Friend

I am 35 years old and I have Crohn’s Disease.

Before I became sick, I was a happy, carefree, and easy-going type of person. When I was in my early twenties I always loved going out and spending time with my friends and family. I was at the age where my life was normally a good time full of adventure, but that didn’t last long for me because I soon started to become sick more and more. The most shocking thing was when I was my adventures turned into making way too many trips to the bathroom with diarrhea and I was constantly vomiting. This was accompanied by severe cramps and dehydration. It was also hard dealing with the large amounts of fatigue, as I was completely exhausted when things were at their worst. Something wasn’t right and my time normally spent going out turned into staying at home most days being as close to the bathroom as possible.

I was first diagnosed with IBD in 2015 when I was 26 years old. I was told that I had Crohn’s disease, but then in 2018, I was informed that it was actually ulcerative colitis. I then had surgery but since then, have been told that I might actually have had Crohn’s disease all along! It is a confusing condition to live with, and even the doctors have struggled to give me an accurate answer. Honestly, I can’t help but feel that if I had received an accurate diagnosis in the first place, I wouldn’t have had to suffer for so long.  

At first, everyday life was still hard. I would get so anxious at the thought of being out in public, stuck with no access to a nearby restroom. In fact, even simple things, like the thoughts of having to stand in a line at the grocery store would make me really nervous. My days of going out with friends were over, and the isolation and pain took over. Having IBD was a life changing moment.

I am naturally a very patient, level-headed person, and a believer in destiny. After I received my diagnosis, it took me over a full year to fully accept it. It was only after I had experienced the challenges that a severe flare brings that I could fully understand what living with IBD really meant. I then felt ready to accept this challenge, and at that moment, a part of me decided to adopt a ‘whatever happens’ attitude.

Over the years I have tried all the treatments available, from steroids to biologics. At first medication was able to control my symptoms, but at times I would have flares so severe that none of the medications would work.  In the early days, the steroids would work like a miracle drug for me and reduce the immediate pain, but I was in for a surprise when I suffered from most of the side effects. I got so embarrassed at having to answer questions from others who wanted to know why I had suddenly gained or lost so much weight and why my face was so swollen. Very quickly I lost a lot of my self-confidence and I started to avoid going out. I couldn’t even look at myself in the mirror.

There is a huge amount of stigma attached to IBD. It really isn’t easy to talk about things like diarrhea and vomiting. I don’t want to talk about it and people don’t want to hear you talking about it, which can make you feel very alone. We need to increase awareness of IBD to help break down the stigma; it would help people accept that the condition exists and that we should be able to talk about it freely.

Trying to maintaining a positive outlook on life and being able to talk openly about IBD has been very difficult for me. I’m still not comfortable telling my story so openly to people that don’t know me. I try to surround myself with my family and some close friends who are supportive and understanding. I am very lucky as I have my mom, without whom this journey would have been impossible. 

I have my family and close friends, doctors and medical teams including some very caring nurses over the years and every one of them has played a major part in helping me get to where I am today. I am in a better place health wise, not perfect but more manageable, but I know this could all change in moment’s notice.

I do feel it is essential for patients to talk and meet with each other as only they can really understand each other’s struggles. It is still hard for me so I’m thankful to Marc for letting me share my story anonymously.

It has been a difficult and challenging journey, but since finding the right medical group and having my mom as well as some other family members, who have helped guide me through it, I am now feeling and doing better. I’m also very thankful for the resources the Crohn’s & Colitis Foundation provide to patients and family members dealing with IBD.

Marathon #82 – Recap