Antibiotics advice

I was having a similar problem,and the G.I said the next step would be 6 MP with prednisone. The step above that would be an anti-TNF, like Remicaid,or Humira.
By accident,I tried Augmentin for a mild ear infection,and that cleared up the severe pouchitis I had for the last 6 months.

It's doubtful an infectious disease specialist will understand the unique issues of pouchitis. A GOOD gastroenterologist would be more experienced with treating pouchitis.

Since pouchitis is not an infectious disease, in most cases, an infectious disease specialist may not be helpful.

That said, there are reasons it makes sense to rule out these rare causes of pouchitis (such as CMV or fungal infections, which would not be helped by any antibiotics). In those cases, you need targeted antivirals or antifungals.

Sometimes looking at things from another perspective brings new approaches to your problem.

Jan

You don't say why you can't stay on the antibiotics that work. Are there specific toxicities of concern, or just a doctor that's not accustomed to long-term antibiotic therapy.

Folks with antibiotic-dependent pouchitis have to stay on antibiotics to stay reasonably healthy. It's not ideal, but as long as you avoid serious side effects it's much better than pouchitis, IMO. When one of these become ineffective, it may still work in combination. For example, Cipro stopped working for me, and Flagyl never worked, but the combination is working very well for me at the moment.

thanks for replies.
I am thinking of 6mp yes

What confuses me is the antibiotics im on now..they work..but i have no idea of the side effects..how long can i stay on Alinia or levaquin or clarithromycyn? can these be used as an on going treatment?..as soon as i stop ...i flare up. Do these antibiotics cause liver damage or anything ?

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Do these antibiotics cause liver damage or anything ?

I have been on antibiotics to treat pouchitis for 20 years. I asked this very same question to my GI back in the 1990s. His response: "you are the Guinea Pig." My liver chemistries seem to test normal all these years.

The biologics are considered a "last line of treatment" if antibiotics fail. They are more dangerous to use, long term, than antibiotics, especially as one gets older. They shut down your immune system and make you vulnerable to other, opportunistic infections. Someone also mentioned an increase risk of certain cancers. By the way, I was put on Imuran (predecessor to 6MP) in the 1990s to treat my UC at the very end. My liver chemistries went haywire, and I was immediately taken off the drug after less than a month. They test your blood every week with Imuran because of concern about what it can do to your liver.

I would respectfully submit to you that going to biologics while antibiotics still work is not a logical course of action. All my medical experts have told me biologics are the LAST LINE OF TREATMENT. That means you go there when nothing else works, and not before. Doing otherwise, you would tell me that my two primary GIs in treating my pouchitis the last 20 years don't know what they are talking about, and I feel that they do. They are/have been treating many patients with J Pouch issues. My current GI worked with Dr. Shen at Cleveland Clinic.

Im confused..my last dr was concerned that i was taking Clarithromycn for 14 days and she bent over backkwards to add an extra week on them...i do well on that drug...not sure how i can take it for the rest of my life..

other option is to have this j pouch removed and reconstruct another one...but ive been ducking this because there is a chance the intestines wont reach this time. The ostomy bag route for me is not an option...i will become suicidal.

You can't stay on one antibiotic forever. You need to rotate. Doctors generally do not like seeing patients take antibiotics long term, but some have no choice (unless you prefer having a permanent ileostomy). My GI has some other patients on long term antibiotics. He would prefer that we be able to take VSL#3 DS, but it does not work, so we have no choice.

It would be wonderful if we have a choice, other than biologics, but we do not. The only other thing you can do to help manage the illness is to implement dietary changes, cutting out carbs and sugars that fuel the bacterial overgrowth that is at the root of pouchitis. This is likely to help in managing the illness but is unlikely, in and of itself, to rid you of pouchitis if it is chronic and refractory.

ok thank u.. i would have to think about taking antibiotics forever..cant have alchohol on them without getting sick or risk of pancreatitis..i think remicade will be the option i go with..i would rather risk cancer than have liver damage and baldness from 6mp..

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cant have alchohol on them without getting sick or risk of pancreatitis..

It's not really true, unless you are an alcoholic to begin with. I have never had pancreatitis or any liver chemistry issues. I drink occasionally/moderately. I would not go with biologics over antibiotics if they are working. You need to speak to your doctor about these issues in more detail, or speak to one who has more experience treating pouchitis patients.

Why do you think remicade is safer for your liver than antibiotics???????? It is not. Remicade adverse effects that are possible:

serious and sometimes fatal blood disorders
serious infections
lymphoma and solid tissue cancers
reports of serious liver injury
reactivation of hepatitis B
reactivation of tuberculosis
lethal hepatosplenic T-cell lymphoma (generally only when combined with 6-mercaptopurine)
drug-induced lupus
demyelinating central nervous system disorders
psoriasis and psoriasiform skin lesions
new-onset vitiligo

Each antibiotic is different, and you will confuse yourself if you lump them together. From what I've read, there are no known interactions between alcohol and clarithromycin. Flagyl, on the other hand, can make people who drink alcohol while on it very sick. If you have found antibiotics that make you feel well it seems completely inappropriate to be talking about pouch replacement. Maybe you need a doctor who knows more about pouchitis, or is willing to learn?

ok thanks for the info..

I will ask my dr if i can take levaquin for a while..switch to clarithromycyn, augmentum and alinia..they all work...i guess i will live on them until i decide to take the risk on another j pouch surgery..which is an idea

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Flagyl, on the other hand, can make people who drink alcohol while on it very sick.

There is a warning against taking flagyl with alcohol, but I found that if the alcohol was consumed between the dosages, I had no problem at all. I actually got bombed one afternoon, at the Montreal Jazz Festival, at a time when I was taking flagyl early morning and late at night. I am not suggesting that anyone repeat this behavior, but the point is the sickness that is warned about is not automatic, and I never experienced it while taking flagyl.

I should add that I seem to be strangely immune to the side effects of antibiotics, with the exception of having developed a few yeast infections while on them, which I have since learned how to avoid.

yes same here..ive never had a side effect with antibiotics ..only yeast infections.

im a tournament racquetball player and found that cipro and flagyl throw off my reflexes and dropp my athletic ability ..make me weak.
all the others ive taken are fine

Have you tried Probiotics for your pouchitis?
I'm sure you have but just a thought. VSL #3 prescription strength seems to be highly recommended, and I would try more Greek yogurt and maybe even giving up carbs if that is contributing to pouchitis before going on Remicade. I was on Remicade 5 years trying to avoid this surgery and 10 years on Azathioprine and have had over 35 skin cancers, most likely due to weakened immune system from both of those drugs. My dermatologist wanted me off it, afraid one of them would spread before we caught it. I now see derm every 3 months and continue with more aggressive and painful treatments to keep skin cancers at bay. Good luck! Hope you and the experts get it figured out soon!
LJZ

I too have been at my wits end with pouchitis. See my signature, I've been on everything. This last episode was 10 months, nothing was working. I saw my surgeon to have my pouch removed and he told he to try augmentum. In one day I was totally better. I took it for 3 weeks but got a fungal infection so I switched back to Xifaxan which had stopped working but now it's working again. I'm afraid not be be on anything. I might not even need it but don't want to take a chance. I stopped everything else. Remicade made me extremely ill and it takes 3 months go get out of your system.

thanks! yes i take 2 vsl#3 a day..i just had surgery for skin cancer as well