I can get it in the stoma, I just can't find the valve. I have tried a Medena, Weber and Judd, Marlen....no luck. It has now been 1 1/2 days without emptying. I just went through a 21 day catheter leave in. This has never happened like this before. I'm not vomiting yet and I'm not eating, only drinking water and decaf tea. This time is different, my valve is shut tight, no gas or leakage of any kind. I am going from ice to heat on my stomach. I am wondering if this is a twist or kink to the valve....or irritated so badly I can't find it. My Kock Pouch would have been 36 years old in May with no problems. I am trying to get the catheter in every couple of hours but I'm afraid I'm irritating it worse. This is the first time I've ever been afraid I won't get the catheter through the valve to empty my pouch. Needed to vent....as I think I'm still in shockmode over this. If I go to the ER and get a NG tube and IV, what good does that do to empty my pouch? I can't keep going on like this for very long, and I know it. I have Humana Insurance and they don't even know I have a Kock Pouch....they don't do anything with Kock Pouches in Wisconsin. I am a patient of Mayo Clinic in MN, but they no longer do Kock Pouches, I don't know if they do valve revisions. This is very stressful and I don't know what will happen.
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I am also from Wisconsin and have had a BCIR (similar to a K pouch) for one year. On a few occasions, I have had a little difficulty getting the catheter into the valve, but nothing like your situation. When this occurs, I withdraw the catheter (I always use the Marlen 30 Fr with the blunt tip), coat it with lots of lube and try again while RELAXING my abdominal muscles. Try inserting using different body positions (sitting, lying down, etc.). If this does not work, you need to be seen ASAP by a gastroenterologist before there is damage to your pouch from overexpansion. What I have just described is practical information from a fellow poucher as I am not a medical professional.
The following excerpt from the Quality Life Association website (www.qla-ostomy.org) provides more authoritative information:
INABILITY TO CATHETERIZE
A patient may on occasion be unable to insert their intubation catheter. This results in a functional bowel obstruction. Various size catheters, from the usual 30Fr silicone continent ileostomy catheter to Foley catheters from 28Fr – 24Fr and smaller, can be tried, but the intestinal waste will not drain well through a small catheter. If completely unable to insert a catheter, 2 options exist: Fluoroscopy with a Radiologist introducing a catheter over a flexible guide wire or small catheter, or Endoscopy of the pouch by a Gastroenterologist (this does not require anesthesia or sedation in most patients) to see the channel that leads from the stoma to the pouch and to then insert a catheter.
My gastroenterologist in Wausau did a routine endoscopy of my pouch in December and had no problem getting in. I was awake for the entire procedure. PM me if you would like his contact information. GI’s in Madison or Milwaukee might also be able to do it, as well as those at Mayo. After this immediate problem is resolved, you may need to be seen by a surgeon who specializes in K pouches.
I wish you the best and please let us know how things turn out.
Bill
The following excerpt from the Quality Life Association website (www.qla-ostomy.org) provides more authoritative information:
INABILITY TO CATHETERIZE
A patient may on occasion be unable to insert their intubation catheter. This results in a functional bowel obstruction. Various size catheters, from the usual 30Fr silicone continent ileostomy catheter to Foley catheters from 28Fr – 24Fr and smaller, can be tried, but the intestinal waste will not drain well through a small catheter. If completely unable to insert a catheter, 2 options exist: Fluoroscopy with a Radiologist introducing a catheter over a flexible guide wire or small catheter, or Endoscopy of the pouch by a Gastroenterologist (this does not require anesthesia or sedation in most patients) to see the channel that leads from the stoma to the pouch and to then insert a catheter.
My gastroenterologist in Wausau did a routine endoscopy of my pouch in December and had no problem getting in. I was awake for the entire procedure. PM me if you would like his contact information. GI’s in Madison or Milwaukee might also be able to do it, as well as those at Mayo. After this immediate problem is resolved, you may need to be seen by a surgeon who specializes in K pouches.
I wish you the best and please let us know how things turn out.
