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Fistulas, Fissures and Abscesses Support Group

So I have had what I think is a hemorrhoid. It's a bump maybe close to the size of a dime, its external. Mostly but right on the cusp of my anus. I went to Reno(much higher altitude I live below sea level, really lol) a couple weeks before my surgery and this hemorrhoid popped. It leaks out yellow and greenish pus several times a day still. I just got out of the hospital from having a partial colectomy I should have had them check it up then. I'm wondering if maybe this is a little abscess. I have had internal hemorrhoid show up on my scopes closer to the anus before but I developed this little thing after tapping off prednisone.

Can hemorrhoids do this? Is is sounding like an abscess?

I emailed my GI AND HE said since I haven't been able to do bathtub soaks until now post surgery I should try that and come in if the drainage continues. In total since getting off prednisone it's been a month and three weeks dealing with this thing since popping. It has light blood and clear liquid after a BM. During the day still has plenty of greenish yellowish viscous pus coming out. I have to use the restroom just to wipe up several times a day. I was told active disease was gone after surgery. Waiting to hear back from my surgeon he's out for a day on if he looked down my colon too and didn't see fistula etc.
 

cmack

Moderator
Staff member
jcashen,

It sounds like an abscess that has burst. If it was a hemi it would have been blood not what you described. I would get it looked at by a doctor as soon as possible. These things can turn ugly in a hurry. Let me know how you are making out.


Talk to me any time. I have had problems like this before.

cmack
 
Thanks cmack I just had 40% of my colon removed and was told all active disease is gone unfortunately I think this slipped under the radar as I was told probably hemi in a email. The pain has also been gone since bursting. I know it's gotta be different for everyone but an abscess usually comes before a fistula right? And how long could it take for a fistula to form from a burst abscess? Or in your experience at least. Thank you so much. Going to get it looked at asap.
 

cmack

Moderator
Staff member
jcashen,

Yes, usually an abscess forces pus and nasty stuff out of it and that is when you can get a fistula. It tries to force the pressure which ever way it can until it comes out somewhere. That is called a fistulous tract if it makes it's way to the surface and pushes its way out, of either your skin or somewhere else inside of your body. You don't always get a fistula from an abscess that bursts, it hopefully came out close to where the abscess is. I think the doctor will end up having to do something to prevent the same abscess from getting worse. I hope it is only minor. The only real way to know is to be examined and have tests done. Time is of the essence.

Keep us updated,


I will keep you in my thoughts and prayers,

cmack
 
So I'm just curious how long everyone takes to heal after surgery? I had a sphincterotomy plus hemmorhoids removed 8 weeks ago, and I'm still sore! I read different things online about how long it should take.. I mean could it be 7 months? My doc will say these things take time... but gosh it gets old.
 

cmack

Moderator
Staff member
Harper,

It is such a tender spot with lots of nerves running though the area. There are also a lot of germs so the healing is slow, at least for me it was. I think it took me six months to a year for my sphincterotomy surgeries to feel good enough to be able to ride a bike. Everybody heals at a different rate so it is hard to say for sure. I'm not surprised that you still have some pain 8 weeks out. I feel for you bud.

I hope things keep getting better and you can get back to being pain free. If the pain increases for no good reason(running or exercise may rile it up a bit, that is normal) you should be examined by a doctor to make sure there are no complications going on.

I wish you all the very best, give me a shout any time,



Your teammate,

cmack
 
Thanks for the response! I just want to know that I'ds normal to still be healing. And to be sore.. most days are ok, but there are some days I throb for awhile. It's like just when I think it's healing it hurts again. I think I'm just healing, I need the CRS in April again. If I tell him still sore he will prob say the same thing... it takes time...
I'm going to start running a bunch soon, honestly rubbing and walking make me feel better than sitting.
 
so what kind of complications can there be? That's what makes me nervous.. I'm pretty sure the pain (throb) I feel is normal to healing.
 

cmack

Moderator
Staff member
Harper,

I would be concerned if you feel pressure or if the pain overall gets worse and not better.
It will be sore for a while but it should slowly ease off on you.

All the best,

cmack
 
Ok, some days are bad and some days are good. Some days throb and some days don't. Just varies.
I don't have any bleeding which is good.
Just tired of it all. It's like enough already!
 

cmack

Moderator
Staff member
Hi Harper,

I can totally understand your feelings. It is the literal version of a pain in the butt!
Keep in touch, I'll try and help you along as much as I can. Heat speeds the healing process, you may want to try a heating pad and see if it helps.


