Dear Winterberry.  Six years ago I went vegan.  I don’t recall any major changes with my pouch but I chew a lot more now to keep things from clogging tube - chopped kale, mushrooms, etc.  I love being vegan and eat just about everything but try to avoid portobellos and pineapples (and NO potato πŸ₯” skins, oh how I miss those).  Each year I’m stronger and healthier.  Plus I love carbs but try to keep them to just a few a day.  

Yes, I use a moderately dissociated mixing fruits with meals or carbs and protein at the same meal. 

It works for me and seems to be very effective for digesting foods better. Very few problems unless I mix things up.

Fewer problems with gas and pouchitis. 

It is easy to do and requires no special skills or training. 

And yes, no-handed intubating is quite complicated!



skn69 posted:


thank you so much. We suffer, we survive and we live to tell the tale...that is what I was taught...that we pass it on, transmit the experience in order for others to lean and not have to make the same mistakes that we did.

The suffering will happen to us all, no matter what. Age brings on its own share of indignities and having suffered does not protect us from that.

I used to say that with all that I have suffered, I should get a pass on the stupid stuff. 

But I didnt't.

I recently (18months ago), broke both of my arms and my joke.

I was running (never a good idea in Uggs) from one campus to another and hooked both feet on a raised subway grating.  I flew like superwoman (I am superwoman but I cannot fly apparently) and landed arms first. Hit my face next and then my knee. I passed out for the 1st time in my life.

So, I had always wondered how I would deal with my k pouch with only 1 arm (sort of like when you have an I.V. in it) but it never occurred to me how to do it without any arms...

They did not cast me, only x-rayed the 2 elbows and said that they do not cast elbows, to wear a sling...1 month later they were more broken than before. 

18 months later they have not healed and they will do nothing to help me other than operate to remove the radial heads on both arms...Risky because they could paralyze my arms or do serious damage...

I live with it and have developed all sorts of new ways of intubating...we are, a resilient group...we find what we need to do and do it. 

It isn't easy but it works...had to change my eating habits for a while..only liquids and soups etc so that I never had to irrigate or remove chunks from the tube...Had a nurse come in 3xs to help...She was a disaster and I gave up.

If I have any advice to give us all it is that the future is unknown so be prepared for anything...keep a hook-up kit ready, available and easily accessible, where you can put an indwelling tube in in a pinch and keep it there without help.

Always prepare 2 extra kits for travel and keep 1 in a carry on at all times if needed. 

In 2 months I celebrate my 40yrs with my k pouch and I have never, ever regretted taking the risk and chance with Dr C...I thank you A thousand times for trusting me.



Hi Sharon, I believe you have lived many of my nightmares especially if I was unable to use one of my hands!!  Obviously you have a wonderful attiitude in living and hope you continue to heal. I've never heard of a 'hook up kit', what does that even consist of and where did you find it? Again you are truly

a survivor and making the best of all that has happened with you, I'm so

in awe.    Debby


1974 Kock Pouch posted:

Had my KP done at Mount Sinai in NYC (Drs. Gelernt and Kreel) in November 1974. I would be interested in finding anyone with a perfectly functioning KP for as long. Happy 44th to me!

40 Years last February for me.  Drs Devroede and Poisson,  Centre Hospitalier de Sherbroke (CHUS) Quebec, Canada.  Smooth sailing ever since except for an intubation problem in 2014 & 2016.  Touch wood - working better than ever!


Hi Debby,

Thank you. I am a survivor like all of us here, with just a bit more experience than most people...that gave me time to experience more disasters!

What is a hook up kit? I start with a large makeup bag and add a free mini tubes of lube, 2 or 3 different sizes of tube (24, 30 and 32 plus a folley Cath), a guide wire (a stiff semi rigid wire that you can place inside of your Cath to help push it past twists or turns in your valve... and once in you can pull it out) , transparent  or other tape, a catheter plug ( they are usually green but you can use the "tip cover" of a 60cc syringe too), gauze, colloidal patches and a leg bag.

I keep 2 kits in the house, easily accessible and ready to go.  I throw 1 into my suitcase whenever I travel during difficult times to make sure that if I have access problems I can just hook up.

I insert the tube with the plug or legbag already attached and taped down for extra security. I then tape it into place securly  on my abdomen or place a colloidal patch across the whole stoma area with a keyhole cut just large enough for the tube to fit through. Once the tube comfortably inserted  and pointing in the right direction, I cover it with a 2nd colloidal patch and sandwich it down. 

That means that my skin is protected with 1 patch and the other is holding the tube flat against my abdomen. 

I leave space for some gauze at the base of the tube/stoma and wrap it with gauze to collect the mucus.

I have lived hooked up this way for months when needed and found it to be the safest and most secure way to run around hooked up.

I even went to work by subway for 3 months like this.

I hope that you never need it but in an emergency it is nice to have it ready.


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