J-Pouch ForumsK-Pouch Korner
Topics
Sorted by last update
J-Pouch ForumsK-Pouch Korner
CT, are you on biologics? I am with you, screw what they call it. It's IBD and chronic inflammation can't be good for us. Chronic inflammation with superficial symptom control is what landed me with a j pouch in the first place. Artmom-I sometimes wonder why there are not individual trials in refractory cases of immune suppressives. I have another physician friend that ended up on 6mp for chronic 'pouchitis' that symptomatically helped but still showed horrible inflammation on endoscopy. [ more ]
Art Mom: A few years ago I posted pics of my pouchitis which they still aren't sure if it's pouchitis or Crohn's Colitis after many years and many tests. Go to the last 3 posts I put up on page 1 of this thread and observe the attachments: https://www.j-pouch.org/topic/m...choscopy-pics?page=1 Those pics taken in 2012. My pics taken this year look similar. I got better, then worse again. [ more ]
I know at my hospital the reason they do Cat scans are because of the wait time for the MRI machines. You can wait up to 2 days and if your in the ER that can be a problem. The hospital did get another MRI machine so at this visit the wait was only a day and I got admitted first. I told them I already had 13 C-scans and no more. [ more ]
See all 10 replies...
J-Pouch ForumsK-Pouch Korner
Just wanted to thank those who sent pm's, in particular Sharon ( skn69 ) , whose advice and encouragement have been a tremendous help to me. And also to Jan, who has helped so many others , and now who has helped me with info about my situation and also some tech/j-pouch website type issues....Thank you both again...I am hanging in and trying to keep up my strength and hoping for a good resolution regarding my recent surgery. The emails/pms with the info and advice have been so beneficial to... [ more ]
Thanks Jan...found it! Boy, were there a lot of unanswered PMs! So sorry guys, I had no idea! Sharon [ more ]
Thanks to all who have replied ...and also sent pm's.....I am in process of having had to travel a great distance from my home to try and seek med consults/exams etc regarding my surgical/ medical situation. I will post and reply to the pm 's when I have an update. Still dealing with a lot of pretty severe abdominal pain and the many complications of my recent surgery...Thanks again for the messages and the advice...I am truly very appreciative.... [ more ]
See all 9 replies...
J-Pouch ForumsK-Pouch Korner
Originally Posted by Rosie128: Prayers and well wishes for a speedy recovery. Just listen to your body, everyone heals on their own time, and I agree with Sharon, as we get older the bounce back time is a little greater. Wishing you and your new pouch the best! Keep us posted! Dear Rosie, Thank You for the well wishes and though it is slow I am making progress. One of my largest challenges is that I am very isolated and have little family left and friends (local) are a commodity that is... [ more ]
Prayers and well wishes for a speedy recovery. Just listen to your body, everyone heals on their own time, and I agree with Sharon, as we get older the bounce back time is a little greater. Wishing you and your new pouch the best! Keep us posted! [ more ]
Originally Posted by skn69: Hi Will, Welcome home, From what I remember I was exhausted and needed a nap after every effort...a shower, making my bed, walking around the block. 20yrs ago you were 20 yrs younger so it is normal that you should be so tired now...give you body the support that it needs...light protiens like chicken or fish, lots of hydration like diluted juices, low acid foods like apple sauce and bananas. All will give you energy and low residue for your pouch to heal easily. [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
"""Hi Will, I'm so happy for you! So did Dr. Schiller make you a new K Pouch or a BCIR? Debbie""" Yes Debbie, Dr.Schiller did a full replacement of my pouch that was made about 20 years ago and I am starting fresh. It is the BCIR Barnett as I understand it. Dr. Schiller actually worked with Dr. Barnett so I am very happy to have this part of me made well and of course am tired and still feeling all the healing pains. There was another patient there as well that also was receiving a new pouch... [ more ]
Your very welcome Will. Keep in touch about your progress. Ray [ more ]
Hi, I wanted to just make a quick post to all and especially "Ray" as he referred me to Dr.Schiller. I have just returned home after a full Pouch replacement. ( the valve revision was needed but once they had me opened up it was obvious I needed a full replacement) This is just one of the many reasons I wanted a experienced surgeon, and Dr. Schiller is indeed #1 for my situation. I was in the hospital for just less than 3 weeks. Because of the massive antibiotics and such I ended up needing... [ more ]
See all 29 replies...
J-Pouch ForumsK-Pouch Korner
Can you get a second opinion to see if it is actually Crohn's? I know sometimes it is hard to get an exact diagnosis. Prior to my k-pouch they waffled back and forth with the option that it might be Crohn's and then they decided it was colitis. I don't think there is a definitive test to prove Crohn's (please correct me if I am wrong, anyone!) Did they in fact try to treat the pouchitis with antibiotics and anti-inflammatory medicines? Saying a prayer for you and keeping my fingers crossed... [ more ]
See 1 reply...
