Hi, several newbies in the last year - how are you all doing???? Do you like your kpouch/bcir?

Last surgery June 15th and doing perfect, couldn't be any better.

Hi,

I'm a soon to be newbie! I just met with Dr. Launer this morning and I LOVED him. He says I'm a candidate and would like to do surgery in October. Now I just have to battle my HMO to get it approved...yikes.

Janice, I believe I've read before that you have an HMO, any tips on getting this approved. Did your GI write a letter and submit for you?

Any help would be greatly appreciated. I'm so excited to have this procedure and get on with my life after an almost 3 year battle. I know it will take work but I'm ready for it.

Thanks for all the info posted in this Korner, I'm sure I'll be on with more questions...

Hi Allison, oh so happy for you! Did Dr L's office advise you that they were going to handle the paperwork and approval process for your hmo? My kpouch surgeon colaborated with my GI dr and took care of it all. They'll need copies of records and etc.

Since there are no other kock pouch surgeons in the hmo network it should be approved as out of network. Did they approve the consult, too? Or did you pay privately?

Exciting..don't worry..it'll all work out.

Doing Good. Less than a year out from my last surgery and moving from sunny California to Alaska on Sunday to get give school another shot.

Pouch function is good and hope it stays that way for a long time! Time to stop just surviving and start living!

Allison - I have a CCP which is a hybrid cross between an HMO and a Prefered Provider plan. There were no K-pouch surgeons in network and I had both the surgeon and my GI write letters to the insurance company. When it was only approved at the "out of network" rate I appealed to my state and federal legislators (yes, all of them). I had a response from one state and one federal. A state complaint was filed on my behalf and after spending hours on the phone and computer, it was still determined that it would only be paid for at the higher rate (I will have to pay a minimum of $10,000 plus any costs that are "above the usual and customary charges"). This decision was made because the insurance co. decided I was a candidate for either a J-pouch or a permanent ileostomy, both of which were available in-network. Good luck with your case, but I would not wait a minute longer to start rallying the forces!

Thanks Janice. I had my colon, rectum, and anus removed with K-pouch made 5 weeks ago with Dr. Fazio. I was discharged from the hospital an amazing 5 days post-op! Unfortunately I ended up back in 4 days later in the ER with fever, low blood pressure, high heart rate, and SEVERE abdominal pain. After more tests than I could count and 5 days of IV antibiotics they declared me well and chalked it up to an infection of some sort (not perforated bowel or gall bladder - the usual suspects).

I have been intubating for a week now and that seems to be going ok - is it normal to have some blood in the output? I've had some a couple times and figured it was either the cath. scratching the back of the pouch or wearing pants that put some pressure on the pouch when I was sitting. I have found so many foods that I used to be able to eat and am supposed to be able to eat now, but cause tummy aches, lots of gas, or clogs. I eat very little meat (almost a vegetarian), but it ironically poses no problem. I have crossed pasta, rice, shrimp, onion dip, and bananas off my list along with bread (unless it is less than half a slice). I found I can puree my garden salad (tomatoes, cucumbers, peppers, mayo, and seasoning) and it is fine. I can do the same for melons, but will never try eating them normally again - even VERY well chewed! I'm so tired of applesauce and prune/apple/orange/grape juices that I cringe just pouring them. I have been able to return to my addiction of diet caffiene free Dr. Pepper though - yeah!!! But now I only drink two cans a day instead of 5. Every couple of days I try something else new, but usually with Beano tablets - just in case.

I can't wait until all of this seems "normal" and isn't wierd anymore. I didn't have any problems or symptoms prior to surgery since I have FAP and there aren't any symptoms other than polyps associated with it. Going from feeling great to feeling like a hostage to my guts is hard, but definitely better than cancer.

Wow, I sound kinda grouchy in this post - yeah, its dinnertime and my tummy is rumbly and irritated. Definitely time to hit the tums and find some chow.

The fact that you see some blood in your output is not necessarily a problem. Small amounts of red blood is fine. Probably the catheter scraping. As for food I'd still stick with a pretty bland diet and test foods out as you go along. Foods that give you trouble now could be fine in a few months or even a few years. Periodically try troublesome foods with foods that you know don't give you problems. This way you know for sure if that item is what causes the problem. I wouldn't try asparagus, peppers and broccoli in one sitting (this combo would ruin my day for sure).

