Fistulas, Fissures and Abscesses Support Group

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I had a little sore earlier in the day. Sometimes, I can't empty myself. Recently, I have had incontinence after going without it for ages
 
I had a fistula that was discovered by flouroscopy. The barium passed through me in record time... 15 minutes. No other exam found the fistula. With the Flouroscopy they give you the barium to drink and then, every 15 minutes they check to see how far it has passed in your system. This process should take several hours. Not mine! The fistula connect one part of the small bowel to another part of the bowel, so I did not notice any symptoms besides "D".
 
ronroush7 said:
I had a little sore earlier in the day. Sometimes, I can't empty myself. Recently, I have had incontinence after going without it for ages
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Are you concerned about a peri-anal fistula or somewhere else? I really can't offer anything about other types.
 
At first, I thought it might be an abscess. Now, I am wondering if it could have been a peri- anal fistula. I have a history of fistulas.
 
Abscess has been one of the worst things I've had to deal with. Yeah, the fistula is painful, and annoying, but an abscess is so much worse. Also, having them drained without being under is extremely painful even when they use a local.
 
14 days without the setons.... aaaaand I'm starting to abscess again. Yay. My GI warned me that this could happen, apparently it is common that the Remi makes the fistula track heal faster at the exit, which leads to another abscess. Called my CRS, who scheduled me for next week, and told me to call her again to come in as emergency this weekend if need be, as she is on call (phew).

Good, that means I won't have to deal with my local hospital this time, which means no local anaestesia - or even worse, the "let's wait and see"-approach which inevitably leads to the abscess bursting on its own. It does mean I have a 4 hour train ride ahead of me though, but I'd rather do that than deal with the insecure doctors here any day.

With this mess of a body, I am so thankful to have the doctors I have - both my GI and my CRS have done a lot of research on fistulas, so combined, I'm sure they can figure me out. :)

On the bright side - I am in remission!
 
Diver jude said:
Hello people, I have crohns and a recto vaginal fistula with a seton stitch in place, I have an ilieostomy . Today I have experienced complete urinary incontinence ? For all of the day , I have no pain or feeling I need to go it just happens , I am scared it may be a bladder fistula or could it be something else , it is embarrassing and extremely worrying as I have had no symptoms like this before , do I need to call a doctor , please help if you have any ideas or have experienced similar :sign0085:
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Sorry, Ijust saw your post .
How did you make out with the doctor?
 
Devera said:
14 days without the setons.... aaaaand I'm starting to abscess again. Yay. My GI warned me that this could happen, apparently it is common that the Remi makes the fistula track heal faster at the exit, which leads to another abscess. Called my CRS, who scheduled me for next week, and told me to call her again to come in as emergency this weekend if need be, as she is on call (phew).

Good, that means I won't have to deal with my local hospital this time, which means no local anaestesia - or even worse, the "let's wait and see"-approach which inevitably leads to the abscess bursting on its own. It does mean I have a 4 hour train ride ahead of me though, but I'd rather do that than deal with the insecure doctors here any day.

With this mess of a body, I am so thankful to have the doctors I have - both my GI and my CRS have done a lot of research on fistulas, so combined, I'm sure they can figure me out. :)

On the bright side - I am in remission!
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Wishing and praying the best for you.
 
Devera said:
14 days without the setons.... aaaaand I'm starting to abscess again. Yay. My GI warned me that this could happen, apparently it is common that the Remi makes the fistula track heal faster at the exit, which leads to another abscess. Called my CRS, who scheduled me for next week, and told me to call her again to come in as emergency this weekend if need be, as she is on call (phew).



Good, that means I won't have to deal with my local hospital this time, which means no local anaestesia - or even worse, the "let's wait and see"-approach which inevitably leads to the abscess bursting on its own. It does mean I have a 4 hour train ride ahead of me though, but I'd rather do that than deal with the insecure doctors here any day.



With this mess of a body, I am so thankful to have the doctors I have - both my GI and my CRS have done a lot of research on fistulas, so combined, I'm sure they can figure me out. :)



On the bright side - I am in remission!
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Can't imagine a 4 hour train ride. I hope it all works out for you. Thoughts and prayers are with you.
 
Actually, sitting in a car is way worse than the train. At least in the train, I can sit slightly sideways, and it is a lot smoother.
 
