Hello everybody! Brief description of my IBD lived with UC for 6 yrs, then had a j-pouch put in. Never was able get off fagel been on it for 17 yrs with the j-pouch. last yr two days before our 25 anniversary I'm have a emergency surgery to drain a abbess that I had. The fistula Didn't heal so I found a colorectal Dr that put in my seton last September. It still Bleeds like crazy daily. He now telling me that I never had UC but have crohns. My GI prescribe humira been on it for 6 wks. Plus I'm on fagel 3x a day then flip to cipro 2x a day. I'm a master plumber and can't fix my own plumbing! Thanks for reading my post. I'm looking for was to help get this fistula to settle down. I do baths daily, is there any other things that can help me. :ybatty:
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Best way heal my fistula that has seton
- Thread starter Kevinsplumbing
- Start date
Hi Kevin and a big warm welcome to the forum. Glad you found us 
I'm really sorry you're having issues with the fistula. You'll find quite a few threads in this part of the forum on dealing with them and others will be along soon. My fistula was internal so I haven't experienced a seton (yet!! )
I'm really sorry you're having issues with the fistula. You'll find quite a few threads in this part of the forum on dealing with them and others will be along soon. My fistula was internal so I haven't experienced a seton (yet!! )Helen thank you in directing me to get around in here, I look forward to find helpful hints. To med free is only a dream I'm happy you are feeling really good.
Thanks Kevin
Thanks Kevin
Hi Kevin,
Certainly seems like you have had a rough time lately. I also admire you for being on Flagyl for so long...that stuff always tasted hideous to me and made me gag. Is the cipro/flagyl for your jpouch or fistula?
If you feel the humira may be working then definitely stay on it for a little while longer, my doc advised me it could take up to 3 months for it to work. I would also ask your doc about using remicade instead as it seems to be more effective (or so I have been told).
For some immediate relief try sitting on a donut cushion, lying down as much as possible, if the skin is irritated try some barrier creams (I use calmoseptine for my 3 fistulas), wet wipes and travel bidet have also been a huge help to me. Another thing I been doing is keeping track of what I eat much more closely and my BM's so I know what seems to irritate the fistulas and what times etc. My fistulas seem to most active between 3pm - 9pm so I try my best to not do any activity and avoid trigger foods during this time.
Certainly seems like you have had a rough time lately. I also admire you for being on Flagyl for so long...that stuff always tasted hideous to me and made me gag. Is the cipro/flagyl for your jpouch or fistula?
If you feel the humira may be working then definitely stay on it for a little while longer, my doc advised me it could take up to 3 months for it to work. I would also ask your doc about using remicade instead as it seems to be more effective (or so I have been told).
For some immediate relief try sitting on a donut cushion, lying down as much as possible, if the skin is irritated try some barrier creams (I use calmoseptine for my 3 fistulas), wet wipes and travel bidet have also been a huge help to me. Another thing I been doing is keeping track of what I eat much more closely and my BM's so I know what seems to irritate the fistulas and what times etc. My fistulas seem to most active between 3pm - 9pm so I try my best to not do any activity and avoid trigger foods during this time.
Hello Queenfox,
The flagal does taste awful but have learned to toss it back of my throught and quickly swallow it down. If it bounce off the roof of my mouth it's on my tongue then your reminded why you hate taking drugs!
Yes I was on as low does when thing were normal if there is such a thing as called normal. It was for the jpouch.
This fistula sure does make my life a bit more challenging. Started up my own business 6 years ago it's still just me very stressful and demanding on me but it does allow me flexibility to start latter when I'm not feeling well.
I can't say that I've found food to be a issue for me but haven't kept a record of it either. The only thing I stay away from is tomato sauce type foods two is ok three x a week is the max more then that my stool changes quickly.
I've also noticed there different types of fistuals I'm not sure what I've got? Need to research this some more.
The bath seem to help. It's been very sore to touch and I will soak bring in my iPad and soak for hour or more. I use Epsom salt.
