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Fistulas, Fissures and Abscesses Support Group

Thanks so much for the replies!

I've not been diagnosed with either UC or Crohns, just waiting for my hospital appointment to see if I can finally get some answers. I've been having digestive issues which have gotten progressively worse over the last 18 years. As they have diagnosed my with IBS then everything that ever happens now is always related to that, according to the doctors. This is despite them never sending me for any tests. Only test I've had was sigmoidoscopy which was clear at the time (I had this procedure before the development of the abscess).

I might call the hospital appointment line and see if they can get me in sooner, I will try that this week. Also, thanks for the info about Professor Carlson. I will definitely look into that.

Andy
 
Hearing you all loud and clear. My fistulas and abscesses got so bad that I have recently had my rectum and anus removed and have a permanent colostomy. So far all ok except for one abscess in my psoas region that keeps returning and is stopping the healing of my butt wound.

None of the medications worked and I had an anaphylactic reaction to infliximab( supposed to be best for fistulas) so I had no option as my CRS put it ' that is one wrecked rectum'. Have to say I don't miss being in tears with every BM and having up to 30 BM's a day.

I hate fistulising Crohns!!!
Hi, everyone! I wanted to share a bit of hope and guidance. I have been diagnosed with Crohns (although I have just recently started feeling the typical Crohns symptoms and had to date only dealt with anal abscesses and the weird nose sores, mouth sores and eye issues for the most part). My anal abscesses started in 2008 and I truly thought I would have to live with them for the rest of my life. They were miserable. In February of this year, I had a blood clot in my leg (I may have lupus as this will be my third blood clot) and during my hospital stay, I was introduced to an Infectious Disease Specialist. She actually swabbed the abscesses during my stay and found one particular strain of bacteria within the abscesses and prescribed an antibiotic specifically for that strain of bacteria. Since taking that antibiotic, the abscesses are completely cleared up and no longer weeping like they were for the last 8 years. The colorectal surgeons (nor my gastroenterologist) ever thought to do this and it is certainly worth exploring if you haven't already. It is different than simply taking cipro or flagyl. I've been to alternative doctors and explored every route I could think to take. I didn't want to take an antibiotic because I didn't want to kill my good gut flora but this totally did the trick! I've had the abscesses drained a million times and had surgery but they never placed setons because they couldn't find openings (the surgeons did think they were fistula). I do continue to take Humira. If you can, please seek an Infectious Disease Specialist. I never thought to do it and wouldn't have but she showed up and took control and I'm forever grateful! Best wishes to you all!
 
She actually swabbed the abscesses during my stay and found one particular strain of bacteria within the abscesses and prescribed an antibiotic specifically for that strain of bacteria. Since taking that antibiotic, the abscesses are completely cleared up and no longer weeping like they were for the last 8 years. The colorectal surgeons (nor my gastroenterologist) ever thought to do this and it is certainly worth exploring if you haven't already. It is different than simply taking cipro or flagyl.
Hi Mellie, I am curious, my abscesses have been internal in my rectum (they actually cut through my sphincter muscle to remove one of them). How were they able to swab your abscesses, were they external?
 
Hi mellie,
My son is Being de akin with anal abscesses as well for the past 10 years, and even though we had the GI do a colonoscopy and ask to swap the abscesses they have not done it.
Did they tell you what kind of bacteria they discover you had and what antibiotics did you take.
After reading your post I'm going to look for a infectious disease specialist.
Lizette
 
My apologies for not responding sooner! Normally I get an email if there are any new messages on this thread and I might have missed them when they came in! The surgeon thought I had fistula that closed up but I had two abscesses that were constantly draining near my anus. Honestly, they hurt worse than the blood clot that ran from my groin to my ankle when I was in the hospital and that is what prompted my request to call in the surgeon to drain them. So, if yours are internal and you can get into the surgeon, see if you can have that surgeon partner with an infectious disease specialist to swab the internal abscess. The infectious disease specialist ordered the swabbing and the surgeon swabbed (to my knowledge, I was thankfully out like a light). THOUGH, I will say that I was on a hospice floor (didn't know it at the time, thankfully) and didn't have the highest quality nursing staff. So, when the nurse came in with 10 long cotton swabs, I was souped up on morphine and went willingly into the bathroom and swabbed myself 10 times. By the look on the Infectious Disease Doctor's face, I know that nurse got an earful. HA!!!! The thing is, I never thought to seek out an infectious disease specialist and I don't think most of us have. They have a different skill set than our GI's or Surgeons and are definitely worth speaking with and getting different answers from!
 
Just been to the docs after a pretty bad week with my abscess that isn't healing. I've now been referred to the hospital to see a surgeon for review to see what to do next. I have to phone and choose the hospital to go to. The thing is, I'm still awaiting my GI appointment for further investigation into my bleeding, pain, stomach issues etc so I am wondering if I need to go to the same hospital and department rather than being under different GI specialists at two different hospitals? I asked to go to the regional specialist to my GI issues so should I ask for this regarding the abscess or would I see a different area of specialism for a perianal abscess? Based in uk.

Thanks
 
Just been to the docs after a pretty bad week with my abscess that isn't healing. I've now been referred to the hospital to see a surgeon for review to see what to do next. I have to phone and choose the hospital to go to. The thing is, I'm still awaiting my GI appointment for further investigation into my bleeding, pain, stomach issues etc so I am wondering if I need to go to the same hospital and department rather than being under different GI specialists at two different hospitals? I asked to go to the regional specialist to my GI issues so should I ask for this regarding the abscess or would I see a different area of specialism for a perianal abscess? Based in uk.