J-Pouch ForumsK-Pouch Korner
Sharon-Thanks so much for your reply, I certainly agree with your Uncle, and also agree things can be a lot worse. Blessings to you. Michael [ more ]
I tend to think that I have mastered the k pouch eating formula until my pouch proves me wrong (again and again!)...what works on Monday can react totally differently the next day. As my uncle says (a j poucher), It's not what your eating but what is eating you that matters. Sharon [ more ]
Sharon, it seems that everyone’s system reacts differently in how it processes the food we eat. I love oatmeal and have a large bowl of it each morning along with cantaloupe or grapefruit and several cups of coffee and it passes through my BCIR very easily. Some other foods like mashed potatoes and pasta thicken things up a lot for me, so I avoid them or eat small amounts along with extra fluids. I like to believe that I control my BCIR and not let it control me. Bill [ more ]
See all 11 replies...
J-Pouch ForumsK-Pouch Korner
I would love to Bill. Thanks for thinking of me. Unfortunately is too last minute though as I have 3 small kids and Orlando is almost 4 hours away from me. But I will check out the website in case he does another one in the future. I would probably be able to go if I planned in advance. Thanks though! [ more ]
Rosie, here is another thought since you are in Florida. Dr. Rhenke will be hosting a free BCIR seminar this coming Sunday, May 17 in the Orlando. I attended the one in Chicago last summer as a BCIR “alumni” and found it to be very informative. This would be a great opportunity to meet Dr. Rehnke and personally ask him any questions you might have. Seminar information is available on www.bcir.org . [ more ]
Thank you Bill and Vanessa! I will look into making contact (hopefully this week, if my schedule allows! LOL) I will also look into the group. Sounds like something that I might enjoy being a part of! [ more ]
See all 11 replies...
J-Pouch ForumsK-Pouch Korner
Praying for you Vanessavy! Really hope things get better ASAP. [ more ]
Any results back yet? Sharon [ more ]
Adhesions don't show up actually on scans. Really rare if they do. Mine are most likely 6 desmoid tumors. Had laproscopic biopsies done yesterday. Never had lapro surgery since my BCIR. Nightmare. Can't get the pain under control and it is horrible. Almost as bad as my procto. [ more ]
See all 8 replies...
J-Pouch ForumsK-Pouch Korner
Dear Sharon, No, not granulated. as for my surgery I am very confident in the outcome. I am going to LA and seeing a very good Doctor/ Surgeon. I actually did have a contrast done and I can not say if the people up here that saw it knew what to look for or if when having it I was positioned in the way I would need to be to see certain angles. I do know the history (obviously) and have given Dr. Schiller a lot of what I had and when I see him I think all will be good. I will try that test as... [ more ]
WillLive, Do you have any granulation on the outside or just inside of your stoma? It kind of looks like tiny white bumps or little stoma-coloured grains of sand or rice. They can bleed an awful lot...and the blood is fresh so very red. Could your tube be slicing into or ripping your valve further down? Hooking on some part of it? All of that could cause micro tears in the valve or inside the pouch that could also start bleeding. The tissue that our pouches are made of is very fragile and... [ more ]
Originally Posted by skn69: WillLive, Hi, you do well not painicking...it is pointless with our pouches because 99% of all ERs do not know what to do with us and will only make us regret going. Chocolate can contain red dies (they use it to make the chocolate look darker and tastier) and that can die your stool. Also beet (or veggie chips), twizzlers, gummies, wine gums, red jello etc...any red or reddish candies, ice creams, fruit yoghurts, berries etc. Some meats can too (like sausages) so... [ more ]
See all 7 replies...
J-Pouch ForumsK-Pouch Korner
That's it...makes a thick, sticky paste that sticks to the inside of the tube (and the toilet bowl) and is nearly impossible to clear out. 2 choices, stop taking the med or stop eating cheese! Sharon [ more ]
Thanks Sharon, You may be right. I do eat a lot of cheese. And I do take a med for Cholesterol. I suppose you could say that is a fat capturing drug. [ more ]
Bodoni, Certain fats will do that to me. Cheeses, lamb chops, pizzas, cheese cake,...anything that has very high fat or if you take Alli the fat capturing drug will do it too. It seperates the fat molecules and encapsulates them so that they don't fix in with the stool. Is it orangish or yellowish in colour (tmi?)...that is usually the colour of the fat. Just try a light or fat free diet for a few days to see if it has an effect on it. There is also something to do with the pancreas or liver... [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Deleted, I am so terribly sorry for what you are going through. I think that it is our common nightmare to all of us. In 1996 I was a pedestrian, hit on a crosswalk, first by a bike that threw me into oncoming traffic that hit me hard and threw me back onto the bike. The EMT took me strait to neurology ER because I lost consciousness. Turns out that my head was ok but my lower body really suffered. (hips, knees, ankle and unknown to me, abdomen). My pouch was perfectly functional but the... [ more ]
First let me say I am so sorry and distraught to hear what happened to your pouch! I am so sensitive about the safety of my pouch and valve that I never want anyone messing with it. I can’t imagine how upset I would be if I were in your shoes. My first choice would be to stay with your original surgeon since he’s the one who created your successful pouch and valve. However, if others can suggest a more affordable surgeon who also has a great track record, than perhaps you would be a good... [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
