Fistulas and snorkeling - ok to do? and Healing possibilities?

[jimlaman8]

Greetings all.. i have a what might be a dumb question and a serious, but no less here goes..

I have what started as an abscess.. then was drained.. turned out to be a fistula (anal, left butt cheek basically for the other exit point)..

They did a seton.. it became uncomfortable so they removed it.. the surgeon said it wouldnt matter if it was in or not. He also said that drugs might heal it, but only temporarily and basically i was stuck with it for life.

I've been on humira now for a year to try to battle crohns.. mostly in my small intenstine.. but also IBS (5 times a day for 22 years, though crohns officially not till last year in 2014).. the ibs didnt reduce but they said the inflamation in the small intestine did, so i'm still on humira even though nothing i've tried has cured the ibs, ever (food alterations, other meds, nothing works)..

So back to the fistuala.. humira has made no change in this.. i still puss daily and i think stool comes out.. it gets sore.. often like a golf ball hard feeling under the skin in the exit point.. (scar tissue?).. it will bleed, some days worse than others.. constantly leaky, though for a day or two it will turn to a trickle, then become uncomfortable to sit again (more so recently)..

So the first question is.. has anyone ever had humira cure this? if so.. ever way later, like 1+ years.. or some other cure.. other than a "bag", which i'd never really want to consider.. the surgeon said that other cutting techniques would probably not work either, or lead to incontinence.

Now for the silly question..

Given that i have a leaky condition, often somewhat bloody.. (usually minor).. i'm about to go on a first bahamas cruise.. is there any reason why both going in the ocean and/or snorkeling would be a bad idea?

I've been told general swimming was ok in the past.

I guess the reason why I ask, is for snorkeling with live fish nearby, particularly barracudas and maybe some small sharks.. with a bloody situation, if that puts a person at increased risk of a bite, ridiculous as it may sound or unlikely.

Thanks in advance for any suggestions

 

[Robrich]

I think your biggest risk is bacteria in the water entering your blood through the fistula.
Make sure you are not swimming in polluted water.
As for the fistula healing, if humira hasn't helped yet it likely won't.
To get my fistula to heal we added MTX TO ENTYVIO, along with antibiotics.
I would strongly recommend antibiotics if you want it to heal and especially if you are swimming with it. Flagyl, Cipro and augmentin work.
Also see thread about how we healed our fistulas.
https://www.crohnsforum.com/showthread.php?t=74939

 

[ronroush7]

I know this wsd not your question but the easy you talked I am wondering if you need to try another biologic? As far as the water goes, on the 80s, I was thrre three times. Back then, that was the cleasrest water.

 

[jimlaman8]

Thanks for the replies.. yeah i think ill be ok in bahama water..

however i had another development in my situation.. turns out i ended up with another abscess.. just above the old year old fistuala drainage opening.

This one is draining on its own though, or seemed to be.

Surgeon said to come in yesterday morning as an addon, he would drain, with possible tube inserted or seton added.. waited all day, 9 hours and he never got to me, had to bail at that point.. checked it and it was continuing to drain.

Checked it again this morning, while still draining it had slightly hardened, so its my guess i'm going to still need to go under for a draining at least, after the trip.

I called into the dr office, awaiting an antibiodic.

Thanks for the info from others on what has healed things..

Isnt ENTYVIO another type of biologic, like humira, that was recently approved? i had asked the dr about this before humira and she panned the idea for now.

I really hate to go on any other biologic.. even with humira there is that small cancer risk.. I was hoping for another way to heal.. or maybe the ointment ideas in that thread might prove useful too.

Either way, nothing i've ever tried has cured the trips to the bathroom each day..

In terms of getting help with the abscesses and fistulas, i'm assuming this falls in the realm of my digestive doctor, not the surgeon who does abscess draining.

 

[ronroush7]

Yes , entyvio is another biologic. There is even a thread on here concerning it. I am not totally convinced that Stelara is helping me and I have wondered about either entyvio or Humira for myself. Are you on probiotics? I asked because you mentioned waiting for an antibiotic and I was told when I go on antibiotics to double up on probiotics.

 

[jimlaman8]

Yes , entyvio is another biologic. There is even a thread on here concerning it. I am not totally convinced that Stelara is helping me and I have wondered about either entyvio or Humira for myself. Are you on probiotics? I asked because you mentioned waiting for an antibiotic and I was told when I go on antibiotics to double up on probiotics.

I'm not on any probiotics at the moment, or they havent told me to try any..

Awhile back i had tried some higher number count probiotics (forget which one), but in terms of movements per day did not help, however i'd re-try some of these if it might help with general healing.

 

[Robrich]

Jimlanman I have had this disease 50 years seen dozens of doctors not one has ever told me to take probiotics even when I have been on antibiotics.
They know drugs, get their education from big pharma and that's all you will get from them except for at best a shrug if you ask about anything outside of that.
This is a disease we have to take personal responsibility for. That's why this forum is so helpful and important.

 

[jimlaman8]

Yea I'm certainly open to outside thinking and methods. What sort of probiotics have helped.

Also. This might sound dumb but with a bleeding abscess or fistula, does this increase the odds of a shark attack while snorkeling? I can't seem to find any real data on that.

 

[ronroush7]

About the probiotics, my doctor likes VSL3. But it is expensive