Thanks
Starnett
I can only speak from my own experience which can be totally different from yours. However, I do continue to work with my gastroenterologist and my general practitioner. Bringing in an infectious disease specialist was not something I asked for but it was wonderful and something that helped tremendously. Hindsight being 2020 I would've asked for an infectious disease specialist much sooner. Knowing where you are at this point in the game having the opportunity to choose your hospital. I would choose the hospital and speak with the G.I. and the surgeon and ask that they bring in an infectious disease specialist to consult with so that the surgeon can swab the abscesses. Best wishes to you I know you must be in so much pain and discomfort! It is certainly worth seeking additional help.
 
Thanks for the quick reply. I will look at being referred to the same hospital so they can coordinate their efforts more easily. I will mention what you have said about the abscess being swabbed. I'm surprised that my GP has not considered this when offering antibiotics. I suppose we have specialists for a reason though 😉
 
Thanks for the quick reply. I will look at being referred to the same hospital so they can coordinate their efforts more easily. I will mention what you have said about the abscess being swabbed. I'm surprised that my GP has not considered this when offering antibiotics. I suppose we have specialists for a reason though 😉
Starnett, eight years with these blasted things and not one GP or gastroenterologist or colorectal surgeon or alternative doctor or anyone for that matter mentioned swabbing them to determine what type of bacteria was there so they could prescribe the correct antibiotic. It's perplexing to say the least. So, it really excites me to be able to give you this information in the hopes that it can help you and stave off some of the suffering that I've gone through. I really and truly hope it helps. Please please keep me updated!
 
I was suffered from anal fissures in Feb 2014. then I had a surgery to treat it. but until Jun 2014 the wounds wasn't healed. then the doctor asked me to do colonscopy. the results was that i have crohn's disease. then after a courses of steroid doses all my wounds became better.

Nowadays, there is a huge pain when I go for toilet. I went to hospital then I conducted MRI for my anal. the results are:

" Features are suggestive of inter sphincteric grade 1 fistula arising from 1 o clock position on left side of anal canal with surrounding inflammatory changes. And extending inferiomedially between the internal and external sphincters into the subcutaneous tissues of the left buttock. No breach of the external anal sphincter. No abscess seen. "

I don't understand if this one is complicated or normal ?

I'm very afraid from having surgery. not from the surgery itself. but from the side effect especially if the operation affect my ability to control " fecal incontinence". it's rare ? or it's common ?
 
Fayez, I don't have any advice about the surgery, other than to say I really sympathise with you regarding the surgery. I don't really like the sound of surgery due to the risk of incontinence (should a fistula arise from the abscess). I wonder if this as already happened, not sure, just they way it feels right now, though I am no expert and will let the doctors decide.

From my understanding, they will not do any operation that can cause incontenance unless there is no other option. I have heard other say that when a fistula crossed the spicnter muscles and is complex, surgeons will often resort to setons instead, with the aim of encouraging healing this way, rather that cut the muscle and risk incontenance. I would speak to your doctor or surgeon about it all in depth before agreeing to any surgery so you feel reassured. Hope this helps.

Thanks Mellie, I will certainly mention this to any surgeon I come across when dealing with the abscess surgically.
 
Got my appointment today to see a colorectal surgeon. Was quite shocked how quick they sorted it out. Going to see him a week tomorrow at a private hospital. Perhaps now we can get to the bottom of things regarding this abscess (excuse the pun haha).

Andy
 
Got my appointment today to see a colorectal surgeon. Was quite shocked how quick they sorted it out. Going to see him a week tomorrow at a private hospital. Perhaps now we can get to the bottom of things regarding this abscess (excuse the pun haha).

Andy
Hoping the best, Andy.
 
I understand the frustration for sure.I have two setons and I have been uncomfortable with them for a few weeks now don't know whats going on.I had the sugery for them on April 13th sighs!!!
 
I came on here hoping for answers concerning my fistula and seton and I realize that I am not alone going through this But I read your stories and unfortunately it concerns me even further. Middle of June I will be going through my second seton surgery and then 6 weeks later my third. So many of you seem to be struggling with this issue for years. I just want this to be over and to not have this reaccuring problem... kinda scared...
 
I came on here hoping for answers concerning my fistula and seton and I realize that I am not alone going through this But I read your stories and unfortunately it concerns me even further. Middle of June I will be going through my second seton surgery and then 6 weeks later my third. So many of you seem to be struggling with this issue for years. I just want this to be over and to not have this reaccuring problem... kinda scared...
Sending support.
 
Got my appointment today to see a colorectal surgeon. Was quite shocked how quick they sorted it out. Going to see him a week tomorrow at a private hospital. Perhaps now we can get to the bottom of things regarding this abscess (excuse the pun haha).

Andy
How did your appointment go ? You should not have to suffer any longer.

My history : Anal Fistulectomy in 1992. Rectal Abscess surgery in 2002 and 2009. No fistulas or abscesses at this time. I have had diarrhea since 1997. I was diagnosed with UC in 2006. I had C-diff in 2015. Thanks for listening. Everyone have a good week. :Flower:
 
I heard a anal fistulectomy has a chance of you being incontinent if they cut in to the sphinxter muscle.My surgeon Is talking about a biolift or a flap advancement.I have two setons in place now and this will be my fourth surgery for fistulars.
 
Thanks for asking Ann. My consultant has confirmed I have a fistula. He could see and feel the external opening but could not locate the internal opening on examination. He has requested an MRI to see what course of action to take next, though he did say some form or surgery will be needed. I'm a bit fed up with it to be honest but there are worse things happening in the world I guess.

I'm trying to stay positive and focus on the good things in life. I've just been promoted at work (I'm a teaching assistant in a special school). I'm also working towards becoming a teacher in the next few years, which the school is supporting me through so I'm very lucky in other ways!

I really do send my support to everyone else that is going through this and other GI conditions. Whilst I haven't been diagnosed with Crohns I have found everyone here so supportive of my GI problems and everyone has been so welcoming. It really makes me realise I'm not alone so thanks to everyone for your support. I'm always here for you too

Andy :)
 
Hi Andy,
I so understand what your going through I am so sorry you have a fistular.I have a complex fistular and need to once again have surgery I have 2 setons now.Keep in touch.
 
