kaydbirdAre you using cold or warm water? I find that much like doing the dishes, using very warm water is much better. Additionally, sometimes after I squirt water in I will let it sit for a few seconds by keeping my syringe in the end of the cath before letting it all back out again. [ more ]
LadyTay97At home I kneel in front of the toilet because of my postnasal drip I have a lot of gas and I think this contains things (spatter) better. I have rarely emptied my pouch in a public restroom but when I have I would stand. [ more ]
LadyTay97Thank you so much for the information. I appreciate it. [ more ]
readannI was hoping soon but today the resident told me I have to start the clamping here. I am surprised as the stoma nurse never mentioned that. I am ready to go home soon as I have severe nausea and I’m not sleeping and would rather deal with that at home. But apparently I’ll be here until at least next Wednesday or Thursday. ladyTay, the purpose of the clamping is similar to what you are saying to grow the pouch in the last two weeks the catheter is in. I’m not sure why we do it this way, but... [ more ]
jan15hum, wonder why the difference. I think starting to clamp after two weeks will help you once the 24/7 tube is out. maybe stoma nurse knows if this is the way they have alway proceed. when out of hospital? j [ more ]
jan15my stoma does bleed a bit but nothing to worry about. mine also drips and produces much mucus. I do use nursing pad, which is less than 25$ a year (target brand). there are reusable pads. don't know of medical ones that insurance covers. the medical ones/insurance covered, for sex, are bulky. ask stoma nurse. you can ask the stoma nurse as I simply can't recall, but possible you are producing more mucus because stoma, valve and everything else is still very tender. It took weeks, into two... [ more ]
readannThanks, Jan! Luckily, my electrolytes have been regularly tested for years, so now is no different. I drink a lot of electrolytes and eat salt! Great too though! Especially since I take a lot of drugs to speed motility. after I’m discharged I’ll followup with the stoma nurse shortly after to come back and get the catheter removed and learn how to intubate. She told me I can contact her any time with questions. Through all my surgeries, my hospital (NOT community) stoma nurses have been... [ more ]
PouchomarxDr Dietz is my surgeon now if i ever need anything, he was trained under Remzi and when Remzi left Cleveland for NYC, he told me to only see him. Hes at University Hospital right down the street from Cleveland Clinic. [ more ]
skn69You need to join the group because it is a closed group...so, join first and then you can ask...there are a lot of people on it who know him...you should get some good info and advice... [ more ]
sldrxSharon, Thanks for the suggestion. What I need is information from K-pouchers Dr David Dietz has treated. I did not see a way to do a search on Poucherlifestyle's posts on Facebook for info on Dr Dietz. I do not want to become a member of the Facebook group, but maybe you know a way to search their posts...? [ more ]
readannThank you! I have done a lot of research, read every study available, and obviously have spoke to my surgeon numerous times. I’ve already come across your blog in the past. for me, I’ve already decided I want one, but it is up to the results of a recent test whether my GI and surgeon will agree my body can handle it. There is no research or literature outlining people with my condition having a kock pouch. It will be a crapshoot, so that’s why there is the debate. Depending on the results of... [ more ]
kaydbirdIts import to ask lots of questions. I did a lot of research on the k-pouch before I got one, including coming to this site and asking questions, it is a big decision. I have never had to have a pouch revision. That is to say, I had a j-pouch previously that failed due to a rectovaginal fistula. Now I have a k-pouch, it has always worked fine. I have been to the ER often for bowel obstructions which is always a hazard of having several abdominal surgeries and developing adhesions (scar... [ more ]
jan15greatly respect you for understanding the pros/cons before hand. nobody can better explain how k pouch works than those of us who have one! some good--no great--things for me: eliminated excoriating pain w malfunctioning j pouch and various ancillary problems, including weekly blockages. what/who is your hospital/doctor? where located? I'm in Boston, where no doctor deals w k pouch. my pouch created at Cleveland clinic, dr. Dietz, who is fantastic. now go to NYC for routine exams and minor... [ more ]
