I’m on the east coast and not familiar with California dr’s. What about Dr. Shawki at Mayo Clinic in Minnesota?  He is very experienced with internal pouches- he was formerly at Cleveland Clinic.

I don’t know any doctors other than Dr Schiller. Was hoping to find a surgeon in California so I could drive there.

Are you familiar with the QLA (Quality Life Organization) they maintain a list of doctors and surgeons who have some familiarity with internal pouches. There may be a listing for a Dr in California.

nor do I know about CA doctors.  some ideas, however, to share with you.

first check the master list on this site for a doctor that you can get to.  btw, help out by updating with any new info.

second, the longest I ever had a blockage was less than a week.  by day five I'm vomiting along w pain and eliminating only liquids.  is this the case?  if not, how do you know there is still a blockage?

finally, the blockage is in the small bowel (of course) and a regular gi doc should be able to determine what to do.  one time I was conveniently in hospital when a blockage occurred.  prior to X-ray, which determines blockage location, I drank a barium type solution.  it happened to move the blockage along.  however, at that time I had a J pouch and another GI doctor managed the situation.

another thought, especially if blockages are a regular occurrence, which hopefully it is not.  during the K surgery, from the J, dr. Dietz (then at Cleveland clinic, now at university hospital in Cleveland) also removed extensive adhesions on my small intestines.  In the seven years since I went from weekly to very few blockages.  point is, at least in my case, there might be a problem that can be resolved.

keep us posted as the more info the better.  hope you get this resolved asap!  jan

I’ve been to Quality of life site. Dr Cindy k is on the list. When I intubate nothing comes out until I make 2 fists and push inwards and down then I can empty my pouch. Sometimes it feels like 2 squirrels fighting inside. I go in for X-ray tomorrow or Tuesday.

oh my wouldn't that be an interesting X-ray if squirrels popped up?  glad you are getting an xray.  might your doctor consider a consult--hopefully with you included in discussion--with a k pouch specialist?  might problem not be SBO, but perhaps something to do with the pouch?  recall sharon writing about slipped pouch, but don't recall her symptoms.  I always learn from her posts.  one lists  everything that can go wrong.  she's extremely knowledgeable and writes clearly.

Dr. Jonathan Worsey is a colorectal surgeon at Scripps La Jolla hospital in San Diego.  I've undergone some revision surgeries with him , I've had my K-pouch for 49 years and still going strong.  Dr. Worsey has been doing K-pouch revisions for years, initially at the Cleveland Clinic and worked with the former Dr. Launer. He is a top notch surgeon and recently spoke at the QLA.  

Thank you guys for all your help. It’s a little scary now with Dr. Schiller being retired. I never really worried about anything because he has always been there. But now I don’t know.

I think you will find the K pouch medical community to be more informed now than even 10 perhaps 20 years ago. Columbia-Presbyterian in NYC is conducting seminars, at least two specialists have told me they are working with other physicians and in another countries, and we have the K pouch Korner for reference/support. I say this for reassurance as I too am apprehension with change of doctors.  at times it has improved my situation! Look forward to hearing what they find  x-ray.

Did X-rays yesterday and waiting for doctor to call and let me know the results. How many people have the same problem? After I eat something my stomach makes a lot of noise, gurgling and rumbling. I try and eat dinner by 6:00 pm and usually go to bed around 8-9. All the rumbling and gurgling wakes me up at night and makes it hard to sleep. Stomach gets sore and always on the right side.

The gurgling can be a sign of pouchitis.

I’ve been taking cypro and flagel . They don’t seem to be making a difference.Is there a better antibiotic to take?

Well I just called dr. Worsey they won’t speak over the phone or have the results of my X-ray sent to him to look at so have to go there and then maybe for nothing. And he’s retiring very soon. Was told I’d have to go to Cleveland. I’m in northern Nevada.

