Blockage

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