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J-Pouch ForumsK-Pouch Korner
Nuval valve
J JanW2
jan15 Sending healing and encouraging thoughts. You’ve been through woefully too much and you deserve the best. Janet [ more ]
JanW2 All sounds great, can understand feeling cautious, hope the time flys by with no hurdles. Hoping you’ll be the best ever real soon. [ more ]
Kim S Appt went well. Staples removed, catheter removed. They filled the pouch with some water and had me move around. No huge leaks. I have to put the catheter in every 3 hours (only once during the night as long as I don’t eat late) for 3 weeks. Then I can go longer between intubations. Everything is still a little tender. The stoma still needs some time to heal. It’s a little sore. Doc wants me to call him in 3 weeks. I’m cautiously optimistic. Hard for me to get my hopes up yet. [ more ]
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J-Pouch ForumsK-Pouch Korner
Rectal area pain after BCIR
FM Former Member
skn69 I understand Robin, My puppy was my solace while growing up sick. I got when I was 12 and she died while I was going through chemo at age 28...I never got to say goodbye... We love our animals because they devote their lives to us and our happiness so we give them our all...all of our love and devotion...but we cannot save them once their time has come, we can only make then comfortable and give them our love and gratitude. I hope that your puppy heals and that she (?) spends long years by... [ more ]
Kim S Are you a member of the BCIR Facebook group? I believe I have seen posts related to surgeons in that area. You could do a search of posts. P. S. I’m glad your dog is feeling better. [ more ]
Former Member ❤️
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J-Pouch ForumsK-Pouch Korner
Burning/Pain where Anus used to be
D dpol
Former Member That sounds wonderful. What a neat thing to do. It must be just beautiful there. Before this pain there wasn’t much I let my surgeries interfere with. But the pain changed all that. Sometimes I wish I were paralyzed from the waist down so I wouldn’t be in so much pain. At least then I could be active again. Pain is like no other handicap. It is like being in prison with no release date and no one knows your there. It is a lonely place to be. I can’t leave and I’m not up for visitors. Your... [ more ]
skn69 Funny how we have so many overlap symptoms. Not the nerves but the seizures and constant cysts... they are both mostly under control with seizure meds and constant cystectomies. The EDS causes a lot of musculoskeletal pain but good chiropractors help a lot...so does exercise in the water. I do 2 months intensive work on it every summer. Brugge is where I teach in November. This is my 3rd yr there teaching marketing there. I give a conference on Happiness in Courtrai Belgium the same... [ more ]
Former Member Brugges. I looked that up too. A place that has cobblestone streets. Have you been there? [ more ]
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J-Pouch ForumsK-Pouch Korner
Vitamin, ferritin, b12, D3 deficiency
R Rickiroo
Rickiroo ❤️
Former Member Yes! For years I was so tired all the time. I had K-Pouch 30+ years and now BCIR. Anyway a doctor put me on Nascabol nasal spray once a week and prescription strength vitamin D and it changed my life. Before that I slept til noon, took a two hour nap and went to bed before nine. After starting Nascabol I started getting up before 8:00 a.m., no nap, and staying up til 10:00. I felt like a teenager again. I still do only now I’m stuck in bed by 2:00 in the afternoon because I’m in so much... [ more ]
bcirray Rickiroo I suggest you take you medical advise one step further and make an appointment with a Hematologist (blood doctor). He/she would be better trained than a GP. Ray [ more ]
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J-Pouch ForumsK-Pouch Korner
Permanent Ileostomy to a K-Pouch or BCIR?