Devera said:
Good news - finally! Had a follow-up with my CRS today after getting the three loading doses of Remi. She was very positive. The surrounding tissue had now normalized, my fistulas seems to be healing, and I had my setons removed. Fingers crossed I won't abscess again without them!
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How long did you have your Setons in? I posted in October when I found out I would be having the procedure. My seton surgery is scheduled for Friday and the last two weeks have been very painful. I have a large hard knot next to the anus. It is very tender. I have not had a doctor look at it since my surgery date is so near, but it is concerning to me. Anyone have this before their surgery?
 
hingrum said:
How long did you have your Setons in? I posted in October when I found out I would be having the procedure. My seton surgery is scheduled for Friday and the last two weeks have been very painful. I have a large hard knot next to the anus. It is very tender. I have not had a doctor look at it since my surgery date is so near, but it is concerning to me. Anyone have this before their surgery?
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I had mine since March. We decided then to keep them in until after I had my colonoscopy done to check for Crohns, and then leave them during the start of the remicade treatment. Got them out 2 weeks ago, went in again on saturday as an emergency since I started abscessing again. Woke up to a very pleased surgeon who told me that in those two weeks, my fistulas have healed so much she couldn't get a seton (or even one of those horrible metal poking things) through them. There are no longer an opening on the inside. I now have a seton just through the abscess site, from skin to skin, not through the anus as before. She thinks that this current abscess was caused by some residue that were trapped in there as the tract healed up. My GI wants me on a 6 week schedule on the Remi for now, till I have completely healed. I'm happy to obey, haha!

Good luck with your procedure, Hingrum! A hard and tender knot could very well be an abscess, so I'm sure they will assess that during your procedure. How long have you had it? Wishing you a speedy recovery :)
 
Devera said:
I had mine since March. We decided then to keep them in until after I had my colonoscopy done to check for Crohns, and then leave them during the start of the remicade treatment. Got them out 2 weeks ago, went in again on saturday as an emergency since I started abscessing again. Woke up to a very pleased surgeon who told me that in those two weeks, my fistulas have healed so much she couldn't get a seton (or even one of those horrible metal poking things) through them. There are no longer an opening on the inside. I now have a seton just through the abscess site, from skin to skin, not through the anus as before. She thinks that this current abscess was caused by some residue that were trapped in there as the tract healed up. My GI wants me on a 6 week schedule on the Remi for now, till I have completely healed. I'm happy to obey, haha!

Good luck with your procedure, Hingrum! A hard and tender knot could very well be an abscess, so I'm sure they will assess that during your procedure. How long have you had it? Wishing you a speedy recovery :)
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Same here.
 
I have had the fistula for a year. However, it was misdiagnosed at first. The knot/tender area has been there for about two plus weeks. It came up last month but went away after about a week. This time it is more painful and has stuck around.

My doctor said to expect to have the seton in for 8 months to a year. I'm hoping for 8 months (or less!) I have been on Entyvio for almost a year, but the fistula formed before I started the treatment and a couple months ago I added on 6mp too.
 
Does an MRI without contrast show up a fistula?

I have a perianal growth and my GI sent me for an MRI to rule out a fistula. The MRI showed some perianal inflammation but no fistula. I am going to see the surgeon tomorrow, and I really hope that we can rely on the MRI results.

Any experience?
 
I think it depends how good he technician is.
Usually they want the contrast.
If you have a fistula you will either get some drainage or it will abscess internally
If an abscess that should show in the mri without contrast.
WBC would also likely be elevated.
Absent any of the above you are probably in the clear.
 
hingrum said:
I have had the fistula for a year. However, it was misdiagnosed at first. The knot/tender area has been there for about two plus weeks. It came up last month but went away after about a week. This time it is more painful and has stuck around.



My doctor said to expect to have the seton in for 8 months to a year. I'm hoping for 8 months (or less!) I have been on Entyvio for almost a year, but the fistula formed before I started the treatment and a couple months ago I added on 6mp too.
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Welcome, hingrum. Have you been diagnosed with an abscess? I assume that's why you keep having the "knot/tender" area and they are planning on doing a seton. Wishing you the best.
 
buttER said:
Does an MRI without contrast show up a fistula?



I have a perianal growth and my GI sent me for an MRI to rule out a fistula. The MRI showed some perianal inflammation but no fistula. I am going to see the surgeon tomorrow, and I really hope that we can rely on the MRI results.



Any experience?
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Agree with robrich. At least my docs have said you need contrast to see the fistula.
 
Thanks for the information Robrich and GABoy. I haven't had any pain with it (I've had the lump for the last 4 years and it is getting bigger) and I don't think there is any discharge. It's just every time a doctor sees it they say it looks like a fistula.

I will discuss the MRI results with the doc when I see him - he had been called into surgery today so I have to wait another 2 weeks to see him now. I will ask him what his opinion is if he trusts the MRI results without contrast. I don't want someone to cut out a lump only to find it is a fistula instead.
 
Does anyone here have experience with a CT scan with contrast showing fistulas? I had one that was clean a month and a half ago, but since then I've started showing signs of fistulas. Plus, it was an abdominal scan, so I'm not sure it would have seen my entire pelvic area and rectum.

