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J-Pouch ForumsK-Pouch Korner
Spasms in or near K-pouch
B Bodoni
JLH hi--i've had obstructions, which are accompanied with pain, bloating, nausea (when very bad.) has your doctor considered adhesions, caused by surgeries? who do you see in nyc? i go to dr. kiran. it might be worth it to have your electrolytes checked. certainly easier than a scan. i've had imbalances and don't recall spasms related to them, but everybody is different. when were you last scoped? do you get them on an annual basis? it is always discomforting to not know what is causing a... [ more ]
Bodoni I wonder if any kinds of meds could cause spasms in or near my K-pouch? [ more ]
CJB Thanks for the partial obstruction tip. I stopped taking metamucil a few weeks ago, and that helped a tiny bit. But how long would a partial obstruction last? Not weeks, right? Maybe the problem can mysteriously disappear, just as it appeared. That would be fine with me. I might ask for a CT scan also. C-jay [ more ]
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J-Pouch ForumsK-Pouch Korner
digestion times
K kaydbird
Patricia Walker Yes a hair analysis reveals so much. I became very ill around the age of 35. ME type symptoms. No help from GPs. Got myself to York here and saw alternative doctor. Brilliant. Yes is showed up magnesium deficiency, selenium and chromium levels so low. very strict healthy diet which I still remember to keep to. It does work. [ more ]
skn69 Initially my surgeon said to me that if I am gaining weight than I am absorbing...That was the 70's and we have come a long way since. I used to juice including major mineral-rich foods like parsley, cilantro and other herbs now I just blend...don't bother throwing away all of the goodness (and it slows digestion to allow me to absorb a bit more). Some things are absorbed through our stomachs (not many) like sugars, alcohol and certain meds but most foods absorb through our small bowels. [ more ]
Patricia Walker Yes I feel lack of absorption compromises our ability to maintain a balanced benefit from many of out diets. I take a good quality multi vit and mineral tablet each day. [ more ]
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J-Pouch ForumsK-Pouch Korner
Medicare insurance covers ostomy supplies!!
J JLH
ET_RN ❤️
JenJen I am using edgepark and have been since surgery. I tried a couple companies and they were actually the best of the bunch. I do remember doing some back and forth at the beginning, but eventually I got to the right customer service agent. I think I had to push to talk to someone familiar with Gastro supplies and not urology or general... and I definitely remember having had one of the helpful CC stoma nurses call them as well. Now things work like clockwork... I haven’t been able to get them... [ more ]
Shavon I wanted to use coconut oil but my nurses said not to use any type of oils on/in the tubes or stoma. I’ll try Walmart tomorrow. [ more ]
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J-Pouch ForumsK-Pouch Korner
K-Pouch Mucosal Prolapse
MJ0917MJ0917
skn69 Ok, I can tacle all of this: 1. it may be 'fixed' but the tissue of the valve/stoma may have stretched out due to the bend or curve that you previously had and that may cause a turtle-neck effect meaning that you have an extra-long valve now and some of it just sticks out...no leakage or air or stuff other than post-intubation (a couple of drops is normal) then you are fine... 2. Stinging or burning may just be temporary...post op trauma to the zone...you don't say where it stings or burns. [ more ]
JLH that was the fix i thought i was going in for....... i await a call from nurse and/or doc. another problem is that it stings and hurts. nurse suggested lidocaine, which helps for about 3 minutes. pain isn't symptomatic of a problem, so ignore it. and another problem, as long as i'm at this, is my mucus output has more than doubled. previously it was bad, but now i go through 2-3 nursing pads/day. btw, nursing pads are wonderfully absorbent and convenient, albeit a bit bulky. janet [ more ]
skn69 No, not all over again...When (and I am not saying that that is the problem) I had a peristomal hernia, the 1st time, they tried to literally cut from under the stoma via the skin and do an outside fix...it didn't work. Then Dr C went in and had to move to the whole pouch and stoma...that didn't fix it either. Finally, I had my French miracle surgeon come up with something original. Imagine a circle of mesh. He then cut it like a doughnut, a hole in the middle, and a slice taken out of one... [ more ]
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J-Pouch ForumsK-Pouch Korner
Trouble Putting/Keeping Weight On
K kcmintz
MJ0917 Casey I bottomed out to 118lbs after this recent surgery and I was at 145ish only 2 months ago. As somebody mentioned, Ensure shakes is a good supplement for weight gain and I also recommend Lenny & Larry Complete Cookie, you can get the bundle at Vitamin Shoppe. This is basically my meal on the run when I get stuck doing 16hr shifts sometimes. Dietitians recommend lots of carbs for weight gain, but it gives me the "eyetis" and makes me feel sluggish wanting to just clock out and lay in... [ more ]
