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J-Pouch ForumsK-Pouch Korner
Arthritis?
B Bodoni
Jasmine 2 I didn't take predisone, and I still have UC arthritis. [ more ]
Bodoni I too have lots of joint pain. My doc thinks it's due to all the pred I took years ago. [ more ]
jeane Yes...I have severe osteoarthritis for years of taking pred at high doses for long periods of time. I am 49 and ache all the time. It is very frustrating. [ more ]
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J-Pouch ForumsK-Pouch Korner
Continent Ileo Tips
vanessavyvanessavy
skn69 Definely the right side for me...not even for a minute on the left, my pouch 'flops' over and it is hard to "unflop". As for tubes/cahteters etc, depending on you and your experience you can cut extra holes in certain catheters (parctice on old ones) by pinching the spot flat where you want the extra hole, take a sharp knife (ooops...be very careful to do this slowly, over a counter top and do not cut yourself!)...you just cut up a semi-circle through the pinched area and you have an extra... [ more ]
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J-Pouch ForumsK-Pouch Korner
Who has had a valve revision?
vanessavyvanessavy
vanessavy Everyone guesses it is scar tissue. I have a "speed bump" I call it at the entrance of my stoma so I think that is scar tissue for sure. It also feels like my stoma is a suction cup around my catheter at times, like it shrunk, no idea what to do for that, stretching it or leaving a stent in doesn't work anymore, i just had my 2nd pouch scope yesterday in 3 months and the valve is good just on an angle. I guess for now since I just had surgery this local Kpouch surgeon is going to try to do... [ more ]
Tokyoexpat I had my K pouch done in 1980 and have had revisions in 1998 and 2006. Both times problems began when I had trouble inserting my catheter. [ more ]
AFmom I have had my BCIR since May 2007, after about three years developed some scar tissue around stoma opening, doctor tried to repair without cutting me open, just didn't take, had stoma revision this past Feb, he had to cut me open again thru the old scar, but was able to convience him to get rid of those extra two lumps on either side of the scar, so everything works great and I have a flatter tummy, shorter hospital stay than original, no regrets even with new scar. [ more ]
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J-Pouch ForumsK-Pouch Korner
smell proof containers for tubes
D dpol
Tokyoexpat I have found tobacco pouches to be the best. [ more ]
grandma64 Whenever I shower, I intubate first thing, then I rinse out the tube, throw in on the floor of the shower while I wash! That way it's getting a cleaning at the same time as me! My tubes stay pretty clean and I haven't ever noticed a smell. [ more ]
JaniceM Yep, my cath gets a bit funky after a while....you can soak in the sink with bleach not too strong to be sure it doesn't eat up the cath holes. I just keep in zip lock bag. I like Jasmines idea of pencil case! what about a peice of cotton with a big tea tree oil as that is a natural antiseptic and shouldn't hurt stoma. Try not to worry about it. [ more ]
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J-Pouch ForumsK-Pouch Korner
Food Questions?
