Vacation with an ileostomy

Hi all,

Battling UC and saw a surgeon today. Will hopefully be scheduled next week for a total proctocolectomy with permanent ileostomy.

We have a family Disney vacation planned for this coming February (about 6 months from now). I think it will involve a few days at a few of the parks in Florida then a cruise. I'm not sure of the itinerary as my wife is the planner for this one. But as with any amusement parks there is going to be lots of walking.

I'm sure my question will bring varied responses here but do you think 5-6 months post-surgery is enough recovery for a trip this involved and active? We have the ability to put it off another year which was my initial inclination but I wanted some input from folks here to make sure I'm weighing my options properly. I asked the surgeon today if 6 months post-op would have me feeling normal and functional and he said yes. But of course he also said that I could eat whatever I want coming out of the hospital and I know better than that, too. :) One of my concerns is being on a cruise ship and having something go wrong like a bad stoma blockage or something.

Where did you stand 6 months post-op on this type of surgery? Do you think you could have handled a vacation like this at that time?

Thanks for your feedback!

Brent

So long as you spend the time between now and then healing and improving your strength, you should be just fine. And if you get tired even then, I know the parks offer wheelchairs and other mobility devices. The important thing right now is to get through with your surgery and then start to build yourself back up. You'll find you have more energy with the bag than not. I'm not even a month into my recovery and I'm already running around like I never had surgery.

I also like to think that your family will pace themselves to match you. :)

Thanks, notsosicklygirl.

Yeah, it is fast. Before he came in to talk I told my wife I was very concerned after seeing how busy the office was that if he was willing to do the surgery that it would take a long time to get scheduled. We were referred to this surgeon by a family friend whose father had surgery done. She is an RN and teaches nursing (specifically Wound & Ostomy Nursing) at the local community college so we very much trusted her opinion on this.

After talking with us the surgeon saw how much research I'd done on what to expect and how ready I was to have the surgery and said that he just needed to confirm with my GI doc that I'm not some fruit loop bouncing from doctor to doctor, that this was the logical next step to my treatment, and he should be able to get me in quickly. At some point in the conversation I mentioned that I was at the point to where if he couldn't do it I would find a surgeon who would. He said he was in the reserves and was being called up to active duty in Afghanistan later this month so if he could squeeze me in Monday before he left he would...and if he couldn't he would get another surgeon in his practice to do it. He brought in the other surgeon and we met him briefly. He said that if he couldn't give me the proper amount of post-surgical care he himself liked to give due to his time constraints then he would have a colleague handle the procedure. I liked him. He was straight forward. So are we. At this point it became a business transaction and he wants the business for his practice. :)

He answered all of our questions and went over the various risks inherent in the procedure. He said it would be a 5-10 day stay as he doesn't like this surgery done laproscopically. He made sense with his answers and wasn't evasive or put off by our questions like many docs can be.

We stopped by the hospital's "Hospitality House" where family of patients can stay during things like this at a reasonable cost and figured out what we needed to do there for my wife ($28 a night...great deal). And the doc is supposed to contact me by noon Wed to give me a surgery time for next week. I'm super pleased with today's events. I hope everything pans out for next week.

Thanks for the info, notsosicklygirl, and for the work you do on the forum. All of the info I've read on HealingWell has been invaluable. It's great to feel pretty confident in what your talking about with doctors and to know what to expect and when to fuss because your not getting the care you need. :)

Brent

Haha I hope you do!
I think even if you aren't 100% at the time of the vacation, you'll feel better than you have in so long & the Disney magic will make you feel 110%!
I found that planning things for my first trip helped calm any nerves that I may have had. We didn't have to have a plan like you would in Disney World, but I knew what restaurants we were going to so I could look at the menus in advance & just make sure I could eat things on the menu. When I got there I realised that I didn't need to do it, but it just gave me that bit more confidence before travelling.
You'll have the best time!!

I second the emphasis on a lot of walking. You'll be beat the first trip or two, but then you'll really start to see improvement. I'll be taking my first long walk since my surgery this weekend; looking forward to it!

13 weeks after my first emergency surgery, we went to Frankfurt for five days and then Paris for a week. We walked, and walked, and walked. I never felt so good in my life. Then in February (3 months later) we went to the Dominican Republic for two weeks and had the trip of a lifetime!!!

Go, plan, have fun! If you need to rest a day so be it! Lounging by the pool is awesome too!!!

Enjoy your vacation!

Susan/; You're almost over the recovery hump, have faith! Soon you'll be reporting equal and better success and then WE'LL have to catch up to you! :D

Well, in a hotel across from the hospital and have finished up (hopefully) the bowel prep. Surgery is scheduled at 7:30 tomorrow morn but I need to be at hospital at 5:15.

Wish me luck! :)

Good luck today Excuse
Laramom, good to hear 1 year later your living your life. I've been thinking a lot about this since I had my surgery 4 week ago and going thru this tiring recovery.

Post Edited (susans53) : 8/17/2015 8:43:15 AM (GMT-6)

notsosicklygirl said...
Hope you recover quickly :) Congrats on kicking UC in the butt.

My next surgery is early and I have to be at the hospital ridiculously early too. I don't know how I will do it!

To be honest, I am doing so well with my ileostomy I have questioned whether it makes sense to go through with all this surgery but i guess everyone wonders that.

Please check in when you can.

Ask your surgeon if you can be admitted the night before or be given a later time. My original admission time was 7am. Told my surgeon I had nobody to give me a lift, the buses wouldn't be running that early and I couldn't afford a taxi. Got the time moved to 11am, but later on my surgeon decided to move the operation forward by a week (no idea why). My new instructions were to go into hospital the day before. With absolutely brilliant timing, that was also the weekend a stomach bug was running round the ward. If I'd gone in a week later, I'd have avoided it.

As for the surgery, yes, I wondered the same thing. It's such an individual decision, I don't have any advice. On the whole I think I'm happier for having gone for it, but it's not something I'll be able to properly judge until next year I reckon. It may sound like a titchy thing, but one thing I really like is being able to sleep properly on my stomach again. It actually makes a real difference to me.

@EMINTP - Best of luck with your surgery today! If you've had it already, I hope all went well.

ExcuseMe - best of luck with your surgery! I hope it went well - first step in getting your life back!


NCOT & NSSG - I sleep on my stomach! Have never had any issues with it. I do seem to always wake up on my back though, with the full bag on my tummy, so I think I just roll over in my sleep as my bag fills. It did take me a couple of months to feel comfortable enough to do it.