Long term fistulas/Long Term Antibiotics

[napster]

I've had my R-V fistula for 2+ years, and have been on antibiotics for about 98% of that time. I'm not planning on having the fistula "fixed" surgically, as my surgeon did not recommend that - I have had a seton, for about 9 mos. now. I may opt for having my j pouch removed at some point, probably within a year or so, in a last ditch effort to get rid of the fistula(s). The happy side effect of the antibx. is the positive effect they've had on the j-pouch.

My question is - those of you who have fistulas for quite a while (1+ years?) - have you been on antibiotics all that while? Do your doctors recommend staying on the antibx. while you have the fistula? If so, why? After 2+ years, it's apparent that antibx. are NOT going to "heal" this fistula, so I am not sure of the point of staying on them.

All that being said ... I recently quit the antibx for about 3 weeks, and my drainage has increased noticeably. Other than the inconvenience, is drainage bad for the fistula and/or anything else?

I surely appreciate anyone's insight on long-term fistulas and long-term antibiotic usage - thanks!

 

[AlliRuns]

Fistulas for over 7 years here. My antibiotic usage has been intermittent. I no longer find them to be helpful. Long term antibiotic use also kills your gut flora and can put you at risk for tendon rupture. I'm also not a fan of the metallic taste. It gets tiring. I won't take any more flagyl unless I absolutely have to.

 

[DD2020]

Fistulas for over 7 years here. My antibiotic usage has been intermittent. I no longer find them to be helpful. Long term antibiotic use also kills your gut flora and can put you at risk for tendon rupture. I'm also not a fan of the metallic taste. It gets tiring. I won't take any more flagyl unless I absolutely have to.

To treat an enterocutaneous fistula, my doctor has recently put me on 400X3 flagyl for one month, in addition to 100mg aza. Should I take flagyl for 1 long month or should I stop it after 10 days? Is flagyl alone that effective or for fistula treatment cipro+flagyl combination works better?

 

[Catherine]

DD2020, are you taking any other medication to treat your Crohn's. My daughter has developed a small bowel to small bowel fistula while on aza. We are hoping by increasing her aza the fistula will heal.

 

[Christie]

Hi Iv had one since giving birth to my first daughter nearly 15 years ago, I havnt ever had antibiotics for it but have had lots of differnt procedures, there is nothing that can be done now apart from taking my whole rectum out, I have decided to live with it.

 

[juljul]

Hi napster,

Have they not tried you on a Biologic such as infliximab with the seton...to see if that would help.

Wild oregano oil could also be explored. The problem with both prescribed and natural is the risk for more gut dysbioisis, upon cessation in particular. You have to follow up with a good probiotic but not all supplements could be helpful.

The tendon rupture risk Alli is referring to is with fluoroquinolone antibiotics, such as Cipro 'The Risk of Fluoroquinolone-induced Tendinopathy and Tendon Rupture' ...it especially has to be taken into consideration for anyone who has a tendency towards tendinopathy/tendonitis.

If anyone is aware of any other antibiotics that can promote tendinopathy, can you post please...

The fluoroquinolones (such as Cipro) also mess with (antagonise) the GABA receptor. GABA is needed for sleep and relaxation.

Christie,
Egyptians have had some success using cauterisation for non-Crohn's's RVFs ...( 1996 reference)::: But presumably the RVF would have to be very small. I don't know if this has been used as a non-surgical option in the UK or US, or beyond, though it also looks to be utilised in India as well as Egypt...:::reference::: The Egyptians are also exploring the VYPRO™ hernia repair mesh for RVF repair (2010 ref).

juljul xx

 

[napster]

Juljul, my drs. have never recommended biologics. The consensus seems to be that nothing medically will "heal" this fistula, probably due to it being complex, and coming from j-pouch.

I've considered the oregano oil and have tried it for a couple days, but it seemed to mess me up. May try again. I also considered putting it in my sitz bath - anyone know whether this is allowable (the bottle says not to use in the genital region).