May many pain free days await you,

cmack
 
Hi all.

can I ask for your opinons please. I had an advancement flap procedure in January and was having some problems. I ended up with an infection and in hospital . Had an eua and the procedure had failed and they put a seton in.
The guy that done the procedure is not my surgeon as she was on leave. He said to get rid of my fistula he would have to lay it open and that would ruin me as I wouls become incontinent. He said to much muscle involved. He was straight to the point and said he would not do It as he cares about his paitients quality of life.
I see my surgeon in clinic and said can I have a temporary bag that you said you would do if the procedure failed as I have now had 22 pocedures and have no quality of life. She now says about laying the fistula open. I told her what the other surgeon said and she said I have nothing to loose.
She is calling mevin two weeks and I really don't know to do. My muscles are weak enough and if I have this procedure can the fistula reaccure.
sorry for the long post.
kelly xxx
 

cmack

Moderator
Staff member
kelly,

I was in the same situation regarding the incontinence. Which sphincter is involved? The inner or the outer? I would ask for a cutting seton to be placed, is what I'm thinking right now. It is an option that keeps your muscle from being severed. Hit me back. I had my outer sphincter severed and now I'm considered disabled due to surgical procedures(not good). I would like it if that doesn't happen to you. Let's see if we can figure this out.

your friend who cares,

cmack
 
cmack

Thankyou for your reply, Its going through both sphincters, a transphincteric fistula. She did mention about a cutting seton when we see her in clinic and she said she wouldn't do one so I guess that is something I could ask when she calls me. What surgical procedures have you had if you don't mind me asking? She did mention if I was left incontinent there were surgical procedures that could be done. Do you still have fistulas now? Thankyou so much for your support.

Kelly xx
 

cmack

Moderator
Staff member
kelly,

My fistulas finally healed. At least I hope they did, there are no signs of anything going on with me now. I am incontinent though, because too much muscle was severed and splayed open. I had a lot of fistulotomy's and abscess drainage surgeries. I think I also had the flap as well. Man was I doped up though, some of it is a big blur. I'm not completely sure if the flap was performed but I discussed it in detail with my general surgeon. I'm not sure why they couldn't do a cutting seton on you.... that puzzles me. If I could go back and do it over I probably would have tried the cutting seton or a temporary ostomy. I know it sounds radical, but you really don't want to have all that muscle permanently destroyed like I did. I think I just got desperate and said do whatever it takes to make the fistula go away. The cutting seton seems like the best idea to me me but there may be a reason that it cannot be done. I think you need another opinion for sure, maybe several. This is a serious gamble, involving the quality of rest of your life. I take this very seriously. I want you to succeed.

I think my fistulas may have also been through both sphincters. All I really know is I was a serious mess for several years over it. Demerol doesn't serve the memory very well. I will try my best to answer your questions. I am very concerned about you.


Keep in touch, two heads are better than one,

cmack
 
Hi cmack


Glad your fistulas have healed. I have have and lots of abscess drained and fistulotomies. I have had the lift procedure, the plug, a bio lift and a flap procedure that have all failed. My muscles are so weak and I am already having accidents. I currently have a seton in. I have an appointment with my dr Monday and im going to see if he can send me somewhere for another opinion. Like you say this is my life we are talking about.
I have been suffering with this for nearly 4 years now and its effecting all aspects of my life. I appericiate your input, its nice to speak to someone that understands what I am going through.

Your right two heads are better than one
Kelly x
 
Guys, I need your advice please. I am not sure on what to expect with the fistula I have.

Exactly 2 months ago, I had an abscess drained and the doctors suspected fistula. I was sent home and that wound is pretty much 95% healed with a small hole remaining but there is no drainage.

Exactly 1 month ago from today, I had another abscess drained and was told it was quite deep (5cm deep) and they suspected a fistula but wasn't 100% sure. I am scheduled for an MRI in June to examine the fistula and I am having daily dressings done. Today, I went in for the dressing and the nurse told me the base of the wound is clean and healing nicely but there is a canal and decided to examine the canal with a syringe and flush out the pus leaking. Although the pus leakage has decreased drastically over the month, I am still having some pus discharge. The nurse confirmed it to be a fistula today though she suggested waiting for my follow-up with the surgeon/MRI results to be absolutely sure of treatment options.

