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J-Pouch ForumsK-Pouch Korner
Water tempture for irrigating
GW Guy with j pouch
Guy with j pouch Sharon, Thank you very much, The advice you offered is very valuable for me. J Guy. [ more ]
skn69 Guy, It doesn't really matter that much...I aim for room temp but whatever comes out of the tap is fine for me...(I have had to use freezing lake water and hot tap water but I would try to avoid extremes)...as for the quantity...I use a 60cc syringe but sometimes I need to irrigate up to 5-10xs during one go because things have thickened up too much in there...no rule...If things are liquidy and pour right out I don't need to at all...it all depends on what you ate, what you drank and what... [ more ]
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J-Pouch ForumsK-Pouch Korner
End plug for catheter...
J Jasmine 2
Jasmine 2 Patricia very good idea, no I never thought of a wall plug. [ more ]
skn69 Interesting thought Patricia, Unfortunately for us here in France they are not solid but full of holes...will have to check them out when back in the States! I use the protective tips that come with the syringes over the catheter tips...perfect size too and I always have fresh ones whenever I open a new syringe. Sharon [ more ]
Patricia Walker Has anyone tried wall plugs? Perfect fit, cheap, easy to wash. Always have them with my catheters and they literally act as a plug for catheters as they would for screws. [ more ]
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J-Pouch ForumsK-Pouch Korner
Persistent Sinus Tract Wound
FM Former Member
JaniceM Oh, it was called a fistulagram. Even though they did not suspect a fistula, the surgeon wanted to be sure what was going on. It was a tiny needle the tech inserted very very gently, just enough to get the tip in. I still have my spincter muscles so squeezed them to keep it in (plus he taped it cuz he knew the opening was so small and not deep) through the 5 minute test. [ more ]
Former Member Thanks Janice ! I see my doctor today & will def'ly ask for an X-ray and go from there. Even though I'd never wish these problems on anyone, it is reassuring to know I'm not alone. I may be picking your brain a tad more after I see him :-) Thanks again, Ali [ more ]
JaniceM Ask away, sure! The 2nd time, they put a balloon type them to keep a tiny bit opened while it healed. It never closed up completely even though you could barely put the tip of a q tip in it. This last time, the colorectal surgeon cleared it out and no balloon. But, it took time to heal as I was older with more health issues. But, once it did, I was so happy. No more pain or discharge. If the surgeon completely redos it, it can take several weeks to fully heal. But each week so much better. [ more ]
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J-Pouch ForumsK-Pouch Korner
No energy!
EricEric
JaniceM Eric, the percocet alone can effect your emotions. I'd switch to tylenol with codiene if you are still having some pain. And, it helps slow down the poo flow. It seems to not make me as emotional as it's not as strong. feel better. [ more ]
skn69 Eric, I could create a group thereapy session for hubbies of K pouchers! Mine has lived through me, repeated pouch surgery and menopause all at once! Talk about a Nobel prize for Zenitude in a supporting role for post-op surgical nutcases! There are nights I am sure that he wished he had either put a lock on the knife drawer or on the pharmacy cupboard!...Post op is psyco-melo-drama in our house...I am the strong one going into the surgeries, he is the wreck...coming out I am decided and... [ more ]
Eric PS - my emotions are STILL all over the place, guys aren't suppose to cry, but when I was watching the tragedy in Connecticut unfold, seeing all those poor poor families destroyed by the actions of one psycho, I fell apart, I had to shut the TV off, I just couldn't watch any more. Normally, I'd just be sad, but I would have never fell apart like I did, what the heck? What's the connection between a K pouch surgery and my wild emotions? My family doctor attributes it too years of pain,... [ more ]
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J-Pouch ForumsK-Pouch Korner
How old were you when diagnosed/surgery?
J Jasmine 2
John A UC symptoms, bleeding at 10 yo, diagnosed at 12, ileostomy at 20, KP at 33...3 revisions, 2 valve repairs, multiple adhesion lyses, surgery free for past 16 years... [ more ]
JaniceM UC symptoms begin at 7yr. (always had stomach aches, cramps etc. even before). Bleeding at 12yr. UC official diagnosed a week later. Ileostomy at 21. Kock pouch at 22. Etc. Chronic inflammation continued but all crohns tests neg. (but i have autoimmune issues) Chronic gastritis and GI feels it's UC related. [ more ]
Donna H Sharon, you are truly amazing!!! [ more ]
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J-Pouch ForumsK-Pouch Korner
Leaking again!
