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03-17-2013, 10:28 AM   #91
hetzbaby
 
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For those of you others with perianal seton, how do you know when its stopped draining enough to see the surgeon again? I have to pay a hundred dollar copay each time I go in because I don't have insurance so I'd like to be sure.
03-21-2013, 06:41 AM   #92
millietipper90
 
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I dont now much about Crohn's cus i havant had it very long but this is very halpful. thank u
03-21-2013, 07:08 AM   #93
aleciabc09
 
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Sorry for everyone's problems today. I am in a flare and on TPN if it doesn't work I will have to have surgery, I also have a fistula that may heal while I am not eating. I am supposed to get hyperberic treatment but don't know if insurance will pay. But you know I feel better than I've felt ever sense I was Diagnosed, I think I have accepted whatever happens happens and all is well. Keep your chin up, God will get us through.
03-21-2013, 07:42 AM   #94
alisonwilkinson
 
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Hi I think I have it bad sometimes. I have read through past posts and I have nothing at all. All I have is moderate active Crohns disease. I have fissures and anal skin tags but that is it. I am extremely lucky. In 14 years no abscesses or fistulas. I feel for all of you suffering. Take care everyone.

Alison
03-21-2013, 07:58 AM   #95
AlliRuns
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For those of you others with perianal seton, how do you know when its stopped draining enough to see the surgeon again? I have to pay a hundred dollar copay each time I go in because I don't have insurance so I'd like to be sure.
Getting back in to see my surgeon was so difficult that I didn't get to decide, I got the appointment cards in the mail. I was still getting drainage when my setons came out, though it wasn't that much, can't really quantify it, but I was using 2-3 panty liners a day.
03-28-2013, 12:23 PM   #96
myriahdawn
 
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HELP - I have searched everywhere and I can't seem to find anything on this...

I started Humira about a month ago & my doc felt my fistula looked healed enough that my seton came out about 2 weeks ago!!! Everything has been going well, but the exit hole is soooo irritated and swollen. The area around the fistula exit is not hard or tender - it is specifically the exit hole itself. It is starting to look almost like a bubble or something... Is this normal healing process and is there anything that can help??? It is so sensitive. : (

PS - It is still draining, but really only after a sitz bath or when I push on the area around it. I'm very frustrated.
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- myriahdawn: 32/female

Crohn's: Diagnosed 4/2011 (Ileum & Colon)
Med: Humira
Vitamins: fish oil, vitamin D, B12 & a multi-vitamin
Surgeries: 2012-2013: Ano-rectal fistula repair & repair again & etc.... 7/10/14 - got a plug/flap combo!!!
03-28-2013, 01:40 PM   #97
Misseireann
 
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I don't really have experience with your situation, as nearly 2 years after seton removal, my fistulas are still draining. I think it would be a good idea to talk to your doctor. Good luck and hugs!!!
03-28-2013, 01:49 PM   #98
hetzbaby
 
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Getting back in to see my surgeon was so difficult that I didn't get to decide, I got the appointment cards in the mail. I was still getting drainage when my setons came out, though it wasn't that much, can't really quantify it, but I was using 2-3 panty liners a day.

I don't even have to use gauze or anything anymore, I just make sure I wipe well since the seton is in the way. That's why I'm wondering if its time to see him again.
04-03-2013, 01:43 AM   #99
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Hi everyone! My husband has been suffering from all of the above (fistulas, abscesses, fissures) since about August 2012. Had a surgery to drain one of his abscesses at the very end of 2012, and that didn't do any good whatsoever. He just kept getting more and more, worse and worse. So, he just recently had his first ostomy, and we're hoping that his fistulas/abscesses/fissures will heal up some.

My question is: Have you had surgery/surgeries to help with your fistulas/abscesses/fissures? What helped? What didn't?
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I don't have Crohn's, but I do suffer from it...

Husband diagnosed 2008
Married 2011
Abscess Drainage Procedure 12-28-2012
Ileostomy 3-29-2013
04-03-2013, 04:36 AM   #100
ehCrohnie
 
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I am as happy as one can be to find this thread!

I had my first fistula almost 20 yrs ago. It's presentation actually ended up saving my life and helping with a quick diagnosis of Crohn's. It resolved on it's own after starting me on medication. About 1.5 yrs ago I started having fistula symptoms. The CRS, GI MD and myself decided to try and medically manage it (I was already on humira) as I really wanted to avoid surgery. We added antibiotics (flagyl and cipro). I had to stop the flagyl after developing severe neuropathy (which resolved immediately after stopping the med thankfully). The fistula kind of got better and didn't really bother me much but it just seemed to come and go and never really healed. I was just tired of dealing with it. So, the beginning of Feb 2013 I started Canasa suppositories to target the rectum. I had to stop after 5 days. I've never experienced such intense, excruciating pain. I'm not sure if the canasa contributed to it or my symptoms just progressed but I developed an abscess right by my rectum. Holy crap that was the worst pain of my life. It was like a war zone down there and my rectum was really really angry. At this point, I would do anything I could including surgery. I was put on prednisone, levaquin and a lower dose of flagyl. I had a seton placed 3/28/13. I really was stressed beforehand and shed a lot of tears. I was worried they were going to find multiple complications and suggest further surgery, colostomy, etc. I had read a number of really concerning personal stories re: setons the weeks leading up which didn't really help with the anxiety. I have to say I'm only one week out but I have had no real issues. The outpatient procedure turned into a one night admission, which was great. I would have been home second guessing what I was doing but instead I had access to IV pain meds, anticoagulants, and nurses to change my bandages. I even obtained the best night sleep that I have ever had during a hospitalization. I have had minimal pain if you could even call it that (I'd rank it at most a 1-2 with 10 being the worst). I took a week off work just take it easy but I probably could have gone back sooner. I think I went in expecting the worst and came out on top. I'm so much better than I was 3 weeks ago and if I had known it would have been this easy I would have considered this months ago. I do realize I'm only one week out but the power of positive thinking.

