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J-Pouch ForumsK-Pouch Korner
Pain everyday
Cathy ACathy A
JaniceM hi...BillV is right. And, remember the pouch sits on the right, next to bladder. If that is full and the pouch, it can cause pain. I'd be sure to empty more often (both urine and KP). Especially after you eat. Are you irrigating the pouch during interbation to be sure it's all the way empty? Even mild pouchitis can cause pain. Try a gastroenterologist if the surgeon is baffled. Also, during my 30ies and 40ies I had to be on birth control pill due to extreme menses that caused so much pain in... [ more ]
vanessavy I live with chronic pain. I had celiac plexus nerve blocks that helped a great deal. [ more ]
skn69 Jeannie, You can also try Dr Cohen's office at Mount Sinai hospital in Toronto...he has an IBD and intesintal disease center that handle's these sort of things very well... You can litterally tell his secretary that Sharon from Paris has reffered you. You can email all info to him and ask for a consult. Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
Can your Kock pouch hide other problems?
jeanniejeannie
JaniceM Hi Jeanne, I'm very sorry you lost your KP. My understanding is adhesions develop for some people from day one of many types of surgery and become a bear to deal with. Surgeries to remove them make more adhesions. Don't play the what if game...just heal now. You did everything you could. There is so much ostomy support nowadays. Hopefully they have new and improved adhesives and products to make it easier. Wishing you a full quick recovery. Best, Janice [ more ]
skn69 Hi Jeannie, I am so sorry that you had to go through this and lost your pouch in the end...did you have any other pouches done and removed or was this your first one (sorry I am brain dead at the moment and remember nothing...) I never had a j pouch but went strait to K...when needing valve repairs and bowel resections etc I asked my surgeon if I was at risk of short bowel and he informed me that no, if he had to create a whole new pouch there would still be enough to go round...the pouch... [ more ]
BillV Jeannie, I am sorry to learn that your kock pouch did not work out for you. It is my understanding that Medicare will cover more than the “standard” number of pouches, but your doctor will need to provide written documentation for the number needed per month as well as document this in your medical record (should Medicare request a copy). I cannot suggest anything about your stoma itching since I have a BCIR. You should be able to get suggestions on the UOAA Discussion Board. Hope everything... [ more ]
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J-Pouch ForumsK-Pouch Korner
K-pouch after suspected crohns due to fistula?
K Kelsie
Kelsie Katie, I sent you a PM. [ more ]
kaydbird Hi Kelsie, Dr Remzi did my k-pouch. AT the time, Fazio was still the head of the department so he was a little easier to get in to see than now But Remzi really is great, I'm very thankful he was my surgeon. I live near cleveland so the clinic was not a hard decision to make. I have not had any complications with the pouch itself. I have had little rocks in my pouch twice. First time, I actually had obstruction symptoms which is how they found them. the way my pouch is the opening to the... [ more ]
Kelsie Katie, may I ask who did your kpouch? Have you had any complications? What did you have done to try to heal the fistula? Who did you go to? Was the only reason your dx was changed she to the fistula? How bad was your fistula? Was it painful? Thank you so much for your response! [ more ]
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J-Pouch ForumsK-Pouch Korner
New thing and I hate it!
vanessavyvanessavy
vanessavy I have nothing wrong with me so it is just nerves. I can also still do kegals down there so sure there are plenty left. Anyway, with FAP I get screened for every thing under the sun every 6 months so all good. [ more ]
skn69 There is also another possibility that we often forget because we are closed up down there...an abscess. It could be a sterile abscess or cyst or something else that is growing where it shouldn't. It can cause a feeling of heaviness, like something is in there (in fact it is!) and wants to get out! An ultrasound can often find it easier than any other study. I had 2 tumours 5 and 8 inches in the 'Cul de sac de Douglas', the area behind the rectum in the bottom curve of the spine (sacrum... [ more ]
Jasmine 2 My thoughts on this: Possible over sized pouch; Pouchitis; Phantom urges; Are you close to menopause....I think estrogen loss causes less elasticity of the muscles and tendons holding the pouch in place; Did you have a hysterectomy? [ more ]
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J-Pouch ForumsK-Pouch Korner
BCIR and Kpouch covered 100% by my insurance..
