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J-Pouch ForumsK-Pouch Korner
A little addendum to my previous post: Some of the things that we never tell Continent pouchers: 1. your stoma is part of your body, it is not made of artificial tissue, therefore it will react to everything you eat or do. 2. If you are dehydrated your stoma will shrink. It will get tight and difficult to intubate. Use more lube. It may even crack and bleed. As long as it is just a few drops of blood, you should be ok. 3. Your stoma will react to your meds. If you take antihistamines... [ more ]
Thank you for taking the time to ask, ET_RN, I'm one of the oldies here. Almost 45yrs with my K pouch and still learning. I also took the incredibly stupid plunge and moved to Paris 40yrs ago, where no one even knew what a K pouch was. The only surgeon who I ever met who had done one, 'didn't believe in them' and tried to remove mine at every turn. I was number 13 on my surgeon's list of Kock pouches made. That said, he had a fantastic team and a great stomatherapist. She sat with me, showed... [ more ]
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Just in case someone is looking for updated information on this topic. I had my gallbladder removed at Northwestern in Chicago by Dr Teitelbaum. He consulted with Dr Strong who used to work at Cleveland Clinic with Dr Dietz. It was laparoscopic and I didn’t have any issues. [ more ]
That makes sense. Thanks for explaining. Be well and peace [ more ]
I’m don’t think Dr. Dietz can be officially listed at Langone until he completes the credentialing process that dr’s go through when they move to hospitals in another state. Based on Facebook comments, it should happen in October and folks who have been in the queue are getting ready to schedule appointments as soon as they open up. He has already communicated his scheduler’s name and contact info to existing patients. [ more ]
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OK, thank you for the clarification! [ more ]
It is the sillicium that you should apply topically, not the collagen! It helps...a lot! [ more ]
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Yes! I agree!!! Thank God!!! Its nice to have people that can empathetically relate!!! And we learn soo much from peoples stories on here!!! Forreal!!! [ more ]
Wow your j-pouch was botched by Dr. Remzi??? Damn!!! I never heard not one complaint by him. Thank-you for sharing this, I always thought he was perfect. [ more ]
I just have to say thank god we have this site to turn to. It’s so good to have people who have what you have and can give helpful hints! I’m not a unicorn. [ more ]
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I just wanted to add to my post. ...I stopped using bleach a long time ago. I clean the catheter with the brush wrap in a pipe cleaner and soap and water. And then I put it in a plastic container with white vinegar and baking soda for at least an hour or more. Hope this helps. Have a great day. [ more ]
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I purchased my Medina Catheters from Vitality Medical. You may need a prescription. If you go onto Vitality medical website and search for 'catheter' you may get urinary catheters. I just did it. But when I searched for 'Medena Catheter' I found the catheters I use. Medena Catheter 30 french. I hope this is useful. Good Luck. [ more ]
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Understandable haha [ more ]
I’m going to try and order these catheters. Freezing my marlen is working but I want one that I don’t have to go to the freezer to go to the bathroom. 😂 [ more ]
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I am so happy to hear that!!! For people that cannot have a j-pouch now have another option with a continent pouch!!! Praise GOD!!! I thought it was nearing impossible but I see its possible now!! Thank-you!!! [ more ]
Dr. Kiran probably does the most continent pouch surgery in the U.S. Very talented and caring. His practice, Columbia Surgery, is located in a building right next door to New York Presbyterian Hospital. I traveled to his office for a routine scope a couple of weeks ago. He repaired my valve and parastomal hernia in 2019 and I’m doing great. [ more ]
Found him!! Thank-you!! I was scared no surgeon does that surgery anymore! Glad there are some that still do! [ more ]
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this could help stoma nurses explain to potential k and bcir patients. it doesn't fill in the pro and con details, but that's why we help each other on this site! btw, i use a fr 34, which is denser, as he explains. it enables me to enlarge the holes. be well, jan [ more ]
Just to add: A very informative video clip, from the BCIR community with reviews of Marlen and Medena straight and curved catheters. https://bcircatheter.com/video/ [ more ]
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Oh that is soo cool! I love that! I think that is great! Too bad its not as common as it use to be. I love how you are free from butt burn lol. I always thought the barbie butt was awesome!! Carrying the catheter when leaving the house must be annoying at times. But honestly that is way better than dealing butt burn, butt burn hurts lol. [ more ]
correct [ more ]
Oh cool, I guess there is not need to check then, that is cool! Do you have the barbie butt??? Like sew everything shut where there is no crack or opening??? And you you have to patch up your stoma??? [ more ]
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J-Pouch ForumsK-Pouch Korner
J-Pouch ForumsK-Pouch Korner
Hi Jan, I do hope that things have calmed down a bit. 1. I never had bleeding with pouchitis, as far back as I can remember. 2. I have had bleeding for other reasons like an irritated stoma, granulation on the stoma (little white or red bumps that grow and build up on the pink tissue of the stoma). I have to cauterize them regularly. It doesn't hurt but afterwards it bleeds quite a bit for 1-2 days...then fine. 3. Everyone has different symptoms with pouchitis and different causes. Sometimes... [ more ]
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Kim Have you read the post about anti depressors? Not sure if this is your case but I found it interesting that for some people it may explain unexplained leakage. ... just in case, check it out on this forum. I hope that it is nothing serious. Sharon [ more ]
Well, things were going great after the 2nd revision (June 18th), but I am back to experiencing leakage. At first it was very small amounts, but it has been increasing in amount and frequency. The only good thing is that it never leaks while I sleep. I have an appointment for an ileoscopy on October 24th. This has been a very trying 12 months. After almost 37 years with a K pouch, 35 of those years with very few issues, I'm so frustrated. I may put the NuVal back in. [ more ]
Kim--fantastic news and congrats. the bruising feeling lasted with me for many weeks and indeed it is bruised. would be good to know if there is anything one can do to relieve the problem. hope you are able to rest and stay cool to continue the healing. best wishes, janet [ more ]
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J-Pouch ForumsK-Pouch Korner
Marsha – Did Dr. Shen mention which muscles were problematic? Sure hope you can make it until September. Sounds like a tough situation, for which I have no suggestions other than standing up or lying down when inserting. Did Dr. Shen have others aside from leaving a stent in to expand stoma? Yes, please keep me posted. Jan. [ more ]