kristencosnerkristencosner
JanW2 Emilyjt Will be sending you prayers and the best of thoughts for your upcoming October surgery. You have been through a lot and deserve the best, keep strong .💕 Let us know how you are doing please. Janice [ more ]
EmilyJT I had had a total colectomy due to slow transit megacolon and rectopexy due to prolapse and my small intestine was connected directly to my rectum. This led to chronic diarrhoea and rectal spasms which were constant and debilitating. After much research I decided to be the 4th person in Australia to get a K Pouch. I underwent my initial surgery in early February. Due to many complications I have undergone about 15 surgeries since, the most recent of which was creating a temporary ileostomy... [ more ]
JanW2 Robin Good idea on the cup of water! I also use the enema bottle suggestion that was given now. Lots of restrooms are not offering any selves or hooks anymore, let alone sinks in the handicapped spaces. Just saw that today. We are now seeing a lot of unisex bathrooms where you share sinks in the middle of the room and no walls at all! Just a 4 foot little door.Horrible idea, I ran into that in Europe a few years ago too. Schools are doing that also, oh my, no where to go in times of stress... [ more ]
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J-Pouch ForumsK-Pouch Korner
K-Pouch Gastroenterologists in Los Angeles
Art MomArt Mom
Goldfarb There is a new doctor that works out of Olympia hospital that works with Dr. Don Schiller. His name is Dr. Pouya Benyamini and his number is 310-526-0290. I believe he is familiar with all pouches including the kock pouch. [ more ]
BillV Dr. Beart did my J pouch surgery at Mayo Clinic in 1983 and I highly recommend him. I do not know how active his practice is or if he has retired. He could recommend a gastroenterologist for your daughter. Since I have FAP, I get a scope exam annually by my GI. The person’s diagnosis usually dictates the frequency of scope exams. Another excellent surgeon in LA is Dr. Don Schiller, but his specialty is the BCIR. [ more ]
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J-Pouch ForumsK-Pouch Korner
Chronic pain management
R Rickiroo
Former Member I have had three different Stimulators. The first two did nothing to help rectal area pain. The third one and the one I have now is called the DRG. It goes down through the sacral vertebrae instead higher along the spine. It covers the s3 and S4 area. My pain use to start below tailbone and run down where my rectum use to be. The higher area of pain gets %100 relief. The lower lead unfortunately moved so it doesn’t help as much. I would totally recommend the DRG from Abbott. [ more ]
Rickiroo Anyone, please help. Thank you my email is rickiroowho@yahoo.com [ more ]
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J-Pouch ForumsK-Pouch Korner
November is 44 years with a Kock Pouch :-)
KP 1974 Kock Pouch
dgs Thanks, I appreciate the info! [ more ]
skn69 Hi Debby, Thank you. I am a survivor like all of us here, with just a bit more experience than most people...that gave me time to experience more disasters! What is a hook up kit? I start with a large makeup bag and add a free mini tubes of lube, 2 or 3 different sizes of tube (24, 30 and 32 plus a folley Cath), a guide wire (a stiff semi rigid wire that you can place inside of your Cath to help push it past twists or turns in your valve... and once in you can pull it out) , transparent or... [ more ]
Patricia Walker ❤️
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J-Pouch ForumsK-Pouch Korner
40 years
skn69skn69
LuckyLady Hi again. I was treated at Toronto General then operated at Mount Sinai when my doctor, Robert Stone, became Chief of Surgery there in 1977. I lived with a conventional ileostomy for 18 months before getting the K-pouch at CHUS in Sherbrooke (I lived in Montreal at this time) in February 1979. I was also warned about the unknown long-term affects, possibility of recurrence of the UC in the pouch etc. Wonderful surgeon Dr. Devroede, a great stomatherapist, Soeur Pierrette Cote, at the... [ more ]
skn69 I always say that this is not a sprint but a marathon...we have to look at the end-game, the long term results and not the immediate difficulties...yes, we suffer, have surgeries, treatments and hell...but in the long run we achieve a better quality of life with our pouches than without them...they are worth fighting for, as all of us here know...we just need more surgeons willing to do them. Sharon [ more ]
jan15 sharon--thanks for the tribute to how you and your doctor worked together. very sweet! and thanks for your never ending determination. it is inspiring. janet [ more ]
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J-Pouch ForumsK-Pouch Korner
Odor from stoma
T ToothFairy
LadyTay97 I don't know if this is helpful but the only time I ever noticed an odor is when I'm using the bathroom. Once I pull up my pants I don't notice it. And no one has ever pulled away from me or said anything in regard to if they noticed something funky. When are you noticing this odor? Do you have anyone you could ask if they smell anything? What does your doctor say? Have a marvelous day. [ more ]
ToothFairy Jan15, during the week, I wear scrubs while I’m working. I use cotton pads underneath an adhesive which allows me to change the pads throughout the day when they become saturated. I typically only wear the Ampatch on the weekend when I’m in regular clothing because they are less noticeable under form fitting clothes. I have noticed the odor while wearing both kinds of coverings. My fear of others noticing the smell is because I work in very close proximity to other people. I am a dental... [ more ]
jan15 I also don’t think other people notice. Could you try not using an Ampatch for a while and see if the smell dissipates. I happen to have quite a bit of mucus so I use nursing pad, which conveniently adheres to my under pants. Some days I need to change it more than once. I also think that would be better for your skin than having the ampatch on all the time. [ more ]
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J-Pouch ForumsK-Pouch Korner
everyone list best trick to enter full/tight pouch
D dpol
sldrx Where to buy catheters: first, check with your insurance company because if your supplies are covered, they may have a preferred distributor, like Byram Healthcare. Medicare does cover continent ostomy supplies and so does UHC — I'm sure many others do as well. Second, your surgeon would tell you what size catheter you need. Typical sizes are 28FR and 30FR. Marlen and Medina are popular brands of catheter, 15 inches in length or longer. Direct suppliers for catheters and other stuff: just... [ more ]
temoty Could someone give me a link so I know where to buy one of these catheters? [ more ]
Shavon I was boiling the catheter so it would soften and slide in easier and cause less pain. I wait for it to cool down to room temp before using it. However that stopped working for me so now I’m back to freezing. I’m also finding luck with a smaller catheter- although it takes forever with the smaller holes. A large part of my issue is waiting too long to intubate like LadyTay said. I just started back working and I’m not comfortable intubating away from home yet. Even when I don’t wait it’s... [ more ]
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J-Pouch ForumsK-Pouch Korner
k pouchers: do you wear a Medic Alert bracelet and what does it cite?