PouchomarxPouchomarx
Jasmine 2 Cleveland Clinic would be my choice, since it's right near you. They are tops in Kock Pouches there. Then you are close if anything should happen and close for appointments and scopes. Good Luck!!!!! I am a Mayo Clinic person myself, love that place and their knowledge and expertise. That is where I go, it's closest to me, and I had my Kock Pouch done there 36 years ago. At the moment, I am dealing with valve issues. So I will be going there to see what the next step is. A scope... [ more ]
vanessavy My BCIR is solid. I go to CC to see doctors there and see Dietz when I thought I had a valve issue due to c,diff. So, follow up can be done there like any other doctor. I have had nothing major happen to have to go to Florida. I did a check up 2 years out but was good to go. Consult with both and go with your gut. What I did. Also, you think it sounds like a long time but trust me, this is a major surgery and you need that care. I did not feel ready to go at the end and it was hard. I went... [ more ]
BillV Pouchomarx, it appears that you have made the first major decision: I do not want the bag. Here are my thoughts on your other concerns: 1.You are fortunate to have the Cleveland Clinic nearby. It is definitely a significant plus as far as follow up care, if needed ,which is best provided by the doctors that did your procedure. Plus, there is no travel involved. 2.If you have not already done so, go to the BCIR program website: www. bcir.com. There you will find a lot of information about the... [ more ]
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J-Pouch ForumsK-Pouch Korner
hospital stay and time off work ?
PouchomarxPouchomarx
skn69 Can you do any work remotely? Maybe some work via computer? You cannot go back sooner and won't want to either...Trust me...6 weeks is about the earliest that you can imagine and even then at part-time only... Sharon ps...rushing it is not a good idea [ more ]
Pouchomarx i cant miss 2 months of work..what am i going to do? I'm a manager at a car dealership in parts dept. only 3 people in my department counting me and they are fairly new. not to mention the short term disability pays nothing and i only have 2 weeks of vacation time available through this year. And how does child support work? they take out of my monthly bonus check but if not working i get no bonus. I am covered 100% though till end of this year so at least the surgery will be free.. [ more ]
vanessavy This is major surgery. I mean MAJOR. It was the toughest thing I ever went through. You need at least 6-8 weeks off of work. [ more ]
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J-Pouch ForumsK-Pouch Korner
Gurgling
amosamos
vanessavy Cut out sugar and bread. I can't eat yogurt, just turns into a mess of gas and gurgles. Diet plays a huge role. [ more ]
skn69 Hi Amos, I don't know (or remember) if you have a k pouch or a BCIR....but here goes. Gurgles and noise is often caused by gas and liquids more so than other stuff...So, firstly...I wouldn't personally care (I am a teacher and honestly it has never been a problem...students fart & burp in class, other teachers have less than perfect etiquette and make noises and in social situations like dinners, coctails and weddings I figure the gurgles are so much better than total incontinence that... [ more ]
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J-Pouch ForumsK-Pouch Korner
Booked surgery for k-pouch
A ashbre
skn69 Ashbre, Congratulations and welcome to a very select club... You are experiencing growing pains and that is normal. Try to keep your diet to a gas-free one that gives you full nutrition without those nasty gas bubbles. I stuck to chicken, fish, and lean meats plus pureed veggies but you might not want the mushed carrots for a while, they are hard to get rid of... Drink your prune or grape juice after meals to keep things loose and flowing and add some hot green tea to your diet for extra... [ more ]
BillV Ashbre, I am happy to learn that your surgery went well and that you are now “bagless”. You will appreciate your new pouch more as time passes by. You are only one month post-op, and it typically takes several months for your pouch to mature and for your internal plumbing to adjust. There are several over-the-counter anti-gas products (like Beano) and prescription medications that your doctor can prescribe for gas. Add new foods one at a time and keep a diary of your results. I found that... [ more ]
ashbre Hello Rosie, Sharon and Bill, I have had my surgery and it went well. 6 1/2 hours though and very painful but, the nurses and Doctors were just amazing. Dr. Cohen and his staff were unbelievable. I did have to be re-admitted with an infection and high platelets but, I am still kicking!! It is so odd without my outside pouch. I always expect something to come flying out of my stomach but, I would not change it for the world. Sharon, I was talking to one of the nurses at Sinia about you and... [ more ]
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J-Pouch ForumsK-Pouch Korner
Friend went from BCIR to Kpouch
vanessavyvanessavy
vanessavy I have Military insurance, nothing fancy. It was in network. Palms of Pasedena takes many health insurance plans. My one friend just got on the affordable health care and nobody at CC takes is Blue Cross plan he got on with it. So, depends on your health insurance and if Palms takes it or the other BCIR surgeon in LA. [ more ]
Jan Dollar Wouldn't it depend on whether your doctors and facilities are in network? The procedure itself is only part of the equation. Many plans do not allow out of network care when there is similar and adequate care in network. Most of us could not afford the the out of network costs. Jan [ more ]
vanessavy BCIR is covered by health insurance. I am on Govt insurance and got it done. The bill was 96k and I paid 300 deductible, the kpouch can be 100k at CC. [ more ]
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J-Pouch ForumsK-Pouch Korner
HELP!!!