SeattleJaneHi @Shavon thanks for the advice. i will definitely talk with my doc, I have an appointment tomorrow. Now that I am 3 days past my short but disastrous 7 day trial with 12.5 mg of Zoloft, I no longer have the terrible stomach aches, and I am not in any pain anywhere else, so I can't justify a pain diagnosis as a reason for ketamine. Depression? Hell yes, but my insurance company may not agree. I will give it my best go. It will probably mean trying Lexapro first....time will tell. I will you... [ more ]
ShavonI advise you to check with your doctor and maybe even a pain specialist about getting ketamine covered by your insurance. My doctor had to submit it in a specific way to get it covered - but it worked. He was only able to get the infusions covered because the nasal spray was still very new. I did not have any side effects at all. I was not on any other medication. I may look into a nutritionist however I know what to eat. It’s just that I no longer have an appetite. My therapist thinks it... [ more ]
SeattleJaneHi @Shavon , thank you so much for taking the time to add your information and experience. Ketamine is new to me so I did a little research on the internet. It sounds promising, fingers crossed. I understand insurance might not cover it, and it's pricey so I will bring it up with my doc and take it step by step. May I ask three questions about ketamine? No worries if you do not have time to respond, but if or when you have time - here they are: 1) did you have any G/I side effects? 2) did... [ more ]
Kimmiebee84The BCIR works really great for some people. Others like me, it does not. I had an ileostomy transferred to a j-pouch. My pouch failed in 2010, and in 2011 I went to a permanent ileostomy. It worked great for awhile, but I started having a lot of leakage issues, so I gave the BCIR a go. It was a HUGE surgery. You’re literally cut vertically and horizontally. You have to stay in the hospital for 3 weeks after surgery, and that was really hard for me. Afterwards my body rejected the BCIR. I... [ more ]
sldrx(1) I am looking for info on David Dietz so anyone with info and/or experience with him, PLEASE PLEASE reply. (2) Regarding anemia: Blood clotting factor is mostly produced in the colon and since we don't have colons, our blood does not clot as fast as the average person's. Our catheter holes have slightly sharp edges, even if they feel reasonably smooth, so we have chronic 'micro-bleeds' that can eventually make us anemic. Even if you don't get low enough to qualify for that diagnosis, you... [ more ]
JLHSo sorry to hear what you have gone through. Terribly exhausting. I agree that you are more than ready for IV iron, but unfortunately I can’t write out the script. There is now an IV iron in one infusion instead of five spread out over 10 days or so. And it only takes a half an hour of being in clinic. What is your ferritin level ? B12? I think that iron pills are not effective because they don’t dissolve until past the beginning part of the intestine where Iron is absorbed. Or iron is... [ more ]
BevSDCMy iron is also low enough to need IV iron. My colon was removed and j-pouch created in December 2016. In March 2017 I had my takedown surgery which was followed by a massive c-diff infection. Had major surgery in August 2017 to fix a bowel obstruction caused by an internal hernia where the intestines fell back and started to attach to my ovaries. In November 2017 I had my second takedown surgery and I'm not sure the inflammation has gone away. In December my total iron was 25. About a month... [ more ]
skn69Hi Debbie, Well, as for the surgery, I think that for the most part, it worked...or within the limits of what he could do. My liver is still miserable (less meat, fat, cheese, oil etc helps a bit) but I need my hepatologist to take another look. My pouch is back on the wall and the valve, although not perfect, is straighter. The loop of bowel that I had problems with is fine now and the changes are amazing. Ditto for the few adhesions that I had that were causing problems...so an all-round... [ more ]
DG78Sharon, I haven't been on the site for a long time. I used to keep updated nightly with everyone's posts using my iPad in bed before falling asleep, but since we no longer have wifi in the house, I have been out of touch! I'm so sorry to hear what you've been through, but I am encouraged to hear what your WONDERFUL surgeon has done! I'm afraid there aren't many of them who listen to us and believe what we tell them is happening to our bodies. And I too am finding that the "good ones" are... [ more ]
