Traveling for surgery?

Maybe I'm spoiled because I live in Chicago with access to great doctor/surgeon options but I need help understanding the concept of traveling to have surgery. I have a failed Jpouch and after 6 surgeries I am considering trying to convert to a Kpouch before resigning to a permanent colostomy. However, the surgeon at Northwestern is referring me to Cleveland. I'm still wwaiting to hear from my surgeon at U of C but I suspect I might get the same answer. I can't believe there isn't anyone in the area who can help me. So my question is, what are the logistics around traveling to have surgery?  How many times do you have to travel for pre-op appointments? How long do you stay after surgery?  Can you get on a plane afterwards?  Where does your family stay? What about follow-up appointments?  What happens if there is a complication?  I'd hate to have to get a permanent colostomy just based on where I live but I'm nervous about the concept of traveling for surgery. I can't wrap my head around it. 

Original Post

Traveling some distance was not a concern for me when my j pouch had to go.  I strongly did not want the bag and was fortunate to contact Dr. Ernest Rehnke in Florida and get a BCIR (similar to a k pouch).  I live in northern Wisconsin and travel to Tampa involved a 5 hour drive to Milwaukee and a flight to Tampa with a plane change in Atlanta.  The trip home after surgery took 12 hours and I experienced no problems.

I forwarded my medical records to Dr. R for review and his staff took care of getting insurance approval.  I had a brief appointment with the surgeon on Monday, was admitted on Tuesday and had surgery on Wednesday.  The hospital stay was 21 days and I was completely ready for the long trip home and caring for myself.  A family member or friend can stay in the room with you (on a pull-out bed) and get free meals.  After returning home, you call back weekly to report your progress and get answers to any concerns you have.  Most patients do well in their recovery and do not have to return to Florida for follow-up appointments.  There is a lot of information available on their website: www.bcir.com.  Please feel free to contact me with a PM with any questions you have.

Bill

I have the K pouch. My Surgeon is 80 miles away which is almost a 2 hour drive. I was in the hospital for several weeks to be sure all was ok before being released. I make the trek to see him once per year.

The doctor advised me to empty the pouch at least 6 times per day. And I need to drink 10 to 12 cups of liquid per day. I did fly on a plane after the surgery but it was about a year later. Even with those doctor recommendations I did not experience any problems with traveling on a plane. Good luck to you. Mary

BillV posted:

Traveling some distance was not a concern for me when my j pouch had to go.  I strongly did not want the bag and was fortunate to contact Dr. Ernest Rehnke in Florida and get a BCIR (similar to a k pouch).  I live in northern Wisconsin and travel to Tampa involved a 5 hour drive to Milwaukee and a flight to Tampa with a plane change in Atlanta.  The trip home after surgery took 12 hours and I experienced no problems.

I forwarded my medical records to Dr. R for review and his staff took care of getting insurance approval.  I had a brief appointment with the surgeon on Monday, was admitted on Tuesday and had surgery on Wednesday.  The hospital stay was 21 days and I was completely ready for the long trip home and caring for myself.  A family member or friend can stay in the room with you (on a pull-out bed) and get free meals.  After returning home, you call back weekly to report your progress and get answers to any concerns you have.  Most patients do well in their recovery and do not have to return to Florida for follow-up appointments.  There is a lot of information available on their website: www.bcir.com.  Please feel free to contact me with a PM with any questions you have.

Bill

I've done some research on the BCIR but didn't really consider it for a couple reasons. First, I've read more negative than positive reviews about it. Now that could be because there aren't a lot of patients with one and the successful folks are out enjoying their lives not posting their experiences. Secondly, I imagined that there aren't a lot of doctors who know about a BCIR. So if there is a complication, I won't be able to get help locally. I've had complications with each of my previous 6 surgeries that landed me in the ER or rush admit from the clinic so I am not expecting my next one to be drama-free. However, I have family in Tampa and so maybe I should take a second look. Thanks for sharing your story. 

When I did my research for a presentation I made at the Quality Life Association annual conference last year, I was not able to get actual counts on the number of people with BCIR’s and K pouches.  My educated guess is at least 4,000 with BCIR’s and 15,000 with K pouches.  The success rate for both of these procedures is over 90%.  It’s true that some people have complications, but that is also true of any major surgery.  Although there are not many doctors who do BCIR or K pouch surgery, a local doctor can contact your surgeon for treatment recommendations.  It is my belief that the quality of life benefits of the BCIR far outweighed the chance that I would experience complications.  These message boards are visited mostly by folks who are experiencing complications with their procedure.  The majority of people with good results are out enjoying life and rarely visit these boards.  I encourage you to contact the BCIR program at www.bcir.com and request an information packet that contains a list of over 300 people living in 40 states with BCIR’s who you can contact about their experiences. 

