Hi everyone:
As some of you know, I had emergency surgery due to Cdiff in September. At first, I thought I had no large colon left. Then I thought I had just enough for a reconnection as I was told by one of the doctors before I left the hospital. Then I found out through a flex sig that I have 18 cm plus. I told them to stop because I was in pain, but I was happy to hear that I have that much.
In the beginning, I was very depressed and really wondered if my life could keep going like this. I was already born disabled, then acquired more health issues in life. But I always had good bowels. Even with the Cdiff, I had constipation and I thought they were overreacting when they said I needed to go to emergency surgery, that I needed a bag. Needless to say, they did not overreact; I woke up with tubes everywhere. I was on dialysis for three days. My kidneys started working again, but I lost my desire to eat. I went from 142 to 89 pounds. I am back to myself more or less again.
In rehab, everything was much worse because they were not used to someone coming in already born disabled. I had problems with them allowing my power chair there and people telling me to move my body how I couldn't. The food there was bad. I ended up having a friend bring outside food and got stronger. Plus, a machine in rehab called a NuStep got me strong again. It's a sit-down cross trainer, and I highly recommend that for anybody that can get on one after surgery. I came home around Thanksgiving. I believe I started communicating in this group around that time.
I've taken a break over the last few months just trying to do more research but at the same time, pulling back a little bit for my own sanity. In the end, what I've had to come to terms with is that each of us is so different I could research forever but I won't know what will happen to me until it happens. But this group has given me a lot of courage and support from just reading people's posts.
I want to thank in particular Iggy, Just Breathe, Mermaid, Bob, and last but not least, Warrior. You guys make life with the bag more understandable and more of a relatable, accepting experience for me from when I first got on here and I want to say a big thank you. I also want to say thank you in particular to Crappy Colon, Colin Sans Colon, and Caz…to all you guys with no colon and a direct connection—it's because of you guys and the success that you've had that I feel okay to go through this reconnection and I thank you deeply also.
If it doesn't work, it doesn't, but I had to try. I am shocked at how many people don't know about ileostomy care, but know about colostomy care even in hospital settings. Even with colostomy care, the education seems to be not great in many rehab settings. To elaborate on that, I was given a closed bag in rehab and then cut the hole too big and they changed the bag about three times a day after two weeks and got a very bad acid burn. Closed bags are usually for end colostomy people. I wasn't given enough education in the hospital before rehab on my bag. This caused needless pain.
If I get through tomorrow, well, I hope to use this experience to help educate others about ostomate care. Please send good thoughts my way tomorrow morning. I will do my best to update people here. Big hugs to all.
