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01-28-2017, 12:24 PM   #1
ramorrison
 
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Bleeding from a fistula?

Hey, had surgery about 2 months ago and had a seton placed in. And normally haven't had that much blood loss. But just after using the bathroom it was dripping into the toilet. Not sure why it would happen now? Any one else have an idea?
04-15-2017, 06:02 PM   #2
Sorebutt26
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Hey, had surgery about 2 months ago and had a seton placed in. And normally haven't had that much blood loss. But just after using the bathroom it was dripping into the toilet. Not sure why it would happen now? Any one else have an idea?
I know this is a couple of months old now. But I also have this and when I wipe, I get bloody clots on the tissue also

04-15-2017, 06:55 PM   #3
ramorrison
 
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Yeah I told my doctor, and he switched me from humira to remiCade. Not sure if it was the bleeding or a mixture of other reasons. But ya, I still get blood on the toilet paper and iv had my seton in since December. My blood results still show an increase in inflammation also, maybe thats one reason for the blood. Not in remission yet.
04-15-2017, 07:37 PM   #4
cmack
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Hi ramorrison,

This kind of thing is common with setons. If you are very fatigued, have a fever or in bad pain get help.


I hope you are OK,

cmack
04-16-2017, 01:40 AM   #5
Sorebutt26
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Yes I was told it's very common too.

I'm currently undiagnosed. Awaiting results of my faecal calprotectin. Inflammation levels are always raised in my blood tests, most of the time only slightly though. Colonoscopy 4 years ago was clear though

04-16-2017, 01:50 PM   #6
cmack
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I ended up having to use the shower nozzle and a clean hand to clean my backside as I always get blood and bad irritation from wiping with any kind of paper. I could really use a bidet. Maybe someday... There are kits for a regular toilet to have a bidet sprayer. To my knowledge they aren't heated and I'm not really into the cold water idea personally.
04-16-2017, 06:03 PM   #7
Sorebutt26
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I ended up having to use the shower nozzle and a clean hand to clean my backside as I always get blood and bad irritation from wiping with any kind of paper. I could really use a bidet. Maybe someday... There are kits for a regular toilet to have a bidet sprayer. To my knowledge they aren't heated and I'm not really into the cold water idea personally.
How about a sitz bath? I know these are more for pain than cleaning but it may relieve your pain too. Do you use moist toilet wipes rather than toilet roll?

I do as these are less irritating and get things much cleaner and then just 1 dab with toilet roll (good quality toilet roll) to dry off. But most of the time I will jump in the shower and have a quick wash as I'm obsessed with keeping the area clean lol

04-16-2017, 07:02 PM   #8
cmack
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Hi, Sorebutt,

I had my outer anal sphincter completely severed from complicated fistula surgery. Some of my fistulas went right through both sphincters. So now some of what was the inside, has become the outside and it is very, very tender. My seton days were over long ago, thank goodness, (touch wood). Sitz baths are good for setons a couple or three times a day too but if you have to go a lot, the shower method is way faster and easier. I never liked the sitz bath's, they helped with healing, yet they were cumbersome. A person really should always consult with a doctor on how often to use a sitz bath. Toilet paper and setons just never worked very well, not for me anyhow. Now I'm water wash only. Such is life.



Each one of us is different, best wishes,

cmack

Last edited by cmack; 04-16-2017 at 08:56 PM. Reason: grammar
04-17-2017, 01:14 AM   #9
Sorebutt26
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Hi, Sorebutt,

I had my outer anal sphincter completely severed from complicated fistula surgery. Some of my fistulas went right through both sphincters. So now some of what was the inside, has become the outside and it is very, very tender. My seton days were over long ago, thank goodness, (touch wood). Sitz baths are good for setons a couple or three times a day too but if you have to go a lot, the shower method is way faster and easier. I never liked the sitz bath's, they helped with healing, yet they were cumbersome. A person really should always consult with a doctor on how often to use a sitz bath. Toilet paper and setons just never worked very well, not for me anyhow. Now I'm water wash only. Such is life.



Each one of us is different, best wishes,

cmack
My fistula's run through the very top of my sphincter so I would lose ALL continence if they're repaired I have a Horseshoe Fistula and extrasphincteric collections. It has branched off in every which way possible.

The only way for repair for me is losing all continence and having a permanent colostomy

I am still undiagnosed with Crohn's or anything (just IBS currently). I'm waiting Faecal Calprotectin results at the moment. Because then obviously if it's crohns I can start on medication to at least alleviate some fistula symptoms.