Hi everyone, i was diagnosed with Crohn's when i was 20. Except for one relapse have been off meds (cleared by dr) for 10 yrs. Used to take all the meds including azathioprine, prednisone. In January i opted for a body check since its been quite some years. My doctor had me take a colonoscopy where they found fistulars. Now its been confirmed through mri scan that i have 3 fistulars connected to my ovary and small bowel.

Doctors have not been very helpful so far. I have been in and out of hospital since January. They only told me that the inflammation has gone up besides havng 3 fistulas but i don't have any pain whatsoever.

Now they prescribed me with 2 months of medical nutrition / liquids and budenofalk.

I am really scared about what is coming next. Is surgery inevitable and would they remove my ovary is what is on my mind every day. I am only 34 yrs old so am scared my life as it is over and it does not help that i am not able to eat which makes me easily emotional and agitated.

Came here to find support. Its great to have all of you here.

Veronique from Netherlands
 
Sorry to hear of your problems. Again, I'm not sure what the eventual outcome will be. All I can say is keep communication as open as possible with your doctors and make sure you have all the facts and choices before going ahead with any procedures or surgeries.

My consultant, who recently diagnosed my fistula, told me that he will give me all the information about my condition and them make his recommendations but it is my decision how to proceed. Knowing this at least makes you feel that you have some control.

Sending my support to you and we are hear if you need to talk.

Andy
 
Hi mellie,
My son is Being de akin with anal abscesses as well for the past 10 years, and even though we had the GI do a colonoscopy and ask to swap the abscesses they have not done it.
Did they tell you what kind of bacteria they discover you had and what antibiotics did you take.
After reading your post I'm going to look for a infectious disease specialist.
Lizette
My doctor also refused "that is just not done". I wasn't insistent enough but now i will insist upon my next visit. I will also seek out an infectious disease doctor. Thanks guys.
 

dave13

Forum Monitor
Location
Maine
Hi everyone, i was diagnosed with Crohn's when i was 20. Except for one relapse have been off meds (cleared by dr) for 10 yrs. Used to take all the meds including azathioprine, prednisone. In January i opted for a body check since its been quite some years. My doctor had me take a colonoscopy where they found fistulars. Now its been confirmed through mri scan that i have 3 fistulars connected to my ovary and small bowel.

Doctors have not been very helpful so far. I have been in and out of hospital since January. They only told me that the inflammation has gone up besides havng 3 fistulas but i don't have any pain whatsoever.

Now they prescribed me with 2 months of medical nutrition / liquids and budenofalk.

I am really scared about what is coming next. Is surgery inevitable and would they remove my ovary is what is on my mind every day. I am only 34 yrs old so am scared my life as it is over and it does not help that i am not able to eat which makes me easily emotional and agitated.

Came here to find support. Its great to have all of you here.

Veronique from Netherlands
In my opinion,you need to have the fistulas attended to.The potential damage they can do the longer they are not dealt with has to be considered.I agree with Starnett,communication is important.If you have three confirmed fistulas,your gastroenterologist and you need to get together and form a plan.Our health care systems are so different with forum members,depending on where we live.I had a fistulotomy/draining seton placement and I share your concern about surgery.We are different in how we are affected but I stress fistulas need to be attended to so they do not progress.As far as meds for the fistulas I have infliximab/remicade infusions.In my case,surgery really helped.My fistulas are around my rectum,so it is a different situation than you.I send you support and keep us posted.
 
I also think fistulas need to be attended to. 3 confirmed fistulas is a lot at one time and they can cause major damage if not attended to.
 
I was just wondering if any one knew the answer to this question.Why do they put setons in you then you have to wait then you have another surgery? Why can't they just do the surgery with out the setons.Thank you For Your Ears:))
 
Veronique : I agree with staying informed and taking action. I have learned a lot here on this forum than anywhere else. I had an anal fistulectomy in 1992. I knew nothing at that time. Little by little over the years I have learned more. An anal fistulectomy, an upper GI, a lower GI, a Flexible Sigmoidoscopy, a rectal abscess and yellow-watery diarrhea I finally had a diagnosis of UC in 2006.
I agree, do not wait, become informed and be proactive.
 
I was just wondering if any one knew the answer to this question.Why do they put setons in you then you have to wait then you have another surgery? Why can't they just do the surgery with out the setons.Thank you For Your Ears:))
My understanding is they can;t do surgery when there is an active infection going on. The seton keeps the fistula tract open so the infection can drain and heal, then they perform the surgery. Hope this helps.
 
Hi Melee,
Thank you for the answer maybe they think every one has an infection with the fistulars and they put the seton in first to make sure the infection is not there and then they do surgery.This will be my third surgery this year for the same two fistulas I pray they will be fixed once and for all.Have a great day...Christina
 
I am grateful to have had three months without my fistulas....having the relief from a dose of high strength antibiotics. I got cocky and actually questioned if I even had Crohn's! Funny how Crohn's likes to knock you back down to earth when you get cocky :). Yesterday I met with my GI and was discussing how wonderful I felt, we discussed rye trickiness of this disease and scheduled a follow up for a year from now and a continuation of Humira. This morning I woke up, got in the shower and (sorry for the graphic) felt the familiar knots of pain as I was cleaning myself. I literally stood in the shower and cried. They are not opened yet and that makes them the most painful and now I'm in bed on my stomach for relief. They came back literally the day after I had my appointment with my GI!!! Like, "HA!" We'll show you! I'm also having more typical Crohn's symptoms today...running to the bathroom so I've been afraid to eat. Blech!
 
Hi all,

Having a frustrating weekend with my fistula. I mentioned on another post that my consultant suspects I may have Crohn's and I'm currently awaiting a colonoscopy and upper GI series to see if this is the case. I'm also still awaiting MRI results for the fistula. I've had lots of drainage and bleeding this weekend though and some pain too. Is it normal to see blood and occasional clotted looking blood with a fistula?

