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DN
I developed a bad anal fistula and have been trying to recover from it for the past two months. At first they thought it was an abscess but further on they think that there was a tiny leak where my j pouch and rectum connect that created the fistula. I've had a seton (hope that's how its spelled) for the past 3 weeks with daily packing and sitz baths and its been healing great. I saw the surgeon yesterday and he did some treatment and now the muscle and wound hurts a lot and now there's stool discharge. He said to keep in the seton, I don't have to do the packing anymore and it should heal but if it doesn't then I need to have a stoma again to let it heal. Frowner Has anybody had this problem before? I will do whatever it takes to get rid of this so I don't have to have a stoma again... Frowner

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rachelravenrachelravenMember
I have an intrasphincteric fistula with a seton right now, but your whole issue sounds much more complex. Mine doesn't involve my pouch at all, it's below it. I've never had stool discharge, just mucus and blood, and when they cut the "bump," it wasn't a big cut at all, and needed only a wick packing for a day.

I'm under the impression my CRS wants to leave my seton in indefinitely... I've had 2 (first one broke at 2.5 weeks), so a total time now of about a month with a seton. I'm not sure my long term plan, but I know that you can have setons for years (just go look at the Crohn's sites... some of those poor folks have multitudes of setons in for many years).

I'd like a plan for this, but he's being so darned nondescript with making one... but again, I guess he's really thinking maybe a year. And right now, the seton isn't being bothersome, so I'm not too worried about it.
rachelraven
DN D. NocerinoMember
Yeah the fistula is at the scar tissue connecting the j pouch and rectum. The abscess at first was the size of a golf ball they said it was really bad but now its much better. What freaked me out is when he said I have to get a stoma again, I don't mind the seton but a stoma is a whole different project. A couple of days ago there was no stool discharge but after I saw the surgeon and after he was poking around now there's lots of stool discharge.
DN
S SJP3Member
Not sure if its similar but I had a tiny hole where the pouch met the rectum. The hole/leak lead to recurrent abscesses. Once they found the hole I had surgery done to make the hole bigger so contents would drain in and out instead of getting stuck and forming an abscess. May not be the same thing but maybe can't hurt to discuss with your doctor.
S
tammykathleentammykathleenMember
D. Nocerino,

I have one seton/fistula that is exactly the same as yours...and I have three more that are also leaking from the pouch but have tunneled out in different places (vaginally and rectally). I have had my setons for a year.

I was terrified by the thought of having a stoma again, as I did not have a good experience with mine. That seemed like all my doctors talked about when this first happened.

A year later...it's like crickets on that issue. If you can manage with the seton, generally you don't have to go the stoma route. People have setons for years and years.

I just wanted to alleviate some of your anxiety about returning to the stoma. I am fine, no infected fistulas because they drain through the setons. Is it perfect? Heck no-I have a bunch of plastic stuck in my arse, lol. But you do not need to go the stoma route if you don't want to.

Take care,
~Tammy
tammykathleen
tammykathleentammykathleenMember
Hi,

Yes, mine leak lots of stool. I wear the large sanitary napkins at all time. But I think this is normal-it means that the seton is doing its job. The stool is leaking from the pouch.

It's not ideal, but I have gotten used to my 4 setons. For me at this point, it was easier than going back to the stoma until the fistulas healed. I was scared they wouldn't (and so far they haven't on both Humira weekly and methotrexate injections) and that my surgeon would never reattach my j-pouch.

I hope all this makes you feel less anxious. There is nothing wrong with returning to an ostomy, but for me it was terrifying to go through that again, with the possible reattachment. I just didn't want any more blades near my stomach.

Good luck, feel free to PM me.

