Mine lay on left side for 5-10 minutes. exercise to get blood away fron pouch area
Mine lay on left side for 5-10 minutes. exercise to get blood away fron pouch area
Also, if the tube kinks at one of the holes, throw that tube away and use a new one. The old tube will just keep kinking in the same place.
When my valve is a pain, I empty my bladder a second or 3rd time, use olive oil on the tube (the older ones are stiff so I use them) and tyr first with a strain one, then a curved...if still I do not succeed then I use the strait one and aim up, to the left, right and finally downward. I have a floppy valve that changes positon and requires a bit of ingenuity to get in there...
Change positions too, standing, sitting, twisting in different directions...
Whatever works today will not work tomorrow...so be patient.
I’m updating this thread because I’m in the midst of an intubation marathon. I’ve been trying to get the cath in for hours. I’ve tried standing, sitting, laying down, heating pad for relaxation, hot shower, different size catheters, inserting a straw inside the Cather to keep it from bender - every trick I know. I’m desperately looking for other tricks to try before I need to go to the ER. Any ideas?
By now I’m sure you have taken care of this problem?
I have this problem frequently, usually caused by gas distortion of the area.
I lube heavy, lie down and roll side too side slowly to move the gas, try to relax muscles and even do pelvic tilts .
May have to reinsert a few times slowly.
But if you get nauseous or begin to vomit, it’s ED visit
Do so hope you are all recovered though
and back to normal 🤗
when on toilet empty the bladder first, then relax. another technique is to stand and lean slightly forward. or try putting the catheter in the freezer for 30 minutes. If you can’t get the catheter in after a certain amount of time – – you figure out what’s best for you – – give up for a while, perhaps freeze catheter, and then go back and give it another try with the empty bladder relax method. lots and lots of lube helps too janet
Thanks! It has been taking hours to get it in - now with lots of blood. I feel like ithe valve has moved. The frozen catheter no longer works - it just hurts. I put one in boiling water and it helped last night but not this morning. The only one that goes in every time is a tiny red rubber one. It’s way too small for anything to come out of it though. I think I need to make an emergency trip to see my surgeon in Cleveland. I might put in the tube attached to a bag for a couple days so I’m not constantly irritating the valve. I’m out of ideas.
I've had occasion to have some difficulty inserting the catheter but those occasions have usually been few and far between. First I always empty my bladder. Anytime I have a problem I usually try to relax by breathing in and releasing the breath slowly. Then I probe around gently until I find the entrance and I use as much lube as possible. Eventually it slides in. I gently insert as far as I can but sometimes I get more resistance so I stop. If the catheter is in some ways, I will flush. Flushing sometimes causes the catheter to slide in further. Sometimes up to the mark. But as long as I can empty any contents I will empty what I can and then slowly remove the catheter. Thank you all for all the suggestions and tips. Have a beautiful day. Mary
I will share my favorite tricks right after reminding us all that if intubation is often very difficult, it might be time to see your surgeon because you might be having a valve problem that needs to be fixed before it progresses any further. I've had my pouch for 16 years; I started having intermittent leaking problems a year ago which got worse and worse -- misdiagnosed by NYC Famous Pouch Surgeon as pouchitis, which does NOT cause leaks. In fact my valve was developing a kink, is now not functional at all (chronic leaking) and the valve will have to be rebuilt (yup, full open-belly surgery). I don't mean to scare anyone but if your intubation problems are frequent and/or you're also experiencing any leaking of gas or liquid or solid waste, see your doctor. My upcoming surgery would have been necessary anyway but probably much easier if I had been correctly diagnosed from the start. I did not have intubation problems at first -- only leakage -- but as the situation progressed, intubation got mighty tricky.
What I do when intubation gets tricky: first, I get generous with the lube. Then I sit up very, very straight, pull in my abdominal muscles (hardening the gut a bit)... and then I press the whole pouch area toward the middle of my belly by pressing into my belly from the right (on a right-side stoma) with the pinky-side of my flattened hand. Sometimes you can feel the catheter heading one way or another if its not going straight in -- in that case, put the catheter in just a little bit, then feel for the valve and push the valve gently toward the middle of your belly before inserting the catheter further. If the catheter is heading left or right, the valve is not straight so you want to press the whole pouch and valve over and that usually straightens it enough to let the catheter enter. And always remember: lube, lube, lube!
