Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Fistulas, Fissures and Abscesses Support Group



 
11-30-2017, 06:19 AM   #1771
ronroush7
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Hi all, I recently had a seton placement for what turned out to be a mid to high perianal fistula ... started as a bad abscess almost 4 years ago that kept returning. Actually went away for a year, but then got so bad they sent me to a gen surgeon to have it lanced. Went down like by half but not away. All the guy ever told me was it might return but there was really nothing they can do about them and to just deal with it... seriously. So, next year and half swelling up and down and then gone again until recently wound up in er worried about dying from an infection. Thought they'd just lance again, but instead insisted on getting permission from my doc... the surgeon i saw once to lance and once for followup. He told them to do nothing and send me home with pain meds and to make an appt with him asap. I said fine. Left er and called his office. He couldn't see me for 5 days! Gave me appt with diff gen surgeon 2 days sooner. Took it. He said was a fistula and fistulatomy would be simple no problem. Was a weightloss specialist. I thought it over decided to ask for another opinion from colo-rectal specialist. She recommended seton placement for drainage then eventual fistulatomy. Had the seton procedure. The placement of the knot (tie) drove me nuts, the end was poking my anus no matter how i wrapped it up, till it loosened up, finally seeming to drain. 2 week followup with nurse practioner who told me the surgeon wouldn't even have put a seton in if fistulatomy was at all possible. She said seton means it's high up and fistulatomy would make me incontinent. I cried cause my surgeon told me the other procedures are all unreliable and that incontinence would be minimal. The woman kept arguing with me. Finally saw my surgeon again a month later (feeling a small painful infected feeling lump at the fistula opening, and that morning i notice what feels like another abscess stemming from it going to my other cheek!) The surgeon says what the nurse pract. told me was wrong and, again, only fistulatomy will work and eventho higher up, incontinence will be minimal. Puts me on Cipro and metrosomethingorother for the infection says doesn't think the new abscess is anything, but it feels as bad as the old one. Long story... I'm really sorry. I'm really feeling scared and also having diarrhea from the Cipro. It also seems that this infection comes whenever i have a bout of diarrhea! Like its getting into the fistula and not draining, no matter how well i clean it or soak in the tub and change the gauze dressing everytime i use the bathroom. I'm having extreme anxiety over this, and so angry that it just seems to get worse. Also petrified now of Cipro side effects. I haven't been diagnosed with crohns or aything? I have had what i call "stomach issues" forever though. Periods where i take several Tums a day and some strange allergies. Thought i was allergic to eggs for years, turned out it was sulfur, so garlic and certain veg i CANNOT digest and really make me sick. Seems i get crazier everyday about what i can and can't eat. This whole thing is just making me crazy.
Sending support

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11-30-2017, 10:35 AM   #1772
GypsyLooo
 
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Hi GypsyLooo

Sorry to hear about everything you are going through. It is such a horrid thing to deal with and it's so hard as you feel there is nobody to really talk to as nobody talks about 'that place'.

I've actually had to start getting pretty blunt with family about it. Not rude or anything but just had to explain the facts clearly so they understand what you are dealing with.

You do feel like it will never end but it must get better. I know this because so many nice people on here have told me so as they have been though it too. So it will get better

In other news for me, my Seton actually came out last night. Got to speak to the hospital today to find out if I need another inserting. I'm trying to see the funny side to it all if I can. Being so near to Christmas, do you think my surgeon would agree to attaching some small jingle bells to a new seton so I don't lose it?

Andy
Thanks Andy, lol! Yeah, i keep trying to laugh it off. I think it's this Cipro they have me on that has me panicky. Side effects are scary. Infection is scary. At first it was just the inconvenience of it all, then you slowly realize how stupidly complicated this whole thing is and gets depressing when you realize they can't just fix it. I hope the doc fixes you up! Merry Christmas! 🙂
11-30-2017, 10:35 AM   #1773
GypsyLooo
 
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Sending support
Thank you!
11-30-2017, 06:35 PM   #1774
cmack
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Hi GypsyLooo

Sorry to hear about everything you are going through. It is such a horrid thing to deal with and it's so hard as you feel there is nobody to really talk to as nobody talks about 'that place'.

I've actually had to start getting pretty blunt with family about it. Not rude or anything but just had to explain the facts clearly so they understand what you are dealing with.

You do feel like it will never end but it must get better. I know this because so many nice people on here have told me so as they have been though it too. So it will get better

In other news for me, my Seton actually came out last night. Got to speak to the hospital today to find out if I need another inserting. I'm trying to see the funny side to it all if I can. Being so near to Christmas, do you think my surgeon would agree to attaching some small jingle bells to a new seton so I don't lose it?

