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Seton drain questions

E

Elizajp

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!
 
nogutsnoglory

nogutsnoglory

Moderator
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.
 
J

justbreathe8

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.
 
E

Elizajp

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?
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
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. :p
 
E

Elizajp

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?
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
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.
 
E

Elizajp

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?
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
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?
 
E

Elizajp

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!
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
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!
 
E

Elizajp

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?
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
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. :p 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.
 
E

Elizajp

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.
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
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.
 
E

Elizajp

theOcean thank you for your responses! Gives me encouragement! Now just to have the patience to wait for everything to heal :)
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
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!
 
E

Elizajp

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.
 
J

justbreathe8

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
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
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.
 
E

Elizajp

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!
 
J

justbreathe8

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 :)
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
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. :p
 
E

Elizajp

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?
 
J

justbreathe8

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
 
P

Polar bear

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.....
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
Polar Bear: I've had mine for almost a year now, but I've been pain free for much longer than that. I have been in remission since shortly after I got the seton put in as well, which I think has helped greatly.

You could ask your GI for an MRI if you wanted to be certain about abscesses and new fistula tracts. Getting one done was the determining factor in whether or not I could safely get my seton removed.

Also, I would regularly see my surgeon for her to check up on how the skin around the incision site was healing. She would use silver nitrate (I believe) on areas where she felt the skin was bumpy/healing improperly, and now it's normal.

I only swell up around the seton area if I have excessive loose bowel movements, but the only case where that's happened to me was my colonoscopy in February.
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
Elizajp: If it's warm it probably just means there's still some inflammation in the area. Given that it's healing, I don't think that's unusual but you should maybe keep an eye on it. Try sitz baths with epsom salts if you haven't already, because they should help with inflammation and healing, and also help it drain more.

It may be that you need to be on antibiotics a little longer. Do you get checked regularly by a nurse? When I first had my surgery, I would regularly go to a hospital clinic to get it checked to make sure it was healing properly.

I think it's still normal to have that level of pain. I was in the hospital eleven days with my fistula before I was allowed to go home, and I know it took me a little while for me to feel completely comfortable doing things again.
 
E

Elizajp

TheOcean- I haven't had anyone checking it- which has surprised me! I'm going to call and make an appointment to get it looked at tomorrow. The pain is definitely worse now so I'm thinking maybe the skin is infected or at least something is not right. Hopefully I get an answer! An MRI sounds like a good idea too.
 
J

justbreathe8

I got my first seton in October, still had pain, the 2nd in December, and didn't really have too much pain, but still a little. Got my 3rd seton on feb 4th, and I have very little pain most days. But there are days when I still have pain. Last week I spent the day crying and feeling sorry for myself because I was in so much pain. But this week I feel fine. I have found that if I drink any alchohol besides red wine, I am in pain for a few days after. And even with red wine, the next day I have a little more pain then normal. I also find that if I have a BM more then once a day, I have pain. Those days I take ib profin and a norco and that usually makes it go away. I still have a bump under my seton and the days I have more pain, the bump gets more swollen and the days I have less pain, the bump gets smaller. Not sure if that helps, but I feel like I've spent alot of time writing down how I'm feeling and what caused it so I can feel as good as possible. Not sure if that helps at all. I'm interested to see how other people feel as well
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
justbreathe8: Are you on antibiotics to treat your fistulas, as well? I was on antibiotics for eight months, and wasn't able to drink alcohol for awhile as a result... but when I came off of them, I didn't notice any correlation personally. It sounds like that's the case for you, though.

Having pain if you have multiple BMs is normal, although it's unpleasant. That happens to me some days, and it's then that I take a sitz bath and that often helps.

It sounds like it might be in your interest to see if you can get a nurse to examine you. Could you call your GI and see if that's possible? For a little while I felt like I had a similar spot that would swell up when it was irritated there, but it seems to have healed. I was worried it was maybe an infected area, but I guess not.
 
J

justbreathe8

I have only been on antibiotics for 1 week after each of the surgeries. With the last surgery I needed a pic line and had those antibiotics for 2 weeks. But besides that nothing. Yah each person is different and how their bodies react that's why I took the time to pay attention to what I eat and how I feel the next day or two. Plus, drinking often tends to make me have multiple BM the next day, so that's also why I avoid it. Sitz baths def help a ton. I notice it pulls stuff out on the days that I don't feel as good.

