Long, long term antibiotics?

[Jobell]

I have just found this forum, and seem to be a little bit different from most others. I was diagnosed 10 years ago (at age 40), had stricture and a resection around 7 years ago, and since surgery I have had some instances of fistula/abscess which recurs any time i stop my antibiotics.
The only med i have ever taken for my disease is antibiotics, cipro and flagyl combined. if i stop it, within 2 weeks i have abscesses again.
i suffer regular diarrhea, but learn to live with it.

my fear is that the antibiotics are dangerous. i have been taking them non-stop for over 5 years (low dose).
does anyone know anything about this? is it really safe? my doc says it is the lessor of evils; i cannot take prednisone due to bone density issues and cannot take immunesuppresants cause of absess etc.

everyone here seems SO MUCH better informed than i am.

 

[tiloah]

This is so crazy to me. The longer you take antibiotics the more likely the bacteria causing your abscesses will become resistant to them, and then when your really need them, they won't help.

I am so sorry you have been dealing with long term antibiotics and recurrent abscesses like this. I certainly don't know how to treat a situation like this, but I would very strongly recommend a second opinion. Maybe a referral to an infectious disease specialist would be in order. I feel like your treatment plan is not optimal or even working that well for you. I really hope they are able to find something for you that will work better. Good luck.

Welcome to the forum.

 

[Cookie]

Hi Jobell,

I have been in the same exact situation. I could not stop taking the antibiotics. I would go two weeks on and two weeks off, but I did not think that was an acceptable long term solution. Cipro has been shown to cause damage to ligaments and long-term use of Flagyl can result in periferal neuropathy (nerve damage). If you feel tingling in your hands and feet, you should stop taking flagyl immediately. Where is your fistula/abscess located? I had a complex rectovaginal fistula (complex meaning it branched off which is where the abscess would form). Ultimately, I had an advancement flap surgery to close my fistula off and have not had any problems with abscess since. You may want to look at surgical options. There are others on here who have used antibiotics long term however.

 

[Silvermoon]

I have only been on antibiotics for about two years, with doctors (and myself) thinking the same things as you - go on imunosuppressants and the abscesses appear to flare up again. Recently I was referred to 'the Guru' of CD in Alberta (been practicing over 60 years and is going to retire this spring) who started treating me with BOTH, imunosuppresants and antibiotics.

He went back to the basics of sulfasalazine and pentasa (which had quit working for me YEARS ago), also added some Imuran, and still maintained the antiobiotics - just trying to find the balance that would make things heal instead of getting worse.

The other thing I had done (earlier in the year, which was supposed o help in the first place - and maybe did a BIT) is a colostomy - with the theory of diverting the abcess causing stool and letting the bottom heal and rest a bit. It had felt a bit better, but in my case medication had to be added to the mixture to aid the healing of the CD and such.

The ultimate for me (really kicked things into fast heal mode) is the addition of 20mg of prednisone a day. It seems this might not be an option for you, but is it possible to use one of the other corticosteroids, like budesonide, that is supposed to be less harmful to bone density?

Just a few thoughts - I wish I had more answers, cause I kinda understand where you are coming from - long term anitbiotics really aren't the best way to live. Of course, if your doctor feels they really are "the lesser of the evils", then it may have to be so

Sending healing cyber hugs from The Moon
:moon:

 

[Jobell]

Thanks for the input. It is so confusing! i take low doses (only one pill a day, 250 mg and 500 mg), and i have been ok for so long, that i felt lucky not to have to deal with other, more 'complex' meds. As long as i take the antibiotics I don't seem to have symptoms. I think the ongoing diarrhea (why can i NEVER get the spelling right on that word!) is a result of the surgery, since they removed a 'valve' that used to hold back the contents of the bowel or something. i don't think it is disease related.
I just worry maybe my body is deteriorating internally.
ugh, this disease has no-clear-cut answers, does it? the other meds you mentioned also have side-effects, no?
I also think i am a 'bad' patient. i ignore my disease unless i am in emerg.... i can go years without returning to my GI. I haven't done colonscopy in years - I am so bad. like a big baby.

 

[DustyKat]

Oh, so you have a resection. Have you ever been prescribed Questran? It is a powder that absorbs bile salts. Some people also take it in a tablet form called Welchol. It can be very effective for those that have diarrhoea following resection of the terminal ileum.

If your abscesses keep recurring it may mean you have a fistula. Was that a complication that led to your resection?

Dusty.

 

[Crohn's 35]

:welcome: Jobell, and fellow Canadian. I read this and thought someone stole my orignal post 3 years ago :lol:. I have been on Flagyl mostly for over 7 years and Cipro to change about. I was a complexed Crohnie right from the get go. Have had two resections and my first was good for 7 years, the second one... well lets just say since 2003 after that surgery I have never been in remission. I know the sides effects of Antibiotics but... I have had this 20 years or so and if I go off for a few days it comes back and harder to get rid of. I have to switch about so my body can't reject it. I have NO choice been on all the available drugs and Remicade was disastorous for me. Humira peters out and tried Methotrexate twice. NO go. I react to everything and I really dont want a 3rd resection as I have not much Ileum left.


We have a wonderful bowel and cancer of the bowel surgeon here, so if I have to,no one else will touch me. I can answer most of your questions, and yes it sucks but what choice do I have. Doctors and I both hate Pred and isnt good long term.

Hope you are stable for the holidays. :hang:

 

[Jobell]

DustyKat, i did use questran for a while. I do find that i can sometimes control the looseness of my stomache depending on diet. If i cut out white flour and sugar, and eat healthy, and don't eat too many raw fruit and vegi etc. i can actually sometimes have a few normal days. the questran didn't work too well for me, but i can't even remember why, it was so long ago.
i had a resection, and about a year later discovered the fistula/abscess. i never even got a definite location, just know it is 'down there' i guess somewhere between rectum/vagina and occurs with 2 small bumps which disappear if i use the antibiotics. the few times i tried to stop antibiotics, the bumps re-appeared within 2 weeks, and got so bad i landed in emerg to open and drain them. they sent me to a surgeon, but by then i had been on the antibiotics and she said she 'couldn't really see the route' the fistula had taken, but she could do exploratory surgery and possibly find a way to thread something thru to keep it open so it won't build up an abscess again, but no guarantees. it sounded so 'iffy' i felt why should i bother, if i am feeling ok and if she can't see it clearly anyway.
now i wonder if this is a good route, if this is my only choice, if i am doing a smart or stupid thing.
Pen, i am so glad to hear i am not the only one with this strange treatment! i have been feeling like a bit of a freak. I am thankful i don't have worse symptoms or terrible flareups. Maybe i should be happy, not worried!
after reading this site, i am TERRIFIED! i was so naive, had no idea the disease is so awful. i guess i have been fortunate in a way.
my doc (who is one of the top IBD researchers in canada) is very relaxed, he takes the attitude that if something works for me, i shouldn't mess around with it. he has lots of patients on long-term antibiotics with no negative results (?)....
anyway, i am trying to gear up the courage to go in and do a colonoscopy.