EricEric
JaniceM I'm sorry Eric. Remember Tiffany had same issues with KP from Dr Cohen. She had it revised and it still leaked so she had it converted back to perm ostomy. I know that is not what you want to hear or have, but your health is the most important. You have a great relationship and otherwise happy life right? Why go through all this over and over. I understand, beleive me. But, unless you can get to the CC in the states, I'm not convinced Dr Cohen should attempt it again as you have gone through... [ more ]
Martin73 Hi Eric, I understand that you are frustrated and I wish you that Dr. Cohen will find a solution for your problem. I had many problems with my kock-pouch - it worked perfectly only a few weeks. Now I am living again with an ileostomy and I am happy. Best Regards Martin [ more ]
skn69 Eric, What did Dr C say? Please let us know. Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
stoma recedes
D dpol
skn69 Yup, Kind of like it is pulling in on itself and sinking a bit...sometimes I think that it is dehydration others that it is just dried out from lack of lube...I guess that it is just the way it is. Try to intubate a bit more often so that it does not overfill. Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
Silly question
GW Guy with j pouch
Eric Not a silly question at all! I'm just going through it. On June 19th, I had my j pouch and rectum completely removed, and had a k pouch put in. And YES, the rectal pain, which was so bad I was in tears, is completely gone! I do however, get phantom rectal pains, sounds weird, but every once in a while, I'll get a jolt of pain as if my rectum was still there, it feels so strange, but then I remember I have no rectum (YES! The aliens will not be able to probe me, yahoo! Lol!). My current issue... [ more ]
skn69 Guy, Almost all pain in the rectal/anal region is gone but you can get phantom pains for years...kind of a pressure feeling that something is still there or like you need to 'go'...occasional pain is possible but not usual. Sharon [ more ]
Jasmine 2 If you are having cuffitis, you should have your rectal stump removed. If you have Crohn's Disease, a Kock Pouch usually isn't an option unless it only affects the large colon area. In my opinion, that is one good thing about the Kock Pouch you don't have the rectal stump for UC to return in. [ more ]
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J-Pouch ForumsK-Pouch Korner
Fluid Discharge
WA Wendy Anderson
Patricia Walker After years of working out the problem of clear fluid I have now proved for me it is any form of fats in my diet. I know I do have gallstones which were found by accident following a scan. Veg etc., pasta and rice gives me no problems re this fluid. [ more ]
vanessavy When I am in a state that I have an allergy issue it is as if a swimming pool comes out of me. When I visit Florida where I have no allergies I don't even need to use a stoma cover. I am in the DC area and I am not as watery but in Dallas it was horrible. I mentioned allergies and doctors looked at me weird. I think they are all idiots some times. anyway, no allergy medicine in the world would help for that even though I tried. Just something to factor in. Ps. Probiotics mess me up! [ more ]
grandma64 It's been 9 days since I stopped the probiotics and the fluid that was coming out has reduced a lot, I do believe the probiotics was the cause. grandma64 [ more ]
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J-Pouch ForumsK-Pouch Korner
Catheter without side holes
GW Guy with j pouch
vanessavy There is a book on amazon you can buy called "Tips and Tricks of the BCIR. Colitis Be gone". A guy wrote a small book on basically that. He talks about how he makes his own catheters. I am good with mine, I boil mine and bend them the way I need and the holes are smoother as well. [ more ]
Adroen Ooooh naso-gastric tube Sharon.... memories I could do without there. lol Good on you for getting creative there GuywJP. [ more ]
Guy with j pouch Hi, all, I made one myself, and it works well. Thought to share with you here. I used the other side of the catheter, and used the finest sandpaper (file) I can find to sad off te rough edge of it... [ more ]
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J-Pouch ForumsK-Pouch Korner
Bcir and evac
amosamos
vanessavy Rare I have a real runny output. If I had a jpouch I most likely would have full formed poop! Anyway, I push my ab muscles like I was taking a normal dump with a colon. [ more ]
grandma64 Hi Amos, I agree with Sharon. I have a kock pouch and I too tighten my stomach muscles to help empty my pouch. The muscles squeeze the pouch and helps with the evacuation! It's been this way for me since day one, no problem! grandma64 [ more ]
skn69 Amos, That is not a problem but a normal way of evacuating the pouch as far as I am concerned...unless my output is pure liquid in which case it just pours out...I contract my abdominal muscles to put pressure on the pouch and 'squeeze it'...as long as your consistency is good it shouldn't be a big problem. Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
Woke up this morning covered in poop!