Levaquin is part of the fluoroquinolone family and it too can promote the tendinopathy. I've used it off and on for many years. Thanks for the insight on the GABA receptor connection, I had no idea and will look into that as well!

DD2020, I'd use the flagyl for the full month, unless side effects develop. I've taken tindamax ("super-flagyl" with many fewer side effects for me) and levaquin (similar to cipro) together and they were helpful with the drainage, but not with healing, in my case, apparently.

Christie, I am impressed with your fortitude in dealing with your fistula. How would you rate your drainage, especially after all this time and with not being on antibiotics?

I just can't find much info. out there re. the role of long-term antibiotics with fistulas. If being on them helps them to heal, I can understand taking them. But if they "just" help control drainage and don't do much else than that, I'm not sure whether the potential side effects outweigh that benefit. So if anyone has experiences in this area that they'd like to share, I'd love to hear.

Thanks, all!

 

[juljul]

Hi again napster,

I didn't realise you had a j-pouch napster. I don't know anything about Biologics being used in that context either.

Oregano oil was my saving grace (from God) because it helped me to get off the sofa curled up in pain unable to sit when I was at my worse (thank you God). However, I should also add that I have got it in my head that it proved to be a double edged sword for me after taking it for long. I thought it might have worsened my sacro-iliac pain, but I might be wrong and I used it externally on my elbow joints when desperate (dilute) so I am not actually sure on this...I needed the heat for some relief. Also, I found I had to keep increasing it step-wise because it stopped being effective at that dose. I also had to take breaks for it to be effective. Just my personal experience. I would not recommend using it in sitz baths to be honest because it can burn when on the skin and with that skin being delicate and sensitive, and especially if it says not to use it that way on the bottle. There are other herbs you could try in your sitz bath like goldenseal, rosemary and thyme (anti-inflammatory and ant-microbial) and soothing ones like licorice and marshmallow.

You could also do some research on macrolide antibiotics. I found this reference though there is no abstract to read: Fistula healing in MAP positive Crohn's disease patients following rifabutin and macrolide antibiotic therapy (link).

The macrolides seem to be effective where there is Mycobacterium Paratuberculosis.......

Three refs:

Gui GPH et al, "Two-year-outcomes analysis of Crohn’s disease treated with rifabutin and macrolide antibiotics", Journal of Antimicrobial Chemotherapy, (1997), 39, 393-400 (link for the full paper)

Sharfran I et al, "Open clinical trial of rifabutin and clarithromycin therapy in Crohn's disease.", Dig Liv Dis, (202), 34(1), 22-8 (link for the abstract).

Herman-Taylor , "Treatment with drugs active against Mycobacterium avium subspecies paratuberculosis can heal Crohn's disease: more evidence for a neglected public health tragedy.", Dig Liv Dis, (202) 34(1), 9-12 (link for the abstract).

juljul xx

 

[napster]

Good stuff - thanks juljul! I appreciate all the links and information and am going through them slowly but surely!

 

[dgg]

I've also been living with a peri-anal fistula since a few months after the birth of my daughter about 5 years ago. I was on and off (mostly on) flagyl and cipro for a few years and anytime I stopped the antibiotics, about 2 weeks later I'd get a big increase in drainage, so bad that I couldn't take it and went back on. I decided to start experimenting with diet changes and gave up dairy completely and I no longer have the issue of lots of drainage. I still have an active fistula with drainage that increases a little after I have a BM but it's nothing like what it used to be. I've been off of antibiotics for 5 months now and I really feel like the diet change has helped me. I know everyone is different but my surgeon is the one who suggested this so maybe it's worth a try?

I am also on Remicade (for 3 years now) and imuran but it looks like they won't heal the fistula so I am considering a LIFT procedure soon. Good luck to you!

 

[napster]

Thanks for your information, dgg, and glad to hear you've found something that helps you!

I too have begun experimenting with diet - trying a somewhat modified SCD diet - seriously reducing bad carbs and sugar. Can't say I notice a change quite yet, but we'll see.

Good luck on your LIFT, if you go that direction. I know a woman who had one done maybe a year ago, and it worked wonderfully for her...