sorry that i can't answer your question of how long it takes to get an appointment at CC.  my experience with appointments and surgery scheduling was very efficient, but i made my own appointments, rather than going through doctors' referrals.  that was possible because my part B for medicare insurance allows me to make my own appointments and not rely on a referral--the very reason why i purchased that insurance.

despite CC being an enormous 'medical-industrial complex', i pleasantly found it to be very personalized and efficient.  i was only seen in the CR surgery division.  everybody says to see dr. bo shen.  given your long journey and many set-backs along the way, you deserve to see the best.  am so sorry that so many things have gone wrong with the j.

i just got rid of a 16 year old J, which never worked properly, and have a K pouch. so far so good, except i'm having a very difficult time with recovery.

as for SIBO, which i also have, but is not active right now because food wipes through the system at an amazing pace, i controlled it with the lowFODMAP diet.  it helps one learn their food restrictions and can manage the SIBO without meds.  it also had some effect on my j pouch functioning.

good luck and please post back as to your actions and results.  it is helpful for others to know.  janet

I am getting ready to head down to Cleveland Clinic tonight for tests tomorrow in addition to appointments with Dr. Shen and Dr. Dietz. I got my J pouch in Michigan 5 years ago after an emergency colectomy due to toxic megacolon. We've given it a lot of time due to the shaky start and had several additional hospitalizations and surgeries as well, but it has never functioned well. I finally went to the Clinic last year to find out I had chronic antibiotic dependent pouchitis and a rectal prolapse. I've since done physical therapy, changed diet, and more meds and continue to feel and function poorly. So I when back for a pouch scope and check-up 2 weeks ago -- Dr. Shen said the pouch and cuff are enlarged and enflamed and I need a surgical consult in addition to an MRI for a fissure. I've been reading JLH's posts recently (thank you for sharing!) as I may need to consider a K pouch. So tonight I drive down to Cleveland again.. All that to say, it sounds like you should get to Cleveland or Mayo ASAP! When you've run out of options locally, they're pretty much a jpoucher's best options.

A couple tips re CC:

You can start with Dr. Shen as he is the main GI doc for jpouchers (not a surgeon) and he will call in whoever is needed -- CC docs actually talk to each other and seem to work better together than at most hospitals. You may also want to ask for Dr.Shen's opinion on whether he would recommend someone else based on your complications. I would question starting your appointment hunt with Dr. Dietz or one of the other GI surgeons when you have so many different issues and no known surgical solution. 

CC is very familiar with patients travelling from out of town and with working around tight schedules. However they will also tell you Dr. Shen doesn't have open appointments for months. So if you are really serious about getting in sooner (and it sounds like you should be with your current condition) you or your doc will need to ask to talk to his assistant and explain the seriousness of your situation. For such a big institution, they really do try to keep a personal touch and have always been helpful. Be prepared to send down your medical records. Also be prepared for CC docs to run all of their own tests -- they are not being cocky, they just know this GI business better than most and will not make serious medical recommendations based on possibly faulty information.

And here's something else I haven't tried, but someone else comment if you have -- if you get any sicker, maybe you could show up in the ER at CC and get yourself admitted? You would get to see a lot of doctors, for all your complications, a lot quicker that way.

I am not one of those people who would normally travel out of my area for medical care, as I have access to great hospitals and doctors in Metro-Detroit -- I go down to CC because I am out of options and they are experts in this field. I sincerly hope you can get there, get some answers, and get some help. Best wishes and God bless!

jenjen--  Wow, you scored an appointment with Shen!!  Please tell me what he is like.  Hope appt goes well.

Dietz was my surgeon for the K pouch, and as far as I've been told it went very well.  My recovery is terrible and frustrating.  The ostomy nurses do call back and have been helpful, and concerned.  This is besides the point.

Dietz is the only doc there that does Ks

Even with having 'outside plumbing' I am so happy with the K!!  In eight days I return to CC to have the cathera removed and I'll start on

Joan--  Yes, showing up at emergency is one tactic, although I would try to get an appointment before I tried that as you will get more selective docs.

I agree that you should start with a non-surgeon.  In my experience, the surgeons are focused on surgery and not the healing of a J or K, unless there is a surgical problem.  They certainly do not talk about diet, that's for certain!!  They are a different breed (personal experience there too!)