Debbie, Yes, the hip joint slipping out was one of the first signs that I noticed...(other than the not healing part!)...they say that weight bearing exercises help a lot and I think that those years of weight lifting went a long way to keeping things tightly in place. Collagene & silicium are the only things that I know of but there must be others. Gelatin? I guess that lots of proteins, iron and muscle building elements couldn't hurt us. There is also something to be said for those... [ more ]
I'm glad there's an end in sight for you but please sleep for 3 days straight before you go wait in line over there. Ugh! I'm doing okay but now my right hip ball and socket joint keep slipping out. So painful! Is this an Ehlers-Danlos issue I wonder? I'm going to ask my physical therapist for exercises to help strengthen the muscles, but I wonder if I could take some supplements to strengthen the joint. Debbie [ more ]
I think that that is the next step Debbie, I used to do them on a regular basis but stopped due to the tatooing effect (yes, here they give them in your butt)...they don't give them in infusions. I will try to see my GP in a couple of weeks when I get a day off (been running to the hospital on Saturdays to visit my French Mom-in-law and haven't had a minute to myself)... I slow down in just over a month and can line-up in front of his office then (no appts with him, just a vast waiting... [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
Amos, Some people use protein powders and artificial food supplements to put on the weight but although I am not against them I prefer the natural route. If you cannot put the weight on naturally and all your bloodwork comes back fine then I might try some good quality protein powders but research it well first. I know nothing about what they put into them anymore so do your homework and pick the most natural ones. I had success with whey powders about 30yrs ago but don't know if they still... [ more ]
Thanks Sharon I'll some of what you said and see what happens. [ more ]
Funny how some of us can't take it off and others can't put it on. I have had surgeries with post op complications that lasted weeks and I only lost 2lbs. Frustrating. Maybe you could up your intake of nuts, dried fruits, root veggies (sweet potatoes, various potatoes etc) and squashes along with more red meats. I don't like suggesting oily foods, white flour or anything unhealthy but I can put on 10lbs on nut butters, bananas and honey. Dark breads and butters and pastas in cream sauces... [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
J-Pouch ForumsK-Pouch Korner
Hi, Sorry to take so long to answer but work and time changes get the best of me. Yes, exercise is good, especially the simple easy stuff like walking, swinging arms, shoulder rolls etc...But squatting down puts a lot of stress on the lower abdominal muscles, leaning forward and picking something up (anything heavier than a can of tomato soups is out of the question for now) puts strain on the sciatic nerve, the lower back and the abs. Not good. My surgeon is a great believer in yoga and... [ more ]
Thanks for the input. I left out that my husband drove me to the grocery store, pushed the buggy and got just about everything I pointed to. Then he loaded and unloaded them so no lifting whatsoever. I don't carry the laundry basket - just take out a few items at a time. I'm a little over a month, post surgery - question - are you saying I shouldn't stoop or lower myself to the floor for items while gently pulling myself up? I thought I shouldn't be doing that either, but Dr. Rehnke said... [ more ]
Grocery shopping? Are you out of your tree? (Fine I did the same thing a week post op but then again I really ended up hurting myself !) Gently strolling down the ailes not reaching up for produce or down for bags of stuff...No squatting down to pick up a bag of potatoes. No pushing that darn buggy! Same with laundry...you do not carrry the basket down to the laundry room! As the resident expert on doing really stupid stuff post op and messing up my pouch thanks to my stupidity...please do... [ more ]
See all 52 replies...
J-Pouch ForumsK-Pouch Korner
Thanks Lois, When I was having serious pouch/valve problems (peristomal hernia with the pouch twisted up into it) and my valve was 'pull out and twisted' I wrote to all of the suppliers (thanks to everyone on this site notably Holly who no longer comes here) and got samples of other sorts of valves to try. I got a very short, slightly wider tube that I could keep in (one was a short naso-airway tube the other was similar but had an inflatable baloon at the inside end to block it inside my... [ more ]
Sharon....it's from the anesthesia, I have the same thing happen to me. The more times I put to sleep the longer it takes for me to recover. So, don't worry it will pass. It takes time to get it completely out of your system. I'm glad you are doing better with the surgery you just had done. Hopefully, you will always be able to get the catheter in. With me, it's a stricture, a very tight small opening and the catheter just won't go in. They have trouble getting in a 20 Fr., if my 30 Fr... [ more ]
You could try a sort of self-made biofeedback...sort of giving yourself a sensation just before emptying (an elastic on the wrist being snapped or some such thing) and then you go empty...it teaches your brain to rewire the feeling through other sensations... I have 2 problems that remain post op; when full I still cannot get the tube in until I empty my bladder and my direction is still not constant. So it is pee, try to intubate, if it doesn't work, change tubes (straiter, curved,... [ more ]
See all 5 replies...
