cheering for ali

It being the World IBD Day today and all, I want to talk about Crohn's and fighting Crohn's. I'm currently in remission, something I never experienced until I had my first operation. Suddenly, life wasn't all about toilets, cramping, agonising pain, isolation, weightloss, fear of food, worthlessness and lost hopes. Slowly I could step out into the world again and feel enjoyment. I reminisce happy moments with my partner out of isolation and we had a great eight months before my next operation. I elected, I chose, to have my stoma reversed, hoping to have a healthy life without a bag. My Crohn's wasn't onboard and came back with a rage. The following few years the walls came crashing down and left me with very little strength. The world became hazy and I felt like I was sleepwalking through life. I made some very big changes in my life in a desperate attempt to rebuild it and make it more sustainable. A separation brought things to a halt. I finally realised that I was dealing with just about everything the wrong way. I started therapy and it became a turning point. I had been ill for such a long time and I had forgotten how to live when life isn't about survival and the choices aren't limited to fight or flight. Crohn's and the multiple operations broke me and there was very little left of the person that I used to be. Therapy made me realise that I had to start thinking about long-term consequences and start living a life beyond survival level. 

Having a flare-up is obviously the worst part of having Crohn's and finding a way to a lifestyle that will as far as possible proctect me from a flare-up has been my mission for the last couple of years. Acceptance has been the catchword. I've realised that to adjust doesn't necessarily mean that you're losing out, on the contrary it may just mean that you're discovering unknown land and end up finding something better. Acceptance for me has meant I've stopped comparing myself to healthy people -  I've got Crohn's, a third of my colon left and a permanent stoma. I had to bring change to my life, since the way I dealt with things, not just my illness, was destructive to myself and others. I definitely belong to Ali's number 2 category. I've always looked for answers to my illness in my own behaviour and tried to deal with it to an extreme extent in terms of diet and alternative therapies. I've never quite been able to see the wood from the trees. I've focused on the small stuff, things that didn't matter in the end. 

I'm not in a good place yet, but I hoping I'm on my way. Recovery, physical and mental, is hard, it's a learning process. I feel very lucky that surgery worked for me, knowing it's not like that for everyone. I no longer become paralysed with fear by just thinking I might become ill again. The scars of the emotional trauma brought on by illness and surgeries aren't bright pink anymore. I've broken my isolation, made new friends and I no longer think that I have no place in this world. I have a long way to go, but I'm out there trying. 

Today, and every day, I cheer for people like Ali, because I've been where she's at. I hope she finds some respite sooner than soon to be able to get out of her towels and break her isolation to enjoy a good run in a summery Central Park. Being well is bliss, especially to those of us that are sick. 


  1. Thank you for this post. I feel for Ali too, and I found your blog from her comment section. I suffer from UC and have good days and bad days, and on very bad days, I think about surgery. You're so brave to do this and I applaud you. I'm so scared and how it may affect my life but I know it's all worth it not to suffer anymore.


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