Bill
I went through a problem about 2 years ago. I had my pouch about 36 or 37 years at the time and had my original surgery done at the Mayo Clinic in Rodchester. They originally thought my problem was that scaring had formed over the opening to my pouch and that was why I could not intubate. It actually turned out that my opening had gotten too small to insert a catheter. They went in and dialated the opening and it has worked well since. My doctor is Dr. Beart and he might have worked on you as he arrived at Mayo a little after my surgery in 1975. Dr. Beart is great, but he practices in Glendale , CA. Hopefully, you have a catheter in by now and I would leave it in until you find a doctor who can help you. I also wish you the very best. I have been in your shoes and it is very scarey.
I was taken by ambulance to the Mayo Clinic and spent 4 days in the hospital there. Dr. Bender got a catheter in with great trouble. The end of my valve is inflamed and bent over. I have to go back in 2 weeks for a check up to see if she can get my catheter in, that's if the inflammation is down and nothing else is wrong. So hopefully, this will all turn out ok for me. Thank heavens I stopped eating. I can't even eat anything but blenderized low residue foods that are able to drink out of a cup or bowl. So I am praying this straightens out with a smaller catheter and rest and no pressure on the valve. The inserted catheter is hooked up a bag and I have to put 20 ozs. of water in every 4 hours. So that's all I know right now. I plan on being an advocate for the Kock Pouch at Mayo. So please feel free to contact Corectal Surgeons at the Mayo Clinic in Rochester, MN....they operate at the Methodist Hospital. We need to get it out there that this is a good operation and is still being done around the world. Thank you.
Mayo Clinic General Phone Number 1-507-284-2511 and ask for the Colorectal Department and request each surgeon be given a message or ask to talk to each nurse for each surgeon to advocate for the operation the Kock Pouch to be done at the Mayo Clinic in Rochester, MN:
Rochester, MN Colorectal Surgeons
Mayo Clinic General Phone Number 1-507-284-2511 and ask for the Colorectal Department and request each surgeon be given a message or ask to talk to each nurse for each surgeon to advocate for the operation the Kock Pouch to be done at the Mayo Clinic in Rochester, MN:
Rochester, MN Colorectal Surgeons
Thank you, I agree, they are a world class Hospital and should know how to do the Kock Pouch. I was at St. Marys, if I was at Methodist, I would like to hear the colorectal surgeons say why they aren't fixing Kock Pouches. They put it in at the Mayo and I think they need to keep up on it. The Kock Pouch is not dieing out and will always be around. So I plan to be an Advocate for the Kock Pouch to raise awareness that it is being done still and alot of J-pouchers would and have gone to the Kock Pouch.
Jasmine, I am glad you survived your brutal week. I hope your next exam gives you great news.
I definitely think Mayo has a responsibility to support the Kpouch community. They and Dr. Beahrs brought the procedure to the U.S.. They should not leave all of their patients without a support system.
I definitely think Mayo has a responsibility to support the Kpouch community. They and Dr. Beahrs brought the procedure to the U.S.. They should not leave all of their patients without a support system.
I feel they are responsible too. One of the best, if not the best Hospital in the world. Yes, they need to take care of their patients that they did a procedure on. Dr. Beahrs would be very upset. I need to talk to Dr. Tremaine, he is the Specialty Doctor in GI. In 2001, I was told they did repairs on the Kock Pouches they created. The Kock Pouch is NOT fading out, like I was told at St. Marys.....he wasn't a doctor, he was taking the interns or students around each day, but that is what he told me. Then I started naming off all the places they do the Kock Pouch....I was not happy!!!
I have had my Koch Pouch surgery for 31 years and until just recently I am having issues inserting my catheter. Today was the worst but my 2 hours of anxiety is nothing compared to 2 days of pain and frustration that I read someone has had. The best blog that finally worked was to heat the catheter in boiling water so that you can manipulate the tube through the opening. It worked and saved me from the alternative of going to the ER and everyone NOT knowing what to do with me!
lagoona beach: If you are beginning to have lots of trouble intubating, I would get checked out by a kpouch doctor. I started having trouble and I did not get it checked out until it was a real problem and that was a mistake.
They got in with contrast and the media showed up on a big screen to see where they were and were to go. A scope would not have worked. My valve end is inflamed badly and bent over....the bending over is why it wouldn't go in. Now to find out why it is bent. I had it so inflamed I'm sure from trying to get the catheter in. I think it wouldn't go in because of the bend, it was like hitting a wall and the catheter would bend back on itself. This was an emergency that needed a Kock Pouch Doctor and their expertise, Dr. Bender has dealt with Kock Pouches, she was there when they did them.