J-Pouch ForumsK-Pouch Korner
First day (1/2 day) back to work yesterday...survived the travel and morning but came home exhausted...and in Pain. My right knee is seems to hate me and the pain in the lower back is back but my pouch acted fine. Light dinner last night, mini snacks today for my 1st 12hr day in 3 weeks, and pain, pain pain in the lower back...if I didn't know better I would say that it is another kidney stone...but I highly doubt it. Everything hurts again and I think that it is just the pain of getting... [ more ]
You could cap off the catheter and tie it in place with gauze. Put gauze around your hips and tape in place in a couple of places and tie around the catheter to keep it in place. That is how I have mine. Then it is in so you don't have to worry about getting it in and it will help keep the valve entry way straight. Curl the left out catheter so it is under the gauze with the cap in place. [ more ]
Back to work full-time tomorrow...not likely that I could function going through subways, tramways and horrible uphill walkways at rush-hour with my pouch hooked up to strait drain...let alone a (gasp!) leg-bag at school! I did it for 5 months in 2009 and lived in mortal fear of explosions, leaks and having the tube pushed up into me during French rush hours! I would rather not eat. That is my usual go-to solution...I intubate every other hour, push fluids and avoid solids. I will wear a... [ more ]
See all 11 replies...
J-Pouch ForumsK-Pouch Korner
I agree with Sharon. Over the years, you may have become sensitive to something, like dairy, wheat, yeast(beer, wine, etc.), sugar-free sweeteners, sugar, sodas. Make sure you aren't swallowing air when you eat, don't drink through a straw, smoking causes gas from swallowing air. Things like that, I know my system has changed over the years to food. Also, be careful for gas producing foods like cauliflower, broccoli, eggs, ice cream, green peppers, soda, baked beans and lentils, etc.. Food... [ more ]
Tom, Gas can be both food related and bacteria related. I would cut down the sugar and any processed food that feeds the nasty bacteria to see if that helps and then up the probiotics (if you are already taking them...if not, start taking them). They seem to help me a lot no matter what I eat. I do not take expensive or fancy ones...I stick to the Costco or Walmart generic brands. Somehow they have helped me to get through the day without too much urgency or need to empty too often. Its... [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
The Mayo Clinic as far as I know at this time, fixes Kock Pouches they originally did. I had mine done there in May of 1978. I'm trying to talk them into doing them again. All I can suggest is call Dr. Dozois and ask if they do the Kock Pouch. They need to see that this is a surgery that is wanted and then they may at one time do them again....don't know for sure. It is worth a try. I've done my part. I took out my 28 Fr. Bard Red Latex. (I'm wondering if I have a Latex allergy) So I put my... [ more ]
Jasmine, who did your kpouch? I didn't think mayo did them. [ more ]
Please be careful whatever you do...I have never had to deal with dialation... my only thought would be to put in a slightly larger tube and leave it there for a few hours/days and then put another one in the next size up...do it very graduallly and do not force anything. It may bleed but as long as it is not excessive then you should be fine. Stick to a blended diet and do not eat chunks or anything. Keep well Sharon [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Kelsie, Where are you in the U.S.? I know that Dr Cohen at the Mt Sinai hospital in Toronto Canada seems to get all of the 'difficult' cases and does the k pouch anyway (think about Eric, Dixie, me and many, many others)...he sort of is the 'never give in, never give up' kind of guy. Devoted. What exactly is Pots? I know that the ehler's-danlos is not very well known, even around here, although I am encountering more and more specialists who at least know what it is (10 yrs ago they looked... [ more ]
Interesting you have the Ehlers-Danlos problem. My daughter also has pots and that is very common with pots. It just makes me go hmmmm. Every Stoma she has had has retracted (even the revised ones) her pouch prolapsed and they think its maybe due to not forming scar tissue or adhesions. Her body is weird that's for sure. And she has always been atypical. In all her years of severe pan colitis her inflammatory markers were NEVER off. Labs would tell us nothing and even scopes looked good... [ more ]
Kelsie, I am a very, very bad example and hardly 'normal' compared to most people and their healing process. With D'Heller's-Danlos syndrom my body doesn't form connective tissue which is at the origin of most of my medical problems. Every surgery, even the simplest ones lead to more to fix the original ones. Even the removal of a cyst or beauty mark ends up being a big thing...6 weeks with sutures + staples + steri strips. And even then there is no promise that I will heal. My original k... [ more ]
See all 5 replies...
