or have any suggestions on making it more comfortable?
 
hingrum said:
I have a question about going back to work. My surgeon told me if I have surgery on Friday, I'll be good to go back on Monday. I do have a desk job at a law office. Any idea on how uncomfortable this may be? Or have any suggestions on making it more comfortable?
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Hi hingrum- I'd say yes in the main you'd be good to go to work on the Monday but then again it all depends on how you react to the surgery. When I had two drainage Setons fitted I was ok after about 2 days (you still know it's there but it is tolerable. However if you are having a cutting seton fitted I'd think twice. Certainly my experience with a cutting seton was awful. I was progressed from a drainage seton to a cutting seton and the pain was unbearable. So much so that within 4-5 days I developed sepsis and necrotising tissue infection. Got switched back to a drainage seton which although slower has allowed my fistulas to calm down. Make sure you get painkillers. Hope this helps and good luck.
 
Hi hingrum, is the surgery for a fistula? I had mine last Tuesday and I'm still sore nearly a week on. I work in a school so I didn't go back later week and now luckily it's the school holidays because I still wouldn't feel like going back. I'm still not walking around properly because it hurts and sitting down is still uncomfortable. I would defiantly recommend painkillers and a cushion!
 
Hi everyone,

Has anyone spoken with their doc about seeking a second opinion? I really like my GI and my CRS. however, I've been told that everything looks great and then abscesses now twice. I think it's time to get a second set of eyes on this. I just want to know the best way to deal with a doc you like when seeking a second opinion. Thanks.
 
GABoy said:
Hi everyone,

Has anyone spoken with their doc about seeking a second opinion? I really like my GI and my CRS. however, I've been told that everything looks great and then abscesses now twice. I think it's time to get a second set of eyes on this. I just want to know the best way to deal with a doc you like when seeking a second opinion. Thanks.
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When it comes to your health care, it shouldn't matter. Its your decision when it comes down to the wire. You are the one who has to live with this disease.
 
Hi GABoy,

I've sought a second opinion twice for my fistula. The first time, I wasn't all that happy with my GI and CRS team. I did not tell them that I was seeking a second opinion, but referred myself to a GI as a private patient (I'm in UK so we have NHS & private treatment - sometimes if you go for private treatment you don't need a GP referral). Then the GI referred me to a CRS. I had investigations (colonoscopy, MRI and EUA) done privately and then I got referred as an NHS patient to that team, which I'm with now. I got hold of my previous colonoscopy reports, MRI images etc from the hospital, but that was an administrative thing - the doctors didn't need to know.

The second time, my current CRS referred me himself to another CRS for a second opinion because he was taking a conservative approach to my treatment which was not the standard approach. Basically on MRI imaging I had lots of sepsis which looked like it should be drained, but very little symptoms and no external fistula opening - so most surgeons wanted to drain it, but I decided to wait and see what happened with time.

I think the surgeon should not be offended by your suggesting a second opinion. There are lots of different approaches to take to treating these things, with no one clearly superior in most cases. But if you feel awkward about it, you don't necessarily have to ask - so long as you can get your reports etc from the hospital.

Do you have a doctor in mind that want to seek a second opinion from? Or do you want your current team to suggest someone?

How did the start of the trial go? Hope you are not in too much pain
 
Hi Kat123,

Thank you. My GI suggested his professor from Mt. Sinai, which is the hub for IBD in NYC. That was before my colonoscopy came back with basically no inflammation. The doctor is Asher Kornbluth whose CV is amazing. I think Pottytime is right and I need to stop worrying about egos and feelings. It is my health I'm talking about. I just happen to personally like my doctors. However in my law practice, I have seen so many bad outcomes and wondered why that person didn't go for a second opinion.

Thank you for asking about the trial. My bluff worked. I showed up with my best face and the other side said they were not ready. The court gave them more time. Thank God because I'm not sure I would've been at my best. I see the CRS on Friday. I'm going to call the GI today to get my records. Every procedure, CT, and office note is in his practice. They are huge and operate as a mini hospital. I'll keep everyone posted. Thank you again.
 
So I did call today and spoke with my GI's office. I advised them I was going to go for the second opinion he had previously suggested. The nurse did not seem as understanding as the doctor did when we first talked about it. I told her I wanted the color pictures from the colonoscopies and sigmoidoscopes. She said, well we already sent the reports. I don't know about each of you, but for me, it's best to have everything.

