I have read some of my posts again and have decided it is time to tell you about the good things. I know the surgery sounded scary, and yes it was, but you know ? it is over and I am fine.
I like being different now, and I like telling my story. I feel empowered that I got through it and out the other end stronger, and keen to let people know that the word STOMA isn’t a scary word, and having your bowel come out through your abdomen doesn’t stop you living and having fun. It does take time to recover, but you do recover.
Yes, I can eat most things, just a few things need a bit of care and chewing. Yes, I can have a drink or three of alcohol, as long as I make sure I drink water in-between, I have been just fine. I go on holiday with no real problems, maybe I need to change the bag a bit more often if I am hot, but it doesn’t melt and fall off. I get sore skin occasionally but I can sort it out. I don’t feel odd because I know lots of people of all ages have been through the same thing. There is a great support network that you must use to the max and this will help you to feel that you are not alone. There are many Facebook pages for ostomates, and lots of great websites which I have listed on my Tomas site.
If you are scared of the surgery, just remember that you will almost certainly feel better when you have recovered, than the reason you needed the surgery in the first place. They don’t perform this surgery lightly, so you will need it if you are having it.
Give yourself time to recover. If it’s only a few months and you still don’t feel yourself, give it longer. The surgery takes it out of you, mentally and physically so you need time to come to terms with it all, and again, use the support from hospitals, GPs and counselling. My surgeon said it is at least a year before you are near your normal self, longer for others. But you do recover, and stronger than ever. Yes, there are hiccups along the way, and I am not saying its easy, and there will be some unfortunate people that have a very tough time, but as a general rule, you can live a near normal life. There is more awareness now about ostomy surgery, and I am glad to be part of that awareness.
It helped me to decide to name my stoma, and I know a lot of others who have done the same, it helps to come to terms with the new normal, and you can treat it like a separate being who can be naughty / nice/ poorly, I also found it therapeutic to write down my thoughts via this blog, I also have counselling to help put things into perspective.
I am not saying things will be easy, they most certainly won’t be at first, but know that there is light at the end of that tunnel, and the pain and worry won’t last forever. I speak from big experience, because things that could have gone wrong, went wrong for me. My scar opened up and I needed it packing for 6 months, my rectal stump blew its stitches causing pelvic sepsis and I have a small fistula at the base of my stoma which causes poo to come out there as well as the spout, I was in hospital for nearly 3 months, but even despite all of that, a year on and I feel better that before. I do have off days and I allow myself that, but I try to do the things I did before with more pride, I enjoy things more because I know that I was so ill I might never have done those things ever again.
It is ok to be scared , it is ok to be angry, it is natural and inevitable but remember that your family and friends will also be going through some feelings of fear and anxiety. They will be scared for you, and want you to be better. I don’t think relatives have a lot of support . My husband was there for me every day but at the same time had to work and look after our family, all whilst seeing me in pain and discomfort. He would see me cry all the time, and he would need to be seen to be strong for me, but deep down he had his own fears. I never knew that my husband went home thinking that the ward thought he must be a horrible person because I would cry whenever I saw him. This of course wasn’t the case for my other patients or the staff but that is how he felt.
I want others to know my story so that they know what is normal and that everyone goes through the same sort of feelings. Good luck to everyone having surgery or those who have had it already, you will only hear the scary stories, but there are many stories not so scary in the end.