J-Pouch ForumsK-Pouch Korner
WillLive, I have litterally had a dozen k pouch revisions and valve revisions although they have never rebuilt the k pouch itself they have excised the original valve and totally rebuilt it by flipping the pouch over and using the affernt limb (the incoming intestine) to build a new, living colar onto my valve...a double modification of the k pouch original valve. It is very different than the original and I can litterally feel the difference. I may not like it as much but if it lives... [ more ]
Hello, feeling a bit more optimistic today. And it has been a long time. I am curious if anyone has had a K pouch revision that resulted in a design more comparable to that of the BCIR? Sincerely, Will [ more ]
Thanks, everyone! Hey, Vanessy, what do you mean looks better? I've always thought my small intestine was one of my best features. [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
J-Pouch ForumsK-Pouch Korner
I have had my catheter in February 2014, then took it out and that is the first time leaving my catheter in for 3 weeks didn't work for inserting my catheter. So I've still got my catheter in and I will probably just keep this way. I cut it down so I can have it long enough to empty and push it in flush and cap it off. I am using my 30 Fr. Marlen....my valve in longer than it used to be probably from the stricture. So I have to have it in for the length of my valve and then about 4-5 inches... [ more ]
I lived with a tube always inserted for 3 months. I have wondered if it would be possible to have a small tube always in that we can cap where the stoma is and just insert a tube over it when we need to empty the pouch. It would be great to know you can always empty your pouch easily whenever you want. The fear of not being able to insert the catheter or having to go to extreme measures to get it in is a pain to live with. [ more ]
I do think it's a good catheter to have when you can't get in you own catheter, 20 Fr. or 28 Fr. Bard Red Rubber, as it is pointed and stiffer. For emergencies, I will be getting one if I can't find one in different material. Over time the part of the catheter that was in the pouch past the valve, did get softer. [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Quick answer: yes and yes. I had pouchitis from the first post-j-pouch surgery check-up and continuously for 8 years. Was on cipro + flagyl for 2 weeks and off for 2 weeks for years, alternating between 2 weeks of nausea and then 2 weeks of pain/urgency -- month in and month out. After 8 years I was so miserable I had a k-pouch created at CC -- that was almost 12 years ago and I am better off now. Diet limitations are easier to take than nausea or pain and urgency, at least for me. [ more ]
See 1 reply...
J-Pouch ForumsK-Pouch Korner
Sharon & Jasmine, thank you so much for your replies. I did stop using cotton balls and used zinc oxide (Desitin) that you use on babies bottoms and my skin healed right up! Thank you so much for the suggestions! Wanetta [ more ]
I'm a fan of zinc oxide, just plain out cheap zinc oxide. It's in a lot of products to protect your skin. It's white and thick, just put it on to dry skin every time you change your dressing. My dressings are all washable and reuseable. Right now with my valve being dilated and going through Interventional Radiology to get the catheter in because of a stricture right before the valve. It is weeping from irritation, so I change the dressing a lot more. I use washable nursing pads, cut up... [ more ]
I've been using Lansinoh nursing pads. They wick the moisture away.The only time I have a problem is when stool is leaking while I am sleeping, so obviously I'm unaware until I awaken. I'm not talking a major leak. If my skin is red from stool being on it, I use Calmoseptine. Anyway, the nursing pads have been very successful. [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
Ok, Got it. But I am still not ready to say that you should switch before even giving the j pouch a fair run. Just to let you know that they do not always remove the j pouch but when possible re-use it to create the k pouch or BCIR...a pouch is a pouch...they just use a length of your small bowel to create the valve and attache the whole thing to the abdomen while closing off the bottom. That said, I know of no surgeon who would do it before you even give the j pouch a try unless there is a... [ more ]
I don't think I was clear in one thing- I am between surgeries. I am not using my j pouch yet. That's why I am considering going to BCIR instead-& not reattaching .....my surgeon said it would be easier to get rid of my j pouch now- than later down the road...& it would be less surgeries... [ more ]
MaryMom, I fully agree with Sharon about giving your pouch and related plumbing time to heal before even considering a BCIR or K pouch. Removal of a J pouch is a major operation. As far as the BCIR is concerned, I have had one for 19 months and it has worked out very well for me. I had pouchitis during the first 3 months post-op while my pouch was developing to its full size and it was easily controlled with antibiotics. I have not had a recurrence and have not felt a need to irrigate my... [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Yes, I have been so lucky with my Kock Pouch. I have been very blessed indeed. Since my valve doesn't leak, I'm really thinking I will probably try another dilation if needed. This catheter I have in now will definitely scar with a good opening because of the stiffer catheter. So it's a wait and see. I am still so for the Kock Pouch! I wish they would come up with a valve that didn't have issues. They need to take a good look at the valve I had made by Dr. Beahrs, that was quite the valve. [ more ]
Yes, very fortunate. You definitely beat the odds! Fingers crossed this does not turn into a major valve revision. But, even if it does, you still had a super great run with your current valve. You should be proud! Jan [ more ]
The catheter that was inserted in Interventional Radiology: is a 28 Fr BARD Urethral Catheter, Ref #056128. It's Red Latex Radiopaque, it has 2 holes, smaller than my 30 Fr Marlen Catheter. It is a stiffer catheter with a tapered end. I thought I would mention it on here, in case anyone is having trouble with insertion and wants to have one of these in their supplies, just in case. I have a stricture right before the valve. So I will see what the Surgeon wants to try next after the... [ more ]
See all 5 replies...
J-Pouch ForumsK-Pouch Korner
Thanks Jan.....I'm so glad you are on this site. You help so many people! Thank You! [ more ]
Sounds like a plan. If bleeding is brisk every time you intubate you are probably breaking open the same healing spot. You probably need to leave the catheter in to gravity drain for 3-6 weeks for healing to be solid enough. Hope Mayo gets back to you soon. This sounds intolerable. Jan [ more ]
Thanks Jan....Then I think I will have to have this fixed. I will be more careful and if I can't get this to go in within bleeding a lot, I will have to let Mayo know. It seems to bleed a lot very easily. I'm waiting for them to answer me, I don't think another dilation will work. The valve seems to stretched out to find the valve without irritating it. I may wait awhile and try the upward entry, like Sharon mentioned. I'll see what Mayo says. I'm still continent so I hate to have a redo on... [ more ]
See all 12 replies...