Thank you Jan for your “positive” response!! I just made my appt for sept and not worried about stoma being tender—-because it’s already tender just using the 24 fr. This happened right after my yearly scope in June. He did dilate the inside a bit In June, but I never expected this to happen. I’ve been having scopes for about 12 years and it’s always been ok. I think I will have anesthesia since my husband will be there —but maybe not. Dr Shen said the dilation takes one minute. I asked how... [ more ]
Marz--YES Dr. Shen dilated my stoma two years ago. I am still so pleased as able to use a 34 fr. Because I didn't have anybody to pick me up he was kind enough to do the surgery with lidocaine shots to the immediate area. The anesthesia team was convinced it wouldn't work but I'd do it the same. Ask him for his opinion on it. Stoma was tender for a week or so afterwards, but not a problem. Can't speak to the granulomas other than mine are very small. Yikes, that sounds annoying, at the... [ more ]
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Yes, 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 ]
Do 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 ]
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Hi, a couple of thoughts here, 1. your pouch may have a slight twist making it smaller and when it fills the valve tends to clamp shut. 2. If it is a living collar type of K pouch (mine was converted for the stability about 12 yrs ago) then it automatically fills the collar like a doughnut and clamps it more shut (grammatically wrong but biologically true!) 3. a dropped pouch can fill and sit on the bladder. When the bladder fills it pushes it back up and makes it harder to get the catheter... [ more ]
Grandmaof1- no, we aren’t talking about a j pouch, we are referring to an internal continent reservoir which is a K pouch or Kock Pouch named after the original surgeon. There is also a similar internal reservoir called a BCiR. These two internal pouches are similar. They are drained a few times a day by inserting a catheter into a type of stoma on the lower abdomen and through a valve (made of small intestine) and just drained into the toilet. You decide when you are going to drain it. In... [ more ]
So after reading everything I have a few questions. Are you inserting into your rectum? My new surgeon said he had one other patient do this and it works great for her. But I’m not sure I can do this. This jpouch has taken to many years of my life away. Sorry if this doesn’t relate to a jpouch. Thank you. [ more ]
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Thank you Sharon! [ more ]
I cross my fingers for you...hopefully this is an answer... [ more ]
I 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 ]
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I'm posting all over the place today! Thanks to this site, SKN69 & Creampuff, I found a German surgeon who does K-pouches. I met him on Tuesday and was favourably impressed. I was quite desperate at the time. My recent crisis is over, but it was such a relief to have happened on this site while in hospital and discover other older K- pouchers have had the same issue. Now I also have knowledgeable help at hand if the problem returns. [ more ]
Thank you so much Vanessa & Jasmine you don't know how wonderful it is to connect to someone in the same boat as you! Happy New Year! [ more ]
I stand up and bend over too with the cath pointing in the toilet. Everything comes flying out that way. If I sit on the toilet I am there too long. I want in and out in 2 minutes. [ more ]
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J-Pouch ForumsK-Pouch Korner
Just checking into the thread since it went OT for a bit but I am doing really good for the past 2 days. I wasn't 3 days prior, went off the antibiotics and switched to probiotics. My pouch was bad and I had the usual glass shards pain shooting up my rib cage and pouch and everything was just pure clear liquid coming out of me. So went on cipro and few hours later I was good. I am now on a sublingual previcid for my severe inflamation in my esophugus and gastritis. My gas is still there but... [ more ]
Adam.. I don't have a kpouch but had the jpouch removed and "barbie butt" just 3months ago. This pressure and pain you describe was happening to me last week and then like you said it all burst out with fluid everywhere, guess it was an abscess. So Vanessa.. should you have that checked out too as mine was started with what seemed like a blister. I saw the doc yesterday and was told this could just keep happening. I had abscesses while hospitalized and had one drained in another surgery and... [ more ]
Carrot & apple juice....I forgot...the 2 things that I have found that are astringent enough to 'dry out' a wet gut (read: high motility, over liquidy stool etc)...also, and you may find this useful if you are trying to taper off of all unnatural products, Active Carbon....you can make it yourself by burning a piece of toast but you can find it in pill form at your local health food store...it is another 'grandma's remedies' or in this case, grandpa...in the war when everyone was... [ more ]
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J-Pouch ForumsK-Pouch Korner
Peter, regarding the odor issue, many years ago I started taking a digestive probiotic and it reduced the smell a decent amount. I also know that some people use Devrom. I wish you the very best!! [ more ]
Going to the restroom at an office building or other public places is the one time I wish guys carried purses. I never needed to irrigate to go to the restroom in a reasonable amount of time, but cleaning the catheter was a problem. When I was young and did whatever was necessary to have a normal life, the way I cleaned my catheter was not pleasant. I did this for over 25 years and then was able to move my work home and one of my big motivations was to not have to do the things I did for so... [ more ]
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Thanks, I appreciate the info! [ more ]
Hi Debby, Thank you. I am a survivor like all of us here, with just a bit more experience than most people...that gave me time to experience more disasters! What is a hook up kit? I start with a large makeup bag and add a free mini tubes of lube, 2 or 3 different sizes of tube (24, 30 and 32 plus a folley Cath), a guide wire (a stiff semi rigid wire that you can place inside of your Cath to help push it past twists or turns in your valve... and once in you can pull it out) , transparent or... [ more ]
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Emilyjt Will be sending you prayers and the best of thoughts for your upcoming October surgery. You have been through a lot and deserve the best, keep strong .💕 Let us know how you are doing please. Janice [ more ]
I had had a total colectomy due to slow transit megacolon and rectopexy due to prolapse and my small intestine was connected directly to my rectum. This led to chronic diarrhoea and rectal spasms which were constant and debilitating. After much research I decided to be the 4th person in Australia to get a K Pouch. I underwent my initial surgery in early February. Due to many complications I have undergone about 15 surgeries since, the most recent of which was creating a temporary ileostomy... [ more ]