If not, it's a case of live with it forever with setons (which I'm not sure I can do - and there's no guarantee it won't keep tracking) or have it repaired and a permanent colostomy!
04-17-2017, 11:59 AM   #10
Bufford
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I have a colostomy due to fistualas and I get mucous with blood during a flare and the rectal area can become soar and itchy. I use mouthwash applied to a paper towel and gently wipe off my rectal area. Relief is instant soothing and cooling. I figure that mouth wash is oral, then there should be no problem using it to clean the anal area. My GI supports my use of it and has heard from other patients he sees that use it.
04-17-2017, 12:04 PM   #11
Sorebutt26
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I have a colostomy due to fistualas and I get mucous with blood during a flare and the rectal area can become soar and itchy. I use mouthwash applied to a paper towel and gently wipe off my rectal area. Relief is instant soothing and cooling. I figure that mouth wash is oral, then there should be no problem using it to clean the anal area. My GI supports my use of it and has heard from other patients he sees that use it.
Bufford - do you have Crohn's or is it purely just fistula's you suffer with?

Never heard of the mouthwash idea. May give it a go. Does it not sting?

04-17-2017, 12:23 PM   #12
cmack
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Hi Sorebutt,

I feel for you buddy, that is a serious predicament. If it was me, I would deal with setons looking back on things. I know what you mean that they are hard to deal with. I wish you the best possible outcome. Talk to me any time.


Your teammate,

cmack
04-17-2017, 12:29 PM   #13
Sorebutt26
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Thanks cmack.

My concern with just leaving it and living with the seton is that things are only going to get worse! What if it continues tracking and connects to other areas and continues branching

At the moment I can only see colostomy as my only option of finally putting an end to this bloody thing!
04-17-2017, 12:39 PM   #14
cmack
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I'm sorry you have to go through this. I was once in your shoes, I really do hope you heal up. There is still hope. I had those bloody fistulas running every which way too. It was terrible.
04-17-2017, 12:55 PM   #15
Sorebutt26
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I'm sorry you have to go through this. I was once in your shoes, I really do hope you heal up. There is still hope. I had those bloody fistulas running every which way too. It was terrible.
Thanks cmack. How did you eventually get rid of these buggers?

04-17-2017, 05:39 PM   #16
cmack
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Hey Sorebutt,

I think I was just lucky and also I believe taking a stool softener,(lactulose) helped a great deal. I additionally had a lot of cipro and flagyl. So yeah, that and fistula surgeries, It was a rough time in my life. At one point they said I was having a bag and I just about went round the bend. I am very stubborn, I felt like that wasn't an option I could deal with at the age of 27. I refused and toughed it out. I still wonder if I was right or wrong. Oh well, the choice was mine and I made it. Still alive and kicking.


I hope the best for you, talk to me any time bud,

cmack
04-18-2017, 12:34 AM   #17
Sorebutt26
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Hey Sorebutt,

I think I was just lucky and also I believe taking a stool softener,(lactulose) helped a great deal. I additionally had a lot of cipro and flagyl. So yeah, that and fistula surgeries, It was a rough time in my life. At one point they said I was having a bag and I just about went round the bend. I am very stubborn, I felt like that wasn't an option I could deal with at the age of 27. I refused and toughed it out. I still wonder if I was right or wrong. Oh well, the choice was mine and I made it. Still alive and kicking.


I hope the best for you, talk to me any time bud,

cmack
Thank you.

Sounds very similar. I take lots of both of those antibiotics. I also take lactose. My concern is if I don't get them treated now.. they're only going to come back in a few years time and I'll be in the same situation again. Not sure I can go through all this again. I'm 29.

04-18-2017, 11:12 AM   #18
Bufford
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Bufford - do you have Crohn's or is it purely just fistula's you suffer with?

Never heard of the mouthwash idea. May give it a go. Does it not sting?
i have Crohn's, its active in my rectal area and further up by my resection where the colon and small bowel come together along with patches in both. I am currently in a semi controlled remission and for the most part I control it with diet and lifestyle that involves reducing stress.

Do try the mouthwash, it is cheap and does a wonderful job cleaning sensitive areas and cooling off fissures and burning itch of the area.
04-18-2017, 11:14 AM   #19
Sorebutt26
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i have Crohn's, its active in my rectal area and further up by my resection where the colon and small bowel come together along with patches in both. I am currently in a semi controlled remission and for the most part I control it with diet and lifestyle that involves reducing stress.