Andy
 
Hi Starnett,
Sorry your having a frustrating weekend with the fistulars they can be a real pain.I get blood and a lot of discharge every day I have the 2 setons on the two fistulars so no infections.I hope they find out whats wrong with you they did a cat scam,stool tests and blood work on me no answer good luck.
 
Thanks for your replies.

I'm new to this stuff so I was getting a bit worried when I was seeing more blood.

I really hope I get some answers too Christina. I'm just so fed up with it all and I'm feeling pretty worn out at the minute. Not much energy for anything but going to work. Things could be worse so I try not to dwell too much on it.

Sorry to hear you didn't get any answers from your tests. What did they suggest as they found nothing from those tests. I'm not sure if I'm more worried about the finding something, or not finding something.
 
Hi Starnett,
I brought my blood results in to my colorectal surgeon I never heard back from the GI office they were not good not good at all.I since just keep on living as best as I can and will have a third surgery in September hopefully to get rid of the fistulars forever.From what I have heard its not always easy to find Crohn's I think they do a biopsy when you have your colonoscopy and look for things like inflammation.Hugss Christina
 
Well my second surgery turned into a Fistulotomy, instead of reducing the size of the seton. Let me say it is no walk in the park... I now have a crater 2 inches long an inch wide and almost an inch deep. The last week has been hell... has anyone else had a fistulotomy? No one can give me answer when I ask how long it takes to heal. The surgeon and nurses all say it differs from one person to another. Today was the first day that I didn't take any morphine until suppertime... So I guess it's getting better. Any input would help.
 
Hi Bump,
I am sorry your having a lot of pain.I am sure it does vary person to person for healing.I have to have a bip list or a advance flap surgery in September keep in touch let us know how you are doing....Christina
 
Bumprump: I had an anal fistulectomy in 1992. It was outpatient surgery. After I got home I decided to look at the surgery area with a mirror and I was horrified by what I saw. I think looking at it was a bad idea. I wish I could erase that picture from my mind.

I did the sitz baths daily and follow-ups with my doctor. I do not recall being prescribed pain medication. I cannot remember how many days I missed from my job or how long before it completely healed up. I wish you a speedy recovery and hope you feel better soon.
 

MJD

Location
Ohio
Ok, new to this group although I've had Crohn's for 25 yrs and a permanent Ileostomy for 9 yrs. Most of the time, I'm ok. But starting in March, I developed sharp abdominal pains and fevers, but no nausea/vomiting/ diarrhea. Threw me for a loop since that's how Crohn's usually appears. Saw my pcp, an urgent care dr, and my gastro over the next couple mths until on May 20, a CT scan showed several abdominal abscesses. Hospitalized with IV antibiotics then dc'd home on oral ones. Lasted a week, pain came back, repeat CT done showed more abscesses & a "contained perforated small intestine". Back in hospital for 7 days on different antibiotics, sent home on PICC line with home antibiotic infusions every 6 hrs. My question (finally, I know!)--it's been 11 days since I've been home, and I only have 5 days left of my IV antibiotics. I still feel drained, tender, fatigued, lethargic...when am I supposed to feel better? I thought I had a decent understanding of my Crohn's & this has really shaken me up.
 
Unfortunately with Abscesses they differ in each individual. Some people finish the antibiotics, they heal and they are fine. Others like myself got no relief from antibiotics. I had surgery to drain the abscess (they had to cut through my sphincter muscle so was risk of incontinence, but luckily I healed fine that way). However the abscess filled back up and I developed a fistula from the abscess out through my skin. And have been dealing with that now for 18 months. Sorry there is no definite answer, but hope everything works out for you and you feel relief soon. My abscess kept flaring up and draining through the fistula. I am now waiting on surgery to have a seton placed. I already had an advanced flap repair which didn't fix it. And have done 3 courses of Cipro and Flagyl which also did nothing.
 
Sorry to hear of your problems with the abscesses MJD. It's sound like you've had a horrid time recently. I too can't say how long you will take to feel better. All I can say is you are not alone and I am sending my support.

I've not had as many problems as you so far but I have a recurring fistula / abscess which is a huge pain to deal with, both physically and mentally. It's also starting to make me feel quite drained most days. Having an active job in a school helps to keep my focused and takes my mind off things but that in itself can be hard because of my low energy.

Hope you start to feel better soon. Are you seeing your specialist before your antibiotics run out? Perhaps they may extend the course if they don't think you've improved enough on the current course?

Andy
 

dave13

Forum Monitor
Location
Maine
I am approaching two years with draining setons. I do feel the fistulotomy was/is worth it,in my opinion. I went misdiagnosed for years and suffered the pain of abscesses and the damage to my rectum. In my case,surgery stopped the damage being done. You have to be careful the fistula does not 'burrow' elsewhere.
 

MJD

Location
Ohio
Thanks so much for sharing your experiences. I am on round two of IV antibiotics, still off work, and am having a repeat CT tomorrow to get an update on what's going on inside. I still feel tired A LOT, but the pain is better. If there is no improvement, then surgery will be an option. Hope you all are doing ok...hang in there! Again, thanks for listening and sharing. Each Crohn's case is different, but at least in sharing, we aren't so alone!
 
Well I've received my MRI report back and it says it's a simple fistula. Got to have a follow up with my consultant when I've finished having tests to rule Crohns in or out then I will discuss surgical options.

On another note, I had my colonoscopy today too. The endoscopist told me right away that everything was clear, even several inches into the small bowel. He said the bowel looks very healthy. I'm due to have a small bowel barium follow through with X-rays next month and I'm just wondering if this is necessary? What chance is there that this could be Crohns now. Can anyone enlighten me as to what symptoms you may expect with Crohns in the small bowel?

The doctors today suggested my issues could be triggered by food, despite cutting out gluten and having a period of relief (about 6months).