Andy
I hope it can wait, sheesh! What a time for it to fall out? I think you better tell the surgeon about it. I like the bell idea. Good one!
12-12-2017, 01:40 PM   #1775
Matthew24
 
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I had fissure surgery about six months ago I had an abscess created due to that surgery. I've been battling that abscess for six months now it finally started to harden up and try to heal and stop releasing pus and then I injured it the other day moving around really quickly and everything feels torn and now when I fart the air goes into the cavity and it's very painful and feels like it's healing but slowly now I'm thinking about fasting so I'll stop farting. The air tends to stay in there until I cough really hard or actually physically push the hadened scar tissue mass down and release the air which is very painful and causing more swelling and the lack of healing. Any thoughts on air getting stuck in there. will that create an infection will it stop it from healing or will the cavity naturally push it out as it heals. It's days I'm replying to a post. I don't get it. I just want this posted and some feedback as I'm losing my mind after 6months of this.
12-12-2017, 02:54 PM   #1776
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Hi Matthew,

Sorry to hear you are going through all of this. I would definitely be speaking to your doctor or surgeon about all of this if you can. It sound like a horrid thing to be dealing with. What have they said is the long term plan for dealing with the abscess? Is there a plan to have it surgically drained or is this not possible?

Everyoneís experience is different but I can empathise with the experience of wind passing through it and causing pain. Iím almost pian free now except some mild pain during BMs and if wind passes the area but still taking some pain medication as on my feet all day now Iím back in work. (Recently had fistula surgery, not sure if you read previous posts)

Sending my support to you and I would definitely be getting in touch with your doctor at the very least to see if they can recommend anything to find some relief. In terms of healing and pain relief, Iíve found sitz baths have helped things along a lot. However Iím unsure if this would help heal an abscess in the area. My understanding is they usually need to be drained? Not a medical expert though so donít tak my word for it. My abscess developed into a fistula as it wasnít dealt with properly by my GP and was left untreated.

Hope you find some relief from all of this very soon, I know how distressing and uncomfortable it can be.

Andy
12-12-2017, 03:25 PM   #1777
MeLee38
 
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I would talk to your surgeon as soon as you can. I feel for you. I have a recto-vaginal fistula which developed after having an anal abscess that went misdiagnosed. They did an advanced flap repair on mine, and although I still pass gas through it, that is all that comes through. There is no more abscess, and no more fecal matter leaking out through it or pain. Just gas whenever I cough or sneeze. I have had 2 more perianal cysts since than, both were surgically excised under anesthetic - one just last Monday. So I currently have a golf ball size opening, which they have left open to heal from the inside out (no stitches or glue to close it at all). Feel your pain and empathize. Get to a doctor asap if you can. Best of luck!
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Surgeries/History:
- Bartholin Cysts, Acid Reflux, Hemoirrhoids&Bowel issues, skin rashes, fatigue, joint pain
- Anal Abscess Removed (cut through sphincter muscle) Dec 2014
- Formation of Recto-Vaginal Fistula Jan2015
- Hemorroidectomy & Advanced Flap Repair Dec 2015
- Removal of peri-anal cyst Sept 2016
- MRI July 2017
- Colonoscopy October 2017
- Peri-anal cyst #2 removed Dec 2017
02-19-2018, 09:49 PM   #1778
Lynda Lynda
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Thank You everyone for sharing.
02-22-2018, 03:18 AM   #1779
Barmybev66
 
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I would talk to your surgeon as soon as you can. I feel for you. I have a recto-vaginal fistula which developed after having an anal abscess that went misdiagnosed. They did an advanced flap repair on mine, and although I still pass gas through it, that is all that comes through. There is no more abscess, and no more fecal matter leaking out through it or pain. Just gas whenever I cough or sneeze. I have had 2 more perianal cysts since than, both were surgically excised under anesthetic - one just last Monday. So I currently have a golf ball size opening, which they have left open to heal from the inside out (no stitches or glue to close it at all). Feel your pain and empathize. Get to a doctor asap if you can. Best of luck!
Thanks for your reply Wow! You have been through it. My appointment isn't till end of March but hopefully the IBD nurses will get it brought forward
Will let you know.
Thanks again x
02-22-2018, 08:15 PM   #1780
cmack
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Good luck Bev. I hope you can be seen sooner.
04-27-2018, 06:26 PM   #1781
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∑ Stoma
HELP PLEASE I had a temp stoma in place following some major surgery taking out part of my colon and in another spot part of my illium. I have a problem and was wondering if anyone might know what to do cos medical staff seeing me don't. The resulting wound once the stoma was reversed will not heal - 4 months down the track I still have a 5cm x 1cm sinus hole that shows no sign of change after it healed from 9cms deep in the first couple of weeks. It is being packed, not packed, packed every day, left for 4 days - nothing works. There is no infection although it was badly infected requiring hospital intervention to begin with. Has anyone got any experience with anything similar? I'm at my wits end - it hurts!
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04-27-2018, 06:35 PM   #1782
ronroush7
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Maybe you should see another doctor. Hope you feel better soon. Keep us posted on how you are.