I'm now getting the surgeon's records, and the radiology to send. My appointment is 11/13. Of course, no insurance taken at this physician's office, so all out of pocket. I just think it is time. Thank you all for the support you've supplied. I'm, at this point, sick physically and mentally. I'm just so tired and want to sleep for about 10 days. But I started a new law practice in January and I have to work. If I don't work, no one here is capable of making money. What I'd give for health at this point.
 
I hope that your second option proves worth it and that they are able to give you some answers and sort you out. I know how it feels to get fobbed off- I was continuously told I had IBS and not IBD and then told my fistula was fine and healing to then need emergency surgery. It would be so much easier if these doctors truly understood what you were going through- I'm sure mine thinks I just like to moan... Most of the time he doesn't even look at me whilst I'm talking! He luckily referred me to seek the opinion of a colorectal surgeon who was understanding and one look at my fistula and he said I need surgery- my actual GI has never ever looked at my fistula!!! Only on MRI's!
 
Hi GABoy,

Well done for getting the second opinion sorted. I agree, it's best to have all the information you can for them.

It takes so much physical and mental energy doesn't it? Good news on the trial delay.

Do let us know how it goes on Friday, and on the 13th. All the best
 
Hi Kat123 I went to my GP yesterday and she gave me some cavillon barrier cream- thanks for the recommendation I've used it a couple of times and it's great! She also gave me some instillagel that comes in syringes and is a clear gel that numbs the area, it's mainly used for insterting catheters and invasive procedures so that you can't feel anything but she said it would be good to try round my fistula and anus when it's really sore. Have you tried this? Or has anyone else tried it? I'll give it a go and let you know if it works 😊
 
Not to continuing complaining constantly, but has anyone had increasing pain with a bump next to the area where the I&D of the anal abscess occurred? I wasn't feeling great, but I had an increase in pain last night. This morning, I felt a bump that had not been there before. This afternoon, the bump is larger. I called the surgeon and am going in at 8:30 am tomorrow. Thoughts?
 
I'm on Cipro and Flagyl. I don't know the dosage. By the way, I don't know why my grammar is so poor in these posts. Mixture of pain meds and autocorrect?
 
Hi all.
I had my first ever seton placed 2weeks ago exactly. (its a pretty blue colour). I was wondering - has anyone ever had their seton sutured in - I am pretty sure mine is sutured to the skin just at the 'exit site'. I cant move the seton string or wiping it sometimes gives me that "pulling" sensation. It also looks like its starting to leave a little pressure wound where the knot is sitting against my skin.
I see my surgeon on Wednesday - will he take the suture out?
Also - Im still having heaps of smelling pus drain from it. I change the gauze every time I pee - so like 2-4hourly and theres always about a 10c (aussie) piece sized ooze.
 
Hi erinjayee, your situation pretty much mirrors mine from several years back. The Seton (also blue) always felt like it was firmly attached to the skin however I suspect it was just the friction of the thread against the length of the fistula. The pulling sensation is normal and in my case ultimately led to its premature removal. Although not a cutting Seton, mine must have been acting this way and ultimately cut its way through after a couple of years.

As for the drainage. I suspect you will continue to have discharge for some time, it is completely normal albeit a real pain to maintain. It will gradually get lesser and lesser over time.

Good luck and all the best.
 
@Abbynormal - I'm glad the cavillon helped. I've not heard of/used the instillgel. Let me know how it works. Do you put it right on the fistula hole?

How are you feeling now? It's been about 2 weeks?

@GABoy - how did your appointment with the surgeon go? I hope that you got some answers. I've not noticed your grammar to be bad and I'm usually a grammar pedant - must be losing my touch ;-) I think the rules can be somewhat relaxed on on-line forums (fora?), and when one is unwell.

@Erinjayee - sorry I can't say anything helpful about the suture. Let us know what the surgeon says. Re drainage, I'm sorry to say that mine has always continued to drain sometimes more, sometimes less. I've read some people on here saying that theirs dried up completely with Humira or infliximab and closed up.
 