grandma64grandma64
TrinaS I second Sharon's diet -- perfect for me. I need to avoid melons and celery (not for gas for obstruction) [ more ]
vanessavy I had a lot of those issues now I don't get gas but I am on Omnicef, an antibiotic. Probiotics made my issues worse and there isn't enough science that shows they work without a colon present. For my bacteria overgrowth I am on small dose of antibiotics. Minute I go off them it is a world of hell. Maybe you have some overgrowth or pouchitis? I can tell when mine is bad off of antibiotics. The smell alone is my indication. [ more ]
skn69 I use the GNC kind or something from Walmart and don't bother with fancy, expensive stuff. It works well for me but sometimes I need to crush them a bit or they don't digest before going through. Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
questions about procedure
N NJK
vanessavy It should be removed especially since rectal cancer can still hit there. [ more ]
Former Member I still have a rectal stump left. I originally thought that I was going to have a "barbie butt", but when I came out of surgery, my doctor informed me that he did not remove the stump. He said in his opinion it would have done more harm than good to me (I had surgeries on that area when I was a baby and have scar tissue). I trusted his judgement and have had no issues with it being left intact. However, I believe most of the time it is removed, I am just an exception. Always have been! [ more ]
skn69 Barbie Butt for sure...they do not leave anything in because this is a 'no return' sort of surgery...but quite honestly I was thrilled to be rid of the source of all of my pain and anguish. Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
Had a CT Scan
vanessavyvanessavy
vanessavy I can only go 2 times a day to 3. Depending. Just how my pouch works right now. it's a pain in the butt [ more ]
skn69 Vanessa, With a kinked valve you should not be emptying only twice a day but relieving the pressure more often because it puts 'inside to outside' pressure on the valve and can cause a real problem getting the tube in. Next, you are absolutely right, the more you lift the worse it is going to get because it may be the muscles around your stoma that are aggravating your kink or worse a small, undetectable hernia that is worsening due to the weights so you should really lay off for a while or... [ more ]
vanessavy Yea I am over doctors lately, Nobody wants to claim the fluid as of now. Colorectal guy locally said it is GYN related, my GYN said with that much fluid and perfect ovaries it is not GYN related. I mean CC has done articles on this that people with UC and FAP build up fluid, thy have no explanation for it but they drain it. Either way I am not getting help locally so I will just wait and see what these people say at CC. I don't get damn doctors sometimes. Otherwise I am doing really good... [ more ]
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J-Pouch ForumsK-Pouch Korner
I did it!!!
EricEric
Adroen Congratz! Ad [ more ]
Rosie128 Congrats Eric! Glad to hear that you are out there enjoying your life! Isn't it great? I wish you continued success!!! [ more ]
skn69 Congratulations Eric! next time use 2 pads and be very careful of speed bumps and potholes...your hinny is still delicate and unhealed on the inside. Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
Pouchitis?
Rosie128Rosie128
Rosie128 Thanks everyone! I am going to see the doctor today to see if I can get some answers. Thanks, Rosie [ more ]
vanessavy Bacteria Overgrowth is treated with antibiotics, it works wonders for me. night and day if I go off them. [ more ]
skn69 Rosie, If it is pouchitis they will probably have to put you on flagyl of another anti biotic like cipro but if it is bacterial overgrowth that won't really help a lot...try going onto a clear fluid diet, NO milk products at all, no sugars either and drink tons of fresh veggies juices, homemade broths and veggies soups and start taking probiotics immediately along with brewer's yeast and see if you start to improve in a couple of days.If you do then you can introduce grilled chicken breast... [ more ]
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J-Pouch ForumsK-Pouch Korner
Initial K-Pouch Surgeon..
Randers.USARanders.USA
Adroen Yeah nice find Josh. Really informative too. Ad [ more ]
little eagle What a wonderful tribute to Dr. Kock. He has made my life worth living for 32 years. I can't tell you how grateful I was to have ended up with Dr. Gerber, who was trained by Dr. Kock. Life could have been a lot different, without Dr. Kock's insistence to get this K-Pouch right. Thank you, Josh for this tribute. Barb [ more ]
Dixie from Saskatchewan What a wonderful article. I enjoyed reading it! Thank you for posting it. - Dixie [ more ]
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J-Pouch ForumsK-Pouch Korner
Stupid newbie question
EricEric
little eagle Hi Eric, as an experienced K-poucher I use, as others do, waterproof bandaids sometimes and other times nothing. I pick swim wear that has some design and no one can see anything. In my earlier days I even risked a bikini. No problem. Same goes for intimate moments. A waterproof bandaid will do. That might be your next question I am happy you are doing great and it will get even better with time. It's all in your attitude [ more ]
grandma64 Hi Eric, this is what I use in the shower or everyday use! Johnson & Johnson has a waterproof and germproof bandaid,they're(2.875x4inches)-6 in a box for $2.97 at Walmart! Also at Walmart in the make up isle you can buy these 100% cotton squares called Swisspers that you can place inside the bandaids for extra absorbency, that fit perfectly. Just an idea! [ more ]
vanessavy I use an Ampatch cover for swimming [ more ]
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J-Pouch ForumsK-Pouch Korner
Output Thinners.....
