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Crohn's Disease with recent perianal abscess & fistula

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Wondered if anyone else has experience of living with a seton drain/stitch in place as I had one put in after an investigation under anaesthetic in July. Had massive flare up of Crohn's from May onwards this year and it just kept getting worse. Was admitted to hospital for 9 nights after sigmoidoscopy showed severe colitis (I have Crohn's?!). Masses of steroids, Azathioprine raised, Metronidazole & Cefalexin for weeks...then the surgery. I've no idea how long the seton drain will be in for but they say they'll just take it out in clinic...no local anaesthetic or anything! It's extremely painful, draining loads of yukky "gunk" and it's all a bit new to me. They say fistula may not heal so may need further surgery? Or they're going to try me on Infliximab. Be glad to hear from anyone who knows more about these things Smile
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First Helper Loha
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replied October 7th, 2010
Hi I know how u feel, I had seton stitches in for about a year. I kept getting abscesses and fistulae so the stitches hold things open and allow the pus to drain. Its horrible I know but I've had mine taken out. It doesn't hurt at all because they take it out when things have healed better. However at the moment i think I feel another abscess developing! It does ur head in cos u just want to sit down without being in pain.
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replied October 8th, 2010
Exactly! I had what I thought was a new Crohn's tag "growing" on the surgery site, just next to the drain/stitch. It got big quickly and was agony, just a horrible, bright red flap of skin! The surgeon took a look yesterday and said it was granuloma, "bad" healing? Much to my horror, he dealt with it there and then with a cauterising stick. Youch - it really was very painful. Now another 6/8 wks til next appmt, then another investigation under anaesthetic to either lay the fistula open or place another seton stitch in there. Had no idea it would take this long, in so much pain and trying to cope with two teens on my own. Just drags on. I know it could be much worse and lots of folk are suffering far worse but it gets you down...
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replied October 11th, 2010
It must be tough to have a family and live with this illness. I don't have kids but in the future I would like to. Then I wonder how I would be during pregnancy!! Anyway I wondered what causes these abscesses so I've spoken to a homeopath and I wanted to share a possible answer with u! Go onto google and type in staphylococus, it's very interesting and there's a fantastic forum on 'abc homeopathy' site when u type in staphylococus. So my homeopath has given me something to deal with this and I'm hoping that treating the root cause (docs never do this!) will make a difference. Anyway have a look and see what u think.
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replied October 11th, 2010
Thank you so much! I'll have a look. I've never tried homeopathy or anything other than the medical approach, because I assume I'd need to stop taking Azathioprine, and everytime I've tried this, I get ill rapidly.

Sorry that you suspect another abscess. I really feel for you. I guess I'm grateful that my Crohn's didn't show up until my first child was 6 months old. The bad thing was, I got pregnant with my second child before being diagnosed, and was very ill throughout the pregnancy. Obviously, they were very reluctant to do any invasive investigations, so it wasn't until after she was born that I was admitted to hospital, close to losing my entire colon, and diagnosed finally!! I was told I'd got IBS for the first 2 years of my symptoms!!

All I'd say to anyone wanting a baby is to make sure you're really well before trying to conceive...