EricEric
vanessavy usually a leak is a fistula or pouchitis. I never heard of an over full pouch leaking. Puking yes since the poop and food has no where to go. I have gone a very long time with not emptying, been full and even passed out and slept the whole night. I don't do that often but **** happens. [ more ]
skn69 Not a bad idea FRH. While still living in Canada I used to use papaya enzymes with meals and I think that it helped a lot back then...haven't tried it in years...but great idea. Pineapple works too after meals for me (fresh, just chew and spit out the fiber!)... Dixie: Yes, it is very possible...it happens to me every so often, thankfully not too often and always remindes me and my digestive tract are far from perfect! Scary thought though...its all a crap shoot (sorry for the play on... [ more ]
Dixie from Saskatchewan Hi Eric, Just wondering how you are doing now? My, but you have been through so much stress the last year & it's understandable why you would freak out having something like that happen. A couple of times I've discovered a small amount of fecal matter on my dressing & I'm hoping like hell as well that nothing is seriously wrong. This never happened with my first Kock pouch, but has happened a few times with my second Kock pouch. Something I've noticed is that the few times that it... [ more ]
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J-Pouch ForumsK-Pouch Korner
Leakage
skn69skn69
skn69 Adroen, The flu or whatever it was is finally over (I gave it to my hubby!) so at least I am not having all of those horrible symptoms...I got myself back on track by eating....hot pepper spice....yup, does it every time for me. (not reccomending this to anyone else!)...hot chili peppers are a well known for their anti-bacterial properties...When I crave them I know that something is up. I had rice with hot pepper sauce 2 days in a row and by day 3 it was over...leaking much less, just... [ more ]
Adroen No news is good news right? Seriously though, have you had any improvement sharon? /crosses fingers [ more ]
skn69 Bodoni, If I leave the tube in, I leak around the tube (!). The valve is damaged in such a way that the tube is not held in tightly so if it plugs a bit or I move around it just pours out around it. Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
Second KPouch/JPouch Success?
A Adroen
Adroen Thanks Leslie and Dixie. That's reassuring for sure. I have been taking the sublingual B12 hoping that they'd been helping, but never quite sure. Well, just had blood tests done the other day, and the B12 levels came back quite a bit higher than they should have been. Doc told me to cut down on the tablets a little from now on. I think he doubted they'd work as good as a shot from memory of when I mentioned I was going to start using them, so he was surprised they were working so well too. [ more ]
lesrich1 Hi Dixie! Somewhere I read that people with bowel surgeries could become B12 deficient. So, when it was time for my annual blood work, I asked my doctor to have my levels checked. B12 testing is not routine. The results came back borderline deficient and I've been taking monthly shots for 3 or 4 years.My doctor does not feel the under the tongue is as effective so her nurse and I have a very nice relationship. I did ask her now that my levels are normal, what would happen if I stopped the... [ more ]
Dixie from Saskatchewan I'm on my second Kock pouch. Originally had an ileostomy, then had it converted to a Kock pouch in June 2004. Had revisions done in February 2009 & September 2010. Then in February 2011 I was still having problems, so my first Kock pouch was taken out in its entirety & a second Kock pouch constructed. I had a revision to my second Kock pouch done in November 2011. After my last surgery I asked my surgeon if I had enough intestine to build another Kock pouch if necessary in the future... [ more ]
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J-Pouch ForumsK-Pouch Korner
New k-pouch
Art MomArt Mom
lesrich1 I had a incision that opened at the top and bottom and a old stoma site that had to close on its own. My friend is a visiting nurse who helped me along after I returned from CC with all the packing stuff. She stressed to me getting in the shower and letting the water run on the wound. It won't hurt it. As far as adhesives, there are different tapes available, if that's what you need remover for. I can only use 3M paper tape because it is least caustic to my skin. The wound does heal,... [ more ]
skn69 Art Mom, The best (and cheapest) adhesive remover in the world? Baby oil. Put a few drops on a cotton or gauze pad and rub gently...comes off in 5secs...as for electrolytes? I didn't need much because a) I am a very good and varied drinker: herb teas, diluted juices, homemade lemonaide, seltzer water with lemon, shweps(sp) tonic water (great for those leg cramps)...plus I had a veggie juicer and loved carrot/apple or carrot anything (add herbs for extra vitamins)...and B) I took a good multi... [ more ]