skn69Hi Debbie, Welcome to the Zebra club! Yes, you have stripes too. There are genetic tests possible but they do not test for all types of EDS. Type 6, the stretchy ligaments, fragile skin and tissue kind , does not show up on tests. So my family doctor diagnosed me through physical tests. Not all hyper mobile EDS patients have all of their muscles and ligaments hyper mobile...my right thumb bends 100% backwards, not my left. It's because it got dislocated once. That's all it takes for me. I... [ more ]
DG78Well said Sharon! I'm curious if you were tested for this, or if it was not necessary due to your many symptoms. I have approached my doctor about this, but I feel she knows too little about it - disregarding my lack of internal scaring, end ileo prolapsing, multiple pouch revisions required for falling off the abdominal wall and valve slippage, need for mesh, problematic loose joints, scoliosis, vascular fragility, etc. - but she simply thinks that if my thumb doesn't fold back on itself, I... [ more ]
readannThanks, Rose. I know he would be doing the surgery and my hospital. Good idea on the past surgical history. [ more ]
rosevioletPerhaps ask: where you'd have to go should there be future complications; what are chances for success given your past surgical history; what would he advise a family member with your similar medical history; where is this surgery performed and who are the best surgeons; -- Rose -- [ more ]
readannYes, I had Physio and did biofeedback twice. My pelvic floor is a nonissue because I am never reversing my stoma. I’m mostly curious about the kock pouch. my diet cannot be changed, unfortunately. [ more ]
jan15So sorry for your long journey of unanswered questions and unresolved problems. Also sorry that I have no answers. One suggestion, have you tried PT for pelvic floor? I went through it for over a year and it helped. My core was weak. Well, another suggestion. Keep a diary, so you can share with your doctor what you ate, when, how you felt and when evacuated. This will help you determine how much to eat, what to eat and when. Where are you located and do you have the ability to see doctors at... [ more ]
JanW2Hi David, Sorry it took me awhile to look at this, you wanted follow up on how long it could take to empty the K pouch. In my case minimum of 15 minutes, normally 20/25, and up to 40 . And this would be about 10 to 12 times a day. I got almost no sleep at all. I needed to use an enema bottle to thin things out to pass food. I was restricted to very low fiber foods.When my K was removed 3 blockages were taken out and many adhesions, so I’m sure this had quite a lot to do with the issue. A... [ more ]
jan15posted info in another chat room. let's get back to David's questions on this thread. ok? This excellent symposium--“The First Annual Dr. Victor Fazio Symposium in Diagnosis and Management of Ileal Pouch Disorders”--was held 17 and 18 Sept 2021. Links to the two half day discussions are listed below, as is the agenda. The symposium is intended for medical practitioners and for patients, so please do not think it will be only medical terms beyond your grasp. I did not zoom into all of the... [ more ]
skn69Hi David, I am one of the oldies on here, 42yrs with my K pouch and quite a few revisions to be able to keep it (essentially due to my underlying disease, Ehler's Danlos syndrome which keeps my body from healing correctly so things come 'unglued' or fall apart easily). I LOVE my K pouch. It is not just a lifesaver but a life changer. I couldn't, at 18 deal with the idea of an outside bag. I couldn't deal with another ostomy...I had had a colostomy at age 2...not a great success and I got... [ more ]
BillCoHi Marsha! Nice to hear from you! I have heard that Dr. Shen is part of Dr. Kiran's group now, although I have not met him yet. Dr. Kiran did my corrective surgery a little more than a month ago. Until last week I apparently had an infection and was in terrible pain, making me doubt whether I made the right decision. (I was thinking about having a reversal.) I just finished a round of antibiotics and things are MUCH better! Pain is all but gone and my stoma and pouch is behaving better than... [ more ]
marzHi Bill I just read your post and was wondering how you are doing? I was just in NY for my annual k-pouch scope with Dr. Shen. I know Dr. Kiran is the one to see if there are problems, so I hope he was able to help you. Dr. Shen actually left Cleveland Clinic for NY because Dr. Kiran was in NY. They are a great team. Marsha [ more ]