Good luck with the homeopathy!
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replied October 18th, 2010
Have had crohns & UC for over 50+ yrs.
I have had crohns disease for 50+ yrs.
After all these years many surgery's-re-sections,hospitalizations,I have now had for the 1st time anal abcess crohns,yes it hurts a lot to sit,was just hospitalized a week ago w/surgery cause of 2 abcess's.They are still draining,had a drain put in for about a week & just taken out.It felt like I was sitting on a hose.I have been doing 3x a day sitz baths w/a little salt in the warm water,it helps. My surgeon & GI are kind of surprised that after all these yrs.having crohns in my terminal illeum that I would now get these I said seems with me expect the unexpected,nothing is ever normal with me.
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replied November 3rd, 2010
Nothing's ever normal with me either Ash59, I now have another granuloma almost a centimetre wide, on the site of the seton drain. Consultant said it wouldn't happen again but, hey, this is my weird immune system they're dealing with! 100mg Azathioprine a day for last 10yrs has seen to that.......
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replied December 8th, 2010
Possible Chrons, but only tol UNLUCKY at the moment. Not FUN
Hi, Ginnie, from Boston
41, have had 2 seton drains over the past 14 months, through my left but cheek, now have new surgeon who installed cutting drain and flap on new fistuals that developed from previous seton drain site. Told UNLUCKY>>> no diagnosis, no pain med, just told to use tylenol and advil... cannot take this anymore....having cutting drain removed asap and colostomy bag installed. The pain is terrible, this stoped my life in a moment without notice and doctors can only say they don't know why.....Is there an end in sight? Sorry for grammer and spelling sitting at a computer is torture....
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replied December 9th, 2010
Poor, poor Ginnie! That sounds like a NIGHTMARE. It occurred to me that another fistula could develop from seton stitch site but not heard of anyone who it had happened to before now. Really feel for you. I'm having mine removed under anaesthetic in January and the surgeon's laying open the fistula and cutting away all the granuloma tissue. He said I won't be a able to control my wind!! Is this for ever or just while it tries to heal?? And what's it going to be like living with an opened-up fistula on my left buttock? I'm pretty apprehensive to say the least. Thank goodness I'm single! Think I will be forever now thanks to this...good luck x
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replied February 25th, 2011
seton drains suck! abscesses suck!! Crohn's Disease Sucks!! we will all will just have to learn to live our lives laying down or standing up (sarcasm). 7 weeks post peri-rectal abscess drainage with placement of 2 seton drains...had a rubber hose coming out of my butt cheek for 2 weeks, but that was pulled out at post surgical follow up visit. developed a cellulitis and was rehospitalized for 4 days on high dose IV antibiotics and on oral ever since. still in pain, still have a bump (cellulitis?) that hurts like crazy. I don't think the rubber band seton drain things are the main cause of the pain, but uncomfortable and get in the way when cleansing. I see another anal/rectal specialist on 3/14/11 and will know more about next steps then :-/
Crohn's - 26 yrs; colon resection taking most of large colon.
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replied April 13th, 2011
Ladies and gents, it sucks but I have three rubbers and a open whole big enough for ur thumbprint right now. Sitting on a heating pad definitely helps loosen up the infection and relieve pain. Obviously, constantly pushing out the infection. Also seeing a naturopath and am on probotics to help build back up the immune system. Carry a pillow every I go for comfortable seating
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replied June 27th, 2011
I have years of this as well. For the last 3 weeks it has got worse so painful and oozing out of the fistula. Had fistulotomy and many abcesses, no energy what so ever! So fed up of it! I want the old me back!
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replied May 31st, 2012
I just had the rubber band put in, I'm super nervous to have it taken out. I have bad anxiety when it comes to my chrons. I am 20 years old, have had chrons since I was 10 years old and still do not take any of these visits easy.
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replied August 7th, 2012
emma grey uk
i have been suffering from crohns disease now for 15years started when i was 15years old, i got diagnosed at 17years. the disease was controllable with medication (frequent flare ups)up until four and a half years ago jan 2008 when i started getting recurring abscesses to start with my doctors used the Seton drains as well as cutting the more serious ones and laying them open. this was ongoing every month or so with regular hospital admissions and regular operations to June 2010 when i had a temporary ileostomy constructed this gave me minor relieve from the abscesses/fistulas up until now my most recent surgery was july 23rd 2012 which resulted in laying open yet another abscess but this time my surgeon derooted i was hoping this would sort the problem but less than two weeks since surgery im facing yet another abscess which is very painful, managed to get to see a doctor at the hospital with the result being i am now facing total bowel removal and having the stoma for life. my worry is that Crohns can effect every part of the digestive tract and if they take away my bowels will i start getting these abscesses deeper inside my body where i wont be able to see them and i wont know that they are there! i really hope that somebody has some suggestions so i can arm myself with ideas to throw at my doctor/surgeon. and i wish everybody who suffers this disease to live well and fulfilling lives as my dream is to just be well.
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replied August 8th, 2012
I have the stoma, was supposed to be temp, only last three months but infection has been here.for over six months. I was told my rectum hasent healed and it might be in the near future to take it out. Being twenty years old especially... This news has taken a toll on me.
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