grandma64grandma64
vanessavy I get itching in my valve and drives me nuts. I slap the crap out of the area and works. [ more ]
grandma64 So I found out the reason for my internal abdominal itching, I feel really silly about telling you guys this, it might help someone else out, here goes! Well, I take a few prescribed medications, one being Gabapentin, well I started getting real nauseated on Wednesday afternoon so I didn't take any of my meds, by evening I was so sick, throwing up, head pounding, bad back pain, tired and fever! All day Thursday & night, then Friday morning I started having bladder spasms, by noon I knew... [ more ]
skn69 Grandma, Did you have any sort of hernia repair with mesh? If so, then that could be the cause of it...a form of rejection of the mesh...the other thought although it is very, very rare is necrosis between the pouch and the abdominal wall...it could cause all sorts of symptoms. Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
Marlen 30 Fr 15 inch catheter....
J Jasmine 2
Jasmine 2 Dr. Eric Dozois didn't see me yet. Radiology had to do something to get my catheter in so they did it this way so it would stay in and I can pull it out enough to empty it. I flush it out to each time and then push the catheter back in flush to my stomach and use a eye drop cap to insert into the end of the catheter to plug it so it doesn't leak. I have a gauze bandage rolled around my hips and taped in 3 places to hold it in place and wrap the gauze around the tip of the catheter to hold it... [ more ]
DG78 Is the catheter attached to a constant drainage bag, or capped off somehow? And what do you do to empty the pouch? Why do you think they left the catheter rolled up inside? Has Dr. Dozois done K-pouches before but just doesn't do them regularly? I'd be nervous too, but hopefully since your first pouch worked so well and for so long, things will go well for you. I'm still trying to figure out why so many of us are having problems with our pouches 30+ years out. Debbie [ more ]
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J-Pouch ForumsK-Pouch Korner
Kpouch recovery
G Gigi68
Bodoni First of all, where do you plan on having the surgery? How many has the surgeon done? What is his/her success rate? Can you afford to travel? Have you explored the BCIR version of the K-Pouch? It is done in St. Pete Florida. Could you go to the Cleveland Clinic for the standard K-pouch? You really want to choose a place that has done lots of this type of surgery. Why do you want a K-Pouch over the J-pouch? You need to do lots of homework before you even think about when you can return to... [ more ]
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J-Pouch ForumsK-Pouch Korner
Dr Andreas Kaiser USC LA, CA
JaniceMJaniceM
suebear Dr. Beart at Glendale Memorial is retired from surgery. He still sees patients in his office, though. Sue [ more ]
dpol I do not think I have pouchitis because my output is very consistent and not runny. My only issue is that my pouch does not seem to hold the same amount it used to and when it gets kinda full my valve doesn't work as it should. Thus I have to do special things to enter my pouch that I can not do in a public restroom. Thanks [ more ]
Bodoni I would warn anyone who thinks they may have pouchitis - to first contact your surgeon / GI doc. They may or may not order a scope. Flagyl and or Cipro usually works after a 12 - 14 day dose. I am not against probiotics or vitamins. But if you do have pouchitis and you let it get a foothold - you could end up very sick. Then it will be even more difficult to cure! Trust me, I have had a K-pouch since 1976. [ more ]
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J-Pouch ForumsK-Pouch Korner
Questions about K-Pouch
S smp
BillV I am sorry to hear about the medical problems you are having. The presence of Crohn’s rules out a K pouch or BCIR for many, but not for everyone with it. A qualified surgeon would need to make that determination. As regards your key question, it is not necessary to have a rectum in order to get a K pouch or BCIR. Many people who have had these procedures converted from an end ileostomy to a K pouch or BCIR for the kind of problems you are experiencing or for other quality of life issues. I... [ more ]
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J-Pouch ForumsK-Pouch Korner
Questions..