Yes, Eliza, def report back please! :)
 
E

Elizajp

Justbreathe- you mentioned a pic line- I realized I really didn't have much pain while in the hospital after the surgery when I was on IV antibiotics. It was when I went home and was on the oral antibiotics that I've had more pain. Makes me wonder if the oral antibiotics aren't cutting the abscess infection completely. What made you end up getting a pic line?

And I will let y'all know when I talk to the surgeon!
 
J

justbreathe8

I had to get the picc line bc the infectious disease doctor did a culture on the bacteria that they got from the abscess and that bacteria was resistant to either cipro or flagyl, I don't remember which one but I think it was flagyl. And it was also some kind of strong bacteria so the only meds that would fight it was through IV. I felt so stupid in the hospital because anyone that came in to my hospital room (I was there for 5 days) had to put on gloves and a gown, even my family. :( the bacteria was e.coli and 2 other ones.
 
P

Polar bear

This thread is very helpful. I was not on any antibiotics ever, I was told it is not going to help, but if for any reason I had a fever or chills I have to go the doctor right away. @Justbreathe08 sometime ago, on one of the threads I remembered you mentioned that Ibuprofen helped you with the swelling, I agree with that there were times when I feel my seton area is swollen, throbbing and really in pain, I will take Ibuprofen and 2 to 3 hours later, I am in happy land, the pain and swelling will go away. But.... it will return back again after a day or so and it starts all over again. I am getting kind of frustrated but what else can I do. Last week, I watched Dr. Oz and there was a segment about anti inflammatory diet. I was planning to do that, will see if it gives any relief. How much drainage do you guys are getting?
 
J

justbreathe8

Polarbear: yah I remember talking to you too. Yah, ib profin does wonders for me and I'm glad my surgeon suggested it. I usually only need it maybe once a week if I have to use the bathroom more then once. How many times a day do you have a BM? I do not have crohns so maybe that is why mine is less inflamed? But we had our setons placed pretty much at the same time. As for drainage, after I have a BM which is every morning, about an hour or two later I have brownish drainage which I can tell is stool that got I to the fistula, and then it's back to yellow again. And I have the yellowish drainage throughout the day but it gets less and less as the day goes on, then starts over again the next morning.

Ocean: you have 0 stuff come out? No stool or mucus or anything at all? So you don't need to wear gauze or anything? I've asked before I'm sure but I'm too lazy to scroll back, How long have you had your seton? And when do you get it out?
 
P

Polar bear

@theocean. I am glad to hear that you are without pain. That is something I look forward to. Please,google, dr oz, oligoantigenic diet, it discusses the 3 step process. I just saw it last week on tv, I do not if this is effective or not, but I am willing to try anything just to give me some relief. At this point, I have already accepted that I may have to live with this condition for the rest of my life, but I am looking for ways to at least feel better because I feel like crap. @justbreathe8, I have my pityparty too and I sometimes cry when I am in the bathroom wishing it is all a bad dream. Thank you guys for letting me vent..... so sorry again for ambushing this thread.
 
P

Polar bear

@justbreathe08, yes I believe we have our setons at about the same time. And I have exactly what you have, after BM brown stuff (stool), after that yellowish discharge for the rest of the day. I will have one or two good days when I feel better, then it will swell up again and I will be in pain and it is just a cycle. I am still undiagnosed up to this date, I was referred to have a colonoscopy, but I have been postponing it, till I feel a little better. I know I have been a chicken to back out of the colonoscopy but, I don't think I can deal with additional pain at this time. I know I will be out when they do it, but after I wake up that is the one I am scared of. So for right now, I wanted them to treat me like I have Crohns which is no other surgery down there other than placement of setons. I have 2 bowel movements a day, one in the morning and one in the afternoon. I do not have problems with diarrhea. My problem is with constipation. I have to take 3 to 4 pitted prunes everynight to help soften my stool, plus lots of fiber and water. I am not taking any medication at this time, other than the Ibuprofen which I take about one or two times a week when the swelling and pain really gets unbearable. I am still not able to sit without a donut pillow, and even with a donut pillow cannot sit for a long period of time, that considering that it has been 5 months already when I had my seton. When does it get better?
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
justbreathe8: Nope, nothing! Stool will only occasionally come through if I have a loose bowel movement, but I'm in remission so that's very rare. I'll have days where I maybe get a little mucous, but it's so negligible that I don't have to worry. I just wear pantyliners in my underwear just in case. No gauze. :)

I've had my seton since the end of May 2013. I'm getting it out on the 28th, though my surgeon said she was comfortable to remove it back in December. My GI was just hesitant to let her before we got an MRI done to make sure it would be safe.