Not sure what to do now really. My GI consultant said if all the test came back clear he would refer me to a dietician to look at food related issues.

Andy
 
Well I've received my MRI report back and it says it's a simple fistula. Got to have a follow up with my consultant when I've finished having tests to rule Crohns in or out then I will discuss surgical options.

On another note, I had my colonoscopy today too. The endoscopist told me right away that everything was clear, even several inches into the small bowel. He said the bowel looks very healthy. I'm due to have a small bowel barium follow through with X-rays next month and I'm just wondering if this is necessary? What chance is there that this could be Crohns now. Can anyone enlighten me as to what symptoms you may expect with Crohns in the small bowel?

The doctors today suggested my issues could be triggered by food, despite cutting out gluten and having a period of relief (about 6months).

Not sure what to do now really. My GI consultant said if all the test came back clear he would refer me to a dietician to look at food related issues.

Andy
Most of my Crohns is in the small intestine and I can go to the bathroom a lot.
 
Last July I experienced some excrutiating pain inside my anus. I'd had hemmorhoids before, but this was a 100 times more painful. After googling around, I figured out it was an abscess. Internal hemmorrhoids don't cause such pain as there are no pain receptors in that area of the anus.
I had to go to the ER three times until they listened to me when I said it wasn't hemmorrhoids, that it had to be an abscess.
Mine was located internally, between the rectum and my vagina, directly under the perineum.
Finally I was admitted for surgery where they opened and drained the abscess. They left it open (internally) to clean itself out and heal (no idea how they thought it would ever get CLEAN in that spot, being constantly bombarded with feces).
In December, it still hadn't healed and was still oozing puss, so they sent me for an colonoscopy to check if I had Crohn's. They saw no signs.

Finally in March this year, my surgeon decided it was time to close it up. I went in for surgery and got a week's worth of anti biotics.
Almost immediately after my AB course finished, I experienced excrutiating pain down there, and it spread to my right buttock. I went to the hospital on Good Friday, and was sent home with more AB and painkillers.
The next day I was getting even worse and went to the ER. While I was lying in the ER waiting for my turn at a CT, I needed to pass some gas, but instead I got this piercing stinging pain like it was trying to go into my buttock instead of the usual way. The CT showed my buttock had a pool of puss and AIR inside it, guess it DID go there.
I was sent in for another surgery. A fistula had formed. They put in a seton, kept me overnight with AB via IV and then discharged me on Easter Day.
I went back 2 days later, I was still in a LOT of pain. I was examined under GA, but nothing was done. They were going to discharge me again, but I put my foot down and was allowed to stay one night, getting morphine injections regularly - I must say it was the freakiest night I ever experienced (half asleep hallucinations etc). I was then discharged with a week long course of ABs.
9 days later I had a checkup with my surgeon. She felt everything was going good and gave me more ABs. 12 days later I got worse again, this time further into my right buttock. I went in and my surgeon cut a hole in my buttock under local anaesthesia. A lot came out. A LOT.
She ordered an MRI. I live in a small country and there is a 3 week waiting list, unless it's life or death.
2 weeks later I feel pain on the left side. I go in, but the doc that saw me didn't want to do anything as I had an appointment the next day with my surgeon. He gave me ABs to last 'till the next day.
I went to see my surgeon for my appointment and she sees it's spread to the left side and forward on each side of my vagina. She doesn't want to do anything until she has a clear image of the entire fistula system. This was on a Wednesday. I had my MRI appointment a week later, but she decided to make a call and have it moved up for Friday.
On Wednesday the next week I was back for surgery. She added another seton, created an opening on my left labia majora and inserted a drain, and also inserted a drain in the incision on my right buttock. I'm discharged the same day, as usual.
2 days later I go in again, the drain next to my vagina caused me a lot of pain. Turned out it fell out almost immediately after the surgery and was hanging by, and pulling on, the suture keeping it in place. Surgeon removed it. 5 days later she also removes the drain from the buttock.
Now, for 2 months I'd been taking Tramadol hcl for pain. I lowered my dose a bit, and didn't know it at the time, but I was experiencing some withdrawal symptoms. I felt like I was experiencing arrhythmyia, shaking etc, so I went to the cardiac ER. They couldn't find anything so they sent me home.
6 days later I go back for a checkup with my surgeon. She schedules another surgery. She feels my fistula isn't draining enough.
On May 26, I come in for the surgery. 7 hours later I wake up in the ICU, intubated on a ventilator.
They'd had some problems getting me properly anaesthetized and needed to give me more Propofol than usual. I went into a bronchospasm and needed more air pressure and oxygen to keep me breathing. They did the sugery, then kept me under for 5 more hours so my body could recuperate. I was kept in the ICU for 24 hours for observation, and a second night in a general ward.
I now had 3 setons and an open, draining wound on my buttock.
I have ups and downs. I take paracetamol + codein for pain and all openings are draining quite a bit. No further surgery has been scheduled yet, probably won't happen for another month or two.
One thing I've noticed is I seem to be passing a lot of gas, and I mean A LOT. About every 5-10 minutes. Most of the time it goes either through the opening in my buttock or along the seton on my labia.
I'm getting tired and frusterated. I work in an office and can't sit all day long while I'm like this. It's really affecting my mental health, and I was severely depressed before this whole thing, needing the maximum allowed dose of Prozac.
 
I am wondering if they have to drain it again if maybe they should keep you in the hospital longer and give you antibiotics by IV? I am not a doctor so ask your doctor.
 
I am wondering if they have to drain it again if maybe they should keep you in the hospital longer and give you antibiotics by IV? I am not a doctor so ask your doctor.
I've asked repeatedly. The problem is the health care system in my country. Lack of beds, staff and funds mean you really don't get to lie in the hospital unless you're old and unable to care for yourself or have a life threatening health issue. The hospitals are full of old people that are waiting for a spot in a nursing home and have nowhere else to go.
My doc says ABs really won't help anything as the bloodstream can't reach the infected area — which I find weird 'cause there is plenty of blood — and that it only helps to prevent the infection getting worse, which it isn't at the moment.
Throughout this whole ordeal, over 6 operations with repeated complications, I've always been sent home the same day, save the broncospasm incident. Is this normal practice everywhere else? I've seriously considered seeking medical attention outside the country!
 
