Preparing for ileostomy surgery - need advice on supplies and post-op care

I'm having debulking surgery for ovarian cancer in a few weeks and need to prepare for a very likely ileostomy.

I don't think the one-time visit with a stoma nurse pre-op is going to cut it. I want to be prepared before I go under the knife so I know what kind of food and supplies and incidentals to have on hand when I return from the hospital. From what I gather, I'll get some "lessons" in the hospital and by the handful of visits by the visiting nurse, but I'm not confident this will be enough. Thanks in advance.

Hi Teal, I have had my ileostomy since 1994, a long time. When I got out of the hospital, I went home and ate a lot of bland things. I took my time and ate little bits of what I ate before surgery to see what my system could stand. Eventually, I got to eat everything and anything I want. Nowadays, I eat anything. Any questions, let me know.

Thank you for responding. I'm hoping to have a list of what foods and beverages to have on hand when I return from the hospital as I will be on my own and not able to get out and shop right away.

I am also wondering where and how does one get a WOC nurse? I keep seeing that and don't know how you can "get" one. Is this a private nurse you hire or what?

Hi Teal,

I have a J-pouch now, but I had an ileostomy for eight months last year. I was extremely unprepared as there was a mere week between my official diagnosis and my emergency surgery, with symptoms only being present for about three weeks. My family and I basically turned the stoma nurses away when they tried to prepare me for one prior to surgery, because we were so desperate that drugs would work.

This approach does not work, so I'm glad to see that you're seeking some information. It will be a massive shock. I don't think any amount of preparation will remove the initial shock and the following emotional impact of the ileostomy, so be ready for that. My stoma nurses gave me a printed out checklist of how to change the bag so that I could stick it on the wall of my bathroom when I came home. I didn't actually use it at home, but it was a great comfort, so you could consider that if changing the bag is a concern.

I don't know what the deal is in America, but I had a hospital dietitian visit me and she allowed me to ask questions about what I could and couldn't eat, and both her and the surgeon gave me a checklist with a recommended diet for the first 4-6 weeks post-op, as well as some general foods that cause problems. Basically, eat bland for the first 4-6 weeks was what I was told. White bread, white rice, low fiber, no raw fruit or vegetables. After that time period, it is really a matter of personally trying individual foods to see if they impact you. I found for me that pretty much nothing caused an issue, but I never tried eating popcorn due to also having braces at the time.

The Australian government supplies stoma supplies for free, but I understand that you have to pay in America. I found that the bag that the nurses gave me worked amazingly well for me. It was the Coloplast Sensura Mio. It was a one-piece bag. I pretty much only used the bag and adhesive removal spray. Many people find that barrier wipes are very helpful if you have skin irritation, but I rarely needed them.

You will learn most things through experience, but I also found that this site was fantastic for info, as well as a safe place to vent frustration when I was feeling down. Everyone here has been through it, so help is abundant here.

Best of luck, and I hope your surgery is successful,

Hamish

Hi Teal, since you do have time to prepare for your ileostomy, I would suggest that you Google everything from pouch changes to caring for your ostomy. A wound nurse is helpful, but unless he/she has an ostomy, life with an ostomy is much different. I would also call several of the large suppliers such as Coloplast, Hollister, and Convatec. They will send you welcome kits with all the 'stuff' you will need in the beginning. Usually the kit has a video to preview. Please keep posting your questions too. We are here to help you get through this transition period. Also, please view the www.ostomy.org webpage. It lists support groups in your area and upcoming conferences that are both local, regional, and national. Take care and good luck to you. Sincerely, LadyHope

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Hello Teal, I had my ileostomy done just over a year ago. I saw my stoma nurse in my pre-op, a couple of times during my 3 days at the hospital, and one time, about a month after surgery. They are a great resource while getting used to the life changes involved, or if you need advice for product changes early on, but after some basic training you'll get the hang of it. I know it's a daunting task, but it'll be easier than you think. Lean on us here if need be, this is one of the reasons I've stuck around on the site. I told myself, if I can help anyone else through this, I need to do so.

As LadyHope said, get the ostomy manufacturing companies to send their "care packages", you'll get a lot of good info from them, and somewhat of a selection of products to try out. Also don't be afraid to call the companies for free product samples, most of the time they are more than willing to send you freebies.

I'd stay on the bland, easy-to-digest foods for at least a month, if not a little longer. Take it easy when you do start to go back to a more normal diet, there may be things that you ate before that don't do as well after surgery. The advice I was given was, only one new food at a time, and not too much of it until you know how it affects you.

Good luck with your surgery, and get a hold of someone if you need help!

Sasquatch

Always drink 2x amount of water than you did before. It's so easy to become quickly dehydrated with an ileostomy since the output is mostly liquid at first until your body adjusts.

I would eat bland foods or soft foods in the beginning, but your doctors should go over food suggestions with you.

A WOC nurse was referred to me by the hospital, but everyone and every state is different, especially with your health insurance. I was approved for 7 home visits a month. My insurance paid for the WOC nurse to come to my home and show me everything I needed to know about an ileostomy.

Thanks, everyone. Really do appreciate your postings. Sorry for the delay in writing back, but I have been overwhelmed with a lot of things regarding the cancer, work, etc.

I am getting conflicting info from the docs right now. I'm not always a fast learner and I want as much training from a nurse beforehand as I can. I'd like to know too before surgery what kinds of stuff to have on my to-buy list ... from foods to things like, uh, waterproof sheets or pads in case of accidents. Other stuff I should have on hand? I won't be able to run out to the store right away after surgery and don't want to wait for mail-order stuff. So what would you all say I should have on hand so I don't have to worry about this after coming home from surgery?

I have Googled all over the place, lots of info, but still think personal stories and experiences of just getting through the logistics will help me most.

Thanks and best wishes to everyone here.

Blessings going your way, hope all goes well.