@kat123 yeh its two weeks tomorrow and I'm better but it's still sore- if it wasn't for the cavilon it would be a lot worse! The doctor said that you can put it on open wounds- I've only tried it once but preferred the cavilon but I'll keep trying it and let you know
 
Hey Kat123,

Thanks for asking. The appointment was about what I expect... No worries, everything is fine, no abscess. However, on Saturday, I had a lot of blood. So much that it discolored the toilet water. I guess the good news was I felt a bit better after that and the swelling went down. However, it is starting to swell again.

I see him again tomorrow and I am due to fly to my in-laws house in Texas on Wednesday. If I have to cancel my trip, he said he would write a note to ensure that I was refunded fully. I also spoke to him about fecal diversion, as last time I abscessed, they indicated that I could not keep doing that and if I did, FD would be the next step. He said he did not see that as an option, which gives me some hope at this time.

SumCiA, my steon is blue as well. It was very painful and very difficult to move, but that became easier as it settled in. I have had my latest seton since April, so over 6 months. I think it varies by doctor and patient as to how long it will stay in place.

One other question, everyone. If I have a seton, isn't it supposed to prevent abscesses? I'm wondering how I abscessed if I had a seton at the time. I asked the doctors and they said the seton got clogged. It just does not make sense to me.
 
@GABoy regarding the seton and subsequent abscess. The way I picture it (and believe me l try not to, too much) the seton is there to keep the fistula track open and allow continual drainage of the abscess. If either, or more probably both, ends of the fistula get blocked (clogged) then the infection has no exit and the abscess is likely to reform.

It might actually be advantageous to move the seton, if possible, that way it is less likely to clogg up.
 
From the "It Could Be Worse" Department.

In August I got fed up with a persistent perianal infection in my fistulas. I went to the Mayo Clinic in Rochester, MN to get checked out. They did all the tests and scans and then put me under to do an exam under anesthesia as well as take out and put in some setons (I had two from a previous trip to Mayo that needed to be replaced).

I came home, started Entyvio and waited. My infections didn't go away and the inflammation just got worse and worse. After a couple visits to my GI here in Austin, I went to a colorectal surgeon to see about another couple of abscesses I had brewing.

He became concerned about a mass, thinking that it might not be an abscess of inflammation. Turn out, he was right.

Anal Cancer.

Not sure on the staging or treatment yet, but I want this to be a lesson to all of you. If you've had persistent fistulas for more than 5 years (been 10 years for me) you should have a biopsy if you have issues. This wasn't on my radar and it's clear that it wasn't on the radar of my GI in Austin or the GI or surgeons at the Mayo Clinic.

I'd say if you ever have to go under for seton placement, exam under anesthesia, or incision and drain, have them do a biopsy, just in case. There's only about 4,000 cases of Anal Cancer in the US each year, but, like all cancers, you want to catch it early.

For me, this is my second cancer diagnosis. The first was Hodgkin's Lymphoma as a result of the Remicade and 6-mp I was on at the time. I kicked that cancer's ass and I'm planning on doing the same with this cancer.

Anyway, I'm nervous about finding out about my treatment today because I think radiation (usually part of the treatment) is counterindicated for Crohn's disease. Usually they do a combo of chemo and radiation, which is way better than what they used to do—remove the whole anus and give the patient a colostomy. I would appreciate you all crossing your fingers that they don't have to do that for me.

Alright, enough venting, thanks for reading. I just had to get that out this morning so I could focus on getting everything done that needs to happen today.
 
I'm crossing my fingers and toes for you, Aaron! Keep us updated when you find out what they will do.

I have already had my fistulas biopsied, they showed nothing, even came back negative for crohns. Go figure.

Had my third loading dose of Remi today, next week I'm due to see my surgeon again, to see if it is time to have my setons removed. (Also blue, btw.)
 
@AaronMSB Hi Aaron, sorry to read about your diagnosis. I can't offer any advice because you seem to have been through it all. And then some.

I wish you all the best, fingers crossed.
 
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@AaronMSB, I am so sorry to hear of your diagnosis. If you beat it back before, you will do it again. Thoughts and prayers are with you.
 
AAron, I am so very sorry to hear you about your development. I will pray for you.