Also agree with Jenjen's assessment of how the CC docs work as a team, including the ostomy nurses, which as simply amazingly dedicated and supportive.  If you have the wherewithall to pull off CC, please try it.  Has been a good experience for me.  

Good luck to both of you and keep posting.  Both trying situations, and that affects your entire life.  been there....  janet

Shen is on same floor and wing of Cleveland Clinic as most of the colorectal surgeons. They are a shout away..

Thanks everyone for your input. I seem to be at a standstill and quite frustrated. I had my last test ordered by my GI doc on Nov 18th and he was supposed to get back to me after that and we would make a decision on where I would go from there but he was very much leaning toward sending me to the CC. He said he had run out of ideas as to what is causing my problems. He thinks the J pouch is functioning fine and that is why he scoped and scanned me elsewhere but I still cannot digest things properly. Lots of bloating, gas, urgency, you know the drill. I called his office last week and a nurse said the last CT looked OK to her. Not really what I wanted to hear. I asked if the dr. saw it and she said she wasn't sure but we would discuss it at my appt on Dec 10th. Well that appt was made as I left my last appt just in case I was going to continue seeing him and not be referred to CC as it is extremely difficult to get in to see him on short notice. I expected to hear from his office by phone before then. I called again this week and now the nurse (different nurse) says they have not even received the radiologist's report from the CT yet!! From the 18th of November!! I guess the first nurse just wanted to get me off the phone. So on Wed I was told I would hear from his office as soon as  he saw the report.  I feel like I am just resigned to suffering with these symptoms, managing them as I have been and who knows when I will see someone who offers me any real hope of a change in my life. Normal is so far back in my rear view mirror. It looks like I will get through one more holiday season with barely eating, faking it around people that I feel better than I really do. My daughter is due to have our first grandchild in the first half of January and back in the summer when this new GI started doing some new tests I had a lot of hope that he would find that one thing that had been overlooked that would solve my problem and I would start digesting food more normally and feeling better but as the months went by and he gave me new meds and said come back in 6 weeks, my hope was fading. I know you have to give meds time to work but I just saw the time passing and nothing happening. He did make the decision in Sept when I bottomed out at 83 pounds that I needed a PICC line and was put on TPN. It worked, I gained weight and feel a little stronger, but that didn't solve the problem. Anyway now I am just venting, sorry, but I am just realizing that I will not be the healthy person I thought I would be by the time this baby is born. I was hoping that if I was going to the CC if would be before our grandchild was born and maybe some progress was made in figuring out my GI system. Hoping I hear something soon, until then I feel like I am just stuck.  

My sister, father, and I all have j pouches - we've had them what seems like forever - since the mid 1980s.  My sister had some struggles about 5 years back - it was tough.  She lives in Philly - she went to CC and LOVED it. It isn't like they instantly solved her problems, but she eventually got so much better.  Her problem was idiopathic dangerously low iron counts.  This went on and on - and of course, she was scared she was dying.  Fast forward to now - she's doing great.  They never did figure out exactly why it happened, but now she rarely gets transfusions, she's a runner, mom of 3, and her two kids will have j pouches done at Cleveland Clinic.  What she loves is the level of care there - she says she's never experienced anything like it.  She'd never go anywhere else again.  I forget the name of her doctor - but there are several who are great and are on the cutting edge of dealing with issues that other doctors can't seem to solve. I hope they help you!

joanm

how frustrating!!!  we are our own advocates--autoimmune diseases are not of the 'level' of cancer, where the patient's every whim is attended to--and then to be slapped in the face with contradictory info is unacceptable.  how can we make informed decisions if we don't have the data?  please don't resign to the symptoms.  keep up the fight.  and of course few docs call back on weekend.

no doubt to many on this forum i sound like a late night informational about SIBO and the benefits of diet.  so here it is again: the lowFODMAP diet might be difficult for some to get on, but it turned my life around.  lots of info on it, plus monash u. has an app that is invaluable.  good luck, janet

Janet - I will look up lowFODMAP diet - I need to try something new as I'm struggling with my almost 30 year old pouch! Thanks for replying.

