Well it didn't take a week for everthing to start falling apart aain.
It has been about 8 hours since I have been able to get the tube in and I am starting to worry.
This is not Toronto here.
I will keep trying with various sizes of tubes and hope for the best, if not I will head out the the hospital here and hope that they can help.
Shaorn

You just can't get a break can you?

Ok, I know you don't want to hear this but I think an ileostomy would get rid of so many problems. They can also do it on the LEFT side therefore if you do have a hernia it wouldn't be affected. Jason PA just had his done on the left. Give yourself a break. And I don't know that it has to mean goodbye to your k-pouch forever either. I mean, lots of people have their j-pouch left in and get an end ileo so why not the k-pouch too? I know they're a bit different but its worth asking about right?
You're absolutely miserable - with good right! And its truly horrible to watch it happen.
I know you don't want an ileostomy, most people don't, but if you try to think of it in terms of living in misery or living with mild discomfort well....
Thats my 2 cents. You're in my prayers

--
katie

Thanks Kay bird; for now I am just trying to intubate! I will head for the hospital in a few minutes, can't really wait much longer before it becomes really painful.
I've tried all of my tubes, even reinforcing them with wooden sticks to prevent them from buckling but to no end. Some thing has slipped again or twisted.
I'll write later
sharon

Sharon
Chris always felt a stiff tube was needed also, however, the tube needs to be flexible or it would be a metal rod you inserted. think about it. Take deep breaths and lay down when you intubate. Relax the stomach muscles.
Your new vaslve is not like the old one, not a straight path, you are hitting the wall by attempting to go in with a stiff tube in a forward path.
I have been watching Chris's new valve path as he inserts the tube and it is a challenge.

Some people keep their tubes in the fridge. It keeps them stiff, but not like a metal rod as Holly says. The tube must be able to bend a bit...so it will not damage the valve. Use lots of lubricant on the tube and go slowly...rotating the cath as you go in.

Wishing you the best.

Sharon, Bodoni just made me remember something Chris was told, do not freeze the tube as he was doing per some folks here recommending it but ice the tip only with a cube.
Just trying to offer new ideas.
Keep us posted.

I didn't say to 'freeze' the tube solid. Just put in the the fridge side to keep it cold and mildly stiff. Yes, I have also rubbed an ice cube on the last few inches of the tube as well since I don't keep mine in the fridge.

I still recommend a well lubricated curved catheter for when it is difficult.

Had a rather harrowing day yesterday, emergency rooms in public French hospitals are scary places to be, even when yo know them.
Called in ahead and only waited 1/2 an hour all told before taken in to be "teated".
They sent down the digestive medicine resident who managed to slip a 14gage folley in without too much trouble. Initially it kept U turning and coming back up the way it went in but after a few tries he succeeded.
What am i to conclude? it was not blocked but he felt an elbow in it. We threaded in a wire and then pulled out the folley and threaded in the medina. RELIEF fortunately I don't eat that much for now and mostly fluids or I would have Popped!
Am home, hooked up and miserable. This is not how Iexpected my homecoming to be. Hubby was scared to death when I told him after the fact.
Dr. C called me twice. the first time as I was ready to get into the taxi and then again once I was home.
He does not think that it is a twist or prolapse ( there is no sign of either thank G-D) but he wants the French Guy here to order xray and contrast scoping so that we know more. I see him on weds. and will do my best to cagole him into it.
2 "surprise" birthday parties for me this weekend organized by my hubby. The surprise is that I really don't want to go. Can't eat, dance or party..hurts too much. I am trying to put up a good front for him but I am loosing the fight here. Those bottles of pills on the shelf are starting to look real tempting.
Sorry guys, but I am about to give up the fight. Too much pain. Both physical and mental.
I never believed that I would reach this point but I have. I can't do this much longer.
I will go down with this Ship......

I cannot believe your last post! You have fought long and hard to save your pouch. You have had the support of your family and many friends throughout this ordeal. If you feel that you have lost this battle, then get a Brooke. It is better to lose one battle and still win the war. Many people lead very good lives with a standard ileostomy.
I am sure that the doctors in France would be of more assistance if you had a more common type of ostomy.
There are to many of us rooting for you, for you to give up.

