Can you list any drawbacks? Thanks!
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Any major surgical procedure, including the K pouch, can have complications. For the K pouch, these include valve failure, pouchitis, fistulas and stoma stenosis. Most of these can be corrected with surgery or non-surgical treatment. Only about 10% of pouches need to be removed and replaced with a conventional ileostomy. The majority of people with these pouches have positive results and would do almost anything to keep them if they developed complications. Research your options and get a second opinion if your doctor downplays this option.
Thanks! I have read all that and have talked in depth to my surgeon. Just looking for first hand experiences.
Worst things about having a k-pouch for me
1 - can't pass gas without putting a catheter in. Kinda annoying. And you can't tell if its gas or you really need to empty the pouch. Feels the same.
2 - having to chew foods so small so they can make it out of your catheter and pouch. I fail in this all the time and am always taking my catheter out and pulling out bits of veg from the holes 
3 - having to have a catheter on you 24/7. If you don't have a catheter and you need to empty you are in BIG trouble. Once took a flight and realized I didn't have a catheter in my purse or carry-on. I almost had a panic attack. thankfully it was a pretty short flight.
4 - nobody knows what a k-pouch is. this includes a lot of health professionals. I am an RN myself so I know when people nod their head but really have no clue what I am telling them. I watch them walk away and think 'bet they went to google it'.
All this aside, I love my k-pouch. Way preferable to a conventional ostomy for me!
@kaydbird posted:Worst things about having a k-pouch for me
1 - can't pass gas without putting a catheter in. Kinda annoying. And you can't tell if its gas or you really need to empty the pouch. Feels the same.
2 - having to chew foods so small so they can make it out of your catheter and pouch. I fail in this all the time and am always taking my catheter out and pulling out bits of veg from the holes
3 - having to have a catheter on you 24/7. If you don't have a catheter and you need to empty you are in BIG trouble. Once took a flight and realized I didn't have a catheter in my purse or carry-on. I almost had a panic attack. thankfully it was a pretty short flight.
4 - nobody knows what a k-pouch is. this includes a lot of health professionals. I am an RN myself so I know when people nod their head but really have no clue what I am telling them. I watch them walk away and think 'bet they went to google it'.
All this aside, I love my k-pouch. Way preferable to a conventional ostomy for me!
Thank you so much for the reply! Have you ever needed a revision or had to go to the ER? How long have you had it?
Allow me, Kaydbird, to add onto your excellent comments.
1.I don't have gas problem, unless talked too much or gasped for air when swimming. I can't run, so don't know if one gulps air, which can cause gas.
2. Yup, major problem. Some foods are off the table, the non-digestible ones. Mushrooms do not submit to chewing--but cream of mushrooms is fine. I chew fresh spinach, but do not eat steamed. Fresh peas I chew for taste and hopefully some nutriments, but need to spit out the fiber. Corn is similar. Some good news: I use 34 FR catheter, which is denser then the 30 FR , and enlarge the holes. Will post photos.
3. Similar experiences, but as we all survive how much of a problem is it? Don't eat if forget.
4. Interesting to hear comment from a RN! Oh yes, I know what it is but they don''t. I often say 'oh, you are too young to know about this old technique' and try to cajole them into listening to me. Or I'll mention that my concern is blah blah, which as you know and then explain the k pouch.
Being over-seas I've had some interesting ER/hospital visits. One doc asked me why I would ever travel to wherever I was, I think Bosnia. Was sneaking out of Qatar hospital--that problem was more about being single woman without male escort--when realized they had my passport. Had to stay another night.
Problems encountered in so-called third world countries, where no toilet for miles, folks go out in the open, or the toilet only handles pee. Some out houses can be challenging, as are squatter toilets, esp. if exceptionally dirty. I have techniques, if anybody needs them. Or can wear a leg-bag during the day, which is easier to empty.
My biggest problem is dehydration. I take sodium supplements (1-3 g daily), monitor my water and avoid sun and heat. I've had several years when in ER 3-5 times and also hospitalized.
Oh, and my output stinks, unless I take Devrom. It tamps down the PU factor.
This said, I too vote for K! Had a failed J pouch for woefully too long and an external bag for a year. This works for me, not limiting nor do I think about it, although plan my day accordingly.