look at kate scarlata's web pages as well as monash u  jlh

I thought I would update my situation as I have an appt at the Cleveland Clinic on January 5th. My GI doc here made it, I had no input as to the date or the doc, it is with Dr. Michael Valente. I looked him up and he is a colorectal surgeon. I thought they may send me to GI to start out and let the doc there figure out what I needed but like I said it was all out of my hands. I got all of my records from my two surgeries, colon removal and J-pouch, and the take down, and all the CTs, X-rays, tests, anything they did to me both in patient and out patient related to these procedures. Having had doctor's offices telling me they are faxing records to doctor's and they never arrive, or they disappear somewhere on their way, I feel much more confident carrying this envelope with my surgical notes in a manila envelope and a disc with 15 different tests on it. I also know that I was sent to Vanderbilt for my ulcerative colitis years ago and even when the missing records were located Vanderbilt all but shrugged their shoulders at them and wanted to do their own scopes, etc... Can anyone give me an idea of what to expect when I show up there for my first appt? I was told I would receive a packet of information from the CC about their location and hotels, etc.. but so far have not received it. I called my GI's office today and left a message for the nurse telling her that as this being a holiday week and then it will be New Years weekend and we will have to leave here to drive up there on Monday January 4th. I would like to get everything squared away as soon as possible. Obviously I have a combination of anxiety and relief that perhaps this will ultimately lead to an answer to my problems and a return to a normal life, but to add to my stress, my daughter is due to have our first grandchild on January 12th!! She wants me there and I would love to be there, they live in Nashville. I have visions of me sitting in Cleveland in a hospital gown drinking barium for a CT and her calling me saying she has gone into labor and there will be no way I will be able to get there for the birth. I know everyone tells me there are too many things out of my control so I should just stop dwelling on it

Anyone have an estimate of how many days I might be there for an initial evaluation? My GI doc said it could be 4 days, so that would be that whole week. I just have no idea what to expect. He did say any patient that he has sent there has always been very satisfied with there care. Here's hoping.   Joan

joan

good that you have all the reports and such with you.  yes, that stuff gets lost in the system, but it also shows that you are organized and advocating for yourself.

when i went to cc i had made my own appointment w dietz as he is the doc who does k pouchs.  i don't know if you had a specific request, such as pouchitis or j pouch revision.  if so, you might want to contact others on this site for suggestions for your specific problem and then contact cc yourself.  i can't imagine that they would mind changing the doc or the date.  or, did your gi doc know this doctor or think he was the best for your specific problem?  can you ask him why he chose valante?  

i got my answer right then and there, but it was whether they would do a k pouch.  he told me to think about it for a day, but i set the surgical date that day.  and i'm 5 weeks out of surgery.

good luck and keep us posted please.  janet

 Glad you got in - CC saved my sister's life.  We have 3 pouches in the family for FAP. No one could figure out what was wrong with hers - so many problems, also losing blood and no one could figure out why.   This was about 3 years ago - guess what - she pushed and pushed and got in, and they fixed it.  Fast.  She had to fly there, etc. - worth all of it. She is doing super well.  She's had pouch about 29 years.  Good luck and let us know how you do.  I just want you to have hope  - for us this was a miracle.  Now, she plans to send her kids (2 already diagnosed with FAP) - to have all their surgeries done there. She has never experienced the quality and coordination of care anywhere else - and she has been to top hospitals.  She often says, "why all hospitals are not run this way is ridiculous."  And, it really is - not sure why/how we Americans have been so duped by so much sub standard care.  We pay more than anyone else. I now pharma, insurance, for profit hospitals, etc. etc. are all to blame - not sure why we have not been able as a country to say, "NO MORE".  The greedy are so powerful.  It makes me so furious.  So happy you got into CC!  It is the best!

Hi Joanm, I had my first consultation this summer with a GI surgeon, and it was a great experience. They are wonderful there! My first appointment was about 2 hours. I would suggest you have your current doc now call the CC doc to give him an update on your history and current issue. Then bring along all your records and questions. I also suggest you make an appt with a CC GI doc as well, not just the surgeon, while there same week. The Surgeon and GI doc will work closely to figure out a plan, and everyone will be on same page. In my case, the first thing they wanted to do was a pouchoscopy, so be prepared for that. Know you are in good hands there! Good luck!! 

Oh I forgot, I never received a package ahead of time on location/hotels. I just called and spoke to a representative and browsed their website. I stayed at the Hilton doubletree, it was great experience and walking distance/shuttle available too. 