04-27-2018, 07:20 PM   #1783
cmack
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I would ask the doctor for something to relieve pain, also I would make sure to remain closely monitored by a doctor. You could ask about having a wound care specialist too.
04-28-2018, 08:39 PM   #1784
Lynda Lynda
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I had an Anal Fistulectomy in 1992. I had no idea what was going on. My colon/rectal surgeon told me I had a fistula and needed an operation. I said "ok" and had the operation. I never researched anything and no doctor ever told me that anal fistulas had anything to do with Inflammatory Bowel Disease. ( I actually had the fistula, draining, used a mini-pad, for a year before I even went to the doctor! )

I had a Rectal Abscess surgery in 2002 and I never asked questions and the General Surgeon and my Primary Care Doctor did not tell me what causes a Rectal Abscess.
( sigh )
04-28-2018, 10:57 PM   #1785
cmack
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I had an Anal Fistulectomy in 1992. I had no idea what was going on. My colon/rectal surgeon told me I had a fistula and needed an operation. I said "ok" and had the operation. I never researched anything and no doctor ever told me that anal fistulas had anything to do with Inflammatory Bowel Disease. ( I actually had the fistula, draining, used a mini-pad, for a year before I even went to the doctor! )

I had a Rectal Abscess surgery in 2002 and I never asked questions and the General Surgeon and my Primary Care Doctor did not tell me what causes a Rectal Abscess.
( sigh )
This type of thing is far too common. I was in a similar state of disinformation at the beginning of my illness.
10-12-2018, 08:40 PM   #1786
prizndoc
 
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My husband has been suffering from an enterocutaneous fistula (intestine) for the past four months. Very long story short, he cannot undergo surgery for it. It was not healing. They tried clipping it to no avail. Drs were considering "gluing" it (another term is "plugging" it) but didn't have much experience with either procedure. In the meantime, we purchased a mat that emits electromagnetic waves - purpose being to promote better blood circulation. (Blood does not circulate well in injured areas. Blood is necessary bc it provides the injured area with necessary white and red blood cells.) After the first application he felt he had a little bit more energy. By the second day he had a hole form in the abdomen from which he started oozing pus- and today's the 6 day and he's still draining pus. Once he started getting rid of the infection in his body his fistula's discharge started to decrease. Today he discharged 1 ounce in a 16 hour period- he was discharging up to 62 ounces in a day! We're waiting to see if the discharge stops completely in the next few days. We're sharing this information bc we're hoping to provide hope to others. We attribute this improvement to his use of the mat. It has been a life changer for us. I encourage all of you to look into this and hopefully you have a similar result. Get the best mat that emits the best electromagnetic currents to stimulate blood flow.
10-13-2018, 08:43 PM   #1787
Dyana
 
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HELP PLEASE I had a temp stoma in place following some major surgery taking out part of my colon and in another spot part of my illium. I have a problem and was wondering if anyone might know what to do cos medical staff seeing me don't. The resulting wound once the stoma was reversed will not heal - 4 months down the track I still have a 5cm x 1cm sinus hole that shows no sign of change after it healed from 9cms deep in the first couple of weeks. It is being packed, not packed, packed every day, left for 4 days - nothing works. There is no infection although it was badly infected requiring hospital intervention to begin with. Has anyone got any experience with anything similar? I'm at my wits end - it hurts!
I also has an Illiostomy and reversal and it took months to heal. 3 different times it reopened- water like pockets would form under the skin and burst. The first time I was sitting on the sofa and all of a sudden I was soaking wet. - I had no idea what happened and called the surgeons office. They knew right away what it was and were not concerned. I drove the 45 mintues into the office and they redressed it- weird. The wound care specialist used "silver nitrate" and repacked it with a wick. I would redress and wick the wound daily. They did this repeatedly- like once a week and each time it would heal a little more- until the wound was not deep enough to wick anymore and weeks later finally closed- heck of a scar. good luck
-Dyana
10-16-2018, 07:07 PM   #1788
exit4
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To JennyT
I had ileostomy reversal. My wound took about 4 months to stop draining. I had to go on antibiotics due to developing infection in the wound. It finally closed at about 5 months.
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