J Jasmine 2
vanessavy If I am really thick I drink broth and grape juice along with coconut water. If I am really stopped up (if I eat a lot of nut breads or raw vegan dishes) and need extra liquid help I will down a bit of Milk of Magnesia. I drain my pouch 2 times a day usually. I eat about 2k of calories a day. I actually like my pouch to be smemi-thick and it usually is so I can hold it easier. If I eat a lot of stuff that makes me runny like sugar I drain maybe 3 times a day. [ more ]
ke353 Thank you! I'm hoping and praying I can get a kpouch as I think it would make my life so much easier, I've just been afraid it won't if I'll still be in the bathroom a lot. The only time I can go a while without emptying my bag is when I take Immodium or eat potatoes/bananas/peanut butter. I know you don't want output to be thick like that with the pouch though. [ more ]
JaniceM Exactly what Jasmine said. After it matures, it will "tell" you when to empty. You'll get feeling of fullness, sometimes a little cramping. [ more ]
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J-Pouch ForumsK-Pouch Korner
Daughter devistated with losing j-pouch...
Art MomArt Mom
JillM Please tell your daughter there is hope. Whatever the outcome, things will get better. I chose to get an ileo after failed j-pouch at the age of 30. Many drs wanted me to have more surgery to save the pouch, but I just wanted to be healthy and get on with life. If your daughter can see the ostomy as the way to get healthy and get back to life, and maybe eventually a k pouch maybe that will help her accept it. I've now had my ostomy since 2001 and have had two babies - now 6 1/2 and 4 - have... [ more ]
JaniceM We've all been there and feel for your daughter. I had my brooke ileo at 21yrs. I put it off for years risking bursting my colon but didn't care. I wasn't ready and that was that. I woke up after surgery and was very sad. I thought I'd never find love. I'm glad she has a supportive boyfriend, I think that is huge. While my emotional state was fragile, I am severely allergic to any adhesive, tape, etc and my skin around the stoma stayed rawed. I was a candidate for a kock pouch and had it... [ more ]
Adroen I wish your daughter and your family all the best. It sounds like if she can get a KPouch, it will be a good thing for her. She would be going through a lot right now for sure though. Sounds like she has a great family, which can only help. A well formed ostomy can give you your life back. But a well done Kpouch can give you your life back, and then some. Knowing the best solution/path to take is really tough though.. Ad [ more ]
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J-Pouch ForumsK-Pouch Korner
Cycling with a k pouch and rectal removal?
EricEric
ke353 After two months my surgeon cleared me to do all activity but told me biking might be hard at the moment. My wound wasn't even closed all the way, but she said it wouldn't cause any damage, it just might hurt. I don't really feel anything at all though! [ more ]
JaniceM Hi...I know what you mean...I ride my bike. To be honest once my bumm healed it actually felt better then before. I would wear a womens menstral pad to give you some padding and if it weeps. Just go a bit at a time and increase each time!!! Have fun!! [ more ]
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J-Pouch ForumsK-Pouch Korner
Poll on K pouches
skn69skn69
skn69 I just checked the statistics and at least that part is working fine so I will be content with it...I am getting the info that I need...Thanks for doing the poll. Sharon [ more ]
Dixie from Saskatchewan Hi Sharon, I've entered my information on your poll on Kock Pouches, but for some reason the Views column still says 0 views. I've also been in there several times to take a look. Is there perhaps something wrong in that the number of people who have been in there to enter their information are not being recorded properly in the Views column? - Dixie [ more ]
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J-Pouch ForumsK-Pouch Korner
Advice please!
