Hi Fulton,
First off, so sorry that you reacated so adversly to the antibiotics...next
1. You don't need to irrigate the pouch every single time that you empty it out, only those times that you feel the need (thick stool, blockages of fiberous materials etc) but if you find that it helps you can irrigate once a day (like in the mornings to clean it all out for the day).
2. I drink a pot of coffee every morning without any problems (it helps me to clear out my pouch...they started me doing it in the hospital when they created my kpouch 30+yrs ago)...as for soda, if and when I feel like it...doesn't have any adverse effects on me.
3. Sounds like you are inserting your cath just fine....I push it past the valve + about an inch +/- and it is fine. I do need to twist/turn it sometimes to get all of the stool/gas out but that is just my pouch.
4. I tend to drain it regularly and also whenever it feels full, if I am going out and don't want to have to make a pitstop, if I have eaten too much fiber (fruits and veggies) or had milk products that produce too much gas.
5. Why do you use immodium? A k pouch is supposed to stay liquidy so immodium is anti-intuitive to me unless I am very sick (stomach flu/virus/food poisioning...), if you want to use something to control the gas, try beano or any other anti-gas type digestive enzyme or intubate more often to reduce the gas (milk products cause a lot of gas, so you may wish to avoid them).
As for the antibiotics and reactions...yes, I have had some but not systemactically...I get joint/ligament pains like tendonitis, swelling in my joints etc...occasionally nausea, headaches or vomitting but nothing else...you may try to change the antibiotic or stick to probiotics when possible.
Hope that this helps.
Sharon

I had a bad reaction when I took cypro. I usually have no problem with medications, but that one did not sit with me well. My GI had me use doxycycline when I had a case of pouchitis and it worked reasonably wellfor me. Best of luck

Thanks for the replies.
I think my main concern is what causes pouchitis and I wonder if it's something I'm doing. As I waited in the ER all I could think about was the time my UC was out of control and they tried for 2 weeks to save my colon. The horrible pain I went through before they removed it and dealing with life after that.

I've been able to stop pouchitis before, but this time was different. That and my reaction to the antibiotics really scared me. I don't have insurance and if for some reason I need another surgery I'm not sure what I will do.

I will ask about different antibiotics and hopefully if I go through this again it will go better. Thanks again!!

Richard

Xifacin is a safe long term antibiotic that might be an option. Are you sure it is pouchitis? Been diagnosed by scope?

Yes, they scoped me in the hospital and it was pouchitis. I do not have crohns and I was glad to hear that. I'm just going through a bad time right now, I was taking benzo's for over 15 years and the side effects were getting bad. I stopped CT and the withdrawal is pretty bad. My CNS is overly sensitive to everything and the stress of the pouchitis was too much to bear.

I've read online that Cipro can increase and prolong benzo WD as it effects your CNS also and from what I went through, once was enough. The 10 days on the antibiotics was enough for me to see a psych doctor as the depression was unbearable. All of that really clouded my thinking and all I wanted was the K pouch gone.

I'm sure they are many who don't have much trouble with their K pouch, but I had my ileostomy for 10 years and it never gave me any problems. I could eat whatever I wanted (within reason) and the time in the bathroom was much less. I am hoping to get medical insurance within the next year or so and will consider having the K pouch removed.

Until then I have to make due, I think Sharon mentioned she drinks prune juice to clean out her pouch in the mornings. I will look into that to see if it works at night, as it is I am up until 2am so I can drain my pouch enough so I can sleep 8 hours or so.

I need to come up with ways to "move things" when I want and if I could clean out the pouch earlier in the evening that would help. Right now I plan my day and night around when my pouch wants to move things.

Fulton,
You can take prune juice at any time of the day or night...in the very begining I took it 3xs a day with meals and things just booted it out of my pouch at warp speed...if you combine it with coffee it becomes k pouch draino!...our pouches a conceived to not hold fecal matter for too long otherwise we end up with all sorts of problems...so try the prune juice at the most convienent time of day for you...it takes about 3-6hrs to run through you depending on what is inside of you and your pouch and what isn't (in the morning on an empty stomach it takes 2hrs, after dinner it takes longer)...good luck.
Sharon