Bill

BillV posted:

When I did my research for a presentation I made at the Quality Life Association annual conference last year, I was not able to get actual counts on the number of people with BCIR’s and K pouches.  My educated guess is at least 4,000 with BCIR’s and 15,000 with K pouches.  The success rate for both of these procedures is over 90%.  It’s true that some people have complications, but that is also true of any major surgery.  Although there are not many doctors who do BCIR or K pouch surgery, a local doctor can contact your surgeon for treatment recommendations.  It is my belief that the quality of life benefits of the BCIR far outweighed the chance that I would experience complications.  These message boards are visited mostly by folks who are experiencing complications with their procedure.  The majority of people with good results are out enjoying life and rarely visit these boards.  I encourage you to contact the BCIR program at www.bcir.com and request an information packet that contains a list of over 300 people living in 40 states with BCIR’s who you can contact about their experiences. 

Bill

I'll request a packet but the BCIR website says patients with Crohn's aren't candidates. 

I seem to be an old hack at this...

I lived in Toronto and traveled to N.C Duke U to have Gracillis muscle flap surgery twice (they used both legs)...the first was sort of terrifying (and painful as heck) but the second was horrific...both ended up failures. My Canadian health insurance covered both trips, family to accompany me and my whole hospital and post-op stay (6 weeks each time).

Once I moved to Paris I found myself hanging out on a limb...no one knew what a  kpouch was and no one would touch me (not counting the other diseases etc) plus I didn't speak the language...so I would pop over to London every 6 weeks, by bus.

Seems that I do that a lot because in the end I had to fly 'home' to Toronto due to k pouch complications more than once...

I travel a lot, the bottom line is to plan well, pack well and make endless lists of what you need, want and are afraid of ...Ask lots of questions, do not be afraid to repeat them if you are not getting the answers that you need and request supplies galore to take home with you just in case.

Every time that they would irrigate my pouch they would use a disposable 60cc syringe, then throw it out, I would scramble to recover it...ditto for the 'clean' blue pads that they would throw out every time, k dishes, and just about everything else that was disposable...I also asked for extras and they were very generous...I watched them do various treatments on me, took copious notes and made them watch me intubate, irrigate etc before I would allow them to discharge me.

If you are afraid of forgetting stuff that they tell you, record them! Then listen again later.

Hope that this helps

Sharon

shavon

 i'm not clear about a couple concerns. Has A G.I. doctor said you are a good candidate for a k pouch?   if so, is your concern about traveling relative to having the surgery away from your home town or traveling in general after the surgery?

I live in Boston, where one would might assume such surgery would be available, however I needed to go to Cleveland clinic.  this was in 2015 and Dr. Dietz did the surgery. As you're aware he has since transferred over to University Hospital. I would highly recommend him for the surgery and can safely assume he has developed an excellent support staff, in particular  Stoma nurses.   I went to Cleveland three times, first to discuss the surgery with him, then for the surgery, and then four weeks after the surgery to have the catheter removed. I traveled by myself and was 68 at the time. No problems. The last trip I did there and back in one day, which was a bit too much for me in hindsight. I now see Dr. Kiran  in NYC and will have surgery  in December to repair a hernia adjacent to the valve.

 as for traveling with a K pouch I have had some challenging times, but it hasn't stopped me. In the summer of 2016 I spent a month in China, on my own,  and traveled to some outposts where I could've only hoped for an out house!  and at that some of the out houses I didn't encounter were pretty wild.    squatter toilets can also be challenging. Earlier this year I traveled to  Myanmar and Thailand, again on my own. My biggest problem is I get dehydrated on planes and have subsequently ended up in hospital. Hopefully I have that resolved and I think I'm the only one in this support group that has as much problem with dehydration and sodium/electrolyte balances. But the short gut can make it more difficult  

hope this is helpful info for you in making your decision.  what helped me a lot, in fact the absolute most, was to read and reread every post on the K pouch Korner.   there is a wealth of information there.  Keep us posted, Janet

 

Thanks for all of the feedback. I traveled to Cleveland last week to meet with Dr Dietz at UH Cleveland. The flight wasn't bad at all - only an hour. I used Air BnB for the first time to help lower the cost of the trip. The nurses helped me feel much better about having surgery away from home. Apparently most of his patients are from out of town so they are good at making accommodations. I'm having surgery next month after this Stelara gets out of my system a bit. I'm in the process of planning my next 3 trips there for pre-surgery appointments, surgery, and post-surgery appointment. This is getting expensive but I hope it's worth it.

Add Reply

Likes (0)
Copyright © 2015 The J-Pouch Group. All rights reserved.
×
×
×
×