Over 20 years ago, I had an abscess that bled for three months. I went to the hospital and had it drained. They sent me home the next day even though my wife begged them not to. A week and a half later, the abscess was acting up again. This time, they kept me for a week and used intravenous antibiotics because the strength of the medicine they gave me would have been too strong by mouth. I hope they can get you under control soon.
 
I've asked repeatedly. The problem is the health care system in my country. Lack of beds, staff and funds mean you really don't get to lie in the hospital unless you're old and unable to care for yourself or have a life threatening health issue. The hospitals are full of old people that are waiting for a spot in a nursing home and have nowhere else to go.
My doc says ABs really won't help anything as the bloodstream can't reach the infected area — which I find weird 'cause there is plenty of blood — and that it only helps to prevent the infection getting worse, which it isn't at the moment.
Throughout this whole ordeal, over 6 operations with repeated complications, I've always been sent home the same day, save the broncospasm incident. Is this normal practice everywhere else? I've seriously considered seeking medical attention outside the country!
I am so sorry you are going through this. I too had an abscess, which led to a recto-vaginal fistula, lots of anti-biotics, 3 surgeries and am now waiting on a another surgery as a second fistula has popped up. I live in Canada where healthcare is free, but free doesn't equal great...I had in hospital stays for 2-3 days after every surgery. However, the wait times here are ridiculous, this started for me in Dec 2014. Here you go for a test, wait 3-6 months for results of the test, then wait another 6 months or more for the surgery you need. So my last test was in May, I am scheduled to get the results in September. I signed waivers and paperwork for the surgery I need in March, and am still waiting for the surgery date!!
 
I am so sorry you are going through this. I too had an abscess, which led to a recto-vaginal fistula, lots of anti-biotics, 3 surgeries and am now waiting on a another surgery as a second fistula has popped up. I live in Canada where healthcare is free, but free doesn't equal great...I had in hospital stays for 2-3 days after every surgery. However, the wait times here are ridiculous, this started for me in Dec 2014. Here you go for a test, wait 3-6 months for results of the test, then wait another 6 months or more for the surgery you need. So my last test was in May, I am scheduled to get the results in September. I signed waivers and paperwork for the surgery I need in March, and am still waiting for the surgery date!!
I am sorry
 
I'm bleeding a lot this weekend, mostly through the wound on my buttock (it's deep, over 2 inhes straight in, then a long fistula tunnel to my anus).
I have a large absorbant pad dressing on the wound that I need to replace once a day. Thankfully my fiance is willing to help. Just now I stained our couch with blood as I was bleeding so much, the pad couldn't keep up.
 
I'm bleeding a lot this weekend, mostly through the wound on my buttock (it's deep, over 2 inhes straight in, then a long fistula tunnel to my anus).
I have a large absorbant pad dressing on the wound that I need to replace once a day. Thankfully my fiance is willing to help. Just now I stained our couch with blood as I was bleeding so much, the pad couldn't keep up.
Contact your doctor tomorrow and try to get in to see him as soon as possible.
 
I had lift surgey done 1 day ago and i am wondering why gas is still passing through the external opening. External opening is left open for the rubbish to drain. Crs told me external opening will gradually heal but i will expect drainage for few days or so.
 
I had lift surgey done 1 day ago and i am wondering why gas is still passing through the external opening. External opening is left open for the rubbish to drain. Crs told me external opening will gradually heal but i will expect drainage for few days or so.
I had the advanced flap repair done in Dec 2015to repair an recto-vaginal fistula. The fistula opening is still there. It leaked fecal matter and fluids for a couple weeks following surgery. Now 7 months later it is still passing gas/air but I am thankful it stopped the infection and the draining fecal matter. I am due to have surgery for a second fistula, hopefully sometime soon. Best of luck!!
 
I had the advanced flap repair done in Dec 2015to repair an recto-vaginal fistula. The fistula opening is still there. It leaked fecal matter and fluids for a couple weeks following surgery. Now 7 months later it is still passing gas/air but I am thankful it stopped the infection and the draining fecal matter. I am due to have surgery for a second fistula, hopefully sometime soon. Best of luck!!
I wish you the best
 

dave13

Forum Monitor
Location
Maine
O.k.. I hope this brings a smile. My colorectal specialist left and I had to find a new one(not the smile part).I was fortunate to find someone,granted he is an hour away.His name is Thomas Brady,get it? Tom Brady. :ylol:
 
Hi everyone,

Finally scheduled for my mucosal advancement flap on 8/12. CRS says about a week of pretty severe pain. I read on here at one point that a week is pretty optimistic. Anyone have a rough time line on recovery. I understand it will be different for everyone, but your experiences will be greatly appreciated.
 
Hi everyone,

Finally scheduled for my mucosal advancement flap on 8/12. CRS says about a week of pretty severe pain. I read on here at one point that a week is pretty optimistic. Anyone have a rough time line on recovery. I understand it will be different for everyone, but your experiences will be greatly appreciated.
I had the advanced flap repair done for my recto-vaginal fistula and a hemorroidectomy was done at the same time (hemorrhoid was in the way when they got in there to do the flap repair). I was on pain meds for over 4 weeks and was down and out for almost 6 weeks, but doc said that was probably due more so to the hemorroidectomy, which is a very painful surgery, then the flap repair. Wish you the best of luck!
 
Hi GABoy,
I too am on the list to have the advancement flap surgery! Everyone is different but I have a friend that had the surgery and was in alot of pain after and on meds for 4 weeks and just over 6 weeks recovery time. Good luck for your surgery!
 
