It's not your stoma, it's you: A thought on relationship worries post-op

Although my blog is about as personal as it gets - let's face it, years ago I never thought I'd be sharing bowel stories with the world - I don't often go into detail on other events in my personal life. That's largely because I think that non-health stories about me would get pretty boring, but also because my blog's whole purpose is to talk about the effects of UC and how they might affect other people, not just about me as an individual.

However, I think this story is a good one to share as it's a worry that's common to a lot of patients facing stoma surgery. In fact, it's one of THE biggest issues that people worry about. Will anyone want to date me with a stoma? Will people find me attractive anymore? Or will this bag spell the end of all dates, all relationships, and mean permanent rejection from now on?

I think, for starters, people who are in a relationship and those who are single face a different set of challenges. For someone who is single, they may worry about the prospect of dating, when/how much to tell a new partner about their illness, and the issue of rejection. For a person who's in a relationship - even someone in a happy, stable marriage - they may worry that their current partner won't find them attractive anymore, or might find someone else more attractive.

I've only ever had one serious boyfriend since the age of 15, and we've been together for the best part of five and a half years. For the most part, we've had a really brilliant relationship. We've pretty much grown up together, and we're not only together, but we're also best friends. David has been such a support through all of the illness and surgery that I couldn't have asked for someone more attentive or caring, and for that I'll always be grateful to him.

When first told in hospital that I'd need a stoma and what it meant, I remember ringing him in tears and telling him we needed to talk about something serious when he came in that afternoon. I showed him the bag that the nurse had given me - to hold, look at, and get the feel of - and explained what that meant. I remember saying pretty defiantly - 'if it grosses you out, just leave me now, don't wait until I'm better, because that would hurt more!' He said I was being ridiculous of course, and whatever made me better, he was happy with. He was even there when they marked me up with a sharpie ready for surgery - when they mark with a spot where your stoma will be placed.

Things went brilliantly at first. In the months after the operation, I think we were closer than ever. I was amazed that he'd accepted this so quickly, without a hint of disgust or pulling away. But as time went on, and I began to have periods of insecurity and low self-esteem, this amazement began to turn into doubt, then disbelief. How could someone be okay with this? I thought, at that stage feeling like the ugliest person in the world with my new stoma. If it hadn't been for us being together for so long, I don't think he'd accept it. He might think it's disgusting and just not want to hurt my feelings. I think I'm ugly, so how can anyone else think otherwise?

However much he reassured me this wasn't true, I became so wrapped up in my own thoughts that all I could see was myself as this unattractive, skinny, ill-looking girl, needing frequent treatment and further surgery. I saw myself as a liability. We're both young - we were still teenagers at this time - and I often thought that a guy this age would prefer a healthier girl with a 'nice' stomach. Let's face it, there's plenty of them out there!

I became so sure of my doubts that I began to push him away. I was so convinced that he'd want to leave at any moment, that I was determined to be the one to make the first move. What I didn't realise, however, was that I was slowly destroying something that was already perfect. He had accepted it, as I would later (too late) come to realise. But I just couldn't see it. And in the months that continued, I started to become paranoid, snappy, short-tempered and quite honestly a pain to be around. I was really, really awful. I really don't know how we held it together for so long.

Although I was confident in every other respect - dressing, eating, going out and about - my insecurity about my relationship was the one issue that simply wouldn't shift. I went back to university in September, and until April this year, we carried on what was a really strained relationship - fighting, falling out and generally being unhappy. Logically, I couldn't understand why I still didn't believe that he was okay with my appearance - but I just couldn't get the thought out of my head. I became obsessively paranoid over other girls, largely because I saw them as being better and prettier than me without a stoma. And eventually, without going into too much detail, someone else did eventually come onto the scene on his side. We finally ended our relationship of five and a half years, and I felt absolutely heartbroken.

At first, I still thought it was because of how I looked. KNEW IT. My worst fears had finally been realised! I was ugly, and he'd finally found a prettier girl who didn't have this illness, as I'd always thought would happen. And then, after a lot of time alone thinking and turning things over in my head, the penny finally dropped. It wasn't the bag that had ruined our relationship. It was me.

Yes, of course I'd been ill. 'You couldn't help how you were feeling', people said to me. That was partly true. Insecurity is a big part of having a stoma. But in my insecurity, I stopped giving credit to the boyfriend who'd stuck by me for nearly a quarter of my life - and I'd started to judge his character based on my own feelings, which was completely unfair and undeserved. He never did anything to make me feel unloved, unattractive or unwanted, yet I'd spent a year throwing around accusations and getting angry because of my own low self esteem. I never once sat and told him how much I appreciated him, how grateful I was for his support or how much I cared for him. I talked a lot about my illness itself, but not how it really made me feel. No wonder that he didn't want to be in this relationship anymore - it had become miserable for both of us.

And so, we sat down and had the longest conversation I think I've ever had in my life (all over the phone, because I was still in London - thank goodness for unlimited minutes!) and opened up about how we'd both been feeling for so long. Finally, we decided what we'd had for so many years was too good to let go, and drew a line in the sand to start again. From then on, it's been absolutely brilliant, just how it should have been for the past year! I love him to bits and he's my real rock. I feel like since I finally opened up about my insecurities, they began to melt away. I finally believe that he was okay with it, and my confidence soared.

But for anyone approaching this stoma surgery in a relationship, my biggest piece of advice is this. If your partner says that they're okay with it, then please, believe them. This person loves you for who you are. Not for what you wear on your stomach. Your stoma shouldn't dominate any aspect of your life, let alone who you love. If someone is decent and genuine, and really thinks a lot of you, then they will stand by you. And this is credit to them, their goodness and their honesty. Love that person all the more for standing by you and helping you through. If you feel insecure, tell them, and tell them exactly why - make sure they know it's your problem, not theirs. 'I wish I didn't feel this way, but I just feel so unattractive. It's nothing you've done, it's just how I'm feeling. I'd really appreciate your support right now. Thank you for being there for me.'

And if they don't accept you with a stoma (this goes for single people too), then they are NOT worthy of your time. I know that's pretty easy to say. But just think - a person who would reject you for your stoma isn't someone you could confidently spend a life with. Disability or illness could theoretically strike at any time. What if you'd developed another illness, or been in an accident? Would they have run away then? What about growing old together? Would that gross them out as well?

Where one person rejects, another will accept. Online in various forums and groups, I've spoken to people who've had stomas since birth, and have gone through their whole lives navigating the dating world with a stoma. Some of these people have had many different partners. I think this partly comes with confidence. For these people, they've always had a stoma, so it's just a natural part of them and they probably feel more self-assured when talking about it. For a person who's newly had surgery, the big change in body image can be a problem. If you speak to a potential date and sound negative about your stoma, down, worried or insecure about it, they might think there's something to worry about, or that it's some big deal. If you're able to adopt a 'this is me, love it or leave it' attitude, it seems that potential others will be far more accepting - at least, this is the general opinion out there online.

Gaining confidence is easier said than done. But those who truly value you, will accept you as a whole, not in parts. That might sound ridiculously cheesy, but it's the truth. A partner has to be someone who takes you as you are, warts and all. Now that's a person worth keeping.