Robin Good idea on the cup of water! I also use the enema bottle suggestion that was given now. Lots of restrooms are not offering any selves or hooks anymore, let alone sinks in the handicapped spaces. Just saw that today. We are now seeing a lot of unisex bathrooms where you share sinks in the middle of the room and no walls at all! Just a 4 foot little door.Horrible idea, I ran into that in Europe a few years ago too. Schools are doing that also, oh my, no where to go in times of stress... [ more ]
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Where to buy catheters: first, check with your insurance company because if your supplies are covered, they may have a preferred distributor, like Byram Healthcare. Medicare does cover continent ostomy supplies and so does UHC — I'm sure many others do as well. Second, your surgeon would tell you what size catheter you need. Typical sizes are 28FR and 30FR. Marlen and Medina are popular brands of catheter, 15 inches in length or longer. Direct suppliers for catheters and other stuff: just... [ more ]
Could someone give me a link so I know where to buy one of these catheters? [ more ]
I was boiling the catheter so it would soften and slide in easier and cause less pain. I wait for it to cool down to room temp before using it. However that stopped working for me so now I’m back to freezing. I’m also finding luck with a smaller catheter- although it takes forever with the smaller holes. A large part of my issue is waiting too long to intubate like LadyTay said. I just started back working and I’m not comfortable intubating away from home yet. Even when I don’t wait it’s... [ more ]
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I'm not sure about K pouches. [ more ]
I heard about him! Thank you! But I don’t think he builds k pouches, right? [ more ]
I tried to see him back in 2012, but he did not accept any insurance, so.... I did see Dr. Toyooki Sonoda who was fantastic. He's now at NYU Langone. [ more ]
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Hi, I've had my K pouch for 45 yrs now (yikes!) and have had different periods in my life where my diets has varied. Firstly, your best friend, at least for the 1st year, will be an immersion blender. The hand-held kind that allows you to blend anything you like into a purée or a soup. It chops up chunks and breaks down fibers. Depending on the condition of my pouch at the time, I have just turned my fruit salads into smoothies and my vegetable soups into creamed soups (without the cream!). [ more ]
Next year’s QLA conference will be in Cleveland Ohio. The hotels have become very expensive for our conference’s so the organization is trying something new for 2024 and Dr’s Dietz and Miller-Ocuin have offered use of University Hospital’s conference services. There is a hotel across the street from the hospital where folks will be staying. [ more ]
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Hi @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 ]
I 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 ]
Hi @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 ]
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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 ]
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Hi DB20, how can I help you? What do you need to know? What medical info can I give you? I have lived in Paris for over 40yrs now and have a good network if you need it. Just PM me. Sharon [ more ]
Thank you. [ more ]
The best one that I know of is Dr. Gabriela Möslein 47053 Duisburg, Germany 49 152 0203 6008 0 You might also want to join the Poucher Lifestyle Facebook group that is hosted by Sharon Neuman Cochrun who lives in Paris. [ more ]
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Hi Winterberry, No need to apologize ; ). I do enjoy sweet potatoes and japanese sweet potatoes. Unfortunately, leafy vegetables cause me gas and bloating. I appreciate your suggestions that have been very helpful. I have more ideas to work with. [ more ]
Hi, Sunshyne89. I have a j pouch! I'm sorry I wasn't clearer! If broccoli and cauliflower are not options, how about sweet potato? They are more nutritious than white potato. You could make SP fries by slicing, tossing with salt, olive oil, and bake until crisp. Or poke holes into sweet potato (no need to peel) and microwave. A good easy snack. Can you eat leafy greens? [ more ]
Hi WInterberry, I am going to try the spinach and see how my body reacts to it. I know broccoli and cauliflower are not an option for me. I have tried them in my early stages of the BCIR and it gave me terrible gas and bloating. Do you have a BCIR or Kpouch? How long have you had it, Thanks : ) [ more ]
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I saw Prof.Dr. Kroesen yesterday. It looks as if the valve is no longer inflamed and he inserted a catheter with no problem so I am hoping that things will return to normal for a while. I really liked this surgeon - personable, helpful, knowledgeable. He has had several patients with 'older' pouches who have had similar intubation issues - it is apparently not uncommon (and when you think of it - 30+ years of wear and tear)! Two of his recent patients had their pouches created by Dr. Koch... [ more ]
My Gastroenterologist met Dr. Kroesen at a conference in Berlin last week and spoke to him about my problems. He can, apparently, replace the valve if necessary and has also had good results wth 'stretching' the narrow spots. Can't wait to meet him next month! [ more ]
Hi Pam, I'm so glad for you. Peace of mind is priceless. I have read a good amount on him and will be making an appointment with him and Dr. Ecker myself. I know I'll eventually need a surgery and I want to meet them both to see who I feel most comfortable with. keep us posted! [ more ]
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beth w--how was consult with dr dietz ? decision? are you now a k-poucher, in our korner? humor essential. jlh [ more ]
Just the dates and the Cleveland location: Sept 19, 20 and 21 of 2024 the conference committee will be planning. [ more ]
Kim – thanks for that information. Is there any written information from the conference? Beth– I had a failed J-pouch. [ more ]
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Wow that is crazy! I am sorry to hear that! I see leaks are pretty common in all types of pouches. [ more ]
My 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 ]
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Food with Flagyl may help. I still get a belly ache. It's a nasty drug. [ more ]
have you considered the lowFODMAP diet? i've posted info on this forum. it changed my life. difficult diet at first, but also consider it is only for 6-8 weeks, after which time you start re-introducing foods. if it works you will know within the first week. janet [ more ]
Should always take antibiotics (flagyl) with food. Ray [ more ]
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"""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 ]
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great to get appointment! [ more ]
Finally have a video appointment with dr Cindy kin at Stanford on Friday. The last person I spoke with said they can’t see where I’m at and if asked to tell them I am in California. Hopefully all goes well and I will be able to get a real appointment to see her soon. [ more ]
