At my scope 2 weeks ago my surgeon found mild inflammation in a few spots and cuffitis. I was off augmentin for about 5 days at the time of the scope. The surgeon did not feel I needed to go back on the antibiotic and prescribed canasa suppositories.

It has been just over a week and I am in dire straights tonight with rectal bleeding,urgency and a totally raw behind. This has been really bad for the last three days. I cannot hold canasa suppositories in for more than 1/2 hour so this has become a waste and it is very painful to insert them.

I started the augmentin tonight and plan on calling the surgeon on Monday. My next conversation is going to be what is the likelihood that this pouchitis will ever clear (four months since takedown)and am I heading down the path of antibiotic dependence and eventual pouch removal.

Anyone have an experience like this that did improve over time?. I have been on Vsl3 for about 2 weeks and see no difference so far and also adopted a gluten free diet with no change either.

Any advice would be appreciated. I am desperate and scared about my pouch future.....

Jan Dollar told me once that it takes a few months to tell how much probiotics is helping. Are you taking immodium and fiber? I think you are.

I would suggest smoothies and the brat diet. I've done that when I had problems before the hernia surgery. I went down to a soft diet and quit taking fiber and immodium, then when that didn't help I called the surgeon. That's when I found out about the hernia - I know that's not your problem. I just think going plain diet and gradually adding foods back in might help. I don't think I have had pouchitis yet....

I hope someone with pouchitis experience sees this and answers your question.

Take care

Try using cortafoam 2 times a day with the canassa 2 times a day and antibitoics. You might need to do this for a month and they slowly wean one by one and then use the canassa for maintance. Also, you need to use VSL#3D 4 packets a day and up your vitamin D levels

Thank you for the suggestions. I will try all. I have already upped the cortifoam today and feel a bit better. I just wish I could retain the canasa longer as they are so expensive.

I am taking 3000 IU of D and started L-glutamine today. I wanted to use all my vsl3 before getting the DS. Maybe I can just up my vsl3 to 4 packets a day until I get the double strength?

"My next conversation is going to be what is the likelihood that this pouchitis will ever clear (four months since takedown)and am I heading down the path of antibiotic dependence and eventual pouch removal."

kjeane, why do you feel that if you are antibiotic dependent that you are destined for pouch removal? if you respond well to the antibiotics and can rotate them, there are pouchers that sucessfully do this for years. i am antibiotic dependent, and my gi has said it would be very unlikely that i would have pouch failure anytime soon with the mild inflammation i have (like you) and how well i respond to antibiotics (also like you). i will probably be on them for the life of my pouch, but haven't ever worried about pouch removal. just my two cents.

kjeane, Regular VSL#3 is half the strength of DS - if that helps. I take 5,000 D, but tested low and had to take prescription strength for a while. I hope you day is going well.

CLZ,

My GI doc is pushing for me to get off antibiotics. My surgeon did not seem that concerned about long term use, but he was to in a rush to put me back on after he saw mild pouch inflammation in my scope. Five days later I was suffering miserably and started myself on the augmentin. I am just concerned as I thought chronic pouchitis occurred in a small minority of people and often it may lead to pouch removal and I am so early in this journey that the thought of chronic pouchitis is disheartening.

Thanks for the encouraging words.

Toughenough,
I am going to up my d levels to what you are taking. Thanks...

Kjeane,
I'm sorry you're having such a rough time. The antibiotics depending on what ones you're taking may have serious side effects long term if you're unlucky enough. Because they are antibiotics eventually your body will develop a resistance to them. Most drugs used to treat pouchitis are intended to treat the occasional episode but not for constant prolonged usage.

Be careful with cortifoam. I was given it while in the hospital a couple of weeks ago but my doctor was reluctant to prescribe it for regular usage and did not. First of all it is a steroid and from what I understand is that prolonged usage of cortifoam will eventually thin out your pouch to the point that there will be no option but to remove it.

What kinds of antibiotics have you been on? I know in my case, I would have problems with returning pouchitis/cuffitis while on one kind, only to have to clear up in a relatively peaceful way on another.

I think there used to be a thread around here somewhere with some advice and a great huge list of antibiotics used in treatment.

But even if it won't clear up, there's people who've cycled through antibiotics year after year and kept otherwise functional pouches.

So it's not necessarily over yet.

Brows,

So far I have only been on augmentin. Thank you for the response. My research last night showed the following which is not very encouraging to someone in my shoes:

The highest rate of jpouch failure occurs
in the first year following surgery.

Inflammation in the pouch occurs within the first few weeks and most patients in which pouchitis will be a problem have symptoms in the first year.

Chronic relapsing pouchitis occurs in about 5%
of patients and is defined as three or more episodes of pouchitis per year. Such patients are best treated with long term maintenance therapy; ciprofloxacin 250–500 mg bd.

I hope some of the success stories from others on this forum will apply to my situation and others who are also dealing with chronic pouchitis.

kjeane...one more thing to add...i realize you're concerned about being on the antibiotics long term. but it's probably better to start rotating them now instead of being on just the augmentin for too long. if you're on it for too long, it may start to stop working so well for you. cipro really is the magic drug for most of us, but i do like augmentin too. cipro has more potential long term side effects than augmentin does, but rotating them should help with that.

everyone has their own opinion on anitbiotics, but i believe that if we have these drugs out there that can take away all our symptoms, why continue suffering? i figure i can deal with alternative meds years down the road if and when the antibiotics no longer work for me.

best of luck to you :-)

CLZ,

Already sent an email to my surgeon with your exact response about whether I should rotate antibiotics now or not. I still marvel at how much better I feel within a day after starting augmentin. I will post his response after I receive it. Thanks again for the feedback.

Hi - I had take down two years ago this month and have had pouchitis pretty much ever since. Long story short, I was not able to tolerate Cipro or Flagyl. I had been on 6-mp for 20 some years to successfully treat my UC. I theorized that one reason I had pouchitis could be a "rebound" effect from abruptly stopping the drug after pouch surgery. So six weeks ago I got back on it. Takes three months to take full effect, so I am also still on Augmentin. However, within 10 days of starting the drug the pouch started feeling better. The 6mp did produce a side effect of fatigue for about four weeks, but it is better now. Very little data on 6mp and pouchitis, but you might keep it in mind. I will report again once I get off the Augmentin in another six weeks. Also on VSl, one or two packets of DS a day, but not sure what effect it has. Overall, I can again eat almost anything. Still need an imodium or two a day to slow things down, but otherwise I actually sometimes forget, or a second or two, that I dont have my colon.

In case you haven't seen them, I dug up some old threads I remembered about.

http://j-pouch.org/eve/forums/...1921/m/171100823/p/1

http://j-pouch.org/eve/forums/...51071921/m/515108724

Best wishes.

Thank you for the responses. I greatly appreciate your input.