Do try the mouthwash, it is cheap and does a wonderful job cleaning sensitive areas and cooling off fissures and burning itch of the area.
Thank you. I'll give it a try. I'm sick and tired of these bloody fistula's! I'll try anything! I'm even willing to have a colostomy if it means getting rid of them!

04-18-2017, 03:53 PM   #20
DzdNCnfzd
 
Join Date: Apr 2017
I was diagnosed with Crohn's two years ago and have been on 150 mg of Azasan since then. I am very fortunate in that I was able to retire from my job and have had severe cramps only occassionally. My problem is this horrible, disgusting fistula which started in August. My GI ordered an MRI and CTSCAN with and without contrast. Nothing showed up and he said just deal with it. My urologist also did a cystoscope which showed nothing. I had a colonoscopy with another GI who is supposed to be top notch, and my colon looked good. There was just a small amount of inflammation (8mm) in my rectum. She said the only way they would be able to locate the fistula was with surgery, which they wouldn't perform unless an absess developed. The fistula wasn't too bad at the time, but now it is constant and I can't even walk around without the nasty discharge front and back. My GP has tried three separate regimins of Cipro, but all it does is to help my appetite a bit, which I greatly appreciate. My fever hasn't gone over 102, but I have no appetite and nausea, especially after I try to eat. Does anybody think going to a gynecolorectal (??) doctor might shed some light on the fistula's location? I'm just not up to another series of "come see me in a week" useless doctor's visits. My husband has become brain damaged and I am his ONLY caregiver, so I am extremely hesitant to try any biologics. Flagyl makes me sicker than a dog, but I'm afraid to keep taking Cipro in case it loses it's potency. Is this something I'm just going to live with? Worst of all is my husband constantly griping about me being sick and everything else under the sun. Thank you God for my Xanax😂😂
04-18-2017, 04:03 PM   #21
Sorebutt26
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I was diagnosed with Crohn's two years ago and have been on 150 mg of Azasan since then. I am very fortunate in that I was able to retire from my job and have had severe cramps only occassionally. My problem is this horrible, disgusting fistula which started in August. My GI ordered an MRI and CTSCAN with and without contrast. Nothing showed up and he said just deal with it. My urologist also did a cystoscope which showed nothing. I had a colonoscopy with another GI who is supposed to be top notch, and my colon looked good. There was just a small amount of inflammation (8mm) in my rectum. She said the only way they would be able to locate the fistula was with surgery, which they wouldn't perform unless an absess developed. The fistula wasn't too bad at the time, but now it is constant and I can't even walk around without the nasty discharge front and back. My GP has tried three separate regimins of Cipro, but all it does is to help my appetite a bit, which I greatly appreciate. My fever hasn't gone over 102, but I have no appetite and nausea, especially after I try to eat. Does anybody think going to a gynecolorectal (??) doctor might shed some light on the fistula's location? I'm just not up to another series of "come see me in a week" useless doctor's visits. My husband has become brain damaged and I am his ONLY caregiver, so I am extremely hesitant to try any biologics. Flagyl makes me sicker than a dog, but I'm afraid to keep taking Cipro in case it loses it's potency. Is this something I'm just going to live with? Worst of all is my husband constantly griping about me being sick and everything else under the sun. Thank you God for my Xanax😂😂
I'm sorry to read this could you try Metronidazole AND Cipro together and ask for some anti sickness medication to take with is (and you must ensure you eat when taking Metronidazole too to help the side effects).

I would definitely seek a second opinion though. I'm sorry you're struggling xxx

04-18-2017, 05:16 PM   #22
DzdNCnfzd
 
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I kept telling my GI that I thought it was the Flagyl making me so sick, but he did not agree. He and my pharmacist tried every anti-nausea med out there and none of them helped. The GI was about to put me in the hospital, but as soon as he took me off the Flagyl, the nausea subsided. Imagine that! Thanks so much for your quick reply. I hope things are going well for you.
04-18-2017, 05:20 PM   #23
Sorebutt26
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I kept telling my GI that I thought it was the Flagyl making me so sick, but he did not agree. He and my pharmacist tried every anti-nausea med out there and none of them helped. The GI was about to put me in the hospital, but as soon as he took me off the Flagyl, the nausea subsided. Imagine that! Thanks so much for your quick reply. I hope things are going well for you.
I can just about cope with Metronidazole tablets, they make me feel sick but I nibble ginger nut biscuits to help lol. But when I receive it IV in hospital it makes me vomit!

