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Removal of seton drain (Page 1)

Hi,
I had surgery at end of July to open & drain a perianal abscess that had formed due to a fistula. They inserted a seton drain into the fistula track and told me it stays there until it stops draining. It's gross, it hurts, it smells & I have to wear pads constantly & live in joggers. I have had Crohn's Disease for 12 years and am on Azathioprine for ever it would seem! I'd like to hear from anyone else who's had a seton drain or still has one. Also really want to talk to anyone who's had the experience of having one removed as I'm really freaking out about it due to it being so painful already! Thanks...
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First Helper mpc66
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Users who thank Loha for this post: lozzabozza 

replied November 24th, 2010
I am day 4 after I & D of a peri-rectal abcess and the insertion of a seton drain. Everything Loha said is true; it's worse than I really thought it would be. My doctor says it has to stay in place for 8 weeks, then stage 2 surgery for removal. I don't know how I'm going to return to work with so much of my day spent on hygene and wound care; not to mention going without pain meds. If you have any more info...I would greatly appreciate it as well.
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replied November 24th, 2010
Feel for you af2010. I'm 12 weeks into mine now. Have no real idea when it's coming out although surgeon said he'd do another investigation under anaesthetic and either lay open the fistula or put another drain in. Needless to say, I was gutted to hear this as I was hoping it would be coming out forever. I'm seeing him on 2nd December so will know more then. Dreading the appointment as there's a lot of really painful granuloma round the drain site which was dealt with using silver nitrate last time. Don't know what will happen if it never heals....I'll have to ask him!
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replied February 25th, 2011
peri-rectal abscess/fistula/seton drain(s)
Hi, I had seton drains inserted 1/5/11 due to peri-rectal abcess and fistulas. I have been in pain ever since and was re-hospitalized with a cellulits 4 weeks after surgery. I've been on a mega dose of antibiotics ever since and am still experiencing pain. I don't know if the pain is from the seton drains or the lump where the cellulitis formed. the lump is draining too...at least reading your posts, i know i'm not alone in this horrible experience. I'm just hoping that the pain will go away. I can deal with these wires hanging out of my butt and the drainage and the extra hygene, but I cannot deal with the pain!!!
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replied April 20th, 2011
Seton removal
Did they take the setons out? I have had 4 of them running through the dreaded area and they have not told me when they will come out. The smell is awful, and have pain periodically especially when they catch on something. Let me know what you have dealt with soon, since your surgery was well ahead of mine, Surgery date 2-23-11.
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replied February 25th, 2011
oh, i've had Crohn's Disease for 26 yrs, had a colon resection leaving only a small section of colon. Crohn's has been stable for last 5 yrs until this abscess episode...this has been the worst experience in the past 26 yrs!!!!
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Users who thank laubob for this post: Loha 

replied March 4th, 2011
Feel for you laubob. I'm still awaiting surgery to remove drain & investigate how the fistula is doing. I can tell them for nothing that it's not healing! It goes through a cycle of build-up (pain, swelling, itching, heat), drainage over about 3dys, then about 6dys free of pain or unpleasant symptoms. That's 6+ months on! Great for your self-confidence levels......not.

During this next op, the surgeon is going to "lay open" the fistula, which I understand entails taking the 'roof' off the 'tunnel' that is the fistula. Now that's going to be a whole barrel of laughs, having an open wound right next to my bum. And worst case scenario is long-term incontinence due to the sphincter being cut into. At 41, that sounds magical!

I've become very sceptical, cynical & have developed a better sense of humour since this all began, but.....I'd give a lot for a healthy alimentary canal with no Crohn's and no fistulas. Wouldn't we all?

Do keep in touch Smile
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replied April 5th, 2011
Have I got a story for you!

I noticed I was getting swelling and pain in the perianal area. It got so bad I had to go to the doctor because I could barley sit. The doctor examined me and told me he thought it was a prostate infection, so he put me on anitbiotics.

