Dr. Bo Shen

Good luck to you. I'm in Maine too, I've only had my pouch since the end of November 2013. I hope you get some good advice. Maybe you can call his office and inquire.
Katie

A fellow Mainer! Hooray. What area are you in?

I hope all goes well and you find the answers you need.

I just saw him Wednesday. When I had a problem in the past he cut open a sinus during the scope. So if you're having a scope there's a chance he may do something. Good luck.

The Doubletree is right near his office and has a CC rate. It's very nice and used to be cheaper than the on campus hotels. Not the Doubletree downtown, but right next to the CC.

Is your appointment for an office appointment with him? Do you have a scope appointment? I would recommend calling his office and requesting that both be scheduled - for either the same day or else on consecutive days. He may want to do blood work and other tests as well.

First time I went, I only had an office appt. He asked if I could come back the following week for a scope, but I had to be back at work, so he kindly squeezed me in for a scope the next day.

Be prepared for a wait! He takes his time with his patients, so there will no doubt be a (long) wait. Take your pertinent medical records, such as scope/path results, any recent bloodwork, doctor reports, etc. He will spend a lot of time going over these in the clinical appt. I'd recommend taking a small recorder and ask his permission to record (he does not mind) - he is not always easy to understand as he has a strong accent.

Whichever hotel you choose, be sure to ask if there's a CC rate.

I was a Remzi and Shen patient throughout all the steps and complication processes for years. For me, Shen was not helpful. I liked him the first visit because he seemed confident and had several ideas of attack to share. After that, countless long trips to Cleveland, he sort of treated me like a number and didn't listen well to my problems and was really short with me. I think this was because we weren't making progress. I've heard a lot of people beating pouch leaks/sinuses though, so don't let this discourage you. Surely, I was just on eof the unlucky ones

As for the trip, I'm afraid you will most likely need to budget for multiple trips there until the problem is resolved. It's a process where he may cut/drain it, clean it, put in a drain, etc. but you'll need to go back regularly to see how it's progressing. For the first trip though, you might as well definitely give them a call and ask for a scope to be scheduled the next day so that you aren't stuck there a long time waiting for a spot to open, or need to fly back a week later. If they do not comply, just get serious with him that you need him to squeeze you in while you're in town. They've made these exceptions for me before since i'm 1000 miles away.

I believe the cheaper hotel right next to the clinic is called The Guesthouse (owned by double tree). It's nothing to get excited about and will cost around $100 per night, but you wont need a car. After going many times, I found it more affordable to just get a cheap hotel somewhere else in CLE and make the drive to the appointments each day with a cheap rental car. The Guesthouse is a good choice the first time though since you'll be right there. I know it sucks paying for the trip and hotel, etc. but just remind yourself that you can't put a price on your health and it's money well spent if you can get things worked out and back to a normal life. Plus, you can deduct travel and hotel expenses for medical reasons on your taxes

Quick final point of advice... if you do have to make multiple trips to Cleveland until your pouch issue is resolved, try not to have a mindset of "i can't enjoy my life until these trips are done with and i'm fixed" because then you could always just be waiting for something before you can "get going" with life. This is a mistake I made. I kept thinking.. "ok, 6 more months" or "3 more visits" etc. but really, I should have just tried to live my life in between those visits. I know this is easier said than done if you feel like crap, but at least just take the mindset of this being your life now, and not just when trips to Cleveland are over.

you should let office know you are traveling from very far away..(you will not be the first) and maybe they can tell you the best way to approach your particular problem as to length of stay,what time to allot and so on..do this now before your scheduled time so you can allow for what is necessary..

Someone posted a while back that the Guesthouse is closed: http://j-pouch.org/eve/forums/...1071921/m/7257073336.