I go in for more tests next week--a barium enema and fistulogram/vaginography. But I'm curious if anyone else has thoughts on the accuracy of CT scans in picking up a fistula.
 
CatLady, I remember asking the doctors about CT the first time they wanted me to take a pelvic MRI, since a CT scan is quicker. They said that an MRI was more accurate than a CT when it comes to showing fistulas, and without the radiation.
 
Have had seton for almost 2 years now for fistula and abscess. It came out! I've been on Remicadee for 2 years and want to see what happens without the seton but terrified! Had seton placed 3 years ago and removed after 6 months only to abscess again. I'd pretty much accepted that it was going to be a very long term thing. Can not believe it came out. Haven't called surgeon yet because I know he will want to place asap. Any advice?
 
Looking it up online, an external fistula is accompanied by abdominal pain, painful bowel obstruction , fever, and elevated white blood cell count. An external fistula is accompanied by diarrhea, rectsl bleeding, a bloodstream infection,poor absorption of nutrients, dehydration, weight loss and worsening of the disease.
 
Maxwelljax said:
Have had seton for almost 2 years now for fistula and abscess. It came out! I've been on Remicadee for 2 years and want to see what happens without the seton but terrified! Had seton placed 3 years ago and removed after 6 months only to abscess again. I'd pretty much accepted that it was going to be a very long term thing. Can not believe it came out. Haven't called surgeon yet because I know he will want to place asap. Any advice?
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Call him.
 
Hi everyone some of you will know that I had a seton put in back in October. I saw my GI and my surgeon this week and they've said that I need an MRI scan and then if the infection has gone then I will start on either remicade or humira. My surgeon said that it doesn't really matter which drug I choose as they both work in the same way. He said that after a couple of treatments they would try and take the seton out and I would carry on for a while with the medication then they would ween me off it. He also said that there's a risk that the fistula will re-abscess and that I would be on the treatment long term. Just wanted to know if anyone is or has been in this situation? Anyone any ideas on which medication is best or any points to consider? Have you had a fistula heal this way or are you on this treatment long term? Thanks 😊
 
Hi Abbynormal. they both can heal fistulas. Remicade may be slightly more effective.
Don't agree that they should wean you off either of those. That is not standard protocol.
If they work you stay on them as there is often no going back and disease recurrence is more likely than not.
The decision to remove the seton is symptom dependent. No drainage or abscess, no nflammation normal WBC, then you can consider removal. FOr me Remicade was magical, closed the fistula almost immediately but doesn't last forever.
I would also recommend you do combo therapy with 6 mp or MTX, those you can wean off..
Antibiotics are also helpful in closing the fistula.
My advice, hit the fistula with everything you can. They can be remarkably stubborn to heal.
Good luck
 
Thank you Robrich 😊 I am currently on azathioprine and pentasa and have tried a few antibiotics before the seton- I've had my fistula since July 2014. It's taken a while for my GI to get things moving!
 
I don't know about Humira but if you go off Remicade it would be hard to go back on because there is a chance of developing antibodies!
 
Hey, Abbynormal, I'm currently on Remicade for fistulas, and it helps a lot. My GI told me that he would keep me on it for several years, even when the fistulas healed (if not for life, if it works that long). There is definitely a risk for reabscessing, the fistula tract can heal faster near the end, causing a build-up in the middle. Aza reduces the risk of developing Remicade antibodies, but if I were you, I wouldn't stop the biologics if it helps you.
 
Thanks Devera, it's good to know there's some success stories with this medication- even if it means being on it for a long time. The azathioprine and pentasa aren't doing anything for my fistula that's why I had a seton in
 
Hi Abbynormal

The choice to use remicade is a hot topic.Personally,it has helped me.I had a fistulotomy/seton placement last July and started infusions.This past September I had a seton removed,way before I thought was possible,and am doing well.I saw my colorectal surgeon two days ago and he hopes to remove another seton in three months if I continue to do well.

Have you heard of the top down approach? Fistulas,for example,can do so much damage.Rather quietly.A drug like remicade may stop the damage.You hit the disease with a powerful drug and it may help.Versus a bottom up approach,like pentasa.We are all different and it is an individual decision.

fermented foods are probiotics.
 
Hi Abbynormal,

I start Remicade on 12/15. I've now failed Humira and Entyvio. Here's hoping the Remicade is the answer.
 
Thanks everyone to replying with advice and support! I have my MRI on 29th December and then wait and see what happens- I'm sore at the moment and bright red blood seems to be coming from the fistula again so fingers crossed its not re-accessing. I'm hoping that which ever medicine I go on will get rid of the fistula and that my doctor will leave me on it a while because I wouldn't want to go through all that to then come off it and another fistula come up!
 