BillCoHi Shimm! Sorry I didn't get back to you sooner. My surgeon wanted to arrange a visit with a hernia surgeon, but I wanted someone more specialized. So, I have surgery scheduled with Dr. Kiran in NYC for late August. We'll see if that is the answer to the problem! Thanks for your thoughts! Bill [ more ]
dgsYes, there is an excellent K-pouch surgeon in San Diego! I've had several revisions in the last 43 years and all done with Dr. Jonathan Worsey at Scripps Clinic , La Jollla. My first revision was with Dr. Launer, now deceased, and his partner Dr. Worsey, who also worked at the Cleveland Clinic with K-pouches, etc. Wishing you well! [ more ]
DSL AlabamaHi Joe, I do not, however, I found great doctor recommendations from local chapters of the ulcerative colitis and Crohn’s foundation support groups. They should be on Facebook and / or you can contact the foundation. Good luck! [ more ]
jan15just did a quick search and devrom site once again had the least expensive site. i stopped using them during covid but will be glad to get back on the train. ms e--too bad you can't get your husband to do an ad for them!! loved your comment. jan [ more ]
Ms EI just joined this group and found your question. I have searched repeatedly for a better price but the best price is still at www.devrom.com . I always buy 12 at a time for the discount. It really works for me! My husband can tell within one day if I have run out! [ more ]
maisymooIf it is the case that it needs a repair (I just read that surgical mesh is sometimes used to repair plus the success is pretty low) I think it would be futile i had surgical mesh removed some years ago after it caught in my tube holes when removing the catheter it had made its way through into my pouch but still attached partly to my flesh so I was pulling my insides out it was a nightmare I'm lucky to have gotten this far I guess. It might be time for removal especially as there is no kp... [ more ]
Kim SYes, they can be diagnosed by a CT scan. The lack of experienced K pouch surgeons is a problem in the USA too. [ more ]
maisymooThank you Kim I didn't consider a hernia I will mention this to my gp can it be seen on a scan? My new surgeon knows nothing about the kp I'm hoping she can repair it if needs be infact there is no kp surgeon in Scotland there was one in Edinburgh but my previous surgeon says she got no replies from him about another patient. It's good to have input instead of me guessing. Maisy [ more ]
Former MemberAwesome, hope it works for you [ more ]
emmeMany thanks for all the info. May soon try either the Marlen #15030 or #15285. I'm currently on the search for a good catheter replacement for discontinued 'curved' catheter product Medena M8731 (Astra Tech) of which i've been using for 33 years. [ more ]
KQBThanks for the great info. and the item #. I will look into that. [ more ]
Jan DollarThere is nothing specific about having a continent pouch and enjoying a hot tub that you should be cautious about for yourself. Talk to all the doctors you want, but the risk is mostly to your skin (skin infections), not your internal organs. You can get diarrhea if you drink the contaminated water. Just like anyone else, you want to get into a sanitary hot tub. I have been in oodles of hot tubs since my surgery in 1995. Never had a problem (yet). Granted, I have a regular j-pouch, not a... [ more ]
tfHaven't been in a hot tub in 25 yrs, way before Jpouch. Never had problem before. The hot tubs were mine. Wouldn't think about today's world. [ more ]
Former MemberI would send a private message to both skn69 or marz , I believe they have the system as you and they may be able to tell you more info about your concerns. I would copy and paste the same message to both. [ more ]
KushamiSorry, it seems like the clinical trials planned are on hold due to you know what. Sigh. (I thought the people might have already gotten the implants.) [ more ]
KushamiIf anyone is interested, there seems to have been some progress, with small trials running in several countries: https://ostomycure.com (Yes, it's a terrible company name.) The drawcard for me would not be the cap, which I probably wouldn't bother with, but the fact that you don't have to use adhesives on your skin. That would change the ileostomy option from unbearable to pretty okay for me! It can be fitted (implanted?) to new or existing ileostomies. [ more ]