J JLH
Arlene B66 I wear a medical alert ankle bracelet which says continent illeostomy contact & name & number if my surgeon plus med alert #. [ more ]
WillLive4ever Yep, that is the main function for the Medic Alert> as in being unconscious and taken in to the ER or worked on in the field. I have not had a new one but now I have a reliable surgeon that is not only proactive but knows how and what to say. But we are living in this different world it seems and even being conscious I have had ER doctors ignore my plead to consult him in a crisis. Now today I just hope they would look at my Medic Alert Bracelet or necklace. I am planning on getting one... [ more ]
LadyTay97 When I went to the ER I was conscious and admittedly they didn't look at my medic alert either. Hopefully if someone is unconscious they would look for and at it. It bewilders the mind that the ER staff would not take your written information. The nurse did take my written information I had but wouldn't keep it until I told him to keep it. Then he did until he finished inputted all the information. But he did take it. And when he gave the paper back, I gave it to the doctor who used the... [ more ]
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J-Pouch ForumsK-Pouch Korner
K Pouch rotation for failed nipple valve
lagoonabeachlagoonabeach
skn69 P.S. Yes, the BCIR guys do use a Binky to keep the stoma from closing up. They work up to a bigger size over a period of time if needed. It has helped a lot of people and is worth the try (anything is worth the try to avoid surgery). Why is your stoma closing up? Is it just shrinking or is it granulation closing it off? Sharon [ more ]
skn69 I had my pouch flipped over by Dr Cohen at Mt Sinai in 2008 after a couple of previous revisions and a failed revision here in France in 2000 where my stoma 'sunk in' about 2 inches into my abdomen. It twisted like a corkscrew and made intubation a nightmare. It took me 5 yrs to go back to Canada and have it fix by Dr C...So I did a lot of damage to the valve. Dr C first tried to change the stoma site and bring it back up to the surface (that worked great for 2 yrs) then I started having... [ more ]
lagoonabeach ❤️
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J-Pouch ForumsK-Pouch Korner
Cramping-obstruction
A angilanr
Arlene B66 I have had pouchitis in the past, have had puch since 1979. This is different - I think that from taking aleeve for bursitis for weeks I became constipated - so I am pushing fluids & it seems to be moving along.... [ more ]
Kim S Just curious, where was your surgery done? I’ve never had pouchitis, but it certainly sounds like this could possibly be pouchitis. You might ask your doctor about taking Gas-X or something similar. It might help. [ more ]
Arlene B66 Am experience terrible cramping. Stool still moving but feel like adhesions are causing issue. Heating pad helps - any other ideas? [ more ]
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J-Pouch ForumsK-Pouch Korner
From J-Pouch to K-Pouch
KS Kirsten Schwartz
Kirsten Schwartz Jan, thanks for the input. I'm now decided to give my pouch another year; if I can't stand it, I'll go back to an ileostomy, which I'm also researching. I really appreciate your post. Kirsten [ more ]
JanW2 Hi Kristen, Jennifer have you a really good idea of what life can be with a Kpouch! Of course all are different. I got my K after 2 Jpouchs.I was left with a severe motility issue and went from an altered diet to just a handful of items I can digest and/or pass through that 30 Fr tube. Jen is so correct about telling you that is the only way to pass gas also. All of a sudden your belly is huge and you are frantically looking for the John.It has now become problematic to get supplies in a... [ more ]
Bodoni I hope things are ok with you. I am a long-time k-poucher and now have trapped gas pains. I have taken a few gas-x tabs. Nothing seems to work. I always worry about a blockage. Any ideas? [ more ]
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J-Pouch ForumsK-Pouch Korner
Diet (Salmon/Cod)
S Sunshyne89