AB Arlene B66
DG78 My naturopath had me take it when I felt like I was getting pouchitis. I buy Mycostat Complex Caps by Professional Formulas from the PureFormulas.com website. Their website says 'Nutritional Mycotoxin Formula - Mycostat Capsules are specially designed to assist the bowel control Intestinal yeast and Fungal overgrowth'. [ more ]
vanessavy Never heard of it. What is the main purpose on taking it? [ more ]
DG78 Sorry, I haven't been checking the site for awhile and just saw your message. I start with 3 capsules after meals twice a day, and then after a week cut back to 2 caps twice a day for 3 more weeks. Then 1 cap twice a day for another month or two. (My naturopath does things very cautiously). In the beginning the Mycostat would cause me to burp and had an odd smell, but either the burping went away or I got used to the smell, because it didn't seem so bad after awhile. [ more ]
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J-Pouch ForumsK-Pouch Korner
Pregnancy with K pouch
Rosie128Rosie128
Rosie128 Thanks Lesrich, It's good to know that there is someone on here that went through it with no problems! Thanks for your feedback [ more ]
lesrich1 I have had 2 pregnancies with my Kock. The first with twins. Both were C-sections. I probably ate and acted the way all pregnant women do. My intubation of the pouch didn't change, although it was a little difficult to see the stoma underneath my belly Just remember to chew your foods well so they don't get caught up in the catheter, keep hydrated and enjoy! [ more ]
Rosie128 Thanks Jan! I did have two vaginal births before, so I am hoping that the third will go as smoothly. But I know what you mean about expecting the unexpected!!! LOL! [ more ]
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J-Pouch ForumsK-Pouch Korner
K pouch surgeons updated
W woodstock69
woodstock69 Update regarding Dr Beck in NOLA. He revised a kp, valve and stoma in November in 2.5 hrs. Excellent surgeon, unfortunately complications post op lead to drain for old hematoma and abscess drain, longer than expected stay, on call weekend staff not part of Beck's team and did not meet any patient needs, dismissed the cries for help and overlooked the abscess which was not dealt with for 4 days post op and still recovering and on TPN. Indwelling catheter was in much longer due to the abscess... [ more ]
JaniceM Hi Donna, yes, you were right. Dr Worsey said he is beginning to train Dr Bermeister and having him assist. ! Thanks Josh! [ more ]
Donna H That's strange that someone would tell you that since on Oct 29, Dr. Bermeister was right there assisting Dr. Worsey with my surgery. And like I said, Dr. Worsey said he is young and smart and on his way to be a KP surgeon. Hey, maybe after a few surgeries he decided it wasn't for him or maybe he is moving on to another location. And good luck with your surgery, Janice. It's sounds like it is very complicated and I am wishing you the best. You are doing your homework and getting the best of ... [ more ]
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J-Pouch ForumsK-Pouch Korner
Travelling with a K-Pouch
Dixie from SaskatchewanDixie from Saskatchewan
skn69 Bill, I have always traveled a lot on long-haul flights (6-10hrs) and at the best of times my pouch goes only 4-6hrs (and that is if I am very careful of what I eat the day/night before)so not emptying it on an airplane is kind of out of the question. I have occasionally put my pouch on strait drain during a flight to avoid any problems when the pouch was acting up or when it was in trouble...I have had my pouch for nearly 35yrs and at the time they hadn't put the 'do not drink this water'... [ more ]
vanessavy I don't irrigate but I was told when traveling to use bottled water, even in the states since every city and state has different water systems and a angry pouch might be pissed off basically I used toilet water ONCE and that is right when I got C.diff so might be a coincidence. [ more ]
BillV I believe what lesrich is referring to is a general caution to irrigate only with potable water. Airplane lavatories have a warning to not drink the water from the sink faucet. I always take a couple of empty bottles thru security and fill them at a drinking fountain, thus avoiding the need to buy overpriced airport water. I always empty my pouch before boarding and have yet to use the airplane lavatory. [ more ]
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J-Pouch ForumsK-Pouch Korner
Immodium
vanessavyvanessavy
vanessavy I just pop one in the morning when I head to the gym. I don't eat breakfast since I am training so I eat lunch after the gym. [ more ]
vanessavy Immodium doesn't thicken my output, that is the last thing I want. It just slows it down so my guts are less spadmodic and filled up quickly. I follow Paleo diet so I don't eat grains like oatmeal or peanut butter. But I have tried that before and I poop more. Fiber makes me go so. Never sure how jpouchers swear by the stuff. It clears me out! [ more ]
Bodoni Some foods may slow down time and thicken output. Oatmeal, bananas, peanut butter, etc. works for me. Have you tried Lomotil? [ more ]
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J-Pouch ForumsK-Pouch Korner
happy new year!!!!