skn69Jan, I had an Obs/gyn who was full of old-school wisdom. When learning about my pouch and the fact that my stoma bleeds regularly, even a few drops, every time that I intubate, he exclaimed that blood belonged inside and not outside the body...and that constant loss of blood no matter how small the quantity, could lead to anemia...he put me on higher doses of iron after that. We have our special anatomy and special needs (no not that way!) and all have diplomas in medicine when it concerns... [ more ]
jan15Sharon, thanks for your reply, which as always contains great wisdom. I do eat a balanced diet and am clued into what foods to combine or avoid. That said more advice is welcome. Additionally, I have been told that some K pouchers don’t absorb nutrients as well as others. According to a scope there is one ulcer. Will know next week if it’s a scrape, perhaps from the catheter, or a small amount of pouchitis. Personally I don’t think that small of an ulcer could have caused the Iron... [ more ]
skn69At the time that I had my k pouch done (in 1979) I was told that if you can gain weight then you are absorbing enough. In the long-term, I realized that that was not necessarily true. Yes, I absorb most things (especially those darned calories!) but some things need help. I take my B vitamins in sublingual drops or dissolvable tablets (getting a shipment shortly from N.A.) and although I tried the Forvia Iron, I had a horrific allergic reaction to it and had to stop. Now I take iron pills... [ more ]
Former MemberWow that is crazy! I am sorry to hear that! I see leaks are pretty common in all types of pouches. [ more ]
Tony SpackeMy valve after each repair developed scar tissue causing the mouth of the valve to fish mouth allowing fluid to escape. Very unfortunate. Dr Schiller concluded that replacing the valve with new tissue will solve this from happening again. [ more ]
dgsYes, their original one, at 15 inches was stiffer than my Weber & Judd and I had never used short lengths before and for me had many negatives. This new Marlen is very soft and pliable, the hard bullet tip is only half the length of the original tip but this hasn't been an issue. In fact, when you pack them and have to fold them, they won't ever have a hard crease and will not cause those kind of issues. If this doesn't work, then try the one that's on the 2nd page of this thread from... [ more ]
KC1126Do you use the 15285? I’m going to order it and give it a try. Hoping it works better than the one I have from them🙏🏻 [ more ]
Former MemberMedication: Mesalamine Suppositories or Mesalamine enemas Food: Oatmeal and Greek yogurt Probiotic Supplements: Align or Visibiome [ more ]
tfVery sorry to hear this. Every person on this site in one way or another has helped with their knowledge and experience. My they RIP [ more ]
skn69They were both members of the BCIR family...and most (although not all) have at one time or another come here for help, advice, and support...I am not sure either but I suspect that there may be some of us who knew them. Sharon [ more ]
Jan DollarSad news indeed Sharon. I have not been on the j-pouch site much lately and do not recall them. Jan [ more ]
Former MemberYour welcome, hope things get better. I would see a gastro at this point. [ more ]
amosThanks for all replies. I went on lyquId diet for a week. Seems like bleeding has stopped and pain is gone and all the loud gurgling has stopped. Started eating again and gurgling is back and I still seem to have to with my fists push in just below ribs and rotate downward to get pouch to empty and to get rid of gas. [ more ]
skn69Hi Amos, Hi guys, When I think about the upper abdomen I think of either gallbladder or liver. I also think of gastritis. Does the pain change according to what you eat? Do fats and fatty foods make it worse or not? (sign of an unhappy gallbladder) Is it worse or better if you do not eat? (fasting gas, burning and nausea could be a sign of gastritis) Are you burping more than before? (dyspepsia?) Do you have heartburn? (Gastric reflux?) Does the pain radiate to your back (middle back to... [ more ]
skn69I've had the same routine, more or less, since 1991 when I read the Fit for Life book and found a solution (for me) to a lot of my pouch problems like digestion, pouchitis and thick output. Mornings are only fluids, water, juice, black coffee. That allows me to clear out my pouch 100% At around 10am I eat a banana or other fruit. Sometimes more. Depends on the day and where I am working (outside or from home) At noon it is usually a protein with a vegetable. It can be cheese with cherry... [ more ]