skn69 Hi Casey I am tempted to say, 'don't worry so much about it...The weight will come back on soon enough' but that would feel like I am belittling your concerns...and I am not. I was chronically underweight at the time of my k pouch creation (38yrs ago) and wore a size somewhere around 0...now I am a 12 and trying hard to whittle myself down to my comfortable 8...nearly impossible lately. I am a true believer in listening to your body and its needs, not the dictates of fashion. Are you feeling... [ more ]
JLH hi--so great to hear the K has been successful and you have adjusted!! very impressive. sorry not to get back to you sooner. as for the weight issue, how about nuts or nut butters? i find that i can pulverize almonds (180 cal/1/4 cup) and macadamian (220 c/1/4 c), but not peanuts and walnuts for some reason. you might be different re types of nuts. I eat a tremendous amount of nuts--say 1/2 c daily--and also am addicted to dark choc, which has little sugar. if you tolerate diary then cream... [ more ]
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J-Pouch ForumsK-Pouch Korner
k pouch volumes
A angilanr
MJ0917 How do you guys manage to go for long periods without intubating? Me, I need to intubate first thing in the morning, after breakfast, and again just before leaving for work before I feel completely empty. Then I intubate at least 1-2 at work, again when I get home, and before bed. I've tried experimenting around with Milk Mag because mornings are just brutal and time consuming for me but didn't notice any difference except the output consistency. I was diagnosed with colonic inertia through... [ more ]
angilanr I will go 2 or 3 days with little to no output and very thick then it is like a faucet pouring water. Sometimes I have symptoms and sometimes it is outta the blue. Thanks for your reply. Looking to convert my k pouch to a BCIR very soon due to valve issues. Ang [ more ]
BillV I have a BCIR, but have never actually measured my output. My guess is that my pouch is quite large, perhaps similar to yours, and I have gone up to 12 hours between emptying it. The range of 500-900cc is normal for a k pouch. If the “pain” occurs only when you pouch is reaching its capacity, this is normal and provides a signal that it is time to empty. If it occurs at other times, it may not be pouch-related and could require medical attention. [ more ]
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J-Pouch ForumsK-Pouch Korner
upcoming hernia surgery on k pouch valve
J JLH
skn69 Just be a good and have a safe return home...don't forget to have a very merry . Keep us posted. Sharon [ more ]
JLH sharon thanks for your good wishes and seasoned advice. not sure how i'd stay inactive for a year!! will ask the doc to contact my physical therapist to review what i can and can't do. have been obsessed and nervous about this surgery. have had too many medical errors--and thus way too many extra surgeries --so have reason for concern. looking forward to it being over and arriving back home! great time of the year to stay extra hours in bed and catch up on reading. will report back on... [ more ]
skn69 First off, Good LUCK Janet, Keeping my fingers crossed for an easy surgery, a quick recovery and a successful outcome. Next, yup, had a peristomal hernia...3 to be exact. The valve kept exvaginating...popping out at the time and leaking like a hose. They tried to fix it from the outside using sutures, using open surgery and suturing it and finally with a mesh fix that was pure genius...he cut the mesh like a doughnut, slit one side and placed it around the stoma/valve and stapled...it has... [ more ]
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J-Pouch ForumsK-Pouch Korner
Weight Gain...
MJ0917MJ0917
MJ0917 Just an update, I had surgery a month ago to fix this issue. It was a very difficult diagnosis where not a single diagnostic test could detect what the problem was. I had CT Enterography, Pouchscopy, Pouchscopy with Retroflexion, Pouchagram (aka Fistulagram) with contrast fluid all tests coming back negative. My lone but highly distressing symptom was malodor incontinence. I had no frank leakage, no problems with intubations, I emptied/irrigated frequently, all to no to avail. My surgeon Dr. [ more ]
MJ0917 Sorry to hear that surgery is your only option Janet. Yup before surgery I asked my doctor if lifting weights was ok once my pouch had fully matured. I was told it was fine as long as I avoid any abdominal-related exercise as it could cause the valve to slip or result in a hernia. [ more ]
JLH Another thought I had was about exercise in general. I had been doing a considerable amount of Pilates and core exercises Lo and behold I also developed of hernia next to my valve. This is been confirmed with a scope and the solution is surgical. Until the surgery the doctor told me to cut back on the Pilates and exercising. Apparently whatever you're doing is not damaging the valve, which is great. Who knows how my hernia developed – – I'm not so certain it was because of exercising, but... [ more ]
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J-Pouch ForumsK-Pouch Korner
Can't get my catheter through the valve...