~Tammy
tammykathleen
lovedby2lovedby2Member
Hi! I hope it's ok that I chime in. I'm sitting in the hospital as we speak with what I'm understanding is about 2 feet of packing in my bum. I have been in tremendous amounts of pain off and on for almost a year and was only seeing my GI for this. I had scopes, scans, x rays etc... He always maintained that he saw a small pin hole at my re connection site but that it would heal... many in and out hospital stays and pain upon pain in my left side of my butt area later, I got a referral to a specialist.
Just as someone mentioned above...went in on Monday and the Dr. saw a 1/4 inch opening/track that lead out from my pouch, not in my pouch, to a pocket the size of half his fist he said. It was so congested with infection he had to cut the opening to the track larger to drain it and pack it. Still a little confused about what will happen but he said he will remove about 5" everyday and let it close on its own and watch it...scary to me, to think something will be open in there.
He also mentioned that there us a possibility that I was misdiagnosed, that may have had crohns instead of colitis! !

August 2011 diagnosed with severe ulcerative colitis
April 2012 total colon removal. End iliostomy
August 2012 rectum removed. Loop iliostomy
October 2012 reversal
Several complications, dehydration issues, chronic pain and now... I'm laying in the hospital bed with this packing inside.
lovedby2
CristolCristolMember
I just found out today I have an anal fistula. I had an abscess that was drained on 12/19 and then on 12/22 had emergency surgery for E. coli. The incision was made...it hasn't healed and now I find out I have a fistula. I have the seton put in on 2/21....so nervous for that. And I was just told I possibly have Crohn's not UC. It's so good to see you can live with these. I've had so much pain for the last 4 years that I'm contemplating going to a bag. Any advice?
Cristol
lovedby2lovedby2Member
Ok I am 5 days out of having my abcess cut and drained. Please help... I am now having severe stomach pain and uncomfortable bloating with everything I eat. I am also again living in the bathroom 20+ times a day. Why is this happening? I was doing good and only going about 7-8 times a day before this and wasn't having stomach issues.
Like mentioned above in my previous post, the track was at my anastomosis site and led to a pocket not in my pouch. The cut was made at the anastomosis site.
lovedby2
DN D. NocerinoMember
Wow I first posted this 9 months ago I never thought the discussion would last this long lol. Loveby2, I know the pain your going through because I went through the same thing 10 months ago. Just to update you on my situation, I have a stoma again because it was my best solution. Reason being is that its hard to fix a leak in the plumbing when there is something passing through it constantly. The plan of action at the time was to redo the ostomy so that the fistula can be repaired. The more I read up on it the more I realized that this is a better route. I know the ostomy bag sucks, personally I would rather not have it and I was very depressed when I got it back after getting it reversed when my j-pouch was formed. But its the best way to get relief of pain and its the best way to fix the fistula. I have had seton stitches since then and even though it reeeeeaally sucks, I am able to go to school and hold two jobs with no problems and after I'm done school I will be going back to surgeries and appointments every two weeks to get my j-pouch fixed. If you have any other questions you can message me personally I would be glad to give you the best advice I can and get you out of this because it breaks my heart to know that there are others going through the same pain that I did.
DN
DN D. NocerinoMember
I can't really say if the abscess will get better or worse. I just know from my situation, the packing didn't even hold for me because so much stool went through my abscess. So mine wouldn't have healed properly because the packing never helped it heal from the inside out which is what it needs to do. I've heard of cases with abscess', if there isn't a substantial amount of stool coming out from the J-pouch. If it can't heal from the inside out then that's where they bring out the ostomy so that nothing passes through it and it can heal properly. I hope this helps I'll pray for you as well.
DN
J JJAMember
Sorry to hear you are going through this-it also happened to me.

A lot of docs hear the word Fistula and automatically think Crohn's, but that is not necssisarily the case. Developing a fistula randomly is a possibility as do they commonly occur at the site of a previous surgery. I had the one fistual, never another, and many diagnostics since and NO ONE thinks I have Chron's, even though with new docs it is always questioned.

