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17 replies

Not sure if Humira is the answer

T techwrenchMember
I have been fighting antibiotic resistant pouchitis for 6 months now. Six weeks of cipro didn't work. Taking budesonide since early April (9mg/day).It has helped,but only moderately.I didn't care for the slow pace,and the difficulty scheduling with my local GI,so I went to the big city hospital.
In July, I started going to the University of Colorado Hospital,where they added xifaxin and cortisone supositories to the budesonide. Again not much of a change. August 7th I had another pouchoscopy,and as soon as the scope was inserted,the doctor said ,"oh yea,we need to change your medication".My pouch was very inflamed and red.
The next day I met with my doctors,and they advised I go on 6mp and prednisone. The prednisone would be 40 mg for 4 to 6 weeks to jump start the 6mp.
I took prednisone for about 3 years when I had UC,and I was difficult to be around. It made me like Gunny the Drill Sargent on crack!
I said no way to prednisone,and then was given the choice of an anti TNF: Remicaid or Humira. I chose Humira. While waiting to start the Humira,I needed to have what I thought was an ear infection cleared up.On the 13th I started taking some left over Augmentin,and stopped the xifaxin. Went to the doctor 2 days later to have my ear checked,and was told no sign of ear or sinus infection.Don't know what it was.
However, the day after starting the Augmentin, my pouchitis was immediately better ! It's been 11 days now and my pouch feels better than it has in 6 months. When I told this to my doctor,they replied that it's unlikely antibiotics alone will cure the pouchitis,and I should still go on the Humira.
After reading well into the wee hours about the Humira horror stories,I am a little hesitant,and my inner voice is saying maybe I should try to rotate antibiotics,or do something else. Any recommendations what antibiotic I should try next ? I'm open to experiment.

My doctors are very intelligent, yet quite young,and have only been practicing for 3 and 4 years respectively. Also,they've only been treating me for less than 2 months.
I'm feeling a little apprehensive about these things right now,and trying to figure out what direction to go.
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ElmerFuddElmerFuddMember
Surprised your docs are so definitive on cause and cure for your pouchitis. The gut makeup of everyone is different though a recent study showed that it remains relatively consistent. And yes, antibiotics alone were the standard treatment for pouchitis for years. If it were me, I would:

1. Request stool culture for known culprits such as C-Diff (people here with j-pouches have acquired C-Diff before, and if your doc says it's impossible without a colon you should go elsewhere)

2. Try an antibiotic rotation of 3-4 different antibiotics. Augmentin is not usually in such rotations but they all seem to help. Usually Xifaxin, Cipro, and Flagyl. Some people find success with old school antibiotics too

3. I posted on the Pouchitis forum that PPI's have been proven successful in preventing pouchitis via changes to pouch PH and the bacterial composition I the pouch. You might try an anti-inflammatory like sulfasalazine too.

4. If all else fails, then move fwd with an anti-TNF

Steve
T techwrenchMember
I forgot to mention that I was tested for C Diff. back in March,and again had extensive stool labs in July at the new GI's clinic. Everything was negative,and looked OK.
I also take a probiotic called Ultimate Flora between antibiotic doses. Tried VSL#3 back in March,and all it did for me was burn on the way out.
The augmentin response was just by accident.
After 20 years of dealing with digestive auto-immune problems,(UC, PSC )I just have a hard time believing everything the doctor says,because they have been wrong as many times as they have been right.
Last edited by techwrench
lholdemlholdemMember
I don't know enough about pouchitis and why your docs think you need Humira in addition to antibiotics... Maybe because they want to get the inflammation down? If you're feeling better on the augmentin maybe they can do another scope it see how you're looking? Personally I have to agree with you about prednisone- that stuff is like making pact with the devil to feel better. The side effects show up quicker and worse every time I take it. As for Humira, I had a measure of success taking it (pre-surgery), and while it was far from a horror story, I always seemed to have a little extra infection I was fighting off. If you can keep your inflammation under control without it I'd do that.
Scott FScott FMember
Augmentin is definitely a drug that is used for pouchitis, although not what's usually tried first. Folks with pouchitis commonly respond to some antibiotics and not others. Your nearly-immediate response to Augmentin is typical for someone with pouchitis who starts a drug that actually works for them. If it were my body I'd push strongly to continue on the Augmentin for a bit, and see if the relief persists for you. If Augmentin genuinely solves your problem then I'd be very reluctant to add Humira. How would you even know if it was helping?