Art Mom Thank you all! Rosie, yes, she had her rectum removed. She has said this is very uncomfortable, leaking, pain....So good to hear this all gets better. How did you all do with pain meds? Luckily, we have been able to get all meds in liquid form. What do you all do about keeping electrolytes in balance? I read in another discussion that some of you purchase salt tablets from REI (have magnesium, potassium...also). Any suggestion for adhesive remover other that the type bought from ostemy... [ more ]
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J-Pouch ForumsK-Pouch Korner
Surgery
R rockyg
Rosie128 Yay! My prayers are with you that time will fly by for you and your surgery in February will be a success! [ more ]
Dixie from Saskatchewan So happy to learn Dr. Cohen will be giving you another Kock Pouch. Best wishes for a successful outcome this time! [ more ]
skn69 Congratulations!!!!! Now, keep yourself as healthy as possible in the meantime...walk, eat as healthy as possible and if you smoke...time to quit. Good luck Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
"STONES" IN K-POUCH
LE little eagle
little eagle The saga with my stones is still going on after three had been removed through stoma by GI doctor. At the next attempt he could not get the other two. Never got a real answer what the stones were made of but he said something like calcification. I think Vitamins have something to do with that. I now take only capsules. He referred me to Health and Nutrition Person, which I have not gone to because I am in Puerto Vallarta, Mex. and without pain at the time. My GI doctor also referred me to a... [ more ]
skn69 Amazing! I am still shocked at all the things that can happen to a k pouch (or J?)...I remember thinking that once I got my pouch that my life would finally 'start' and that would be it...now I realise that it is just one long journey down the road that most others never take. Sharon [ more ]
marz Yes, kaydbird, that is who I will see. Waiting for Dr. Shen to schedule him after I have another pouch xray (the day before)! I wonder if I will have to spend the night in the hospital. Sharon, I will definitely have the stones analyzed and I will post the results. It may be 3 weeks before I can get in. I am starting to get paranoid about taking the PB 8 capsules. I took them for 8 years, now I think I may open the capsules until I find out about the stones. Dr. Shen said the outside of the... [ more ]
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J-Pouch ForumsK-Pouch Korner
Why Are Nsaids Bad?
D dpol
Adroen Hey Sharon, I do feel a bit fuzzy too, and would rather not have to take anything, but they are helping me slow the bowel down so I have to use them at the moment. I can understand from what you say why you'd be sick of having to use them though. I got lucky in high school, as I hadn't got to the sick stage yet... take me back there anytime time machine. lol [ more ]
Donna H When I used to have UC and a period, I would get severe mentrual cramps and take lots of Ibuprofen for the pain. Well, I always thought that my colitis got so much worse during my period but it actually was the NSAID's that was the culprit. I do take an occasional one when I have back or joint pain and it seems that one or two will do no harm to a pouch. Just be sure you don't overdue it. [ more ]
Jasmine 2 NSAIDs, Vioxx, and Celebrex are upsetting to the GI tract. I can't take these on a regular basis, very rarely yes, but they irritate my GI tract. It took years for the GI doctors to figure this out, I used to take ibuprofen daily before I figured out it was irritating my GI tract. I do take one aspirin a day, as I am 60 years old which I've had no trouble with. [ more ]
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J-Pouch ForumsK-Pouch Korner
Sleep Problems
D dpol
Jasmine 2 At 34 1/2 years out with my Kock Pouch, I sleep all night long and don't worry about it at all. I can easily go 12 hours at night. In the beginning, I couldn't do that though. It all takes time, just stretch that pouch out like you are told in the beginning. [ more ]
vanessavy I usually go to bed around midnight or 1 am. If I am working the next day I get up at 7:30 am. I usually go to the bathroom around 11 am. I have been on Ativan for 5 years for sleeping issues due to anxiety and IC. I sometimes wake up if I am on my back because then there is to much movement in my pouch but otherwise I sleep through the night good. [ more ]
