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L
My jpouch removal was 10months ago and I still have a chronic sinus tract and unhealed wound where the jpouch was probably caused by the multiple abscesses I had right after surgery. I have had a CT guided drainage and seven EUAs for incision and drainage, a two month wonderful time with a butt tube, and several kenalog injections. After EUA#7 yesterday, my husband was told that things really aren't healing.

At my next EUA in 4weeks, Dr.Remzi is bringing Dr. Shen in to inject doxcycyline or tetracylcline into the wound. I wasn't able to speak to Dr. remzi to find out more about this.. and am wondering if anyone knows what this is about. I can't seem to find anything on the internet about any of this. I know Dr. Shen has lots of tricks, but it this like a last ditch effort? Has anyone ever heard of this?

Also.. any idea how long this game can go on? I am in a lot of pain and really can't get on with my life because of this. I've been told I am in the minority of people with wound problems going on this long. And I know that sometimes they end up getting plastic surgery involved to cut from a thigh or butt muscle to fix the wound. But what does that really entail? And are the complications so risky that they just keep going through this EUA I&D game every four weeks indefinitely? I am completely losing my patience with this. I removed the jpouch to get on with my life... and it just doesn't end.
any input, ideas, info?
thanks.

Replies sorted oldest to newest

J jeaneMember
Liz,

I wish I could offer you advice on this topic as you have been incredibly helpful to those of us suffering from jpouch complications. I totally understand how frustrated you must feel. I am unsure what a sinus tract is but I am assuming it must be internal where your jpouch was created as you indicated. I can only imagine how painful this must be.

When they removed your jpouch did they not stitch your anal opening closed due to this problem? I am guessing the antibiotic is to aid in the wound healing or help you from getting infections while all of this is going on?

I am so sorry about your complications. Please keep the rest of us posted as to how you make out. I am sending prayers to you and lots of hugs as I so appreciate your advice on this board. I hope others may be able to offer you some helpful advice.
J
L liz11Member
thanks so much jeane.
Best I understand is that a sinus tract is a channel that goes from an area inside to an area outside.. kinda like a fistula except a fistula goes between two body parts - like the rectum and vagina or in my case the exjpouch area and the vagina. The fistula I had healed itself over by end of summer though.

I don't think this injection has to do with any infections. I've been told I don't have infections in there anymore. I had been on iv antibiotics and oral ones initially and then last summer again when additional abscesses formed. I wasn't stitched. I don't think most people are as the docs want things to heal from the inside out.
L
Jan DollarJan DollarModerator, RN, retired
OK, at risk of revealing the fact that my experience is from "olden days," when I was working, periodically they would use tetracycline powder as an "counter-irritant" to stimulate healing. They called it sclerotherapy. The irritation caused scar tissue formation that basically "glues" the non-healing wound. I've seen it used to cure a chronic collapsed lung.

http://www.ncbi.nlm.nih.gov/pubmed/9267178

Jan Smiler
Jan Dollar
n/an/aMember
Liz - I've been wondering how you've been progressing. So sorry to hear you're still having all these procedures over and over.

Dr. Shen injected doxycycline into my fistula 3 times. He explained it as Jan did - in theory, it should cause scarring that closes the wound. PouchoMarx had the same procedure in attempts to close a sinus, if I recall correctly.

It didn't take in my case. I hope hope hope it takes in yours. I think Poucho said there was a newer clip being used now to keep the doxy in the site a little longer, so that would be a good thing. The clip, in my case, was so very tiny I could barely see it. It was all painless.

I will send you the most positive vibes possible. Also, perhaps you could send Dr. Shen an email and ask him your questions.

Best of luck --
n/a
L liz11Member
ok that sorta makes sense. But the sinus tract goes up like 5 inches up into a big wound. So I don't know about a clip thing. I think poucho said it didn't work on his sinus tract too. But mine is a bit different cause I think its the actual wound that is the problem. The tract is just the narrow exit which goes out from the wound.

also jan.. is tetra or doxy.. contraindicted for penicillen or minocycine or cipro allergies. I'm allergic to so much stuff. I can just imagine that being the only thing not making it work!!!