Thanks for the tips I will put these to use.
Kevin
The flagal does taste awful but have learned to toss it back of my throught and quickly swallow it down. If it bounce off the roof of my mouth it's on my tongue then your reminded why you hate taking drugs!
Yes I was on as low does when thing were normal if there is such a thing as called normal. It was for the jpouch.
This fistula sure does make my life a bit more challenging. Started up my own business 6 years ago it's still just me very stressful and demanding on me but it does allow me flexibility to start latter when I'm not feeling well.
I can't say that I've found food to be a issue for me but haven't kept a record of it either. The only thing I stay away from is tomato sauce type foods two is ok three x a week is the max more then that my stool changes quickly.
I've also noticed there different types of fistuals I'm not sure what I've got? Need to research this some more.
The bath seem to help. It's been very sore to touch and I will soak bring in my iPad and soak for hour or more. I use Epsom salt.
Thanks for the tips I will put these to use.
Kevin
Hi Kevin,
Thanks for some of the extra background information - good for you for not letting your UC/crohns get in the way of setting up your own business.
Something I think you should discuss with your specialist is the continual use of the antibiotics for your jpouch and – this hints to me of possible (chronic?) pouchitis (truly speculative on my behalf). If this is the case it may mean your diagnosis may still be UC and not crohns…From a research article:
“It has been suggested that in patients with pouchitis, the development of fistulae is most likely related to chronic course of inflammation and does not necessarily imply an incorrect original diagnosis of UC.” – Source: http://www.europeanreview.org/wp/wp-content/uploads/142.pdf
I am unsure where you fistula is but if it is connected to your jpouch/rectum and pouchitis is involved this may also account for some blood (again speculating here). You read more about the different types of fistula's here: http://www.crohnsforum.com/wiki/Fistulas
These are of course matters your doctor should be able to clear up so it is best speak to them about it then to worry yourself with 'what if's?'
Thanks for some of the extra background information - good for you for not letting your UC/crohns get in the way of setting up your own business.
Something I think you should discuss with your specialist is the continual use of the antibiotics for your jpouch and – this hints to me of possible (chronic?) pouchitis (truly speculative on my behalf). If this is the case it may mean your diagnosis may still be UC and not crohns…From a research article:
“It has been suggested that in patients with pouchitis, the development of fistulae is most likely related to chronic course of inflammation and does not necessarily imply an incorrect original diagnosis of UC.” – Source: http://www.europeanreview.org/wp/wp-content/uploads/142.pdf
I am unsure where you fistula is but if it is connected to your jpouch/rectum and pouchitis is involved this may also account for some blood (again speculating here). You read more about the different types of fistula's here: http://www.crohnsforum.com/wiki/Fistulas
These are of course matters your doctor should be able to clear up so it is best speak to them about it then to worry yourself with 'what if's?'
Why you have nailed Queenfox! Yes I was blown away when this new surgeon just started calling this crohns back in September. I've had 3 GI Drs and feel that first one was on top of it. Had my surgery back 96 didn't see anybody but yahoo who built my jpouch. I call him a yahoo because for ten long years I kept having blockages that make this big crawl in fetal position and almost cry. I finally got a dr agreeded to go in look. In side he found were my bag was once placed he didn't attach a blood vessel and the bottom have never open properly. He cut it out and rebuilt that section and thank the Jehovah that have not a blockages since.
But always had pouchitus every time I'd tried to get off fagel I'd be good for about week then the spasm would come and I'd junk for 3-4 weeks. Tried many types pro biotics some cheep and very expansive. Nothing seemed to work. My newest GI is young and is sharp and not afraid to get into new stuff. He said I should try the hamira I held off then this fistula came into my life. After this return message to you I will read those links you sent. I have this seton about on my left cheek just as it curves they made the one cut that went in about inch then on a angle another 3 inches. The first surgeon could stick hole index finger in this cut. That's were this seton comes out to keep it open to drain. I just can't believe how much it bleeds. Wearing a women's pad 3 1/2 mouths has opened my eyes as what wemen have to tend with when there periods.