I am not a medical doctor. So when I got my anal fistula in late 2013, I decided to read and understand everything known about this disease from the published medical papers - I had access to PubMed at that time. There was a resounding theme that I found it to be common among the papers I read. That theme is,

1) Anal fistula is rarely cured completely by medications and AB alone. Surgery is the treatment of choice.
2) Low-anal fistula patients are usually home after a lay-open fistulectomy.
3) High-anal fistula patients are in it for a long time and undergo multiple fistula-repair surgeries (LIFT, ERAF .. etc). The success rate of fistula-repair surgeries is very low in the USA for high-anal fistula patients. Even if cured, chances of recurrence over a long follow-up period is significant.
4) Most fistulas do not turn cancerous but it is always good to find a cure, even if you have to undergo repeated surgeries.
5) It is always better to go to a CRS in an university setting.

Upon learning about this disease and the low cure-rate, I felt doomed. There was also a storm going in my personal life at that time - wife decided to dump me since she decided that I will never get cured and I am going to be burden on her for rest of my life.

That is when I uncovered KshaarSutra, an Ayurvedic treatment, available only in India. The surprising parts about the KshaarSutra were two:

1) There has been a steady stream of patients going to India from countries like USA, Australia, UK, and some European nations, and coming back totally cured. However, these patients did not publicize this treatment very well.

2) Multiple CRS in the USA, including the famous CRS who treated me, knew about the availability of this treatment, but were (and still are) not allowed to discuss this treatment with their patients.

I methodically researched this treatment. After lot of digging and researching, I found papers published in western medical journals, about this treatment. One such paper is this.

Finally I made my journey from California to Bangalore, stayed in India for 6 months, and came back to California totally cured. After I returned, I approached many CRS in the USA to bring this treatment to USA through clinical trials, but none is willing - they are all too busy. I have documented my story in a blog.

It is my hope that one day this treatment becomes available in western countries and until then, patients do not fear making the journey to India to get rid of this disease from their life.
 
Devera said:
I'm crossing my fingers and toes for you, Aaron! Keep us updated when you find out what they will do.

I have already had my fistulas biopsied, they showed nothing, even came back negative for crohns. Go figure.

Had my third loading dose of Remi today, next week I'm due to see my surgeon again, to see if it is time to have my setons removed. (Also blue, btw.)
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Mine is also negative for Crohns...but I've been diagnosed with Fistulizing Crohns..
 
AaronMSB said:
From the "It Could Be Worse" Department.

In August I got fed up with a persistent perianal infection in my fistulas. I went to the Mayo Clinic in Rochester, MN to get checked out. They did all the tests and scans and then put me under to do an exam under anesthesia as well as take out and put in some setons (I had two from a previous trip to Mayo that needed to be replaced).

I came home, started Entyvio and waited. My infections didn't go away and the inflammation just got worse and worse. After a couple visits to my GI here in Austin, I went to a colorectal surgeon to see about another couple of abscesses I had brewing.

He became concerned about a mass, thinking that it might not be an abscess of inflammation. Turn out, he was right.

Anal Cancer.

Not sure on the staging or treatment yet, but I want this to be a lesson to all of you. If you've had persistent fistulas for more than 5 years (been 10 years for me) you should have a biopsy if you have issues. This wasn't on my radar and it's clear that it wasn't on the radar of my GI in Austin or the GI or surgeons at the Mayo Clinic.

I'd say if you ever have to go under for seton placement, exam under anesthesia, or incision and drain, have them do a biopsy, just in case. There's only about 4,000 cases of Anal Cancer in the US each year, but, like all cancers, you want to catch it early.

For me, this is my second cancer diagnosis. The first was Hodgkin's Lymphoma as a result of the Remicade and 6-mp I was on at the time. I kicked that cancer's ass and I'm planning on doing the same with this cancer.

Anyway, I'm nervous about finding out about my treatment today because I think radiation (usually part of the treatment) is counterindicated for Crohn's disease. Usually they do a combo of chemo and radiation, which is way better than what they used to do—remove the whole anus and give the patient a colostomy. I would appreciate you all crossing your fingers that they don't have to do that for me.

Alright, enough venting, thanks for reading. I just had to get that out this morning so I could focus on getting everything done that needs to happen today.
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Thinking of you!
 
So I have read somewhere that Perianal abscesses and subsequent fistulas often predate the diagnosis of CD in most patients. Something like only 5% of Perianal abscesses and complex fistulas are non attributable to underlying CD. In terms of diagnosis something like 40% are diagnosed with 1 year with 50% in years 2-5 and the balance post 5 years. Of course during the diagnosis confirmation many things can come back negative. Until they catch it!