amos-- I think the 'need to be in state' is state law. some states don't have them. I just say I'm in state. suspect the docs don't care. I agree your situation is frustrating. sorry I have no suggestions. when there are delays to get an appointment i often request to see their pa or resident or whoever works under them. or i get my pcp to make the connection, although i doubt it would help in this case. perhaps your pcp has an idea. afterall, they know how to make system work. jan [ more ]
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Hi 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 ]
posted 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 ]
Hi 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 ]
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have you checked in with the stoma nurses? re pain and intubating techniques? some suggestions: use lots of lub. pee so that bladder is empty and it also relaxes you more. put catheter in freezer for 20 min. stand up--w cath kinked over or clamped off--and lean forward a bit, or kneel in front of toilet. most of all relax, relax, relax. if you can't get cath in then stop for awhile and don't tense up. it takes practice!! [ more ]
Shavon, There is pain and then there is Pain. For now, you are post-op, things are not even close to being healed, things are finding their place in your body, settling in and learning their new functions...there will be pain, discomfort, and fear. Lots of fear, panic, and confusion...this is all so new to you, so different. So give it time. Relax (I know that that is the hardest thing to do) and do not expect too much too soon. It takes time. There is no rushing this stuff and it is going... [ more ]
I was just saying that to my mother as we were struggling to flush. We tried something crazy and it worked and she told me to be patient as we sometimes figure out strange solutions- like I did with my ileostomy. I told her that the difference is that figuring out solutions with my ostomy bag wasn’t painful like this. I can’t be patient with trial and error when I’m in so much pain. I’m really wondering if I made the right decision choosing to come to Cleveland for a Kpouch versus staying... [ more ]
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At 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 ]
I flush once every time I empty my pouch. [ more ]
Thanks, Kim! I start that in two weeks. Hopefully as i clamp over these two weeks I can help my pouch adequately grow. [ more ]
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I don't know if this is helpful but the only time I ever noticed an odor is when I'm using the bathroom. Once I pull up my pants I don't notice it. And no one has ever pulled away from me or said anything in regard to if they noticed something funky. When are you noticing this odor? Do you have anyone you could ask if they smell anything? What does your doctor say? Have a marvelous day. [ more ]
Jan15, during the week, I wear scrubs while I’m working. I use cotton pads underneath an adhesive which allows me to change the pads throughout the day when they become saturated. I typically only wear the Ampatch on the weekend when I’m in regular clothing because they are less noticeable under form fitting clothes. I have noticed the odor while wearing both kinds of coverings. My fear of others noticing the smell is because I work in very close proximity to other people. I am a dental... [ more ]
I also don’t think other people notice. Could you try not using an Ampatch for a while and see if the smell dissipates. I happen to have quite a bit of mucus so I use nursing pad, which conveniently adheres to my under pants. Some days I need to change it more than once. I also think that would be better for your skin than having the ampatch on all the time. [ more ]
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At home, I use coconut oil. I keep it in a smaller container in the bathroom. It will solidify. I have traveled with it. I put the container in a ziploc (which was a good thing). It became liquid and leaked a little. But, definitely at home, coconut oil. [ more ]
I use KY gel, available through Amazon, or your local sex shop ) [ more ]
I use the store brand at Wall-Mart. Cheapest around. Lube is Lube. Well, unless you take your auto to Jiffy-Lube. That's another story. PS: I do sometimes buy the little packets of Surgilube to keep in the car or in my pocket in case I have to intubate away from home. [ more ]
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Sharon, I was happy to hear you got your test finally -- and now this. One step forward, but headed up a very steep hill. I hope you are doing better nutritionally as this has got to be taking its toll. What a warrior you are! I also understand and admire your dedication to your son! I've been though my own personal hell with this disease while raising my two sons from 9 & 11 to now 15 & 17. They are so challenging and amazing they defy description -- I don't know what I would have... [ more ]
So after 3 weeks of leaving messages, being ignored by secretaries, nurses, staff, and anyone else who answered the phone.....I lost my marbles on the doc's answering machine. The doc himself called me. He did apologize for the delay in anyone calling me with any kind of results. He said the pill camera showed a huge area of ulceration exactly where I complain of the pain and noise in my belly. It's at the same spot again....the take down/stoma/anastomosis spot (which I had resected in... [ more ]
Congratulations!! Now let's see what is going on in there... [ more ]
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J-Pouch ForumsK-Pouch Korner
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 ]
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 ]
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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If I am really thick I drink broth and grape juice along with coconut water. If I am really stopped up (if I eat a lot of nut breads or raw vegan dishes) and need extra liquid help I will down a bit of Milk of Magnesia. I drain my pouch 2 times a day usually. I eat about 2k of calories a day. I actually like my pouch to be smemi-thick and it usually is so I can hold it easier. If I eat a lot of stuff that makes me runny like sugar I drain maybe 3 times a day. [ more ]
Thank you! I'm hoping and praying I can get a kpouch as I think it would make my life so much easier, I've just been afraid it won't if I'll still be in the bathroom a lot. The only time I can go a while without emptying my bag is when I take Immodium or eat potatoes/bananas/peanut butter. I know you don't want output to be thick like that with the pouch though. [ more ]
Exactly what Jasmine said. After it matures, it will "tell" you when to empty. You'll get feeling of fullness, sometimes a little cramping. [ more ]
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I am a 70 yo retired physician diagnosed with severe ulcerative colitis at age 15.I experienced the ulcerative colitis hell until I was 18 at which time I recieved a Brooke ileostomy (bag) in 1970.I was happy as a clown in that the U.C. Joint arthritis,weight loss,etc. disappeared. For cosmetic concerns I recieved a K pouch in 1979 at the Mayo Clinic and a redo in 1980.It served me well for 40 years until I had a valve slippage in 2021. After doing some research I opted to have Dr. Dietz... [ more ]