D dpol
skn69 Ditto...I didn't even notice! [ more ]
dpol Reading my post now, I can see I was over served last night. The second "all" was supposed to be "have". [ more ]
skn69 Thanks Dpol, To you and yours a happy and very healthy new year....and to all of us...let our pouches be kind to us and our valves stay unkinked and continent! Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
Severe abd pain every day
jeanniejeannie
jeannie Thanks Sharon I think the urinary leg bag is the same one. Seems like when I worked med/surg as a nurse I remembered the one I came home from Scripps hospital with was the same urinary bag used in every hospital. I will look in Edgepark medical supply's. I just read an article on ballon dilation for stricture (usually in Crohns disease)Only 1 of 20 dilations did not need repeating. Some within a year. I guess 4.5 years was lucky. What will I do when I am an old lady and can not walk thru... [ more ]
jeannie Thank you Vanessa I just got a package of tubes from Edgepark I will look on the site. I have to drain my stools so it does not pile up at the stricture and hurt like hell when it trys to get thru. I am now putting my legs up on the bathtub with my belly in the air to relieve the pain so it is bearable. Takes about 20 minutes each time. Yesterday I had 2 occurrences. Inserting tube and plugging it will not help. Oh the stuff we put up Talk soon Jeanne [ more ]
skn69 Jeannie, I use urinary leg bags...not sure that there is a difference betweent them and the ones that they give me in the hospital...same difference...I connect and tape the connection (since it poped open and splattered my girlfriends brand new convertible!)...In a pinch you can use the tip cover that comes on the end of your 60cc syringes as a plug...works perfectly and is the right size...just tape it in!...hope that this is over soon and that you can go back to your usual, normal life. ... [ more ]
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J-Pouch ForumsK-Pouch Korner
Salads
vanessavyvanessavy
vanessavy You would think! I am really overweight. I have put on 20 pounds since I had surgery. My doctor said I am SUPER absorbent lol yay. not. Oatmeal doesn't thicken me up too much. Fiber like that does the opposite to me. Makes me go! If I eat popcorn, forget it, I poop forever. [ more ]
skn69 Yum...hope that it went through you ok...have you tried eating oatmeal? It really slows me down...I know that it isn't on the paleo diet but being that your guts have a mind of their own and that things seem to be taking a high speed train through your body...you may need to consider 'thickening foods' to help your body hang onto stuff a bit longer or you are going to become severely malnourished. Sharon [ more ]
vanessavy I ate a whole baked apple in a sugar free dumpling. That was a first. [ more ]
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J-Pouch ForumsK-Pouch Korner
Soreness when removing catheter
L lindak
JaniceM Linda....I have had my KP since 1981 and I never had a scope until 2008. It found is that I have a stricture (constriction) at the base of the valve. It can cause my cath to pinch and get "hooked" when trying to pull it out. I have to breath and wait a bit to then gently pull it out. I don't know where you are located but I have a great GI dr (Dr Abousaif) who can scope KPs. And, we have 3 continent ostomy surgeons in So CA. Did you already go in? Any update? [ more ]
lindak Thank you to all for your suggestions. I will give the new catheter a try--and also the suggestion for the olive oil. Sometimes I notice resistance when removing the catheter when there is something stuck in the holes at the end of the catheter--I don't recall having that issue before. Otherwise I don't have any other problems, so I'll ask if a scope is necessary. I did get photos from the scope and that showed the location of the bump way back when. Thanks again. [ more ]
vanessavy My stoma always hurts when I pull my catheter out, mainly the last 1/3 inch before being out. Feels like a nerve though so I think it is that since I don't see anything or feel anything if I have my finger in there. Scopes show nothing either. [ more ]
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J-Pouch ForumsK-Pouch Korner
Gurgling
amosamos
vanessavy I am very loud, if I eat dairy, sugar or carbs it is worse since bacteria keeps forming. I take ativan nightly and it doesn't stop mine. You might have bacteria overgrowth or just gas. Mine hurts when it gurgles so it sucks. Immodium has helped me a lot lately for it. [ more ]
skn69 I'm sure that I am noisy but I don't really notice it after all of these years....it is just part of my life and, well, as my late sister-in-law used to say...Everyone has gas. Own it and enjoy it...turn it into a contest if you can...who can gurgle louder???? Just don't let it bug you...life is to short. Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
Pregnant with k-pouch or BCIR
G Gitika
skn69 Wow! I am impressed! Lawyer, 3 pregnancies and an indwelling cath for the duration! Ok, hats off! So nice to hear this kind of news... Sharon [ more ]
lcolche Hi, yes; I am the one: I carried 3 pregnancies and had 3 healthy babies after the K pouch. However, I had to keep the catheter inserted and taped in place after the first few months of each pregnancy. Although that was uncomfortable (I worked as an attorney during all those pregnancies and had that catheter sticking out under my clothing and tried my best to mask it with my clothing but was very self-conscious about it), it wasn't a problem. My understanding from my K-pouch surgeon had been... [ more ]
JaniceM Hi....there is a KPer who had children during her pregnancy and needed to keep the constant cath inserted. Since I had my KP at 19, the surgeon said if I were to get pregnant, I'd have set up the constant cath as the uterus pushes the positioning of the pouch temporarily. It shouldn't be a problem after the baby is born. [ more ]