@Aaron - best of luck.
 
Needananswer said:
So I have read somewhere that Perianal abscesses and subsequent fistulas often predate the diagnosis of CD in most patients. Something like only 5% of Perianal abscesses and complex fistulas are non attributable to underlying CD. In terms of diagnosis something like 40% are diagnosed with 1 year with 50% in years 2-5 and the balance post 5 years. Of course during the diagnosis confirmation many things can come back negative. Until they catch it!

@Aaron - best of luck.
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@Needananswer I agree with Aaron. I've read extensively when initially diagnosed with CD which manifested itself as Perianal Abscesses & Fistulas. I avoided Biologics for 2 years because I wanted to believe I was an anomaly. After significant reading of resource material, perianal abscesses, fistulas but still no CD evident in colonoscopy tissue samples I finally decided I had better begin Biologic treatment. In the interim the stress of wondering when or how many more abscesses would develop was also very difficult. The problem with my abscesses is that they were followed by fistula tracts which were followed by EUA & seton placements...A really continuous cycle of constant surgeries..
 
Jay Woodman said:
@Needananswer I agree with Aaron. I've read extensively when initially diagnosed with CD which manifested itself as Perianal Abscesses & Fistulas. I avoided Biologics for 2 years because I wanted to believe I was an anomaly. After significant reading of resource material, perianal abscesses, fistulas but still no CD evident in colonoscopy tissue samples I finally decided I had better begin Biologic treatment. In the interim the stress of wondering when or how many more abscesses would develop was also very difficult. The problem with my abscesses is that they were followed by fistula tracts which were followed by EUA & seton placements...A really continuous cycle of constant surgeries..
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Hi Jay - that sounds exactly like me situation. Since April 9th this year I've had 5 PA of which 3 turned into Fistulas. The 3rd one being a right little so and so as it developed Necrotizing tissue infection! I still have no former CD diagnosis although GI has spotted inflammation in the last part of my stomach and abnormal blood markers.

It's an odd one as my abscesses have been relatively good this past month or so however I can sense one brewing right inside my rectum. Can an abscess form inside rather than present on the outside? All the usual symptoms accompany me such as abdominal pains, nausea, muscle aches etc. ho hum.
 
Needananswer said:
Hi Jay - that sounds exactly like me situation. Since April 9th this year I've had 5 PA of which 3 turned into Fistulas. The 3rd one being a right little so and so as it developed Necrotizing tissue infection! I still have no former CD diagnosis although GI has spotted inflammation in the last part of my stomach and abnormal blood markers.

It's an odd one as my abscesses have been relatively good this past month or so however I can sense one brewing right inside my rectum. Can an abscess form inside rather than present on the outside? All the usual symptoms accompany me such as abdominal pains, nausea, muscle aches etc. ho hum.
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As I understand abscesses can also form inside the rectum : ( I was so,so hesitant to start a Biologic. But as I understand this can get much worse before it gets any better : ( So, after much deliberation, anxiety & stress I started my Remicade : (
 
Lady Organic said:
@ Jay Woodman :
did you develop new abscess or fistula since Remicade?
has it helped closing a fistula?
thank you for your inputs.
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@LadyOrganic ..This has been such a difficult & long journey for me.... Several EUA & seton placements.. Yet fistula tracts that are so sore & irritating.....I'm on Remicade since fall 2014...I've one fistula that has closed : )) The second fistula has been very challenging. It was so, so sore even with a seton placement. My new CS did a recent EUA & found another tract with the same exit fistula point so the current seton was inadequate. Another seton is now in place. Two different internal entry points but the same external exit point... I'm hoping this will solve the current uncomfortable inflammation state I was experiencing. I'm waiting another 6 months before the CS will remove both setons to see if they will close : ( Such a difficult journey now since 2011 ( approximately?) Abscesses seem to manifest & initiate a very long & difficult healing journey ...
 
erinjayee said:
Hi all.
I had my first ever seton placed 2weeks ago exactly. (its a pretty blue colour). I was wondering - has anyone ever had their seton sutured in - I am pretty sure mine is sutured to the skin just at the 'exit site'. I cant move the seton string or wiping it sometimes gives me that "pulling" sensation. It also looks like its starting to leave a little pressure wound where the knot is sitting against my skin.
I see my surgeon on Wednesday - will he take the suture out?
Also - Im still having heaps of smelling pus drain from it. I change the gauze every time I pee - so like 2-4hourly and theres always about a 10c (aussie) piece sized ooze.
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Mine is neon orange and was placed a week ago. I don't think mine is stitched in, although hard to tell. Very painful to go anywhere near it at the moment. Draining quite significantly. Wanting to feel positive about it, but quite desperate at the moment.
 