Polar bear: You're not ambushing this thread, don't worry! I'm glad if it's helping you, and discussing what we're going through us good for all of us. Good luck with the diet. :)
 
P

Polar bear

@theOcean So, when they remove the seton what happens next? Are they going to do anything like a plug, a glue, lift or because the inflammation is no longer there it will soon heal by itself? Are they going to put you on any medication once the seton is out?

Thank you guys for sharing your experiences, its really helpful.
 
P

Polar bear

@theOcean I noticed on your signature that you are currently on Humira. How long are you supposed to take Humira? Is this something you can start and then stop once the fistula has healed or it has to be taken continuously?
 
E

Elizajp

Polar bear- don't worry about ambushing! I know I can seriously can use all the seton thoughts and experiences and advice I can get! In terms of my drainage (I've only had mine two weeks) I get constant yellow mixed with blood. I also get pieces of stool. And also these weird little black thread looking things... Don't know what that is!
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
Polar bear: Once they remove the seton they're going to see if it heals on it's own. My MRI came back perfect, so I don't have any inflammation or infection. I'm just going to stay on the same medication I'm on now. I've heard really great things about Humira helping close some people's fistulas within days once they got their seton removed.

And yep, I'm on Humira! For me I'll be on it indefinitely because of the severity of my illness. Originally the plan was that I was just going to be on Imuran, and then went on Humira to treat my fistula more aggressively, but I'd rather stay on it given my history. Apparently with Humira you can try to stop it and go back on it later, and it will sometimes work -- but it also might not. Remicade there's no chance of going back on it later, though. So stopping it afterwards could be an option if you'd like. I talked about it with my GI before as well before I started it.

Also, even if it didn't work for you again later on, there are always other biologics to try. Remicade, vedolizumab, cimzia, Simponi... They're constantly coming out with more, so I feel pretty reassured by that. :D

Elizajp: The little black threads might be from your seton! I've looked at mine before and can see how it's a black thread sticking out.
 
J

justbreathe8

@polarbear- i was terrified for a colonoscopy too and put it off bc there was no way I could deal with the pain of having D for hours. So when I was going in for surgery at the beginning of Feb, he suggested I do it then because I was going in for surgery anyways so he'd be able to clean out the fistulas while he was in there. So it ended up working out and not being TOO painful. I took a norco and IB profen before I started the prep. I think that helped a lot. I think if I had 2 BM every day, Id still be in as much pain as you are, because the days that I do, are the days that I have pain. Maybe thats why you are still in pain 5 months later? Do you take probiotics? I wrote this in another thread a while back, but Before I had any seton surgeries (I had only had a fistulotomy) I saw a naturopathic doctor because I thought maybe I was doing something wrong. She recommended a probiotic and I feel like it has helped me a TON. I now only have to go to the bathroom once a day where before it was 2 or sometimes 3 times a day. I also have about 1/3 cup of greek yogurt in the morning as well as vitamins. Im not 100% sure that these are the things that have helped, but I will continue to do them just in case. I hope you start feeling better soon! This thing is so brutal! :(

@ocean- thats awesome that you don't have any drainage! that must make you feel so much better! And you have got to be so excited to get them out this month!! Please come back and update because there are not much info here about what happens once the setons come out!

eliza- do you eat bananas? This is gonna sound weird, but if you do, I bet you the threads are banana fibers that come through the seton. Go a couple days without eating bananas and it should stop. I used to get those and it freaked me out so I did some research and figured out it was banana fibers. The middle of the banana has those squiggly things. So now when I eat a banana I just cut around the middle and only eat the outside, and now I have no more thread things! :)
 
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Elizajp

Justbreathe- I DO!! So many haha! They've been my go to food lately and so that makes so much sense about the threads! That's crazy but makes sense!
 