Now my question is I have had a fistula 4 years ago that healed up on its own with no medication/surgery (took approx 6 months). At that time, I didn't even know what a fistula/abscess was and I never gave it much thought as I didn't even need an I&D for the abscess 4 years ago.

Since having the I&D procedure done this year, I am extremely afraid of what is about to come. I am currently on Prednisolone (40mg) and a few antibiotics while the wound is still healing. I prefer no surgery on the fistula so what are my options? I heard Azathioprine could help with healing? Since I have mild incontinence, should I press for fibrin glue if I really need to operate on the fistula? What are the success rate?

Really appreciate your input please.
 

cmack

Moderator
Staff member
Hi Kancer,

I'm sorry to hear about the fistula. That isn't cool. I never tried the glue because my surgeon didn't think it would work as my fistula had multiple tracts. I never had Pred or Aza, so I can't comment there.

Sometimes they heal themselves, you had one heal before so maybe you will be lucky. I hope that is the case this time. I think they need to bump you ahead for the MRI. Could you call the surgeon and report the new news? I guess the glue is the least invasive so you might want to try it. I think June is too long to wait. I hope they can get you in for imaging before that.



I wish you the very best, keep in touch.

cmack
 
Hello everyone, just want to share my 2 yrs ongoing procedures for my rectovaginal fistula. I have had 15 surgeries in the past 2 yrs an feb. 10 was the last one. My colorectal dr. Put over 40 stitches in my rectum to fix the plug he implanted from the prior surgery that I told him i didn't want because it only has a 10% success rate. Well I'm in so much pain in on 20 mg roxicetes, 20 mg oxicotton an 7.5 mg Percocet daily. I have an ileostomy with a huge parastomal hernia due to this stupid fistula. I have had a gracils muscle transfer, labia fat transfer an dozens of flaps to try an close this pin size hole in my lower part in between my rectum an vagina. These stitches I have now are like wire an poke me all day long. I have had numerous infections after each surgery an I'm on flagile now aswell as all my other meds. My current stitches will take 6 mo. To dissolve an I'm on bed rest for the next 3 mo. Can't drive barely walk can't sit up an it's been so exhausting an overwhelming on me my husband an my whole family. I ended up having to leave my job an put my med school on hold. An I only have 4 mo. Left for school but I have to be there everyday an can't so my quality of life is not so good. I try my hardest to stay positive but it's not easy. I have faith in God that this is all for a reason. But I have a hard time trying to see the bigger picture. I got my fistula due to a fibroid removal surgery an they went vaginally an cute me low but it has been a long 2 yrs. I'm praying this is the last surgery for the rectovaginal fistula so I can finally have the ileostomy reversal an hernia repaired. I'm 38 an I'm still young. But Dr said no sex at all for 6 mo. An then after he does the contrast due to see if it's closed we could talk about when me an my husband could be intament again. Well I know there alot of other things we can do but Damn we only been married for 2 an a half yrs so all we know is waiting lol. Sucks but true. I hate to complain because I know things could always be worst. So if anyone wants info on these similar surgeries I could help in giving I some good advice an what to expect. Like I said i have had 15 surgeries. So God bless an know it's not the end of the world. Private message me and I will try to help with advice I can. Thanks for this site it's a great outlet for getting things off the chest. It's literally been a pain in my ass for a long time.
 
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cmack i wish it was that simple but I have had several colorectal surgeons and plastic surgeons the best in this state that are extremely experienced in rectovaginal fistulas working with me. These things are very complicated. I am anemic an have alot of other health issues that make it harder for my body to heal itself like some people. An other Dr's won't finish something another dr started here in this state. I may have to live with my ileostomy forever but my team has informed me either way they will fix the para hernia within the next yr. So I'm excited about that. I suffered with depression an was medicated for that when this first started but I found that I was better off without the medication for depression and to face my problems head on an start changing the way I think. It's hard some days but most days I try to be positive. It is what it is. An complaining won't fix the fistula but laughing an staying happy makes for a better day. At least I'm alive an can watch my kids grow into the amazing people they are. An joining this support group has givin me hope an faith. Thanks for ur concern hope ur having a good day.
 

cmack

Moderator
Staff member
Hi Megaraldo3,

You are right, a positive outlook does make for a better day. I wish you the best. Hopefully you heal up. I'm a guy but I do know how frustrating fistulas are. Having your vagina involved must be very uncomfortable. I can't possibly imagine!