I stayed at Glidden house and loved it. Fantastic breakfast   Ask for cc rate. Jh

So happy to hear that you are heading to CC! But not sure I understand how it will go in your situation...or how your doctor knows you will be there 4 days but have no other appointments scheduled? Like, did he ask to have you admitted? When I go, I make all my own doctor and testing appointments ahead of time as they cannot pull off many of the outpatient tests a poucher needs at the drop of a hat. I don't know anything about your particular Doctor, but you'll be at the right hospital, so hopefully you'll get some answers! I hope you can get more concrete info from your docs (home & CC) about what was sent or requested so your expectations are properly set. Especially with the upcoming baby due!

As for hotels, I always stay at the double tree Tudor arms...it's close, middle price range, they have a shuttle and the rooms are pretty nice with hard floor (not a fan of carpet) and I can sometimes use my husbands points from business travel :-) If I have to colon prep, I ask for a handicap bathroom and have always been accommodated (the regular ones are nice, just really small.) The intercontinental hotels are a little closer but don't provide the service to warrant the high price IMO...but they are connected, so way easier to get back and forth. There are less expensive places the farther you get from the clinic, closer to the city. They also cater to patients and their families and also often have shuttles.

I'll be thinking of you and praying you get the help you need! God bless you & Merry Christmas, *Jennifer

Thanks for all of your replies and info. My GI dr. here made the appt and told me he was sending a letter with a summary of my  condition and problems, what he has done, etc. I had no idea and didn't think to ask if he was scheduling me with a GI or a surgeon. But even though I will be hand carrying the bulk of my surgical records and tests, the dr should have received information about me and why I am there before I arrive. Hopefully. I was only told about the one appt. and since I am not familiar with how things are done there I wouldn't begin to know who to make another appt with or for what. My GI doc said this doc would call in whomever he felt he needed to consult with. I just assumed he knew what he was talking about. I guess I should just look at some hotels myself and make a reservation and not wait for a packet that may never arrive. Thanks everyone.

I agree with JenJen above.  I think typically (I could be wrong, but this is what happened in my case) - the first appt., unless other tests are scheduled, is for an office visit with the doctor to discuss your situation.  Further tests are then scheduled as the doctor then sees fit; whether they can be scheduled at the time you're there is your question.  I'd advise contacting the doctor's PA and tell them your situation.  Be sure they know that  you need to have whatever tests may be needed scheduled for your time there, rather than making another trip back.  The Cleveland Clinic's website contains emails and phone numbers for contacting the doctors offices there - ask for Dr. Valente's physician's assistant.

Best of luck!

We are all thinking of you and may CC help you as much as I has helped so many.  That place is a Godsend for people with our illnesses.  Please keep us posted on your experience and again, hoping for great results for you.  I know it's so anxiety producing....but I really don't think you can get better care and if they don't figure it out right away, they will figure it out and give you the absolute best options to fix things and get your life back.

I know I have not posted about what happened when I went to the CC but things have been a little busy. First of all I re-scheduled my appt from Jan 5 til the 18th as it was looking like my daughter was going to have her baby early and I was right in doing so as she gave birth on Jan 5th!! We were able to be with her and I would have been going crazy if I was sitting in Cleveland knowing she was in the hospital in Nashville about to have a baby. So that was exciting we now have a grand daughter. Then my appt on the 18th went well, was seen by two surgeons, they really did look over all the records that had been sent by my GI doc and poured through my operative notes asking me questions and entering info into the computer. Then the two of them conferred and decided that they needed three more tests in order to really evaluate my pouch and that knowing we had traveled a distance, he would have his nurse do what she could to set them up for the next day. She came in, explained what they were, an MRI, a barium enema and one more that I forgot the name of. Then dr Remzi's nurse came in and explained that if they see something abnormal that the next step would be that Dr. Remzi would want to do a pouchoscopy. I have had one of those of course so I knew what to expect, she said it would be done under anesthesia, they would let me know. By the time we got back to the hotel the nurse was calling and had all my tests scheduled starting at 7:30am the next morning!! Yes, they are very efficient. First the MRI, then a test that involved a small tube and balloon inserted into my rectum, then on to the unpleasant barium enema. But done by noon and on our way home! 