I'm not sure what other antibiotics are recommended as these seem to be the two key ones. Keep pushing though, don't leave it and just settle. I hope you feel better soon. Always here for a chat if you ever need it. May not always be able to help, but happy to chat xx

04-18-2017, 05:27 PM   #24
cmack
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Hi DzdNCnfzd,

Welcome, I'm sorry to hear you aren't getting proper help for your problems and your husbands unfortunate situation. You have found a great place for support. I agree that you should get a second opinion or even a third. You probably should see the gynecologist, I think if your issue pertains to your vagina that you should get it checked from there too.

Best wishes, keep in touch.


Your new teammate,

cmack
04-27-2017, 04:41 PM   #25
DzdNCnfzd
 
Join Date: Apr 2017
Well, I went to a urogynecologist yesterday and, lo and behold, one minute into my examination, she located an external perianeal fistula. She got me into a colorectal surgeon that afternoon and he scheduled an "examination under anaesthesia" and seton placement for Monday morning. I'm so glad I went ahead and saw the new doctor despite all of my other doctors saying it would be a waste of time. (Thanks cmack and Sorebutt26 for y'all's advice and encouragement!) Hopefully, I'll get some relief now. The only downside is that I am going to have to go on a biologic to complete the process. But the doctor said it's either that or a colostomy. Can anyone give me their advice as to which biologic would be the best alternative?
04-27-2017, 05:00 PM   #26
Sorebutt26
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Well, I went to a urogynecologist yesterday and, lo and behold, one minute into my examination, she located an external perianeal fistula. She got me into a colorectal surgeon that afternoon and he scheduled an "examination under anaesthesia" and seton placement for Monday morning. I'm so glad I went ahead and saw the new doctor despite all of my other doctors saying it would be a waste of time. (Thanks cmack and Sorebutt26 for y'all's advice and encouragement!) Hopefully, I'll get some relief now. The only downside is that I am going to have to go on a biologic to complete the process. But the doctor said it's either that or a colostomy. Can anyone give me their advice as to which biologic would be the best alternative?
I'm so glad you finally found the cause. It sounded just like a fistula. I have just got home from hospital a couple of hours ago. I had my seton replaced, and EUA and biopsies taken.
I'm currently awaiting test results on crohns as I've not been diagnosed with it yet. So I can't help on the biologics I'm afraid. But from what I understand, it's generally Remicade that is used to help with fistula's.

Good luck for Monday. Feel free to ask any questions. If there's anything I can help with, I will.

XxX

04-27-2017, 05:13 PM   #27
cmack
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Hi DzdNCnfzd,

I'm glad to hear there has been some progress. I can't comment on the biologic choices as I have never had any of them. I wish you the best of luck. Be sure to keep in touch.


Best regards,

cmack
06-19-2017, 08:49 PM   #28
cmack
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Hey ramorrison,

How are you doing? I hope things have improved with the seton. Give us a shout.
06-20-2017, 07:43 AM   #29
DzdNCnfzd
 
Join Date: Apr 2017
Hey Cmack:

Unfortunately, my flap surgery failed and I ended up in the hospital with uncontrollable diarrhea and dehydration. After an EUA and colonoscopy, my doctor said I would need a temporary colostomy. I don't plan on reversing it unless a cure for Crohn's is found. I don't ever want to go through that nightmare again. Having the ostomy is not as bad as I thought it would be. I can finally leave the house without worrying every second about having to run to the bathroom. It has given me my life back.

Thanks so much for checking on me. I hope you are doing well.

DzdNCnfzd
06-20-2017, 07:50 AM   #30
Sorebutt26
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Hey Cmack:

Unfortunately, my flap surgery failed and I ended up in the hospital with uncontrollable diarrhea and dehydration. After an EUA and colonoscopy, my doctor said I would need a temporary colostomy. I don't plan on reversing it unless a cure for Crohn's is found. I don't ever want to go through that nightmare again. Having the ostomy is not as bad as I thought it would be. I can finally leave the house without worrying every second about having to run to the bathroom. It has given me my life back.

Thanks so much for checking on me. I hope you are doing well.

DzdNCnfzd
Ah I've been wondering where you've been an how you were getting on. Sorry to hear you've had such a rough time, so glad to hear you're out of the other side now. I hope things keep improving for you.

As you say, at least with the ostomy you can now leave the house without too much of a worry xxx

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