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Wednesday, 17 February 2021

One Year Stomaversary // My IBD Journey

One year ago today, I had Loop-Ileostomy surgery and gained stitch (my stoma). I wrote a post about how and why it came to be that I had stoma surgery and you can click here to read that post.

This last year has been difficult for everyone, I never expected to be just under 2 weeks post surgery before being told I'd be housebound again. Ulcerative Colitis had already taken away three years and so far covid has taken away another. Nonetheless I've gone through this year with no laxatives, one flare up and in significantly less pain than the previous years. 
I didn't know how to celebrate my stomaversary because of covid. It's something I want to celebrate because it's made such an amazing impact on my life. I also want to break the stigma that comes with having a bag. People assume that only older people have them, that they leak and smell on a daily basis which isn't the case at all. If you go over to my Instagram stories, I'm going to be sharing posts of people with stoma bag(s) who've inspired me. 

So I decided to put this post together, to look back on what I achieved this year (big and small) and then make a list of what I want to achieve in the year to come (covid pending!).

What I've Achieved In The Last Year

- The blog had a huge overhaul and I'm so happy with it.
- I managed to leave my house without a panic attack for the first time in years.
- Pre-Covid I was able to walk to the corner shop and back. 
- I can eat dairy again, meaning lots of Ben & Jerrys!
- When lockdown restrictions were eased, I was able to visit my friends flat for the first time and they'd been living there for years.
- I was then able to attend their wedding!
- I visited this lovely restaurant in Ross-On-Wye with my family.
- Had a redecorate around the house and learnt some new skills.
- I received the highest amount of views on my blog this year. Calendar Countdown was more successful than ever.
- More people decided to use their time researching their own family history and/or taking DNA Tests. I found a whole lot of family and learnt so much.
- I started my own little business; Novella Prints.
- I had my first Covid vaccination!

What I Want To Achieve This Year

- I'd like to see this blog space grow.
- I'd like to see Novella Prints grow.
- Once I've had my second vaccination (and it's allowed) I want to go spend time with my grandparents. My grandma is going to show me a lot of places I've been researching as part of my family history journey.
- Spend time with my younger cousins.
- Spend time seeing friends and eating out. 
- Treat myself to some beauty treatments.
- I have a few project ideas that I'd like to explore and see if I can develop on them.
- Learn British Sign Language. This is something I've wanted to do for years but was unable to attend classes with my health. Now because of covid, a lot of them are online.
- I want to travel a little more. I feel like most, that I haven't seen enough of my own country. 
- Finish the first volume on at least one line of my family tree (I've been collating research into a book).
- Start driving again.
- Get back into therapy and work on my mental health to help achieve all these goals.

Why I'm Not "Cured"

I opened up a Q&A on my instagram and the most common question I got was if I was "cured". A Loop-Ileostomy means I still have my colon, so I still have Ulcerative Colitis. There is no cure for Inflammatory Bowel Disease, you can only have better management of it. I actually flared up over Christmas 2020 and that's something I naively thought wouldn't happen to me because I had my stoma. In all honesty, there are breakthroughs everyday and medications are rapidly becoming available to help manage, but as to a cure, you don't hear as much about the research or results of that. I don't think there will be a cure for IBD in my life time.

Other Questions I Was Asked On Instagram

Is it painful?
Having a stoma? No, the stoma has no nerve endings so you don't feel anything. Sometimes people find discomfort or have sore skin on the area around the stoma when they have ill-fitting stoma bags. 
Is it permanent? 
At the moment I have the chance to have it reversed and still keep my colon. It's something I'm not thinking about too much as I chose to go the surgery route to have a better quality of life, then Covid hit. 
Why surgery?
I had no control over my bowels. There were other medications I could of been put onto, but I felt that the three years I spent housebound was enough. I also have complications with trying to find the right medication combination to control my flares to begin with and the constant pain was adding to my depression. Surgery won't be for everyone but if everyone had a choice it would be to not have inflammatory bowel disease. 
Why did you name your stoma?
Many people who have stoma's say that giving it a name can help you come to terms with the changes to your body. For me, the image side of having a stoma was the worry. I found naming him Stitch did help. I also find referring to my stoma by his name easier than saying my stoma. 
Are you happy?
Immensely. 

As always, thanks for reading...

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