When I was told I could finally go home, I was so happy, but also terrified. Could I cope at home with the stoma? was I well enough ?what if something went wrong? I wouldn’t be able to ask anyone that moment. I was still extremely thin as you can see from my photo, and my hair was just as thin.
My husband and mum came to fetch me, and I said my goodbyes to the wonderful ward staff who had looked after me for all those weeks.
I had a large bag full of medication and we were on our way. When I walked through our front door and also saw my daughter, I cried, ( my son was away at university, but had seen me a few weeks before).it was very emotional and the strange thing with being so ill and weak for a long while, I realised I couldn’t climb the steps on my own, my husband had to help me. I also found going upstairs was just as bad. I went straight to bed and was so comfy, it was wonderful. Before I left hospital, I had already got used to emptying my bag in the loo. I prefer to sit down and do it, but I know others like to stand too.
I was still in some pain and had been given morphine which helped a lot. I found that the mornings were the worse, and getting out of bed was especially difficult with pain and stretching. My husband had to flush out and empty my rectal drain, so before he went to work I had to get out of bed and stand whilst he did this. On the first morning, I was very sleepy and weak, and he got me stood at the side of the bed and started to empty the drain. All of a sudden he had grabbed me as I had hit my face on the window, I had fallen asleep standing up. I was so scared and upset, as I had never ever done anything like this before. I was worried at first that I had collapsed, but we decided that because I fell forward and not down, that I had indeed fell asleep.
The early days were hard, and it did take many months to feel remotely normal, mainly because I was still having my wound packed and dressed daily for weeks, and my rectum was very uncomfortable. I had the catheter taken out eventually, and the surgeon said that the fluid would hopefully come out my back passage and not pool in my pelvis again causing infection. I was pleased not to have that strapped to my leg, and indeed the fluid came out my bum, but it was and still is a problem. I have to wear pads constantly and feel it come out when I stand up. It obviously makes me sore sometimes. The surgeon said I would need a proctectomy, which is the remainder of my rectum removed, and my anus sown shut. I also need a stoma refashion to get rid of the fistula. I am now booked in for that in November and will let you all know how that goes. I am scared though because it is the unknown again, and I don’t want the problems again. The thought of having to heal again is a horrible thought, but I need to have this done to feel right. I am much stronger now 6 months on so I assume I will heal better.
I am expected to be in for just a few days this time, and feel more prepared for surgery and the time after. I keep reading other peoples stories about their recovery, and some are great, others not. A bit like scanning the internet and finding you have all the diseases going. I am lucky in that they won’t need to open my abdomen scar up in my case as I only have the short rectum,so they can go through the back end only.
You forget about the little annoying things that hurt, including my heels. Because I was in bed a lot of the year with illness leading up to surgery and then the long time in hospital, my heels got very red, and they changed my mattress while I was in there, to stop bed sores. My heels didn’t actually open up and ulcerate, but they were very red. I still have heel ache where it feels like it is bruised and ready to get sore.
Also now when I need a blood test, I hardly have any decent veins, as they were used constantly with cannulas and bloods, so when I recently went to my pre op, she was stabbing about like a blind woman. I remember that happening a few times in hospital too, where they either try and put it in as slow as is humanly possible which hurt like hell, or stabbing here and there.Funily enough it was the doctors who were by far the worst.