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J
For anyone who has had an anal fistula, can you describe your symptoms? I am not having much luck using the find button.

I have severe internal anal pain and throbbing for the last few days with bleeding. Last night I decided to check my raw skin and noticed a bunch of blisters around the anal area that seemed to form in a raised line. I tried to see if there was any opening on the skin but could not notice any, however I am very raw and feel like the skin is broken near the anal opening.
I also noticed over the last few nights I have a lot of gas right in the bottom of my anal canal which is something I never experience.

Today, the anal painI internal and external) has been excruciating (on the side where the raised blisters formed) and my pouch has been very active as well with a lot of pressure in my cuff. I also noticed blood when passing stool today. In short, I am in a lot of pain and really feel lousy.

I am going to try and get seen in the next day.
This does not feel like typical cuffitis pain to me. Does this sound like it could be a fistula to anyone who has experienced one? I appreciate any input anyone can offer.
Thanks.

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J jeaneMember
Was your bleeding from the anal canal or fistula opening and how close to the opening was the fistula? I cannot tell if I am leaking I don't have any stool leaking but seem to pass blood and puss with stool at very lower anal canal. I have what appears to be several cuts right around anal opening and what feels like a raised tract of skin about 2/3 inches from opening that is a couple inches long. This area was blistered at first. Also it felt like I had a hard internal lump in right side that was aggravated everytime I passed stool that is better now since passing some blood a few days ago. This has been there forever and I always assumed it was an ulcer from my cuffitis.

Rectiv has helped with some of the ansl pain today so I'm not sure if fissures or not. So confused. Waiting to here from doctors. No fever at this time
J
TE MarieTE MarieMember
jeane, that right lump doesn't sound like cuffitis to me. What have your doctor's said about it after pouch scopes? I was awake for one and have pictures from another and never saw anything that looked like that in my cuffitis which was moderate to severe in one moderate in another. It feels inflamed and ridge like to me, if I'm feeling the right thing, but no discernable lumps.
TE Marie
J jeaneMember
Thanks Danielle. I have been suspect for awhile as the only thing that helps the terrible anal pain is cipro. Why I am constantly irritated and itch had me suspicious also becsuse if the openings are that close to the anal canal I am sure there is some slight seepage that has been going on. Aren't these discernable on scopes? God knows I have had enough of them while all this has been going on forever. How long did it take to get yours diagnosed and how bad is the leakage and have you had surgery?
J
TE MarieTE MarieMember
This has been going on forever Jeanne... It baffles me that after all the scopes and doctors you have seen that no one has noticed this! You have suffered so much, they have proposed surgery, etc. Hopefully they will get to the bottom of this and it is treatable without surgery. I can't wait to hear what your doctor says, this should be able to be looked at without a scope right?
TE Marie
J jeaneMember
I just need to accept that my jpouch has not been a success. I have multiple ongoing issues that do not correct themselves nor improve. The more time that passes, the more issues I seem to develop. It is sad, but when I read about others who are having great success, I realize my experience is so far from the norm for people who undergo this surgery. I will most likely have an anal scope, but as I sit here right now I am fighting back cramps and urgency and my spirit is really down.
J
rachelravenrachelravenMember
My issues started with a sore bump right near the anus. Eventually, it would "fill" with blood and gunk, then burst. It was quite painful.

A pelvic MRI is what diagnosed my fistula. I have a simple (most common) intrasphincteric fistula. I have a seton drain in it. Not fun, not "normal," but livable. It keeps the outer skin from healing over, so the fistula tract can drain. It drains a small amount of mucus and sometimes blood.

A scope will not diagnose a fistula easily. The holes are often quite small. Even with my MRI, my surgeon had a hard time finding the internal opening during an exploratory, but he did find it. The seton has helped immensely, though it's likely I may have it forever. He doesn't want to mess with my sphincters, because I'm totally continent. I just try to think of it as my "exotic piercing."

Smiler
rachelraven
J jeaneMember
Thanks Rachel,

I had an external and rectal exam today. My GI could not see or feel anything unusual. I have been taking rectiv eternally for a couple of days and the pain seems to have lessened. My GI thinks it may be an internal fissure, but I am having an MRI next week to check for an abscess or fistula and my GI thinks I should make an appointment to see my colorectal surgeon to be safe.

I have had chronic cuffitis for over a year and rectal meds do not help much. Cipro is the only real thing that keeps my anal area feeling as normal as possible with no burning/itching and chronic pain in that area.Without it, within a week or to my stools are loose and acidic and more frequent bathroom trips which starts the whole pain cycle going and the raw irritated skin in the perianal area.

Thank you for your input. I will post again after I have my exam next week. Maybe I will have some additional knowledge I can share with others in this position.
How far does the seton extend and is it painful or uncomfortable? Have you considered surgery for your fistula and if not is it because they would have to cut the sphincter?
J
TE MarieTE MarieMember
Jeanne, are you using Loperamide (Imodium) or similar medication when your stools get so watery? Under the direction of my GI I've gone from using none to 1 a day to 3-6 daily and it has kept my stools from getting the bad acid watery and has helped me from needing antibiotics as much for IPS and cuffitis. I still have chronic cuffitis and use canasa and also add anucort at a different time on some days. My GI calls them "break through" days, I consider all days with cuffitis as break through days as we were supposed to be cured Mad

The prescription Loperamide capsules work much better than the OTC Imodium because they work faster. I had a problem with the OTC as I'd end up taking too much and then I'd be in pain from stool that was difficult to pass Frowner
TE Marie
J jeaneMember
Thanks Te Marie I have tried both without any success. I will try again. It seems without the cipro I tend to also get that nasty cramping and pain and increased movements also from the chronic pouchitis. At this time after being on them almost consistently for three years my Gi snd I discussed staying on and getting too least dose posdible which hopefully will be 500 mg a day of cipro with pulsing days. At least that awful throbbing Amal pain is better. Thank you for the responses.
J
TE MarieTE MarieMember
Jeanne,
I'm still taking Norco 10/325 for pain daily up to 4 times daily which slows my system down as well as helps with abdominal pain. Have you ever taken any pain medication for cramping? My Internist prescribes it as she sees me at least 4 times a year and my GI is fully aware that I am taking it. I usually end up taking 3 per day but on a good day take 2 on bad days take 4 and wish I could take more. I also take dicyclomine during bad cuffitis flares, where I'm using anucort suppositories in the day time along with the night time canasa. This antispasmodic makes my vision blurry but other's I've tried make me throw up. I dislike taking this cocktail of medications but it's what we've worked out that's working best for now. You know it's all a moving target as things continually change.

I hope the MRI finally gets to the source of your main problem and that you don't need surgery, that several surgeons are ready to do,, to solve it!
TE Marie
J jeaneMember
I just got a script for percoset. I have not taken it yet as the rectiv seems to really be helping. I cannot take any more recital meds at the moment as I really think they were making things worse. Glad to hear you have found something that is helping you also. Ill post after the MRI. I'm on 1000 mg of cipro and plan on staying on it until after the holidays. I just wish I could get off this medicine as I worry about long term side effects and it loosing its effectiveness.
J

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