OK...3 weeks later with no relief, I make my way to the emergency room. They look at at, then call my surgeon who do my 2nd bowel resection 01/09. She shows up and says I have to go to emergency surgery NOW!
After waking up, I find that she cut a small incision just to the side of my rectum, basically the inside cheek. She said she found the tracking in my butt cheek and incised it but did not find anything? I'm wondering why she didn't take care of the area that is swollen? Not to be graphic but.. from my rectum into my scrotum was the size of a golfball! She did manage to drain that to give me a little relief but not much.
The surgeon gave me pain pills and antibiotics and said see ya!
I suffer with this for another month. This time I am very ill. I have a 104* temp and just felt like I was dying.
GUESS WHAT HAPPENS NOW ????
The surgeon takes me back to surgery and unroofs the large swollen Fistula/Abcess(she hadn't decided what it was yet). I wake up in unbelievable pain !! She cut from my rectum to my scrotum and into it about 1.5 inches. She said go home and comeback tomorrow so we can change the packing. I almost fainted each time that happened. after doing that for about 4 days, they told my wife she would need to do this for me.
OMG !!!! The blood and fluids were crazy to be dealing with all that mess at home. Finally, we had an RN change the packing for me at home daily for the 1st 3 MONTHS. After that I sort of got used to and my wife was able to do the packing.
This has been going on for a year this month, and the surgeon wants to go back in and cut between the 2 incision site and make them one. BASICALLY START ALL OVER AGAIN!!! I refused and haven't been to see her in almost 2 months. My wife and I made a decision to stop packing it ourselves, and it has worked so far. I do have to wear womens spandex undies and use panty liners, but I have been able to go back to work.

Panty liners for a year! I think I can understand the woman issue with thier cycle -LOL!!

I WISH ALL OF YOU THE BEST !!
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replied March 4th, 2011
I also have BPD (Borderline Personality Disorder) which coupled with the Crohn's, makes life quite a challenge! I'd love to meet other people with Crohn's & am very welcoming of making friendships on here..........
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replied April 5th, 2011
Have I got a story for you!

I noticed I was getting swelling and pain in the perianal area. It got so bad I had to go to the doctor because I could barley sit. The doctor examined me and told me he thought it was a prostate infection, so he put me on anitbiotics.

OK...3 weeks later with no relief, I make my way to the emergency room. They look at at, then call my surgeon who do my 2nd bowel resection 01/09. She shows up and says I have to go to emergency surgery NOW!
After waking up, I find that she cut a small incision just to the side of my rectum, basically the inside cheek. She said she found the tracking in my butt cheek and incised it but did not find anything? I'm wondering why she didn't take care of the area that is swollen? Not to be graphic but.. from my rectum into my scrotum was the size of a golfball! She did manage to drain that to give me a little relief but not much.
The surgeon gave me pain pills and antibiotics and said see ya!
I suffer with this for another month. This time I am very ill. I have a 104* temp and just felt like I was dying.
GUESS WHAT HAPPENS NOW ????
The surgeon takes me back to surgery and unroofs the large swollen Fistula/Abcess(she hadn't decided what it was yet). I wake up in unbelievable pain !! She cut from my rectum to my scrotum and into it about 1.5 inches. She said go home and comeback tomorrow so we can change the packing. I almost fainted each time that happened. after doing that for about 4 days, they told my wife she would need to do this for me.
OMG !!!! The blood and fluids were crazy to be dealing with all that mess at home. Finally, we had an RN change the packing for me at home daily for the 1st 3 MONTHS. After that I sort of got used to and my wife was able to do the packing.
This has been going on for a year this month, and the surgeon wants to go back in and cut between the 2 incision site and make them one. BASICALLY START ALL OVER AGAIN!!! I refused and haven't been to see her in almost 2 months. My wife and I made a decision to stop packing it ourselves, and it has worked so far. I do have to wear womens spandex undies and use panty liners, but I have been able to go back to work.

Panty liners for a year! I think I can understand the woman issue with thier cycle -LOL!!

I WISH ALL OF YOU THE BEST
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replied April 11th, 2011
You poor, poor man!!! That's absolutely awful. So much for putting our trust in the professional qualified medics! I wish you all the best and hope you heal...as for the pain, the humiliation, the low moods, the tiredness...well! I understand...shame not many others do.