Great you are asking questions. Don't mean to scare you. Also, we are here to help you through the first several months post op. Keep us posted please.
In solidarity with Ukraine!!! (also some crazy toilets when I lived there.) Jan
I have gas sometimes but sometimes I know it's gas as a lot of times I get a rumbling sensation. I get the gas because I have post nasal drip. As I understand it every time I clear my throat of the drip I glup in air. And I think I sleep with my mouth open which then apparently I breath in the air. So I get a lot of gas. Sometimes with the gas I have a slight problem getting the catheter in esp if I don't empty right away. I just try to relax and stay calm and gently insert the catheter. Then I can get it in so far and some of the content comes out which is the gas and other stuff. That usually makes it easier to slide the catheter in further. In the beginning sometimes I wasn't able to slide the catheter all the way in but, I thought, since I was able to drain out some of the content I tried not to worry about it. Than. later I would try again and everything would go much better. I very rarely have been to a public bathroom to empty my pouch. I don't eat corn anymore since it isn't very digestible and it gets stuck in my catheter. But most everything I've eaten before I can still eat, thankfully. My dr told me to drink 10 to 12 cups of liquid per day. In the winter I drink 10 in the summer about 11 or 12 depending on how hot it is. If I don't stay properly hydrated I get leg and foot cramps in the night. So I have to keep track of how often I empty the pouch and how much liquid I drink. The worst problem, for me, is that the doctors I've gone to don't seem to know what it is and the probable lack of understanding and knowledge about the K pouch in the medical community. Yes it took a little getting use to but with the help of this forum and trying different solutions of how to deal with it I've adjusted to the pouch and I'm happy with it. Good luck to you.
LadyTay--the cramps are indication of dehydration. Besides legs cramps develop in my hands. Feels a bit worse than trigger finger and in all fingers. In the winter I drink about 1.5-2 L. water daily and take sodium tabs of 1-2 g. Interesting you don't need the sodium. In summer both sodium and water increases. Need to compensate if I drink extra coffee or have wine. Wish there was an at home test for electrolytes. Just another thing for us K poachers to invent..... Jan
BTW, a trick w corn is to cut kernels in half. Easy to run knife down each row either before or after cooking. Love corn on the cob. Or, if alone, chew it and spit out.
@jan15 posted:Allow me, Kaydbird, to add onto your excellent comments.
1.I don't have gas problem, unless talked too much or gasped for air when swimming. I can't run, so don't know if one gulps air, which can cause gas.
2. Yup, major problem. Some foods are off the table, the non-digestible ones. Mushrooms do not submit to chewing--but cream of mushrooms is fine. I chew fresh spinach, but do not eat steamed. Fresh peas I chew for taste and hopefully some nutriments, but need to spit out the fiber. Corn is similar. Some good news: I use 34 FR catheter, which is denser then the 30 FR , and enlarge the holes. Will post photos.
3. Similar experiences, but as we all survive how much of a problem is it? Don't eat if forget.
4. Interesting to hear comment from a RN! Oh yes, I know what it is but they don''t. I often say 'oh, you are too young to know about this old technique' and try to cajole them into listening to me. Or I'll mention that my concern is blah blah, which as you know and then explain the k pouch.
Being over-seas I've had some interesting ER/hospital visits. One doc asked me why I would ever travel to wherever I was, I think Bosnia. Was sneaking out of Qatar hospital--that problem was more about being single woman without male escort--when realized they had my passport. Had to stay another night.
Problems encountered in so-called third world countries, where no toilet for miles, folks go out in the open, or the toilet only handles pee. Some out houses can be challenging, as are squatter toilets, esp. if exceptionally dirty. I have techniques, if anybody needs them. Or can wear a leg-bag during the day, which is easier to empty.
My biggest problem is dehydration. I take sodium supplements (1-3 g daily), monitor my water and avoid sun and heat. I've had several years when in ER 3-5 times and also hospitalized.
Oh, and my output stinks, unless I take Devrom. It tamps down the PU factor.
This said, I too vote for K! Had a failed J pouch for woefully too long and an external bag for a year. This works for me, not limiting nor do I think about it, although plan my day accordingly.
Great you are asking questions. Don't mean to scare you. Also, we are here to help you through the first several months post op. Keep us posted please.