So, I had my fistulotomy with seton placement surgery on Friday. I thought I was feeling pretty good until I removed the gauze/packing the next day.

The surgeon put in two setons. He said he would remove one in ten days. I am not sure of the reasoning for this, but that he said that is how he was trained.

I took a quick peak at it today after my shower. It looks pretty freaky. I am still pretty swollen. I was wondering if it starts to look more normal at any point and not just a open wound? And if so, how long did it take to heal up a little?



Thanks!
 
@hingrum: In my case, it took around 1 month for the wound to start healing. It could take longer depending on the depth and extent of incision. Don't freak out however. One of those rare cases where it actually looks worse than it really is :)
You can however expect the tenderness to last a while though.
 
hingrum said:
How long did you have your Setons in? I posted in October when I found out I would be having the procedure. My seton surgery is scheduled for Friday and the last two weeks have been very painful. I have a large hard knot next to the anus. It is very tender. I have not had a doctor look at it since my surgery date is so near, but it is concerning to me. Anyone have this before their surgery?
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yes had it a bunch of times but it goes or should go away with the seton surgery.
 
I had my surgery a couple of months ago and I still have to wear one 😞 Their horrible and I get a rash and have to lather myself in savlon! The drainage will decrease and you will be able to wear a liner instead of something that feels like a nappy!
 
hingrum said:
How long should I expect to have to wear a pad for the drainage? It's only been a week and I already am tired of it. What do y'all use?
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I hate to be the bearer of bad news for all of you, but I've been wearing gauze pads since April. There is a cream specifically for fistula discharge. I'm out of the house and don't have the name, but will post a photo later.
 
hingrum said:
How long should I expect to have to wear a pad for the drainage? It's only been a week and I already am tired of it. What do y'all use?
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I've put all kinds of gauze and sponges and pads between my cheeks. The best ones I've found are All Gauze 12-ply surgical sponges. They wick away moisture and pull out dead flesh from healing also. They don't lint or leave fuzz or get stuck to the wound like some.

I hope you heal up well. I understand that's a thing people do sometimes. Good luck!

Aaron
 
Ok need to advice fellow seton sufferers! I have multiple Abscesses and Fistulas since April with a few complications including Necrotizing tissue infection. Anyway, one of my older Setons (the smallest) has just snapped and fallen out. What does this mean? What I do know is that for a few weeks I have been discharging and have had terrible pain especially at night. Also with an insatiable desire to scratch myself to death! Any advice on what I should do? I really don't want to ring my CRS up yet as I know I have a high chance of being back in hospital over or before Xmas. How long can I survive without one? Maybe forever? Help appreciated. Cheers.
 
You poor thing, hang in there!!!! As someone who needed to have their seton removed due to the severity of the pain i can tell you that yes it's okay for it not to be in there but you just need to be prepared for it to begin abscessing again soon. Your biggest job is to stay super on top of manually draining it ... When my seton first came out I was draining it maybe once a day and within a week I was draining it almost 6x a day. The key is keeping it OPEN!!!! It sucks, it's a nuisance and after each manual drain I would then take a bath to calm the area down, so time consuming as well but I understand the want of not being in hospital during Christmas.
I hope this helps. Just a little advice, I would call your CRS just to give a heads up and keep him in the loop (no pun intended lol, oh seton jokes) by be firm in that you want to stick with your plan.
Good luck.
Kelly
 
Not silly at all. Was your abscess drained before in hospital or doctor office? If so you may have an area where scar tissue has formed, you'd know by feeling around and it feels like a hard lump. If you find that push there when you feel that the abscess is swollen and full and this is super gross but it will either squirt or slowly drain out puss and some blood depending how much is in there. It will be sore for a bit but soon you will feel relief. If you don't have scar tissue just push on the surrounding area be anus and incision area and try and push out the puss- that's just how you keep area open.
 
Thanks Kel3333. All my abscesses where surgically drained under general in the hospital. I do have scar tissue and it's really tender and sore. I will ring my CRS to let him know. On reflection it would be foolish not to so thanks for that advice as well. I tried the manual drain this morning. All I can say is arghhhh! 😁😤
 
@needananswer. I had two setons placed November of 2013, then last July 31, 2015 with just a day apart both came out. You can just imagine I am in a state of paranoia that I will abscess anytime. My nurse also told me that I should be prepared and go to the doctor right away if I start feeling any pressure building up. But in the meantime that I felt okay, to do sitz bath after bower movements to keep it clean and the warmth will help keep things moving. Also, I was told to milk the area. I do this by gently massaging the tract to the exit hole so that if there is any fecal matter that were trapped hopefully will get out. I used to have a lot of itching when I had the seton and it tested positive for candida. I was adviced to keep the area clean and dry, and was given Nystatin powder. Calmoseptine is also a god send for itching. When my seton fell out though, I do not have itching anymore. Diet is not something my CRS believe in, but she is supportive of my decision to avoid certain foods that I strongly believe irritates my fistula. I am not saying this may work for you, but I try to avoid the following: Pork, shellfish, watermelon, coffee and corn. Hope you get relief soon.
 