J-Pouch ForumsK-Pouch Korner
Thanks for the information .. I had my Koch pouch done in May 1994 and gave had no Problems just the occasional blockage and Foamy stools ..reading these posts has helped Me understand it better thanks ..I am an open Book feel free to contact me if you have any Questions [ more ]
It could be your diet. Try giving up dairy and reducing if not eliminating gluten and see if there is a positive effect for you. This worked for me. [ more ]
heyim new here from bahamas had my colostomy all my life im really looking to meet someone to talk to and friendship ! thinking about moving states for a better life and better supplies ! not a full member soo ill check the post everyday Smile [ more ]
See all 8 replies...
J-Pouch ForumsK-Pouch Korner
J-Pouch ForumsK-Pouch Korner
Myriam, Please contact the IBD center at Mount Sinai hospital in Toronto. They are specialists in this. I do not know your situation (financial) but they practice out-of-province rates for Canadians and could help you. This is what they do best. See about getting an appointment in Toronto for a consult and find out if they can take a look at your file first. I would suggest sending it all (after calling first) to the office of Dr Zane Cohen. His secretary's name is Rina and she is very... [ more ]
Hi Sharon! I really would like to talk with y. But I don't know how to go to privae message so I could libe y my phone or vis versa. Can y do it invite in some way so I could either call y or y call me at anytime. I guess we are about 5 or 6 hours apart. It is indeed Very hard for me. What y are now explaning was Never explained to me by any dr!! I feel like they don't care. I also will need to find alternate Dr I am affraid and need to know cost and risk now for me. My abdomen is very... [ more ]
Myriam, It sounds like your valve has 'invaginated' meaning it has sunk inside the canal. It happens and yes, I am sorry to say it happened to me in 1999 right after surgery on day 17 when they removed the sutures too soon and one side of the stoma slid inwards and caused a valve twist and then again in 2007 when the sutures let go completely...the whole thing sunk in about an inch which meant that the valve was no longer attached to the skin surface to keep the skin open...So it started to... [ more ]
See all 8 replies...
J-Pouch ForumsK-Pouch Korner
One of the meds, I found that didn't completely dissolve was Allegra, for allergies. One day I got out like around 7 pills. So be careful, I don't suggest this med unless it comes in capsule form, the one I took was pill form. This was before my valve stricture and bend, years ago with a working valve. [ more ]
I just paid the price for having my 'fruit day'...ate only fruits (bananas, peaches, a whole pineapple that I chewed and spit out, watermelon etc) then had a large salad for diner...yikes! Went to work this morning after trying to empty things out for 4hrs then had to empty every hour for the next 5. Mostly just plucking out roughage from a terribly clogged tube but I couldn't get the gas out because the tube was constantly blocked. This summer I was on chewable probiotics (the costco kind)... [ more ]
When I first got my Koch pouch 36 years ago, I went on a diet to lose weight and it included eating a lot of carrots. Big mistake! Even though they were well chewed, there were just too many little heavy pieces to flow out through the catheter. Also watch out for certain vitamin & mineral supplements in tablet form -they don't always digest and they can collect in the pouch and you won't know it unless one gets caught in a catheter hole and you carefully extract it. I stick to capsules. [ more ]
See all 12 replies...
J-Pouch ForumsK-Pouch Korner
Good point Sharon, I'll stick to urinary catheters for the hard to get in days. Right now, I'm afraid to take my catheter out to start the every 2 hour empty and wear a leg bag at night. I have made so many trips to Mayo Clinic already, it's expensive to go and stay there again and again. So I need to pay off the bills I already have. But I am prolonging another dilation if needed or valve reconstruction. With winter coming, I don't want to have to go then. So I don't know, what I'm going to... [ more ]
Let's just rename you Mc Giverette! In Toronto they use a faceplate/flange with the hooks on the sides for the belt and then pull the tube through the rubber center of the faceplate...They then suture the tube onto the flange so that there is no tape at all. It holds quite well and you can pull it a ways away from the skin to change the gauze. I wore it for a month each time...you need to wash the belt and change the flange every so often or the center gets hard and the tube slips through.)... [ more ]
I've been thinking of that actually. You never know what you'll find that could come in handy. I have used a wooden dowel in the end of my catheter as a plug, I now use the cap from an eye dropper....they work great. I've made an ostomy plate for holding an ostomy bag into, a "catheter with plug inserted" holder. I come up with all sorts of ideas. I haven't tried it yet, I just glued it together so I can put my gauze under it and glued a water bottle cap in the middle to hold my catheter... [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
Thank you so much for your helpful response. I am in touch with Dr. Schiller in California who does the BCIR procedure and will be sending him the required medical records soon and am hopeful that we might be able to do something. Can you possibly offer any comments regrading the information regarding the differences, pros and cons, between the K-Pouch and the BCIR? Thanks again. [ more ]
Hi Lisa, I am so sorry for everything that you have been going through...it sounds like a really a rough ride for you. Did they tell you why you had toxic mega colon? UC or Crohns or something else? The fact that they left you with some colon is (maybe) a positive sign that there was no crohns disease which is usually (but not always) a deal breaker for a k pouch. The k pouch is one of 2 variations on a continent pouch (k pouch and BCIR)...and the J pouch is a pouch that uses the natural... [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