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J-Pouch ForumsK-Pouch Korner
? leaking valve
C camy
JaniceM interesting...I have had to bear down using my abdominal muscles for 34 yrs. My surgeon said no problem. He said it would be the same to the valve doing sit ups or exercise and not to worry. Having the cath inserted protects it anyway. Unchewed food or pills, etc will often pop out of stoma sometimes days or weeks later. To help gets whats trapped inbetween the valve and stoma as you pull out cath (or if you've had to take cath out and reinsert it), after the final interbation, I take tissue... [ more ]
skn69 Pretty much the only 'no-no' that Dr C told me was to never intubate without lube...other than that I irrigate regularly if the output is thick and I pull out the tube and clear the holes if they are stuffed with stuff...I am a really bad chewer so it happens often and that causes my valve to get damp afterwards... I know that you should not be to rough with it, don't yank or pull if it gets stuck inside and never force the tube in if it won't go... Sharon [ more ]
Dixie from Saskatchewan I asked my surgeon after my latest revision, when he was with me when the indwelling surgery tube was taken out & while I was putting my normal catheter in to intubate for the first time if it hurt the valve to bear down (grunt) to get the contents out of the pouch & he told me it was okay to do this & it wouldn't cause damage to the valve. I had always wondered about that in the past. I'd be interested in hearing what other Koch pouch users have been told about this, as Bodoni... [ more ]
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J-Pouch ForumsK-Pouch Korner
Kock Pouch around the corner
DH Donna H
JaniceM Oh Donna, I'm very sorry to hear Dr Worsey couldn't perform the KP. I do like the fact that he didn't attempt something he didn't feel he could do successfully. I am seeing Dr Kaiser at USC in Dec as a 2nd opinion after I see Dr Worsey. I'll let you know what I think about him and his exp. It looks good on paper. Although I beleive the T pouch is struggling, but he does KPs. There is a great deal of support for the ileostomy.....I wish you the best. Janice [ more ]
vanessavy Are they testing you for C.diff or small bowel bacteria overgrowth? Those have a potent smell for sure.But I understand completely. I wore a leg bag for a few weeks and swore I smelled like a moving dumpster. It was just in my nose all the time. I was turned down based on not having jpouch issues actually by Remzi's dept. But I will say if you want to see Remzi book it now. The wait is about 6 months to see him. [ more ]
Donna H I am not sure what the odds are about a successful Kock Pouch with the issues I have but I feel like the Cleveland Clinic would be the first place for me to check out. I am sure they have dealt with circumstances like mine- adhesions aren't that rare. It does scare me that the CC rejected both of you, Vanessa and Billy. It seems like that is a GO TO place for so many and then you hear about cases like you. I do know that there are many successful stories too. My current surgeon thinks the... [ more ]
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J-Pouch ForumsK-Pouch Korner
what is the difference k or j pouch
F foxwoods777
JaniceM A "tube" is actually a medina or marlen catheter. Like the urostomy ones but size 30. To empty the internal reservoir, the catheter is inserted into a stoma (it's flat on abdomen) while sitting on the toilet or standing over a sink or something similiar. The poo filters through from the pouch, through the catheter into the toilet, etc. It does not hurt. Since the stoma is active tissue, you may need to keep a pad over it for mucous wetness. [ more ]
Jan Dollar A j-pouch is an ileal pouch connected to the anus. You need to have your anus, sphincters, and several inches of your rectum left in order to have this procedure. The Kock pouch (k-pouch) is a continent reservoir ileostomy. The BCIR is also a continent ileostomy, but with a different valve system. For both of these, an external appliance is not used. They are emptied periodically using a tube. Jan [ more ]
skn69 Hi Foxwoods, First off, so sorry for what you are going through with your ileo...it sucks when it doesn't work properly... So here is my best response to your question: The original pouch was the k pouch which was a continent ileal reservoir tacked onto the abdominal wall with a hole for the valve and a stoma on the outside. You use a catheter or tube (reusable til it breaks)+lube to empty out the pouch using gravity + irrigating it with water when the contents become too thick. pluses? [ more ]
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J-Pouch ForumsK-Pouch Korner
STONES IN POUCH
D dpol
JaniceM Fred, I have had my pouch since 1980. If I can't get gas out, while the catheter is inserted and I'm sitting on the toilet, I move my body positions (bending down, side to side, etc) and I've ALWAYs have had bear down using my abdominal muscles to get gas out. And, of course, irrigating will help move gas too even is poo is thin. [ more ]
Fred25 For the past three months I have had multiple elongated, black stones in my pouch. My Doctor had them tested and they were made of calcium and magnesium. It is quite scary because lots of times I have to twist and turn and push and pull the catheter several times before I can get the stone out, without damaging the valve. The stone invariably sticks out of one of the inlets of my catheter a FR28. I can no longer get a FR30 into my pouch. And for the past 3 weeks I have had a problem getting... [ more ]
lesrich1 the assumption is; the stones didn't begin as large.The grew to that size and the surgeon nor I didn't want to risk them getting bigger. The pain did go away. I was taking medication for osteoporosis for sometime at the time the stones were discovered. I am convinced that the stones were an accumulation of undissolved medication in the pouch. [ more ]
See all 11 replies...