Has anyone had the rectal advanced flap surgery? I had mine one week ago today... The pain has been honestly unbearable, today it brought me to tears. I have had to numb the pain a few times either alcohol because pain meds couldn't even help... I'm going to see the Dr tomorrow as he wants to make sure there isn't an infection or something else going on. I am going to discuss a pain management team while there as I feel like if this is "normal" I need a visiting nurse with an IV or at least stronger pain medicine... I have three little kids so it just makes this all extra tough as I'm laying down or just in tons of pain all day. Praying this is successful and I can be done with this "journey"
If anyone could share insight or advice on FLAP I would be so grateful. Thanks!!!
 
Kel3333 sorry to hear you are suffering and in lots of pain. Ive not had the advancement flap surgery but that is my next option for me which im still deciding to have. What I can say is my surgeon did discuss with me is that its a very invasive surgery and I will be in a great deal of pain for good few weeks after and that resting is very crucial to allow the healing. I would contact your dr and ask for some stronger pain relief, what are you currently on? Sorry I couldn't be of anymore help xx
 
Kel3333,

Please keep us posted on your progress. I am so sorry to hear what your going through. My CRS mentioned this procedure to me as well.
 
Thank you all for your kind words and well wishes... I am currently on prescription IBuprofin and Oxy/acemetaphine... The most difficult parts of be day are the hours following a BM... Yesterday was so bad and quite honestly scary that I've barely eaten in order to avoid a BM... That being said, haven't gone to the bathroom since yesterday morning and while I'm in pain it is completely manageable... Will discuss possibility of liquid diet? It's all complicated bc he had told me to eat a high fiber diet which is how I eat normally anyway, that does make me go about 2-3x a day tho... And like I said the hours following it each time are just horrific. On the other hand, he had told me to bears of constipation as that leads to straining which could pop stitches and then surgery fails... The pressure and mind game of it all is overwhelming.
Somehow someway I have made the car ride (via my mom!) to the city and am currently waiting for my appt. I will let you all know what happens here. Pray for some positive news!!!
 
Do you have a flap procedure if a seton doesn't work? I was reading up on it but don't fully understand what it is. Is it open or do they stitch it? Either way it sounds tough so I hope you feel better very soon 😊
 
I thought I will chime in the usual way - There is an excellent, proven treatment available in India. I was treated by it. Please see if my story is helpful in anyway (see link in signature).
 
I'm new here, so I hope I'm posting in the correct place. I just had an abscess removal on Tuesday and since then I've been having fecal drainage from the site. I was surprised to learn that I ended up with an external hole, in between my tailbone and anus that is not too terribly wide but is rather deep.

A little background on me, I developed a horrible debilitating fissure is December 2014, it continued to get worse and I developed joint pain around Valentine's Day, so bad I could barely walk. I also had diarrhea and skin tags began to form around my anus. I was prescribed diltiazem cream and large amounts of ibuprofen, in order to ease my joint pain in order to be able to walk. I had a skin tag removal x's 2 as well as Botox injection to my anus in hopes of healing the fissure. I lost about 17 pounds in 3 weeks and ended up having a colonoscopy that confirmed crohns, as well as a barium test that confirmed the same. I was prescribed steroids and lialda (4pills) to start and my body responded well and everything healed, I seemed normal.

Fast forward to October, I started to have severe pain to my entire buttocks and the inability to have a BM. Since my diagnosis I had urgency issues and a BM at least once but up to 3 times a day. I have always had rectal bleeding of some sort since I healed and just thought it was normal for crohns. I was diagnosed with a rectal abscess and prescribed Cipro. I responded well and my symptoms disappeared, only to re-emerge shortly after ending antibiotics. I went a few more rounds of Cipro and became resistant so I was bumped up to amoxicillin. That did the trick for the time being but knowing this would never end I scheduled surgery to have the abscess removed. I didn't really have any expectation as the dr said he wouldn't know what the damage would be until he got a better look during surgery. Dr had previously mentioned a possible fistula and drain/seton but explained that once he was in surgery he saw that there was a "bridge" over the abscess, he removed the entire abscess which was the size of a ping pong ball and the area was packed from I assume, my anal canal to to the outside of my body. I leak fecal matter nearly 24/7 and when I have a BM, it comes out of my anus and the abscess wound. Is anyone familiar with this and is it normal? Dr said I should be back on my feet in 2-3 weeks but right now I'm in so much pain that I need hydrocodone to be comfortable sitting/walking and I can't even urinate without being in a warm bath or on pain meds. I called the dr and left a message this morning but never got a call back and now it's the weekend. I'm really freaked by all the fecal matter and pain and wonder how a wound can heal with such nastiness constantly draining. Does anyone have any experience with this? FYI, I see my rectal dr Monday and GI on Tuesday. I've been reading that maybe remicade can speed my abscess wound to heal. Thanks for reading and sorry this is so long.
 
