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04-15-2014, 12:51 PM   #1
Elizajp
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Seton drain questions

A week ago I was in the hospital for a perianal abscess. They drained it and put in a seton drain. Here are my questions:

1. Is it normal for it still to hurt real bad? It doesn't hurt if I'm just laying down (finally!) but I can't really walk at all and when I go to the bathroom it is EXCRUCIATING- like screaming pain. When does it get better?? I want to walk again! I'm cleaning well, sitz baths, calmoseptine. It just burns so bad whenever anything comes out or when I walk. I'm taking Tylenol and tramadol which both seem to make no difference.

2. Okay this is TMI but when I have a pad in the drainage is usually red/brown/yellow mucusy stuff but when I'm on the toilet or in the bath these like pieces of stuff come out. It looks like flakes of stool. I don't know. Is this normal? To have like dried flake things come out? Does it stop?

3. I am currently on Levaquin and Flagyl and tapering off 40mg prednisone. The doctor wants to start me on Remicade. I know that realistically I will probably need Remicade, but I'm also looking for any success stories of people who healed abscess/fistula without it. Up until now I had been gluten free, very healthy, managed well without any meds. Now I'm doing paleo/scd and trying to cram whatever natural remedy I can in. I've heard of oil of oregano. Is there anything else? I know Remicade may be a godsend but it would also be awesome to avoid it.

Thanks!
04-15-2014, 01:02 PM   #2
nogutsnoglory
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Sorry to hear about your pain. Yes, the pain 1 week post op is normal, it takes a while till you feel comfortable sitting again. I lied down a lot due to the setons. You are doing the right things to help expedite healing.

It's normal to have nasty stuff drain out but the pieces sound odd so I am not sure about that. If you have excruciating pain, fever or excessive bleeding please call your surgeon or goto the ER.
04-15-2014, 01:38 PM   #3
justbreathe8
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Yes, alot of pain is normal, I think it took 3 or 4 weeks till I started to feel semi better and about 6 weeks till I felt alot better. I had the flakes too. When you have a BM, even when you think you wiped well enough, stool tends to get stuck on the seton or between it. I think the flakes are just what comes off when you soak it, aka, it really gets clean. Also, the warm water is supposed to pull out stuff (kind of like when you use a hot compress on a blemish) so maybe that's what it is too.
04-15-2014, 01:42 PM   #4
Elizajp
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Okay good to know this all seems pretty standard! Looking forward to feeling better soon. Oh and one other thing- when I go to the bathroom it seems to come out both my butt AND the seton and it HURTS when it comes out the seton. Please tell me this gets better! Is there anything I can do for it?
04-15-2014, 01:51 PM   #5
nogutsnoglory
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It does get better and it just takes time to heal and adjust to the foreign object that's now there.
04-15-2014, 02:00 PM   #6
Elizajp
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Okay good! Makes me feel better.
04-15-2014, 02:03 PM   #7
justbreathe8
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Yah it def gets better. It used to hurt when gas came out of the seton, but it doesn't anymore
04-15-2014, 02:44 PM   #8
theOcean
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My father had a fistula back in his 30s, and his healed without any biologics. It took a very long time for him, though.

Meanwhile, I also have a fistula and have been treating it with biologics. So if you have questions about that, I can answer those too.
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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!
04-15-2014, 02:57 PM   #9
Elizajp
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Ocean- thanks for the reply! How did your father heal his? And which biologic have you used? Have you ever come off of it? If so, did the fistula come back? I really would like to avoid being on a biologic for very long- my doctor is saying it's a longterm thing, which I understand because I know if you stop and restart a lot of times you can be allergic. Is it wishful thinking that I could just treat the fistula with a few rounds of Remicade and then be off of it?
04-15-2014, 04:49 PM   #10
theOcean
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With my Dad I think it was just time. He's 75 now, so at the time he didn't have a seton and he isn't too clear on which surgeries he had. He said his burst on its own, and then he had two or three surgeries (the last one sounded like a primitive fistulotomy). He said he had it throughout his 30s, and it took him a very long time to heal but it eventually closed.

I was originally on Remicade, even before I developed my fistula because my illness is severe. I stopped it because it turned out that I was very allergic to it. Despite that, I noticed it helped a lot with my fistula for awhile -- the drainage would decrease dramatically and I would be in less pain.

Now, I'm treating my fistula with Humira. I don't get any drainage at all since I've been on Humira, so they're going to take my seton out soon. I'm not sure if you've been told about it or not, but as long as the seton is in place, it's impossible for your fistula to heal. So it's only after the seton is taken out that you'll see if it will heal or not!

So at the moment I'm not sure what my chances are, but I know that the skin around the fistulotomy area has totally healed and seems to want to heal over the seton string but obviously can't. So I'm hopeful about it.

I do think it's wishful thinking to want to treat it with a few rounds of biologic -- maybe after it's healed you could stop? But not until then. I doubt your GI would consider it unless you're in remission, too.


04-15-2014, 07:40 PM   #11
Elizajp
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Thanks for the info! Well the thing is, the prednisone seemed to have calmed down the actual crohns- so I don't really know if I would be considered in remission or not, given the seton. I guess that's what confuses me- if my crohns is under control but the seton is still draining (or not draining) would I still need remicade? Or could they theoretically cut the seton and it would just close up if the crohns is under control? So confusing!