Sunshyne89 Hi Winterberry, No need to apologize ; ). I do enjoy sweet potatoes and japanese sweet potatoes. Unfortunately, leafy vegetables cause me gas and bloating. I appreciate your suggestions that have been very helpful. I have more ideas to work with. [ more ]
Winterberry Hi, Sunshyne89. I have a j pouch! I'm sorry I wasn't clearer! If broccoli and cauliflower are not options, how about sweet potato? They are more nutritious than white potato. You could make SP fries by slicing, tossing with salt, olive oil, and bake until crisp. Or poke holes into sweet potato (no need to peel) and microwave. A good easy snack. Can you eat leafy greens? [ more ]
Sunshyne89 Hi WInterberry, I am going to try the spinach and see how my body reacts to it. I know broccoli and cauliflower are not an option for me. I have tried them in my early stages of the BCIR and it gave me terrible gas and bloating. Do you have a BCIR or Kpouch? How long have you had it, Thanks : ) [ more ]
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J-Pouch ForumsK-Pouch Korner
Fart
skn69skn69
skn69 Yes, it would be kind of fun to have some sort of 'duck whistle'' in there to let out air... [ more ]
Bubba1028 That’s funny and scary at the same time! Glad there wasn’t a leak or any other surprises! O had horrible gas pains on the way home from work today and was wondering why we can’t fart like normal people. I think we have enough muscle to keep stool in but maybe not gas? So weird, but hey, I’d go with it! Maybe it’s bc you e put in your dues for so many years (post surgery)! 🙌🏽 [ more ]
BillV A fart now and then makes those of us with pouches seem almost "normal". Happy to hear that you did not blow a valve. [ more ]
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J-Pouch ForumsK-Pouch Korner
Dr. David Dietz
SA Sydney AZ
ljk Hi, I met Dr Dietz and felt very comfortable with him. He is very knowledgeable about his procedures . I have a malfunctioning J- pouch because of a angulation in the pouch and plus a lot of scar tissue from previous surgeries. He first recommended another pouchoscopy, he wanted to view with his own eyes. So I proceeded and then explained that the J-pouch can not be revised and mentioned this K-pouch that I do not have a lot of knowledge about. Ok , now I am even more concerned the stoma... [ more ]
dpol Sydney: I am very sorry for what you have been through! A few thoughts 1. I would contact other doctors to see if something can be done to get your kpouch back. I am a big fan of Dr. Beart in Glendale,Ca. Someone said his is no longer operating, but I think he does consultations and has trained 2 wonderful doctors under him. 2. If you can not get your Kpouch back, then maybe they can adjust your opening to make it more comfortable for you. 3. Though I can not speak for all men, I can speak... [ more ]
Jan Dollar Sydney, sorry about your unfortunate turn of events. Does not sound at all what you were expecting. However, please remember, this site is for support and advice and we are not to wage campaigns against doctors, hospitals, etc.. It is OK to voice your displeasure, just try not to let it go too far. If I recall, you had a history of a lot of complications like Crohn's, fistulas, etc., and you were looking into a number of "last resort" treatments, like hyperbaric oxygen and growth hormone. [ more ]
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J-Pouch ForumsK-Pouch Korner
Looking for advice.
KS Kim S
Kim S Janet:Thank you. I will definitely have some hints. Woodstock69: I’m not giving up yet! Especially since I’ve been wearing Ostomy bags for the last month. [ more ]
JLH kim-Sending white light for your surgery tomorrow and empathy for one arm k pouching. I’ve done it, although not very well. looking for techniques due to upcoming shoulder replacement. Janet [ more ]
woodstock69 I can hardly believe you are still fighting to keep the Kock! You have endured too much. hugs [ more ]
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J-Pouch ForumsK-Pouch Korner
Cathetar folded again, No Surgeon or real Support in Oregon for BCIR or K-Pouch.