SLDRX please explain leaking. I have constant leakage of some sort , even with heavy thick coverage of waterproof a patch, my clothes get soaking wet. Usually clear, but with a bit of actual stool.
Just had scope 2 weeks ago and Dr said valve looked good.
I have a very difficult time with intubation many times a day,have to lie down a lot.Dr says it’s easy when he does it, if course I am lying on the table and the scope is thin.
I am 13 months with K
Please let us know how you are doing and will keep you in my thoughts and prayers.Where will you be having your surgery, if you don’t mind sharing?
Also Shavon , how are you doing?
So happy to have some connections with all you out there. Thank you!!
I am happy for my life and very much appreciate the Drs who do this surgery, they are our lifeline. We owe so much to them.
You all have a great day today
My specific reply to Jan is below -- Jan, please read thru this first.
Leaking is caused by a valve problem. It is when a significant amount of gas or liquid or solid semi-liquid output comes out of the stoma when not intubated. This happened to me starting a year ago, infrequently at first, almost at random, but progressively more frequently and now many times a day. My pouch was before that 100% completely continent for 16 years (except for one period when I was taking SSRI antidepressants, which made her leak and caused terrible pain -- I've posted about that but if anybody needs it let me know, I'll post it again.)
Having mucous come out of the pouch is totally normal and a sign of good health because the intestinal (pouch) tissue should never be dry. Having a little gas or water escape is also considered quite normal. For output to flow out of the stoma -- more than a spoonful -- is not ideal, although my doctor has told me that some people's pouches are never 100% continent and they normally have some "leakage" of small amounts from time to time. As long as the amount and frequency of leakage is tolerable and stable, he tells me, many people just live with it and its not cause for surgery, which always has risks.
In my case, however, the amount and frequency of the leakage kept increasing over the course of a year from small spots of less than half a mL on my Ampatch to where it was 3-to-5 mL at a time coming out at once, then again in another few minutes if I didn't empty her... and that would happen several times a day. I never had a fever or body aches or any of the other signs of pouchitis, and none of the thousand rounds of antibiotics I took for nine months made any difference. The famous pouch surgeon who did the pouchoscopy and gave me that diagnosis said the valve looked fine and he had no problem entering the pouch with the scope; the valve problem was not as severe then (a year ago) and my lying down must have straightened it out enough that he couldn't tell there was a problem. The pathologist's report did NOT indicate pouchitis and I never ran a fever or had body aches. I kept careful records of everything -- looking for patterns -- and the type of food I ate made no difference, but I would ALWAYS leak an hour or two after I'd consumed 6 - 8 ounces of liquid in a short period of time.
I was having progressively more difficulty intubating and the next surgeon I went to was sure it was a valve problem and shocked that my famous surgeon said it was pouchitis. He didn't have enough experience with continent ostomies (and lied about it), so I went to Dr Pokala Ravi Kiran at New York-Presbyterian/Columbia and I'm very very lucky to have found him. He told me after a pouchoscopy, biopsy and CAT scan that I did NOT have pouchitis, that my valve had developed a "kink" -- and that is exactly what it felt like when I was having problems intubating. This can happen with "older" pouches --- many people (but certainly not all) need valve "revisions" after about 15 - 20 years.
My surgery is on October 3rd, 2018 at Columbia Presbyterian Hospital in New York City (thanks for asking, Jan!) and in the meantime I either don't eat during the day at all or have just a little cheese and crackers and no liquids till I get home -- that regimen is just what I've learned from experience at this point.
