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10-23-2015, 10:04 PM   #1201
GABoy
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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.


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Diagnosed with perianal Crohn's Disease: 12/2013

Surgeries:
Abscess Drainage 10/2013
Seton Placement 11/2013
Abscess Drainage + Seton Placement 4/22/2015
Abscess Drainage 10/28/2015
Seton placement 2/11/2016
Abscess Drainage 2/26/2016
Mucosal Advancement Flap 8/12/2016


Prior Medications:
Cipro, Flagyl, Prednisone, Humira, Entyvio

Current Medications:
Remicaid 6MP and Allopurinol
10-23-2015, 10:51 PM   #1202
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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
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!
10-23-2015, 11:48 PM   #1203
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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?
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7 Perianal Abscessess April 9th 2015
4 Resulting Fistula's
1 Necrotizing Tissue Infection

2 Setons in place

Medications:

Flagyl since September 2015
Imuran since January 2016
10-24-2015, 09:21 AM   #1204
Kat123
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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?
10-24-2015, 10:10 AM   #1205
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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.
10-24-2015, 11:19 AM   #1206
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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
10-24-2015, 11:35 AM   #1207
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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?
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.
10-24-2015, 11:41 AM   #1208
Kat123
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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.
10-24-2015, 11:51 AM   #1209
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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
10-24-2015, 12:00 PM   #1210
GABoy
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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.
10-24-2015, 12:27 PM   #1211
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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
10-24-2015, 01:34 PM   #1212
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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
10-25-2015, 06:11 PM   #1213
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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?
10-25-2015, 07:06 PM   #1214
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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?
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.
10-25-2015, 07:38 PM   #1215
hingrum
 
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Thank you!!
10-26-2015, 04:30 AM   #1216
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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!
10-26-2015, 11:54 AM   #1217
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Thank you, Abbynormal. It is my first surgery for a fistula. They are placing a seton
10-26-2015, 11:58 AM   #1218
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I hope it goes well for you!
It was my first surgery too- I didn't know that I was having a seton put in.
10-27-2015, 06:38 AM   #1219
GABoy
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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.


10-27-2015, 07:08 AM   #1220
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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.

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.
10-27-2015, 12:49 PM   #1221
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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
10-28-2015, 07:08 AM   #1222
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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.


10-28-2015, 01:51 PM   #1223
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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.
10-28-2015, 02:33 PM   #1224
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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!
10-28-2015, 07:45 PM   #1225
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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
10-29-2015, 11:14 AM   #1226
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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 😊
10-29-2015, 02:26 PM   #1227
GABoy
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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?
10-29-2015, 06:49 PM   #1228
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Most likely an abscess.
Are you on any antibiotics?
I would be.
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DX. Crohns 50 yrs. with fistulas for 20 years until remicade
Meds: MTX,ENTYVIO 9/14' augmentin,
pred. 10mg.
probiotics
d3, calcium, k2' magnesium, resveratrol,
Turmeric,paleo, bone broths
Past: humira no response after 6 mos., remicade amazing for 10 years then stopped working.
Entocort
6mp, Imuran never helped nasty side effects liver problems, caught pneumonia
Asacol, rowasa no response
Flagyl worked well but got PN cipro same.
10-29-2015, 08:29 PM   #1229
GABoy
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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?


10-29-2015, 09:23 PM   #1230
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I would take some probiotic.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
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