EricEric
Adroen Hey Eric, It's good to hear your valve is working so well. Hope that pain settles down fast for you now though. I read in another thread you were sleeping through the night....now that's awesome in itself. If I get to that stage with a KPouch, that will rock(still haven't got one, but really hoping to have a chance at it). I haven't slept through a night since I had my colon out, so yeah, wow that would be so nice. Well, keep healing man is all I can say, and i"m glad it's worked out so well... [ more ]
Eric God love ya! Thanks sweetheart, I'm sure I'm just expecting too much too soon, just egar to get back to living, thanks to your kind words, love, and support, I know I'll be good soon! Next time you're in town, we have got to get together, keep me posted on the efforts to get Dr Cohen to train more surgeons up north, still interested in it, it's desperately needed! Talk soon, big hugs and smooches! [ more ]
skn69 Eric, I answered your post in the general section but your exhaustion is normal post op exhaustion from major surgery plus anema from blood loss and lack of nutrition...you should be on some light suppliments by now but be careful with the iron suppliments because they can irritate your pouch in the begining...try 1/2 doses or every other day and a really good multi vitamin in a liquid or gummy form for now. Since it is summer try blending yourself some fruit smoothies or faux-milkshakes... [ more ]
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J-Pouch ForumsK-Pouch Korner
small sore
K kaydbird
Eric I just had the same thing, I used antibiotic cream, took a few weeks, but it's gone, thank goodness, it's hard enough to recover without worrying about complications! Hope it's nothing major, keep us posted and good luck! Eric [ more ]
kaydbird Its grayish-white but its not like a pimple its like a tiny little ulcer, it goes in, not out. I don't think its changed with the application of the antibiotic cream but the cream does have an analgesic so that at least keeps it from hurting when anything touches it. I'm moving this weekend so if its still here next week I think I will go see the stoma nurse. thanks guys! [ more ]
skn69 Is it a sore or does it look like a white pimple? If it is the white pimple then it is a granulation and it will get irritated, sore and bleed when irritated or while you are intubating. It is what happens when the juncture between the stoma and the skin irritate and continue to 'grow in'...my doctor burned it with silver nitrate sticks...I have a pack of them and do it occasionnaly to keep them at bay. (about once a year). If you are not sure then consult your stoma nurse first before doing... [ more ]
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J-Pouch ForumsK-Pouch Korner
Madison, WI doctor for scope?
J Jasmine 2
Jasmine 2 Thanks Janice....yes I am nervous about someone scoping me without knowledge of ever scoping a Kock Pouch before. So hopefully my insurance will cover this specialist in the future. As, there is always a chance of a perforation with a scoping with a colon or without. [ more ]
JaniceM Hi Jasmine...yes us with long term awesome KPs are very relunctant to have a non specialist scope. I am very lucky, my GI dr in my hmo group is familiar with the KP and does mine. He uses a very small child size cath. He is not able to do it in his office (like the surgeons usually do as you know) so it's done out-patient endoscopy. I can get sedation if I want. It's nervewracking for sure. I don't know if you've called around to find someone. I hit the jackpot as I was in the hospital for... [ more ]
vanessavy Yes some don't but many do. I have 4 in my area that can scope me. 2 surgeons and 2 GIs (in case one is out of town, etc.) Plenty will learn as well. IT isn't hard. The scope is the size of the catheter that is used, you can be awake during a scope as well. [ more ]
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J-Pouch ForumsK-Pouch Korner
Very small ostomy site..