Jan, I was lucky to have a completely continent pouch, but not all of them are, and I can't tell whether you've always leaked this much or if its a recent thing. It sounds like a lot of leaking, however. If you can accommodate it by emptying and changing covers more frequently (I use Ampatches from Austin Medical, they come in various absorbencies and most insurance covers them) and the amount and frequency are stable -- not getting worse -- it might be something you have to live with. I would suggest that you (1) keep some kind of records to monitor it to see if its stable, (2) try a high-absorbency Ampatch if you haven't already tried them (call Chris there for help selecting) and then a Kendall or similar "island barrier" on top of that if necessary, and (3) if its getting worse and your doctor isn't responding (and tell him my story, too, that the valve problem was not obvious at the first pouchoscopy), get a second opinion from one of the surgeons mentioned on this site or from the QLA site's list https://www.qla-ostomy.org/med...-continent-ostomies/
There are a LOT of quacks out there who will tell you you need surgery who are NOT qualified to diagnose you or operate on you. Don't rush into anything -- I know this is an annoying situation but its not life-threatening. And hopefully some or many of the "tricks" listed here will help you with the intubation problem for now.
Thank you for the info, I do use a.m. patch but, must also use additional, and it is only useful for short times, but I will call them and ask about a more absorbent one. Hopefully my insurance will agree to it. Seems we will have to work forever to cover all this🤨
Also, I have very slow motility issues and have had 2 prior Jpouchs , not lots left to digest with. I have been told to keep increasing liquids and like you said, that is when I can count on a huge amount seeping out.Kind of a darned if you do darned if you don’t.
I am having some testing done in the next few days , maybe they can come up with an answer.
My Surgeon is on the list, but I think you are correct, it’s not always obvious that there is an issue and sometimes things are what they are.
Also what sort of prep can you do for testing like a barium type test? My output is almost always way too thick now.
I sincerely appreciate your help and everyone’s.
Dr Kiran was a lose for CLE and a gain for NYC for sure.
Can I ask, was it difficult to get an appointment with Dr. Kiran? Did you have to wait a long time for an appointment?
No it was not difficult to get an appointment with Dr Kiran, and I was shocked— and very pleased. I saw him within seven days of calling his office. Even more miraculous is that I saw him within fifteen minutes of my appointment time — in contrast to my last surgeon (see below), where the wait was often two months for an appointment and always more than three hours at the office (and nobody ever returned my phone calls or emails, etc etc).
Dr Kiran listened to me attentively, did a pouchosocopy, sent me for a CAT scan and we scheduled surgery as soon as he got the results of the CAT back. Some doctors will sugar-coat things but he is very, very straightforward -- maybe a little more than usual with me because he knows I have a background in medicine -- but I really appreciate cold facts. His staff of ETs and NPs are also very knowledgeable, well organized and accessible. I feel like I'm in good hands with both the surgeon and his staff, and even the pre-surgical testing at Columbia was easy and fast.
When I tried to make an new-patient appointment with Feza Remzi at NYU in early July, they gave me an early September appointment, then a mid-September appointment... then moved it into October — even though I explained that my pouch is leaking very, very badly and getting rapidly worse. I finally got so pissed off that I went looking for another doctor -- and found Dr Kiran.
I will not go into a long story here about why I left Jeffrey Milsom's practice after many years except to say I EMPHATICALLY DO NOT recommend him.
Note that Kiran, Remzi and Milsom are the respective heads of colorectal surgery at NewYork-Presbyterian/Columbia, NYU and Weill Cornell respectively. The contrast is amazing.
Please update us all about your surgery and Dr. Kiran's care; I'm very interested in knowing which NYC K-pouch surgeon might be the best for me if I should have a need in the future. And best wishes for a successful outcome and a quick recovery!
I have researched the K pouch extensively and have found out from individuals who have the K pouch that only Dr Joel Bauer and Dr Ravi Kiran perform the K pouch procedure in NYC and perhaps the North East. The others will not tell you that they do not perform the procedure, will offer to see you, do tests and often will recommend that you have the K pouch removed or to live with your symptoms. It is unclear as to why they do this but a lot of the big name doctors also seem to do this. The same with some of the doctors in Cleveland Clinic, who are trying to learn the procedure since Dr Kiran and Dr Dietz left. I believe that Dr Bauer has either retired or will retire soon, which leaves only Dr Kiran in NYC. Be sure to do your own extensive research and ask to speak with patients with K pouches who had surgery with any surgeon when their office claims the surgeon performs the procedure.