I know there is a separate group for diet, but as it relates specifically to PA Crohn's, has anyone followed a specific diet that was helpful? I did do a Whole 30 back in January. I felt good, but it did not help my PA disease. I've been visiting family in TX this week, and as you can imagine, the diet here is not very conducive to healing! I've noticed increased symptoms since I've been here even though I'm trying not to partake in all of the food available.
 
Peri-anal Ron

HeyGABoy- at least you got to go on your trip! :) sorry, not heard of any diets that would be helpful.

@justwannafeelnormal. Hang in there. I remember feeling pretty desperate the first few weeks after getting my seton in place. It will get easier. Neon orange, hmm. Wondering if that's an improvement on surgical blue/green or not. I want a purple one. Or silver. Using 'want' in the loosest sense of the word.
 
I have had severe to moderate corhns for 17 years and last month noticed pain and a bump to the right of my belly button. Found out through a CT that it was an abdominal wall abscess and possible fistula. Had the abscess drained and tube put in. After a couple days the draining slowed down to 5 ml but I noticed red and tender next to belly button. Then a white pimple formed and ended up bursting. There was a lot of draining including some food in the draining like peas,carrots and beans. I was on linzolid,and flyconazole for the bacteria in the abscess. But had been on cypro and flagy a week before but taken off. I am now back on the other two and the draining has slowed a lot. Ive been on prednisone for many years and now my gi wants to try humira to heal the fistula once the abscess infection is under control. I was just wondering if anyone has had any luck with this type of fistula healing with humira? And if it stayed healed?
 
Hi matt82 I've heard that humira and remicade are the best medication to be on to heal a fistula. Most people I have asked for advice from are on those medications and have a much higher success rate of a fistula improving than others. I'm currently on pentasa and azathioprine both of which are good for my bowel but neither for my fistula! I had a seton placed on 20th October and it's still painful and uncomfortable- I see my surgeon at the end of the month and I'm hoping for a possible medication swap. Has anyone been successful just having a seton and no medication?
 
Abbynormal said:
Hi matt82 I've heard that humira and remicade are the best medication to be on to heal a fistula. Most people I have asked for advice from are on those medications and have a much higher success rate of a fistula improving than others. I'm currently on pentasa and azathioprine both of which are good for my bowel but neither for my fistula! I had a seton placed on 20th October and it's still painful and uncomfortable- I see my surgeon at the end of the month and I'm hoping for a possible medication swap. Has anyone been successful just having a seton and no medication?
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I have had problems before with fistulas that have caused bowl to get all matted up. Had a 14 cm 10 years ago and was able to clear it up with iv antibiotics and Iv prednosione. But this time the abscess had formed in my abdominal wall and the fistula opened up after the abscess was drained. Now today I've actually started feeling a bit better. Have more energy and there is a lot less draining. And as far as my corhns symptoms go I've had none which I found really weird. Had some pain in the area for several months but nothing that I thought was all that bad. I just find it hard to believe that two weeks ago there was chunks of food coming out of a hole and lots of draining and now not very much draining and I'm feeling a bit better today. Has anyone ever had a fistula just heal with antibiotics? I'm on linzolid, fluconazole, cypro, flagy, and prednisone.
 
Abbynormal said:
Hi matt82 I've heard that humira and remicade are the best medication to be on to heal a fistula. Most people I have asked for advice from are on those medications and have a much higher success rate of a fistula improving than others. I'm currently on pentasa and azathioprine both of which are good for my bowel but neither for my fistula! I had a seton placed on 20th October and it's still painful and uncomfortable- I see my surgeon at the end of the month and I'm hoping for a possible medication swap. Has anyone been successful just having a seton and no medication?
Click to expand...