W WillLive4ever
LuckyLady I agree that the catheters are not as firm as the once were. and the holes are somewhat larger, making them bend more easily. In my experience, the catheters soften with use. I change them every couple of months, or when they start to fold. I must use the technique of introducing the catheter through the valve with a smaller catheter inside as lead, however. Comes up against a wall otherwise. Thanking skn69 for the much-needed support when I was in hospital with a blockage 20 months ago. [ more ]
WillLive4ever Dear Sharon, I have fortunately been doing very good. I understand about the hardened caths and have had them eventually crack in places where they cut into me so I am checking them usually ever since that incident. But lately I have been using the Medina instead of the Marlen as for me it seemed the Marlen were more easy to bend or soften. I take that point about the frozen caths seriously and I can not quote who gave that info to me now but I think it was someone that would know.. but I... [ more ]
skn69 Just a note Will, This happens essentially with the new Catheters which is why I keep reusing the old ones for years (up to 10yrs or until they fall apart)...they stiffen with age and make the path easier to navigate. I just cracked 2 old ones while out of the country for work. Freaked right out...had to use a new one (I travel with 3 kits thankfully...1 in purse, I in carry-on and 1 in backpack for security and reassurance...2 out of 3 broke!) that was soft and weak...I ended up taping the... [ more ]
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J-Pouch ForumsK-Pouch Korner
Sucesses for continent ostomies
JaniceMJaniceM
skn69 K pouch since 1979, numerous redos due to an other underlying disease (Ehler's-Danlos...a congenital collagen deficiency that that means that I do not heal like other people, my body does not make the 'glue' needed...so I fall apart at the seams). I moved across the Atlantic and started a new life in France thanks to the k pouch. I teach, lecture and travel. I would have never dared to do any of these things pre-pouch and wouldn't have had the courage with an ileo. My pouch gives me liberty,... [ more ]
EmilyJT Thank you, I'm currently deciding whether a KP is better for me than an ileostomy and it's looking like the way to go! [ more ]
EmilyJT ❤️
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J-Pouch ForumsK-Pouch Korner
Rectum Removal Optional?
EmilyJTEmilyJT
JLH yup, no more colon with the k pouch. you'll have a barbie doll butt! sore after the surgery, but no more need for it. when is your surgery scheduled? did your surgeon train under dr. kiran in nyc? he had mentioned training an australian. we'll be here for you. janet [ more ]
LadyTay97 I was not given an option. I had colon cancer and every bit of the colon had to be removed so there was no chance that the cancer could come back. That included the rectal area. Good luck and take care. [ more ]
Raj I dont think they give you an option to keep the rectum atleast I wasnt given any. My surgeon told colitis has a very chance of flaring up in the rectum so its best to remove most of it. Its not worth having another surgery in future if the rectum developes ulcers. The pouch is a substitute for the functions of rectum. [ more ]
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J-Pouch ForumsK-Pouch Korner
UC vs Crohns
AB Arlene B66
Arlene B66 I have a friend who has had a k pouch since 1980 (Dr. Gelernt Mt. Sinai) and has never had pouchitis. and she empties every 8 hours! So I am at a loss as to why that is. There are new meds coming out all the time so I hope that I can maintain my pouch for years to come. [ more ]
Shavon March, this is what my GI told me. Nothing brings out Crohn’s like a pouch. Often patients have Crohn’s that only presents UC symptoms so it is misdiagnosed. Some patients can go forever and never know. It happens about 9% of the time. However, when patients get a pouch - any type of pouch- Crohn’s will more likely surface. Doctors don’t know why but they suspect it has something to do with the bacteria in stool being held in the body. So the options are lose the pouch. The bowel symptoms... [ more ]
LadyTay97 Anyone near Philadelphia? [ more ]
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J-Pouch ForumsK-Pouch Korner
Cipro now ineffective for Pouchitus
marriedguymarriedguy
Jmarc Flagyl effectiveness seems to diminish over time. New GI doc is adamant that flagyl is NOT appropriate for long term maintenance due to neurological complications. He is suggesting Butyrate enemas (which is very expensive and not covered by insurance) or Rifaximin. Has anybody tried either of these therapies? [ more ]
marriedguy Thanks Janet, while i I am sure diet changes couldn’t hurt, Dr. Bo Shen at the Cleveland Clinic had suggested that pouchitus seemed to also show as seasonal almost as an allergy. When I last saw him (quite awhile ago now), he said there was still a lack of understanding why this was. I may try and irrigate a little more(per your idea) but don’t generally change that or my eating habits throughout the year. So there is nothing that really “triggers” it like different foods, less care etc.. i... [ more ]