Welcome to the forum. I am sorry you have to go through this. I agree with you. I don't see how you can heal with all the nastiness passing through the wound. I hope you get some answers. Let us know.
 
Thanks, last night was terrible, I had so much yucky drainage and when I would go to the bathroom to have a BM it was clearly coming out of both holes. So far today I've just had normal amounts of blood draining. I know I need to make sure things are more solid and not diarrhea. My life seems to revolve around the consistency of my poop.
 
I have a questions for anyone that has ever had a fistula removed and bowl reconstruction. I have a fistula that drains next to my belly button. It's been draing on and off since October and actually almost stopped draing for a week but this weekend has started again. I'm thinking that I'm just going to have surgery to fix it because the infection is not going away enough that I can try humira or anything like that. So I'm wondering if surgery would be the best idea? Or try to get on to humira or something like that? And what does bowl reconstruction do? Do they remove the diseased part and fistula and hook everything back up or do you have to have a second surgery to hook everything up so it can heal? Just wondering if anyone has had any experience or gone through this. Thanks
 
matt82 said:
I have a questions for anyone that has ever had a fistula removed and bowl reconstruction. I have a fistula that drains next to my belly button. It's been draing on and off since October and actually almost stopped draing for a week but this weekend has started again. I'm thinking that I'm just going to have surgery to fix it because the infection is not going away enough that I can try humira or anything like that. So I'm wondering if surgery would be the best idea? Or try to get on to humira or something like that? And what does bowl reconstruction do? Do they remove the diseased part and fistula and hook everything back up or do you have to have a second surgery to hook everything up so it can heal? Just wondering if anyone has had any experience or gone through this. Thanks
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When I was in a rehab hospital recovering from surgery, my roomie was a woman with a fistula that drained next to her belly button. She came in every night to sleep and went home in the morning. She was on intravenous feeding, also called parenteral nutrition, it delivers food to the body through the veins, while she slept. This kept the fistula clean so that it could close up, which it did. Remicade, which I'm on, is very good at healing fistulas.
 
AFS said:
I thought I will chime in the usual way - There is an excellent, proven cure available in India. I was cured by it. Please see if my story is helpful in anyway.
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Do you have any scientific proof?
RebaP said:
I'm new here, so I hope I'm posting in the correct place. I just had an abscess removal on Tuesday and since then I've been having fecal drainage from the site. I was surprised to learn that I ended up with an external hole, in between my tailbone and anus that is not too terribly wide but is rather deep.

A little background on me, I developed a horrible debilitating fissure is December 2014, it continued to get worse and I developed joint pain around Valentine's Day, so bad I could barely walk. I also had diarrhea and skin tags began to form around my anus. I was prescribed diltiazem cream and large amounts of ibuprofen, in order to ease my joint pain in order to be able to walk. I had a skin tag removal x's 2 as well as Botox injection to my anus in hopes of healing the fissure. I lost about 17 pounds in 3 weeks and ended up having a colonoscopy that confirmed crohns, as well as a barium test that confirmed the same. I was prescribed steroids and lialda (4pills) to start and my body responded well and everything healed, I seemed normal.