skn69Irritation, inflammation, a slipped or adhered pouch...If intubation has not changed then your pouch probably has not moved...if your output is normal then it may not be pouchitis (it usually changes the quality of the output to either bubbly, liquidy or stinky), it could be a pouch ulcer (you did mention Crohns) or some other kind of irritation...but all of those require either a pouchogram or other sort of exam... Can you go onto a liquid diet for a few days and see if that helps or not? [ more ]
Former MemberScar tissue can weigh that much???!!?!!!! I am happy you are doing okay though [ more ]
TannerScar tissue is a big problem the older you get. I had it taken out after 20 years. I had so many blockades. Now 17 years after that I have 15 lbs of scar tissue and they will not take them out unless I am super blocked! Water water water! [ more ]
Kim SOhio: Dr. David Dietz at University Hospital, very close to the Cleveland Clinic. and Dr. Scott Steele at the Cleveland Clinic. Also Dr. Alessandra Gasior in Columbus. She is helping some patients, depending on what they need. there is a list of dr’s and surgeons on the Quality of Life webpage. www.qla-ostomy.org [ more ]
BillCoThis is a reply to JanW2 and ytcrockpot: This past Tuesday my surgeon confirmed that there is no surgeon in FL or OH that she is aware of. Anyone who needs a K-Pouch specialist can contact her: Jean Ashburn, MD at Wake Forest Baptist Hospital in Winston-Salem, NC. She has an excellent reputation, which I can confirm. [ more ]
Former MemberI actually learned about that today! I go 13-20x a day so I would be in trouble XD Thank-you for posting that! That is definitely important for colectomy people to know [ more ]
LtlBirdMy pharmacy knows not to even fill caplets, hard coated tablets or time release medications. My doctors know not to prescribe them too. There just is not enough time for them to break down before getting stuck in the catheter. My pain medication is an oral film that dissolves inside my mouth. It works much better than pills. And I use a nasal spray called Nascabol that is vitamin B complex. Before I started using that I was always so tired. [ more ]
BillCoAfter K-Pouch surgery last January the hospital gave me Simethicone, which seemed to help with excessive gas. It might be worth a try! [ more ]
jan15Do a site search for Devrom. Lots of information about others experiences. And best prices. Don’t get discouraged if it doesn’t work right away as it took me about two weeks for full effect. There’s some foods that it just won’t cut, but that might differ for a person. Good luck and I understand the smell problem embarrassment. It’s universal. [ more ]
Kim SI carry a purse size spray bottle of a product called “Mask” that I ordered from Amazon. It’s not over powering or extremely fragrant, but unless I’ve eaten something over the top, it does a very good job without being too much. It comes in a large bottle and I had an old empty Poo Pouri purse size, so I just keep filling it up. I’m not a fan of most of the poo pouri fragrances. [ more ]
skn69I cross my fingers for you...hopefully this is an answer... [ more ]
lesrich1I get notifications of posts on this subject. Having been to the dr yesterday, I wanted to share an update on the diagnosis. I thought I was having an interstitial cystitis attack last week and got myself to the urologist. Had been to him March of last year to discuss the issue of this thread. Bottom line here: the bladder and bowels (even the pouch) share the same nerve. I am absolutely feeling discomfort in the bladder region and need to empty the bladder. The pouch is not sending the... [ more ]
Former MemberOh wow!! Sorry to hear about that! I am glad you are better now though. You still had your rectum when you had the J-pouch??? [ more ]
JanW2The first one prolapsed after several years and the second actually was good , but when the rectum and anus were removed due to stenosis, Other complications set in. The K pouch was formed 10 months later, the Kpouch Drs tell me the pouch is in good shape, It’s my system That does not digest food well, so have to be on extremely low fiber. Lots of difficulty with emptying. It’s complicated. [ more ]
Former MemberWhat made your two J-pouches fail??? [ more ]
Former MemberWow I learned a lot, thank-you for explaining! I never knew about that stuff! And yeah I have a J-pouch. And hahaa that is super funny, "you have a J pouch, then you probably don’t need to worry about this. I’m sure you’ve got enough other things to worry about!" I love that hahaa Do you have a J-pouch too??? [ more ]