In solidarity with Ukraine!!! (also some crazy toilets when I lived there.) Jan
You aren’t scaring me. This is very helpful. I really want a k pouch and am just waiting for results of a test if my surgeon and GI will recommend it to me. I’ve had an extremely rough go.
greatly respect you for understanding the pros/cons before hand. nobody can better explain how k pouch works than those of us who have one!
some good--no great--things for me: eliminated excoriating pain w malfunctioning j pouch and various ancillary problems, including weekly blockages.
what/who is your hospital/doctor? where located? I'm in Boston, where no doctor deals w k pouch. my pouch created at Cleveland clinic, dr. Dietz, who is fantastic. now go to NYC for routine exams and minor tweaks.
once you get the pouch then stay in touch with us. we can talk you through questions and possible frustrations. Sharon is the absolute best!! peace, jan
Its import to ask lots of questions. I did a lot of research on the k-pouch before I got one, including coming to this site and asking questions, it is a big decision.
I have never had to have a pouch revision. That is to say, I had a j-pouch previously that failed due to a rectovaginal fistula. Now I have a k-pouch, it has always worked fine.
I have been to the ER often for bowel obstructions which is always a hazard of having several abdominal surgeries and developing adhesions (scar tissue). Generally because I ate too much of something I probably shouldn't have been eating. A few years ago it got really bad to the point where I had cut back, or out completely, most fruits and veg, it really just wasn't worth it anymore. That is not the experience of most k-pouchers, but I have had 4 belly surgeries so more scar tissue yada yada. Also, had barbie butt done and last CT scan showed my small bowel sorta snaked down into my pelvis doing a U-turn and creating a bit of a traffic jam spot But haven't been to the ER now in 3 years since adjusting my diet (knock on wood).
My 15 year k-pouch birthday coming up in May and I can hardly believe it myself. Got my pouch at Cleveland Clinic by Dr Remzi (who is now in NY). I lived in Cleveland at the time, I now live in SC and the nearest surgeon who does k-pouches is Dr Ashburn in NC about 3-4 hours from me. Hopefully I'll never need to see her.
I made a blog back in the day (no new posts) so that family and friends could see what things were like for me. Dates on the right, got my k-pouch in 2007 so you can see what I went through and there are some G-rated pics too
hope that is helpful, good luck with your decision.
@kaydbird posted:Its import to ask lots of questions. I did a lot of research on the k-pouch before I got one, including coming to this site and asking questions, it is a big decision.
I have never had to have a pouch revision. That is to say, I had a j-pouch previously that failed due to a rectovaginal fistula. Now I have a k-pouch, it has always worked fine.
I have been to the ER often for bowel obstructions which is always a hazard of having several abdominal surgeries and developing adhesions (scar tissue). Generally because I ate too much of something I probably shouldn't have been eating. A few years ago it got really bad to the point where I had cut back, or out completely, most fruits and veg, it really just wasn't worth it anymore. That is not the experience of most k-pouchers, but I have had 4 belly surgeries so more scar tissue yada yada. Also, had barbie butt done and last CT scan showed my small bowel sorta snaked down into my pelvis doing a U-turn and creating a bit of a traffic jam spot
My 15 year k-pouch birthday coming up in May and I can hardly believe it myself. Got my pouch at Cleveland Clinic by Dr Remzi (who is now in NY). I lived in Cleveland at the time, I now live in SC and the nearest surgeon who does k-pouches is Dr Ashburn in NC about 3-4 hours from me. Hopefully I'll never need to see her.
I made a blog back in the day (no new posts) so that family and friends could see what things were like for me. Dates on the right, got my k-pouch in 2007 so you can see what I went through and there are some G-rated pics too
hope that is helpful, good luck with your decision.
Thank you! I have done a lot of research, read every study available, and obviously have spoke to my surgeon numerous times. I’ve already come across your blog in the past.
for me, I’ve already decided I want one, but it is up to the results of a recent test whether my GI and surgeon will agree my body can handle it. There is no research or literature outlining people with my condition having a kock pouch. It will be a crapshoot, so that’s why there is the debate. Depending on the results of the severity of my condition; my GI and surgeon will decide.
i hope I can get one, knowing the risks that my bowel may not handle it.