Stay positive,

cmack
 
hey guys, so i have a peri anal fistula with seton. Benn a few months now. I believe the fistula stopped draining. Haven't seen signs in weeks. Is this good or bad? currently taking remade
 
About a month. Last we checked it was still active but doing better. Have my next appointment in April, so didn't know if I should email him or not.
 
hey guys, so i have a peri anal fistula with seton. Benn a few months now. I believe the fistula stopped draining. Haven't seen signs in weeks. Is this good or bad? currently taking remade
This could possibly be a good thing, as long as your not in pain. Mine stopped draining about 10 days ago but then it started hurting so I've got to have an EUA tomorrow to check for infection. Fingers crossed yours is good news!
 
so I saw my I saw my CRS last week, and he isn't sure why I am not healed yet ( 3 months post LES). He told me it could just be that the fissure is still open. He ordered me to get a MRI. He said that could show if there is a fistula, although he doesn't think there is one.. its been three months. I still bleed from time to time and I throb. I think the fissure re opened after a hard BM.. and its just open again..
would u go for a second opinion or get the MRI? he also gave me a prescription for nifedipine- which hasn't really done much.
 
hi everyone, so I'm looking for suggestions on how not to have 5 BM a day. I wish I could fully go at one time, but it takes so many times. its like I need to get up - wait a half n hour- go again - this process is like 4 times, then I can actually leave the house. I think its making the site of the surgery (LES) take longer to heal.
I am taking 3 Colace a day, I eat a ton of fiber, drink plenty of water...im so lost and it really controls my life!
Any suggestions how to get down to 1 BM a day? Like fully go just one time around...
also I do not have Crohn's...
 
I am not sure. Maybe you could try a bland diet for a while. Call your doctor to see if he has any suggestions. Also, I know that it has taken me longer to heal because of the Crohns Disease
 
hi everyone, so I'm looking for suggestions on how not to have 5 BM a day. I wish I could fully go at one time, but it takes so many times. its like I need to get up - wait a half n hour- go again - this process is like 4 times, then I can actually leave the house. I think its making the site of the surgery (LES) take longer to heal.
I am taking 3 Colace a day, I eat a ton of fiber, drink plenty of water...im so lost and it really controls my life!
Any suggestions how to get down to 1 BM a day? Like fully go just one time around...
also I do not have Crohn's...
My doctor(he's the head gastro at Tufts in Boston) told me not to take Colace but take mirilax if I need it. You cant take it every day bec. it doesn't work too well taken that much but he was right, Colace is very hard on the stomach and I used to get pain from it. mirilax there's no pain. just wanted to give you a heads up about Colace. Not sure how to fix the other problem you're having though, sorry.
 

cmack

Moderator
Staff member
Hi Harper,

I was told to use lactulose as directed on the bottle after surgeries. Maybe you could ask your doctor about that. It is a stool softener and it didn't cause me any side effects. I'm not sure about how to reduce the frequency of bm's though. I wish I knew too.


I hope you find a solution,

cmack
 
ok, so I got a second opinion today and this surgeon thinks the first surgeon might not have cut deep enough and that's why I still have the fissure and he thinks if I don't feel better in a week I should do another synphcteromty on the other side.... welp.. I don't know what to do, has anyone experienced this?
 

cmack

Moderator
Staff member
Hi, Harper,

I have had similar problems before. They probably missed something the first time. I do think swelling could be a factor.

I'm hoping the best for you, keep in touch

cmack
 
Hi, Harper,

I have had similar problems before. They probably missed something the first time. I do think swelling could be a factor.

I'm hoping the best for you, keep in touch

cmack

Did you have to get the surgery again? I'm wondering if eventually I'll heal in my own without the surgery... again....
 

cmack

Moderator
Staff member
Hi Harper,

It might heal, I certainly hope it does. I would have it monitored just in case though. You can never be too careful with these things, they can really turn wicked in a hurry. Listen to your body, you know it best.


Wishing you good health,

cmack
 
Wow, reading some of these posts has really scared Me! I had two abscesses removed on the June 25th this year, I had a 'inspection' at the end of August.
I am virtually pain free except for the occasional twinge and was told that my setons were working but did not tell me for how long they would be staying in for.
Now reading some of the horror (to me) stories feel totally uneasy about my prognosis.

Help.
 

cmack

Moderator
Staff member
The setons are only a minor inconvenience compared to more surgery. Mine were in for several years,then I got back to feeling no pain in the area. You will heal, don't be scared, if you do the right things you will feel better.
 

cmack

Moderator
Staff member
Hi Quintonrich,

Welcome, you can pm me any time or talk on this thread. I enjoy talking with people like you. Been down the same road, maybe I can help you out a bit.