J Jasmine 2
JLH have you checked in with the stoma nurses? re pain and intubating techniques? some suggestions: use lots of lub. pee so that bladder is empty and it also relaxes you more. put catheter in freezer for 20 min. stand up--w cath kinked over or clamped off--and lean forward a bit, or kneel in front of toilet. most of all relax, relax, relax. if you can't get cath in then stop for awhile and don't tense up. it takes practice!! [ more ]
skn69 Shavon, There is pain and then there is Pain. For now, you are post-op, things are not even close to being healed, things are finding their place in your body, settling in and learning their new functions...there will be pain, discomfort, and fear. Lots of fear, panic, and confusion...this is all so new to you, so different. So give it time. Relax (I know that that is the hardest thing to do) and do not expect too much too soon. It takes time. There is no rushing this stuff and it is going... [ more ]
Shavon I was just saying that to my mother as we were struggling to flush. We tried something crazy and it worked and she told me to be patient as we sometimes figure out strange solutions- like I did with my ileostomy. I told her that the difference is that figuring out solutions with my ostomy bag wasn’t painful like this. I can’t be patient with trial and error when I’m in so much pain. I’m really wondering if I made the right decision choosing to come to Cleveland for a Kpouch versus staying... [ more ]
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J-Pouch ForumsK-Pouch Korner
Packing for K-Pouch Surgery
S Shavon
skn69 Shavon, I know that it can be scary and overwhelming but take it 1 hour at a time...there will be great ones and terrifying ones...but as time goes by the days will slip past and you will see patterns developing...foods that your pouch likes and others that you need to put on the shelf for a few months and then try again. Since it is winter I would suggest eating lots of soups, the advantage is that you eat and hydrate at the same time and they are usually pouch-friendly. Avoid fibers,... [ more ]
Winterberry Long sleeved undershirt to wear under your hospital gown because it can get cold at night and hospital blankets are flimsy and lightweight. Socks to wear in bed. Washable slippers for walking around the room and hallways, and put into the laundry when you get home. Leakproof water bottle to keep hydrated. [ more ]
Shavon Thanks for the suggestions. I had surgery a couple weeks ago. It has been really tough as everyone said it would be. I stayed in the hospital 2 weeks - sometimes regretting my decision to have this surgery. I was discharged last night and I’m staying at an Air BnB for a week until my follow-up appointment. I’m still having moments of regret because I’m home sick and I’m overwhelmed by all this new stuff I need to do on my own now. I’m not sure if I’ll ever be able to drink enough liquids to... [ more ]
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J-Pouch ForumsK-Pouch Korner
Pouchitis & imodium
D Dyna
bowelsofhell Imodium isn't anywhere near powerful enough to do that. All it can potentially do is slow you down (and it probably won't be of any help with that in the face of virulent pouchitis, anyway). When pouchitis is really bad your symptoms can be wide-ranging and disabling. Diarrhea's just one component of it. Even if there was a drug strong enough to mask its symptoms (as opposed to actually treating it), the inflammation would show up in your scopes. [ more ]
Dyna The reason I asked the question is if Imodium can mask pouchitis systems can pouchitis untreated cause the pouch to deteriorate and fail? [ more ]
Shavon I use Lomitil which is is stronger than Imodium. It gives me some relief - especially at night. [ more ]
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J-Pouch ForumsK-Pouch Korner
Traveling for surgery?
S Shavon
Shavon Thanks for all of the feedback. I traveled to Cleveland last week to meet with Dr Dietz at UH Cleveland. The flight wasn't bad at all - only an hour. I used Air BnB for the first time to help lower the cost of the trip. The nurses helped me feel much better about having surgery away from home. Apparently most of his patients are from out of town so they are good at making accommodations. I'm having surgery next month after this Stelara gets out of my system a bit. I'm in the process of... [ more ]
JLH shavon i'm not clear about a couple concerns. Has A G.I. doctor said you are a good candidate for a k pouch? if so, is your concern about traveling relative to having the surgery away from your home town or traveling in general after the surgery? I live in Boston, where one would might assume such surgery would be available, however I needed to go to Cleveland clinic. this was in 2015 and Dr. Dietz did the surgery. As you're aware he has since transferred over to University Hospital. I would... [ more ]
skn69 I seem to be an old hack at this... I lived in Toronto and traveled to N.C Duke U to have Gracillis muscle flap surgery twice (they used both legs)...the first was sort of terrifying (and painful as heck) but the second was horrific...both ended up failures. My Canadian health insurance covered both trips, family to accompany me and my whole hospital and post-op stay (6 weeks each time). Once I moved to Paris I found myself hanging out on a limb...no one knew what a kpouch was and no one... [ more ]
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J-Pouch ForumsK-Pouch Korner
How Many Times Can a Pouch be Redone?
C Creampuff
Myriam Thanks. My intestine is olaced right above the stoma so the bump is because of this...not sure if real word is hernia...but now the hole being too large the valve moved up by 1 inxh..they brought it back down and stitched the skin aroung because was leaking... Hope it was hekp..they hope the skin could rebuilt and close the entrance more but but many questiobs will i still be continent... If need to refix or stitch the valve under can they do it without majot abdomen openings... i want to... [ more ]
JLH myriam by prolapse do you mean that the valve is outside of the stoma? Or is it that the stoma sticks out, but your valve remains continent? The reason why ask is I have the latter condition – – a bulge sticking out from my tummy – – and the problem is a hernia right next to the valve. I'm scheduled for surgery, which will reinforce where the hernia is, in December. I am wondering if you have a hernia or if this is how your prolapse started. Sorry about your condition and I hope your doc is... [ more ]
skn69 I PMed you Myriam... Talk to you tonight. Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
Marlen catheters in Uk
M maisy1
Wendy Anderson Thanks everyone for all the positive feedback. I really hope this is successful, I can't afford to cause any damage to my valve as it is just hanging in. The Medina catheters are just too stiff. Will keep you all posted. �� [ more ]
Adroen After checking old e-mails it was indeed Stomabags.com that I had ordered through! Good luck Wendy. [ more ]
Adroen Haha! I started that last post before Mary(thanks Mary) had posted, but that was the place I was thinking I'd got the stuff through. I will have to check old e-mails to find out for sure though. [ more ]
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J-Pouch ForumsK-Pouch Korner
K pouch vs. BCIR
GW Guy with j pouch
Dave Wallace Thank you Bill. Yes, it is Dr. Schiller, and I tried to hook up with him a few years ago. He was very willing to work with me, but at the time my mother got very sick, requiring 24 hour care, which I provided, despite my pain. Unfortunately, or perhaps mercifully, she died late last year. I will begin my insurance search, but like I said, come September, my company, by far the biggest one in California, is leaving the market, and I don't know if Aetna will work, but I'll try. But my first... [ more ]
BillV Dave, the BCIR is definitely worth fighting for, provided you are qualified medically for it. You should have sufficient small intestine to make the pouch. I am assuming from your location that the doctor you referred to in your post is Dr. Don Schiller at Olympia Medical Center. He has been doing BCIR’s for many years and has an excellent reputation. I suggest that you first contact his office to see if you qualify medically for the procedure. If so, you can then discuss your insurance... [ more ]
Dave Wallace I have a long history with illeostomy, then a K pouch, then the illeostomy again. I hated the illeostomy for obvious reasons, and for a while, the K pouch, done by Dr. Launer was fine. Then I started getting pouchitis, again, and again, worse each time. I had to have it taken down to an Illeostomy again. I've now spent over a decade with that, and I'm at the end of my rope. I'd rather well, I won't finish that sentence, but I desperately want the BCIR, and have a local doctor and hospital... [ more ]
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J-Pouch ForumsK-Pouch Korner
Flagyl for SiBO?