Tell doctors about J-pouch.org so they can see for themselves what it's like to have or want an operation and the problems that come with them. Thank You!!!!! Advocate For Kock Pouch Procedure!!!!!!! [ more ]
I told Dr. Dozois about you Jan Dollar and Bill. So I hope they came here to see the J-pouch isn't the greatest surgery that they seem to think it is. I told them to read all the posts about problems with the J-pouch, and mentioned not sleeping all night and cuffitis. I also mentioned that I think they thought pouchitis was from the Kock Pouch.....not so, they need to do this operation everywhere. Let the patient decide, plus the cost of ostomy supplies is outrageous!!! I'm surprised... [ more ]
Good idea Jasmine, but I don't think that any surgeons believe that the j-pouch is problem free. I think they believe it is the best option for most patients. It is truly unfortunate that the Kock pouch has sort of fallen by the wayside and so few surgeons are skilled in this procedure. We need as many choices as possible, as not everyone is a good candidate for a j-pouch. Jan [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
It is so hard to believe that the Mayo Clinic doesn't do them. They fix the ones they've done, but they think they aren't being done anymore. So people don't be afraid to call the Mayo Clinic and ask for Dr. Dozois, Professor of Surgery....and tell them you want a Kock Pouch. The more they hear this the more they will be inclined to do them again. I can't say enough about my Kock Pouch.....Love It!!!!! Would do it again.... [ more ]
I couldn't say it better myself! Keep on posting it and get the word out. Sharon [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
You need a medic alert necklace or bracelet with "Has a Kock Pouch .....(along with phone number of a doctor that knows what it is and what to do). I know what you mean, in my town they don't even know what a Kock Pouch is, until I tell them. They've never heard of it before!!!! Unreal, back when I had my Kock Pouch created....I thought for sure it would become the procedure of the future. I think they thought pouchitis was from a Kock Pouch.....well it isn't. My Kock Pouch lining looked so... [ more ]
They had to do the same thing for me, twice, in intervention radiology at Mt Sinai. Both times my valve was herniated and twisted up into the hernia (big ouch). Here I had to go to ER twice(God bless the goodwill of the interns here...they actually listened to me and got the guidewire divice and I got to keep it!). My greatest fear is that I one day lose consciousness and there is no one around to explain it to them in ER...and they just stick and flang and bag onto it...and then my pouch... [ more ]
Thanks Sharon, it's amazing what we come up with. When I couldn't get my catheter in, they used a wire in Interventional x-ray, like they do for a blood vessel. I didn't see the device, I wish I would have. I know that they had a very hard time (twice) getting a catheter in me. Each time it was a different size to widen the valve. Then the dilation in a different x-ray surgical room. It's very interesting to hear everyone's experiences with the Kock Pouch. Thanks for sharing. Just remember... [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
Thank you so very much for the lead. I feel like a yo-yo being bounced between doctors and surgeons while I'm in great discomfort and pain. I will see what my gastro says about this since she comes from Stanford. It can't hurt and it's a short drive from San Francisco, so it's certainly worth the try. Anything at this point is worth the try. Thanks again and I'll keep you posted. [ more ]
Batel, I met with Dr. Cindy Kin at Stanford earlier this year to have her look at my Koch pouch because I was suddenly having problems intubating (1st KP 36 years ago at UCLA with Dr. DenBesten, then yearly revisions – last being 33 years ago). Dr. Cindy Kin came from the Cleveland Clinic and learned about Koch pouches there. I don’t know how many, if any, of the operations she performed herself while there, but now at Stanford, she is their new KP surgeon (their older expert KP surgeon has... [ more ]
My stricture was in about 6 inches almost to the valve end inside my pouch. Since I had my valve dilated, I feel the catheter needs to be left in so it can heal so the catheter will pass through. My valve is still continent since the dilation with the catheter left in. My worries are that my valve is so long, I'm afraid it will bend easily in the future. Time will tell. I had the dilation done by a doctor at Mayo Clinic. He said I may have to come back and have it done again. During the... [ more ]
See all 18 replies...
J-Pouch ForumsK-Pouch Korner
I am joining your conversation since me too I am facing a Jpouch failure and I have some interogations about K-pouch. One of them concern the old pouch. Does the surgeon, has to remove it and close the anus or does he leave it in place but disconnected? If the old J-pouch is not removed, should I expecte some problems such as leakages by the anus, pouchitis, etc. Furthermore, I would to know more on the level of risks related to the surgery for making a K-pouch. On the risk aspect, how does... [ more ]
I don't think so..depends on spincter muscles and much more for a JP. But, yes to a KP. I'd just let Dr Beiermester take over his care as planned and answer any questions. I had to wait at least 6 mos after my ileostomy to have it converted to a KP. And, my surgery went very smooth. He needs his health back right now! [ more ]
Thanks! So far we have been very pleased with Dr. Worsey and Dr. Beiermeister. Dr. Beiermeister has taken over my husband's care and has been great. My husband kept getting abscesses from the last surgery and he is still fighting that and still has a drain. Dr. B wants to wait a year before attempting another surgery. I am very curious how it will go. The 2 surgeries that my husband had with his old surgeon were both nightmares, but we are beginning to think it was the surgeon just being... [ more ]
See all 9 replies...