ke353 Well, I have an ostomy now but am wanting to switch over to a k-pouch for many reasons, but one being sleeping through the night. Most people seem to say the sleep better with their k-pouch than with an ostomy or j-pouch (probably if it's failing) and definitely better than with IBD. I usually get up once to empty my bag, not because I need to, but because I wake up and think "might as well" since it's more comfortable to try to fall back asleep with an empty bag. I would think a k-pouch... [ more ]
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J-Pouch ForumsK-Pouch Korner
Watermelon
vanessavyvanessavy
Jasmine 2 Watermelon gives me intestinal blockages, so I don't eat it. I love it, but it isn't worth it to me. It's the only thing, I can't have. I eat pistachios too, love them! I also love sunflower seeds....my 2 favorites. [ more ]
vanessavy I eat pistachios but not almonds, almonds give me great gas. Pistachios I can eat butt loads of the things. Meat skins I eat. I was nervous until I saw a fellow BCIR buddy eating chicken wings. All down hill since then! Stomach acid eats the meat skins unlike skins on fruits. [ more ]
ke353 I love watermelon and don't really want to give it up if/when I get a k-pouch! It definitely bulks things up, which is why I eat before going out! I'm not so sure it would cause a blockage though, unless you don't chew too well or eat the whiter part. Honestly, so far nothing the nurses told me to stay away from has caused me any problems. I haven't tried meat skins or nuts though. [ more ]
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J-Pouch ForumsK-Pouch Korner
Doing sit-ups w/ a K-pouch ?
FM Former Member
vanessavy I do sit ups and use a Rogue Abmat. Supports the lower back. I only do full sit ups, never crunches. [ more ]
Former Member Wow, you all are very impressive and very encouraging for sure. Thank you all very much for replying. I'm gonna start out w/ mini crunches and go from there. Given the fact that my stomach looks like a road map of the NYC subways with having had several abdominal incisions, not to mention of course the "bandaid", I doubt a bikini will ever grace this bod but at least I'll feel more confident now in trying to strengthen those muscles w/o causing problems to the system. Thanks Again, Ali [ more ]
JaniceM While sitting anywhere (driving, watching tv, on the computer, etc.) you can squeeze your ab muscles and release and squeeze and release as much as tolerated. This is like a sit up but not actually crunching! [ more ]
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J-Pouch ForumsK-Pouch Korner
Stones
D dpol
marz ❤️
kaydbird My stones were sent to the lab and were 90% calcium. but drs said no evidence to suggest dietary changes would prevent them from happening, and I have to take calcium (I eat the chocolate chews) because of osteopenia.... For some people they are pills though. I had heard that before though so all my vitamins are chewables just in case! [ more ]
skn69 I'd love to know what they are and where they come from...could they be remnants of some undigested pills or mineral accumulations from foods we eat? Bile? Very strange. If you ever find out, please let us know. By the way, have they grown or do they stay the same size? Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
Question about Sugar?
grandma64grandma64
Jasmine 2 I think if you have a yeast problem, then sugar would be an issue. I personally don't have issues with sugar and never have. [ more ]
grandma64 So all 3 repairs were for the same thing? [ more ]
JaniceM I had valve repairs early on due to valve constriction and couldn't get cath inserted. I was never incontinent, though. I haven't had a repair since 1985 and hopefully praying never again! [ more ]
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J-Pouch ForumsK-Pouch Korner
second kpouch surgery
R rockyg
rockyg Thanks for asking dixie i see doctor Cohen on Oct..30 will let you know. [ more ]
Dixie from Saskatchewan Hi Rocky, Just wondering whether or not you met with Dr. Cohen & if he can give you another Kock pouch?? [ more ]
lesrich1 I had a Kock;1979 a standard ileo 2003 and a second Kock 2006. I am fine. If Dr. Cohen did your first and second surgeries then he has your surgical records and will know what shape you are in. He will not put you at risk. It's not in your best interest or his! [ more ]
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J-Pouch ForumsK-Pouch Korner
Pouch opening, not stoma, too small
D dpol
dpol If I start having trouble again, I will give it a try. [ more ]
skn69 You may want to try using a strait one and see if it is easier to work with now that you have a narrowing???? I used a Medena 30 curved for 29yrs and have had to switch to a strait cath since my recent problems...seems to work in my case...it may be worth the try... Sharon [ more ]
dpol I use the 29fr Weber and Judd that is curved. Started using it at the Mayo and have used it ever since. It is easy on my body. [ more ]
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J-Pouch ForumsK-Pouch Korner
Any NYC Pouchers on here?