I'm just experimenting now with what kind of bandages work best, what's the handiest way to clean the area when you are out and about, etc so tips would be greatly appreciated. Also, my CRS said he probably wouldn't consider removing the seton for 6-9 months. I know some people seem to have them in indefinitely, I was just trying to get an idea on how long others had theirs. I'll do whatever it takes not to try and prevent another abscess.

Thanks for any input!
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Crohn's: Diagnosed 01/1994

Current Meds: Humira QOW, Asacol HD 800mg 3 PO BID, Prednisone 30 mg QD, Levaquin 500 mg QD

Vitamins: Vitamin D, Calcium

Surgeries: 03/28/13 fistula repair (seton placement)
04-03-2013, 11:28 AM   #101
myriahdawn
 
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PREV POST: Everything has been going well, but the exit hole is soooo irritated and swollen. The area around the fistula exit is not hard or tender - it is specifically the exit hole itself. It is starting to look almost like a bubble or something... Is this normal healing process and is there anything that can help??? It is so sensitive. : (


UPDATE: saw my doc today and apparently the swelling around the exit hole was scarring and granulation. He chemically cauterized it and said we will need to do it again in 2 weeks. Has anyone else had this done? It was pretty painless... i just hope it helps!
04-03-2013, 11:34 AM   #102
myriahdawn
 
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I am as happy as one can be to find this thread!

I'm just experimenting now with what kind of bandages work best, what's the handiest way to clean the area when you are out and about, etc so tips would be greatly appreciated. Also, my CRS said he probably wouldn't consider removing the seton for 6-9 months. I know some people seem to have them in indefinitely, I was just trying to get an idea on how long others had theirs. I'll do whatever it takes not to try and prevent another abscess.

Thanks for any input!
I prefer gauze that is soft, not the very holey kind. Seems to be easier on such a sensitive area. Also, they took my seton out after about 3 months, but that was sped up by the fact that I started Humira. My CRS took the seton out 2 weeks after starting Humira. So far things have pretty good except for my above post, which he seems to not be too concerned with...

Best thing I can tell ya is to be patient. For me every day this thing seems to act a little different. When it acts up I just do even more sitz baths and sometimes I sit on a heating pad which relieves some of the soreness. I hope you get better soon!!!

PS - stay active, but not too strenuous! I have found that walking seemed to help things drain when it was sore also.
04-03-2013, 12:12 PM   #103
ehCrohnie
 
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Thanks Myriahdawn! I'm glad your procedure today wasn't too painful - hope it helps! I saw my CRS today and everything is looking good. He thinks he did a really good job. I'm pretty stoked that I got the go ahead to start exercising again. I'm a big fan of pilates which i can usually do to some degree no matter how good/bad I feel.
04-03-2013, 01:42 PM   #104
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I use A.R.D Anoperineal Dressings, they seem to be so much softer than gauze and those non-stick gauze pads actually hurt me.

It's great to hear at least some of you are back to minimal or no pain.
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DX: 2002 Ulcerative Colitis
DX: 2012 Crohns-Colitis
DX: 2013 Perianal Fistula (Fistulectomy)
04-05-2013, 01:58 AM   #105
nmgonzo
 
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I currently have 8 setons that were placed on February 1st. I am wondering, for those of you with setons, is there anything I can do to help with the smell? I am still draining but no matter how much I soak or clean, there is always a smell. Any suggestions would be greatly appreciated!
04-05-2013, 03:36 AM   #106
bigtruck
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Not much you can do unfortunately only wash regularly and change the gauze swabs as often as possible, and although you can smell it i doubt if anyone else can! Good luck.
04-09-2013, 12:04 PM   #107
Sailorluna
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UPDATE: saw my doc today and apparently the swelling around the exit hole was scarring and granulation. He chemically cauterized it and said we will need to do it again in 2 weeks. Has anyone else had this done? It was pretty painless... i just hope it helps!
I have had the chemical cauterization done 3 times so far. It's not always painless, seems to depend on how bad the site is at the time.
Hopefully one time will be enough for you. Good luck.
__________________

Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
folic acid
2 lomotil
2 Welchol
B12 injections (monthly)
Remicade

