Today has been a bit of a write off, after last nights abysmal sleep I spent the day feeling exhausted, emotional and just a bit crap. There is no rhyme or reason to my emotions at the minute, sometimes Im feeling fantastic, really positive and raring to go, at other times I am feeling low, Im teary and finding things tough.
Today I am feeling very down. I look in the mirror and see my scar and the bag and I feel so unattractive.
Before the surgery I was kind of upbeat and didn’t think I would feel bad about my appearance, I think after being ill for so long, vanity was the last thing on my mind. But now the dust has settled and life is going on, it feels like an issue. Im very conscious of smell – I worry that I smell of poo. Timm tells me in all honesty that I don’t, and logically I know I don’t, the bags have filters and the output actually doesn’t smell like poo anyway! I think its just that I am aware that I have waste sat in a pouch on my stomach and the fear of it sets in.
At times when Im feeling down, I can’t imagine how Timm can bare to be near me. Surely it must put him off? He can’t really want to hug me or lay next to me in bed? With my gurgling stomach and bag of poo, why would he want to put his arm round me? These feelings are tough. My eyes are filling with tears now because those thoughts make me feel like Ive been punched in the gut.
Its hard to look in the mirror at the minute, Im both intrigued and disgusted by my new body. Having to clean my skin and stoma means touching it and being aware of changes to my skin, but there are times when Id love to just cover it all up and not look at it, empty it, clean it. There are times when I just want to stick my head in the ground and pretend its not there.
I worry Timm will not find me attractive any more, after all, if I don’t then how could he? We had a chat today after I cried a LOT. He is a wonderful fella you know, he tells me that this will never affect our relationship, that he loves me and everything will be ok. He says all the right things and he makes it better.
The kids are honest. Im glad of that but its still hard. They tell me its ‘weird’ and that they don’t like seeing my stoma, they say that it upsets them and avert their eyes if they are with me when I don’t have my bag on. We have always talked openly and honestly with the kids and the same goes with my surgery. Its been a tough few weeks for them and Im so proud of their resilience and courage. I can’t imagine how scary it is for a child to know their mum is having an operation and I was away from them for two weeks! But I do feel sad, I feel like the bag is a barrier between us, they don’t like it and so they’re not as likely to sit on my knee or cuddle me and that is hard. But I won’t push them, they need to deal with it in their own way at their own pace. Im sure as time goes on, they will get used to it and it will just become normal. Its such early days so I am sure things will get better.
Things WILL get better, I know that. I will get used to my bag and it will become more normal for us all. I keep threatening to do a quote a day on my bag a la Matt Helders (Arctic Monkeys) drum skins…
Im thinking if I have to wear this bloody thing, then I may as well rock the shit out of it! Im trying to think positively by looking at how I can still feel like me through all of this so Im looking at clothes that will work better with a bag, ostomy covers and even some nice underwear and swimwear.
I struggled with whether to post this today. I do not want to come across as needy or whingy. Or as one of those girls who say ‘oh Im ugly’ so that others say ‘noooo you are SO pretty’ – you know the type! That’s not what this is about. Anyone who knows me, knows Im a fairly confident person. But I thought it was important to chart the negative feelings that come about with having this surgery. For others who are going through this to know that there are other people who are feeling that their confidence has taken a bit of a thrashing.
I refuse for this to be an entirely self pitying post, so thinking of the positives…
It was our son Charlie’s 13th birthday party yesterday, Timm planned it all and made him a BMO cake from Adventure Time and it was fab, he just had some friends over to watch a film, Timm set up the projector in the living room so it was like a cinema and made a ton of pizzas and popcorn. A lot of Charlie’s friends are budding musicians so they brought their guitars and all had a bit of jamming session. It was a lovely night made better by the fact that Charlie said we weren’t an embarrassment to him… High praise from a teenager!
Timm and I are continuing to plan for our trip to Vietnam and Australia in December – Im so excited. I can’t wait for us all as a family to experience so many new things and it will have been 14 months since I saw my sister and her family so it will be fantastic for us to be together again. The fact that I don’t have to worry about a flare up just makes it all so much better. I joined the Ileostomy and Internal Pouch support group and have been looking on the forums for travel advice. I got a Travel Certificate which explains to airport security that I have an ileostomy, you can get one either from your stoma nurse or the IA using the link above.
Just three more days till I am off the steroids! Woohoo!! I am hoping that once I have finished the steroids that problems such as insomnia and mode swings will stop too. There’s a good possibility that my down mood today has been magnified by the meds, so thinking of being steroid free is a real positive thing for me to look forward to, I have been on them now for almost three months.
Im sorry that todays post is a bit of a pity party. My negative feelings today have been really overwhelming, I have cried a lot and just felt really sad. I haven’t been out of my pyjamas and barely made it out of bed. But I know that there will be good days as well as bad and as rubbish as today has been, I have got through it and tomorrow will be a better day!
Thanks for reading, please feel free to keep sharing the blog with anyone you think it could help.
Love Sam xx