I've just had a similar issue with my Koch pouch (after more than 35 years) and have had a catheter (inserted by by GI) in 24/7 for the past month. I live in Germany where the Koch pouch is uncommon but found a surgeon in Köln that does the procedure. He said it was not uncommon to have these issues with the older pouches (he has seen several). How were your problems resolved Jasmine 2 and Lagoonbeach? Your posts are 3 years old so hopefully all is now well.
My kpouch valve has slipped twice and I have had it since 2015. I also had a catheter in and wore an osteomy bag until I could see my surgeon. So far both slippages needed a valve redo which as you may know is surgical & 4-6 weeks of recovery. I love my kpouch but Dr. Dietz said I am a 'slipper' ... so my valve may slip again (both slips were caused by ?, but they both came off the abdominal wall). I hope you can get it resolved soon! Thinking of you...Kara
So far so good! 3 irrigations with the catheter going in like a hot knlfe in Butter! The inflammation has healed and I am using a new catheter that the surgeon recommended - this is the first one I've found that is one is available in Germany! Fingers crossed for continued success!
I've had a small problem on occasion not able to intubate. Probably nothing like what you're having. It usually occurs when I don't empty the pouch right away. I put extra lubrication on and then I take a deep breath and slowly exhale. I may do this several times. I try my very best to relax. I think stressing doesn't help and tenses the muscles. Fortunately this seems to work for me. The best. Mary
of course there can be valve probs, but if it isn't that then i concur: relax, breath slowly and lots of lub. another trick is to stand up and lean in. if still not working, take a break and put the catheter in the freezer for 20 min.
I was going to post this exact topic when I came across this one. Firstly I hope that everyone here that has posted has come closer to resolving the issues they are being challenged with. Now I need to ask others here if while in the event of not being able to get your catheter to go in correctly (I have had this challenge as well), did you sometimes feel like you may have scraped part of the inside causing some blood? I have had this happen when to my surprise (and concern) I had somehow caused the cath to fold over and in gently removing it could see it was not correct and though stressed out I was careful to remove it. I am now trying to use some other lubricants such as Olive Oil and Mineral Oil. (Doctors idea). I had continued with the KY but after 1 successful week, 2 days ago I experienced the inability to get my cath in and sure enough I saw some blood (not much), and it seems to be when my BCIR is full, maybe waking up and gas has built up or this type of situation. I suppose I am not asking for answers but maybe just to see if others have experienced this as well. I will be having a scope in a month or so and my surgeon will be giving the local surgeon the info that he wants taken down during the viewing. I wish I lived in a State where there was a qualified BCIR Surgeon but Mine is in California and I trust him 100 percent.. He created this recent BCIR just 2 years ago replacing a 20 year old Kock Pouch that was failing in the valve (incontinent), and other issues were found with it after they got into my abdomen in which I am so grateful I was in good hands (literally). So, Having this BCIR was/is new in that it works much better in many ways. I have to be more conscientious of when I eat and then how soon I sleep. And I admit that after all the issues I had towards the end of the life of the first pouch I am still sometimes self conscious about using my cath when away from home. I am hoping that I have not hurt myself (I have not seen blood after any of these issues) only at the moment. And of course I am wanting to make sure that I resolve this issue so I a not having the difficulty in using catheter above the simple relaxation and being patient type of situations.
Hi 4ever,
Well, what you are describing sounds like your valve is turning in a slightly different direction and your catheter may not be upward depending on how full it is or what I have been doing (yoga, pilates...hanging upside down...) so I keep 3 different types of catheter in each of my kits...
I have the typical curved one that used to be my go-to cath but now seems to get hooked on the side of my valve occasionally (the flute-holes hook on something and cause a couple of drops of bleeding...nothing serious but not recommended on a regular basis...it could eventually cause erosion or ulcers).
The 32 strait is great most of the time, I keep a 30 or 28 in my kits as well for those difficult days...The older catheters become hardened and I keep them around as long as I can (after a while they crack and leak), they tend to not 'buckle' at the end when I have difficulty pushing through.