hollyfaith76hollyfaith76
JaniceM The stoma often shrinks down after it heals fully. The surgeon can correct this as it's not part of the valve. A colorectal surgeon should be able to consult and help (they can talk to the KP surgeon). Using a smaller cath is better then nothing as you need to empty. But, yes, poo takes longer to empty and you really have to watch your diet as the cath holes are tiny. Have you tried leaving your 30 french taped in attached to a leg beg? Or taped in and use a cath plug on the opened end? Then... [ more ]
vanessavy This is the guy that makes them for the BCIR patients in our take home kit. Wayne Jacks MWJacks@aol.com [ more ]
hollyfaith76 where do i find the stoma binkies? [ more ]
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J-Pouch ForumsK-Pouch Korner
K pouch and Aderall (methamphetamine salts)
jeanniejeannie
vanessavy Bippy? I am dazed and confused did I write that somewhere? lol [ more ]
jeannie Obstruction for me feels like this: Start having abdominal pain and it radiates all over the abdomen. Abdomen is very quiet. The pain becomes intense like a knife stabbing me then it lets up and then it starts again within 3-4 minutes. Can barely walk. Pain is not so severe I start crying but must put tube in immediately. Since the bowel moves in peristalsis (off and on) a small amout of relief is gained when it isn't moving. Then the longest I have had one is 20 minutes and when it comes... [ more ]
vanessavy What does an obstruction feel like? I thought I had one once but I didn't once the small bowel barium showed no issues. Can you get one done before vacation? [ more ]
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J-Pouch ForumsK-Pouch Korner
KP Anniversary!
JaniceMJaniceM
skn69 Congratulations!!!and many, many more!!! My K pouch will be 33 August 1st...must have been a very prolific time for K pouches...lets keep up the good health and live long and happily. Sharon [ more ]
jeannie 32 YEARS WOW You are amazing and the help you provide to us is very much appreciated. Congrats Janice Jeanne [ more ]
JaniceM Hi, yes, been very very blessed. have been problem free since last and hopefully final valve redo back in 80ies. [ more ]
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J-Pouch ForumsK-Pouch Korner
Bumpy recovery!
EricEric
dpol Eric: I have been one of the very lucky ones, no real problems for 36 years. I just had a procedure done as I had scarring and my opening to my pouch had gotten too small. The procedure went well but I WAS FULL OF AIR/GAS. The problem was that it was not in my system, but just inside my body. My son recently had hernia surgery and they pump you full of gas/air to do the surgery. It was painful for him and I got a huge dose of it in my procedure. It hurt like hell and I was always bloated. It... [ more ]
vanessavy Oh you are early! I had extreme pain around this mark. I was off that pain pump I guess so it made it worse when home. I remember when I had to hold it over night I was in such bad pain I had to crawl to the toilet. I replied to one of your posts before. Some people just have more pain and that pouch hurts as it grows. I was on heavy narcotics for 2 months post op. I was taking 80mg a day of Oxy then went down to about 10-20 for the 3rd month post op. I had extreme gas in the hospital to the... [ more ]
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J-Pouch ForumsK-Pouch Korner
Intubation pain...
hollyfaith76hollyfaith76
vanessavy Yes I had pain. I hated intubating at first. If you think there is damage from inserting you can put a foley and leave on drainage or plug it up in for 24-48 hours to give it a break. My stoma also has a spot that hurts, I think I cut it awhile back and it just stays tender. Another thing that helps is Lidocane, your doctor can call a script in and use it instead of lubrication. [ more ]
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J-Pouch ForumsK-Pouch Korner
Pain during periods
FM Former Member
Former Member I had an endometrial ablation 2 years ago which helped with the heavy periods, but the pains started about 6 months after. Apparantly a side effect of the ablation is trapped blood which can cause pain so is one of the things they are looking at. Only prob with that is the solution is a Hysterectomy! Having an MRI scan on Thurs, so maybe that will give some answers. Just need to find a surgeon willing to do the Hysterectomy. [ more ]
vanessavy I Had Novasure done 6 yrs ago. Maybe an option for you. I no longer get pms or periods. [ more ]
