Home To Rehabilitate

Getting home was a shock. All the time I had been in hospital my sitting had been supported.
Due to nearly 18mnths of not sitting up due to extreme pelvic pain, I was now going to learn how tiring and time consuming it was to learn to sit up straight again. Still healing from the surgery meant a 5 minute sit led to 1-2hrs of sleep, and due to my lower back damage it was going to take nearly 3mnths before I could sit up for 30 minutes without totally wearing myself out.


My new urostomy worked well and healed very rapidly. To aid my friendship with this ever moving piece of intestine that had reduced pain levels to near 0 in the pelvis and undoubtedly saved my life, I named it "Polly pop out".


A tummy that now looks like a patchwork quilt with all the previous pelvic surgeries I've had led to some fun finding suitable housing for Polly. I contacted all the stoma bag companies I could find and requested samples of all their suitable dressings. 
A couple had to be removed within an hour of placement, as the adhesive reacted with my skin. Others were rejected on aesthetic grounds: they looked bad on me! Finally I found a bag that I didn't react to, didn't turn into a huge sausage shape when it started filling, and wasn't glaringly obvious if my waistline accidentally revealed itself.


Recovery was well underway, and as energy levels returned to my normal, I was back to pushing myself around in my NHS provided chair. It was like wading through mud, and my urostomy was getting very achy and sore. Time to try support wear! The only thing that helped was a level 3 hernia belt: not a good look for my newly acquired  waistline, and it didn't change the wading through mud strength needed for me to self propel my wheelchair.
I have since managed to obtain support wear that doesn't leave me unable to breath as it comes so high (not good when you need to breathe propelling a chair), or look so chunky I should be a weight lifter. the strong belt I use when I know I am going to be pushing myself around outside. When I asked for this originally, I was told "You don't have a hernia". I said "and pushing a chair around I don't want one thanks". It seems not many manual wheelchair users have stomas.


The next challenge was to apply for a different chair, preferably lighter in weight and without the arms on as they set my arms at a peculiar angle for self propulsion. In this request I got lucky. First I was offered an electric wheelchair; which I declined, as apart from upper body swimming, pushing myself around in my chair is the only exercise I get. the solution they came up with is a dream, and a Ferrari compared to the chair I had. It is lighter in weight, has wheel guards rather than arms. A rubberised covering on the propelling wheel gives better grip, and the shorter wheelbase means I can get round the house easier without taking door frames and wall corners with me. The other brilliant thing is that on a reasonably level surface I can easily keep up with whoever is with me rather than them waiting for me to catch up. Never mind that I am out of action for a few days after such an outing as back pain and weariness get me big time, at least I can with a bit of company to assist on hills or when I get tired I can now have some kind of life outside the house.


All in all this was a huge operation, and the work involved to be fit for it was excruciatingly painful; but the benefits have been huge for me. Polly is now a good friend I couldn't be without, and at 56yrs of age I don't think I need to worry to much about my quilted tum.