I use oils as lube most of the time now (although they contribute to the hardening of the catheter according to the manufacturers) testing different kinds...I buy them in tiny spray bottles so that I can just squirt a drop or 2 at the cath...jojoba is a bit thick (and I am not sure I like the odour) so it plugs up the spray bottle but I find that carrot oil and avocado are very healing and are neutral in odor...olive works just fine too...you can recycle old lube bottles (wash them out well with soap and water before using) and fill them with your favorite oil.
Hope that something here helps you.
Sharon
I now wear my catheter 24/7, I ended up going back to the Mayo Clinic around 5 times in 2014 to get my catheter in. I can't have surgery because I am highly allergic to adhesive, which is why I had the Kock Pouch done in the first place. I can't take a chance of a slipped valve or a leaking valve, which at this time, I have no leakage. So I am content with my situation the way it is. I change my catheter about once a month, because they get so hard. Thank heavens, so far, I've gotten it back in. This is my new life with my Kock Pouch. I have accepted it. I pray you are all doing well.
Jasmine, I'm glad you found a solution. Amazing what we will accept as a new normal, eh? Whatever gets us through the day is the right thing.
Jan 
Yes years of the catheter problem.
Times I have gone back to advice from brilliant GP. after my son was born the stoma kept came right through externally to the surface. mega frightening.
This was result of muscle weekness from my sons birth.
Anyway she taught me to push the stoma back until muscles got stronger.
How clever was she?
If my valve does jam I cane push it back into place myself. As she taught me
I can gently manipilate the valve open by my smallest finger. This should enable the opening of the valve to be located. after this no problem. I believe the catheters are are pulling the valve through as we take them out.
In over 40 years I have only been admitted to hospital once with valve problems and this was from far too much lifting with house move.
I suggest anyway should discuss this with stoma nurse. As stoma nurse here in Scarborough said it makes sense as my finger is only doing the same as the catheter would do. The difference is, I can locate just direction the valve is in.
Please discuss this method first with health professional. anyway it works for me.
Patricia Walker posted:Yes years of the catheter problem.
Times I have gone back to advice from brilliant GP. after my son was born the stoma kept came right through externally to the surface. mega frightening.
This was result of muscle weekness from my sons birth.
Anyway she taught me to push the stoma back until muscles got stronger.
How clever was she?
If my valve does jam I cane push it back into place myself. As she taught me
I can gently manipilate the valve open by my smallest finger. This should enable the opening of the valve to be located. after this no problem. I believe the catheters are are pulling the valve through as we take them out.
In over 40 years I have only been admitted to hospital once with valve problems and this was from far too much lifting with house move.
I suggest anyway should discuss this with stoma nurse. As stoma nurse here in Scarborough said it makes sense as my finger is only doing the same as the catheter would do. The difference is, I can locate just direction the valve is in.
Please discuss this method first with health professional. anyway it works for me.
Patricia,
Are you saying that you stick your finger into your stomach and you can feel the valve?
That is how my surgeon used to test the valve...And it isn't into my stomach, it is just into the valve...it may sound bizarre or ucky but it isn't, just part of the new normal for us k pouchers.
We find solutions that would astound rocket scientists!
Don't worry, most of this is rare and not something that you should have to worry about.
Sharon
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 home and getting a permanent ostomy. These past couple weeks have been extremely tough.
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 to take your body and mind quite a bit of time to get used to this new plumbing, wrap your head around all the new stuff that you have to do (intubate, irrigate...) so stop worrying...unless there is a real problem.
Severe and sharp pain may indicate that something is wrong but general achy pain or waves of pain may be normal and part of the healing process. Things will 'pull', feel tight but that is the normal stuff. Pain is there to tell you that you are doing something wrong, to slow down, breath and take your time. You cannot rush this process.
I did mine at 18 when I was part of the human trial in Canada and no one except 12 other people had one (well, not all 12 were still around back then)...even my surgeon didn't want to do it...but it has been 38yrs and I do not regret my decision...even when things went sideways. My only regret is that people do not talk about it enough, do it enough and spread the word on what a wonderful solution this can be.
Make lists, ask questions, don't be afraid to appear stupid...there are no rule books for this one...you are allowed to be scared. But it will get better. I promise.
Sharon
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!!