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when will fistula drainage stop??

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Crohn's Disease
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Posted 12/31/2016 2:58 PM (GMT 0)
This current abscess has been draining for 10 days now. I'm in such pain from the pressure but also from the actual fistulas themselves. The tract is open without a seton. There's now 2 tracts on either side of my butt hole.

All I'm doing is popping pain killers and in the bathroom doing hygiene. I have little if any QOL. The surgeon said once the seton was placed (tract open) I'd have no pain, be able to sit and there would be little drainage. But here I am with the tract open and a complete mess. I fear chairs (refused going out to a bar because I knew I couldn't sit on the hard stools) and am wondering how things got this bad that I'm constantly in the bathroom cleaning up after myself.

When will this infection end? I've been on clarithromicin for 4 weeks and have had 11 HB treatments. I had a break down before going in to the chamber yesterday. The nurse just kept hugging me saying HB would work and I'd get better. I don't know what to do. I'm so depressed and can't stop crying.

The drainage is so disgusting. And now I'm passing gas through the fistula which is very weird. Does this mean I'm getting worse? The last few days I've also noticed more air bubbles coming out of RVF too.
Posted 12/31/2016 8:29 PM (GMT 0)
I didn't go back to work immediately after my setons were placed. I've had a total of 3. Currently I have one left involving a lot of sphincter muscle so it's a complicated procedure and my surgeon prefers to hold off for now. The draining doesn't really stop it just lightens up but the more activity the more drainage. It definitely gets better with Seton placement. Hopefully that's what you're looking at as sad as that may sound. Are you by chance doing sitz baths? I found those extremely helpful with as hot as I could tolerate water. I'd soak for a minimum of 10 minutes each time I went to the bathroom. Good luck just know it does get better. And as far as passing gas through the fistula that's normal doesn't mean you're getting worse one of my fistulas was so bad I would pass feces through it. Of course if you have questions hopefully your surgeon is willing to assist via phone instead of always needing an appointment in the office, I've been pretty lucky this way. Again good luck!
Posted 12/31/2016 10:56 PM (GMT 0)
So if it's always draining when is it removed then? And what gets rid of the infection? This is pretty disgusting.

I should add that the gas issue is new. I've had these things since Aug and it's only now that I'm passing gas through the rectal fistula. It feels awful and is disconcerting. This after 5 months of humira, and just starting imuran and hyperbaric. My only hope I guess is hyperbaric but I don't know if it will kill the abscess. IF it can do that then I have a chance. I'm on 12 dives; to the maximum of 60.

I don't know how I'll ever have a relationship again if I'm wearing pads and constantly wiping.

Thank you for the response. Appreciated.

Post Edited (U B Tough) : 12/31/2016 5:25:05 PM (GMT-7)

Posted 1/1/2017 12:20 AM (GMT 0)
The only thing that closed up my fistula was Remicade, and even then it was only for 6 months.
Mine is 7 years old now.
It never really goes away, but it does get better and more manageable.
What's your long term treatment plan? Antibiotics are toxic and not enough!
Posted 1/1/2017 12:28 AM (GMT 0)

gypsyfp said...
br />It never really goes away, but it does get better and more manageable.
What's your long term treatment plan? Antibiotics are toxic and not enough!

Wow. That's even more depressing. Unsure how it could get more manageable. Draining is draining.

I'm on abx, humira, HB and imuran as per signature
Posted 1/1/2017 3:55 AM (GMT 0)
I place gauze up against the drainage area. Helps a lot. Remicade is supposed to help and other meds like it. But honestly sometimes its permanent.
Posted 1/1/2017 7:23 AM (GMT 0)
Hi U B tough, I had mine for three years, I had named it (them, actually) Freddy after a particularly hard to deal with PCP. At the time I chose not to go on biologics ( for numerous reasons) I had looked into HB treatment and really wish there had been a doctor near me that would have supported that treatment, though from the research i did it seemed to have mixed results and if you haven't done so already I would encourage you to look at published papers on it relating to crohns. I found this study that says it requires over 40 treatments in many cases to fix/ see progress.
https://www.ncbi.nlm.nih.gov/pubmed/22693080
I never had surgery for mine. because of where it was it was not possible. It was one of the most hellish parts of having crohns, I can completely relate to what you are going through with most of it. I learned to keep gauze or paper towels to absorb drainage. I had topical lidocaine for the pain but that often wore off pretty fast and Id have to reapply. I also found that the prescribed topical cream used for yeast infections helps considerably and calms it down for long periods and so did several doses of Diflucan. Also, when the disease wasn't as active, the fistula drainage lessened considerably. Humira finally healed it for me but it took about 6 months (I feel extremely fortunate about this because I was afraid it would never go away and humira is less likely to heal it than remicade) I still infrequently get pain there but nothing major and I've been assured by my Docs that it is healed.
How is the disease severity otherwise?
Don't give up hope! if those treatments don't work, there is always remicade. I'm on it now after stopping humira due to side effects and its kept it from coming back.
Posted 1/1/2017 5:57 PM (GMT 0)
Hi Lab-- thank you. I've been on a downward spiral since this rather uncivilized introduction to fistulas, especially the RVF in Aug. I had never heard of them prior. Had UC for 15 years then surprise!!! Congrats you have fistulizing crohns.

Do you mean that you used the yeast cream internally (vaginally) and it helped the fistula?

I've been on humira for 4 months exactly. I had high hopes and so did my docs but apparently as long as I'm abscessing/draining the fistula won't close. So again I don't understand what kills the infection to stop the drainage. A seton just keeps the tract open but doesn't kill the infection. I was on Remi about 10 years ago; it didn't really do anything and didn't stop the formation of pyoderma. So basically it's humira/imuran/HB or I'm royally....I'm on 80mg weekly of Humira. I think I have 3 fistulas in total. Triplets to namesmile

The most distressing thing is the RVF; although I'm lucky so far that there's no stool passing, "just" gas. Funny, I'm now afraid to fart and grab myself every time I do. With UC, I celebrated farting...it's a good thing! Now, I hate, hate, hate it. The RVF has caused vulvodynia and both have really affected my mental health. I'm very depressed. Can't exactly talk about it and don't know how to deal with any issues of intimacy.

Yes, I've read a little. Canada Mark found an article using HB combined with remi and anti-Map abx to heal all 9 patients, including one with a RVF. I tested positive for MAP but had violent reaction to 4 abx so I'm not sure what to do. I'm on clarithroymicn for 4 weeks now. It's not hurting and hope it will help. I've also read that HB helps kill "serious bacterial infections" and brain abscesses....I believe the perianal abscess is caused by bacteria...and perhaps if it kills a brain one, it could kill a butt one too!!

Guess I could try Stelara if these don't work. Like you, I'm extremely worried (almost frantic) that these won't close.

My GI said to "milk" the abscess so the tract doesn't close. As much as I hate this drainage I've been through 3 abscesses since Oct. The pain is excruciating. So I guess also in this case, it's better out than in.

I'm going to post my HB update on the UC side later this week (after my 15th). There have been improvements, small ones which is better than nothing!
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