Hi Abbynormal,

I don't want to be discouraging, but I've had a seton and was on Humira. They said everything was fine and removed the seton. I continued on Humira. Within about 4-6 months, I abscessed again and had surgery with seton placement. They then put me on Entyvio and 6MP. Within 3 months, I was in the hospital with severe abdominal pain. Then, in October, about 6 months later, I abscessed again.

I'm now going for a second opinion on Friday. I'm not sure how successful anyone can be with just seton placement. My understanding is the inflammation has to be brought under control or you will continue to have problems.
 
I'm in tears reading your stories. So sorry for what people have been through. I came on for support with a stubborn fissure (this is actually the very first problem I had which has led to a Crohn's diagnosis). I feel grateful that this is my biggest problem right now and I really hope I continue to be so lucky. Sending much love and thoughts to you all going through fistulas and abscesses, sounds like hell.
 
Good news - finally! Had a follow-up with my CRS today after getting the three loading doses of Remi. She was very positive. The surrounding tissue had now normalized, my fistulas seems to be healing, and I had my setons removed. Fingers crossed I won't abscess again without them!
 
Devera said:
Good news - finally! Had a follow-up with my CRS today after getting the three loading doses of Remi. She was very positive. The surrounding tissue had now normalized, my fistulas seems to be healing, and I had my setons removed. Fingers crossed I won't abscess again without them!
Click to expand...

Awesome. Glad things are going well. Keep the good news coming.
 
Devera said:
Good news - finally! Had a follow-up with my CRS today after getting the three loading doses of Remi. She was very positive. The surrounding tissue had now normalized, my fistulas seems to be healing, and I had my setons removed. Fingers crossed I won't abscess again without them!
Click to expand...
Great news.
 
Devera said:
Good news - finally! Had a follow-up with my CRS today after getting the three loading doses of Remi. She was very positive. The surrounding tissue had now normalized, my fistulas seems to be healing, and I had my setons removed. Fingers crossed I won't abscess again without them!
Click to expand...

Good luck Devera, I'm following your progress because I see my Specialist on Monday & I think there's every chance I'm going to put on Remicade.
Best Wishes
Grant
 
Hi all,

Went for the second opinion today. We decided several things: first, I a, switching from Entyvio to Remicade as that is apparently better for PA fistulizing disease; second, I'm going for a pelvic MRI with contrast; third, I'm going to a new CRS at Mt. Sinai.

My questions are I see some of you are on Remicade. Any bad side effects when you started? My understanding on the pelvic MRI is that they are going to do contrast dye through the rectum. Anyone with experience with that? Painful? Thanks in advance guys. It is so hard to get through all of this and this forum provides so much support.
 
I've been on Remicade for just over one year with no issues.
It's put me in remission (no fistulas with this recent extended flare).
 
GABoy said:
Hi all,

Went for the second opinion today. We decided several things: first, I a, switching from Entyvio to Remicade as that is apparently better for PA fistulizing disease; second, I'm going for a pelvic MRI with contrast; third, I'm going to a new CRS at Mt. Sinai.

My questions are I see some of you are on Remicade. Any bad side effects when you started? My understanding on the pelvic MRI is that they are going to do contrast dye through the rectum. Anyone with experience with that? Painful? Thanks in advance guys. It is so hard to get through all of this and this forum provides so much support.
Click to expand...
I was on it for over four years and has folliculitis which is rare.
 
Sorry to hear what you are going through... As for the pelvic MRI it is completely painless and easy. They give the contrast via IV and then you just lay on the MRI table and it moves back and forth.
I don't like enclosed spaces so I did not like that aspect however other than that it's very easy. Are you talking about Mt Sinai in NYC or another?
 
kel3333 said:
Sorry to hear what you are going through... As for the pelvic MRI it is completely painless and easy. They give the contrast via IV and then you just lay on the MRI table and it moves back and forth.

I don't like enclosed spaces so I did not like that aspect however other than that it's very easy. Are you talking about Mt Sinai in NYC or another?
Click to expand...


In NYC. Saw Asher Kornbluth yesterday. He referred me to Randolph Steinhagen.
 
Urghhhh!!! I was going to come on here this morning and proclaim that after 2 months on Humira, my fistula was healed! Tonight I was at my son's basketball game, sitting on wooden bleachers, when I felt the unmistakeable pain and achiness.....she's backkkkkkkkk. Wahhhhhhhhhhh.
 