This sight brings so much relief that people understand what the heck I've been going through. Thanks Queenfox is warm we're you live? It's below 0 here dam cold. Lol
But always had pouchitus every time I'd tried to get off fagel I'd be good for about week then the spasm would come and I'd junk for 3-4 weeks. Tried many types pro biotics some cheep and very expansive. Nothing seemed to work. My newest GI is young and is sharp and not afraid to get into new stuff. He said I should try the hamira I held off then this fistula came into my life. After this return message to you I will read those links you sent. I have this seton about on my left cheek just as it curves they made the one cut that went in about inch then on a angle another 3 inches. The first surgeon could stick hole index finger in this cut. That's were this seton comes out to keep it open to drain. I just can't believe how much it bleeds. Wearing a women's pad 3 1/2 mouths has opened my eyes as what wemen have to tend with when there periods.
This sight brings so much relief that people understand what the heck I've been going through. Thanks Queenfox is warm we're you live? It's below 0 here dam cold. Lol
Wow sounds like you and your jpouch have had quite an interesting history - I have had a stricture with mine so that feeling of blockage is horrible and I confess I did cry.
The hole for your fistula does sound quite large, I am not sure if this is common? Mine three fistulas all have openings that could only fit a piece of string through if you forced it...internally though my surgeon thinks the opening is getting bigger though - not smaller so thus humira isn't doing its job. Next step for me is starting remicade in February which is seen as more successful with these stubborn fistulas. Could also be an option for you.
Oh and yes the weather is lovely down under...sunny and 27 degrees (80 Fahrenheit?) in Sydney. I do envy the snow and cold sometimes - I have never seen falling snow and wouldn't need to keep killing spiders or mosquitoes they seem to love summer too.
The hole for your fistula does sound quite large, I am not sure if this is common? Mine three fistulas all have openings that could only fit a piece of string through if you forced it...internally though my surgeon thinks the opening is getting bigger though - not smaller so thus humira isn't doing its job. Next step for me is starting remicade in February which is seen as more successful with these stubborn fistulas. Could also be an option for you.
Oh and yes the weather is lovely down under...sunny and 27 degrees (80 Fahrenheit?) in Sydney. I do envy the snow and cold sometimes - I have never seen falling snow and wouldn't need to keep killing spiders or mosquitoes they seem to love summer too.
Wow I can't even image having 3 fistuals this one is killing me. You have 3 now or have had 3 over a period of time? How do you handle them? what brings you comfort?
Have no improvement since I've had surgery back in September.
Have no improvement since I've had surgery back in September.
I do have 3 now. And have had this before. It is a very common formation called a horseshoe. I handle them mainly with hot sitz baths. A few inches of real hot water in the tub as often as every few hours. Keep them clean with a very mild soap and water. Also triple antibiotic with pain relief for the sting. Inbetween a heating pad helps. Keeping them draining is important. I also soak with diluted DMSO. Dubicaine helps if they are aggravated. Try and keep food intake to a minimum until it clears up. Take Ciprofloxn or other medicine the doc prescribes, cortisone suppositories help also.
Also, if you can handle it, a firm massage of the whole area can get things moving, or a brisk walk (limping in my case)
Durwardian,
Can't even handle this one can't image you discomfort. Do have ceton in each of them? I usually take a bath twice a da. Running my business I have to go to work solve other people problems. It does drain if fact it seems I have more bleeding then then the clear yellowish discharge. I do change my pad several times through out the day. By the evening my bum is hurting can't sit. Fill the tub with Epsom salt that seems to help.
I will try to this triple antibiotic cream. Thanks for the tips this still all new to me.
Can't even handle this one can't image you discomfort. Do have ceton in each of them? I usually take a bath twice a da. Running my business I have to go to work solve other people problems. It does drain if fact it seems I have more bleeding then then the clear yellowish discharge. I do change my pad several times through out the day. By the evening my bum is hurting can't sit. Fill the tub with Epsom salt that seems to help.