J-Pouch ForumsK-Pouch Korner
Pouch update
vanessavyvanessavy
Edee Got it :-) It looks really healthy. Hope you are feeling better today. Rach [ more ]
vanessavy The attachment is in the footer of the last post I did above yours [ more ]
Edee Hi Vanessa, I couldn't find the pic of your pouch? I had a pouchogram a month ago and all was well. Days later I had a major blockage and had to see stoma nurse to fix it(first and LAST time!!). She basically sussed out where the route to pouch went, via finger in stoma and rammed the catheter in. Apparently this was the 'only way' to do it and 'not to worry' as pouch will not be damaged?!. Well, I was so relieved and and but nearly in tears too as there was so much blood and it hurt like... [ more ]
See all 7 replies...
J-Pouch ForumsK-Pouch Korner
Considering K Pouch in Oxford UK
A AlexanderC
Edee Hi Alex, i'm sorry you've had your pouch removed. I had mine formed beginning of July and have had problems too. Mainly not being able to get catheter in, about once a week this happens and nightly indwelling catheterizing irritates and bloats my stomach up, so only do the nightly thing when I have to. I use the bougie to unblock - the condre(sp?)end and post medina cath down. I didn't originally like suing the bougie but after the stoma nurse ramming my inside with my catheter the bougie... [ more ]
Hev Hi Thank you for your replies, especially AlexanderC, I think you are probably right, I have already had 4 operations and a number of EUA to get this far and the next step will hopefully be my last! I am used to the ileostomy now, had my first approximately 20 years ago for 4 years than a reversal to a J Pouch for 16 years when i had my temporary one installed 2 1/2 years ago! I know I can eat pretty much anything I want, am able to work and play, go on holiday and lead a full and active... [ more ]
AlexanderC Hello there A couple of things: - The BCIR is note performed in the UK - only K Pouch, which is similar but not the same - The only surgeons who will perform this are in Edinburgh and Oxford. This means that if you have a K Pouch each time there is an issue, and you should expect some, you will need to travel to either Edinburgh or Oxford. This costs time and money and inconvenience that you should not discount. I had my K Pouch done in Oxford by Prof Mortensen and I have a lot of time and... [ more ]
See all 33 replies...
J-Pouch ForumsK-Pouch Korner
HGH for fistula & chron's
SA Sydney AZ
Jan Dollar I would think that the problem with the studies you show your doctors is that they do not necessarily translate to your case. I did a search at http://clinicaltrials.gov/ and it appears that the only current studies with HGH and Crohn's involve the pediatric population, not adults. THAT may be your primary problem. I found the same issue with PubMed searches of published results. There actually isa great deal of research going on regarding IBD. I know it would be wonderful if it was a simple... [ more ]
See 1 reply...