I had my Seton drain removed on 7th April and had the fistula laid open. I prefer this to the drain by far although I'm in a lot of pain. I have to start Adalumimab injections from the Crohn's team soon to try to finally get it under control and healed. What a laugh...I don't think!

Good luck & very best wishes to you and your wife.

Louise
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replied July 22nd, 2011
Hi, I don't have crohns but I thought I would answer your question. I got a thorn stuck in my inner thigh which caused an abcess. i won't go into massive detail but I'll just say that there's been a lot of doctor error with me. Anyway I now have a seton, initially it came from my leg up into my colon and back down again but I couldn't walk so they moved it. It's been about 20 months now. I became really tired of being told that I'd be well, healed and back at work soon, it didn't seem to ring true so I decided to pay to see a private consultant. He told me, very bluntly, that I would never heal, the seton would probably be in for life and I would never go back to my job because of it. I'm partially incontinent because of the damage to the muscle. I take care of it myself without the hospital's help now as much as I can, I hate the doctors now, I use an enema every day so I stay clean, I take silicea and arnica and I was shocked to discover that it works, I don't even take tramadol anymore, I've always been very cynical about homeopathy but anything was worth a try I was so desperate. I do get very distressed with the smell and wearing pant liners everyday but I've just started running on my treadmill and doing pilates again, which I couldn't have dreamed of doing two months ago because the pain was just so bad. I am determined that I will go back to work at some point. It's very upsetting and I find it incredibly insulting when the doctor says that the smell is my imagination. It's not, no matter how many times I clean myself I can smell it. It's like a cadaver. I know this is really disgusting but I've found the best way to deal with it is to stick a swab just inside the anus. It takes away that, drip drip sensation and the smell isn't as bad. I've just learnt to live with it really even though I do get very depressed when I have to discuss it in detail. It's very hard to mantain a relationship like this. I feel disgusted with myself so I don't let my husband come anywhere near me. It's not the most positive of replies I know but if you have a high complex fistula the chances of healing are low but if it's low and simple, it will heal, it can be laid open....by a good doctor only!!!!
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replied July 24th, 2011
Dear Friend,

I really feel for you with what you have had to endure. And are still enduring. I finally had my drain out under anaesthetic in April and they laid-open the fistula, which was painful at first but it has now finally stopped draining and I'm hoping that if they can keep my Crohn's under control, that will be the last I'll see of Seton drains. They're gross and yes, they smell. I had to change my joggers every day and was too embarrassed to visit friends or socialise, because I could smell myself and knew that it left an odour where I'd sat!

I can only wish you all the very best of luck with yours. I hope that there will be a breakthrough for you and the chance to move forwards. Bless you.

Kindest Regards,

Louise
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replied August 4th, 2011
I had my seton placed July 7th after having a hemorroid lanced open three times. Apparently the abscess wasn't obvious?? Anyway, I returned July 7th with pain and was rushed into surgery with no explanation. I woke up with the seton and sent home. Not much in the way of instructions, only pain meds and a follow-up appt. Anyway, I am now getting very upset after reading all of these posts. Not once did anyone mention to me this was going to be a long term issue, This string is a pain in the butt, literally and I have about had it! I spent both of my vacations, the lake and the beach, DRY for fear of making things worse. I am unable to do the things I have always done like biking and swimming and my children don't understand why. The doctor is going to get an ear full tomorrow when I explain my disgust at how this was done. It's his job and duty to inform me, the patient, before hand. He didn't and now I am angry to say the least. I have survived two cancers and the unexpected death of my mother all in a year, all before turning 40 and dealt with that ok. THIS is going to be the thing to push me over the edge!! Sorry to vent, but I know you all understand.
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replied September 16th, 2011
I am a 30 year old female and I had surgery two weeks ago to drain a perianal abcsess due to a fistula. The sergeon placed a seton drain to drain the fistula and told me that it needed to stay in for at least six month or longer. The pain is just horrible, no words can describe it. This drain has just made my life so miserable; it is painful to use the restroom and to clean myself afterwards, I never feel completely clean and just feel disqusting (sorry for my spelling) due to the draing of blood, pus and everything else that is draing along with having ladicane and gaze up my butt (constant wedgie). I am in constant pain and dont know how I am ever going to go back to work and funcion on my pain meds. I have also traded my purse in for a small messenger bag to hold my wet wipes, gauze, creams and ointments, ice pack, medicine, an extra pair of panties due to having moments of bowel incontinence, and a pillow to sit on. It is so hard for me to sit comfortabley and I only feel comfortable in sweat pants.