I'd like to add that as far as deducting the trip on your taxes you need to be itemizing your deductions. Medical expenses for travel are grouped in with medical expenses which go on the top of Schedule A, Itemized Deductions and are limited by a percentage of your AGI, or adjusted gross income. It was 7% and has or is going up. So it was the first 7% or whatever% of your expenses times your AGI will not be deductible and only the amount over that will be. If you are paying for your insurance premiums pretax it is pretty hard to have enough expenses to get over this hurdle.

IMO Generally most don't get to deduct expenses on Sch A unless they are in nursing homes or have high expenses to pay out of pocket because they can't pay them using a health savings account or using some other tax sheltered plan.

trust me, some of us who have had non-stop hell dealing with this have gone well over the 7% time and time again. I've exhausted my out-of-pocket maximum for insurance 4 straight years. Quite frankly, it's the only piece of information that matters on my policy because I know i'll meet and exceed the deductible and then max out each year. Countless surgeries, ERs, hospital stays, procedures, office visits, prescriptions, supplies, etc. add up quickly when things aren't going well. I think this year I can say I will be keeping expenses down bc there is finallllly some improvement/stability.

sorry nola.

Thank you all so much for your responses! I'm going to call and change my appointment so I can hopefully be seen on consecutive days. Right now, my appt is for a Friday at 4. So I'll reschedule it at the advice of the kind people who have responded.

It's funny but I also have the mindset of just a few more months... Few more, few more... You are so right that I need to change that thinking.

Again, I so appreciate the responses!

The Doubletree Tudor Arms was the hotel, not the guesthouse. If you map it, it's two blocks from When's building. Two years ago they offered a CC rate if you call them directly. It was about $100 a night and very nice. Very easy walk.

Shen's not When's.

The Comfort Inn is right next to the clinic and only 75$ with the clinic special. I saw Shen and ended up having surgery with Remzi. I had a sinus when Remzi went in I had 2 leaks and an abscess on my backbone. he had to remove my pouch and form a new one. I am 4 weeks out and feeling much better. I was plagued with c diff before. Now I know why. Everything is going good so far. If you ever get sent to Dr. Garafolo run away far far away and smack whoever referred him.

JDShaw, How many surgeries did you end up having to accomplish all of this? It sounds like Dr. Remzi went in and found the problem and did it all in one surgery - which I'm thinking probably didn't happen.

I'm curious as I think I might have need pouch repair surgery but won't know until my pouchscope next month.

TammyKathleen, I hope this works out well for you as I remember you having problems before you moved back to Maine and that seems like it was several years ago.

i hung out with Dr.Shen today for awhile.. Trying to get him out of that old Hyundai he drives and into an Audi..lol

I enjoyed Dr. Shen very much. It's my opinion that he can sometimes be a bit over-optimistic on what he can do with his sinusotomy procedure. He was ultimately confident he'd fix my "leak." I sure felt great after that visit! Then the first procedure, he said there you go. All done, fixed up. See you in six months. But that wasn't the case. Then another procedure that should fix it up then we may need to do it multiple times. Then my local surgeon recommended a scope with Dr. Remzi and Dr. Shen present and Dr. Remzi suggested a pouch revision. While I think Dr. Shen's procedure CAN and DOES work for some people, my suggestion would be to temper your expectations just a tad against his (nice and refreshing) enthusiasm.

i have had 4-5 needle/knife procedures with Shen to open up my sinus. During a recent consult with him and my surgeon to discuss a new area of concern, the tip of j leak, they did an in office scope and the sinus is opened up to the point of where Shen is happy with it and no more procedures. End of August im going in for a new procedure he will be trying with one of his colleagues to close the leak with whats called, Apollo endo stitch. Never used for this type of leak, if can close it i will be out the same day and can hook my jpouch back up shortly after that. If cant close it, my surgeon will be there to do surgery to staple the leak. 5 days in hospital and a few weeks off work, then go back in 6 weeks to see if it worked. * fingers sooooooo crossed *** Shen can produce magic one more time.

I hope it all works Pouchomarx and you are hooked back up soon