Good idea for me to email Dr. Shen. will do that tonight as I always seem to get a response if I email him late at night!
L
PouchomarxPouchomarxMember
hey, yeah Shen discovered a sinus coming from my AZT line and it just goes into my tailbone area. He performed a kneedle/knife therapy via scope in June and did the injections. I then had the 2nd procedure the end of July where he discovered that the 1st procedure did nothing so he was a little more aggressive and used a different clip on it. i was supposed to have my 3rd procedure in October but cancelled it due to my huge medical debt and impending divorce. so i dont know if the 2nd procedure worked or not?? Shen said if didnt work i would need major surgery to remove pouch or do a redo. My surgeon believes from MRI that this is the leak i had from original surgery over 4 years ago. its exact same spot from the MRI. he does not want to do any type of surgery unless i am having issues like an abcess or something.I had so many issues with step1 and 2 that i would rather stay away from surgery. So i'm basically just in a holding pattern. I have been fighting with insurance trying to get them to cover both procedures since they are denying them about not being medically necessary... fun stuff
Pouchomarx
n/an/aMember
Liz, if I could do it over again, I'd ask Dr. Shen a few more pointed questions, such as how often has he performed this, and in what situations, how often has it worked, what are the chances of it working in this case (is this procedure still in an experimental stage?), etc.

Also, I can't say if this is a last-ditch effort: Dr. Shen tried it on my fistula as it is "absolutely no harmful" (except on the pocket-book!)

Best wishes
Nancy
n/a
Jan DollarJan DollarModerator, RN, retired
Tetracycline and doxycycline are in the same group and unrelated to cipro or penicillin. However, they are both in the same related group as minocycline.

So, the real issue is whether or not you have a true allergy to minocycline, or just an intolerance. It makes a difference. In a true allergy, further dosing risks anaphalactic shock. So, if you had past reactions of asthma like breathing difficulties, swelling of the throat, rashes and the like, then you need to be wary. But, if your "allergy" is that you could not tolerate the side effects, that would be different. In this case, it would be a topical dose that was not repeated over a period of time. So you need to sort that out and probably a good topic to ask Dr. Shen about.

I don't think this is experimental, since they've been doing it for decades.

Jan Smiler
Jan Dollar
Jan DollarJan DollarModerator, RN, retired
I am not sure, but probably you'd need multiple treatments, but still not the same as multiple doses orally for weeks. Most of what I was able to find about these wounds discussed surgical management of non-healing wounds. Here is a link to a full article if you are interested in learning more about the difficulties and processes.
http://pmcc.web-t.cisti.nrc.ca...type=html&lang=en-ca

Has a wound vac been tried? Consultation with a wound management specialist? Something to consider.

Jan Smiler
Jan Dollar
L liz11Member
I've been told wound is too far in along the lengthy sinus tract for a wound vac.
No consult with wound management yet. Seems like maybe I should ask for that next? Also someone told me that the wounds for jpouch excisions are harder to heal than with a straight shot proctectomy because with jpouch it is not the original tissue?
thanks so very much for the link. have to be in more positive spirits to read that fully because I see it describes the muscle repair.. which I've been told is major and seems like the last resort.
L
C chiromancerMember
I am really sorry to hear you are still having problems. I didnt realize your wound went that far "up". I thought it was mainly the anal closure area. How long did you have your pouch before it was excised? Do they think the length of time the pouch is in place makes a difference in its difficulty of removal?

I had mine removed mid Dec laprascopically, (disconnected and end ileo in July) there were a lot of adhesions but the surgeon(s) was very happy with the surgery (4 hrs). I have had very little pain. They also did a stoma revision and I now have a great "no hassle" stoma now. In general doing pretty well though I have been dealing with what they think is/was an abcess (CT scan) and was on oral cipro and flagyl for 10 days. I was having low grade fever and stinky excretions from my anus. That has resolved and I am not having much of anything coming out now. Antibiotics may have done the job keeping my fingers crossed. I opted to not have my anus removed so I do not have that wound to deal with, time will tell if that was the right decision. I really hope things turn around for you soon.
C
L liz11Member
Its been confirmed the plan is to I&D at next EUA and then inject doxycycline or glucose. 70%success rate. I imagine it would be repeat treatments. I have no worries about them trying any of it. But it sure would be a new thing if my body ever fell into the 70% success group! It usually manages to be in the 1% of failure group.

chiro-I had no idea they ever kept the anus when removing a jpouch. I had never heard of that. Hope it continues to work out for you. And yes, isn't a great functioning stoma just absolutely wonderful. Eating almost anything you want is a true joy!!!

And Jan.. one more question for you.. how long do you think is reasonable to continue with these conservative treatments for unhealing wounds until they go for the major ones.. plastic surgery? Its been 10months... and I know the risks.. but how much longer am I just supposed to be in this seemingly "holding pattern" situation?
L

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