34 1/2 years with my Kock Pouch....

When does it get better is what I keep asking. My body hates my plumbing. I am still new just 10 months post op.

was your surgery performed by Dr Bearhs at the Mayo?

Vanessa,
It takes time to get better, your pouch is still in its infant stage...imagine a baby...it takes 1-2 years to master their plumbing, why would you expect to master yours any sooner?
Fine, you are not an infant but your brain and body have to re-learn a whole process that they thought they had mastered already...10 months is nothing at all (except when you are living it...I know)...keep your food journal going, keep track of what works and what doesn't and when and with what else...I am a really big fan of 'fit for life' espcially with my pouch...I have found that seperating my protiens from my carbs really does help my digestion and allows my pouch to do its job better...and I suffer less...things seem to work better for me that way...no fruits after meals (I only allow myself fruits after protien meals and even then I am really careful about which fruits...peeled grapes or ripe mellon)...White flour is my enemy because it glues things up and makes emptying harder and stringy fibers are a problem but well chewed nuts are just fine...if I had know all this the first years with my pouch I would not have suffered half as much so you can try a high protien, low carb diet and see what your pouch thinks of it...it is really the only thing that I found that really helped mine...
Good luck and keep track of everything that goes in, comes out and when.
Sharon

Hey Jasmine,
Nice to hear from you and so happy that you are still one of the really great success stories...drop in a little more often...you make us all feel a little more optimistic about our pouches.
Sharon

Thanks Sharon....

I didn't have a website to go to, it was all trial and error through the years. I can eat things now that I couldn't eat in the beginning with my Kock Pouch. Your system adjusts and adhesions loosen up....you learn what works for you and everyone is different. I'm big on a food diary and medicine and supplements on there too. With me NSAIDS were like poison to my pouch, really irritated it and still does. Watermelon is one thing that gives me blockage in the intestines...so I don't eat that. I was 25 years old when I got my Kock Pouch, I am now 60 years old. I have gone through menopause with no problems concerning the pouch.

Yes, my doctor was Dr. Beahrs at the Mayo Clinic at Rochester, MN in 1978. I was one of the first 200 Kock Pouches done there...I have never regretted it.

congrats Jasmine...wasn't it scary back in the olden days feeling all alone? Your posts are so important in this forum...keep up the great work!

I got mine in 1979 and was the 13th (yikes!) that Dr Cohen had done thus far...When I left Toronto to move here 3yrs later I felt like an Edsel...no one knew what it was all about, what to do with complications, pouchitis or eventual disasters...I even had doctors tell me that 'that is impossible, you cannot have something like that'...so much for international communications...it took me 20yrs to find a surgeon here who did them and then I learned that he did them 'wrong'. That is why he stopped...high failure rate.
Thank God for internet, this site and the modern world.
Its been 33yrs and a rather rocky ride the last 10 but I have never wished that I didn't have my pouch or wanted to be rid of it...I love my k pouch and hope to keep it till my last breath...a long time from now.
I just hope that there will be a few more surgeon who want to learn the technique.
Sharon

Thanks JaniceM...

Doctors and nurses in my area still have never heard of a Kock Pouch....unbelievable after all these years. I thought back in 1978, that this would become the new way for ostomates. I think they thought since the output was kept in the pouch that it could cause pouchitis. Not so...and who knew they would figure out a way to have your plumbing hooked up to a rectal stump in the future. It's amazing to watch the changes over the years. I must admit, I like the Kock Pouch...no urgency, no having to know where the bathroom is, and no chances of UC returning in the rectal stump. I wish more doctors did this surgery, it is an excellent surgery. We need more awareness of this procedure.

I am ok with the actual pouch. It is my gut that is forming no stop small bowel bacteria overgrowth so it's a train wreck and really hard to get by some days. The gas and movement is the worst. On a certain diet now and other things to try to get it under control but it is a life long thing I will now have.

Congratulations Jasmine!

Of all my surgeries, Dr. Beahrs was the best. I know I was fortunate that it had lasted 24 years, but would have liked more.

How has the Tpouch worked and who was your surgeon?

Thanks

My Tpouch is working as well as my Kock did.
I have some leaks. They are avoidable if I would balance my food choices and/or get my lazy butt to the bathroom and empty the pouch when it is full.The leaks are not often enough to complain about.

What's different about the Tpouch is that the catheter goes in the same way each and every time. The catheter isn't looking for a path.

Dr. Greg Shore did it while he was at a hospital in Florida. To my knowledge, the department was closed and he is now in Tennessee.

interesting.... i heard T-Pouches are only for urinary continence, and not for stool. i can't find the old post though...

glad things are well

Crossovers are interesting.
I have a friend who has a continent neobladder she empties with a catheter.

