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My valve is blocking regularly...yesterday at school...it got stuck going in...took about 5 mins of pure panic to finally get the tube in  and empty my pouch (I am over 90 mins away from school by public transportation so my day is over if I can't intubate)...

Then this morning when I got up...felt like the valve stretched and was made out of rubber...couldn't get the tube in...Changed tubes and it finally worked...

I find myself praying that the pouch has fallen off of the wall again and that it is not the valve itself...because if it is I am really in Big trouble...no one here can fix it.

So, now we start running from hospital to hospital to have tests and see what is going on...darn.

Sharon

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Thanks guys,

I am in intellectual warp speed...trying to imagine solutions if this cannot be fixed...I need to talk to a tube manufacturer...I think that I have found a long-term semi-solution to valves that cannot be fixed but I need someone to try to make a prototype for me...(I can be my own experiment!)

I have figured out how to make a permanent indwelling tube/valve with a double safty so that it does not leak (kind of like our own valves (with a lid)...so that we can pop open the lid and then stick the tube in without everything gushing out...anyone out there have any idea who can make this for me?

If not, I am in big trouble...will try to get in to see my radiologist next week and find out exactly what is going on...it is easier to intubate empty (duh!)...meaning that I can no longer allow my pouch to fill up...need to keep it semi empty at all times (again)...not panicked yet...just terrified...haven't said a word to hubby...I do not need another heart attack.

My school schedule is crazy...I teach 9-11 classes a week (that's 3.5hrs per class) plus prep work and correcting exams (yuck)...cannot drop out now if my life depended on it...and I live in the boon docks...hubby is helping a lot...we now have a cleaning lady and he picks me up from the train but it is still a very long ride...this is not the time to have my pouch die on me!!!!!

crap...

Sharon

 

sharon

such a tough situation.  and you are being so upbeat--absolutely amazing the importance/dedication that you place on continuing with your teaching.  others would call in sick until the problem was resolved.

love your idea of the new valve.  it is similar to what i imagined the value would be, prior to having it explained to me.  sorry i don't know of anybody who can make one up.  maybe contacting some of the k pouch docs, especially ones like dr. bauer in nyc who have been around awhile (he studied under dr. kock.)  the docs or ostomy nurses might know of earlier versions of the k pouch maintenance or come up with a solution suitable for you.

one forum member has posted about having the catheter in 24/7.  is that an option, or would it irritate the valve too much?  sending you healing white light.  janet

Well I just got up from a 2hr meeting with an engieneer...we have designed the prototype for the valve...he is going to make up the prototype and have it for me in a couple of weeks...made out of a hard plastic for now but once I approve of the design and we try it out he can make it in silicon.

I do better when I am proactive...worrying does not help me but doing something makes it easier to not worry.

We have found out how to make it leakproof and how to put a lid on it...now my question is how are we going to get it to stay in and not pop out without having to glue it to the skin like a flange nor wearing a belt.

I feel better knowing that there may be an option out there other than surgery or a bag.

Sharon

ps...

Janet, 

I wore the tube taped in for months at a time when my valve was compromise...I used a colloidal patch over the skin to protect it then taped the tube to the patch and plugged it with the syringe tip cover.

It makes you feel very vulnerable especially when taking the subway or standing up in class in front of 35 students!

 

sharon

great news about the prototype.  that' so exciting that you could engage an engineer with your nifty idea!  i agree, best to be proactive than worry.  that way something gets done.

i hear you about the taped on tube!!  i was thinking that if you couldn't insert--or remove--the catheter that the 24/7 version might hold you over.

i'm cheering you on.  janet

Thanks Jan,

I am hoping that once I see the prototype(s) that I will have one of those 'ah ha' moments...where you say, "I know how to make this work" and then "poof" it does!

For now we are trying a single valve system & a double system...one where you just have the indwelling valve and an extendible lid (thing those straws for the kids) and another 2 part one where you insert your tube into the indwelling as if it were your normal valve...

I am aiming for 4 weeks to get the 1st prototypes in...

I should have started working on this years ago....when I needed it last time.

For now I am trying to keep my head attached to my shoulders...and not panic

Sharon

Pretty sure that I have a pouch twist...not sure if it is unhooked (fallen off of the wall) or not...or if it is just hanging at a funny angle.

My transit time is usually very rapid, from meal to meal or under 1 hr in the mornings after juice and coffee. Now I am semi-blocked. It is diner time and my morning coffee is still gurgling around in there begging to come out.

I am burping like a sailor! 

My trajectory is way off too (the direction that I need to aim the tube to get it to go into my pouch). That is probably why my valve is hooking onto the tube...

The lower back pain, aching and cramps mean that something is not flowing...

There is also a very small hernia just below the stoma (I know exactly when and where it came from...6 weeks ago the Ethiopath was doing deep tissue massage and inadvertantly pushed really hard on my abdomen just below my stoma...I had some very sharp pain for about a week and a huge bruise for a month)..now there is a weakness on the site and the muscle hurts when I intubate or twist.

So I am still waiting for the appt with the radiologist  but at least I am optimistic now...if this is the case then I can hope that my valve is not damaged, just twisting or turning in the wrong direction.

Sharon

 Sharon this is good news, given the bad news situation.   I often think that the doctors might know more about medicine then us patients, but we know far far more about what is going on with our bodies. You certainly do! And good for you to think this out so thoroughly.    Hope the doctor appointment goes well and provides a solution. Janet

Last night I found myself playing twister trying to get the tube in and the pouch empty...I think it was left leg red and right leg yellow that finally put the pouch into the exact right position and suddenly everything came shooting out (what a relief!) but I nearly fell off of the seat doing it!

I have not been that blocked in ages.

So, that means that it is without a doubt a twist. 

This morning the tube went in strait (!!!) for the first time in weeks...but I still need those tests done...I have the opac solution now I need the doctor!

Sharon

7 phone calls to 5 different radiology centers...each one sending me to the next one to get My radiologist to do the exam...either they don't answer or they send me to the next hospital, center, clinic...or to another phone number...

This one told me to call back in 2hrs because they are closed for lunch!!!

How does one get a contrast study done without a radiologist?

Grrrr...

ps...the blockage has (finally) resolved itself but am still a bit nauseous.

Sharon

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