Fast forward to October, I started to have severe pain to my entire buttocks and the inability to have a BM. Since my diagnosis I had urgency issues and a BM at least once but up to 3 times a day. I have always had rectal bleeding of some sort since I healed and just thought it was normal for crohns. I was diagnosed with a rectal abscess and prescribed Cipro. I responded well and my symptoms disappeared, only to re-emerge shortly after ending antibiotics. I went a few more rounds of Cipro and became resistant so I was bumped up to amoxicillin. That did the trick for the time being but knowing this would never end I scheduled surgery to have the abscess removed. I didn't really have any expectation as the dr said he wouldn't know what the damage would be until he got a better look during surgery. Dr had previously mentioned a possible fistula and drain/seton but explained that once he was in surgery he saw that there was a "bridge" over the abscess, he removed the entire abscess which was the size of a ping pong ball and the area was packed from I assume, my anal canal to to the outside of my body. I leak fecal matter nearly 24/7 and when I have a BM, it comes out of my anus and the abscess wound. Is anyone familiar with this and is it normal? Dr said I should be back on my feet in 2-3 weeks but right now I'm in so much pain that I need hydrocodone to be comfortable sitting/walking and I can't even urinate without being in a warm bath or on pain meds. I called the dr and left a message this morning but never got a call back and now it's the weekend. I'm really freaked by all the fecal matter and pain and wonder how a wound can heal with such nastiness constantly draining. Does anyone have any experience with this? FYI, I see my rectal dr Monday and GI on Tuesday. I've been reading that maybe remicade can speed my abscess wound to heal. Thanks for reading and sorry this is so long.
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Tuff said:
When I was in a rehab hospital recovering from surgery, my roomie was a woman with a fistula that drained next to her belly button. She came in every night to sleep and went home in the morning. She was on intravenous feeding, also called parenteral nutrition, it delivers food to the body through the veins, while she slept. This kept the fistula clean so that it could close up, which it did. Remicade, which I'm on, is very good at healing fistulas.
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Thanks for the reply. I just got my results back today from my CT and it showed inflamation in small bowl and part of colon and a communication between the colon and my abdominal wall. The good news was the large abscess has healed. The fistula seems to heal and stop leaking for about a week then opened up again for a few days and now has started healing again. I can't use remicade due to a severe reaction. But I'm hoping to be going on humira. I was on it about 5 years ago but came off due to costs. Now I'm able to get full coverage. So I m keeping my fingers crossed that this can work
 
AFS said:
I thought I will chime in the usual way - There is an excellent, proven treatment available in India. I was treated by it. Please see if my story is helpful in anyway (see link in signature).
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Can you pls post link here? Don't see it in your signature on my mobile
 
@ kel3333
Sorry to hear you are going through so much.

I think if one has a flap surgery it might be one of the covered indications for hyperbaric oxygen treatment

Maybe this will help in healing, though I recognize the challenge of doing this (it is a time commitment)
 
Hi all- just an update from my appointment last week. My Dr switched my medication to Torodal and Dilauded, the Dilauded has changed my life. Truly has lessened the pain to a degree I can manage and I just wish I had known about it sooner. Apparently Dr's typically hand out the same perceptions unless otherwise asked and my aunt who is a nurse was the one who suggested I ask for Dilauded after one week of unbearable pain on Oxy/IBuprofin // if anyone is in similar predicament, take my advice and ask for Dilauded!!!'

I am just nearing 3 weeks post Flap surgery and unfortunately I am still experiencing gas through outer incision, stool leakage through it and occasional involuntary urination (happened from seton placement as well so I'm sure temporary). I spoke w CRS on phone in regards to losing a few stitches and the stool leakage and I got the feeling these are t great signs... He said "this could happen now and then close in 3 weeks or this could keep happening and still be open and not healed in 3 weeks and that there's nothing he nor I can do either to change that... This certainly worries me I can't lie... I'm trying to hold out hope that miracles can happen and this could suddenly close and heal in next few weeks but I am very nervous...
 
Hey Kel3333

I'm sorry if you already answered this, but did you have a hospital stay after the advancement flap surgery? I'm considering doing this. I'm just wondering what I should do as I am trying to keep from going out of work for an extended period of time.
 
I begged for an overnight stay as my seton placement surgery had me so nauseous on the ride home that I told him I couldn't go through that again, so one night only. Typically they do day surgery for this procedure though which seems crazy to me.

What I am confused about is that my CRS told me approx one week of bed rest and when I asked if I could lift my kids etc once I felt ready be said yes as whatever would be would be regardless of what I do. However on this forum and many others I've read it seems that people were told they have higher chance of success rate with it if they are horizontal for 4-6 weeks...
I was in too much pain for first 10 days or so to do anything regardless and once they switched my pain meds I am feeling much better but still rest 80% of the day.
Does anyone have proper info regarding bed rest time???
 
I have had crohns for 17 years now and at the beginning I was very sick for about 5 years. I have tried, methotrexate, budisodone,predonsone, remicade (that can't take due to severe reaction). And humira but lost my coverage for it in 2010. The only thing that has ever worked is predonsone. But 6 years ago I developed a abscess and perianal fistula. And had it drained. It still leaks once and a while now but it doesn't really bother me. In October I started having pain and a lump form to the right of my belly button. Had the abscess drained and found out it was caused from a fistula from my colon. Now the abscess has healed but fistula still leaking and air comes out time to time. My GI wants to try humira but I'm just not sure if it's going to do anything. Or maybe just have surgery but I've always been told to keep surgery last resort. I guess what I'm wondering to I hold out for humira and pray it works. Or just have surgery. Just like to hear of anyone that has had any luck with either treatment. Thanks
 
I have not tried Humira yet. I have had surgeries for fistulas , an abscess and a resection for an obstruction. I would probably try what your doctor wanted to do.
 
ronroush7 said:
I have not tried Humira yet. I have had surgeries for fistulas , an abscess and a resection for an obstruction. I would probably try what your doctor wanted to do.
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Thanks for the reply. And yes I agree should try the medical approach first. Its just do frustrating when it seems to be healing for about a week then all of a sudden starts up leaking again. When u had surgery did it fix all the issues? And did you have a stoma afterwards?
 