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Elizajp

Another thing- it seems you all have found a pattern to your seton pain. I can't seem to find any sort of pattern except that it's always worse at night and the morning. Regardless of food or when I use the bathroom. It's just always terrible at night and in the morning. Do any of you experience this?
 
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justbreathe8

Then thats totally bananas!! I got so worried it was worms or something crazy so I spent some time researching it and then not eating bananas, and then eating bananas again and it is FOR SURE the banana fibers! lol, so crazy. I actually have the opposite, mine is feels the best at night and when I wake up. I could see why maybe it would feel worse at night because you've been standing or moving around all day but I would thing that after giving it some rest and laying down all night for bed that it would feel better in the morning. So I'm not really sure why you feel the worst at night or in the morning? Maybe if you try a few days of writing things down, like what you eat, or your activity, and throughout the day how your seton feels, maybe you might see a pattern?
 
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Elizajp

So funny about the bananas. I was worried about worms too! Yeah I probably should start writing down the pattern- it's just hard because there are so many different factors!
 
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Elizajp

Oh and also- just to get an idea- what kind of pain did you all experience in the first few weeks? I know a lot of pain but just want to make sure my "a lot of pain" is normal. I can't walk without pretty bad pain, can't sit. Can only lay on my stomach or side and then I will have moderate pain. I can't pick up my baby, can't pick up much of anything. Sound normal two weeks post-op?
 
J

justbreathe8

Yah I know! There are so many factors! But it's worth a try! Yes that pain sounds normal. My first seton in October was hell. I could barely walk upstairs, or do anything except for lay in bed. It hurt to even move for the first 2 or 3 weeks. Even laying down with my husband I remember keeping saying, don't roll too close to me bc it hurts! Lol so yah I think lots of pain still is normal. I spent lots of days sitting on the Internet reading this forum and every ones stories trying to figure out if what I was going through was normal. And I also made several trips to the surgeon to see if what I felt was normal
 
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justbreathe8

Did you have the fistula when you have birth? My husband and I want to get pregnant, I wanted to be pregnant already by now, but then this stuff happened so we decided to wait until after I get the setons out hopefully in September.
 
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Elizajp

Just breathe- so comforting to hear! Haha I'm the same way I'm always telling my husband to scoot over so nothing touches me! So yours started getting better after 3/4 weeks?

And no, I didn't have the fistula during pregnancy or birth. I actually was in totally remission during pregnancy- no meds or anything. Other than morning sickness I actually probably felt the best I've felt in my life. I've heard that pregnancy acts like a natural steroid on your body so sometimes it makes the crohns calm down! Hopefully you may find that happens for you! On the flip side though, the stress/lack of sleep of the first months postpartum may well have been what put me in this current flare which is far worse than any I've ever had. So whenever you do have a little one- take the advice everybody gives and sleep when the baby sleeps!
 
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justbreathe8

Yah I would say I started feeling better after 3 or 4 weeks. But even then I had another fistula that formed so I never felt REALLY good until a few months later when I got my second and third seton. So maybe someone else who only has one could better answer how they felt :)
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
justbreathe8: I'll definitely update about it! I know I was hunting around for people who had them taken out, but they didn't have too much to add. So I might make a thread about it when I do to track progress. :) Just one more week!!

Elizajp: Mine was always the worst directly after a bowel movement, I found. If I ended up walking/running directly after one, even now, I'd get some chafing from it too. (Another reason why I can't wait to get mine out.) Otherwise sitz baths and showering have been really good to me for lessening any pain when I felt it more actively.

My initial pain was pretty bad, but my fistula was also pretty terrible since it almost went all the way up to my stomach. I was also experiencing the worst flare-up I'd ever had. It took me into my second week to be able to sit up on my own, and maybe another two weeks or so before I could sit more comfortably and not worry about applying pressure as much. It was within that first month I was starting to walk again and getting active.

I also couldn't pick up my cat at first, who is about 15 pounds. :p But that's just because I was bedridden for awhile and had to gain some strength back.
 