Kind regards,

Chris
 
The setons are only a minor inconvenience compared to more surgery. Mine were in for several years,then I got back to feeling no pain in the area. You will heal, don't be scared, if you do the right things you will feel better.
Did you really have your setons in for several years?! I've had 1 in since February and then had 2 more put in in May of this year...I want them out...please don't say years :stinks:
 

cmack

Moderator
Staff member
Sometimes it is less time than that. I think it really depends how deep they are and how long the fistula tract is. Also if they are cutting setons or regular smooth ones. I got through it, you will too. It just sucks for the short term. (relatively speaking, I know it seems like forever right now) I understand.
 
I am having surgery to remove multiple fistulas in stomach and small and large intestine next week. Surgeon said to expect temporary Ostomy for about 6 weeks due to tissue damage from long term prednisone use. Anybody have advice? I am getting really nervous.
 
Last Saturday I had further surgery after being examined, the plan was to have the setons out and the fistula's (I have a branch) exposed. My surgeon would only remove one as he was not prepared to risk any sphincter damage. End result is, I have one exposed fistula and a new tighter seton with a planned further procedure later.
Seems to be going OK, with very little leakage and virtually no pain.
 
Did you really have your setons in for several years?! I've had 1 in since February and then had 2 more put in in May of this year...I want them out...please don't say years :stinks:
I've had Setons in since 2011/2013. Eventually, you kind of forget they're in 😬 I prefer the Seton to all the abscessing 🙂
 
I am having surgery to remove multiple fistulas in stomach and small and large intestine next week. Surgeon said to expect temporary Ostomy for about 6 weeks due to tissue damage from long term prednisone use. Anybody have advice? I am getting really nervous.
No advice, just support. You will likely get more response on the ostomy thread. Hope everything goes okay!
 
Good luck with your surgery 😊. I know feeling scared and nervous is hard on top of what’s happening but you will get through it. You are not alone *hugs* 😊
 
Hi everyone.

Is been a while since I have posted on here but I was hoping for some advice and reassurance I suppose.

I have had a fistula in ano for 18 months now, which developed from a peiranal abscess three months before that. After what feels like an age waiting for some kind of answer about treatment, I have a surgery date for a week next Tuesday.

This has left me with mixed feelings. Having lived with this condition now for so long, it has almost become a part of me and I’ve gotten used to dealing with it if that makes sense. I have a pretty predictable cycle of going for about 4 weeks with mild drainage with some minor pain, then I’ll have a flare where the opening heals and it swells causing uncomfortable pain for about 24hrs. It then opens again and the cycle continues.

I have pain medication to reduce the pain when needed and my medication to control my IBS has been working great recently. I’ve identified some further trigger foods and have reduced / eliminated these and I’ve felt a bit better with my bowel health as a result. As mentioned in my previous posts, all the tests performed for Crohns, IBD etc came back negative.

Sorry for the long post but this is what has me worried. I have been advised that surgery is the best and only option to achieve healing of the fistula. My surgeon said it is a simple fistula and has advised I take a minimum of 2 weeks off work to allow for some recovery before returning to work. I am a Teaching assistant who works with children with SEN. I have been stupid enough to be doing lots of research online and it’s getting me worried as lots of people seem to have very long and complicated recoveries, some not healing at all. I do understand that healing can be more difficult for people with Crohns or IBD so I may be reading too much into it. It just scares me the though of having surgery and endeing up worse off.

I’m not sure what I’m asking really, just feel very nervous about the whole thing and don’t want to go ahead with this if it could create more issues than it solves. Is it risky to not have a fistula operated on?

Thanks so much for reading and for any advice you can offer.

Andy
 
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Hi Andy,
It's all according where the fistula is positioned, if it's too close to the sphincter as in my case I had two setons inserted. That was June this year, last weekend I had one seton removed because one of my two fistula's had healed enough for it to safely be layed open to heal. The second could not be risked and will be re-examined in eight weeks.
I have now had three surgical procedures, after a couple of days on pain killers am OK, but I do have a couple of weeks off work.
Hope this helps
Richard.
 

cmack

Moderator
Staff member
Hi Andy,

I have had several, like 14 surgeries for abscesses/fistulas. What finally got me healed was having a cutting seton placed by a colorectal surgeon. I wish you the very best. I think you could rest assured that they won't make things worse. Be sure to discuss this with your surgeon and tell him if it is too risky to err on the side of caution. That's what I did.