I tend to agree with Larry. There are thousands of folks who have 'end' ileostomies and live perfectly normal lives. They wear normal clothes. Go in the water. Take showers and on and on. Plus they usually can eat just about any type of food. Even more of a selection than someone with a continent pouch.

I too hope you don't give up. I am sure you have too much to offer to your husband, friends and family.

Take care and do the best you can.

Sharon
I know that you're hurting, it feels like ANYTHING would be better than what you're going through but don't give up. Think of your loved ones, not just your husband but your friends they love you, they want to see you alive and healthy. You don't have to fight alone, find someone to talk to, a counselor, pastor, priest, friend... you need support, no one expects you to be able to do this on your own.
I agree wholeheartedly with both Larry and Bodoni, there is so much more to life then the way you poop. Focus on the things that bring you joy, even the little things, those are things worth fighting for.

Take care - you're in my prayers

--
katie

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I had a Brooke for some time before I changed to a Kock, because although I originally was scheduled for a Kock from the beginning, during surgery the doctor felt I was showing signs of being too weak to be able to stay in surgery the additional time needed to complete a Kock. Although I was not thrilled to wake up to the Brooke, within days, I felt perfectly fine about it; because it just felt SO good to FEEL good and not have any big weight on my shoulder worrying about my health. It seems that from this point on, even if your current problem gets corrected again, if you keep your Kock, maybe you will always have a weight of so much worry on YOUR shoulder about these types of horrible problems you are having possibly recurring. You may feel so much better if you change to a Brooke; not just physically, but psychologically if you realize that your worries about these current and recent horrors with the Kock are then forever gone. I had no problems whatsoever, emotionally or psychologically, or physically, or from any life-practical perspective, during the time I had a Brooke. NONE. REALLY!! Please, Sharon, consider that it REALLY is NOT so bad in any way if you changed to a Brooke and it MAY REALLY be SO much better for you in every way. Then you can start to enjoy your life again, and all the people who love AND need you will be able to enjoy life with you without worrying about you as well.

Sharon, Chris is experiencing problems again since the repair 3 weeks ago. Feeling exactly the way you do.Difficulty intubating, the new way with all the twists and turns. He made a choice to leave the tube in and only take it out for a social occasion. Don't know how long this will last. He says it's better than a permanent appliance.
I feel as though his body is just not meant for this. He is losing more weight and with every pound lost intubation changes. He has been going through this only since May.
I can't imagine his Kock is going to last 20 years or even 1. The inevitable truth is he should probably have an ostomy and he is determined to wait until after his birthday. More surgery-dreadful. You know I understand how you feel.
Let me know what happens next.

Sharon, I thought long and hard about posting and now I am going to.
I had a Kock for 24 years, not really by choice it was converted to a Brooke which 2 1/2 years later I changed back to a Kock wasluckyto be in good shape for that).

I wanted to go back to the Kock for all the same reasons you are fighting SO hard to keep yours: I was used to it AND for me it worked well for so many years (for 22 years I never saw a doctor).In addition, there were doctors within 1 hours driving time I could see if needed.

The truth is that when I had the Brooke, after finding the system that worked best for me, I swam, hiked, exercised, ate, did so much and was very healthy ..and it felt good. My husband could have cared less about me wearing a bag, my health was more important...and unless I told someone no one knew. I would be out and about and see people - kids who had their own visible issues (yesterday, I saw a little boy without a hand)and it would get me thinking "how lucky I am, at least the bag is hidden. I can take care of myself, I am still totally independent".

If I was told today that my Kock/valve was in jeopardy, if I was experiencing trouble intubating on a constant basis , and if my quality of life was so compromised that I wasn't 'living' anymore I would go back to the Brooke happily. I'd rather spend the rest of my life with my family than the alternative.

I hope you are reading this the way I mean it to be:
Just to put things in perspective.

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