B Bodoni
Bodoni Food with Flagyl may help. I still get a belly ache. It's a nasty drug. [ more ]
JLH have you considered the lowFODMAP diet? i've posted info on this forum. it changed my life. difficult diet at first, but also consider it is only for 6-8 weeks, after which time you start re-introducing foods. if it works you will know within the first week. janet [ more ]
bcirray Should always take antibiotics (flagyl) with food. Ray [ more ]
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J-Pouch ForumsK-Pouch Korner
Lack of sleep
Patricia WalkerPatricia Walker
marz I have a Barnett pouch and recently have been waking up at night with pain (which does not feel like gas pains). I've had the pouch for 15 years, but 3 years ago I had a 1.5 inch "stone" in the pouch and even though it was removed, the pouch has never been the same. I go to Dr. Shen at Cleveland Clinic and a few years ago he prescribed opium tincture (formerly called paregoric) for pain. It's liquid and about the worst tasting stuff in the world--but it does work for pain the in the middle... [ more ]
Patricia Walker Thank you for replies. My problem is the K pouch that wakes me with pain, but it always has. [ more ]
JLH Also factor in situations that can dehydrate you, in particular airplanes. I've ended up in the ER, in places such as Qatar – – no rhyme intended– – Because of dehydration. Last summer for dehydration got so bad I was in hospital because of kidney failure. Be careful [ more ]
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J-Pouch ForumsK-Pouch Korner
ICU
skn69skn69
skn69 Exactly Patricia, I have been home for nearly 2 weeks and I am still mind boggled at the fact that no one even knew that k pouches exist! The number of medical staff who told me that this is a wonderful idea...When was it invented? When I told them that mine was 38yrs old they gasped! Why wasn't it being offered in France? Why weren't people talking about the 'other options' to outside bags...I had nurses sniffing me to see if I had a smell! (yup, apparently here, most people with end ileos... [ more ]
Patricia Walker Hello Oh! I so understand how difficult it is explaining K pouch once admitted to hospital. This is just what happened to me a year ago when my valve jammed. In the end I ask for a pen and paper. In shocking pain I tried to draw and explain everything. I finally politely said "look it up on line". 40 years of K pouch and still feel I face a brick wall. Once nurses understood they were interested and very kind. Best wishes [ more ]
skn69 Thanks Bill...I have been 'stepped down' to a normal nuro room ...having a cardiac CT scan with contrast and an arteriogram....crap...these guys so not fool around! Starting to feel rather furry and guineepigish... Not sure if they bill by the test or the minute but I am thrilled to have 3 insurances. Years ago at Mt Sinai, I was to be discharged day 7 post op pouch repair...on the night I started kicking up a fever, by morning nausea and chills...my head pounding...the orderly showed up at... [ more ]
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J-Pouch ForumsK-Pouch Korner
Anyone use this catheter?
vanessavyvanessavy
LuckyLady Try www.Torbot.com A great customer oriented company that often provides free samples. Also got curved ones (there is a list of international distributors on this site) from: http://www.wellspect.com/Produ.../Ileostomy-catheters Pamela [ more ]
michael s I use the weber and Judd catheter I think it is the best on the market. But it is expensive. It will last a long time [ more ]
Adroen Thanks Sharon, Have ordered some from Stomabags.com. Never ordered through them before, so crossing my fingers it works out. They carried both the Medena and the Marlen lines. Got some of the Marlen curved 30Fr, as they look like the best bet for me, but I wanted to try some of the others too for when the time comes to use them. I browsed a lot of places before that, but only a few ship outside the USA. The Weber-and-Judd for example was only available through merchants that shipped within... [ more ]
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J-Pouch ForumsK-Pouch Korner
Pouchitis in K pouch--any experience?