JLH Mike I'm really disappointed to hear you have pouchitis w the K pouch and so sorry for you. My J failed, due to pouchitis and other such complications, and went to the K. The stoma nurse at Cleveland Clinic suggested to irrigate very often, apparently to make certain that bacteria isn't forming--honestly I'm not sure why. At any rate I irrigate almost every evacuate and in three years no pouchitis. I also continue on my diet of no refined sugar and reduced, if any, simple carbs. That helped... [ more ]
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J-Pouch ForumsK-Pouch Korner
Updated Food Selection Tips Requested
E EJT
JHendrix Wishing you both well. I might have added that I use a heaping tablespoonsof psyllium husk after 3 meals and before bed mixed with a little water. Alot of people prefer metamucil as it dissolves in water while the husks are a bit like drinking sand! (Also some have questioned the wisdom of the before bed one as it likely gets me up on the night. But, like I've said, I can be stubborn and stuck in my ways. Maybe just experiment.) [ more ]
EJT Thx so much for your time. I’ll look into it!!! [ more ]
JHendrix Although I'm not as convinced about the 'food allergy' idea, I would share your humble opinion that the higher starch/sugar intake contributes to pouchitis. I don't know if there is actually evidence to suggest this but I think I remember reading it somewhere on the University of Massachusetts's IBD diet where people who ate higher starch, sugar (including fruit) had greater pouchitis incidence. If he's eating those foods for thickening, I can offer my humble opinion again for what it's... [ more ]
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J-Pouch ForumsK-Pouch Korner
NUVAL continent ileostomy valve
KS Kim S
skn69 Kim Have you read the post about anti depressors? Not sure if this is your case but I found it interesting that for some people it may explain unexplained leakage. ... just in case, check it out on this forum. I hope that it is nothing serious. Sharon [ more ]
Kim S Well, things were going great after the 2nd revision (June 18th), but I am back to experiencing leakage. At first it was very small amounts, but it has been increasing in amount and frequency. The only good thing is that it never leaks while I sleep. I have an appointment for an ileoscopy on October 24th. This has been a very trying 12 months. After almost 37 years with a K pouch, 35 of those years with very few issues, I'm so frustrated. I may put the NuVal back in. [ more ]
JLH Kim--fantastic news and congrats. the bruising feeling lasted with me for many weeks and indeed it is bruised. would be good to know if there is anything one can do to relieve the problem. hope you are able to rest and stay cool to continue the healing. best wishes, janet [ more ]
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J-Pouch ForumsK-Pouch Korner
Probiotic
amosamos
Raj I take sporolac powder sometimes when I have to go out . Expect that I just take lactifiber 2tsp daily. Though I have VSL3# too but I dont really see anything extra for those extra bucks it costs me so i've stopped buying anymore of it. [ more ]
Bubba1028 I think you’ll hear mixed reviews. I think most agree Vsl3 is the best but it’s super expensive and some insurances don’t cover it (most of them!). Some docs recommend certain ones, other docs say anything is fine. One of my docs suggested Floristor and that’s worked well for me. My dads doc suggested Citrucel or something like that bc it has a certain number of microbes. If you do some research online you’ll find a suggested number that you’re supposed to hit- like 10 billion or something... [ more ]
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J-Pouch ForumsK-Pouch Korner
New J to K Transition
K kcmintz
skn69 Hi, welcome to the club... I've had my k pouch for 39yrs and have simplified all of my procedures. 1. If it has too much fiber I either chew a lot or blend it with an immersion blender. I don't eat fruits after carbohydrates (digestive and gas issues) but have no problem with carbonated drinks. .. I prefer the slightly sweetened flavoured waters. Gummies? They are a whole food group for me... I just consider that they are concentrated jello and enjoy. My 1st yr and any time I've had revision... [ more ]
dgs Always great to have a lot of choices to try out what works best for you! Hard to believe I've been using the same type of stoma coverings for 40 years. Brands may change but that's it. The cheapest and most comfortable route for me has been using nursing pads. When I'm at home I'll just put one inside my panties as most panties today have stretch and keep close to our stoma. I also cut up each nursing pad into 4 pieces(I buy Parents Choice at Walmart, very reasonable!) I use 3M transpore 2... [ more ]
Kim S Casey: I'm very glad to hear that things are going well. I have had a K pouch for almost 36 years (I was 21 when I had the surgery). I'm in northern Virginia. This group is great for offering useful tips and encouragement. Welcome to our group! [ more ]
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J-Pouch ForumsK-Pouch Korner
Kock pouch/BCIR
D dz20