vanessavyvanessavy
vanessavy I love a good sense of humor because mine is pretty dark and sarcastic [ more ]
CTBarrister By the ways, Vanessavy, the very first K pouch done in the USA was done by none other than Dr. Irwin Gelernt, mentor to both Dr. Gorfine and Bauer in the 1980s and 1990s. Dr. Gelernt studied under the famed Dr. Nils Koch in Sweden (inventor of K Pouch) and then did the very 1st K Pouch surgery in the USA at Mount Sinai in 1970. Dr. Gelernt, assisted by Dr. Gorfine, did my colectomy in 1992 and my takedown. Unfortunately, Dr. Gelernt passed away in 1996 at age 64. The group later became known... [ more ]
CTBarrister I am/was a patient of Dr. Bauer and Dr. Gorfine's group and I would second the opinion on them. Dr. Gorfine assisted on my two original surgeries in 1992 and also did J Pouch revisions on me in 1998 and 2000. He is a skilled surgeon and also has an interesting sense of humor, once comparing the J Pouch to the British car Jaguar, saying it is like a "really nice car but sometimes needs to spend some time in the shop for maintainence and repair." Their website: ... [ more ]
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J-Pouch ForumsK-Pouch Korner
pregnancy with a k pouch
Rosie128Rosie128
skn69 Thanks Sweetie, I would have loved to adopt...but the Gods of adoption were never with me...a sick single mother was not top of their list for cadidates...I always expected it to happen naturally and every time that I got pregnant I was filled with a soaring hope that this time it would work...it was just not in my destiny but I did love fostering other people's kids and had a blast being the 'fairy God-mother' to every single one of my friends' kids...still am plus I have my step-daughter's... [ more ]
Eric I can't give you advice, but I can give you encouragement! Women are indeed the stronger sex! I can't imagine giving birth, let alone with a K pouch, but I was just googling it, and from what I've read, it is quite possible. @ Sharon, I'm so sorry sweetheart that you miscarried, but as I've learned, some things in life, beyond our control, were just not meant to be, but if it helps, you would make a wonderful mother! For those of you who can't seem to carry to term, ever considered adoption? [ more ]
Rosie128 Thanks everyone for the replies. I was just wondering what my options were. If anyone else has anything to add.....it would be greatly appreciated! Rosie [ more ]
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J-Pouch ForumsK-Pouch Korner
opening to pouch
D dpol
dpol Thanks you, but my problem is not the stoma being too small, it is fine. My problem is that the actual opening to my pouch that the catheter goes through after getting past the valve was too small. That is why I could not intubate for four months and I had to have a tube in all the time. For me, they finally dialated the opening and it works fine for now, they just do not know for how long before it gets too small again. [ more ]
vanessavy Yes this guy makes the plugs. his wife got a BCIR and he started to make them and they go in our kits. They are handy. He makes a 30 french size and a smaller one in case your stoma is shrunk more, for emergencies. I carry one in my kit. I usually tape a pad over it and keep it in over night if I think I need it in but haven't used it in maybe 6 months now. Wayne Jacks MWJacks@aol.com For the binkies/Stoma plugs [ more ]
skn69 I agree with Rosie that prevention is better than the fix...I had a sunk stoma and it closed over repeatedly...it was amazing the speed with which it would heal over and close up...I had to cut it open daily to get the tube in...used a modified pacifier for a while but in may case, being that the stoma had sunk it wasn't enough...the z plasty is not perfect nor much fun to be perfectly honest so if you can avoid it...do. I have silver nitrate sticks that I usually use to cauterize any... [ more ]
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J-Pouch ForumsK-Pouch Korner
Urinary urgency
EricEric
vanessavy I have IC so my my bladder is always a mess. If my pouch is full of liquid my bladder spasms and can't hold it. I pee a lot though and often. I consulted with my surgeon about repositioning my pouch so it takes pressure off the bladder since IC makes it a double whammy and pure living hell every day. I can move it but I just can't do surgery again. [ more ]
skn69 Yup, I have a low pouch that is back to back with my bladder so one functions with the other and I get this weird thing going that I have to pee but can't until I release some of the pressure on the pouch but can't empty the pouch until I pee...kinda difficult but I manage...but definetly one pushes up against the other and causes pressure on each.. Welcome to the wild and wacky world of k pouches! Sharon [ more ]
Adroen Hey Eric, I find even with the disconnected Jpouch I've been having problems with that. /shrug Not sure what part is causing the issue, but it started when the pouch got made...that's for sure. Sometimes I feel the problem might be around where the prostrate might sit(at least I think it's where it sits lol) if you know what I mean and it's creating the problem? If you find out what's the cause for you, be sure to post back on it please. Ad [ more ]
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J-Pouch ForumsK-Pouch Korner
Stoma covering?