Finest regards,

Chris
 
Hi,

Just a quick update. Post surgery now, partial lay open with seton placement was the result. 1 week post op and still feeling lots of pain and discomfort. Can’t quite imagine being back in work in a weeks time. Will have to see how things are by this weekend I think then reevaluate if needed.

I guess everyone’s healing times are different. Most of the discomfort comes during and after using the toilet which I suppose should be expected.

Hope everyone is well

Andy
 
Hi,

Just a quick update. Post surgery now, partial lay open with seton placement was the result. 1 week post op and still feeling lots of pain and discomfort. Can’t quite imagine being back in work in a weeks time. Will have to see how things are by this weekend I think then reevaluate if needed.

I guess everyone’s healing times are different. Most of the discomfort comes during and after using the toilet which I suppose should be expected.

Hope everyone is well

Andy
Best to you
 

cmack

Moderator
Staff member
Hi,

Just a quick update. Post surgery now, partial lay open with seton placement was the result. 1 week post op and still feeling lots of pain and discomfort. Can’t quite imagine being back in work in a weeks time. Will have to see how things are by this weekend I think then reevaluate if needed.

I guess everyone’s healing times are different. Most of the discomfort comes during and after using the toilet which I suppose should be expected.

Hope everyone is well

Andy
Good to hear from you Andy,

The worst part is over. I hope things go easy for you, if not, feel free to ask anything you like. I have had some experience with all different setons.


Feel better soon,

Chris
 
Thanks Chris

I'm still struggling with the pain despite taking pain relief. Thought it had started to ease off but tonight it has gotten very sore and sensitive again. The Seton hurts the area if I touch it. Is this normal a week after surgery. Like I say my GP says everything looked ok today but it doesn't feel ok.

I'm not sure what type of Seton I have either so will have to call the hospital tomorrow to find out I think. My CRS said that it may fall out of its own accord before my 6 week post op appointment but that's seems wrong to me from what others have posted. Though he did say another procedure may be needed depending on healing at that point.

Feeling a bit stressed about the whole thing as I want expecting to have to deal with a Seton.
 

cmack

Moderator
Staff member
Yes it is normal to still be in pain, *however. *You need to make sure you have enough pain medication. It will be sore for a while longer, although things should start getting better pain wise very soon. It's a sensitive area. It will be less painful and less noticeable, each day for a while. I used lidocaine jelly and it numbed it too.
 
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.
 
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
 
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
 
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! 🙂
 

cmack

Moderator
Staff member
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!
 
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.
 
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?

Everyone’s experience is different but I can empathise with the experience of wind passing through it and causing pain. I’m 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 I’m 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, I’ve found sitz baths have helped things along a lot. However I’m 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 don’t tak my word for it. My abscess developed into a fistula as it wasn’t 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
 
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!
 
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
 
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!
 

Lynda Lynda

Senior Member
Location
N/A
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 )
 

cmack

Moderator
Staff member
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.
 
Hope for Enterocutaneous Fistulas- new approach

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.
 
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
 
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.
 
My last MRI showed a blind fistula in my ileum. It is surrounded by strictures. Also I had strictureplasty 6 years ago for previous strictures, probably in the same area. Humira failed to prevent inflammation and narrowing after 2 years, and Entyvio failed after another 2 years too.

Now my docs highly recommend surgery to remove arount 12 inches of ileum as they say medications can't help anymore. They also say 12 inches removed should not change much my quality of life.



What do you think?
 
Guerrero, Hi there. As someone who has been plagued with strictures I can understand this. How are you feeling atm? Strictures have that nasty habit of closing up & causing obstruction.
I would be asking the Dr's if the chance of obstruction is high? Also what surgeries have you had previously? Dr's can be blasé @ times, this is going to require a great deal of thought on your part I feel.
Best Wishes
Grant
 
I have some discomfort while digesting and sometimes a lot of noise and growling, but nothing too crazy so far...
I guess my Dr’s are more worried about the fistula and my bleeding history rather than the obstruction now.

My previous surgery was a strictureplasty for 7 strictures... i guess the battle ground is all in the same area more or less...
 

cmack

Moderator
Staff member
You have my support, Guerrero. I would seek another opinion, surgery isn't always the best option. I think I could have done without a couple of my surgeries... I will never know because I always put blind trust in my doctors. Try not to make my mistake because sometimes they are wrong.
 
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