J JLH
Patricia Walker Yes Sharon I agree. I have had bleeding simply from the catheter. Seems not to happen now but I am having less problems these days with the valve catching. One thing that has improved. [ more ]
skn69 Just a side note...There is bleeding and bleeding...3 or 4 kinds to note. 1. Outside or bright red bleeding comes from the stoma or the 1st centimeter or 2 of stoma...it is bring red, usually only on the sides of the tube or the paper and is caused by granulation (those white bumps that grow on the outside and edges of the stoma) or some irritation around there or in the valve itself. 2. When the blood sort of gets into the tube, coats it from the inside and outside or is very slightly mixed... [ more ]
Patricia Walker Just another thought regarding bleeding. No nothing to worry you. Now they are removing sugar from drinks the horrible substitutes for sugar, I have found can cause bleeding. As I usually know to avoid these drinks it is unusual for me to drink them. But I found this only happened following these drinks. No more problems so far, as I stick to mineral water. [ more ]
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J-Pouch ForumsK-Pouch Korner
lubricants
hollyfaith76hollyfaith76
lesrich1 At home, I use coconut oil. I keep it in a smaller container in the bathroom. It will solidify. I have traveled with it. I put the container in a ziploc (which was a good thing). It became liquid and leaked a little. But, definitely at home, coconut oil. [ more ]
LuckyLady I use KY gel, available through Amazon, or your local sex shop ) [ more ]
Bodoni I use the store brand at Wall-Mart. Cheapest around. Lube is Lube. Well, unless you take your auto to Jiffy-Lube. That's another story. PS: I do sometimes buy the little packets of Surgilube to keep in the car or in my pocket in case I have to intubate away from home. [ more ]
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J-Pouch ForumsK-Pouch Korner
J-pouch to kock-pouch in Germany
M mamabär
LuckyLady Interested in learning how this was resolved, Mamabär! I live in Germany and just saw Prof. Dr. Kroessen at the Krankenhsus Porz am Rhein, Köln. Because of intubation problems. He does Koch pouches & is very knowledgeable [ more ]
skn69 Mamabar, You may have a pouch torsion (twisted pouch that has it twisted on its side or even upside down into a hernia or it may have fallen off of the wall (slipped down)) which means that as long as it is not full up it doesn't leak but once it starts to fill and gets heavy, it pulls on the valve and pops it open and so it leaks...you need them to do an exam under x-ray so that they can get a definitive answer as to what is wrong with it...if it has fallen, twisted or herniated around it... [ more ]
mamabär Hello, I'm completely leak .... I hope. Otherwise I would have been a big problem. My Kock, deflates 3 ​​to 4 times a day by itself. In between, nothing comes out. What should be the precipitation on the day (ml)? I'm very insecure. When a valve is leaking ... why it does not run over the whole day? Can it happen again because that the valve completely closes or bends so that nothing comes out? Who had yet to do so and can tell me? greetings, Mamabär [ more ]
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J-Pouch ForumsK-Pouch Korner
34 1/2 years with my Kock Pouch....
J Jasmine 2
LuckyLady I'm posting all over the place today! Thanks to this site, SKN69 & Creampuff, I found a German surgeon who does K-pouches. I met him on Tuesday and was favourably impressed. I was quite desperate at the time. My recent crisis is over, but it was such a relief to have happened on this site while in hospital and discover other older K- pouchers have had the same issue. Now I also have knowledgeable help at hand if the problem returns. [ more ]
Arlene B66 Thank you so much Vanessa & Jasmine you don't know how wonderful it is to connect to someone in the same boat as you! Happy New Year! [ more ]
vanessavy I stand up and bend over too with the cath pointing in the toilet. Everything comes flying out that way. If I sit on the toilet I am there too long. I want in and out in 2 minutes. [ more ]
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J-Pouch ForumsK-Pouch Korner
BCIR Help in Europe?
C Creampuff
LuckyLady I saw Prof.Dr. Kroesen yesterday. It looks as if the valve is no longer inflamed and he inserted a catheter with no problem so I am hoping that things will return to normal for a while. I really liked this surgeon - personable, helpful, knowledgeable. He has had several patients with 'older' pouches who have had similar intubation issues - it is apparently not uncommon (and when you think of it - 30+ years of wear and tear)! Two of his recent patients had their pouches created by Dr. Koch... [ more ]
LuckyLady My Gastroenterologist met Dr. Kroesen at a conference in Berlin last week and spoke to him about my problems. He can, apparently, replace the valve if necessary and has also had good results wth 'stretching' the narrow spots. Can't wait to meet him next month! [ more ]
Creampuff Hi Pam, I'm so glad for you. Peace of mind is priceless. I have read a good amount on him and will be making an appointment with him and Dr. Ecker myself. I know I'll eventually need a surgery and I want to meet them both to see who I feel most comfortable with. keep us posted! [ more ]
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J-Pouch ForumsK-Pouch Korner
Surgeon names for K-pouch in Canada
RM Rich M
LuckyLady Having similar problems - Was your issue solved? [ more ]
Dave1962 Hi Sharon yes he is still practicing at his Toronto clinic. Personally I havent seen him in about 10 yrs, he has 3 other clinics that have 8-10 surgeons in each. Not sure if they still perform K pouches. I am sure it is a nipple slip or twist as I am having trouble but would rather get it checked sooner than later. I also occasionally get a small amount of gas escaping when very full and I move the wrong way. It used to take me less than a minute to empty, now it takes me about 10 mins just... [ more ]
skn69 Hi Dave, Did Dr Rudd do your k pouch in the early 70's? I had heard about him and his clinic way back then but had never met him...does he still practice? Do they still do the k pouch in his clinics? Generally when the vavle starts to become inaccessible it can be: 1 A valve twist or slippage. Is it 'sticking its tounge out at you? Does it look like something has changed? 2 The pouch has slipped off of the wall. Rare in later years but it can happen. It can be put back up using laporoscopic... [ more ]
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J-Pouch ForumsK-Pouch Korner
Thinking about k-pouch, need some help!!