Hi Jan15 - I’m converting from a loop ileostomy, which I’ve had for about 7 years. I’m about 45 and have had Crohn’s since I was 20, although it has never been in my small bowel — which makes the k-pouch a viable (and the only) option for me to get rid of my bag. I’m a very active person and have been on a quest to get rid of the bag ever since I got it. I have wonderful doctors at a world class IBD center, but nobody mentioned the K-pouch option until I did a virtual second opinion with... [ more ]
Dr. Dietz did my conversion from J-pouch to K surgery in 2015. I now go to NYC/Columbia due to convenience and just for routine scopes. If I needed a major revision I would go back to Dr. Dietz. He is fantastic. Every Doctor who has scoped my pouch comments on how well-made it was. Many of the Cleveland clinic K pouch doctors have left and are in NYC. What you hear is it’s past reputation. Dr. Dietz had been at Cleveland clinic. are you converting from J to K? [ more ]
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Hi 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 ]
Hi 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 ]
Hi 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 ]
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Sending healing and encouraging thoughts. You’ve been through woefully too much and you deserve the best. Janet [ more ]
All sounds great, can understand feeling cautious, hope the time flys by with no hurdles. Hoping you’ll be the best ever real soon. [ more ]
Appt went well. Staples removed, catheter removed. They filled the pouch with some water and had me move around. No huge leaks. I have to put the catheter in every 3 hours (only once during the night as long as I don’t eat late) for 3 weeks. Then I can go longer between intubations. Everything is still a little tender. The stoma still needs some time to heal. It’s a little sore. Doc wants me to call him in 3 weeks. I’m cautiously optimistic. Hard for me to get my hopes up yet. [ more ]
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There is a new doctor that works out of Olympia hospital that works with Dr. Don Schiller. His name is Dr. Pouya Benyamini and his number is 310-526-0290. I believe he is familiar with all pouches including the kock pouch. [ more ]
Dr. Beart did my J pouch surgery at Mayo Clinic in 1983 and I highly recommend him. I do not know how active his practice is or if he has retired. He could recommend a gastroenterologist for your daughter. Since I have FAP, I get a scope exam annually by my GI. The person’s diagnosis usually dictates the frequency of scope exams. Another excellent surgeon in LA is Dr. Don Schiller, but his specialty is the BCIR. [ more ]
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Yes a hair analysis reveals so much. I became very ill around the age of 35. ME type symptoms. No help from GPs. Got myself to York here and saw alternative doctor. Brilliant. Yes is showed up magnesium deficiency, selenium and chromium levels so low. very strict healthy diet which I still remember to keep to. It does work. [ more ]
Initially my surgeon said to me that if I am gaining weight than I am absorbing...That was the 70's and we have come a long way since. I used to juice including major mineral-rich foods like parsley, cilantro and other herbs now I just blend...don't bother throwing away all of the goodness (and it slows digestion to allow me to absorb a bit more). Some things are absorbed through our stomachs (not many) like sugars, alcohol and certain meds but most foods absorb through our small bowels. [ more ]
Yes I feel lack of absorption compromises our ability to maintain a balanced benefit from many of out diets. I take a good quality multi vit and mineral tablet each day. [ more ]
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I wear a medical alert ankle bracelet which says continent illeostomy contact & name & number if my surgeon plus med alert #. [ more ]
Yep, that is the main function for the Medic Alert> as in being unconscious and taken in to the ER or worked on in the field. I have not had a new one but now I have a reliable surgeon that is not only proactive but knows how and what to say. But we are living in this different world it seems and even being conscious I have had ER doctors ignore my plead to consult him in a crisis. Now today I just hope they would look at my Medic Alert Bracelet or necklace. I am planning on getting one... [ more ]
When I went to the ER I was conscious and admittedly they didn't look at my medic alert either. Hopefully if someone is unconscious they would look for and at it. It bewilders the mind that the ER staff would not take your written information. The nurse did take my written information I had but wouldn't keep it until I told him to keep it. Then he did until he finished inputted all the information. But he did take it. And when he gave the paper back, I gave it to the doctor who used the... [ more ]
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ok, i'll follow your orders as i have a tendency to be oblivious to pain and forge ahead just to get something done. i'm fortunate that the woman who cleans for me will be able to come in on a daily basis. so too the carpenter to help move stuff or anything heavy. i'd be happy to stay in a rehab place for a week after the surgery, especially since i've read that it is usually a 10-14 day stay and this doc is saying 7 days. for that extra week i would absolutely need my electronic devices. [ more ]
Ok, first off, do not worry too much (that does not mean not to worry at all) about the short gut syndrom...according to Dr Cohen, my k pouch surgeon (been doing them since 1977ish and learned directly from Prof Kock), you still have more than enough...When the non-stop k pouch complications hit me he told me that even if he needed to remove my pouch he would still have enough gut to rebuild another one without any difficulty...so technically you are fine...just don't go throwing them in the... [ more ]
Originally Posted by skn69: Hi Janet, Wooohooo! That is good news (in as much as getting a date to have someone take a stroll through your guts and knit them into a sweater can be good news!)...are you happy about it? How does the news make you feel? Happy? Excited? Terrified? unsure? Impatient? All of the above? For me it was a relief every time that I managed to get a surgeon to move forward towards a treatment or surgery (I wrote 'cure' but erased it...we are never really cured but... [ more ]
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I used a clamp until it didn't work right and just added weight. I use these and they rock! It is a plug for the catheter. https://www.edgepark.com/shopcatalog/item/570414l [ more ]
Yes I agree. On the outside of my valve it is covered in ulcers due to problems inserting catheter. I was not aware of this until a more recent examination of reservoir. Reservoir 100% perfect after just under 40 years. Best wishes for 2013 to everyone. [ more ]
Sounds like a good idea, think ill try that, I don't mind leaving the cath in, I just hate the bag, think I'll clamp it, thanks guys!!! [ more ]
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That is so dangerous Ad, You need to be able to move forward with your life no matter what happens, no matter what medical solution you get..as long as you are no longer in pain, suffering or incontinent...life is way too short to waste on the stuff that we cannot have, you need to grab what you can get (which would not prevent you from getting a k pouch further down the line if and when possible) and heal, live and enjoy a bit of life...then worry about other stuff...for now this... [ more ]