In addition to Dr Kiran and Dr Dietz, there are 2-3 surgeons in California who do the procedure. Some others have also done them but they seem to have performed only a few of these.
Thank you very much, SHIM2000. This is scary and true and worth posting to any other pouch groups anybody knows of.
I too am hearing about surgeons who claim to be able to have extensive experience with building and repairing pouches. They say they're able to do revisions but in fact their game is to REMOVE your pouch — they can claim it was too diseased to save and you'd have a hard time proving otherwise — and they collect a big fat surgical fee without any risk of malpractice. This group includes several prominent surgeons who were trained by the late Victor Fazio at the Cleveland Clinic — Dr Fazio perfected the Kock pouch procedure and remains one of the most revered colorectal surgeons in the world, so its horrifying that his own protégés — among others — would lie to us and destroy our pouches.
Dr Feza Remzi and Dr Jeffery Milsom, two Fazio-trained surgeons who became heads of colorectal surgery departments at NYU and Weill Cornell respectively, are apparently in this category — I've known Dr Milsom for 15 years; he stopped building K-pouches a long time ago and my recent experience with him indicates that he is an out-and-out liar and is not to be trusted in any way, shape or form. Dr Remzi is also not building pouches, and if he can't build them, he isn't capable of repairing them.
Dr Kiran was also trained by Vic Fazio and will perform my valve-fix surgery on October 3rd; he is the head of colorectal surgery at NewYork-Presbyterian /Columbiaworks and has a whole department under him, including Dr. Daniel Feingold, who may also build and fix pouches — they are at (212) 342-1155. I will post a report as soon as I can after surgery.
Dr Bauer is still practicing as of August 2018 but has left Manhattan Surgical Associates and is now at (646) 952-9898.
Dr Daniel Popowich, one of Dr Bauer's ex-partners at Manhattan Surgical Associates, lied to me about having built and fixed pouches. Avoid him.
I agree with SHIM2000's advice to ask the surgeon you're considering for the phone numbers of SEVERAL patients whose pouches he's RECENTLY built and/or repaired. Tell this prospective surgeon what you've read here and if he won't provide references from patients, walk out the door.
Getting back to the original topic of positions to intubate. Most of the time, I have no problem sitting down and intubating. When in a hurry or stressed, it gets harder to intubate and I often struggle (or course that's when you need it the fastest). I had my K_Pouch done by Dr. Fazio and he always recommended laying on your back and bringing your knees up. That works most of the time along with relaxing so that the muscles or tissues in the area aren't tight. That solution makes it challenging sometimes in a public or office setting, but sometimes when you got to go, you got to go. am sure that has been quite a sight to see on the occasions I have been laying on the bathroom floor in a stall.
Just confirming that my surgery to fix slipped K-pouch valve on October 3rd with Dr Kiran in New York went really, really well and that I HIGHLY recommend him and his staff. He is at NewYork-Presbyterian/Columbia University Hospital, (212) 342-1155.
Great news! How long were you in the hospital, if I may ask. And if you don’t mind sharing, for post op, did you have to leave a catheter inserted in the stoma 24x7? How was this done?
Surgery for a slipped valve was on Oct 3rd and went very, very well. The situation was, as Dr Kiran had confirmed with pouchostopy and CAT scan, that the two layers of the valve had slipped apart, disabling the continence of the valve, which is not uncommon with K-pouches after 15-20 years. I had a lot of adhesions as well and Dr Kiran also moved the opening in my abdomen up by about 1.5 inches to stronger abdominal tissue. Six days in the hospital including the day of admission and surgery. Liquid diet for a day, and soft food starting the second day, solid food the day after — Dr Kiran says this was possible because he makes a LOT of tiny stitches to seal the pouch immediately and also because The Princess was usually quick to recover activity. Beware hospital menus: don't eat any binding stuff like bananas or peanut butter or rice; these menus are tailored for other GI patients, not us, and you should drink as much liquid as possible so your output is thin and flows easily into the collection bag because the nurses aren't allowed to flush the tender post-surgical pouch as thoroughly as you normally would. Pain was not severe at any time; oxycodone for the first few days only when needed and gabapentin (which does not slow down gut motility) every 8 hours. A flexible catheter sticks out about four inches from my abdomen and stays in place continually for 3 weeks from date of surgery. (When Dr Fazio first built The Princess, I had to stay cathetered for 6 weeks in order to ensure that the valve would heal perfectly straight.) Home on Oct 9 wearing leg bag, toting night bag and supplies: I can shower but not bathe and every day I change the absorbent pad under the plastic faceplate that holds the catheter in place, all held down by an elastic belt, as you all probably recall from when you had your pouches built. Virtually impossible to put on even very loose pants with this tubing sticking straight out of me; one should prepare in advance for that.