MG Mikayla Greenway
skn69 Hi Mikayla, Well, lots of questions...here goes for the answers... 1. How big is the surgery? Recovery time in hospital? The surgery lasts between 6-8hrs depending on the surgeon. The prep is 24-48hrs pre-op...They empty out your intestinal tract, put you on a short term run of antibiotics and once you are as clean as a whistle they open you up with a mainline incision. Usually, it is a one-shot surgery. They remove the colon, close the bottom and create the pouch. You have an abdominal... [ more ]
BillV Hi Mikayla, I have a BCIR, which is constructed a bit differently than the K pouch but essentially functions the same. The K pouch valve is constructed with a short segment of your small intestine and holds the pouch contents (stool and gas) inside with no leaking. Once the pouch reaches its full size, approximately 600 to 800 cc, it requires emptying between 3-5 times a day. You normally do not have to disrupt your sleep to empty during the night. The pouch is emptied painlessly and at your... [ more ]
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J-Pouch ForumsK-Pouch Korner
BCIR one year annivesary- still battling pouchitis and severe iron def. anemia
PO Pressing On
Patricia Walker So interesting the above posts. It has taken me years to learn about my diet with K Pouch. I cannot tolerate fats in my diet. This did create the mucus problem mentioned above. This does not happen at all now. For years (after advice from alternative practitioners here I avoided any form of additives in food) I avoid dairy etc. My pain is so much reduced. I believe I had pouchitis for many many years and just suffered as 40 years ago there was no information. In recent years I tried... [ more ]
Bodoni Regarding the BCIR - would you do it again? How long have you had it? Any problems getting the tube in? Any leaks? I have been lucky with pouchitis. Only couple of cases in 15 years. 21 days of Flagyl works for me. My K-pouch leaks a small amount if I eat a big meal and wait too long between intubations. I am considering the BCIR or going back to Dr. Bauer in NYC who did my first surgery in 1976. He says it is about 80% success rate on revision surgery. ( He says valve surgery works best on... [ more ]
skn69 If you are afraid of using tap water (although I have been using it for 35+yrs and have even used lake water (not advisable but I had no choice), ocean water (on purpose) and just about every other type of water) you may wish to invest in a Brita and just filter your water...it removes most of the junk, gunk and chemicals and is so much cheaper than bottled water. I irrigate my pouch daily or whenever needed...They do say that k pouches have fewer incidents of pouchitis than j pouches but I... [ more ]
See all 8 replies...
J-Pouch ForumsK-Pouch Korner
alternative to fruit juice
Rosie128Rosie128
Former Member ❤️
Francesca2020 ❤️
skn69 I don't count the quantity but my morning routine is 1lrg glass of water, 1 of juice and 1 litre of strong coffee (keeps things moving in the morning)...if I am working I drink between 2-6 coffees/day plus at least as many glasses of water...(I grab a glass before the coffee each time)...drink one as soon as I get home and before dinner, lemonade with dinner and at least 2 glasses of fluids after dinner (herb tea or coffee and a glass of water)... That gives me my intake...in the summer I... [ more ]
See all 10 replies...
J-Pouch ForumsK-Pouch Korner
Is K Pouch an option for horrible uncontrolled Proctitis?
C Chute
Adroen Hey Chute, I hope you're doing well. I don't think I've seen an update on here about how you went. Probably resting and healing. Fingers crossed all went well. I sent Mikayla a PM, and was about to send you one too but thought I may as well just post this here, since it's more of a general interest for me in the availability of the K-Pouch. I come from a background of a failed J-Pouch, and currently have a perm ileo, which as I mentioned to Mikayla, isn't so permanent when it comes to the K... [ more ]
Mikayla Greenway Chute, What a small world. He has been my surgeon for 4 years now. He is the most amazing doctor out there. Truly cares for his patient and going out of his way to make patient care his first priory!!! I have had my 3 part J pouch surgery done through him and we talked briefly about k pouch but deiced the J pouch. I have not seen him in 15 month but now having problems again, so am going back to him next week to see him but just wondered if other in brisbane had done the K pouch. I am so... [ more ]
Chute I actually saw a surgeon called Stephen Allison at tthe Greenslopes Hospital. He seemed nice enough but I need to get well so have to have an illeostomy first for at least 6 months. Then I can decide where to next... and also with this option I will be well and truly better for my UK trip! counting down the days (12 of them!) Do you have private healh Mikayla? There are a couple of surgeons also in Melbourne who will do the K pouch.. but nobody else in Aus. if you want to go see dr Allison,... [ more ]
See all 23 replies...
J-Pouch ForumsK-Pouch Korner
J to k conversion
GW Guy with j pouch
JenJen Sharon, I was happy to hear you got your test finally -- and now this. One step forward, but headed up a very steep hill. I hope you are doing better nutritionally as this has got to be taking its toll. What a warrior you are! I also understand and admire your dedication to your son! I've been though my own personal hell with this disease while raising my two sons from 9 & 11 to now 15 & 17. They are so challenging and amazing they defy description -- I don't know what I would have... [ more ]
sharon O. So after 3 weeks of leaving messages, being ignored by secretaries, nurses, staff, and anyone else who answered the phone.....I lost my marbles on the doc's answering machine. The doc himself called me. He did apologize for the delay in anyone calling me with any kind of results. He said the pill camera showed a huge area of ulceration exactly where I complain of the pain and noise in my belly. It's at the same spot again....the take down/stoma/anastomosis spot (which I had resected in... [ more ]
skn69 Congratulations!! Now let's see what is going on in there... [ more ]
See all 50 replies...