Does Dr. Behars still do K- pouch surgery at Mayo? I am at my wits end with this colo-anal anastamosis. They think I now have a "kink" in what's left of my colon and I need another surgery and will be incontinent forever. I, too, have a severe adhesive allergy and cannot have a perm illeo. When I had a temp illeo every appliance from every brand fell off or caused an infection. I tried and I would be ok with a perm illeo if my skin didn't react so badly. I have severe psoriasis and if adhesive touches me I get a giant welt. I can't even use hairspray

Wow, you're such a inspiration! I've only had mine for 5 months, only 1 case of pouchities, so I've been Blessed. Thank you so much for your post. I pray that mine will be as successful as yours has been. God Bless You!! grandma64

Dr. Beahrs is deceased, I'm sorry to say. The Mayo Clinic no longer does Kock Pouches. I the Cleveland Clinic is probably the top in Kock Pouches now. The do them in California and New York too. We have a Doctors list at the top of the thread so you can check out who you would like to research. I'm from WI too.

Thanks Lesrich.....

I hope the gas gets better because that alone makes me mad.

Watch so you aren't eating gassy foods and drinks, sucking through a straw, smoking or swallowing air when you eat. Charcoal is for gas, the supplement and there are other things you can take too, over the counter type things. In time my gas pains have gotten better. I know one thing that really causes gas in me is green peppers, you will just learn what you can and can't tolerate.

Such interesting comments. So pleased I discovered this site.
My surgery was just over 38 years ago. Mini problems but I so believed in the surgery.
I get so tired when people say the surgery was something of the past and not relevant today.
I think we all took the chance to move the surgery on from the traditional surgery. I just still feel I am right with my outlook and those that do not understand just judge something they do not really understand.
Thanks everyone you cheer me up. Patricia

Congratulations, 38 years, that is fantastic!!! I believe in this procedure also, I wish they did it more and more people knew about it.

Hi, Jasmine! I am about 8 months out from my proctocolectomy and k pouch formation and I am getting along great! My only issue is that I am now having a lot of pain/pressure in my bottom!! Is that normal?? Also, my surgeon didn't stitch my bum up all the way so I have leakage, just a clear, sometimes yellow tinged drainage, but I HATE IT!!! Any suggestions????

Thanks!
Holly

Hollyfaith,
Have you been taking sitzbaths with salts in them? They do help the pressure down there and and draining...not much else that can be done until it all drys up down there. If the doctor is not converned about it then that is all that has to be done.
Sharon

Yes, it is normal to have pain when your rectum is removed. You may also have fantom urges to have a bowel movement for a while too. Mine wasn't sewn shut totally either, I also had some drainage and I wore a feminine pad until the drainage stopped. At the time, I was told my bottom incision may take up to a year to close.

I had my Kock pouch surgery performed in Zurich in March 1974 with Prof. Nils Kock, who was teaching the procedure to other surgeons at a Hospital in Zurich.

And for the past 39.5 years, except for switching from a FR30 catheter to a FR28 because I could not get the FR30 into my pouch, everything has worked perfectly....until now.

Now I am having a lot of difficulty getting gas out of my pouch. When I intubate, I get only stool. No gas. It is very worrisome and I cannot figure out what is wrong.

Has anyone had this problem ?

Thanks

Fred25

Fred. I had issues like that and it was SIBO (Small Bowel Bacteria Overgrowth) I cut out sugar and carbs and it got it under control with some antibiotics.

Fred, I have had my pouch since 1980. If I can't get gas out, while the catheter is inserted and I'm sitting on the toilet, I move my body positions (bending down, side to side, etc) and I've ALWAYs have had bear down using my abdominal muscles to get gas out.

And, of course, irrigating will help move gas too even is poo is thin.

Thanks Vanessavy and JaniceM. I'll check out the bacteria overgrowth possibility and try bending this way and that to get more gas out.

I too almost always have to use my stomach muscles to get the pouch empty.

Fred,
I agree with Janice,
I bend forward, twist from side to side and then try urinating to relieve the pressure of the bladder on the pouch too..depends on where you pouch is situated and if maybe it twisted to turned a bit and thus the air is trapped in a corner. Especially if it worked fine before...could also be stretched a bit and flopping over and causing there to be an inaccessible areas.
Nice to know that after all this time it is working well...What do you eat? How has your experience been? Mine is 34 and has had its load of complications but I still love it and am a huge fan!
Sharon

I too am suffering from excessive gas for months now - surgery 1979 in NYC.
Does anyone use VSL #3? My GI recommended it. Any other helpful hints. I find that I suddenly have to change my diet to not have to empty so much. I use to be able to empty every 6 or 7 hours - now I am down to 4! Help! Is it because of aging?

The probiotic I use is Acidophilus, it's cheap and works for me.

As far as gas goes, you may gave a bacterial overgrowth or a food sensitivity. Food diary helps with this. I get gas from certain cauliflower, broccoli, green peas, green peppers, ice cream, milk....just keep track of what you personally have issues with. I don't drink soda or drink through a straw, be careful when eating so you don't swallow air.

Sometimes when I am emptying my pouch sitting on the toilet, I will stand and bend over while pointing the catheter in the toilet. This is the best way for me to get gas to come out...and to make sure my pouch is emptied out completely. My trick, works for me.

I stand up and bend over too with the cath pointing in the toilet. Everything comes flying out that way. If I sit on the toilet I am there too long. I want in and out in 2 minutes.

Thank you so much Vanessa & Jasmine you don't know how wonderful it is to connect to someone in the same boat as you! Happy New Year!