EricEric
LadyTay97 ❤️
Dixie from Saskatchewan Eric - I decided to try the Gerber Washable NUK Nursing Pads & was surprised at how well they worked. I used a new one each day & used a folded up piece of toilet paper inside of them, which I changed about every hour. A tight pair of undies held them in place pretty good. I washed them using a cold water wash soap specifically for delicates & they came out very clean. Would definitely be a good replacement for the regular stoma covers if one was low on supplies or wanted to save... [ more ]
skn69 Eric, A stoma is supposed to have mucous, just like your mouth is supposed to have saliva, it is what preserves the tissues from drying out, cracking and bleeding...not having any mucous is a bad thing (think dry-mouth)...having just enough to keep your stoma moist at all times or a bit more is good....too much or not enough is less good but not a sign of something being wrong...it is exactly the same as your mouth..you put certain foods or spices into it and you get more mucous (spicy,... [ more ]
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J-Pouch ForumsK-Pouch Korner
Traveling with a K pouch?
EricEric
skn69 I'm blushing guys! Thanks for the vote of confidence though...always happy to be of help...by the way, Eric, which hospital do you work at again? I may need a mini favour for a very sick kid. Sharon [ more ]
Eric Sharon is amazing, isn't she? (cute too!), yes, Dr Cohen was able to use most of my old j pouch to form the K pouch, save a lot of time he said. I'm so glad I did it, no more butt burn (in my case, it was more like butt in fire!)!!! It's definitely worth it! Cheers! Eric [ more ]
Donna H Thanks, Sharon, it makes sense. I also admire your compassion and the personal knowledge you give to so many people on this site. It could be so lonely for so many if the support was not available as it is on this site. I remember when i first got my j-pouch in 1995. The CCFA had a back page with codes where you could write to people. The letters would go to CCFA headquarters and then they were forwarded to the person you addressed it to. It took weeks for you to be connected to a buddy but... [ more ]
See all 19 replies...
J-Pouch ForumsK-Pouch Korner
Saw the doc today
EricEric
skn69 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... [ more ]
Dixie from Saskatchewan 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... [ more ]
skn69 Vanessa, I said valve redo...not pouch. Sharon [ more ]
See all 15 replies...
J-Pouch ForumsK-Pouch Korner
Whod'a thunk?
skn69skn69
vanessavy It's a small world. One of my family members, very refined man fom Guatemala was having a conversation with a long time friend. These men are about 70 or so give or take. And my family member mentioned to his friend I was getting a BCIR done and my story, etc. His friend lifted up his shirt and pointed to his stoma and said " I have had the BCIR for 20 years!" I found that out right when I was having surgery. Makes me wonder who has what now when I talk to them since it's never always a... [ more ]
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J-Pouch ForumsK-Pouch Korner
Medina Caths in US Not inc. Edgepark
jeanniejeannie
jeannie Thank you John and Bodoni. Torbot the cost is only 8.00 and shipping is cheaper than Edgepark. Ordered 25 for cash instead of 1 per month which medicare allows. Jeanne in Placerville, CA [ more ]
jeannie Thanks for responses I will order right now. Vanessa I am frustrated because they will not take my email order because I am not buying the same things I bought from the last order. Tired of trying. Also I am a medicare paid patient and that may have something to do with it. Have to have calls made to a MD I will straighten it out later but right now I need them immediately Thanks , Jeanne [ more ]
John A I use Byram Health Care; no problems getting Medinas...(http://www.byramhealthcare.com/) [ more ]
See all 5 replies...
