Saw the doc today

Way to go, Eric!! I'm so happy for you. - Dixie

My valve is all sorts of twisted but I am managing and now I seem to get the tube in, I think my tubes are used to the trail they have to take. I might still consider surgery because I want to reposition my pouch more away from my bladder.

You will be fine. It is easy to panic over this thing at first! It is foreign and anxiety over stupid doctors not learning about them sucks.

Superdooper!!! Youppiiii!!
Great news Eric...now baby that little baby pouch and be nice to it for the rest of your life....
So happy for you.
Sharon

Hi Eric,
Just curious - what did Dr. Cohen say about you having problems trying to get the tube in? I've noticed lately that I have a difficult time intubating if my pouch is full, but I can still get the tube in - just have to try different angles to get it in. My valve seems to change position occasionally. During my last surgery Dr. Cohen gave me a living collar - wrapped some of my intestines around the valve for support, similar to a BCIR. Did he do the same thing on you?

Thanks guys, @ Dixie, Dr Cohen told me a few tricks, and he did say when the pouch is full it can put pressure on the valve, making it more difficult to get the catheter in. He told me sometimes the valve itself can go into spasm, he said remove the catheter, wait 30 seconds, and try again. He also said if you can't get the tube in, take your left hand, place it on your abdomen, just above the stoma, and lift your belly up, it may help straighten out the intestine. He did say that over time, the optimal angle to intubate can actually change over time, so experiment, and try to find the most effective angle to put the tube in. Who knew? I didn't know it can move around over time. I've found that for me, if I insert the catheter at a 20 degree upwards angle, it works 99% of the time. I do have days that I've slept too long, and the pressure is so great the valve takes forever to open, but my little trick? A hot shower to relax my abdominal muscles, and an ice cold bath for my catheter, making it stiffer and easier to insert (when my valve is under pressure, I find a warm catheter bends too easily, taking forever to push through the valve). That's about it for now, I'm still learning, it's only been three months, but I think I'm getting the hang of this!

Cheers!
Eric

Ps - for me, I can intubate much easier sitting down, I sit on the toilet seat, schooch to the very back of the seat, insert the catheter and angle the front of the tube down into the front of the toilet bowel, works almost every time, and is much easier!

Now, all we have to do is get you to pee like a girl too!
By the way, my new normal is having to pee first to relieve the pressure behind the pouch before inserting the tube...sometime I need to pee twice before it will work...
Sharon

Ditto! I always pee first too, a full bladder seems to put a lot of pressure on my pouch, as for peeing like a girl, I've peed sitting down ever since I got my j pouch 23 years ago, I'm just that gay! Lol!

Thanks Eric for relaying the information that Dr. Cohen told you about the valve changing position & the fact that this is a normal situation. That makes me feel a little more relieved. It was in the back of my head that when we start to have trouble putting the tube in is when the valve might be starting to slip & require valve revision surgery. Anybody know, then, when we can tell when we might have a valve slippage problem?

I felt my valve actually slip when it happened. It was horrible pain and pinched nerves and tissue. I remember I was laying on the floor stretching after I worked out. My valve is actually now on a permanent acute angle.

Anyway, I swore I needed surgery up until about a month ago. now the position it is and boiling my catheters before inserting them so a mold is formed I am good to go. So like my surgeons said they rather me learn how to work with the anatomy than rush to surgery. And it could just happen again. I suppose it is up to you. If you feel you just can't deal with it and need surgery then do it. They said I could do the surgery if I wanted they just rather not since it is major and there is chance you can't use the same pouch and have to do the pouch all over. Thinking of going through it all was just overwhelming. I couldn't wrap my head around it.

I would think if your valve is so far twisted nothing can get in then you would have no option. There are some tricks my local kpouch surgeon can do in his office and told me to come back after my last pouch scope a few weeks ago but I haven't gone back in since learning to boil some catheters has helped me a lot.

I am going to the Cleveland clinic in 2 weeks to see Dr. Shen about my GI issues in general so if I get a surgical consult I might ask about all this for the hell of it.

Dixie,
Be reassured, most valves take an awful lot to slip especially if they are healed...if ever it does slip, you usally know it or at least feel the result rather soon...also, it is normal for your valve to move around a bit and change directions...my first one never did but this one is very mobile and keeps me guessing...I just point and try...if it doesn't work I try an other direction...as for needing to build a new pouch when you have a slipped valve...it is untrue...there is no reason to make a new pouch just because there is a slipped valve..usually they just try to fix it but if for some reason it is too far gone (not frequent!) then they just cut another piece of intestine off at the afferent limb (the part leading into the pouch, flip the pouch over and start again without rebuilding a new pouch...so very little chance of short gut syndrom and a much easier surgery too (although still tough)...PM me if you still have problems or worries..
Sharon

I wouldn't say that is untrue about a pouch redue. It isn't known until they go in if that pouch can be used again. I didn't hear this from one surgeon. Of course you might not go through this but they do have to tell you it is a possibility if it isn't able to be used again they build a new one. Same with telling you you might not wake up with a jpouch or the BCIR if there isn't enough to work with. I had to sign all that paperwork before surgery.

I wish mine just moved around. Mine is stuck, deep embedded on an angle. I guess the good thing is I know it's the same way every time.

Vanessa,
I said valve redo...not pouch.
Sharon

Thanks everyone for all the information. I had my surgery November 24th & was intubating just fine until about a month ago. Then I started having problems inserting my tube & it was then that I realized my valve was moving around. I'm on my second Kock pouch & my first valve didn't move at all & I never had problems inserting my tube. My first Kock pouch fell off my intestional wall. Dr. Cohen was unable to repair it & it was at that point he took out the first Kock pouch in it's entirety & built a new second pouch. I try not to worry, but every time anything out of the ordinary happens I do get worried that I am on the path to another surgery. So, it's wonderful to hear that a mobile valve is a normal situation.

Dixie,
I found that moving around a bit helps when I cannot find the right direction or am overful...Twisting and turning a bit or standing and bending forward and back..then I try to reintroduce the tube...could take a few tries...I also, in extreme emergencies lay on my back on the floor, raise my legs (a leg lift) over my head and try to lift up my hips or lift my legs up onto the bed while laying on the floor..the thing is to lift your hips up to get your pouch to move around a bit..then try again.
Sharon