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Elizajp

Just an update- got back from the CRS. She said everything looks fine- no new abscesses or anything. She said it's just a bad fistula and it's going to hurt for awhile. They want to start me on remicade on Wednesday but I've had indeterminate TB tests (they think from the prednisone.) I'm also doing SCD and the crohns is currently pretty under control. So kind of confused about what to do next. I also finish my antibiotics today which makes me a little nervous. We will see!
 
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Elizajp

I'm glad too! And thanks! My big concerns now are the indeterminate TB test (they said they will just monitor me as it's unlikely I have TB) and I just have high hopes that maybe I could kick this thing with diet... although I know that's probably wishful thinking. We'll see!
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
Well, if anything, Remicade and Humira are both good for treating fistulas. So while diet may help with your Crohn's, this should hopefully treat your fistula faster and help with drainage.
 
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Elizajp

Finally starting to feel some lessening of the pain! Still can't walk really but as long as I'm laying down I don't really feel it- yay!!!
 
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Elizajp

So I am scheduled to start the remicade tomorrow. I'm starting to get really nervous. The surgeon said everything looks normal and is healing well but I'm just paranoid about how much pain and drainage I still have. I'm paranoid that the abscess infection is still there despite the seton and the remicade will make it worse. My antibiotics course just ended. Did you all still have pain and lots of drainage when starting a biologic? Should I not worry considering I have the seton draining everything?

Also, I'm paranoid because my crohns symptoms are so much better- it makes me feel like I don't need the remicade yet. But my doctor says I really need it to heal the fistula. Ugh I'm so confused! How will I know if it's working? Will I see a decrease in drainage? Decrease in pain?
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
The Remicade will make it better, I promise. Even if it doesn't end up being effective for you, it certainly won't make it worse. :hug:

I had a bit of pain when I stopped my antibiotics, but that went away soon. When I had my first infusion of Remicade since having my fistula operated on, I instantly had way less pain and drainage and felt a lot better. It was even better with Humira because of the frequency (once a week) and not being allergic to it. :p

I was into remission already when I started Humira, and so I monitor how I'm doing by how my fistula is acting. You'll notice a difference in drainage, definitely. (A positive one.) It will drain less and also help with pain, or at least it did for me!

Good luck!! :hug: You will be okay, if not even better than you were feeling already!
 
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Elizajp

Wow!! Just had to give an update- just one day post remicade and I can move and actually walk with minimal pain! And the drainage has decreased significantly. Thank God for remicade!!
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
I'm so glad! I was still on Remicade back when I had my fistula operated on, and the first infusion did wonders for me, even when I was really allergic to it. Suddenly I could sit and move and the transformation was so miraculous that my doctors finally let me go home. :)

I hope you continue to feel even better from here! :hug:
 
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Elizajp

Okay so the remicade made a huge difference. Much less drainage and much less pain!

Sorry I keep asking but I just want to check up and make sure my current status seems normal! I still can't walk very well. Towards the end of the day I can pretty much walk and do things without much problem or pain. It's still pretty painful to walk in the morning- I imagine this is related to going to the bathroom in the morning. It doesn't hurt to go, but I'm very sore for a few hours afterwards. I am starting to get out and about, which is great! But the pain when walking and the difficulty sitting is still there. It's been three weeks now since the surgery. Getting remicade again in a week and a half. Does this all still seem normal?
 
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Elizajp

Oh! Also meant to ask about exercise. I can't seem to figure out if moving around makes the pain better or worse. Either way, I really want to get back to exercising- pretty gentle things like yoga and Pilates and walking. What experience do you all have? When did you get back to exercising? Did it help or hurt?
 
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justbreathe8

Yah that sounds normal to me. I still have pain sometimes and today Im waddling around because it hurts lol. I also still can sit fully. I didn't realize this until I tried to go on a motorcycle and because I wasn't able to adjust how I was sitting, it made riding very difficult. I waited to exercise until I felt close to normal. I was too scared I would hurt it. But I did try to go for walks around my neighborhood or on my treadmill just so if be doing SOMETHING other then sit on the couch.
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
It's related to going to the washroom in the morning, yes. Eventually as it healed more I found that passing a BM wouldn't affect it or cause pain. It just takes time. :) Sitz baths or showering helps.