Unfortunately, I also had the lay-out procedure done on my fistula and it never healed properly/I was left incontinent. My doc never even TRIED a seton or meds other than antibiotics, so if you are new to this anal fistula game with a pouch, please insist on these more conservative treatments, and if it seems surgery is required, also insist on a colon-rectal specialist who has a lot of familiarity with pouches, not a cut-hungry general surgeoun like I did. I needed to have a sphincter-repair surgery to try to fix things. My Baylor docs said the opnly option was create a temp ostomy, then do the repair, give it time to heal without stool passing by it, and then later reconnect6, but my docs up in Minneapolis said they did NOT have to do a diverting ostomy to attempt this (they also said they know of docs in Houston who would attempt the repair without a diverting ostomy. The reason for the diversion is because of fear that the repair could break down and not heal properly with stool passing it by. I opted to go back to Minneapolis to have the repair done. I stayed with my parents so I was in the area and I could be closely monitored for about 5 weeks-they figured by then they would know if it looked like it would hold up or not. If not, the plan was to divert with ostomy at that time. Luckily for me nothing broke down, and I was able to have the repair without the diverting osomy. Unluckily for me, although it improved my continence greatly, it is still not 100%. With tucking a cotton ball up in there, taking a lot of thickening meds like fiber, immodium, codeine, and using a bidet to keep the area nice and clean all the time, I actually manage pretty well most of the time.

If you find you are not healing well and need a sphincter repair, you may be able to find docs who are able to do it without a diverting ostomy. The good news is that even if you find you must have another temp ostomy, there is hope to repair things and regain continence so you don't have to go back to a permanent ostomy, but it sure is not necessesarily easy and straightforward. I have heard of some people on this board who have also healed up just fine from the lay-out procedure to treat fistula, so it can happen, and I hope you all find yourselves healed and functioning again quickly. All the best.
J
S Sweetie1234Member
How were you diagnosed with the abscess or fistula? I have been to countless doctors, including my surgeon who performed my j-pouch surgery and I still don't have a clear diagnosis.

I've had a vaginal/anal ultrasound that revealed a tiny lump, which I knew was there because I can feel it through the vaginal wall. When I push on it, it feels like liquid (stool) leaks into the anus. I also have burning in the anus and having a rectal exam was extremely painful!

I'm scheduled to have surgery on April 17, but I'm extremely worried because I feel like my surgeon is going in blind, not really knowing what it is. There will also be a euro gynecologist there since it appears to be more on the vaginal side.

Any helpful advice?
S
rachelravenrachelravenMember
I had answered on this thread early on. My fistula was diagnosed by MRI. I would suggest asking about having an MRI. My colo-rectal surgeon said that's the gold standard to diagnose a fistula. He then did an exploratory under anesthesia (EUA) and scope, and he placed a draining seton (he absolutely refuses to do "cutting" setons; says they're too barbaric).

That was a year ago. I've lived with the seton for one year, and things are not better or worse. They're absolutely the same. He positively will NOT do any sort of fistulectomy on me, because of the risk of incontinence (we with pouches already have taken a hit on our sphincter tone, due to the big surgery we have; if you're a woman and have had babies, you've taken even more hits).

My 11 year old was just dx with indeterminate colitis/Crohn's colitis, likely, so I'm wondering if they would consider I also have an indeterminate or Crohn's picture now. All of 2012, I've felt "wrong," just haven't felt the same internally since then, and then in December of 2012, I developed the abscess that turned into a fistula. I still feel "off" compared to how I used to feel in a GI sense. I'm hoping the new GI guy I'm seeing in two weeks might consider my conversion to Crohn's, and offer me something like Humira to see if we could medically close my fistula. My surgeon won't go there with me, and just thinks I need to live with a drain in my butt, forever. Frowner
rachelraven
A aimeey17Member
Hi all, im new to this site but glad im here. I had refractory colitis since 2004 and total colectomy and jpouch in 2011. since I have experienced on and off cuffitis (more on) and now have a rectovaginal fistula. In January I had an explorative surgery to find the fistula try to repair and fix a fissure. The fistula has continued and is now more active then before the attempt to repair, and I believe I have now either formed another or the original has spidered off to a second vaginal opening. my local doctors have not wanted to try another fistula repair being that I have active colitis of the cuff they have started me back on Humira and imuran to try to quiet the cuffitis before attempting any other repairs. I just learned on this site that there are options such as lowering the pouch taking the mucosa of off the cuff, which could be helpful since my current surgeon told me that I have a larger cuff than usual. I didn't even know that lowering the pouch or the mucosectomy were options. I have an appointment to travel to the University of Virginia digestive health center for a second opinion and I'm hoping that these doctors have some better ideas than my local Docs. the Humira and Imuran are not working the cuffitis is getting worse while on these treatments and I believe I developed the new fistula while on them. I'm also having arthralgia and now even iritis seems like my whole body is going through an inflammatory process. this is really unfortunate because my husband and I were wanting to try for a second child and obviously we can do that with all of this going on. has anyone else experienced arthralgia or inflammation of the eyes or other external manifestations while having flare ups? Does anyone have any knowledge or advice on being told they have too much cuff? Has anyone had any experience with a surgery or treatments that were helpful with chronic cuffitis and fistulas? I would appreciate any and all advice. Thanks.
A
J JenhhMember