I was only ill from colitis for 3 months or so before I had my colon removed so I kinda know how you feel. Will it ever feel "normal?" I don't know. Its a pretty unique thing we got going on and I know I still get pissed about the fact I have to crap through a tube. Other days I can see the brighter side. Unfortunately we will always have people with colons to remind us of what was. We can't "pretend" like those j-pouchers either .

I have had a jpouch for 19 yrs and all is going well with it however due to sever strictures or stenosis a fistula has reared it's ugly head. I've been diverted once already this year and will have to again. They want to try and do graciloplasty to fix it, however my doctor suggested the k-pouch as an alternative since it is very likely that I will eventually get another fistula due to the stricture problem. I'm trying to make a decision right now and would love to hear from anyone how they feel about their k-pouch, concerns, issues, food, etc. I have read online that there is a 25% failure rate on the valve which is a concern. For those that have had this a while is that true? Any information you can give is appreciated...thanks

Sue..no not a 25% valve failure rate. It's at 10% and in my opinion, there is no such 100% success rate anyway. I suggest reading through these posts and you'll find alot of success stories and minimul food restrictions -it's about learning to CHEW CHEW CHEW. Also, since you're in CA - Dr Launer and his team at scripps in La Jolla is worth setting up a consult with.

Nowayout - yes as Keith pointed out, as the cath is kept in for the first three weeks the pouch/vavle get aggravated. If I accidentally scrap my fingernail on my stoma it bleeds but then stops - it's live tissue. But, if it's ALOT of blood I'd contact Dr. Fazio.

It's very difficult for anyone to "jump" right into losing your colon. With UC/crohns, the suffering is so bad and/or medication is taking a toll brings you to acceptance a bit easier. Then you add having cancer, it must be overwhelming. Keep trying different foods and reintroduce them - you may find on certain days, you can eat something that previously you couldn't. Alot of trials to do!

We're all here for you, Sue and the newbies!

Sorry I haven't updates sooner haven't really felt that great this past week. However all issues involving how the surgery went were perfect. I went in not being positive if a K-pouch would even be possible with my other complications involving length of surgery. I came with Dr. Kiran being able to use my old pouch and actually make it slightly larger and then make the nipple valve. Had some pain issues after surgery with fentanyl but then switched to diluaded which helped a lot. Since then though have been having a abnormal heart rate of 150 for about 3-4 days and then after that went away started having some fevers. One yesterday afternoon and one about 3.am. this morning. The room cannot get cool enough when I start sweating through the fever. Other then that my pouch seems to be emptying really well. Keep me updated on when your surgery is Steve.

Mark,

Good to hear things are going well. I'm going in for surgery on Oct 9. Would be great to hear about your progress.

Steve

sounds like lots of people are doing great. I am still having problems. always gassy and always on antibiotics. but once i get off it gets worse again. my surgery was in May so I am hoping this will work soon .it would be nice to eats fruits & veggies like i used to also. I hope this will change too.

Well I've been home since last friday but still recovering. I had to have my incision opened up and am still having wet to dry dressings to help those heal. Still on a good amount of pain medicine because of this. I am using my gravity bag basically all the time except when showering I connect to my leg bag for that. I haven't found a really good sleeping position yet that helps empty well at night. I found the tube is kind of starting to stink now but soaping it up in the shower helps to cut down on some of the smell. If anyone has recommendations on sleeping positions that would be appreciated. Also did anyone have appetitte problems coming home. So far I'm still not eating a lot, I had this problem before but not to the extent. It seems to be getting a little better everyday but it's still coming back really slow. I'm guessing it's just because the surgery was so big it takes a while to get my appettite back again.

Hi Mark...I once had my incision reopen and it was a bummer infection...hang in there...

Regarding the tube stinking..yeah, with poop constantly 24/7, it can smell. You can try Devrom made for ostomates, they sell it at www.devrom.com

Your appetite will come back after the infection is gone and you start healing. Take it slow...little by little you'll be eating! Sometimes the pain medication makes you less hungry and/or loss of appetite. Once you start reducing dosage, probably will help you get hungry as well.