Hi,

I had my first surgery done at a hospital about 4 hours away from me. There is a local surgeon where I live, however, he only performs the procedure by completely opening the patient up. Since I wanted to go laparoscopically, I decided to travel. Fortunately, the two surgeons know each other and were willing to work together. The surgeon here actually did my follow-up care as well as my takedown. If I didn't trust the dr locally, I would have traveled back and forth for the follow-up visit and takedown. Anyway, when I left the hospital with my ostomy, it was arranged for me to have a visiting ostomy nurse come to my house each week. Once, she was on vacation and I really needed her. I was able to make an appointment with the ostomy nurse at the hospital without a problem. The ostomy nurse at the far away hospital was also always willing to talk through things, if needed. I did also end up with an abscess after the first surgery and that was dealt with locally. The hospital here requested all records and everything was taken care of. The surgeon who performed my first surgery has also been very willing to chat on the phone, when needed and has also followed up with myself and the surgeon here. Hopefully this has answered some of your questions. Good luck!

I can't add much to this discussion except to say that the concern about proper ostomy care is a legitimate one. When I was at Mount Sinai Medical Center I was completely in awe of the ostomy nurses. When left to my own devices after my hospital discharge, I realized how invaluable these nurses were to me. I am sure CC has great ostomy nurses as well. The aftercare is VERY important and pay close attention to the ostomy training they give you because it is hard to implement, at least it was for me. Good luck-

I had my surgeries from a distant hospital and all was well. You will meet with a social worker prior to your discharge. He or she will arrange for your follow-up care via your insurance company so that when you get home, your ET nurse care is scheduled. You might want to bring this up during your consultation.

Many of us have traveled far to get surgery; this is not that unusual.

Sue

Tiesto,
I traveled back and forth from Paris to Toronto numerous times for surgeries or follow-ups depending on where I was when I needed surgery...I found that the most important thing to do pre and post op/travel was to ask questions and make lists.
No question is too silly or insignificant and writing down the answers assures that you remember what to do, how and when...get samples of things you may need, ask about diet, exercise, request letters or copies of files etc...hook up with a local doc or surgeon and ostomy or aftercare nurse and tell them what you have planned and find out how they function, what their methods are etc and then have your surgical team make sure that they are ok with it (different surgeons, different methods)...
I made some really unfortunate discoveries early on (pre-this site, internet and skype)...my 2nd French surgeon feed me solids 4 days post op and I got a full blown blockage that would not resolve, he had an NG tube in me for 10 days and I was miserable...my Toronto doc never did those things but I just thought that all surgeons followed the same protocol and didn't bother to ask...my first French surgeon did full blown k pouch surgery on me saying that he knew exactly what he was doing but I woke up with an ostomy appliance...only to discover that he didn't know that k pouches need to be intubated and appliances were useless!
If possible have someone with you for the return trip post op...Driving long distances alone, even if you feel great, is not a great idea...you may be more tired and sore than you think...
Sharon

Thanks everyone for this information. Greatly appreciated and helps in making me a bit more comfortable about this. I will definitely be bringing up the distance questions during my consult. And I will have my parents with me during surgery so no driving at all. I expect to be pretty useless for a good few weeks as I recuperate.

I was also planning on staying local in a hotel for a few days to a week in case anything immediate comes up. Going to ask if they recommend this and for how long.

Yup, make sure that you have a local OSTOMY nurse available to you, not just a regular visiting nurse or regular nurse at the hospital. In my experience non WOCNs usually have enough training to deal with an appliance that will be worn by someone who is totally bedridden... They're not able to actually troubleshoot appliances, deal with skin irritation, etc. Don't be satisfied if a regular nurse says they "know" how to deal with ostomies, make sure you have a real WOCN!

How do I arrange for a local ostomy nurse? Sue mentioned a social worker if I go long distance. Would that be something the hospital sets up for me so that when I'm back I'm all good? Or do I have to contact a local hospital or my GI?

The hospital social worker should set up your at-home ET nurse in conjunction with your insurance company.

Sue

Great, thanks Sue.

Hospital social workers, including those at CC, generally set you up with a home nurse, not a specifically trained ostomy nurse. I have found home nurses to be completely useless at dealing with any ostomy issues. And all three of the home nursing companies that various hospital social workers have set me up with had ZERO ostomy nurses on staff.

With that said... cleveland clinic does have a ostomy nurse hotline number. And if you call and leave a msg, you will generally get a call back the same evening, by a very experienced ostomy nurse. They also can look at pictures via email. And they record everything in your file, so if one nurse tells you to try something, the next time you call, the next nurse can see what you tried and didn't work. They have A LOT of ostomy nurses. And every one I have encountered has been extremely helpful.

Also, I would question a CC surgeon working with a local surgeon. I don't think that would go so great. Egos.. and also CC surgeons are extremely busy. What might work, is to have a local GI doctor for post-surgery followup? Also I have found that keeping my local P in the loop is helpful for somewhat "emergent" situations as she is able to get through to CC sometimes better than I can.

Liz is correct. My first in home nurse knew nothing about ostomy care but after my second surgery I asked the social worker to find my an ostomy nurse and she did. Just make sure that the home health company you choose has a certifiedostomy nurse and the will send one.

Mike H

When you leave the CC they will give you a list of phone numbers. I had a small issue and called the number and spoke directly to my surgeon after just a few short minutes. you are choosing the right hospital for this procedure.

Mike H