I have no idea what happened, but after my last surgery (4th revision) to repair my Koch pouch in November 2011 I've had constant fecal matter leakage, as well as gas leakage a couple of times, when my pouch was full. I had basically decided I didn't want any more surgery & had decided to put up with the leakage, even though it was a nuisance. Suddenly about four or five months ago the fecal matter leakage stopped & my pouch has been working perfectly!! I did several things about that time, so I don't know if maybe one of these things contributed to my pouch working properly. I switched from using a Marlen catheter to a Medina, quit eating a bag or two of junk food (cheezies & chips) everyday & started taking a probiotic everyday. I've given it some time now as I didn't want to get too excited about my good fortune, but I'm thrilled!!! Never give up hope! Anyone have any ideas about this, or have a similar thing happen to them? - Dixie
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The bullet tip catheter makes my pouch and valve do way better. The stiff 3 hole makes me spit up mucus and also makes my valve hurt. I find it easier on the whole system.
Hey, I had some weird spells over the past 2 years and lately I am good so who knows with these things!
Hey, I had some weird spells over the past 2 years and lately I am good so who knows with these things!
I started taking a probiotic 6 weeks ago and I have been doing a little better too. As a sidepoint, my poop is a lot less smelly.
Probiotics can do wonderful things Dpol, I like my pouch when I take them...hmmm, maybe it is time to start again.
Dixie,
Wonderful news...it could be that you had a twist of some sort that straitened itself out and there is no longer any stress on the valve (it can get 'pulled'and make the valve pop open if the pouch is slightly twisted or low and once it straitens out the problem goes away...But it can also be what you are or are not eating...sound like things are going well and I wouldn't mess with success! Congratulations.
Sharon
Dixie,
Wonderful news...it could be that you had a twist of some sort that straitened itself out and there is no longer any stress on the valve (it can get 'pulled'and make the valve pop open if the pouch is slightly twisted or low and once it straitens out the problem goes away...But it can also be what you are or are not eating...sound like things are going well and I wouldn't mess with success! Congratulations.
Sharon
Thanks, Sharon. How are you doing now? - Dixie
Funny thing, I am sort of getting used to the 'new me' regarding the pouch...I know its quirks, the fact that the pouch is slightly rotated and twisted so I need to get over a 'hump' to get the tube in...Most of the time I get it on the 1st try and then on occasion not...I can't let it over fill or fill with gas or it blocks shut but other than that, things are good...I spent 3 days out of town at a university colloquim and it really behaved nicely but then again I avoided 'problem foods' and stuck to our good old basics (mashed potatoes, yoghurt, chicken...)
I can't complain, I have lived through much, much worse and all considering I will take it if this is all that I can get.
How is life over there? Has the winter started in ernest for you guys? How is your general health?
Have you told Dr C that things are functionning? He might have some ideas but like I said, you don't look a gift horse in the mouth (stoma?)..
Hugs from way out here.
Sharon
I can't complain, I have lived through much, much worse and all considering I will take it if this is all that I can get.
How is life over there? Has the winter started in ernest for you guys? How is your general health?
Have you told Dr C that things are functionning? He might have some ideas but like I said, you don't look a gift horse in the mouth (stoma?)..
Hugs from way out here.
Sharon
Man I wish probitocs helped me, like you guys. If I take them it smells like the most rancid stuff is coming out of me. I wish it helped the smell, I bomb my bathroom out all the time since I am not on antibiotics.
Probiotics (tried many different kinds) do the same thing to me Vanessa. Horrible output.
Have you tried Acidophilus, it's a probiotic. I wonder why a probiotic affects you that way. Strange, maybe you are already in bacteria good and bad balance.
Dixie, I'm so glad to hear your valve is working properly. I pray you have continued success!
Hi Lois,
Thanks for your well wishes. I'm so sorry to hear of all the troubles you've been having. I can't imagine the pain you went through a week ago! It's such a scary situation for all of us knowing that there are so few doctors available to help us with our Koch pouches.
I tried Acidophilus, but it didn't do anything for me. The type of probiotic I've been taking is Swiss Natural Probiotics. I don't know if that's why my pouch is functioning better now or not, but I'm keeping on taking it. My pouch is working exactly the same as Sharon's. I can get my catheter in just fine unless it's too full. Then I have a very difficult time trying to get the catheter in. It seems like my valve moves at times. I have to aim my catheter at different angles & I've even got some intubation stylets I've been using the last while just to find the channel into my pouch. Like you, I seem to hit a wall as if my valve is bent at times. I've got an appointment with my surgeon in Toronto next month for tests to see how my pouch & valve looks.
I'm hoping the best for you. Take care!
- Dixie
Thanks for your well wishes. I'm so sorry to hear of all the troubles you've been having. I can't imagine the pain you went through a week ago! It's such a scary situation for all of us knowing that there are so few doctors available to help us with our Koch pouches.
I tried Acidophilus, but it didn't do anything for me. The type of probiotic I've been taking is Swiss Natural Probiotics. I don't know if that's why my pouch is functioning better now or not, but I'm keeping on taking it. My pouch is working exactly the same as Sharon's. I can get my catheter in just fine unless it's too full. Then I have a very difficult time trying to get the catheter in. It seems like my valve moves at times. I have to aim my catheter at different angles & I've even got some intubation stylets I've been using the last while just to find the channel into my pouch. Like you, I seem to hit a wall as if my valve is bent at times. I've got an appointment with my surgeon in Toronto next month for tests to see how my pouch & valve looks.
I'm hoping the best for you. Take care!
- Dixie
I have a t valve ostomy and have some problems with leakage and gas it has got better but not completely stopped.good luck with yours.
Mike
Mike
Probiotics are great, but if the wrong kind are taken or too much, they can cause sever gas which can also smell pretty bad. I find that if I place the end of the long catheter in the water when I let out gas, the water absorbs the smell. There is also a great product on the market, Poop Pourri and it works real well. I take anti-gas pills and they help a lot more than the probiotics did for basic discomfort.