The doctor's skepticism is surprising to me. What's it based on?
T techwrenchMember
Scott, you make a good point about knowing if Humira was helping after being on Augmentin.
I do feel like staying on the Augmentin is the best course right now,the question is for how much longer ? It's almost been 2 weeks. I would like to experiment further,but am not sure if I should rotate to a different antibiotic in the same classification,or a different classification of antibiotic.
After reading about the Stanford Vancomyacin study, I would like to give that a try since it could also be beneficial for my PSC. Back in '95 when I was first diagnosed with UC, Vancomyacin worked very well for the first three months. Then things gradually went down hill.

My pouch was very red and inflamed during the pouchoscopy,so perhaps the GI doctors are trained that serious inflammation can not possibly heal with antibiotics alone ? That is a question I'll have to ask them.

Steve, interesting about the sulfasalazine. Thanks,I'll keep that in mind also.
Last edited by techwrench
AllyKatAllyKatMember
I was at my whits end dealing with pouchitis and if u see from my signature I've been on everything. I went to see my surgeon for pouch removal and he recommended Augmentum. A 10 dollar drug got me into remission. But it did give me a nasty yeast infection so I switched back to Xifaxan which in the past worked, stopped working but it seems the augmentum kicked it back to working. Could not be happier right now.
J JJAMember
If Augmentin worked, I would ask to see if you could rotate that with something else to preserve its effectiveness as long as possible.

When rotating antibiotics didn't work for me, we added budesonide. When I could eventually never get weaned off that, I was offered a biologic in combination with Immuran. Instead I chose just the Immuran. Still rotating Levoquin and Xifaxin, still on 1 or 2 Bedesonides/day, and taking Immuran and been in remission for 1.5 year. I like that I still have biologics in my back pocket if/when the current regimin stops working. Once you start a biologic, you are supposed to continue it or it can lose it's effectiveness, so I wouldn't want to start one unless/until all other options were tried and failed.
T techwrenchMember
I've been on the Augmentin three and a half weeks now and my pouch has never felt better !! I am in the final week of tapering off Budesonide as well. The plan with my G.I. is to continue Augmentin for another week and a half. Then another stool sample will be tested for ( I forget the test name ) white blood cells that leak or slough into the g,i tract. If the number is below the acceptable range of 100,then we won't go with Humira.
I'm not sure what the plan will be then,nor do I think the G.I. really knows as well. My G.I. team is quite young,so I think this is a test/learning experience for them as well.

We agreed that Humira is a "safety net" that we can always fall back to in the future if need be.

The real question now as you addressed is, what kind of antibiotic rotation to do next,and for how long. Like Cipro,I don't want Augmentin to become ineffective as well.
Last edited by techwrench
J JJAMember
Antibiotics to consider rotating might include augmentin, rifaxin/xifaxin, levoquin, cipro, flagyl, and there may be others. Flagyl and cipro didn't work for me, so I use Levoquin and Xifaxin (it is supposed to be non-systemic, so I like that I am giving the rest of my body a little holiday every 2 weeks).
D dltMember
I have been on Augmentin for about 6 weeks straight .I was on cipro before that. My question is should I just stop the Augmentin and go back to Cipro after a certain period of time. I do not want the Augmentin(which has worked great for my chronic Pouchitis ) to lose its effectiveness. I would love to just pop a Aug. pill daily forever but realize that's a bad idea. It seems if I miss a pill I go back to square one.
Any and all suggestions welcome
CTBarristerCTBarristerMember
quote:
My question is should I just stop the Augmentin and go back to Cipro after a certain period of time.


Yes. I rotate every several weeks between cipro and flagyl, augmentin and xifaxin. If you stay on any one antibiotic too long it will lose its effectiveness and, in the case of the broad spectrum antibiotics like cipro, will also kill enough bacteria in your skin that you will be very prone to viral and fungal infections (yeast infections and warts). This is why using xifaxin in the rotation is very beneficial. It gives your system a break and a chance to regenerate bacteria in your skin as xifaxin is not really systemically absorbed.

If you are diligent in rotating, you can use antibiotics for a long time effectively. In my case it's been 20 years.
MysticobraMysticobraMember
Just a comment.
I have been on 3 TNF 'S.
REMICADE.
HUMIRA.
And one other and never had any side effects what's ever. All drugs have horrible potential side effects. But if it works it's a miracle.
And REMICADE was a miracle at the time.
They took me off it cause I had to have surgery and then no tnf worked. But I was sick as a dog when I tried remicade.
It worked like a charm but I had my colon then.
Richard.

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