Just putting this out there. Reading on the site much like UC they're not sure the cuases for poucitis. BUT suspect one reason may be the pouch not fully emptying leaving bacteria to cultivate. Well I say bull as it seems to me even when we were all normal UC or those without, do you really EVER fully evacuate your bowels?

I mean come on if you're eat regularly isn't there ALWAYS something going through your system? Also isn't pretty much anything going through your bowels bacteria laden after all isn't WASTE bad in general and isn't your intestines created for just such bacteria?

But lets just say for kicks they are correct the bag isn't empying properly umm isn't that a DESIGN PROBLEM then? Seems to me then the doctors would be saying hmm well maybe if we shift it to over here or lay it sideways here or attatch it there, right?

Or maybe its an enzyme or chemical the colon makes that is now missing, seems research would find OH chemical XYZ is why they get pouchitis so we give the patient this pill to counter it. OR as I keep hearing probiotics but that doesn't seem to do the trick. You'd think after all this time they'd have figured somthing out wouldn't you?

I always wonder if they EVER want to cure anything I mean there's no money in it is there. I used to heart year after year from my doctors officve "oh we are constantly looking into new TREATMENTS" and I'd say screw treatments I want a CURE!! Lets face it 4oo dollars a month for asacol (or whatever) vs say even a one time 20,000 doloar IV cure which do you think the drug companies choose.

Think about it I had UC for over 20 years taking pills think of the money I spent vs if they'd have had a treatment that cured it. Same with this pouchitis a cure vs anti-biotics hmm I can bet which they chose. Also this is somethign probably I should have asked the doctor but you know how it is when you go to the doctor nevr fails I ALWAYS think of questions after I've left. But in the procedure it's listed as "we remove the colon and from the anus about 6 to 8 inchs is left to attach the small intestine to". Well isn't that 8 inchs infected colon?

My UC flares were usually always within the first 4 inchs inside my rectum so couldn't THAT be the infection we are feeling and not something within the pouch its self? How do they get around the 6 to 8 inches without it being infected anymore? So basicly we still hava tiny amount of UC still with us. Plus like now I have pain and if it were the pouch as suggested wouldn't the pain be more in the abdomain where the pouch is?

I don't know about you but my pain originates right around the anus area not higher up where you'd think it should be leaning me to my above thought that the 6 to 8 inches of (former) colon is still UC infected.

Your thoughts?

No thoughts on what I said? I see a lot of views but no opinions huh? Hmm interesting.

Generally, they leave just a couple centimeters (not 6-8 inches) of rectal cuff to attach the pouch to. They didn't used to, but they found that people had better BM control when they left it. Yes, those couple of centimeters can still get UC inflamation, which is refered to as "cuffitis". A good doctor, using diagnostics, should be able to determine if your issues are more cuffitis related (UC inflamation in the cuff) vs pouchitis, and the treatments are often different.

And yes-you are right about researching treatments vs. cures. The pharmacuutical industry (whom I have a love-hate relationship with-I mean, drug interventions have probably saved my life, yet at the same time, I hate the Rx industries practices) is a corprate-driven, publically-traded, beholden to shareholders seeking reutrn on their investments industry. They often use publically funded research to support their own industry funded research, and their objective is to develop treatments that will make them the most money-this means they exploit all kinds of strategies to spend the least money possible to make drugs they can sell to the most number of people as possible. So it is no surprise that their is not a lot of incentive for the Rx industry to look for a "cure" for pouchitis-something that only a percentage of j pouchers (already a small #) have to deal with, many of whom can be pretty easily treated with existing antibiotics (aka money in the bank for the Rx industry). Research for a "cure" would need to be funded by those who would benefit from it-aka insurance companies, but their profit margins are much lower than the Rx industry (more like 3-5% in recent years), and they are not generally in the business of research, as that is not really where their expertise lies. Now if we had a single payer health system, there might be a motivation to fund research that actually helps people to be healthier, with the only "profit" expected to come from it being the money saved on health care costs, but sadly, that is probably a long ways off.

Interesting observations. My inflammation has always been mostly in the rectal area, even with UC. And it infuriates me when I go to fill prescriptions for Canasa and Cortifoam suppositories. They are off-the-chart expensive, but antibiotics are affordable. Seems someone or something doesn't want us getting better....

UC is too rare for them to care. Any kind of pouch related infection is more rare. $$ drive the whole machine. Asacol's patent has been up and noone has developed a generic form of it because it's not a big enough market for them to bother with.

There is a pouch procedure that is more rare, they don't use that 1-2 cm of colon, forget it's name. I didn't know about the 2 different kinds until after my takedown. If I'd known......

I hope you are feeling better

i agree with you when u go see these surgeons its like they are to good to listen to ur opinion and then all they want to do is prescribe meds or do surgery then we have no other choice then to do what they say because we have to get better we have bills to pay and we r in to much pain its a cruel world. man it infuriates me it would be nice to get some drs on the cure side and not just quick fix.

There are a lot of docs out there that don't listen, but also a lot who do. I was fortunate to find a surgeon who wants to collaborate with me on my long term post surgery care because he says he understands the pouch and most gastroenterologists don't. He always gets me right in when I call with an issue, calls me at home, has called around for me to find drugs in stock at local pharmacies, and works with me. He is fabulous. The day he retires, I will be happy for him but sad for me and his other patients. If you live in the Seattle area, his name is Stephen (sp?) Medwell he works out of the Polyclinic on Broadway and, I think, still does his surgeries out of Swedish Medical Center - one of the top rated hospitals here.