Also, do any of you know a way to help prevent stool from coming out the seton? Or is it just kind of inevitable?
04-15-2014, 08:50 PM   #12
theOcean
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You'll have to see how you are as you taper off the prednisone, too. I know in my case that once my prednisone was low my flare would come back, so personally I needed biologics.

You need to wait for your fistula to stop draining before your GI will consider removing the seton. Mine actually ordered an MRI just to make sure, too. It might take awhile, depending -- mine was put in May 2013, and finally stopped draining at the beginning of the year. The reason my GI wanted to make sure I was in remission was because I'm pretty sure the constant BMs aggravated/caused it in the first place.

RE: stool: as the area heals it'll hopefully have less stool pass. Now the only time that happens to me is if I have a loose bowel movement, because then it's liquid enough to pass through the fistula. If my bowel movements are formed/normal, this doesn't happen. What kind of BMs are you getting right now?


04-15-2014, 11:32 PM   #13
Elizajp
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Right now they are loose but not diarrhea if that makes sense. Even when I'm in remission i always go 2-3 times a day and now I'm going like 4 times. During the height of my flare I was going every two hours even in the night- so big improvement BUT the couple of times I do go are so painful it's ridiculous. It comes out the seton and there's just so much pressure- like it feels like really urgent and gassy. I started my prednisone taper today (35 mg instead of 40.) I'm not sure what to do. On the one hand I would consider my bathroom trips almost normal especially compared to what they were but the fact that it causes this much pain is just not something I can live with! I'm also wondering if the flagyl is contributing to the looseness/urgency. I've considered going on all liquids to try to give things a rest since it hurts so bad... But I also want to try SCD and I also have lost a lot of weight so I'm just so confused! Sorry that was a lot!
04-16-2014, 02:59 PM   #14
theOcean
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It should stop over time, I promise! It's just at the beginning that it's unfortunately the worst. Are you doing anything to help deal with the pain after BMs? I use a squirt bottle to help me clean it better, sometimes wet wipes, and otherwise sitz baths (with epsom salts) help with it a lot, too. They also help it heal.

Flagyl might be contributing to how your current BMs are, but I also think staying on your antibiotics for the time-being is pretty important. I was on mine for about eight months (though it may be different for you, of course!) before my GI took me off of them. Maybe you could consider taking something to help with your stool? If you're able to, you could maybe try adding more fibre to your diet, or taking fibre supplements. There's also medication you could ask your GI about to help with it.

Ask your GI if you want to go on a liquid diet! I know it can help some people, but you want to make sure you get all the nutrients you need, too. Especially when your body is healing. I haven't looked into SCD or tried it myself, so I can't say how much that would help or not...

For weight gain: my doctor told me the trick was to eat higher calorie, rather than just eating more food.

Also, don't worry about if you're typing too much or not! I'm happy to listen and give tips where I can. I know when I was first dealing with my fistula, it was pretty scary and I didn't have much information on it either. So I hope I can help!
04-16-2014, 06:17 PM   #15
Elizajp
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Thanks for all your advice! It's good to hear that it gets better. Today was a better day! I had a lot of pain in the morning but it got better as the day went on and I was actually able to walk around a bit- hooray! I've got a baby so I'm very impatient to get back to being the Mama I need to be! It's encouraging to hear that you all get back to your lives even after all this stuff

Oh and they only plan to have me on my antibiotics for fourteen days. I didn't realize some people are on them for months! I hope that's enough? Does fourteen days seem short after an abscess?
04-16-2014, 06:28 PM   #16
theOcean
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Aw! I'm glad to hear you had a good day. You seem to be improving at a pretty good speed -- the first week is the toughest one, and after that you'll start to notice that you're getting better. It took me a week or so to get back to walking, and at a week and a half I could finally sit up again and could start to get back to my normal habits. I'm sure your baby will have you back in no time, even if you might not be at your best just yet.

I know that I'm back to doing everything I did before, so you'll definitely get there.

And wow, rather than being worried about it being too short I'd think you're quite lucky. My fistula was quite bad though, so I'm not sure how to compare. Once you're taken off antibiotics, if you feel worse, you can always ask to be put back on them for awhile. I found they really helped me initially.


04-17-2014, 04:22 PM   #17
Elizajp
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Okay a few more questions!

1. Is it normal to have a good amount of blood in the drainage? It's like a combo of brown/blood/yellow.

2. The drainage SMELLS. Does this get better?

3. I can still feel a little bump deep in my butt cheek where the abscess was. It's not nearly as big or tender and it isn't hot. But I'm just worried- is it normal for it to take a little while for the abscess to completely go down? I assume that's the point of the seton, but just making sure it's normal to still feel something.
04-17-2014, 04:33 PM   #18
theOcean
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1. Yeah, that's pretty normal at the beginning. Mine has stopped draining (AKA no more pus/mucous grossness), but occasionally I'll still get a little bit of blood just from the seton causing some irritation. It's nothing to worry about.