Kelly1,

What is the wait time like in the UK? I waited until 8/12 rather than having it in July because of travel, etc. I guess I could've had it right after I was cleared by GI.
 
GABoy!

They say procedures to be done within 18weeks here. My surgeon has gone part time so im guessing I may have to wait a bit longer which im ok with.
How many surgeries have you had for your fistula?
 
GABoy!



They say procedures to be done within 18weeks here. My surgeon has gone part time so im guessing I may have to wait a bit longer which im ok with.

How many surgeries have you had for your fistula?

I guess that depends what you consider surgery! I've had three different seton placement surgeries where I was under anesthesia. If you consider incision and drainage of abscesses as surgery, I've had that done four times. Nothing but a local on those, so not sure what to consider it!
 
Hello everybody. I just wanted to say that I had surgery on my fistula on January 21st and it hasnt returned yet. :D
If you don mind me asking what type of surgery did they do? Both my specialist Lutheran hospital in ft Wayne and Cleveland clinic said that you can't do surgery on fistulas. Thanks!!
 
If you don mind me asking what type of surgery did they do? Both my specialist Lutheran hospital in ft Wayne and Cleveland clinic said that you can't do surgery on fistulas. Thanks!!
There are actually a few different surgeries they can do depending on the type of fistula and location. They can do a fistulotomy, a plug or glue injection, or an advanced flap repair (which I had to fix my recto-vaginal fistula). Also, recently developed was the LIFT procedure. The following link provides some good info on available treatments.

https://www.fascrs.org/patients/disease-condition/abscess-and-fistula-expanded-information
 
Hi guys... Positive thoughts and prayers, if you've got some good history with the man upstairs... Advancement Flap tomorrow morning, 9 am at Mt. Sinai in NYC... I'll post on how I'm feeling once I'm up to it. Not nervous yet. I'm just ready for it to be over with. Thanks everyone.
 
Well, I'm told it went well. Didn't have a ton of pain coming home because of iv and oral pain meds. Pain has really started in the past hour or so. It is bearable, but I am keeping medicine close by. Thank you all for the kind thoughts and I'll continue to fill y'all in. I just want to make sure there is a contemporaneous record for anyone contemplating the procedure on a later date.
 
Well, I'm told it went well. Didn't have a ton of pain coming home because of iv and oral pain meds. Pain has really started in the past hour or so. It is bearable, but I am keeping medicine close by. Thank you all for the kind thoughts and I'll continue to fill y'all in. I just want to make sure there is a contemporaneous record for anyone contemplating the procedure on a later date.
Hoping the best.
 
Last night was tough. I was having difficulty evacuating my bladder. The pain was pretty bad.

I woke up this morning and decided to shower. I removed the packing and that has helped me evacuate my bladder. I feel okay right now. Pain is a 4-5, and I'm due for meds in about an hour.

Thanks again everyone.
 
Last night was tough. I was having difficulty evacuating my bladder. The pain was pretty bad.

I woke up this morning and decided to shower. I removed the packing and that has helped me evacuate my bladder. I feel okay right now. Pain is a 4-5, and I'm due for meds in about an hour.

Thanks again everyone.
After my flap repair they kept me in the hospital for 3 days until I could comfortably use the bathroom, and the packing was removed by the nurse before I went home. However, once I got home, I started having difficulty peeing. The nurse said it was probably due to swelling in the area. I soaked in the bathtub a lot, found it helped me relax and kept things clean. Also, as gross as it sounds, based on a recommendation from the nurse, I found it easier to pee while lying in the tub of warm water. Wish you the best of luck, and hope the surgery was successful for you.
 
After my flap repair they kept me in the hospital for 3 days until I could comfortably use the bathroom, and the packing was removed by the nurse before I went home. However, once I got home, I started having difficulty peeing. The nurse said it was probably due to swelling in the area. I soaked in the bathtub a lot, found it helped me relax and kept things clean. Also, as gross as it sounds, based on a recommendation from the nurse, I found it easier to pee while lying in the tub of warm water. Wish you the best of luck, and hope the surgery was successful for you.


They did mine in a surgery center and I was home within 4 hours of the surgery. I think the recto-vaginal procedure is more complex. Removing the packing was okay, I was just shocked as to how much there was. I do have a complex fistula so it is way up there. Going to bathroom is getting easier and easier. I've also been doing sitz baths which help a lot.
 
Yesterday was tough. I feel like 2nd and 3rd day post surgery have been awful. I woke up this morning in pain. I still have not defecated. I'm tired and frustrated. I want to be back at work, but there is no way I could sit. I'm trying to wean off of pain meds, but every time I try to stretch an extra hour out of a dose, I'm just in more and more pain. This sucks.
 
Yesterday was tough. I feel like 2nd and 3rd day post surgery have been awful. I woke up this morning in pain. I still have not defecated. I'm tired and frustrated. I want to be back at work, but there is no way I could sit. I'm trying to wean off of pain meds, but every time I try to stretch an extra hour out of a dose, I'm just in more and more pain. This sucks.
I did the same thing trying to wean myself off the pain meds too early, unfortunately I just ended up suffering. I landed back in the ER as the pain became unbearable (as a point of reference - I have a huge pain threshold, went through 40 hours of labour without any pain meds!). I would maintain the meds for at least the first 7-10 days, before attempting to wean off them. I learned my lesson the hard way, doctor told me I was too stubborn and to take the pain meds, or I would keep suffering unnecessarily. Best of luck. i know the pain sucks, but try to think of the final outcome, no fistula!
 
Going in for my 7th operation this Friday. They're going to add the FOURTH seton. This one will go from my anus all the way to the middle of my buttock where I have a DEEP (4-5in straight in) fistula.
Been getting worse. Puss just keeps coming, smelling worse every day. So bad now that my fiance can no longer take it while changing my dressings, so I have to do it myself with a mirror and some flexing - thank you childhood gymnastics!
It's been 13 months since this whole thing started, and the end is nowhere in sight.
 