Former Member Sorry folks when I find an interesting article on my Apple lap top, I cut and paste the address and e-mail it to myself. Then I can pick up the e-mail on my PC which is connected to a printer, and print a copy. But when I try to share this web site using the Ctrl V, somehow buried in that url is a link to my e-mail. Here goes again, I hope this works. This article is written by a Doctor who has thoroughly researched and tested the efficacy of use of H2O2. Here is the link ... [ more ]
skn69 DZ20, I started eating a 'dissociated food diet' around 1990 (it was fashionable at the time) and discovered that my pouch loved it. I ate mostly animal protiens (meat, fish, chicken, sea foods etc plus some hard cheeses, soya and nuts) along with tons of raw and cooked veggies, had my fruits and fruit juices for breakfast or 4pm snack and avoided too many carbs. I gave myself 1 carb day a week where I allowed myself to really enjoy my bread, pasta etc and I maintained a happy and healthy... [ more ]
vanessavy I eat everything at 2 years out. I had a rough 2 years but now I am golden. No issues at all with my BCIR. [ more ]
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Can a Jpouch person use ketomin for weight
A Art
Art KETO....been getting E mails from so many approaches addresses that lead to same advert endorsed by Shark Tank financiers, and just not sure of the free bottle with $29,99 s and h [ more ]
MJ0917 Do you mean Ketamine? We use that in the ER for rapid sequence intubation for respiratory distress...not sure how that's used for weight gain. [ more ]
LadyTay97 I've had limited experience with Ketamine. I was given the drug during procedures I was undergoing. So I never had the drug without being under doctor supervision and only for the limited time of the procedure. From what I know about Ketamine it is an anesthetic and a dissociative drug. And as with all drugs can have side effects including weight loss and weight gain. I'm not a doctor so getting medical advice is a great idea. Please be careful and I wish you the best. [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Updated K pouch/ BCIR sx 2018
J Jeannedk
ET_RN Dr Kiran (from the Cleveland Clinic) Herbert Irving Pavilion Room 8th Fl. 161 Fort Washington Avenue New York, NY 10032 Phone: 212.342.1155 http://asp.cumc.columbia.edu/f...118&DepAffil=Surgery Dr. Kiran is an expert in the Kpouch world. He has a team of staff in the hospital and the clinic to help teach and answer questions before and after surgery. Lots of successful Kpouches and improved quality of life for people who had failed Jpouches. [ more ]
ET_RN ❤️
See 1 reply...
J-Pouch ForumsK-Pouch Korner
notes from a k-poucher of 40 years
D dgs
dpol Had mine done at Mayo in 1975. For 37 years no problems that required a doctor and I stupidly did not even know any doctors who even knew what a Koch Pouch was. Then all of a sudden I couldn't get my tube in, not good! My opening had gotten too small to let the catheter in. The wonderful Dr. Beart , who got to Mayo a few years after my procedure and is now retired, went in and spread the opening out. Dr. Beart was not sure how long the fix would last as it was a very unusual problem, but it... [ more ]
dgs 40 years with no revisions, impressive!! Wow! Wonder how many others out there with their original procedure? [ more ]
Arlene B66 So nice to know that I am not the only 40 year Koch poucher. I have a friend who is also 40 years, she has never had a any additional surgery for her pouch. I love to hear what works & what doesn't. Thank you all [ more ]
See all 11 replies...
J-Pouch ForumsK-Pouch Korner
Sleep etc.
ReenieReenie
skn69 Hi girls, Welcome to the club! It is a very elite and special club that has some very basic "rules for survival" 1. What goes in, must come out! And in our case through a 12inch tube with 3 flute holes! So Chew chew chew! 2. Certain foods are "friendly-enemies" meaning they taste great together but do not digest well together. I separate my carbs/starches (bread, cake, pastry, pasta, rice, potatoes ...) from my proteins (meats, fish, chicken, seafood, eggs...) because of their different... [ more ]
JLH reenie and janice--have you checked out sharon's posts on diet? she has gone through the worst of everything and has figured out what food works and doesn't. and she lands back on her feet and smiling so i think her suggestions are worth considering. when i had probs intubating, due to the hernia, the doc suggested i stand and lean ever so slightly forward. it works. obviously crimp catheter! pee before you intubate, even if you don't think you need to, as that eases up some pressure on the... [ more ]
JanW2 Hi Reenie and all, I am at 9 months and have to intubate about 8 times in 24 hrs. High level of gas makes intubation almost impossible for me, except lying flat, so I was advised to clear it more frequently to avoid that. I have not done any carbonated drinks since 2005! I also need to maintain a very low fiber diet to keep the flow from clogging constantly. GI feels I may improve some, but I have IBS issues along with this, so maybe not. Light white grape juice and as much water as I can... [ more ]
See all 8 replies...