jan15Catheter is for stoma of the K/BRIC type pouch. The catheter is inserted into the stoma in order to eliminate. these types of pouches are internal capture, in contrast to an exterior bag/appliance that goes over a stoma. One would consider both types of stomas as an ostomy. The first post in this thread refers to using a catheter with a J pouch. It would be best to get clarification from Ellie85. It sounds like they’re using the catheter to eliminate from the anus. If you have a J pouch,... [ more ]
Former MemberAre you guys talking about a catheter in a ostomy??? [ more ]
emmeHi Rosie, sorry to read about your current pain concern. I can relate with you at this time too. I think an assessment with a colorectal surgeon would be a very good idea. Just wondering if your soreness and itchiness could be a result of peri-anal fissures or tags, or possible abscesses. Have had KP for over 30 years, and in recent years, have experienced chronic, diffuse pain and itchiness in this area. For myself I've suspected chronic intermittent pain due to p/a fissures & formation... [ more ]
LtlBirdRecently a doctor found a mass where my rectum use to be. I kept telling doctors it felt like I was sitting on a baseball but no one would even look. It was like since I don’t have a rectum they thought there couldn’t be a problem there. Finally Dr. Shriller found this terrific colorectal surgeon in my state for me to see. He really listened and looked to see why my bottom felt like that. I was sitting on a big ball of scar tissue. He removed it as well as other scar tissue and it helped a... [ more ]
Rosie128Thank you. I will be trying the bath, that sounds good. [ more ]
skn69Hi, Have you tried changing positions? If you normally sit, try standing up (less pressure on the bottom of your pouch...it will hang 'free'...and may make things easier, if not try laying down either in the tub or on your bed with a blue pad under you and a jug or cup to catch output. Once you get the catheter in, please leave it in for a few days. You can plug it or hook it up to a leg bag or something else. Do not irritate it more than it is already. IF you feel like you are hitting a... [ more ]
dpolSo sorry for your troubles! The last time I had trouble intubating, I just left the catheter in for a few days and it helped. If you continue to have trouble I would see your doctor. Good Luck! [ more ]
ET_RNHi, Dr. Bo Shen is now at NYP Columbia. Best wishes [ more ]
skn69Not sure if this will help but there are all sorts of natural teas that are supposed to help to cleanse the colon...I would consider them too harsh for K pouchers except in the case of emergencies or someone who has chronic thick output. You might want to experiment with strengths...sort of put the teabag in for only a minute and see how it works for you, then 2 the next time until you find the perfect strength for you. I also use licorice/mint tea that is quite good at getting stuff to run... [ more ]
Kim SOh boy. Not the results you were looking for. Maybe experiment with 1/4 of a pill. [ more ]
JanW2Hi all! My 2 cents here! On lubricants, I have for the last several months used McKesson tubes from Vitality and find better thickness in this products than others , I order in bulk when they have specials. If only we could get a better catheter now?? I appreciate anyone’s input at any time, even if it won’t help me at that time. Be kind and thankful for the ones taking their time to reach out to offer us help Janice [ more ]
Dancing GirlThank you for your apology. I really appreciate it. Yes, you are right.. we have all been through hell and are now living our best possible lives. If I wish to make any further points with you, I'll do it privately. Again, than you for your apology. Certain ways I need to deal with the J-pouch is not at all like you deal with in the K-pouch or someone else deals with during an ileiostomy and even a loop reversal iliostomy (This I know for sure cause I had both BEFORE the J-pouch.. one for a... [ more ]
skn69Dancing girl, I do sincerely apologize if you misread or misunderstood some information that I may have transmitted. I try hard to help people in need, in distress or need of a laugh. I do not always succeed, but I do my best. I have a k pouch, not something that I hide or even pretend to hide, I have had it for 40+yrs and thus have a little bit of experience with it and having had a large number of revisions, I had to deal with it in a world that did not have internet and social media to... [ more ]
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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