I did not actually think that would post. I forgot I was a member. I'm so sorry for the negativity.  It's been a long road.  This has been an ongoing battle for 8 years or so. It started with fulminant UC.  Lots of drugs, then Remicade, then rectovaginal fistula. At this point medication did not work. Had a total colectomy with end ileostomy.  Then a Jpouch surgery.  Within a month I abscessed, after a year many surgeries later. I had that Jpouch excised and a new one made.  I almost died, but I thankfully I didn't.  At my 6week checkup I had 3 more holes.  Then 1 moth later after so many prayers I healed.  3 months later I had my closure and then 10 days later I had my old pain in the ass back!  A new abscess in a familiar spot. After a year of hyperbaric chamber treatments, countless I&D's, mushroom drains, etc.  When they actually listened to me as I had been telling them the pouch was connected, I was given a gastrographic enima, the fistula was revealed.  Another drain after that! ��   I finally got my seton in after 5 tries.  I thought I was in the clear and now 2 months later I have urgency, blood, difficulty evacuating, pressure, so much pain in the rectum area(as I no longer have a rectum) but the draining hole where the seton is, is also very sore. It's all swollen, I'm hoping that the swelling is the reason for the seton pain, as the seton has become much tighter.  I fell like something is in there, but I can't actually feel the lump.  I 30+ surgeries deep.  I'm so over all this. Now on top of it, the surgeon that I normally see who is 3 hours away, moved to a new hospital in my state, but he is now 6 hours away and doesn't start until September.  I have to see a surgeon on Thursday who was on my last surgical case. I just don't know how much more I have left in me.  Alternatively, I have no choice to suck it up because I have 2 beautiful amazing children, and I should feel lucky to be alive.  Many days I do. I just can't seem to get myself together today.  After all these years, I thought I'd be able to cope better than this.  I realize this is just a bad day but there have just been so many. ��

J
BurkeBurkeMember

I this last year have had a anal abcess and fistula which goes from the perianal abcess inside the anal canal and have had seton placement to drain it. This has brought on a new indications diagnosis of perianal crohns and so it has been recommended for me to start using Imuran and Humira. Have any of you had success with Humira for these issues and for pouchitis? your responses would be great. Thanks. " The LORD sustains him on his sickbed; in his illness you restore him to full health." Psalm 41:3,  " My help comes from the LORD who made heaven and earth." Psalm 121: 2.

Burke
P pammieskrhMember
D. Nocerino posted:fistula for fistila
loped a bad anal fistula and have been trying to recover from it for the past two months. At first they thought it was an abscess but further on they think that there was a tiny leak where my j pouch and rectum connect that created the fistula. I've had a seton (hope that's how its spelled) for the past 3 weeks with daily packing and sitz baths and its been healing great. I saw the surgeon yesterday and he did some treatment and now the muscle and wound hurts a lot and now there's stool discharge. He said to keep in the seton, I don't have to do the packing anymore and it should heal but if it doesn't then I need to have a stoma again to let it heal. Frowner Has anybody had this problem before? I will do whatever it takes to get rid of this so I don't have to have a stoma again... Frowner

I also have an anal fistula for the past two years.  Has anyone here had one repaired successfully?

P

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