I will try to this triple antibiotic cream. Thanks for the tips this still all new to me.
When I'm in the tub I do massage the area trying push on the area that hurts so bad, but I do it to see if lessen the pain. As for walking I but that hurts to dam pad rubs and causes discomfort. My work activity through out the day can be enough for me.
I did have setons, lost 2 working one day, had to go back to get it fixed, Dubicaine is great stuff too
I only work some as I can
No sense torturing yourself... if you want it numb you can use stronger stuff, but the cleaner you can keep it, the less pain you will have
What is the stronger stuff? Yes I agree keeping it clean has made feel better. I'd say there seems to cycles it goes through. Bleeds heavy for 10-15 days then slows down to a red tint then to a yellowish tint. 7-9 days then it almost stops draining then hurts bad. Mean time I'm using the sits baths in my case I just fill the tub. Then it starts bleeding again. This is making the pouchitus seem like a cake walk now. :ybatty: Thanks Kevin
Lidocain is good
How are things?
Thank you for asking.
I'm riding this out the best I can. I can't say I feel any better.
I wished I could sit with out being in discomfort. When home I have to lean back because I can't sit directly on my seton for more then couple of minutes. Unless there is some thick cushion. Lol
Been on humira for 3 months and taken flagal 3x, cipro 2x a day.
How are things for you?
I got my infusions approved, a week from tomorrow I start up again.
I got mine to heal pretty well. I use a rubber innertube, small wheel, like for playing in the snow. Best thing ever!
Also found a better than lidocaine drug for you, Tetracaine or Bupivacaine. Both last longer than Lidocaine.
I got mine to heal pretty well. I use a rubber innertube, small wheel, like for playing in the snow. Best thing ever!
Also found a better than lidocaine drug for you, Tetracaine or Bupivacaine. Both last longer than Lidocaine.
Also ask your doc for any ointment mix with Ketamine. I have my mixture sent from a compounding pharmacy in Oregon. If your doc faxes them a prescription, it is currently $1 per gram, 1 to 2 grams is the application, 3 x daily.
10% ketamine, 2% cyclobenzaprine, 3% diclofenac, 6% gabapentin, 5% orphenadrine, 2% tetracaine, in a cream, with DMSO to penetrate the area. It is the only mix so far that makes my testicles stop hurting
ID #7493, Item 6, fax 1-855-631-0023, pharmacist calls first to ask questions, they can modify the cream for each person's needs. 855-770-2070 is the number.
They take regular insurance if you have any
Immune Globulin for my crashed immune system
Very welcome, I wish there was more we could do for the pain
Hi kevinsplumbing,
I was digging up some paperwork for the doctor and ran across one of the medications they gave me a while back. Analpram was the name of it. It is hydrocortisone mixed with something. But it helped with the swelling and pain, in particular when you use the tetracaine with it.
That great I see my GI on Monday the pain is just awful they seem to think I should be all comfey. I'm concerned that bleed so much as well when it rowled up like the other night when I go to the bathroom it just continues to drip out like it had a bloody nose would drip.
So how are doing my friend you had that percedure done. Are you feeling better?
Thanks again for the tip. I need all the help I can get.
Thx
Hello queen Fox,
So how you been feeling?
Things really have not changed for me it's hard to keep positive at times. When people who don't understand will so how are doing. You can't even begin explain to them.
I'm been on the humira for 4 mouths that's a does every other week. I have found it to help at all. The surgeon asked me to flagel 3x a day and cipro 2x a day. With all that I have not seen a change. So we did a blood test today so we can get on mp6 and to increase the humira to once week. Stay on the flagel and cipro as I have been if this don't improve the then he want me start remacade.
Hello Durwardian We went to my GI today he increased my humira from one shot every two weeks to every week and we will be starting mp6 sometime this week. The does is based on the my blood test that they took today. Time will tell.