I’ve been living with Inflammatory Bowel Disease (IBD) since I was 7 years old but I haven’t ever been involved in the community or advocacy side of things until recently when I had surgery.
Today is World IBD Day, a day to unite people around the world who have ulcerative colitis or Crohn’s Disease (both forms of IBD).
One of the things that has been really helping me during recovery is finding other folks online with some form of IBD, who’ve also had surgery and now live with an ostomy. I have watched so many videos and read so many blog posts from people in a similar situation to me but further along in their journey and it’s like receiving a massive hug. My life completely changed in just one month and hearing other people’s stories has been an invaluable part of adjusting to my new life.
I’ve yet to meet anyone else in person with a stoma since my surgery other than the old ladies on my hospital ward but I have made a couple new friends online. One of them is Thaila Skye, she has Crohn’s Disease and had her first ostomy surgery in 2010 and has documented her journey on YouTube. Her videos have been so useful to me and she actually tagged me in the IBD Advocacy Tag which has been making it’s way around the internet. So I thought I would answer in blog form.
What form of IBD do you have?
I have Ulcerative Colitis which like I said I was diagnosed with when I was 7 years old. My mum is convinced I’ve always had a dodgy bowel because as a baby at 2 months old I was in hospital because I had green poo. My colitis affected me in a way that inbetween flares I was completely fine, no symptoms at all but when the flares came, they meant business. I had subsequent flare ups that would last a couple months at age 9, 12, 14 and 15. Then after a blissful 10 years in remission I had a severe flare up age 25 that resulted in me having emergency surgery to have my colon removed. And year we are today, 3 months on!
Why is IBD advocacy important?
The advocacy of others has helped me so much during recovery. I don’t know what I would have done if I lived in a pre-internet time, I imagine it would have been a very lonely experience. I have also been very open about my own journey online and seen the direct impact of me talking openly about IBD and stomas. It’s an invisible illness and more people than you think suffer from it or are living with stomas. The invisible-ness of it creates a lot of stigma and on top of that is the stigma surrounding poo and bowel movements. I’m grateful for the advocacy of others and doing my own advocacy is important to me to remove the shame and embarrassment a lot of people feel.
Describe a socially awkward moment with IBD.
If I had any socially awkward moments with IBD they probably happened as a teenager and it was so long ago I hardly remember! Naturally there was a lot of running to the toilet and when I was 15 I had to have infliximab so I went into school every day with a cannula in my hand. Luckily, I haven’t had any bag leaks since being out of hospital *touch wood*. But the main potentially awkward thing is that whereas most of the time my poo didn’t smell, now it always smells.
What is a common stigma you run into?
To be honest, I haven’t personally run into any yet. But as I’m recovering from surgery I’m using a walking stick so when I go to use disabled toilets people don’t question it. I am aware however though that people with stomas often face abuse for using disabled toilets because their condition is invisible even though we’re entitled to use those facilities. I’m not looking forward to that once I stop using my stick.
What do you want other people to know about IBD?
I would like people to know about how mentally debilitating it can be as well as the physical aspect of it. The anxiety caused by the worry of maybe having a flare up, how just your normal food poisoning can send you into complete panic. I’ve never suffered with mental health problems but this last flare up, surgery and now having a completely different life has really taken it’s toll on me.
What a lovely note to end it on! People online have been praising me for how positive I’ve been through this and I mostly am but I also don’t want to sugarcoat the situation. This is hard. But that’s why the advocacy is important, it helps people like me get through these difficult times and for our friends and family to understand better what we’re going through.
Thanks Thaila for tagging me! I’m still very new to this community so I can only think of one other person to tag (if they haven’t done it already) and that’s Katie May. Her blog has also helped me immensely!
![Dear Learning 🤓 • #dearjune • [PHOTO FROM ONE YEAR AGO!]
This time last year I’d just had my second major surgery in the space of 5 months.
The past 18 months for me have been a time of serious learning - about myself, my body & my priorities & capabilities. But also about disability, the disabled community and spoons 🥄
I’m so grateful for the space and time people have given me to show me the ropes & teach me things I, unfortunately, had been oblivious to before as an able-bodied person.
Thank you so much for being a continued part of my education. I’m so glad I’ve never stopped learning.
What have you learned/been learning since leaving formal education?
Tomorrow’s #dearjune word is Home 🏠](http://scontent-frt3-1.cdninstagram.com/vp/f477351ca99f1e3ba8e124544462e96e/5D83EFDE/t51.2885-15/sh0.08/e35/c0.164.1391.1391a/s640x640/64422360_474673496618626_3107163844884256749_n.jpg?_nc_ht=scontent-frt3-1.cdninstagram.com "Dear Learning 🤓 • #dearjune • [PHOTO FROM ONE YEAR AGO!]
This time last year I’d just had my second major surgery in the space of 5 months.
The past 18 months for me have been a time of serious learning - about myself, my body & my priorities & capabilities. But also about disability, the disabled community and spoons 🥄
I’m so grateful for the space and time people have given me to show me the ropes & teach me things I, unfortunately, had been oblivious to before as an able-bodied person.
Thank you so much for being a continued part of my education. I’m so glad I’ve never stopped learning.
What have you learned/been learning since leaving formal education?
Tomorrow’s #dearjune word is Home 🏠")
I had an experience quite similar to yours in the ways it was a health condition that changed my life in just one month, and is stigmatised to talk about. Except my condition was called Psychosis. I’m really grateful for your advocacy during this difficult period, and I think it fosters acceptance and curiosity the way a lot of your work does. So, thanks.
It’s nice to know you found other people like you Hannah but it’s always nicer to simply stick with someone you trust as a human being whoever that may be at the time. Everyone gets axiety but you must let go of emotions if you are in distress. You can can always come alive again later!
I’m so glad you’ve got people around you that have helped! I have family around me, but like you say they will never understand what it’s like. I don’t have anyone that has any form of IBD to turn to which is very difficult. I’m also in the next month or two going to be undergoing 3 step surgery which is going to result in me having an ileostomy for sometime. I’m not looking forward to this one bit, and that not because of the operations themselves it’s because afterwards I have no one that will be able to understand how hard it is! Mentally I find having Crohn’s disease extremely hard as it is.
Anyway the reason I say all that is because your videos do help feel me with hope, hope that actually I can do this and I’m not alone! Yes I don’t no you at all but somehow it’s still comforting. Hopefully one day I can find people like you have around you just for that extra support.
Hey Hannah your situ is pretty similar to mine. If you want to meet another London baggie feel free to get in touch! Happy to hook up for chats and coffee! Ele xx