JaniceM Oh I feel ya. Yes, extreme painful periods especially during perimenopause. I was post menopause and still having groin pain. No one would do my hyster either. But I found a kind but very very good gyno surgeon who did it and pulled it through my vagina. Pain gone...more later..pm me if you'd like. [ more ]
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J-Pouch ForumsK-Pouch Korner
Align
vanessavyvanessavy
vanessavy My GI says overgrowth of bacteria in small intestine so I am on cipro now then will switch in 10 days to half a dose then maintain it with Xifaxin (sp). Maybe that will lessen when they remove more of it! (sarcasm about more surgery) [ more ]
Jan Dollar There is no one thing that works for everyone. Sorry they did not work out for you. Jan [ more ]
vanessavy Probiotics make me worse. I am starting to agree with the studies there just isn't enough to prove they help without a colon. I had to go back on a dose of cipro to kill the horrible stuff that was inside my pouch. Doing wonderful actually now. Started 5mg of Prozac for pain and it helps, makes me wired as hell though but I think that will pass after a few weeks like most SSRI side effects do. For now I have to go on and off antibiotics but VSL, VSL DS and Align were ok coming off... [ more ]
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J-Pouch ForumsK-Pouch Korner
Post op pain
EricEric
vanessavy I was on 80 miligrams of Oxy and a fentalyn (sp) patch for about 2 months post op. I was down to maybe 10-20 mg by the 3rd. I had horrible pain up until 4 months, surgical that is. Just like all surgeries, every week it gets better then eventually we start to forget how bad it was. My butt pain I think was the easiest to cope with and I had a donut pillow to sit on when I returned to work about 3 months post op. [ more ]
JaniceM You are right on track. The bumm surgery is brutal in as itself. Having the constant cath starts making the valve and stoma very sore but you gotta do it. Once it's out it will still be sore as you have to empty often. As time goes on and you empty less, it all heals up and gets some rest and settles down. I still get very sore if I hitch up my constant cath for a few days if I'm sick with the flu. It really takes a full 2 - 3 mos just to start the healing. The pouch maturing causes so much... [ more ]
Jasmine 2 Hi Eric...hang in there!!!! I had my Kock Pouch done in 1978, and I think I was in the hospital for 3 weeks hooked up to a suction. They do things differently now. I do remember my butt taking a long time to heal though, in fact back then I was told it could take 1 year, but I'm sure that is different now too. I hope you keep improving and things get better for you soon....xoxo [ more ]
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Testimonials
skn69skn69
vanessavy I think it would be awesome if it was global. I am sure there are people in other countries that are wishing they could have a continent ileo. I see people ask all the time on forums. Doctors without borders but for people with no colons. I do branding, identity and marketing for a living and run my own business that supplies graphics for businesses and homes so sure I could help somewhere along those lines. [ more ]
JaniceM Great idea. I sent a formal letter to all the surgeons on the american side at http://www.fascrs.org/ and NO ONE replied. I think the challenge is huge. It will start with GI dr knowledge, ET nurses (for those like me that were raw from allergic reaction to adhesives, etc.) and the volume of need. I do know that at our Take Steps walk, a top GI dr at University of Irvine recommended only a KP and for his patient to see Dr Worsey at Scripps or Cleveland Clinic. I got referred in 1980 from my... [ more ]
ke353 I think that would be great! Maybe with the help of the internet these days the k-pouch could become a bigger thing? [ more ]
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J-Pouch ForumsK-Pouch Korner
Probiotics & Excess Stoma Mucous
Dixie from SaskatchewanDixie from Saskatchewan
vanessavy The morning is the worst for me. I am too dry to get anything out. I usually drain at noon after I have hydrated. [ more ]
lesrich1 I irrigate all the time.In the morning I often wake up very dry even after irrigating at night. I have eliminated dairy almost completely from my diet and that has made a significant drop in the mucous discharge. That is not the reason I did it; just another plus. [ more ]
vanessavy Lol No I have wetness more after I irigate at night, during the day not that much. Align has cut down. I use one dressing a day. [ more ]
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J-Pouch ForumsK-Pouch Korner
Kock Pouch cramps!!!