The catheter and incision staples come out next Thursday Oct 25. Dr Kiran treats pouch and valve revisions just as cautiously as when he first builds a pouch, so there may be surgeons who would let you remove the catheter sooner and/or who might use fewer staples but I ain't complaining. His staff of ETs and NPs are great and Dr Kiran deserves every bit of the enormous trust I placed in him.
To get back to the topic of this page: if you are having chronic problems with intubation and/or leakage, especially if you have had your pouch for a while and these intubation and/or leakage problems just started, I would suggest that you see your surgeon to find out whether there is a problem with the valve. Especially if the problem is progressively getting worse, a pouchoscopy and maybe a CAT scan might be in order.
Hi All! So I’m back to give an update. Thanks for all the helpful advice. Intubating is still an ongoing saga for me. I went to Cleveland to get my pouch scoped. I spent more time waiting for my luggage in the airport than seeing the doctor. He didn’t see anything wrong and just told me to intubate more often. I struggle with that for many reasons - but that’s for another strand. I’m able to get a boiled catheter in with varying degrees of difficulty. It hurts most times so much that I get lightheaded. I have a small red rubber tube I use to get gas out and then I can usually fit my 30 fr. in after a while. I’m going to order another size of rubber tubing for those challenging days. I guess this is trial and error and takes time to figure out. I’m trying to be patient...
Could Shavon or somebody tell me what this "boiled" catheter idea is? Valve and pouch tissue can be severely damaged by burns just like any other tissue — warming up the catheter in water that is not hot enough to make you withdraw your hand makes sense, but any hotter than that is not advisable!
Also, Shavon, did you see a surgeon who actually builds pouches (BCIRs or K-pouches)? Sounds like you were not convinced that you were understood or properly cared for. In my experience, you shouldn't be having all that pain — maybe a bit of difficulty every once in a while but not as much as it sounds like you're having.
I'd be happy to make some specific suggestions but I don't want to hijack this forum — feel free to PM me (see the pull-down menu upper right / "private message").
As a person who's considering getting a KP, are these difficulties regular or rare? How often do you have difficulty intubating?
If memory serves when I've had difficulty, it's usually because I was not able to empty the pouch in a timely manner. So if I didn't put off emptying the pouch (within and beyond my control), I probably wouldn't have that problem as much. But I don't do that a lot so the difficulties are few and far between. The difficulties (or the lack of) seems to be in my control. At least for me. Hope this helps. Good luck. Have a peaceful day. M.
The quality of life benefits I get with my BCIR far outweigh the times I have difficulty inserting my catheter. Most times, the catheter slides in easily, but occasionally I need to use more lube, relax more and change the angle of insertion to get it in. Insertion of the catheter is more challenging if the pouch becomes filled tight to its capacity. You will get a feeling of fullness when it is time to empty.
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 painful and zaps my energy. I’m worried that I’d have to leave work if I tried.
Since I’ve had so many surgeries that my surgeon believes that I have an aggravated nervous system. My nerves are very sensitive. When I intubate my pain is in my back or my chest or my neck - nerves firing everywhere. So my situation is not at all normal.
I’m approaching my 1 year anniversary- the timeline I gave myself to either feel normal-ish or figure something else out. Not sure what I’m going to do...
Thanks for all the feedback!