This is a good q and something I wonder about for plug surgery too. I don't know but here is my two cents

I had read about people remaining horizontal for awhile after plug surgery also but my dr recommends I keep things simple but that it would not be healthy to lay around all the time.
It makes sense to me to keep moving within reason so as to get blood flowing to area and keep cranial sacral system going to support healing

With plug we have to be cautious in activity so it stays in, not sure if there is similar concern for other surgeries
 
I particularly remember ,since you mentioned it healing and then starting up again. I had an abscess that they drained. They only kept me overnight even though my wife begged them, with tears in her eyes to keep me longer. A week and a half after being released from the hospital, my abscess was back again. They ended up putting me on medicine by IV and kept me for a week. On another questiion that you asked. Did it fix all the issues? Five years ago, I had an obstruction. They did a resection and the obstruction did not return.
 
I was not finished with my reply and I hope what I said above made sense. Have I had a stoma? No. I hope you find some answers. Please let us know how you are doing.
 
Thank you all for your replies. And I hoping to get some answers after the holidays from doctors. I have an appoint Monday with I R to see if the tube can come out that was draining abscess. It's been in since October and my last CT in December showed the abscess has almosted completely healed. But the last couple days I've been feeling very tired and tonight have started running a bit of a temp if 99.2 and heart rate of 90 to 103. Hopefully tylenol reduces it and it's not the starting of a blood infection. Just worried cause the site wear the fistula opened is a bit sore and red and draining stuff again. Again ty all. It's nice to know there is support out there
 
ronroush7 said:
I was not finished with my reply and I hope what I said above made sense. Have I had a stoma? No. I hope you find some answers. Please let us know how you are doing.
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So after your bowl reconstruction they hooked everything back up and you were able to use your bowls as normal? And you didn't need a temp bag to let it heal?
 
Hi there, I hope everyone gets a chance to read the following: This has brought my fistula symptoms from extremely uncomfortable and unpleasant to almost 0. I make organic virgin coconut oil suppositories by melting it into mini ice cube trays. I use Nutiva organic virgin coconut oil (cold-pressed, not refined, 62% medium chain triglycerides).

I put the suppositories in a jar in the fridge. (Make sure they are small enough). After every BM, I put one inside - make sure it goes past the sphincter. The oil melts through the fistula and the results are amazing.

I used to get recurrent flare ups, where it would be so painful I could barely walk. I would exude puss for days, and would use toilet paper to collect it.

After using coconut oil, I never get flare ups. I haven't had one since using the coconut oil suppositories. My puss has gone from a level of 10 to .25. In other words I have a tiny amount of puss only on some days. I have no pain. It feels completely normal down there.

Note that my fistula has an entry/exit point that does not pass beyond the anus. If the exit point is past the anus, you will likely have coconut oil coming out the other end. But the coconut oil seems to 1. coat the surface of the fistula 2. disinfect it of bacteria. So it keeps it clean and infection free. Coconut oil is antibacterial/antiviral. This was my reasoning when I decided to experiment with it.

I wish you all the best with this. I truly hope it works for all of you! This has been a real mess, but at least the coconut oil has kept me symptom free as long as I use it every time I go to the washroom. Eventually I want to have this fixed, but being in Canada, I've had to wait it out.
 
Removed seton today. My NJ CRS says fistula starting to tighten around it, thus indicating healing. I've been told this before, when I was on Humira, and I abscessed again. Praying the Remicade works better.

Strange thing was this CRS says I am not a candidate for mucosal advancement flap because I have Proctitis which probably won't get better. The CRS at Mt. Sinai said that the medication will not heal the fistula and that I will have to have surgery to close it. He suggested the mucosal advancement flap after a period of time on Remicade.

I think I need to just go with the Mt. Sinai CRS as its 2 years and tons of meds with no luck. Any advice from you guys?
 
GABoy said:
Removed seton today. My NJ CRS says fistula starting to tighten around it, thus indicating healing. I've been told this before, when I was on Humira, and I abscessed again. Praying the Remicade works better.

Strange thing was this CRS says I am not a candidate for mucosal advancement flap because I have Proctitis which probably won't get better. The CRS at Mt. Sinai said that the medication will not heal the fistula and that I will have to have surgery to close it. He suggested the mucosal advancement flap after a period of time on Remicade.

I think I need to just go with the Mt. Sinai CRS as its 2 years and tons of meds with no luck. Any advice from you guys?
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Wishing you the best
 

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