J-Pouch ForumsK-Pouch Korner
Indwelling Catheter - Valve Slippage
A AlexanderC
Edee Hi Everyone, it's been 3 months post op and after quite an optimistic start it seems its all gone down hill. Well, ups and downs but mainly downs. I had a pouchogram on Tuesday - where they inject dye via cath and pouch showed to be healthy and no problems. I inserted the cath myself - no problems and again an hour later - no problems. Then Wednesday it was more difficult to get in. It used to be where it would get stuck a 1/3 way in and Thursday morning it got stuck half way and I tried and... [ more ]
skn69 One can lead to the other...if your pouch is unthethered (ananchored) then it can 'twist' the valve when you move around (I cannot lay on my left side, makes my pouch flop right over...and it hurts like crazy when it does)...if it is down it can pull on the valve and pop it open and cause sudden leakage that you might not have otherwise...I had both the pouch down and a hernia and it twisted up into the hernia (don't ask how, I do not know)...thet got me emergency surgery with my surgeon on... [ more ]
Edee Hi Sharon, Thanks Sharon, I wondered that too...I mean why would it be fine to access lay down but not so stood up? Must be positional or valve....or knowing my luck both! lols... Soon find out. Rachel [ more ]
See all 23 replies...
J-Pouch ForumsK-Pouch Korner
Blog post about continent ileo tips
vanessavyvanessavy
vanessavy I have more tips that I need to add. I always remember things days after I write it out A young kid reached out to me who is having a kpouch done in NYC and I felt it was time to write something up, especially to help him out. Glad you like the blog. I try to blog 2 times a week. [ more ]
Dixie from Saskatchewan Hi Vanessa, I found your blog very helpful to me. Even though I've had my Kock pouch for many years now, there are still things to learn from others like us. I think I might try to look for the water bottle & nursing pads you mentioned. Thanks! - Dixie [ more ]
AlexanderC Great blog. Very informative. [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Best Probiotics for Kpouch?
D dpol
skn69 Have you tried stinky French cheese? Works great! (no joke)...one of the reasons that the French are fighting so hard against the European Union to not be forced to pasturise thier cheeses is because it kills so many of the healthy bacteria...they don't drink unpasturised milk (although it is availible if you look for it)...but most good cheeses here do not use pasturised milk...And the population that consumes them seems to have a much lower rate of intestinal problems and... [ more ]
Bodoni I use Culturelle in the mornings and 1 small bottle of DanActive in the evenings. These work well for me. Some use Align. Or Acidolfolis (sp?) And then there is VSL #3, which is pretty expensive, I hear. [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
Zantac for pouch spasms?
B Bodoni
skn69 Good to hear that you are doing better Bodoni, I am sick as a dog today...don't know what happened...sudden, horrid pain, I dropped to the ground and stayed down for ten minutes...felt like my whole stomach twisted, dry heaves, spasms and it felt like I had a Charlie Horse in my stomach...then it subsided and came back 5 minutes later...lasted an hour til I threw up...calmed down and I have been unable to swallow an ice chip today...been over 24hrs since I ate any solids and fluids don't... [ more ]
Bodoni Thanks, Sharon. I think it has settled down since taking the Zantac. Of course this could be just a coincidence. I will give it a few more days and take it from there. If it gets worse, I will schedule a CT scan and hopefully see what is going on down there. How are things across the pond? Take care. [ more ]
skn69 Wow! I love it when we make discoveries...I am so glad that you found something to settle down the spasms...I would just never have thought that zantac would speed up parystalsis...I would have thought the opposite! I just hope that it is a permanent fix for you and that the spasms are over. Sharon [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Living with a valve slip
A AlexanderC
Edee Hi Alexander, I'm having exactly the same problems as you! Same hospital and same surgeon. How are you today and are you going ahead with surgery? Rachel [ more ]
AlexanderC I meant 'path' not 'oath' (although there is often swearing involved!) If anyone else has experiences of keeping the catheter in for weeks and the outcome, I would welcome your insight Alexander [ more ]
AlexanderC Thanks Sharon. I have had a scope and scan and it is just slightly slipped which means problems intubating and occasional seepage. Since getting out of hospital last week it has actually got easier - I have found if I lie back, relax and breathe slowly I can intubate without using the bougie to find the oath. One thing you said is very interesting - about keeping a catheter in for 30 days. I was considering that but was not sure if it would work? Sounds like it might be worth a try. One... [ more ]
See all 7 replies...
J-Pouch ForumsK-Pouch Korner
Leak in pouch
SA Sydney AZ
skn69 Great news! Always go to the experts...and don't wait around...it is your health that matters. Sharon [ more ]
Sydney AZ Thanks! I just spoke with Clevleand Clinic and both Dr. Shen (GI) and Dr. Dietz (Colorectal Surgeon/K-pouch specialist) said to start Humira again. He will take me off of it if I need surgery. I hope this info helps someone else in the future. I have been trying to get an answer to this question for over a week!!! Thanks for the support [ more ]
Sydney AZ Thanks Sharon Can you tell me who Jan is? I didn't see her on this thread. Thanks! [ more ]
See all 9 replies...

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William J. Johnson
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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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