grandma64grandma64
JaniceM I am not sure on your surgeon's schedule - I'd check with them. And, it depends on if you take the stretching more slowly. It's 6 - 12 wks or more. [ more ]
grandma64 Thanks for replying Janice! Is there a estimated time for the pouch to be fully matured? Just wondering? grandma64 [ more ]
JaniceM The pouch stretching is the hardest part of the kp surgery. It will continue until pouch is mature. Even a mature pouch can get cramps but they will not last as long as in the early weeks. I still have severe cramps if I've waited too long - but once I interbate, it's all good. [ more ]
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J-Pouch ForumsK-Pouch Korner
Catheter
FM Former Member
vanessavy It's a 30 french that we use Companies are Marlen and the other is Medina The Medina is the one that was actually designed for the kpouch. There is another one on the market that I haven't used and it is very expensive, Weber & Judd. Some people make their own for 2 bucks with tubing from Ace hardware. You can get creative. [ more ]
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J-Pouch ForumsK-Pouch Korner
Fruits and Veggies with BCIR
vanessavyvanessavy
vanessavy My favorite is watermelon and cucumber. Makes water so smooth and tasty since I am a horrible water drinker. [ more ]
Subsky my friend posted a link on her facebook about those fruit infused water, looked pretty cool. Your's looked like they turned out great! I might try this once it heats up a bit...and throw an ounce of two of the good stuff in there with it [ more ]
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J-Pouch ForumsK-Pouch Korner
K-pouch/BCIR stoma
K ke353
ke353 Thanks for the responses. I was thinking there wasn't really a difference between the two. I'm looking into the procedure and I'm trying to get all the information I can so I can make the best decision possible! [ more ]
skn69 Mine looks like a tiny, pink bellybutton and I keep it covered with a folded Kleenex or a band-aid that is flesh-tone. I don,t think that in the long run that it really matters because it is always covered and it does not effect function...as long as the tube goes in without pain or discomfort and you are comfortable with it. As for the pouch, they are all the same, it is in fact the valve that differs in the fact that the Bcir ones have a living collar and the k pouches originally didn't... [ more ]
vanessavy Valve is what is different. I have never seen a continent ileo that didn't have a slit but that is just me! [ more ]
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J-Pouch ForumsK-Pouch Korner
butt issue
vanessavyvanessavy
vanessavy Just checking into the thread since it went OT for a bit but I am doing really good for the past 2 days. I wasn't 3 days prior, went off the antibiotics and switched to probiotics. My pouch was bad and I had the usual glass shards pain shooting up my rib cage and pouch and everything was just pure clear liquid coming out of me. So went on cipro and few hours later I was good. I am now on a sublingual previcid for my severe inflamation in my esophugus and gastritis. My gas is still there but... [ more ]
liz11 Adam.. I don't have a kpouch but had the jpouch removed and "barbie butt" just 3months ago. This pressure and pain you describe was happening to me last week and then like you said it all burst out with fluid everywhere, guess it was an abscess. So Vanessa.. should you have that checked out too as mine was started with what seemed like a blister. I saw the doc yesterday and was told this could just keep happening. I had abscesses while hospitalized and had one drained in another surgery and... [ more ]
skn69 Carrot & apple juice....I forgot...the 2 things that I have found that are astringent enough to 'dry out' a wet gut (read: high motility, over liquidy stool etc)...also, and you may find this useful if you are trying to taper off of all unnatural products, Active Carbon....you can make it yourself by burning a piece of toast but you can find it in pill form at your local health food store...it is another 'grandma's remedies' or in this case, grandpa...in the war when everyone was... [ more ]
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J-Pouch ForumsK-Pouch Korner
K-Pouch questions...?
CatajaCataja
Cataja Thanks... [ more ]
vanessavy They prefer not to but there are some chrons patients on their forum that have the BCIR. Some have been diagnosed after, their UC turned to it after and some had it prior. It is a case by case evaluation is what one general doctor told me when my friend with chrons visited me during my stay. I think it depends on where your issues are. My friend isn't eligible since her problems are all in her small intestines and not the colon. With that being said most don't do jpouches for chrons either. [ more ]
dawn58 I recently got the video from Florida about a BCIR. They told me they do not do it if you have Chrons. [ more ]
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William J. Johnson
bjohnson@j-pouch.org

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.

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

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