J-Pouch ForumsK-Pouch Korner
Stenosis
S Sunshyne89
skn69 Janet, when I had the problem(s) with the hernia(s) the first symptom was incontinence (the peristomal hernia relaxed the muscle that held the valve tights so that nothing was keeping the valve in place) eventually the whole valve popped out in my hands (and hung there looking suspiciously like a part of the male anatomy sticking out of my abdomen)...It was a fire hose...I sprayed my girlfriend's brand new bathroom...To her credit she didn't bat an eye but grabbed the camera to send a... [ more ]
JLH sharon--so interesting that you write this as i am currently trying to figure out what my problem is. might be the hernia increased, as the stoma is 99% of the time puffed out, even after extensive irrigation. and/or the valve has slipped as the insertion can be difficult. need to super lube up the catheter and then wiggle it in, make a slight turn where i think there is a crook in the passage. this crook isn't always in the same place. now this discussion raises stenosis--oh good, another... [ more ]
skn69 Where do you live? Why do you have to go all the way to Palms to have a scope? Unless you live in Fla why not have a scope done where you are and send the results to Palms to interpret it? That is what I did from here in Paris...I couldn't fly out every time so I 'taught' my radiologist what I needed according to Dr C's instructions and we sort of got creative...in the end, we dripped the Opac into the stoma a few drops at a time to visualize the stoma and valve (I have an elbow... [ more ]
See all 7 replies...
J-Pouch ForumsK-Pouch Korner
Another valve slippage
Kara FredKara Fred
skn69 Hi Kara, I am so sorry...I know how hard this is...you sound so calm and level over this...I admire you...it is never easy to have to make a choice and I am sure, no matter what, that you will choose what is right for you. Good luck tomorrow and I pray that things work out for the best. Sharon [ more ]
JLH Kara Just a quick note – –tough decisions ahead of you and you know your body better than any doctor ever will. Will be thinking of you tomorrow and sending healing WhiteLight. Yes! Third time will be the charm. Janet [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
Alcohol
amosamos
skn69 Red wine should work the same way that grape juice does...liquifies things...Ditto for white but less so...As for beer and other alcohols, they tend to dehydrate you more so be aware of the signs and compensate with extra hydration (or drink rum and coconut milk!) sharon [ more ]
amos Not sure ipas? Lite beer low carb? [ more ]
J moons Yes. IPAs especially. I've found red wine and domestic light beers are easiest. [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
GI bug in Bangkok, ER in Qatar--serious dehydration
J JLH
skn69 Oh goodness, Janet, I am so sorry. What a horrid way to end a lovely holiday. You should head out to see your GP now that you are home and get a full panel of tests done before you consider going back to work. Make sure that whatever was eating you is all gone... No, as k pouchers (or j pouchers although they tend not to irrigate their pouches like we do) we are not like other people, we are more prone to attacks from insidious bugs, nasty germs and contaminated foods...Although I am far... [ more ]
See 1 reply...
J-Pouch ForumsK-Pouch Korner
Has anyone ever listed the possible k pouch complications?
skn69skn69
JLH hi all--thought this would be a good forum to ask if others have experienced a puffed out stoma area, say about 2-3" in diameter. if so does it means a hernia or slipped valve or what? it happens even after a full evacuation with lots of irrigation. i have no leakage. my stoma used to lie flat on my belly--am thin and have very strong core muscles thanks to daily pilates and yoga, so the protrusion is very obvious. i have been having difficulties intubating--the valve is no longer a straight... [ more ]
skn69 It is not embarassing (at least after a couple of dozen of them) and I no longer notice because I am so busy watching the screen to see what is going on in there! I wear very low undddies that he sort of covers with an absorbable cloth (you need to tuck it under too) as well as a T shirt that I pull up to show my abs and stoma. (no more exposed than if I had worn a bikini. You need to guide the radiologist. You need to tell him where you feel it was and is now and the direction that the... [ more ]
KrayH Thanks for your reply Sharon......we've all here had procedures that stripped our...well... dignity. R u saying the surgeon actually needs to empty the pouch in the office? I'm cringing at that thought. We all must do what we need to do.... I might need some general anesthesia ������❗️ [ more ]
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J-Pouch ForumsK-Pouch Korner
Revision to valve or create a Koch pouch
B Bodoni
JLH In NYC I go to dr. Kiran at Columbia-Presbyterian for my k pouch maintenance. So far I've only had a check up with him and no surgery, but I may be needing a little tuck and nip as a hernia has gotten larger. At least I think it's a hernia. He had been at the Cleveland clinic for training. So far I'm very impressed with him and his staff. Who did your original surgery? What's the problem with the valve? Janet [ more ]
See 1 reply...
J-Pouch ForumsK-Pouch Korner
Is this normal?