J-Pouch ForumsK-Pouch Korner
Surgery in February
ReenieReenie
JanW2 Hi All, To Tommy, my great sympathy, hope you are healing. Kpouch is so misunderstood. I got mine last July by Dr Dietz at University Hospital in Cleveland, who had left CCF . It is my understanding they no longer have a specialist for kpouch at CCF. I was a patient there for 19 years in colorectal dept. My gastro is still there though , but Dr Dietz is quite a master at The K that I will definitely continue seeing him. Sending prayers to you and your husband j [ more ]
skn69 I am so, so sorry...this is awful...not the loss of the k pouch but everything that you are going through with your husband...I am sure that he knows what a wonderful wife he has and how lucky he is that you are standing beside him through all of this...not many have or would. I do not know how he is handling all of this, it is a huge strain on his body and is going to tax all of his reserves so please make sure that he is well supplemented in order to get all of his old energy back. My... [ more ]
JLH what a frightening experience and I’m so sorry for the frustrations and of course needing to settle for less than what one expects and deserves. I too had peritonitis, although it was due to a failed one step j pouch surgery and the only option was the external bag, which I had for a year. Peritonitis takes a lot out of one and be as patient, as best you can, with the recovery. It was some years later that I got a k pouch and I share your frustrations with doctors not knowing or caring about... [ more ]
See all 13 replies...
J-Pouch ForumsK-Pouch Korner
Kock Pouch Complications
MJ0917MJ0917
skn69 Thanks Janet, What you describe is a peristomal hernia...a hernia close to or right over the stoma area...causes it to no longer be held tight by the muscles and move, twist or bend. Yes, I made a list and can add a few other here... 1. Pouch slipping off of the wall...happens often post-op, after a trauma or 6 weeks post op when the temp sutures are absorbed (if they use temps) and the pouch is not yet attached to the abdomen...it can slip "off the wall " either totally meaning it is... [ more ]
JLH hi all--excellent list and great explanations with refs. thanks so much. also glad you are not having any complications at the moment!! sharon had also made a list some time back. perhaps she recalls the post and can include it. would add hernia adjacent to valve. in my case it dislocated the valve, which resulted in difficult insertion of the catheter. the surgery reinforced the area around the hernia, although some surgeons stitch in a mesh around the valve. let's all stay well! janet [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
bleeding
Rosie128Rosie128
skn69 It happens Rosie, It is usually nothing...you nick or scrape something inside and then there is a copious amount of blood for a few hours or days...do not worry...it usually goes away rather quickly. Try dipping the cath in plain tap water next time or use some vegetable oil. Sharon [ more ]
Rosie128 Thanks, Janet. I was so nervous I called and spoke to Nurse Susan Kay and she reassured me that because that area is so vascular, a small cut will make for a good amount of blood. She recommended irrigating with ice water so that the cold would constrict the vessels and to use lots of lube. It is much better now, almost completely gone from what I can tell. It is like PTSD, when I see a lot of blood in the toilet, I instantly flash back to my UC days..... It makes me realize that although I... [ more ]
JLH hi--sorry for the bleeding. it is always frightening. when i had difficulty intubating due to the hernia/slipped valve problem i frequently would nick the valve or some region near it, and this caused bleeding. a scan to assess the hernia assessed that this was the source of bleeding. the doctor called it an ulcer, but discussion with him narrowed it down to the catheter causing the bleeding. perhaps ulcer is a loose term, i don't know. i was super careful, used lots of lub and it healed on... [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Exercise Restrictions
C Chute
skn69 I've got a k pouch that has had more revisions than I can remember...hernias (4-6), peristomal hernias (3), falling off of the wall (3xs +)...the list goes on...not to mention all of the valve problems. So, do I do abs? Yes...core exercises, pilates, yoga...the whole 9 yards. But, I have learned that I need to allow my body to heal completely first, to not think that I am superwoman, that I can lift, bend, yank, stretch etc like before...I need help until I don't and I need to remember that... [ more ]
Arlene B66 I do yoga, use to jog, now walk fast, use weights, swim, etc. And I have had a K pouch since 1979. [ more ]
Arlene B66 ❤️
See all 5 replies...

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