Greetings Everyone and Happy New Year!!!

I have intubating problems caused by hernias therefore I keep my catheter inserted into the pouch and capped 24/7. I have done this since around July 27th, 2007.

Recently I have noticed some "feelings" that are hard to describe. I will try to articulate them the best I can: Numbness and tingling in the lower abdominal area around where the belly button used to be but radiating all over the "belly". Tightness but not necessarily fullness. During this "cycle", which usually lasts a few days at a time, I also notice that when I sit or lay down and then try to get up I experience a fair amount of pain in the lower abdominal area which lasts for a fairly short amount time and subsides once I start to move around the room.

Sometimes when I get up [particularly if I wake up in the middleof the night] and get that "full sensation" I experience pain around the stoma which goes away after I uncap the tube and evacuate.

In terms of output -- I do get the impression that output is "down" during these cycles but I still maintain output, i.e. it is not like the output stops, etc.

My imagination tends to run a bit wild ---- words like blockage, obstruction, partial obstruction, death, agony, despair come to mind but I have not experienced nausea or temp.

Have any of you experienced or heard of such symptoms?

Also -- I have heard people with K-Pouch can get pouchitis? Is this true and if so what are those symptoms like. (I don't have any temp and I don't feel run down). I certainly don't have any trouble maintaining my weight!

Any ideas? I would appreciate some input, feedback, suggestions,etc. If I can make it to June 1, 2008 I will have been back to work for a full year without missing any time due to illness. I would sure like NOT to have to make a trip to St. Louis or Cleveland if I don't have to.

Thanks again and have a Happy New Year!!

Alex M. Fine

Pouchitis can be the problem. Cipro is the drug of choice for this. I have taken two a day for the past 8 years because i would get pouchitis every 4 to 6 weeks. Your catheter could also be causing an irritation, but it does sound like pouchitis. Most doctors would be willing to put you on Cipro for 10 days - 2 weeks by just talking to you on the phone.
I hope this helps.

P.S. Your clock is wrong.

Hi Larry!

Thank you very much for your suggestion. Like I said I have not experienced pouchitis with the K Pouch. Interestingly enough this sensation appears to be subsiding, along with the pain on rising and the output is increasing. This is very strange. Have you personally had any of these symptoms that I have described?
********************
BTW -- It is really 2:09 AM at this posting and it was almost 2
am yesterday... I think the clock is correct. Your are just witnessing an insomniac at work! And I still manage to get up at 6am on workdays -- granted a little tired.

Thanks again,

Alex

I have never had to leave the catheter in since the surgery. Most of us with a K Pouch have had pouchitis. It is very common, which is why I use Cipro every day.
You really should talk with your GI about your symptoms. He knows you better than anyone else.
Good luck,
Larry

Hi Alex and a very healthy and happy New Year to you..
I have had the tube in place and clamped and plugged for the last 5 weeks (too paranoid to use only a plug!) plus quite a while before that. I experience pain, numbness etc... especially when very full. I am trying to "grow" my pouch so full is a reasonably permanent condition. I wake up in the night with terrible back pain and discomfort that I think is related to the position of the tube inside of me and what it must be pressing on or touching. Mine is much lower down than yours, I think, it touches the pubis, so my pain is lower but very similar. It is not pouchitis but general irritation from the tube and possibly the belt which I wear rather tightly (paranoid of tube slipage). If you are not suffering from any unusual changes in the color, texture or odour of your output, and you are neither bloated or feverish nor crampy than it may not be a case of pouchitis but irritation due to the tube and it rubbing against you, especially when overly full.
I have just managed to insert a wire and pull out my tube only a few hours ago and will test this system to see if it works and if I suffer less pain and discomfort this way. If so then we may have the answer.
I have found that sleeping on my back with pillows under my legs and knees helps reduce the pain which feels suspiciously siatic at times. Also, when I can't take it anymore I move on to my side and use 2 pillows that I block between my knees and legs to help ease the pressure. Every little bit helps.
Good luck
Sharon

Hi Sharon -
A very Happy New Year to you too! Thanks for the feedback.

Before I make the trip to CC I am going to see if there is anyone in St. Louis that can scope the pouch and send the results to Dr. Fazio.

I don't have any fever and except for the dull pain at the actual stoma site and the numb full feeling -- that's about it. Im worried that the pouch may be pulling away and "twisting"...

I don't dwell on it but it's a lingering thought that -- oh well perhaps a bit OC but not D

I think I am going to take Larry's suggestion and see if the local Dr. can put me on some Cipro to see if that relieves any symptoms -- if it doesn't I can rule out pouchitis.

What is this thing with the wire -- does this help you reinsert the tube on intubation?

I just checked this thread a few moments ago -- so I have not seen your other thread. How are you doing????

Again thanks for the feedback.
Alex

Ok, her goes the wire trick explination...Having problems geting the tube in (after catscan we saw that the valve is angled left) and so my tube 'buckles' when met with resistance, it doesn't matter the material or dimention. In Emerge they manage to get a folley in reasonably easily and then shoot a wire down through it, pull out the folley and then 'track' the median down the wire to get it in! Rather complicated and a grand waste of hospital time and mine...so I stayed on strait drain until Tues...when I decided to use the wire that they gave me in emerge, an 'angio' wire, rather flexible and not sharp.I put it in through the tube, pulled out the tube and left the wire in...now I intubate beside the wire using it as a guide...I think that it keeps the valve slightly straiter and prevents the last inch from kinking.
One complication (other than very severe back pain which I don't know if it is related or not and bowl irritation possibly due to the presence of the wire, the wire is so thin that it 'cuts' the stoma a little ( like a cheese ctter wire!) and so I started looking for a solution.
This morning a cut up an old system that I had and removed a 2mm 7inch long silicon tube with a blunt end on it. I sheathed the wire with it and put it back in....the wire sticks out of it and is taped down on the abdomen but at least I no longer have the feeling of being poked or sliced by the wire....
To be continued...let's see if the back pain/bowl irritation is reduced after this trick..Do not try this without advice from your surgeon...I am in daily contact with Dr. C who follows all of my experiemts closely and gives me advice...
Good luck...Sharon