1. Do you have a primary diagnosis, if so, what is it?
A: Ulcerative Colitis is a form of inflammatory bowel disease. Ulcerative Colitis is a condition that causes inflammation and ulceration of the inner lining of the rectum and colon (the large bowel). In UC, ulcers develop on the surface of the lining and these may bleed and produce mucus.
2. How long did it take you to get diagnosed?
A: TOO long haha. Well over 18 months.
3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?
A: Relief and, in a word, confusion. Not only because I didn’t know what the condition was or how it would affect me going forward, but also why my initial consultations were so far from the correct result. Every other diagnosis was simply IBS or my diet wasn’t right. I had several colonoscopies, endoscopies, sigmoidoscopies etc and each diagnosis was completely different
4. What advice would you give to someone who is chronically ill but undiagnosed?
A: Have faith. Have hope, Believe that you will get the answer. Yes you will get ups and downs and it will be incredibly frustrating, but you will find an answer. At the end of the day the health service is here to help us and not hinder us. It might seem the opposite way sometimes but honestly they are here to help.
5. Has your chronic illness changed your perspective, and if so, how?
A: First of all, I though having this illness meant I would be able to do anything that I used to do and I would simply be bed ridden for the rest of my life. My journey has been the complete opposite, if anything I am more active now than I ever have been. My social media accounts focus on raising awareness for everything IBD and a secondary focus on fitness with a chronic illness. The idea is to show that actually having a chronic illness will not determine how you want to live your life, your story will inspire others and with the right attitude you will achieve what you want. It’s also changed my perspective on life. If anything I am much more thankful for everything that I have and the opportunities that have bene presented to me since being diagnosed. Life is incredibly short and you have to make every day count. It’s made me believe that having a chronic illness is a positive and not a negative
6. What moment are you most proud of in your chronic illness journey thus far?
A: The proudest moment is where I am right now. Sure I am still not well. I am due to have a consultation with my surgeon in a few weeks’ time and discuss having my colon removed. I am mentally ready for this change. With UC, removing the colon will remove the condition so for me this is a logical step. Currently I am the fittest I have been, I spend a lot of my time trying to inspire others by posting motivation quotes on my social media platforms, posting videos of workouts, talking about mental health and the importance of talking about how you feel with a chronic condition and showing that having a chronic illness is not a death sentence. I have talked to large groups of people at events discussing what having an invisible illness is like and reiterated the need for everyone to talk openly about what they are going through. I currently work for a clothing company (scar tissue) and they had approached me due to my positivity about having my condition and how having an IBD will not stop me from achieving what I need. My overall ambition is to make this a full time job. I don’t know how yet but I am so passionate about getting this condition into the limelight and to make people see that its ok to have this condition
7. What was your hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey
A: There have been a few moments to be honest. Every time I have been in great shape physically my UC may then take a turn for the worse. Last year I was in hospital for a week having infusions to battle my condition. I couldn’t exercise or do anything that I would normally do. At the time I had got to a stage where I had finally got my body where I wanted it. Whilst in hospital I ended up losing all my muscle strength, I wasn’t happy with how I looked anymore and felt rather useless. Sitting there every day having 6 hour infusions was actually quite exhausting. I was happy to leave hospital when I eventually did but I felt so down. All my hard work had effectively gone. The new medication started to affect me in new ways. My kidneys became weak, my hair started to fall out, I broke out in Acne, I couldn’t exercise as I was so fatigued, I was in constant pain and my mental health got worse too. I started to openly cry for no reason, my anxiety was constantly acting up and I just felt incredibly down. But I had to look at this whole thing a different angle. There are people in much worse places than where I was and if I get back to full fitness and back to how I was before I became ill, I can go further and do more. Honestly, making that choice to start again is easy the journey itself is incredibly tough. But I got there and it means anyone else can too!
8. What or who has helped you the most during the lowest days?
A: Family and friends, which you would expect. But the thing I didn’t expect was the overwhelming response from everyone on social media. I have people messaging me from around the globe asking me about how I was doing, how I felt about everything, gave me inspiration and that for me helped me the most. Again it highlights the power that this community has and what being part of this chronic illness community is about. The reason why I do so much is so I can give back to this community and help others who are where I have been….if that makes sense!
9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?
A: Chat to everyone and anyone you can. Do not get bogged down with how doctors might be taking time sorting out your meds, or appointments as they will always be strained in regards to resources. Getting the right dosages are also a fine art and it is very much trial and error. Once you start talking to people you’ll realise that first of all you’re not alone. Even if you are reading this and you haven’t spoken to anyone about it….honestly, do it! You will soon see that other people are in the same position as you moreover others will be able to give you advise, or answer questions, or just make you feel better. Once you chat to someone you’ll end up feeling so much better, you’ll make life long friends and these guys will actually care about you more than you might think. If you have nobody to talk to, then please talk to me. Honestly I don’t mind. Even if you just want to vent. Do it. You will feel so much better for it
10. What would you like the world to know about life as a chronic illness patient?
A: That Life isn’t over. You are not a burden. YOU ARE AN INSPIRATION! You just haven’t been told yet. You have the power to do anything. Be positive and keep going.
I want the world to know that you can’t judge a book by its cover, you can’t assume someone is ok just because they say they are. Take some time out of our busy hectic lives to appreciate what we have and look our for people who need help. Honestly I can’t say how much we need to talk about every chronic condition and our mental health. Your mental health is just as important as your physical health and as a community we need to do more. Take it from a guy, men don’t usually chat about their feelings/emotions and hopefully after reading this other guys will follow suit. If you want to chat to me add me @ibdfitness, subscribe to my youtube channel and get some gym clothing from my bio. Look forward to hearing from you and thanks for the feature Chronic Love Club. Much love guys
Ant | @IbdFitness