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World IBD Day

May the 19th is world IBD day for more than 10 million people worldwide. Today I’m doing a joint post with my boyfriend Adam giving his first-hand experience what it is like to live with IBD. Today is about gaining awareness and considering stepping into someone’s shoes, with my review on the 24 hours with Crohn’s app. Read more about a real life story with Adams story below. 

Our Journey Together

Firstly I would like to introduce my boyfriend Adam, we met online and the first thing that we connected about was living with a chronic illness. I knew I wanted to get to know him more as we shared such similar journeys. Fast forward 11 months and we are sharing our lives together, in this time I’ve got to understand what life is like for someone with Crohn’s, especially when I took the challenge of trying the “In My Shoes – 24 Hours with Crohn’s or Colitis”. My boyfriend continues to inspire and motivate me every day. Managing a full-time job and driving to see me every weekend, always being the strong one who just gets on with life. I was surprised when I tried the app, how he manages work so well. Crohn’s is more than a bowel problem and my boyfriend suffers daily fatigue even in remission.

In My Shoes – 24 Hours with Crohn’s or Colitis

During my experience with the “In My Shoes – 24 Hours with Crohn’s or Colitis” I frequently had a notification on my phone too urgently evacuate my bowels. I must have missed the toilet a few times as I only had three minutes to reach the bathroom. The app reminded me that I would now have to change as I had experienced incontinence. I found it challenging and disruptive to my daily routine having to change my clothes regular. The app also gave me notifications when I would be experiencing severe stomach pain to which I would have to sit down and not eat for a period of time. This occurred just as I was about to eat my lunch so I have to leave my lunch for later on which would disrupt my regular eating routine and keeping my energy level stable. The app continued throughout the night to disrupt my sleep when I needed to go to the toilet, but because of my medication, I would have experienced incontinence. I realised that my boyfriend would have disrupted night sleep which for me would affect my daily energy levels. When I had finished the app for the day I discussed my experiences with my boyfriend and realised that he does an amazing job being able to function working full time and driving long distances without access to a toilet. After this experience I was more mindful of how much it affected him and to this day it continues to motivate me to study and be able to work someday.

Adam's IBD Journey

Today I have been asked by Sarah to share my Crohn’s journey over the last 11 years. This will include prior to my diagnosis through my diagnosis to the present day.

The journey began 11 1/2 years ago. At first, it manifested with mild stomach pain and frequent urgent visits to the restroom where unfortunately sometimes I didn’t make it in time. This came at a time when I had just started one of my most important years in secondary school. I spent months and months fighting and fighting my GP’s surgery to do something and one thing that really annoyed me was a doctor who said that I needed to lose some weight and I would feel better.

After what seemed like a lifetime I was sent to my local hospital who immediately referred me to the nearest children’s hospital which was 25+ miles away. They within a few days sent me to have a colonoscopy and an endoscopy. After that was completed I was taken back to the hospital after only 2 days in a wheelchair as I was in that much pain I could not walk. They put me on multiple medications that day Azathioprine to suppress my immune system, 3 x daily anti-biotics and also high doses of pain relief. After a week I started a strong monoclonal antibody called Infliximab. I was scared to start because of all of the side effects. After 6 / 8 weeks I was feeling a lot better and was starting to gain weight. After approximately 1 year I was in a spell of remission and the doctors decided to taper off the Infliximab and kept the Azathioprine ongoing.

I was fine for quite a while and was in a good spell of remission but after some time I had some stress of finding a job and other things. I had a flare that started off small and snowballed into my second treatment of Infliximab. Everything went fine until the second dosage where I had a severe anaphylactic shock and stopped breathing. This put an immediate stop to all of my treatment and I was okay for around a year and then had issues again. I got to the point where I was back in pain on regular codeine phosphate and needed to do something to get back into remission. I had multiple tests and a large lump was found on my bladder. The only real option was to have surgery to fix it. The surgeon was unsure if he would be able to do it via keyhole. On the table before I was put to sleep I asked they not to use keyhole and just to do what was needed. The operation was supposed to take 1 hour and lasted 6 hours as I had to have an ileostomy.

After 6 months I did a tandem charity skydive from 14,000 ft to raise money for my local hospital who helped me after my operation. After another 6 months passed I had my ileostomy reversed and everything remained in remission. Since my operation, I have only been on turmeric tablets and some times I have had to have folic acid and vitamins for the last 8+ years.

Even when I am in remission I still feel mildly unwell daily,  I have frequent pain when I eat certain foods and this can cause frequent visit to the rest room and still very rarely don’t make it there in time. However Crohns Disease is not just living with the stomach problems; it also causes me to have joint pain, sore eyes and chronic fatigue to list a few. There is a good diagram showing some of the many symptoms that can be caused by the life long disease; link below. 

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