Hi I am new to the k-pouch corner but not new to the J-pouch site. I had a J that due to cancerous tumor in the stump I had converted to a K (by Fazio - Nov '05). I am pretty sure he actually re-used much of the J in the conversion! Over the year of having the k-pouch I got my frequency down to twice a day. It has been working like a champ. I have the same limitations that everyone else seems to be having and some funny stories about using public restrooms. I was corresponding with some of you and I apologize for falling out of touch.

This past fall I had a single tumor discovered in my liver which I had resectioned this past November at Sloan. I started chemo late Dec and have completed two cycles.

In the week following each of my two infusions I developed a kind of pouchitis along with bad diarrhea which yes is a different experience with a k-pouch. I have also had pretty bad cramping and dehydration. I was intubating every 4 hours and getting tired of it. My GI put me on flagyl to reduce the inflammation which is working slowly over a 3-4 day period. I am seeing the GI tomorrow for a possible scoping.

I am quite concerned about the health of the pouch of the next 10 chemo sessions getting inflamed and hitting it back with flagyl... Has anyone had an experience like this?

Regards, Peter

my oh my! I've found someone else! finally!!!

hehehehe, peter, you can search through most my posts throughout the past couple months here.
i'll be going in for my last round of chemo tomorrow (i had 6 with my kpouch, 6 before i had the k)

It's definitely been a trying experience. And i started getting chemo about 2 months after my surgery, so i never really got to know my pouch before it started getting battered by chemo.

BUT, i just got scoped a few days ago (having five rounds of chemo in me already) and i must say, the inside of the pouch looked really good. nice healthy pink tissue. nothing really too suspicious going on in there.

But you can read about the problems i've been having (which yes, involved diarrhea, massive cramping, bad gas pains, and alot of difficulty getting the catheter to actually go in, not to mention feeling i have to empty every couple hours)

I can't speak with ultimate authority, but from what i've experienced, the inflammation does go down a bit a few days after chemo ends, but the longer you're on it (i.e. the more sessions you have) the longer it takes for things to calm down a bit.
Right now i'm planning on powering through this last session, and i don't expect things to calm down in my system til at LEAST 3 weeks, and the whole of effects to start dying off a few months after it's all over.

Good luck, just know you got a kindred spirit in me!
B

Rebecca,

Thanks for your reply. Sorry for not reponding sooner, but I had a rough couple of weeks - I got an upper Gi xray and then got scoped. Every looked clear althought the biopsy came back with a slight possibility of pouchitis. I had been given flagyl to calm down the inflamation and nulev to stop the cramping which both worked well although I lost too much weight and so I had to wait a week to start cycle three. I am on that now and get unhooked tomorrow - so far so good.

i completely understand the rough weeks.

i just came off of a particularly annoying week of not beign able to get my last chemo b/c my white blood cell count was too low (was like 1.0...should be at least 3.0 for treatment, and a normal healthy immune system shoudl be more like 11-14). so they gave me a shot of neuprogen and told me to come back the next day. next day counts were still too low, gave me another shot told me to come back again the next day and blah blah blah.
BUT i did finally (three days later) got the last treatment.
and now i'm just waiting (patiently) for the side effects to fade away. though i understand it can take a long long time for it to fully go away.

keep with it, i'm sure it'll be over soon (and feel free to check in on my blog, i've gone on rants about hating chemo)

My pouchitis problems continue. I've used Flagyl with marginal results and then used cipro which cleared the pouchitis, but the last chemo treatment kicked up the pouchitis again even while still on the cipro. I am doubled over in pain at moments during the day and night.

Does anyone know of other antibiotics that I can add to my arsenal to fight pouchitis. I am about to pick up VSL3 probiotics, but that seems like a mild approach to calming down my condition.

Thanks, Peter

If it is chemo related, you may need something like hydrocortisone enemas or prednisone to reduce the inflammation. Or maybe mesalamine enemas. This may not be due to bacterial overgrowth or imbalance. But, if you want to try, some folks have gotten results with tetracycline, cephalosporins, levaquin, amoxicillin, and any number of other antibiotics. You can also try Pepto Bismol.

Jan

Thanks Jan! You are a remarkable wealth of information! I'm forwarding this to my GI, somehow I still think I'll get a bill. ;-)

Thanks again, Peter

Peter, I would think that your oncologist would be the one to treat side effects of your chemo. He'd probably be more on top of the mechanisms of injury with your particular treatment and how to treat it.

Jan

Jan, A week past treatment 4 and the cramping/diarrhea returned. My GI perscribed a decreasing dose 6 day regimen of prednisone. The prednisone worked for 2 days and then the cramping returned worse then ever landing me in the hospital for 3 days of IV drip + prednisone + flagyl. A ct scan revealed thickening of the pouch wall plus about 5cm of small bowel leading to the pouch.

After much dicussion I still have this problem to solve: My Oncolgist wants to drop the Oxaliplatin in the chemo (Folfox 6) to stop this vicious cycle?, but I want to be sure this is the component that starting one or more of the following:
1. diarrhea
2. cramping
3. dehydration
4. pouchitis

I am trying to determine: does the chemo cause the diarrhea 1st which leads to dehydration that aggrevates pouchitis and cramping?
or
Does the chemo cause pouchitis that shuts down the pouch's ability to absorb water, giving the effect of diarrhea leading to dehydration and cramping.
or am I missing the boat altogether...??