J-Pouch ForumsK-Pouch Korner
antibiotic resistant enteric bacteria
JA John A
John A Dr. Shen is terrific. I really hope he can help you, Vanessa. Thank you for sharing. [ more ]
vanessavy Well I have had 2 pouch scopes that ruled out pouchitis. My pouch looks great. Bacteria overgrowth from what I read has similar symptoms. My stool turns very liquidy after I go off antibiotics for a few weeks and the smell is so bad the whole house smells like a week old garbage. I can't hold anything usually for an hour or two and I get a lot of gas. I get gas even after I irrigate and I know nothing is in there. I can also feel poop sort of spit out into my pouch instead of a nice flow. [ more ]
John A Hi Vanessa. how do you know its small intestine overgrowth; what are the symptoms? I find I have to drain frequently and feel great urgency almost as soon as I eat something... thanks --john [ more ]
See all 15 replies...
J-Pouch ForumsK-Pouch Korner
Kpouch-ileostomy-kpouch again?
FM Former Member
John A I echo what Sharon has to say. I too have been through an end ileostomy, conversion to a kp, multiple revisions and multiple valve re-dos (lost count..), plus many adhesional lyses and a few surgical hernia repairs. The good and the bad, but Sharon said it well, keep your eye on the prize, have a great surgeon and go for it. I would never consider going back... john [ more ]
Jasmine 2 You have enough small intestine to make 2 kock pouches. Maybe you need a different surgeon or maybe the technique is better than it was the last time you had it done. Just make sure you are talking to a surgeon well versed in the Kock Pouch and go from there. [ more ]
Former Member Thank you Vanessa for your response. I know I have a lot of intestines left so I'm not too worried about short bowel syndrome. More afraid of the unknown than anything else. [ more ]
See all 10 replies...
J-Pouch ForumsK-Pouch Korner
Stoma/intestine swelling?
EricEric
Jasmine 2 When you have your catheter left in...be careful. I wouldn't go bike riding or anything stenuous, you are trying to rest the area. You don't want to irritate or do any damage in the valve or pouch. [ more ]
Jasmine 2 Eric, I use a strip of guaze and wrap it around my hips and tape it in about 3 areas on my hips to keep it level with the stoma. Then I tie the guaze to the catheter, I bend the catheter so the end is held in place by the gauze...in a U shape. I use a golf tee or dowel to block the end of the catheter so it doesn't leak, and can be removed to empty my pouch. I have no trouble keeping the catheter in this way. Your valve being closed tight and harder to get the catheter in later in the day,... [ more ]
vanessavy Welcome to my daily hell as I call it. Your story is me every time I intubate. Tight stoma, my valve is on an angle. To keep the tube in it is simple. You have to form a loop like a ribbon, think cancer ribbon, the loop goes under the tube and then the ends go over and secure to the skin that prevents it being forced out. then secure another piece of tape over it. [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Emptying
K ke353
vanessavy When I eat salads I usually have diced up ham or chicken, blue cheese, romaine lettuce, sometimes peeled cucumber, pees and tomato. I usually have some cold pasta in it as well since pasta turns into pure liquid for me. I pull the skins off of everything, it is just to much of a pain to deal with. Only thing is with salads I make sure the leafy parts are diced up or shredded, that way if I eat to fast and don't chew it all the way it still comes out good. I make most of my salads in my... [ more ]
ke353 I can already see how veggie burgers can be an issue and I gave up peels and mushrooms when I got my ostomy and it's no loss to me! I don't eat red meat and I've been trying to eat more fish too so this is all good news to me. As long as I can still eat salads I'm good. Thanks! [ more ]
skn69 Ke, The K pouch, like the J pouch takes time to grow and mature...in the begining you have to drain it ever 4 hrs and then slowly as it expands and grows you can push off the time until you reach about every 6-8 hrs except before or after a strenuous activity or bed when it is advised to empty before sleep or when you wake up...I have a different routine, my pouch is 33ys old and has had some trouble along the way so I intubate when I get up, before every meal and before bedtime, about 5-6xs... [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
back to work
Rosie128Rosie128
vanessavy I heard a man in the men's bathroom next door to the last job I did recently. Sounded like his colon exploded. I never sound like that. I think we think we are loud but man , I forgot how loud colons are! [ more ]
dpol Teaching is a great and very important profession! Remember people without pouches make noise and can be very fragant in the restroom. Enjoy your wonderful job! [ more ]
skn69 Good luck Rosie, Congratulation on going back! Have fun with the kiddies! Sharon [ more ]
See all 3 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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