Thanks for the offer Sharon. I feel like that will just backfire on me and give the guy who's caused all this more ammunition. Even though our hearts would be in the right place, I think it would be seen as undermining my surgeon. I can't get out of my head how close I was to a better life(maybe of course). Just keeps running through my head. Ad [ more ]
Ad, If you can get hold of your medical file, please send me a copy and I will forward it off to my k pouch surgeon for a consult...then if need be and if he agrees, he can send back an opinion on your K pouch worthiness and maybe change your surgeon's mind... Sharon [ more ]
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like sharon I don't get anesthesia for my scopes. one reason is needing to be picked up by somebody, which doesn't work for me as not in my home town. but biggest reason is I want to see pouch lining condition, and be able to communicate with doctor during/after procedure. this is especially helpful if there is a problem. jan [ more ]
I go to dr Shen yearly for my scope. He uses miralax for prep, 2-4 ounces is always enough. He also started me on entivyo for pouchitis and it is still working after 2 1/2 years.(local dr does orders for this) most local GIs know Shen is the expert!! Previously I was on the rotating antibiotics and ended up with c diff. I wonder if Dr Shen still does video visits?? He said he really enjoyed doing them during Covid. Maybe you could get another opinion from him?? good luck. [ more ]
I only get scopes as needed usually for a pouch twist, a valve problem or leakage (normally due to my pouch falling off of the wall). I stick to a light meal 24hrs prior to the scope and no fibers. I switch to clear fluids after 6pm. That is it for the prep! No bowel prep, no magnesium whatever. As for the scopes, I have never had any anesthesia since I've had my K pouch. I watch, comment, direct traffic so to speak. They use a simple child's scope so as not to injure my pouch and usually... [ more ]
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Your welcome, hope things get better. I would see a gastro at this point. [ more ]
Thanks 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 ]
Hi 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 ]
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Wow 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 ]
Catheter 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 ]
Are you guys talking about a catheter in a ostomy??? [ more ]
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Jan, thanks for the input. I'm now decided to give my pouch another year; if I can't stand it, I'll go back to an ileostomy, which I'm also researching. I really appreciate your post. Kirsten [ more ]
Hi Kristen, Jennifer have you a really good idea of what life can be with a Kpouch! Of course all are different. I got my K after 2 Jpouchs.I was left with a severe motility issue and went from an altered diet to just a handful of items I can digest and/or pass through that 30 Fr tube. Jen is so correct about telling you that is the only way to pass gas also. All of a sudden your belly is huge and you are frantically looking for the John.It has now become problematic to get supplies in a... [ more ]
I hope things are ok with you. I am a long-time k-poucher and now have trapped gas pains. I have taken a few gas-x tabs. Nothing seems to work. I always worry about a blockage. Any ideas? [ more ]
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Had mine done at Mayo in 1975. For 37 years no problems that required a doctor and I stupidly did not even know any doctors who even knew what a Koch Pouch was. Then all of a sudden I couldn't get my tube in, not good! My opening had gotten too small to let the catheter in. The wonderful Dr. Beart , who got to Mayo a few years after my procedure and is now retired, went in and spread the opening out. Dr. Beart was not sure how long the fix would last as it was a very unusual problem, but it... [ more ]
40 years with no revisions, impressive!! Wow! Wonder how many others out there with their original procedure? [ more ]
So nice to know that I am not the only 40 year Koch poucher. I have a friend who is also 40 years, she has never had a any additional surgery for her pouch. I love to hear what works & what doesn't. Thank you all [ more ]
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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 ]
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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 ]
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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 ]
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Sorry folks when I find an interesting article on my Apple lap top, I cut and paste the address and e-mail it to myself. Then I can pick up the e-mail on my PC which is connected to a printer, and print a copy. But when I try to share this web site using the Ctrl V, somehow buried in that url is a link to my e-mail. Here goes again, I hope this works. This article is written by a Doctor who has thoroughly researched and tested the efficacy of use of H2O2. Here is the link ... [ more ]
DZ20, I started eating a 'dissociated food diet' around 1990 (it was fashionable at the time) and discovered that my pouch loved it. I ate mostly animal protiens (meat, fish, chicken, sea foods etc plus some hard cheeses, soya and nuts) along with tons of raw and cooked veggies, had my fruits and fruit juices for breakfast or 4pm snack and avoided too many carbs. I gave myself 1 carb day a week where I allowed myself to really enjoy my bread, pasta etc and I maintained a happy and healthy... [ more ]
I eat everything at 2 years out. I had a rough 2 years but now I am golden. No issues at all with my BCIR. [ more ]
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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 ]
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 ]
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 ]
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As my dearly departed sister-in-law once remarked...everything causes gas! The trick is to combine your foods so that they create the least amount of gas possible...I had a lot of success with a dissociated diet where I never ate carbs with protiens and kept my fruits to seperate meals...I ate fruit and drank fruit juices in the morning and for 4pm snack, ate either meat/fish/chicken etc with veggies for either lunch or dinner and had carbs (rice, bread, pasta, potatoes) with veggies for the... [ more ]
I get HORRIBLE gas pains and buy Beano and Gas X by the case! I was told that sugar causes excess gas - and to eat a high protein diet... [ more ]
I chew gum. works like a charm for me. [ more ]
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Thank you Bill. Yes, it is Dr. Schiller, and I tried to hook up with him a few years ago. He was very willing to work with me, but at the time my mother got very sick, requiring 24 hour care, which I provided, despite my pain. Unfortunately, or perhaps mercifully, she died late last year. I will begin my insurance search, but like I said, come September, my company, by far the biggest one in California, is leaving the market, and I don't know if Aetna will work, but I'll try. But my first... [ more ]
