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Grieving and Missing My Old Body After an Ulcerative Colitis Ostomy

by Hattie Gladwell I wished my ileostomy bag wasn’t real yesterday. I wished it wasn’t there. I wished it would go away. I knocked it while pulling down my shirt and just broke down. I’m not sure if I was overtired or embarrassed by the current situation. I’d blocked the toilet with baby wipes after cleaning up (apparently you’re not supposed to flush baby wipes) and my boyfriend was annoyed about it. He told me I shouldn’t be flushing baby wipes down the toilet, while I frantically got worked up and tried to explain that baby wipes were the only thing I could use! It was really early, like 3 a.m., and I hid under my duvet in bits while he sorted the bathroom out. I felt so bad, but he’d taken control of the situation and I felt too embarrassed to stay in a room with him! I felt really upset. I thought I’d annoyed him and I felt like it was all my ileostomy’s fault. Writing it now, the situation sounds so silly but last night it really got to me. I felt ashamed of myself, that I couldn’t even do a simple thing like using the toilet without causing a scene. Hiding in the darkness beneath the covers with my hands over my ears, I just sobbed and sobbed. I just wanted to feel my tummy the way it used to be. I cried harder as my hand moved down my stomach and as the bag rustled against my palm. I imagined my body a year ago. My stomach was neat and scar-free… bag-free. And I just missed it. I missed seeing the whole of my tummy in the mirror. I missed not hearing any rustling as I moved about in bed. I missed being able to shower without being cautious and I missed not having these baby wipe situations. Last night just bought back my whole experience in the hospital. The constant screaming for the nurses, being so high on pain relief I couldn’t even speak properly. Crying out in pain and being told I was a couple of hours from dying. I just couldn’t get it out of my head. I can’t describe the way these thoughts make me feel. I don’t think I’ve given myself time to deal with that experience. I find it too hard; it’s too emotionally draining going over and over it. But it’s something that creeps up when I’m feeling at my lowest, and I just can’t seem to shake away these memories. And that’s what makes it worse. They’re memories. They were real at one point. It’s not a bad dream that a cuddle can sort out. It’s not a bad thought you can shrug off. It was a reality once upon a time. And for me, it’s somewhat haunting. And I think I’ve come to realize that maybe I’ll never truly love my ostomy. The fact that a touch of my ileostomy or an embarrassing experience can bring back such torment at any one time scares me. I can accept it, and I can deal with it. And I can like it. I can appreciate the fact that it saved my life, and can deal with it visually. I can write about it publicly. I embrace it. But I’m just not sure I can love it, because it’s not something I’d ever have wished for, nor would I wish on anyone else. I feel guilty for feeling so negatively towards my ostomy. I know it saved my life and that without it, I wouldn’t be here. But I also just feel so angry about having IBD, specifically ulcerative colitis. It nearly took so much away from me. My job, my relationship… my life. And I’m allowed to be angry at that, aren’t I? I’m angry at the people that didn’t listen to me and could’ve saved me from surgery a long time ago. I don’t want anyone to feel disheartened by this post. Nor question my motives. I’m merely just having a bad couple of days. And I would never disregard the fact that I think my ostomy is a beautiful, life-saving thing. And I am so grateful that it has given me a second shot at life. And I’ve come to terms with the fact not everybody will accept the change in my body. I’ve accepted my body. And that’s OK. But sometimes, I can’t help but miss my old one. Maybe this is because I never appreciated it beforehand. This whole experience has made me reflect on all the time I spent pointing out the flaws I could see within myself. And now, as I look back on those moments, I regret them. I regret not realizing my body was fine the way it was. I hate the lengths I’d go to feel better about my body. And I guess I hate that I’ll never get a chance to accept my body the way it was… because no matter what I choose to do in the future, it’s never going to be the same. I feel nervous about posting something like this. I don’t want you to think I’m contradicting myself, or being hypocritical, but journaling this experience is my diary, my way of dealing. And it’s important for me to write every ounce of how I’m feeling so that I can reflect on it and move on from it. And this is why I’m writing today, to move on from last night. To accept that I am going to have nights like that. Nobody can be completely happy all the time… can they?

Coping With a Colostomy for Colorectal Cancer -- It's Going to Be OK

by Jo Phillips What does it mean to have a stoma? You might get a hundred different answers to that question. What it means to me is being part of something bigger and more important. Why you might ask? Because being diagnosed with rectal cancer at age 38 is a bit of a mind-bender. The first equation I had to figure out was: Mental health + cancer = ? As if that wasn’t hard enough to reconcile in my mind, the news that I would need a colostomy bag was unthinkable! At first, it was a coin flip as to whether it would be temporary or permanent. But after intense radiation had failed to shrink the tumor, I was told there was no chance of having reversal surgery if I wanted the best chances of survival. There are so many emotions in the run-up to ostomy surgery. The main one being Terror, with a capital T. My mum actually said she’d get a colostomy with me. Suffice it to say that has yet to happen! My fiancé Jay told me he’d be right there with me every step of the way and that we were gonna make it through this, together. However, the most memorable moment was when my sister-in-law Lesley told me that I’d “own it” and I would face it head-on as I did with every other challenge in my life. She said I was going to be more than OK. How did she know that? Through the tears, I nodded in agreement and murmured she was probably right (I was a really good liar it seemed). Inside I laughed and thought no way was that going to happen. It was me facing life-changing surgery, not her. I seriously considered not having the surgery. Sure, I’d take my chances with cancer — anything was better than getting a colostomy! Yet that was the stark reality. The fact was, part of my intestine was going to poke out of me (what?!) and I was going to poo into a bag from a hole in my belly (WHAT?!). This was not going to go well, no way, nuh-uh… So here I am nine months later. A pro at my own stoma care and loving the sense of community and camaraderie I get from being an ostomate. Yes, I bloomin’ love it! I also love little ButtFace (what I unaffectionately nicknamed my stoma). That name was meant as an insult, but now it’s a term of endearment and a seemingly infinite source of giggling-pleasure for me and my family. Lesley was spot-on once again (ain’t those kind of people annoying?) I do own it! Lately, I’ve found myself feeling more and more grateful for my new little extra appendage, for without it, I wouldn’t be writing this. And I think I may have reconciled that original equation. Yes, there’s an incurable cancer diagnosis, but with a new sense of purpose having a stoma (and a loud voice), I think I’m going to cope OK. If I have helped even one person on their ostomy journey, I’m satisfied. I’ve made something of my life and at last, there’s meaning.