There is no doubt that being at home instantly brings feeling of comfort and ease. Although my recovery is far from over, home brings leisure with the comfort of my own bed, couch and toilet. First order of business was to wash my hair but since I wasn’t quite strong enough to stand in the shower my mom washed it for me in the kitchen sink.
The idea was that the stoma nurse changed my whole bag right before I was sent home, and scheduled a home care nurse to come a week later, in time to change it again. This week all I had to do was empty it on my own. Since I was wearing one from the hospital, it was transparent in order to be able to see the output. I hated it. There was nothing I could do to get rid of that feeling of being dirty. Even after emptying it, I would attempt to rinse and clean as best as I could but within minutes I felt disgusting again. After the pain in the hospital I seriously considered opting out of the second surgery after about a week with the bag I realize I still want it.
I have been fortunate enough to have a sister and mom off work who stay home and take care of me. I basically transfer from my bed to couch and couch to bed other than the occasional trip to the washroom. Other than that they cater to my needs and I am so so thankful. I can sometimes hear their frustration and their need for a break but I also know they understand and that I would do the same for them.
My Dad works hard during the day and then takes over caregiver duty in the evening even though I think he’s afraid to be alone with me. He also encourages me to walk and get up a little bit more every day, having gone through an intense surgery just over a year ago, and recognizing the importance of keeping the blood moving.
My second day home was the most difficult filled with anxiety and discomfort as I struggled to relax. I felt like all my muscles were tingling and restless as I fought to just settle.
I think this was a combination of the overwhelming feeling of a whole new body and lifestyle but also from sleeping on my back for almost a week and other areas of my body being affected by the surgery.
I only found relief once alone in my bed, uninterrupted from people checking on me, and support from 5 pillows. I was able to peacefully just watch Netflix and kind of take my mind off of everything.
My appetite has definitely come back after a week of only water. Having spent so many months trying to alter my diet in a last ditch effort to minimize inflammation, I attempted to eliminate or at least decrease dairy, gluten and egg. Although I’m sure this helped somewhat it is also extremely difficult to follow and also challenging to pinpoint if it was actually making a difference. If I ate a cupcake and had diarrhea was it sensitivity because of the flour? The milk? The egg? Or just colitis? Or did I just suddenly come down with the flu or food poisoning? Who knows. That’s why this time around I’m going to struggle again finding out again what foods my body is just sensitive to and what foods are okay to eat with the bag. As of right now I’m just trying to get some basic nutrition back in my body and eating whatever is in the house, easiest for my family to make. Once I’m recovered I can start being a bit more diligent with my diet and careful balancing what my body can tolerate and what is healthy. Until then I’m enjoying the ride.
With the comfort of a heating blanket and some pain killers, sleep has come with much more ease. After 2 nights at home my lower back and bum were sore from all the pressure of being in the same position. I attempted to sleep on my side for the first time and it felt heavenly. The next night I attempted the other side and that felt even better.
You don’t realize how necessary being able to move around is when you sleep until you’ve slept only on your back for a week.
Each night I rest a little easier which in turn makes my days more refreshed and mobile.
I received my package from Hollister supplying me with a months worth of ostomy care which is nice to see the opaque bags and products used to assist with living comfortably. I’ve also sent for free samples from Coloplast to test their products and compare which manufacturer I like better. Stay tuned for that blog post.
My person came for a visit bearing more unnecessary but extremely thoughtful gifts, which also help, get me through each day. A cozy blanket to warm up to on the couch with some warm hot chocolate makes the rainy November days a little less gloomy. And she provided a good book to get lost in as well as a journal to start documenting my stream of consciousness.
One day before my nurse came after a warm shower (I also started showering using a chair so I could sit under the hot water without pain or exhaustion) I noticed my bag leaking from under the adhesive barrier (the flange). Thank God my Mom, and only my Mom, was home and could help me scramble to change the whole thing. I attempted to stay calm as I was covered in my own filth and the stoma continued to be active while trying to clean it. Once this whole ordeal was over I felt a little bit refreshed knowing I was clean as well as capable. When my sister came home and asked, “Were you laughing or crying?” I admittedly said, “Crying….just crying.” I got over it pretty quickly though and just sucked it up as the fact that this is life now.
My home care nurse came the next day and said my stoma looked healthy and the bag fit properly which I was a little nervous about but made me feel much more confident. She insisted that if a leak happened again to phone her right away and she would do her best to get over in time to help apply the new one. This was she could check on the skin around the stoma and ensure everything fit properly. She also removed my staples, which wasn’t painful but leaves a gnarly scar. She is kind and knowledgeable and I think I’ll be happy with her.
Every day I feel a little bit stronger and healthier. I’m able to stand up a little bit straighter and walk a little bit further. I already feel the benefits of not having to run to the washroom every 20 minutes and was told the colour in my face is also starting to come back. Home isn’t a building or a shelter but it’s where you feel love and safety, surrounded by your people. And although my own bed is a luxury bonus I feel at home because of my family and visitors. Today I showered standing up and also put on make up for my first outing from the house since I’ve been home. I only appreciate my freedom knowing I have home to retreat to.