Today I went to a stoma support group for the North Essex area – it was okay.. The first challenge was trying to figure out where it was, all I knew was it was down the road where the mortuary is. I turned round to Dad and was like “oh look, the mortuary, the only part of the hospital I haven’t been to yet!” Don’t think he or Mum were too impressed… But we agreed that was one place I was going to avoid at all costs!
All the Colchester stoma nurses were there, as were people from Homestyle (the company who deliver the stoma supplies). There was also a mother and daughter duo there, who both have stomas to talk about their experiences and how they’ve come about needing a stoma. It was good to get an insight into the lives of others, however everyone’s situation is different and the reasons behind needing a stoma are so different. Even two people, both with Ulcerative Colitis can have completely different situations, even with the same diagnosis.
One thing I noticed when I walked in the room was just how young I was in comparison to everyone else. All the others there (apart from another young lady) with stomas were 50 plus.. One of the speakers said she was lucky at not needing a stoma until she reached 70 years old. I know she didn’t mean anything by it, but it just bought everything home to me about how “unlucky” some would say I am needing a stoma at the age of 22.
I was seeing a guy, we’d booked a holiday together for October with my family, hotels for weekends away together, I’d bought an outfit for his Mum’s wedding later on in the year, a present for his daughter when I was to meet her… Then he broke up with me the week after I found out I’d definitely need more surgery. That’s been going round my mind a lot recently. I’ve been really struggling with accepting my body and the fact I now have a bag, and then he broke up with me because I need more surgery. There were other things he said too, but he said he doesn’t want to have to be there for me through another operation – even though this one is to improve my quality of life, not to save it. Everyone keeps telling me that if that’s the way he wants to be then I’m better off without him, but it’s hard to see that right now.
One of the speakers today was saying how lucky she was to have her husband stand by her through everything she has been through, and yet the guy I was with has just walked away and left me. He helped build my confidence up after my first surgery, but he chose now to walk away, when I’m healthy and no longer fighting for my life. And that just hit me all over again and I started to cry in the middle of the meeting.
I spoke to one of the nurses and she helped calm me down a bit, but today made me realise that I’m really not okay with my stoma and life with colitis. I hate it and I know I’ve got to accept it becasue this is my life now, but I don’t know how to.
I am still in a flare, and have been for the past year. It’s draining.
I feel like I’m constantly pretending I’m okay to the outside world, when I feel everything but. At first I was hiding my bloated tummy, how often and also how little I needed to go to the toilet, the fact there was blood every time I did go and I hid it all with a smile, burying my head in the sand. I pretended I was okay, even though I knew deep down I wasn’t and that there was something seriously wrong.
Now I’m still pretending I’m okay. People think I’m “cured” now I’ve had surgery, but that’s far from the truth. I still have colitis. There are still times when I physically cannot leave the toilet in fear of messing myself, despite not having anything pass through there anymore. I’m still putting on a smile each day, because the only other thing I know how to do is cry and I’m fed up of crying. I hate pretending I’m okay, because I’m really not and today made me realise that all over again.
On the plus side though – there was a raffle and I won an easter egg! Who knows what the fibre content is in the chocolate, probably ridiculously high but it was that or a fruit basket, so I opted for the chocolate obviously!!