And I've actually even started working out with a personal trainer! So as long as you get to a point where you're comfortable you can definitely start exercising again. I just find that too much walking/running causes chafing from the seton, though.
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
I did!! I made a thread about it here, so I could keep a record of things that other people can look at later, too. :) So far it's been going pretty well! The seton would keep causing a fissure for me from chafing so now I think it can finally heal. I'll be much more comfortable when it does.
 
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Elizajp

Hello again! Just an update for anyone who might be in a similar situation- I am five weeks post-abscess drain and seton placement and doing so much better! I think a combination of Remicade (2 infusions so far with no problems) and SCD have helped me. I still have occasional discomfort with the setons when sitting or being super active but it's more just annoying than anything and I have minimal drainage. So there is hope! Three weeks ago I still had terrible pain and couldn't really get around at all!

Question for those who have had setons removed- when did you know it was time? When it stopped draining? Mine drains very little now. When it finally stops draining completely do they just remove it? Or do they do an MRI first? Any other tests to know its time?
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
Glad to hear you're doing well!

And yes, you need to wait for it to stop draining before getting it removed. My GI made me get an MRI beforehand to check for any inflammation or infection as well, and there wasn't any. Once that was confirmed, my doctors were comfortable with me getting it removed.
 
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Elizajp

Good to know! I called my CRS's office and they said no MRI- they will just take it out when it stops draining. I may have to ask my Gi about the MRI!
 
theOcean

theOcean

Moderator
Location
Toronto, ON, Canada
Elizajp said:
Good to know! I called my CRS's office and they said no MRI- they will just take it out when it stops draining. I may have to ask my Gi about the MRI!
Click to expand...
Yeah, my surgeon was actually comfortable removing mine back in December, prior to getting the MRI and everything -- but said that it was ultimately up to my GI. My GI wanted me to get the MRI just to be safe and to make sure everything was okay. So it's really just more assurance that nothing bad will happen if you get it out. I'd definitely recommend it because of that.
 
S

sadiekins

Living with Setons.....forever?

Setons........I'm very curious to know who invented this method of fistula healing. The way it was presented to me was not very well explained. If my surgeon had flat out said....look, i'm going to drain this abscess, I'm going to put a very hard string that will be sticking out of you , and by the way when you wake up you might have more than one. It will be in an area where feces will get into the wound, sex will be painful...almost non existent...and by the way they do drain so think of it as having severe diaper rash 24/7.....did I mention it will take about a year maybe longer to heal. Also , hope you have good insurance because after I put them in, you will have to probably get an MRI to make sure no others have developed, of course surgery to remove them and then you must be on an infusion drug the rest of your life. every 8 weeks...Very expensive...By the way he says.. stop smoking or I will NOT remove them!.....Well, if you can get disability in order stay on Xanax and pain pills..it might not be so bad....If you have to work and try to keep yourself clean and from not having Level 10 stinging in your crotch...I would try to figure out another way....just my opinion.....Also on these threads...I never hear the comment...I got mine removed today!....I just think it is forever.....surgeons just don't wanna say it.....Living with Crohn's what a joy!
 
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justbreathe8

Hahahah @sadie!! That's great!! Exactly how it is!! Hahah but as for no one saying they got them removed, people come on here when something is wrong and tend to leave when things are right again. I think more people get them removed then we think. I had my 3 removed July 2014 and haven't had another surgery since. But I also do not have crohns. Anyways, thanks for a good laughs! I liked that! :)
 
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sadiekins

justbreath.....you gotta have a laugh .....in order to stop crying and being depressed all the time!......by the way, the world will know when mine get removed...(maybe Feb.2016).....im going to ask to keep my strings....i wanna frame these freakin things!....in my wildest dream ..I never thought I would have something like these bread twist ties implanted inside me...just sayin.:yfaint:
 
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justbreathe8

Haha I totally agree!! I should have kept mine!! Lol you def have to laugh to keep from crying!! And even then I still cried!! Haha best of luck to you!!! Get a nice expensive frame!! ;)
 
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sadiekins

oh , you bet a beautiful frame....with a brown mat....Hint, hint...:wink: What a conversation piece....I can't wait when someone ask...What are those stringy things?...... oh, Let's talk about booty!:shifty:
 
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