I can't remember....don't they give you the contrast to drink before the pelvic MRI? That may have been the enterography? At an rate, GAboy, that drinkable contrast was the only issue I had and you may not get it. I had abdominal cramping from it. I just let the medical staff know that it upsets my stomach and they did something else for me, I believe. Best wishes to you!
 
I have a abscess that drains through a tube and also drains out another spot. Every once and a while I'll feel air come out of the whole with no drain in it. Has anyone one else ever had this happen? My abscess is just right of belly button. I'm thinking it may be caused by a fistula
 
Hi,
Ive had that before.
It's a sing of a fistula. Definitely let the doctor know.
 
Hi All,

Thanks for all the info on the pelvic MRI. It was just IV contrast. I don't know where I got that the contrast was given rectally. I was quite relieved when it was just IV contrast.

I followed up with the surgeon the next day. Interesting enough, the MRI showed only one fistula. My prior surgeon told me there were 2. The surgeon felt, for now, there was no need for another EUA. I'm thankful for that because he is out of network and I have no out of network benefits until January.

We talked about the fact that the fistula hasn't healed in two years. He wants me on Remicade for a little while. He said if everything is under control, he would consider doing an endorectal mucosal advancement flap. He said he is having a 75% success rate with patients with Crohn's.

Has anyone had this procedure? Succesful? Recovery time? Thanks in advance.
 
I had the advance my flap surgery a year and a half ago. I don't have crohns and had 3 setons. Mine was successful. I wrote my story under the "fistula success stories" I want to say healing time wasn't too bad.
 
Hello, everyone. I haven't been diagnosed with Crohn's or anything yet, but I think I have at least one fistula and thought I'd check in. Recently I've found stool in my vagina and urine in my butt--TMI, but this seems like one of the few places I can talk about this. I have some discomfort in those areas and am now having a hell of a time peeing, in addition to the severe constipation that's going on.

I had a CT scan about a month ago that came up clean, but from what I gather it's possible to have a fistula that isn't picked up by a CT? I only started having fistula symptoms until after the scan, anyway.

So I'm having a barium enema and fisulogram in a few weeks. Hopefully that will tell me more, but in the meantime I was wondering if this sounds like anyone else's experiences.
 
Hi CatLady,

Sound familiar (not the same in my case).

I've had them from my intestine to abdomine and bower to butt cheek.

I hope you get some answers.
Sending you my support.
 
GABoy said:
We talked about the fact that the fistula hasn't healed in two years. He wants me on Remicade for a little while. He said if everything is under control, he would consider doing an endorectal mucosal advancement flap. He said he is having a 75% success rate with patients with Crohn's.

Has anyone had this procedure? Succesful? Recovery time? Thanks in advance.
Click to expand...

I had an unsuccessful advancement flap/lift hybrid procedure prior to my diagnosis, and if Remicade doesn't close up my fistulas on its own, my surgeon has confidence that another one will do the trick now that I am on treatment. Took me 4 weeks before I was able to go back to work, and even then, I walked a little funny for a while. Fingers crossed for you! :)
 
Devera said:
I had an unsuccessful advancement flap/lift hybrid procedure prior to my diagnosis, and if Remicade doesn't close up my fistulas on its own, my surgeon has confidence that another one will do the trick now that I am on treatment. Took me 4 weeks before I was able to go back to work, and even then, I walked a little funny for a while. Fingers crossed for you! :)
Click to expand...


Thanks. It is tough for me to be out 4 weeks. Just started my own law firm and that's a long time to be on (or off) my butt!
 
Hello people, I have crohns and a recto vaginal fistula with a seton stitch in place, I have an ilieostomy . Today I have experienced complete urinary incontinence ? For all of the day , I have no pain or feeling I need to go it just happens , I am scared it may be a bladder fistula or could it be something else , it is embarrassing and extremely worrying as I have had no symptoms like this before , do I need to call a doctor , please help if you have any ideas or have experienced similar :sign0085:
 
GABoy said:
Thanks. It is tough for me to be out 4 weeks. Just started my own law firm and that's a long time to be on (or off) my butt!
Click to expand...

You might be back before I was then, I am on my feet all day. Would probably have gone back earlier if I had a job where I could sit. Good luck with your firm!

Diver jude - yes, I would definitely call a doctor!
 

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