Dave, the BCIR is definitely worth fighting for, provided you are qualified medically for it. You should have sufficient small intestine to make the pouch. I am assuming from your location that the doctor you referred to in your post is Dr. Don Schiller at Olympia Medical Center. He has been doing BCIR’s for many years and has an excellent reputation. I suggest that you first contact his office to see if you qualify medically for the procedure. If so, you can then discuss your insurance... [ more ]
I have a long history with illeostomy, then a K pouch, then the illeostomy again. I hated the illeostomy for obvious reasons, and for a while, the K pouch, done by Dr. Launer was fine. Then I started getting pouchitis, again, and again, worse each time. I had to have it taken down to an Illeostomy again. I've now spent over a decade with that, and I'm at the end of my rope. I'd rather well, I won't finish that sentence, but I desperately want the BCIR, and have a local doctor and hospital... [ more ]
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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 ]
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 ]
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 ]
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Try www.Torbot.com A great customer oriented company that often provides free samples. Also got curved ones (there is a list of international distributors on this site) from: http://www.wellspect.com/Produ.../Ileostomy-catheters Pamela [ more ]
I use the weber and Judd catheter I think it is the best on the market. But it is expensive. It will last a long time [ more ]
Thanks Sharon, Have ordered some from Stomabags.com. Never ordered through them before, so crossing my fingers it works out. They carried both the Medena and the Marlen lines. Got some of the Marlen curved 30Fr, as they look like the best bet for me, but I wanted to try some of the others too for when the time comes to use them. I browsed a lot of places before that, but only a few ship outside the USA. The Weber-and-Judd for example was only available through merchants that shipped within... [ more ]
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Hi 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 ]
Recently 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 ]
Thank you. I will be trying the bath, that sounds good. [ more ]
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I am also wondering if he did have consultation with overseas patients during the pandemic as the patients couldnt travel due to restrictions, if that would also be possible if someone cannot travel due to his physical condition(?) [ more ]
thank you have opened the link and searched for "pouch" or "shen" but this returned no results on past events. (?) [ more ]
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Hi, Dr. Bo Shen is now at NYP Columbia. Best wishes [ more ]
Not 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 ]
Oh boy. Not the results you were looking for. Maybe experiment with 1/4 of a pill. [ more ]
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I understand Robin, My puppy was my solace while growing up sick. I got when I was 12 and she died while I was going through chemo at age 28...I never got to say goodbye... We love our animals because they devote their lives to us and our happiness so we give them our all...all of our love and devotion...but we cannot save them once their time has come, we can only make then comfortable and give them our love and gratitude. I hope that your puppy heals and that she (?) spends long years by... [ more ]
Are you a member of the BCIR Facebook group? I believe I have seen posts related to surgeons in that area. You could do a search of posts. P. S. I’m glad your dog is feeling better. [ more ]
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Thanks. My intestine is olaced right above the stoma so the bump is because of this...not sure if real word is hernia...but now the hole being too large the valve moved up by 1 inxh..they brought it back down and stitched the skin aroung because was leaking... Hope it was hekp..they hope the skin could rebuilt and close the entrance more but but many questiobs will i still be continent... If need to refix or stitch the valve under can they do it without majot abdomen openings... i want to... [ more ]
myriam by prolapse do you mean that the valve is outside of the stoma? Or is it that the stoma sticks out, but your valve remains continent? The reason why ask is I have the latter condition – – a bulge sticking out from my tummy – – and the problem is a hernia right next to the valve. I'm scheduled for surgery, which will reinforce where the hernia is, in December. I am wondering if you have a hernia or if this is how your prolapse started. Sorry about your condition and I hope your doc is... [ more ]
I PMed you Myriam... Talk to you tonight. Sharon [ more ]
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(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 ]
So 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 ]
My 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 ]
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I actually buy U by Kotex Security Ultra Thin Pads, Regular, Unscented, 44 Count. I cut them in half. They adhere to my underwear and cover the stoma. I have used these for years after trying others that weren't as gentle on my stoma site. As a male, I used to get some funny looks buying multiple packs at the grocery store...but Amazon has pretty much solved that difficulty!! [ more ]
Hi Rosie. Ampatches are made by Austin Medical in New Hampshire. They are very helpful in recommending the most suitable patch and will send you free samples. Austin will bill Medicare for you, but you must pay them the full cost at the time of your order and then Medicare will reimburse its share directly to you. If you want Medicare to pay the supplier directly, you will need to order from a Medicare authorized supplier like Edgepark or Byram. In order for your Medicare supplement to pay... [ more ]
Hi Rosie, I think the company you are talking about is AMPatch. I use them and my insurance and Medicare pays except for the co-pay. Their Phone is #800-223-9310. I found them very helpful and they will send sample packets, they have catheters, syringes, etc. I very much like the stoma covers unless I am really, really, having a problem. Give them a try if you want & get some samples. Good Luck. JudithS. [ more ]
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Is it reversible? Once you get peripheral neuropathy is ith permanent? Sharon [ more ]
I feel so dumb asking this again - asked it on another thread - I have taken some anti biotics off and on thru years - but not all that many. I am wondering if maybe with my symptoms if I would do better taking more of them. I've always been "tough it out" or "stay home more" - in terms of dealing with issues rather than take more drugs - but maybe I've been too cautious and could have gotten more relief over the years. Jan- thanks for a great explanation about neuropathy and ways to look... [ more ]
I was took flagyl in much larger doses for c.diff in my colon and also in my j-pouch. I was rotating it and Augmenten every 2 weeks and noticed my peripheral neuropathy in my feet got worse when taking Flagyl. I quit taking it and rotated with Xifaxan instead. I can't take Cipro either. I already had peripheral neuropathy so it didn't cause it. Just made it worse. Things were like Jan explained above. I hope you are feeling better soon. [ more ]