Looks like no one has any positive news lately. I wish I did. I finally defecated on Tuesday. The pain has increased since that time. My doctor called in more pain meds yesterday. I'm nowhere close to getting back to work. I'm trying to keep a positive attitude, but it is so hard to do right now.

Dudah84, keep your head up. I was there not that long ago. While I'm complaining right now, the surgery I just had should close my fistula. It's what keeps me going. I'm thinking about no more discharge; no more open wound. Good luck to you.
 
Looks like no one has any positive news lately. I wish I did. I finally defecated on Tuesday. The pain has increased since that time. My doctor called in more pain meds yesterday. I'm nowhere close to getting back to work. I'm trying to keep a positive attitude, but it is so hard to do right now.

Dudah84, keep your head up. I was there not that long ago. While I'm complaining right now, the surgery I just had should close my fistula. It's what keeps me going. I'm thinking about no more discharge; no more open wound. Good luck to you.
Hang in there
 
As supportive as this thread is it is also full of horror. There seem to be absolutely no good results for anyone. :( Everyone, including myself, seem to take one step forward and two steps back.

This has got to be one of the most dangerous extra-intestinal manifestations of the disease. I've had Crohns for 17 years. Fistulas are definitely THE thing that affects my quality of life most.
 
How many ladies have had a gracilis muscle tranfer surgery for rectovaginal fistula? I just had mine in June this yr, an im having so many complications. I'm on my 11 surgery not sure if this one is successful yet but all the others weren't. I also have a ileostomy with an extreme para hernia. Just want to know if anyone that had the gracilis muscle surgery bled analy for 2 mos after everyday an still have some much pain in the leg where the gracilis was removed from? My knee is so bad also.
 
As supportive as this thread is it is also full of horror. There seem to be absolutely no good results for anyone. :( Everyone, including myself, seem to take one step forward and two steps back.

This has got to be one of the most dangerous extra-intestinal manifestations of the disease. I've had Crohns for 17 years. Fistulas are definitely THE thing that affects my quality of life most.
Not sure how to reply to these I just wrote my first question a hr ago about the gracilis surgery but I agree with u after 11 surgeries it one step forward an 2 steps back. An most definitely the rectovaginal fistula an ileostomy are the biggest things that effect my quality of life. It's so hard to deal with an I feel so alone, I know I'm not because I found this group but it's not like I have anyone close to talk to about it that understand. Especially because I don't have Crohn's or IBS.
.
 
As supportive as this thread is it is also full of horror. There seem to be absolutely no good results for anyone. :( Everyone, including myself, seem to take one step forward and two steps back.

This has got to be one of the most dangerous extra-intestinal manifestations of the disease. I've had Crohns for 17 years. Fistulas are definitely THE thing that affects my quality of life most.
My anal fistula got cured, but I had to go to India. If you can afford to travel and stay in India for the duration of the treatment, the treatment I underwent is one of the possibilities.

https://fistulapatient2patient.wordpress.com/
 
I got good news yesterday, I went to see my colorectal Dr. And my plastic surgeon and it's been 2 mo. Since my gracilis muscle walking flap surgery for my rectovaginal fistula, my 11th surgery mind you, an we think it is heald. Not 100% sure yet but nothing is going threw. They are gonna come up with an under anesthesia exam appointment in the next couple mos. My Drs. Said if it isn't healed they will move some of the remaining muscle around to make another flap. But if it is healed they will go ahead an do the ileostomy reversal with the hernia repair. I am so happy to know I'm getting closer to getting my life back an will get to work an finish school again. This have been a long road for me. An I am greatful to still be alive an this has humbled me. I am a much more understanding an sympathetic person because of this. I will always support this group an people with these issues enemy when this is all over because it's always gonna be part of who I am. Staying positive.......
 
I got good news yesterday, I went to see my colorectal Dr. And my plastic surgeon and it's been 2 mo. Since my gracilis muscle walking flap surgery for my rectovaginal fistula, my 11th surgery mind you, an we think it is heald. Not 100% sure yet but nothing is going threw. They are gonna come up with an under anesthesia exam appointment in the next couple mos. My Drs. Said if it isn't healed they will move some of the remaining muscle around to make another flap. But if it is healed they will go ahead an do the ileostomy reversal with the hernia repair. I am so happy to know I'm getting closer to getting my life back an will get to work an finish school again. This have been a long road for me. An I am greatful to still be alive an this has humbled me. I am a much more understanding an sympathetic person because of this. I will always support this group an people with these issues enemy when this is all over because it's always gonna be part of who I am. Staying positive.......
Wishing you the best as it looks like you are coming towards the end of one journey.
 
I got good news yesterday, I went to see my colorectal Dr. And my plastic surgeon and it's been 2 mo. Since my gracilis muscle walking flap surgery for my rectovaginal fistula, my 11th surgery mind you, an we think it is heald. Not 100% sure yet but nothing is going threw. They are gonna come up with an under anesthesia exam appointment in the next couple mos. My Drs. Said if it isn't healed they will move some of the remaining muscle around to make another flap. But if it is healed they will go ahead an do the ileostomy reversal with the hernia repair. I am so happy to know I'm getting closer to getting my life back an will get to work an finish school again. This have been a long road for me. An I am greatful to still be alive an this has humbled me. I am a much more understanding an sympathetic person because of this. I will always support this group an people with these issues enemy when this is all over because it's always gonna be part of who I am. Staying positive.......
Glad to hear things are moving along for you! Stay positive and take it day by day (as we all have come accustomed to).

I'm having gracilis surgery for an anal fistula myself in a little over two weeks. If all goes well, my CRS thinks we could do the ileostomy reversal around 8 weeks after. They're giving me 70-80% odds of having success and I'm keeping my eyes on the prize of a much better 2017!
 
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