I heard back from the nurse two days later that some abnormalities were found. They found an extra sinus pathway near my tailbone with a small amount of fluid. OK, any information anyone can give me on something like this? She said it does not appear that the fluid is infected. Also there is a very acute angle at the very base of the bowel near the rectum that was unusual, I think she said, not sure exactly her words but she said they felt all of this could be contributing to my rectal pain and problems with bowel movements. So now I am scheduled to go back up on March 7th for blood work and an EKG followed by the procedure, the pouchoscopy on the 8th. Hoping for an early time for the scope, but have been told I will not be given the time for that until I am there on the 7th. 

Any words of wisdom of what might be done about that sinus pathway? Ugh! I was glad to hear Dr. Remzi is doing the scope. Having heard his name on hear so often I feel I am in good hands. 

Joan

Unfortunately, most people here have not done well with conservative measures for a sinus. A sinus is like a fistula, but it does not connect with another organ or outside the body. Abscess is the main complication with a sinus. If it is large enough, the stool can enter and exit without festering, so it is not a big problem. But, just it's presence can cause a lot of scar tissue around the pouch, causing functional problems. A number of members here required a pouch reconstruction because of a sinus. Pouchomarx and Knucklehead are two recent ones that come to mind.

The good news is that you are in the best hands for this type of complication.

Jan

P.S. Congrats, Grandma! 

Thank you, Jan for your quick reply. I really didn't know exactly what a sinus was when the nurse said that is what they found, but I asked if it was literally like a sinus cavity in your head, a space, but it should not be there and she said yes. She said they can form at the time of surgery or anytime after. The nurse I spoke to was extremely thorough and patient with my questions and went on to explain kind of the worse case scenario if in fact I would need reconstruction or a total replacement, not sure what the difference would be to me. She said the first step would be that I would be given a temporary ileostomy for possibly up to 6 months to get me healthier and gain some weight. Since going off the TPN the pounds I gained are slowly dropping off. Then the next surgery I guess would be like what was my first surgery when I initially had my colon removed if I got all this correct. He would create or reconstruct my pouch but I would continue to have the ileostomy for a period of time to let everything heal. Then finally the takedown and see how things go this time. She said it is a big commitment but also she was just telling me what might happen. I know she said we wouldn't really know until Dr. Remzi did the scope but I also feel like she must have a sense of what happens when certain things show up on an MRI. I know I have a low quality of life as I am now. My husband and I babysat last weekend for our 3 week old grand daughter and while we loved it, there were times I had to hand her off to him because I had to run to the bathroom. As time goes on and she becomes mobile my limitations will become more of an issue. I know I need to get healthy so I will just see where this leads me. Right now we are trying to pack and get ready for a move (only ten miles away) that will probably be shortly before we head back up to Cleveland. That is stressing me out more than what is ahead with my scope!! I have boxes and bubble wrap all over my house. 

I will have to look for postings from those names you mentioned regarding the sinus and having reconstruction. Thanks again, Jan. I am eager for any info on what I might expect. I was hoping there might be someone who got similar info and found a solution that did not require major surgery. 

Joan

Joan, are they doing a scope, or an "exam under anesthesia"?  I just wanted you to be aware that if it is an EUA, it's pretty much a 5-6 hr. + affair.  They can't tell you the time it will be until the day before the procedure due to complicated scheduling issues.  

If they gave you a number to call the day before to find out the time, call very early, and/or let the surgeon's assistant know now that you would like to get in very early to have it done.  They can't guarantee anything, but it's worth asking for.

Wishing you the best of luck.

Hello, yes I dealt with my sinus for over a few  years.Went back to an ileostomy for over two years. Dr Shen and my surgeon tried to fix it a few times and all failed. It was coming from rear of pouch back into my small bowel. I also ended up with a tip of jpouch leak that gave me a spinal infection. Dr Remzi redid my entire pouch in October. It went very well even though it was a long complex surgery, 8 hours. I was in hospital for 9 days due to some minor complications but I was back to work part time in 4 weeks. I am due back on March 7th for my takedown. The redo was a handsewn with a mucousectomy. I am still having some uncontrolled mucous leakage so hoping I don't have a major incontinence issue once connected. Any questions feel free to ask. good luck