J-Pouch ForumsK-Pouch Korner
J-Pouch ForumsK-Pouch Korner
Shen is my on and off GI when needed. He isn't a fan of it because he pushes for the Kpouch at CC. I also don't think he gets it. It is a part of him and his superior attitude that drove me nuts. [ more ]
Dr. Rehnke at Palms did my BCIR 2 1/2 years ago. It's the best decision I've ever made. Quality of life has increased a million percent and no issues with it so far. [ more ]
Thanks Bill. With so much going on yesterday its hard for me to remember specifics. I do remember him saying that it takes up alot of small bowel and does not leave much behind in case you need some. sorry. I asked him if they made any new strides in formation of the kpouch and all he said was it was perfected. lol [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
J-Pouch ForumsK-Pouch Korner
At Toronto, Mt Sinai they use a flange/rubber band and belt set-up to hold the tube in (which is sort of complicated and akward at times but it prevents you from having to tape anything down on your skin) but I have found colloidal sheets of stretchy film (the kind that they use for burn victims) that stick to your skin...I cut the sheets down to fit around the stoma with a key-hole in the middle for the tube and then film over the tube facing the right direction (facing away and... [ more ]
See 1 reply...
J-Pouch ForumsK-Pouch Korner
J-Pouch ForumsK-Pouch Korner
Probiotics are great, but if the wrong kind are taken or too much, they can cause sever gas which can also smell pretty bad. I find that if I place the end of the long catheter in the water when I let out gas, the water absorbs the smell. There is also a great product on the market, Poop Pourri and it works real well. I take anti-gas pills and they help a lot more than the probiotics did for basic discomfort. [ more ]
I have a t valve ostomy and have some problems with leakage and gas it has got better but not completely stopped.good luck with yours. Mike [ more ]
Hi Lois, Thanks for your well wishes. I'm so sorry to hear of all the troubles you've been having. I can't imagine the pain you went through a week ago! It's such a scary situation for all of us knowing that there are so few doctors available to help us with our Koch pouches. I tried Acidophilus, but it didn't do anything for me. The type of probiotic I've been taking is Swiss Natural Probiotics. I don't know if that's why my pouch is functioning better now or not, but I'm keeping on taking... [ more ]
See all 12 replies...
J-Pouch ForumsK-Pouch Korner
Well I have had my appointment with Prof Mortensen, and the upshot is that there are two surgical options for me. The first is to try and remove part of the cuff of the jpouch to reduce the irritation, and the second is to go for the k pouch. Both have the worst case scenario of a permanent ileostomy, so I reckon I may as well go for the whole hog and have the k pouch done. Removing part of the cuff is just as risky and would only partially solve the cuff issues and none of the j pouch... [ more ]
Spogi, 1 of your problems sounds like a case of cuffitis...an irritation of the rectal cuff that is left in during the creation of most pouches...that cuff is part of the rectum and therefore suseptible to the same problems as you colon was...there are creams and treatments for chronic cuffitis that you may wish to try before moving to the next step. The cycle that you describe sounded so terribly familar...like a chronic blockage and I would have told you to have a small bowel x-ray done... [ more ]
Spongi, I assume in reading your posts that your doctors have ruled out a pouch reconstruction to eliminate the second chamber, which might result in a more functional jpouch. If you do decide to go with a K pouch, having occasional high liquid output would make more frequent emptying of the pouch necessary, a minor inconvenience. With a normal pouch capacity of 600-1,000 cc’s, you can go a number of hours between intubations. You will know that the pouch is becoming full when you have a... [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
Hi...I would do anything to save my Jpouch. The KP is wonderful but is not without risks. My understanding is that if you experience pouchitis, you will continue regardless of type of pouch. And, if you are a person with chronic adhesions, that is not conducive as you'll probably build them around the pouch causing constrictions and blockages. I'd go for a consult and get all the information. Best to you! JANICE [ more ]
Alley, Although what I did was considered controversial and unorthodox at the time (not so much these days) I went onto a full juice fast firstly (3 days) and then rebuilt my digestive health 1 element at a time. Started out with chicken breast, then a green veggie, followed by another animal protein and then another veggie...finally added the fruits but stayed totally away from carbs and dairy...that lasted for quite a while until my whole system balanced out. While doing that my GP put me... [ more ]
Thanks Sharon, just curious how you solved your pouchitis issues and how they might differ with a k? [ more ]
See all 4 replies...
Join Us!
Founder, Creative Director & Web Master
William J. Johnson
bjohnson@j-pouch.org
Bill Johnson founded the J-Pouch Group in 1997.
After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.
Forum moderator and advisor
Jan Dollar R.N.
General Disclaimer
- This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.
Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).
Confidentiality
Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.
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
Already a member? Sign In
