Aqx99 wrote:It is quite a change when you have a stoma. I have a temporary ileostomy and it took me a while to accept it. The first month or so, I cried every time I changed my pouch. It was also frustrating at first, trying to get the right system set up. It's good that they sent you home with learning materials and a practice model. That should help. My mantra the entire time I have had this ileostomy has been to remind myself that it is helping to save my life. Any time I feel down about it, when it decides to erupt right as I start a pouch change, etc. I just take a moment and think of what could be if I had not had the surgery. You are stronger than you think, you will make it through this and come out even stronger on the other side. I would like to suggest that you check into talking with an oncology counselor. This is a major change in your life and it might help to talk with someone trained to help people through cancer treatment and the effects it has on the body. I have been seeing the oncology counselor at my cancer center for several months and she has helped me immensely.
I found the stoma quite challenging for two months (so it's still somewhat challenging). My hospital did the following which helped a lot:
- Preop meeting one week before surgery: the WOC nurse measured me and showed me the products and talked about them in general. Way too much information to absorb in one setting.
- WOC nurse came in the day after surgery and went over it again. That helped me retain a bit more. I had some help changing it the day after surgery as well and then I took it from there.
- Four days after surgery, a floor nurse showed me how to change the bag and sent me home with a package of 9 wafers, 9 bags, ostomy paste, barrier wipes and templates. I did not feel confident at all with this. The WOC nurse made an appointment for ten days after discharge but it was move to three weeks later. I didn't realize the implications of this until the second meeting. In the second meeting, she showed me a better system. If that had been three weeks ago, things would have been a lot easier.
Some notes off the top of my head:
- It took me several times before I got more efficient at changing the bag and fear of changing the bag meant that I left it on for five days. This resulted in leaks and damaged and painful skin.
- Product discovery is challenging because I just wanted to keep doing what I had done (or the WOC nurse had done) before. I also have had problems ordering and seeing the company follow through. Fortunately I have one order and about 6 weeks of stuff. I'm still waiting for my second order though.
- There is so much to deal with after surgery that the illeostomy is just one additional thing to worry about.
- Coloplast sent me a travel bag with samples and I put it to good use on a trip. I haven't had to change the bag yet - but will - for the first time, away from home.
- It helps a ton to have a spouse help change the bag.
- Handicapped bathrooms are great.
- Information about how to change specific systems are hard to find and often don't have all of the details. I spent a lot of time looking for videos or directions on the web and it wasn't optimal. The best demonstration is with a WOC nurse.
- I had visiting nurses for a week but they discontinue them after return to work. I returned to work two weeks after surgery. The visiting nurses didn't really understand ostomies. I asked them to order supplies for me stating what I had and she ordered Colostomy supplies for me instead of illeostomy supplies. So I had to return the Colostomy stuff and figure out how to order the Illeostomy supplies. Fortunately I know how to do it now. I've had problems ordering the second round and I wanted it done three weeks ago and have to call again to get a progress report. The time of year (holidays), weather (big snowstorm in the east) and shipping delays don't help.
But I'm getting better and better at dealing with it with help from folks here.