_____
Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
04-09-2013, 12:32 PM   #108
hetzbaby
 
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PREV POST: Everything has been going well, but the exit hole is soooo irritated and swollen. The area around the fistula exit is not hard or tender - it is specifically the exit hole itself. It is starting to look almost like a bubble or something... Is this normal healing process and is there anything that can help??? It is so sensitive. : (


UPDATE: saw my doc today and apparently the swelling around the exit hole was scarring and granulation. He chemically cauterized it and said we will need to do it again in 2 weeks. Has anyone else had this done? It was pretty painless... i just hope it helps!
Why did they chemically cauterize it? Last time I saw my CRS he said I had granulation tissue also and every time something touched said tissue it bled, but he didn't seem too concerned about it. I almost feel like the seton irritates that area & has been inflaming the skin tags that are there.
04-09-2013, 12:37 PM   #109
Sailorluna
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The granulation tissue is "bridging". He said that it is forming in such a way as to split the fistula channel. I am a little less clear on it than I maybe should be. It is at the skin level so I am unsure why it matters to be honest. The plan is for the seton to be removed at the end of the week so I am a bit nervous that this is still happening.
04-09-2013, 01:45 PM   #110
hetzbaby
 
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The granulation tissue is "bridging". He said that it is forming in such a way as to split the fistula channel. I am a little less clear on it than I maybe should be. It is at the skin level so I am unsure why it matters to be honest. The plan is for the seton to be removed at the end of the week so I am a bit nervous that this is still happening.
Mine is at skin level as well as inside. I hope that's not bad. :/ good luck, lady!
04-10-2013, 11:11 PM   #111
Essieluv
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So, I had a fistula a couple years ago and it finally just healed upLately (for the past three or four months) I have had this little bump near my anus that has been hurting. It's not large or anything, but when I push on it I get really bad pain into my back and it's just very sore in general. About once a month, it randomly bleeds for a day, and then feels a tad better. Oh, and it feels like there is pressure where the bump is. I had my colorectal check it out, but she just said to keep an eye on it. So I don't know if I am getting another fistula, or if this is something else (don't know what else it would be, maybe a little abscess)? I do have perianal Crohn's along with Crohn's in my Ileum and now in my colon and small intestine too. Any help would be very appreciated as I am annoyed, in pain, and confused. Thanks
04-11-2013, 12:46 PM   #112
Misseireann
 
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It sounds like it could be a fistula to me... But keeping an eye on it is a good idea. How long have you had the bump? Does it feel like it is getting bigger?
04-11-2013, 02:08 PM   #113
Essieluv
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No the bump doesn't seem to get any larger. I have had it since early December. I have had an abscess before, and it feels like the same kind of pain. It's been really painful the last few days, but I have an appointment with my colorectal in a few weeks, so I hope I can make it until then. I'm just not sure what to do about it...
04-11-2013, 02:51 PM   #114
Misseireann
 
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Hang in there and if it gets to be unbearable, call until you get in right away!
04-17-2013, 10:15 PM   #115
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Hey all! I'm new. Have had seton drains in since August 2012. its been a small nightmare. smelly, painful, and embarassing. i had a perianal abscess that needed to be drained... it was quite large.

im having discomfort with it now and am thinking of going back on steroids. i just want this f-ing drain out of me.
04-17-2013, 10:57 PM   #116
Essieluv
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I hate setons! Mine was very painful, but it did help heal up my perianal fistula and abscess.
04-18-2013, 12:09 AM   #117
smack116
 
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how long did you have them in? im unsure of what to expect as far as how long they generally need to stay in. my surgeon was a jerk.
04-18-2013, 04:33 PM   #118
dgg
 
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Good to see there's a support group for fistulas... sometimes it seems like nobody else can understand how horrible fistulas can be so it's nice to be able to chat with others who really understand. I'm still struggling with a complex horseshoe fistula with 3 setons and I might need another one soon since it seems to be getting worse. I'm getting close to considering a stoma to try and rest my bum for a while. Hopefully one day someone will come up with a cure for this painful part of Crohn's.
04-18-2013, 05:41 PM   #119
Misseireann
 
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Hey all, I'm so sorry that you're having to deal with fistulas like I am. Yes, it is hard and it feels like there are very few who understand. I count myself lucky, as I had three that I think are now down to 2. I've also been in remission for 2 years, and thanking god everyday. Is there anything at all you can think of to help them close naturally? The worst part for me is the burning that happens on the sensitive tissue around the fistulas... I really wish I didn't have so many holes in my body, but hey... All I can do is my best. Courage!!! We CAN do this!!!
04-28-2013, 11:19 PM   #120
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...Is there anything at all you can think of to help them close naturally? The worst part for me is the burning that happens on the sensitive tissue around the fistulas...
This is a great question. I asked my CRS that same question and he had no answers - but of course he is a surgeon, so you know what his cure is. I would be interested too if there is anything natural that can be done to prevent re-occurrence (after surgery).

I definitely remember the burning sensation, that was horrible for sure. That did stop, for me, about one week after I started on 'flagyl". Yes I know that prescription drugs is not the answer your looking for. In my case, I didn't always have the burning sensation. In my mind, I associated it with with recurring infection.

Last edited by Grouchy; 04-28-2013 at 11:47 PM.
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