2. This gets better! I know it was awful at first, but as you heal and the bacteria goes away it will stop.

3. It will take awhile, since it's likely still a little inflamed. It should go away with time. When it does heal more externally, the skin might also feel a little hard, but that's normal, too. In the future, you could also get an MRI to check that everything is okay internally, but that would be when you're a little further along.
04-17-2014, 05:05 PM   #19
Elizajp
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theOcean thank you for your responses! Gives me encouragement! Now just to have the patience to wait for everything to heal
04-17-2014, 05:56 PM   #20
theOcean
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I'm glad I could help! If you ever have any other questions or worries, you could always leave another reply here or send me a PM. Here's hoping you heal quickly and can be feeling better soon!
04-19-2014, 01:41 PM   #21
Elizajp
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Okay another question!

So the pain hasn't changed much- still pretty excrutiating especially at night. But the crohns is a lot better- only going to the bathroom like three times a day and pretty formed. Here's the weird thing- throughout the day like every few hours the seton drains little pieces of stool and I can sort of tell when it's about to- but it's just weird because it's totally separate from when I go to the bathroom. I'm just getting discouraged because the crohns seems better so I wonder where this seton stool comes from and why it keeps coming out? Was it just sitting in the abscess all along? It would make sense if it were coming out with a BM but it's like a separate thing.
04-19-2014, 01:41 PM   #22
Elizajp
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Also it stings when it drains the stool! Did you all experience this?
04-19-2014, 01:47 PM   #23
justbreathe8
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From what I understand, after you have a BM stool can get "stuck" in the fistula track where the seton is, so it's just your body pushing it out instead of it getting trapped and causing another abscess. My surgeon said that with a seton, you want as firm as stool as possible because then less with get into the track. Even 3 months out, I find that if I have loose stool I experience pain and more drainage then when I have firm hard stool
04-19-2014, 02:08 PM   #24
theOcean
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Agreed with justbreathe! I've had mine for almost a year, but if I get a loose bowel movement it'll sometimes still go through the fistula and cause me pain. But that's the only time it hurts anymore. The less irritation (and less bowel movements) you get, the less the fistula will hurt you. Cleaning thoroughly also helps with that early on.
04-19-2014, 02:15 PM   #25
Elizajp
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That makes sense about it getting stuck. I guess it just weirded me out that it comes out hours later but maybe it just takes awhile for my body to push it out!
04-19-2014, 02:23 PM   #26
justbreathe8
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Yah everything about this issue is wierd! Never would I have thought I'd have 3 bright orange things hanging out of my butt! Hahahah sorry, not funny, but sometimes you just have to laugh
04-19-2014, 02:36 PM   #27
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Yeah, everything is a little alarming at first with a fistula. I'm glad you came back to ask if it was normal though! I know I used to pester my GI all the time originally about it.
04-20-2014, 10:32 AM   #28
Elizajp
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Back with another question!

I paged my doctor about these too so waiting to hear back.

It seems the pain has gotten a bit worse. It is like a steady throb and I can still feel the spot deep where the abscess was/is. It feels a little warm. But I also think it always has the whole time- I'm not sure. I'm getting a little worried that the abscess is filling up again or there's another one. It's definitely draining a lot which I guess means it's okay- but it just worries me that I still feel something there and it's warmish. I don't have a fever or anything but I still have so much pain. It's been two weeks since the surgery now. I wonder if this is normal?
04-20-2014, 11:37 AM   #29
justbreathe8
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I had one surgery and then still had pain after 6 weeks, turns out I needed another seton.... Got another one (now 2) and thought I was fine bc the pain def started getting less Fter the seton. Then turns out I needed 3. So now I have 3 and have very minimal pain. It's def possible that the abscess spread. I think the only way to tell is an exam under anesthesia. But after I got my first seton and I was telling the surgeon I was still in pain, he told me to wait 6 weeks. Then after 6 weeks I was still in pain and he finally believed me and scheduled me for another surgery. So it's good that you called your surgeon and see what he says
04-20-2014, 11:58 AM   #30
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Sorry to ambush the thread.

I had 2 setons inserted last November 2013, so it is about 5 months now. I am still in pain and still have drainage. Some days more than the other. My pain is originating from the scar tissue that formed around the seton. It looked like a blister around the seton, it fills/swells up causing the pain, once there is drainage the pain is much less. But still there is pain. I was regularly monitored for my progress and everytime I asked them about the pain, I was told I have no new abscess but scar tissues and there is not much I can do about it. The explanation they gave me was, my body is trying to reject the foreign body which is the seton. I was told they can cauterize it to make the scar tissues smaller but it may grow again for as long as I have the seton. There were days that I can feel hard lump under the seton, but when I showed it the doctor I was advised to milk it, with my finger press it sideways directing it to the seton to help it drain. And if for any reason it persists, I have to bring it back to them to be lanced. I was told again that it is possible that a new fistula track my develop even if I have a seton. Overall, after 5 months I am not even back close to normal. Are you guys totally pain free with your setons other than the discomfort? Any of you have scar tissues? If you do, what do you do it make it go away? Do you still swell up around the seton area? Sorry too many questions.....
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