When my pouch gets full it becomes very difficult to incubate. I have never had any incontinence after 48 plus years, but my difficulty in getting a tube in when it gets full is concerning! Also, my pouch can get full 30 minutes after I just emptied it, so inserting a tube is getting worrisome. Has anyone had this problem and are there any suggestions as to easier ways to incubate when a pouch is full?
Thanks so much!
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hi-- I have similar problem, but pouch not full after 30 min. Best suggestions are techniques you probably use: urinate, or relax those muscles as if urinating; relax; extra lube. Sounds frightening.
When was the last time you had a pouch scope, and was all normal at that time? Any feedback from GI doctor?
Keep us posted please. Jan
One idea is related to catheters. Do you use the “standard” Medena with 3 holes? Have you tried a Marlen with the bullet tip and two holes? I alternate between both of them. The bullet tip seems to pass through the access segment and valve a little smoother, but the two smaller holes can take longer to empty and depending on what I’ve eaten, can have some debris stuck in the holes. The Marlen bullet tip are more than twice the cost of the standard Medena, but are definitely worth having in your supply cabinet. Another idea is to leave the catheter in for a week or two. You can cap off the end. Sometimes this can help. The good news is that you remain continent, as this is usually not the case with valve issues.
Thanks for the replies!!
I've never had my pouch scoped in 48+ years, didn't even know of a pouch doctor until 36 years after Mayo surgery when I had trouble entering. It turned out I had a rare problem in that my opening had gotten too small to allow the catheter to enter.
I have always had trouble entering when my pouch reached a certain level. My guess is my valve works too well thus why never any incontinence but a battle to incubate at times. I'm not excited to have anyone do my work on my valve as if it doesn't go well I could find myself with an ostomy.
I use bullet tipped catheters as that what they used at Mayo. I often wondered if a smaller bullet catheter would be easier to enter when my pouch gets full. I would not want it to be to small as I think you might be able to puncture the valve.
Thanks again for your thoughts!
I know it might be obvious, but do you use extra lubricant when you experience a difficult intubation ( not just the tip of the catheter, but maybe several inches of it lubed). Another trick can be to do some stretches up and down and side to side, some “marching” in place - sometimes it can make a difference when accessing a full pouch. I went 30+ years with a scope or seeing a surgeon- until I had issues a few years ago. Dr. Kiran in NYC re-did my valve and it’s working great. 🤞
Here are a couple of thoughts, some of which you are already onto. Bear with listing. Get back to me if pithiness sacrificed clarity.
-- increase stoma size, which you already did. I still mention as for me this was huge difference. Now I use 34 FR with increased holes' size. (Will post my DIY method.)
--an Ostomy nurse provided me with 28 FR size. Doubt it could mess with the valve. It was too flexible for me.
--put catheter in freezer so less flex.
--in addition to Kim's great dance routine, try inserting when standing or lying down. I used to clamp off the end for extra caution.
--check this site's master list of K-pouch surgeons for one in your area. If none, I get it. Do you see a GI doc, or does your PCP understand your GI needs? If so, perhaps one could arrange a consult with a Columbia NYC doctor--with you on line. While obviously I can not speak for their willingess, I know they are all in for educating other doctors about K pouches.
--do you irrigate? If not, your pouch might not be properly emptying. thus it soon feels full.
--any change in diet? Keep us updated. Lots of collective experience in our k korner. Jan
Thanks for the ideas! I do lay on my left side and it can help and I also find exercise can help as well. What's also interesting is if my pouch is not too full it is incredibly easy to enter.
Next time I'm having trouble I'll put on some music and Bust a Move and see if it helps, Thanks!
So after reading everything I have a few questions. Are you inserting into your rectum? My new surgeon said he had one other patient do this and it works great for her. But I’m not sure I can do this. This jpouch has taken to many years of my life away. Sorry if this doesn’t relate to a jpouch. Thank you.
Grandmaof1-
no, we aren’t talking about a j pouch, we are referring to an internal continent reservoir which is a K pouch or Kock Pouch named after the original surgeon. There is also a similar internal reservoir called a BCiR. These two internal pouches are similar. They are drained a few times a day by inserting a catheter into a type of stoma on the lower abdomen and through a valve (made of small intestine) and just drained into the toilet. You decide when you are going to drain it. In between draining times, the stoma is continent (doesn’t leak any stool). There are a few surgeons who do K pouch surgery. In the USA: New York, Ohio, Minnesota and North Carolina.
Hi, a couple of thoughts here,
1. your pouch may have a slight twist making it smaller and when it fills the valve tends to clamp shut.
2. If it is a living collar type of K pouch (mine was converted for the stability about 12 yrs ago) then it automatically fills the collar like a doughnut and clamps it more shut (grammatically wrong but biologically true!)
3. a dropped pouch can fill and sit on the bladder. When the bladder fills it pushes it back up and makes it harder to get the catheter in. Try different trajectories. Aiming up, sideways, downwards...save and use old, stiffer catheters. They are lifesavers when I have problems intubating.
4. Press 2 fingers flat against the skin just below the stoma and then push gently (very gently) upwards when trying to insert the catheter. It does help. You may need to find the direction so if upward doesn't help then try sideways or downward.
5. Yoga positions like on your hands and knees or the downward dog position may help to reposition your pouch and make it easier. I do various Yoga/core/ab exercises most mornings and they put my pouch into the right position for intubation and actually help more out the stuff hanging around in the bottom of my pouch!
That's all that I've got for now...
Come visit us at Poucherlifestyle (the private group) on facebook...I've got lots of ideas to share.
Sharon