Since I've seen Dr. Worsey several times for revisions, I just called his office as well after your message.  Dr. Worsey is not retiring for about 4 years.  I don't know of any surgeon, especially one who deals with revisions of k-pouches that doesn't require an on site visit.  I moved back to San Diego after many decades from another state because of this office. If I have to have another revision that's after his retirement, I will go to the Cleveland Clinic, there are several surgeons in the Cleveland area who can do revisions, I've checked them out in the last couple years.  Those of us that have had this procedure are fighting against the clock as to how many docs are learning or choose to work with continent ileostomy patients.  Unless we live in an area where these surgeons are, it does require a lot more expense but for me, I'll do whatever I can to keep my k-pouch.  

Well, X-ray didn’t really show anything. I didn’t think it would, When I talked to dr. Schiller he said it needs to be a ct with contrast. So dr Schiller spoke with my local dr and he ordered a ct with contrast. Had that done on Friday so now I’m waiting for results. Even though dr Schiller is retired he is helping me. If I do need surgery I think I’m going to see Dr. Cindy kin in Palo Alto at Stanford. Has anyone here ever seen her?

was wondering the status.  sorry nothing picked up on the X-ray.  but good dr. schiller is helping out and the next step is ct.  keep at it.  not always easy to advocate for oneself when not feeling well.  hope this group can help out.  i think you are on the right track.  jan

Yes thanks to dr Schiller he’s one in a million. My biggest complaint is that my dr and several others no nothing about my surgery’s or have even heard about this type of surgery and yet they won’t listen to me and think they know better.

If is very frustrating that they won’t take the time to even attempt to educate themselves. It’s mass production in these practices- no desire to spend extra time on a single patient outcome. Except of course  those few exceptional doctors that continue to assist us- they are very special for sure.

i agree w that frustration.  doctor's lack of interest makes self-advocating even more difficult.  remember: you always know your body better than the doctor does.  

here is a suggestion, which perhaps might be a nice way to hint that your doctor needs more info when treating you and when talking w dr. schiller.  columbia has held two symposiums on k-pouch.  here is the link to what i believe is the first one:

WEBINAR September 17, 2021: Ileal Pouch Disorders Symposium

WEBINAR September 18, 2021: Ileal Pouch Disorders Symposium

maybe send to your doctor?  having no ideas what your doctor is like or your relationship with him/her, i don't know if this is helpful or not.  just a thought.  jan

Good resources. Columbia put them on in 2022 also. Interesting to hear the doctors discuss continent ileostomies.

May I ask what is a K pouch? Is it the same as a J pouch?

In short. a K (Kock Pouch) is a continent internal reservoir with an internal valve, all fashioned from the last couple of feet of the small intestine. A plastic catheter is inserted into a flat to the skin stoma opening, through the valve, and into the internal pouch to facilitate draining waste a few times a day. There are a small number of surgeons who still offer this alternative to the conventional Brooke Ileostomy which requires an external appliance. I’ve had a K pouch since 1981.

Well  Dr Schiller called and said that the CTscan didn’t really show anything. He’s forwarded all my info to Dr Cindy Kin at Stanford in Palo Alto. He said I need to be scoped. I have a question to any one what do you take to slow down the gut? I’ve been taking Imodium but it’s not working any longer. A long time ago they used to give me codine to slow down my gut.

I don’t take anything to slow down. How often do you evacuate? How often do you irrigate ?

A scope sounds like an excellent idea. The doctor can take biopsies to determine if there’s any disease such as pouchitis. Thanks for the update. Hope you’re feeling better.

I empty my pouch 4-5 times a day. I have never irrigated.

if it is convenient to do so, can you try emptying more often, say 7-9 times and irrigate for say half of the times?  

there are various techniques to irrigate.  i use a large size enema bottle --empty it of the solution and then use tap water.   squeeze about half of the water into catheter, empty, let air into the bottle and then you can squeeze the balance of the water into the catheter.   a search on this site will come up with other irrigation techniques.  just a suggestion because can't think of anything else. jan

Thanks Jan I’ll give it try

I don't know of drs in California, sorry. I had a blockage several years ago. I called the dr and he recommended to use meat tenderizer when I flushed. That really didn't help much for me. I went to the hospital to have a scope of the pouch. When they inserted the contrast agent the pressure released and it was all good. The dr indicated that sometimes happens with the contract agent. I drink a lot of water 10-12 cups per day and empty and flush my k pouch 6 to 8 times per day as instructed by my dr.