Well... When I had my first follow up with the sergeon, he told me that the drain needed to stay in "indefinately"... Go figure with my bad luk, last night I was vomitting due to all the meds and had diarrhea which made my seton drain come out (I believe that that is what made it come out). But only after two weeks??? Has anyone experienced their seton drain comming out? I am waiting for the sergeon to call me back but the waiting for a call is racking my brain. am I going to need another surgery to replace it? I cant bare the thought of going through this again.

Another question I have is, my discharge papers say not to drive with the drain in... Has anyone else been told the same thing??? I was somewhat upset about not driving for six months but knowing that this drain will be in forever has really put me over the top!!!! I am having a hard time coping with the new diet, the pain, and always having a tube coming out of my rear end. Definately not good for ones self confidence. It's kinda hard being out and feel good about the way I look knowing that I have creams on my bum with a gauze wedgie and also a "tail" that is draining and has a smell! I sware this whole thing is turning me into a mental basket case...


I am really glad to hear that Im not alone with all of this and wish the best for everyone!!!!
Looking forward to any advice possible
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replied November 11th, 2011
i had an abscess that was drained and unfortunately turned into a fistula. In Jan (2011) i had a seton placed for draining and to allow the abscess to heal. I have crohns disease and am taking Imuran. My "third hole" as I like to refer to it drains constantly..sometimes pus, sometimes blood, and sometimes just clear fluid. The seton doesnt really bother me for the most part unless the note gets stuck, but you are right, it does smell and not like roses. My doctor told me i could have the seton removed if i wanted to, however I have a 50% chance of this whole series of events reoccurring. At this point I have opted to leave the seton in and hope that Imuran starts doing what it is suppose to. I am unable to have the fistula "cut and laid open" as I am told it wraps around my muscle and it would definately make me incontent and we both decided that was not a good option. I use 2x2 gauze pads to keep the drainage "neat" and taking a bath is helpful with discomfort when I have it... this is not a fun thing and i sympathize with everyone.
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replied November 16th, 2014
I am 36 and have had Crohn's since I was 12. In July I got a perianal abscess which was drained. It then formed a fistula that kept opening and closing. Both my gastro and surgeon said to have a seton put in so I don't get another abscess that could be worse and cause more damage. That was put it in at the beginning of November. I AM MORTIFIED!!!! It is not a cutting seton since they said it is too close to my rectum. THey cannot cut the fistula out because it is too close to my rectum. They keep telling me if they do anything else to fix the fistula then I will most likely be permanently incontinent. My only option is to keep it in or take it out and hope I don't get another abscess. My surgeon said it did not look like it was related to my Crohn's. I am only on 6MP and I have been in remission with my Crohn's since I started having children 6 years ago. I cannot go on any of the biologics because I get the medicine-induced Lupus from them (both Remicaid and Cimzia). Does it ever stop draining? Since I had this done, my underwear is constantly wet with blood or pus (brown but not stool-no smell). I thought the whole point of having this done was so I wouldn't end up incontinent, having to wear a diaper at all times, but this is just as bad. Who wants to wear a pad all month long? Also, I used to have a healthy sex life, but I am so mortified by this and my boyfriend is a germ freak, so I find it really hard to want to do it when I picture that all he is thinking about is this third leaking hole. Not to mention that I do not want to leak on him during sex. How do you deal with this nonsense?
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replied February 22nd, 2012
I am a 40 year old woman with 2 kids and was diagnosed with fistulizing Crohns 2 years ago. I had 2 setons put in about 6 months later and just wanted to let you all know that it gets better! At least for me. When I first had them put in the surgeon used giant setons (at least in my mind!) I switched surgeons and she replaced them with much smaller ones. I still have the smelly drainage but they really don't hurt me as much anymore. I did have them remove one of them a while back but after a few months I got another absess and had to have them put in a new seton. I am glad to read all of your posts and know that I am not alone with this disease. My surgeon told me the other day that she wouldn't wish this disease on her worst enemy.