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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 ]
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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 ]
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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 ]
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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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 ]
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J-Pouch ForumsK-Pouch Korner
Great news! Always go to the experts...and don't wait around...it is your health that matters. Sharon [ more ]
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 ]
Thanks Sharon Can you tell me who Jan is? I didn't see her on this thread. Thanks! [ more ]
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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 ]
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Woodstock, I do not ever take coated of LP (prolonged release) pills...they leave my body long before they are digested but when my pouch is being pouchy, it chuck things up and out long before they can be absorbed..even the simple stuff... Some tricks are cutting or crushing pills but you need to ask your pharmacist first if you can. Sharon [ more ]
We were always told not to take enteric coated pills such as this sera enzyme suggested [ more ]
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Oh, it was called a fistulagram. Even though they did not suspect a fistula, the surgeon wanted to be sure what was going on. It was a tiny needle the tech inserted very very gently, just enough to get the tip in. I still have my spincter muscles so squeezed them to keep it in (plus he taped it cuz he knew the opening was so small and not deep) through the 5 minute test. [ more ]
Thanks Janice ! I see my doctor today & will def'ly ask for an X-ray and go from there. Even though I'd never wish these problems on anyone, it is reassuring to know I'm not alone. I may be picking your brain a tad more after I see him :-) Thanks again, Ali [ more ]
Ask away, sure! The 2nd time, they put a balloon type them to keep a tiny bit opened while it healed. It never closed up completely even though you could barely put the tip of a q tip in it. This last time, the colorectal surgeon cleared it out and no balloon. But, it took time to heal as I was older with more health issues. But, once it did, I was so happy. No more pain or discharge. If the surgeon completely redos it, it can take several weeks to fully heal. But each week so much better. [ more ]
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Thanks for the responses. I was thinking there wasn't really a difference between the two. I'm looking into the procedure and I'm trying to get all the information I can so I can make the best decision possible! [ more ]
Mine looks like a tiny, pink bellybutton and I keep it covered with a folded Kleenex or a band-aid that is flesh-tone. I don,t think that in the long run that it really matters because it is always covered and it does not effect function...as long as the tube goes in without pain or discomfort and you are comfortable with it. As for the pouch, they are all the same, it is in fact the valve that differs in the fact that the Bcir ones have a living collar and the k pouches originally didn't... [ more ]
Valve is what is different. I have never seen a continent ileo that didn't have a slit but that is just me! [ more ]
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Please tell your daughter there is hope. Whatever the outcome, things will get better. I chose to get an ileo after failed j-pouch at the age of 30. Many drs wanted me to have more surgery to save the pouch, but I just wanted to be healthy and get on with life. If your daughter can see the ostomy as the way to get healthy and get back to life, and maybe eventually a k pouch maybe that will help her accept it. I've now had my ostomy since 2001 and have had two babies - now 6 1/2 and 4 - have... [ more ]
We've all been there and feel for your daughter. I had my brooke ileo at 21yrs. I put it off for years risking bursting my colon but didn't care. I wasn't ready and that was that. I woke up after surgery and was very sad. I thought I'd never find love. I'm glad she has a supportive boyfriend, I think that is huge. While my emotional state was fragile, I am severely allergic to any adhesive, tape, etc and my skin around the stoma stayed rawed. I was a candidate for a kock pouch and had it... [ more ]
I wish your daughter and your family all the best. It sounds like if she can get a KPouch, it will be a good thing for her. She would be going through a lot right now for sure though. Sounds like she has a great family, which can only help. A well formed ostomy can give you your life back. But a well done Kpouch can give you your life back, and then some. Knowing the best solution/path to take is really tough though.. Ad [ more ]
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Thanks everyone! I am going to see the doctor today to see if I can get some answers. Thanks, Rosie [ more ]
Bacteria Overgrowth is treated with antibiotics, it works wonders for me. night and day if I go off them. [ more ]
Rosie, If it is pouchitis they will probably have to put you on flagyl of another anti biotic like cipro but if it is bacterial overgrowth that won't really help a lot...try going onto a clear fluid diet, NO milk products at all, no sugars either and drink tons of fresh veggies juices, homemade broths and veggies soups and start taking probiotics immediately along with brewer's yeast and see if you start to improve in a couple of days.If you do then you can introduce grilled chicken breast... [ more ]
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Dixie, I found that moving around a bit helps when I cannot find the right direction or am overful...Twisting and turning a bit or standing and bending forward and back..then I try to reintroduce the tube...could take a few tries...I also, in extreme emergencies lay on my back on the floor, raise my legs (a leg lift) over my head and try to lift up my hips or lift my legs up onto the bed while laying on the floor..the thing is to lift your hips up to get your pouch to move around a bit..then... [ more ]
Thanks everyone for all the information. I had my surgery November 24th & was intubating just fine until about a month ago. Then I started having problems inserting my tube & it was then that I realized my valve was moving around. I'm on my second Kock pouch & my first valve didn't move at all & I never had problems inserting my tube. My first Kock pouch fell off my intestional wall. Dr. Cohen was unable to repair it & it was at that point he took out the first Kock pouch... [ more ]
Vanessa, I said valve redo...not pouch. Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
If 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 ]
Yes, they can be diagnosed by a CT scan. The lack of experienced K pouch surgeons is a problem in the USA too. [ more ]
Thank 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 ]
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Oh 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 ]
The 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 ]
What made your two J-pouches fail??? [ more ]
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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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