I do use an enema bottle to irrigate 99.9% of the times. (once in awhile I kinda forget). Then after I irrigate I use the water left in the bottle to rinse out the catheter. Then when I'm home I wash the catheter outside with soap and hot water (inside and out). I don't go to public bathrooms to empty my k pouch a lot so I'm not as proficient with that procedure.

occasionally I use 20% vinegar to clean out the catheter  (be careful with 20%  vinegar I use gloves when I do this.). I let the catheter soak for a bit and then rinse it off.

Yes drs don't seem to be interested in k pouch or gathering information about it.

I wish you abundant luck.

LadyTay-- same experience with blockage dispersing due to the contrast agent.  i prefer to get home to empty, but finally convinced myself that nobody knows what the catheter is for so why worry.  and of course, same experience with doctors not dealing with k pouches.  doctors and nurses are interested in looking at it, but just look not learn.

amos--had additional thought on empty/irrigation routine.  (btw, good to hear you are willing to try this.)  this might not be the solution for your problem, although it is a good technique to minimize bacteria lingering in the pouch and subsequently pouchitis.  

trying different things can help during your doctor's appointment.  you can explain the results of the routine, along with your diet and other changes that you made.  all this provides the doctor more information to diagnose.  you know your body better than any doctor can so provide them info on it.

keep us posted!  be well, jan

Yes, I convinced myself since no one would know what a catheter is no problem and the one time I was in a public bathroom cleaning the catheter the other person in the room seemed interested (she kept looking over), that's it. But then I read a post on this site and that person said another person in the bathroom yelled at him/her for cleaning the catheter in the sink. I suppose it's a crap shoot if anyone else in the room might have an idea what a catheter is and what it's used for. I don't know why that person had a problem with cleaning the catheter in the sink.

I'd prefer to wash the catheter in the sink with soap and hot water but you never know. This is why I hate emptying my pouch in a public bathroom and I try to wait until I get home where all my supplies are handy and I can clean the catheter better.

hum, "crap shoot" it is.  just to be certain, i memorized HC toilet locations at places i frequent in boston and portland.  once the person who asked me was a dear woman who cleans the airport restrooms.  i told her i always clean up after myself, which is true.  not sure why, but i feel uncomfortable in both sex bathrooms.  do you?  guess i need to play my 'old age card'.

oh my, this is tangential to amos's urgent problem!  that happens on this site.

Never been to a both sex bathroom but I think it would be a good bet I would feel uncomfortable.

Ok, well Dr Schiller has sent all my records and ct scans to Dr Cindy kin at Stanford in California. Can’t talk to the doctor over the phone unless I’m in California. So would be a 5 hr drive to get to the border just to talk to the dr on the phone .Then schedule a face to face meeting with her and then schedule a pouch scan.   This is so stupid!!!! I just want to schedule to get my pouch scoped and go from there.

First of all, there's no way a recipient is going to know where you're actually calling from if it's from a cell phone that originated from another state.  I've kept my same cell number from another state and use it in CA, yes, every recipient shows my previous state because that's the origin of the number!  If they ask, of course say you're in CA!  It shouldn't be such a big issue to schedule both a consult and another appointment a few days apart under the circumstances.  I understand the need for a face to face but since you're traveling so far, perhaps they'll work with you.  

I’ve called several times. I give up they don’t care!! I told them I live with my daughter in California part time and will use her address was told I have to be in California for them to even talk to me. I asked if I could make an appointment with scoping my pouch a few days after face to face meeting and was told no. Can’t make an appointment until I see the doctor and would be 2-3 weeks after.

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

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.

great to get appointment!