PO Pressing On
JLH Happens to me often. Chew! [ more ]
skn69 Pressing on, Like Bodoni says, things can get dragged out or trapped in the valve during intubation and migrate their way out on their own, it happens to me often. I have a crook in my valve (like an elbow) and things just get stuck in their...About 1/2 later they pop right out (sometimes it is a tsp of gunk that slides out)...no biggie. On the other hand, things can also get stuck further down the canal and partially block the tube open and then allow air or 'stuff' to come out... [ more ]
Bodoni I have a K-pouch. Once in a while, when I am pulling the tube out....it may leave a piece of food in the valve tract. Then, some time later, that piece of food will come out on its own. This is normal. My pouch at times will release some gas/air. In theory - it should not leak air or gas. But my valve is a bit slipped - so you can't go by me. If it only leaked a bit of gas once, it's probably nothing. Now, if it leaks air a lot - then I would call Sue Kay and let her know. Keep us posted. [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Constricted Stoma
B Bodoni
JLH Bodoni what are your symptoms? If you were looking for a second opinion Dr Kiran is also in NYC. [ more ]
skn69 Yes and yes. I had a valve that sunk post op into the canal...leaving the hole in my skin without any reason to stay open. They tried to fold the skin over onto itself to open up the hole, to inject it with cortisone and a few other tricks (z plasty)...none worked in my case, I needed to have the valve pulled up and out the skin to block it open. The 3xs that they tried to fix it I had to keep the tube in for a minimum of a week...to avoid having the sutures rip out or irritate the zone. If... [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
Valve Self-repair
C Creampuff
skn69 Creampuff, Those are 2 different problems...A slipped valve and a crooked valve. A slipped valve has usually something to do with some sutures inside the valve letting go or ripping or the staples popping out and the valve no longer being continent. A crooked or angled or twisted valve are totally different. Sometimes the valve can heal too quickly on one side more than the other or your stoma can 'sink and cause the valve to twist (like a corkscrew) as it sinks into the valve (think socks... [ more ]
See 1 reply...
J-Pouch ForumsK-Pouch Korner
PU solutions
J JLH
Former Member ❤️
JLH yes, love knowing the exact definition of a commonly used word. indeed some people think certain potpourris do stink. jen--will be curious to know whether your home brew works as good as the commercial. mine only works if i also put in 10 +/- drops of essential oil. the poo- pourri site offers a free--pay for s&h-- 2 oz spray. will do a test once it arrives, but would like to hear your results. thanks, janet [ more ]
JenJen Thanks for the recipe Janet! I will refill the bottle I'm about to finish with my favorite essential oils, glycerin and water and see if I can make a better substitute. Thanks for your etymology lesson, Sharon! Your post made me google "potpourri" and now I know it was just a pot of rotten flowers -- So funny the way some words get appropriated :-) [ more ]
See all 9 replies...
J-Pouch ForumsK-Pouch Korner
Mango, yoga & pilates...how not to start a new year.
skn69skn69
skn69 Thanks Janet, I tend to like my bread burnt, not my veggies...also love my meat burnt to a crisp...so I respect your right to burn your veggies! It was my dreaded 'blockage site' that felt like it twisted a bit and all of the mango fibers just caused a traffic jam just up-ahead of it and nothing was moving....for about 10 hrs...sort of scared me because the last place that you want to be on New Year's eve is ER with all of the idiot drunk drivers & the idiots who blew their fingers off... [ more ]
Winterberry Sharon, if you visit Canada again, you will find excellent creamy almond butter at Costco! It is their house brand, Kirkland. It contains only roasted almonds. I eat this on sourdough bread and it's delicious. [ more ]
JLH sharon--great description of veggie prep. thanks! i microwave them and then sauté with sesame seeds and oil--usually burning the veggies, which adds a distinct flavor not unlike a forest fire. like it that way. and of course soups are the best. i do find that i like thick soups and that clogs up the catheter. when you say blockage do you mean your intestine was blocked or the pouch got a blockage? sure hope it wasn't yoga or pilates. best, janet [ more ]
See all 5 replies...
J-Pouch ForumsK-Pouch Korner
shrinking stoma/skin bumps growing
Rosie128Rosie128
Bodoni I have a tiny, strictured stoma. Is there a simple surgical procedure to enlarge the opening a bit? john@winedesign.com [ more ]
BillV Janet, the binkie was devised and is available from Wayne Jacks who can be contacted at mwjacks@aol.com . He makes them himself and they come in two sizes. They are not available commercially. Hope you have a great and uneventful trip to China. Bill [ more ]
Rosie128 Thanks Janet! I will keep you posted. Safe travels to China & enjoy the trip! [ more ]
See all 8 replies...
J-Pouch ForumsK-Pouch Korner
New pouch - difficulty intubating + gas & leakage
DL de lune
skn69 Not sure if I have heard of NuVal but there is a company called Ostomycure that has a really cool implant that is a continent valve...they use it for normal ostomies and for people about to have them done but they can/could be adapted to us as well if I am not mistaken. http://ostomycure.com/ You might want to check it out. Sharon [ more ]
Bodoni Has anyone heard of the NuVal...a device to use in place and may help control leakage? Someone from cir.com mentioned it....but I can't seem to find any info. [ more ]
JLH Sounds absolutely Frighteninng. So sorry for what you are going through. I agree that a 30 Fr is much better. For me, even the 28 didn't have enough structure to insert properly. It would flop over. And the holes are too small. Just a thought but might you consider getting a second opinion from a different hospital system? Where are you going now? Keep us posted. Janet [ more ]
See all 6 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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