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replied April 10th, 2012
vaginal rectal fistula and seton drain
I was diagnosed with Crohns about 2 years ago. At first the GI doctor managed the disease with Humira. This only worked for 4 months. Then I developed 2 rectal vaginal fistulas. I was very hesitant about surgical intervention so I just dealt with the drainage and intermittent pain. I ended up with several infections including cellulitis in right labia. I was admitted for IV antibiotics and then ended up having 2 seton drains placed (3/14/12). I was told life would be normal, have sex and get pregnant (which is a huge desire for me), and get back to a healthy normal life. For the most part life is much better except I can't gain any weight (stuck at 106)because the more food I eat the more I have to go to the bathroom which hurts to wipe, the worst thing is it hurts like hell to have sex. My husband says I feel really tight but it does not cause him pain, unlike it causes me pain. I can't help but think if when he the doctor cut into my tissue to reroute the fistula tract, an abscess has formed or he demaged something by my vaginal wall because it feels like a bulging. Is there any female out there who can relate to this?
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replied April 10th, 2012
vaginal rectal fistula and seton drain
I was diagnosed with Crohns about 2 years ago. At first the GI doctor managed the disease with Humira. This only worked for 4 months. Then I developed 2 rectal vaginal fistulas. I was very hesitant about surgical intervention so I just dealt with the drainage and intermittent pain. I ended up with several infections including cellulitis in right labia. I was admitted for IV antibiotics and then ended up having 2 seton drains placed (3/14/12). I was told life would be normal, have sex and get pregnant (which is a huge desire for me), and get back to a healthy normal life. For the most part life is much better except I can't gain any weight (stuck at 106)because the more food I eat the more I have to go to the bathroom which hurts to wipe, the worst thing is it hurts like hell to have sex. My husband says I feel really tight but it does not cause him pain, unlike it causes me pain. I can't help but think if when he the doctor cut into my tissue to reroute the fistula tract, an abscess has formed or he demaged something by my vaginal wall because it feels like a bulging. Is there any female out there who can relate to this?
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replied April 18th, 2012
Hi
I have had crohns for about 23 yrs and fistulas for 4. I tried remicade but it only seemed to work for about 4 sessions then I would always feel much worse so the doctors stopped that. I had seton surgery in Dec 2011 and as I came to the surgeon told me that as well as about 6 anal ones, I also had a vaginal one too. Sex is extremely painful and my husband also says that it feels tight, in fact so tight sometimes we just have to give up! am on steriods, anti-imflammatories, anti-biotics, iron and calcium tablets as well as regular blood transfusions. At the minute I have a huge hard lump in one buttock and cannot sit, lie or stand without pain and the hospital has just rang to say they want to remove the setons in 8 days. I'm still draining so don't understand why. anyway, your'e not alone!
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replied April 27th, 2012
Crohns Seton and Remicaid
Hi Everyone, new to the forum; just had my first setons placed 2 weeks ago. I am 42 and have had crohn's since I was 12. It is a very painful upsetting disease and I struggle with just wanting to be "normal"! I have had a colostomy and several resections when I was younger due to the lack of research on crohns when I was a child. Just started remicaid. I hope it works. It is encouraging to hear that there may be some hope! All we can do is stay strong and positive and take as good care of ourselves as possible! Good luck to all of us "crohnies" Smile
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replied May 2nd, 2012
Fellow Crohns sufferer
I had a seton I settled today. Had no idea that I would have a tube hanging out and all the above posts have really scared me. Has anyone got anything positive to say about having a seton. Am now feeling really depressed
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replied May 2nd, 2012
I had a seton I settled today. Had no idea that I would have a tube hanging out and all the above posts have really scared me. Has anyone got anything positive to say about having a seton. Am now feeling really depressed
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