My name is Ayaaz Bukhari and I am 22 years old. I live in London, and I am currently looking for a job since graduating from University. My passion is sports especially Tennis and Badminton. In my spare time I like to play board games. I have Crohn’s Disease, diagnosed at age 10 just after contracting chicken pox. I had stomach ache and acute diarrhoea that wouldn't stop.
It took a couple of months to get diagnosed, although the GP was involved within a week of me realising there was a problem. When I was diagnosed I felt unsure and nervous. I had no idea what Crohn’s Disease was, and I didn't really understand what it meant for me and my future.
The biggest effect of having IBD was adjusting to all the many hospital visits that are now part of my life.
The support received from loved ones is immensely important to me. I rely on them for practical management of my medication, accompanying me to hospital visits and medical interactions. They really are part of the whole process. They’re also my source of emotional support.
Ayaaz
Living with Crohn's Disease
My advice to newly diagnosed is that although overwhelming at the beginning, it can be very manageable, so persevere through the hard times.
My name is Seema Bukhari and I have two sons living with Crohn’s Disease. I am 54 years old and I also live in London. I was a Pharmacist, then a Carer and now I do voluntary work with Home-Start (supporting families with young children) and Crohn’s & Colitis UK.
My relationship with my son Ayaaz is close. I am very protective due to how young he was when diagnosed. Ayaaz deals with his condition very positively. He hasn't let it stop him in pursuing his desires.
I learned he had Crohn’s when he was diagnosed at 10 years old. Since he was so young when diagnosed, Crohn’s is part of our language so it's not difficult to communicate with him now. However I tried very hard in the beginning to use positive language always and not to always talk about the Crohn’s, but also not to shy away.
I am always worried about him and the fear of a flare up occurring. It is in the shadows all the time, even in times of remission. I will not allow myself to plan without making sure I am near or able to be near when required. I am always trying to keep him free of all stress so I probably pamper him!! Definitely!!
Watching him go through a flare is so mentally painful that it takes a huge effort to put on my practical head and get him through it.
My message to those supporting someone with IBD through my experience with Ayaaz is to listen and act as much or as little as the person wants. Make their life as normal as possible. Try and help them achieve a can-do attitude by giving them the message that they are more than the Inflammatory Bowel Disease (IBD). And help them to slow down when in a flare.
Seema
Mum to Ayaaz & Zayaan
My name is Zayaan Bukhari and I am 18 years old. I to live in London and I am a student...about to start my A levels at Uxbridge College. My passions are studying space and the medical field. I play lots of racquet sports, guitar and video games.
I have Crohn’s Disease. My Mother, Seema realised something was wrong when I constantly had a minor temperature and was not developing at age 11. I had no symptoms at this point but once tests were done and I was diagnosed, I began to experience stomach pains and frequent bowel movements. I was diagnosed very early.
I didn't fully understand what it meant to be diagnosed with Crohn’s Disease, but I wasn't overly upset because my symptoms were so mild at the beginning. Recently I experienced my biggest flare and it feels like I have just been diagnosed. I missed 2 years of school on account of it and had to go through surgery to aid my remission. The mental effect has been difficult to overcome.
The support of loved ones is extremely important, it has carried me through. I don't think I could have managed all the practical affairs and the mental strain without them.
Zayaan
Living with Crohn's Disease
The advice I would give to newly diagnosed people is not to give up, even though you may feel like the mental and physical pain is never ending and out of your control. No matter what state you are in it will change for the better. It may be confusing in the beginning but you will come to understand your condition.
My relationship with my son Zayaan is also extremely close. He shares practically everything with me. Having had his worst flare up at 16 years old, he had so many emotions to deal with and he turned to his parents for help and support. With support he is extremely positive and will always find rays of hope.
I have been on his journey since his diagnosis at age 11. Talking about Crohn’s Disease comes easy to us as a family now as we have 2 members living with the condition.
We aim to use positive language and not to dwell on it more than necessary, hence why we give them sympathy only when necessary. But I admit I pamper and worry about Zayaan too.
Seema
Zayaan's Crohn’s Disease has become a part of my life. I stopped working as a Pharmacist to focus on the children when both were diagnosed. It's heart breaking watching your child going through a flare. The feeling of helplessness and sometimes hopelessness. I think I try and take away all additional stress of life and hence have spoiled my boys, and I continue to even though they are young adults.
Are you supporting someone living with Crohn's or Colitis?
It can be really hard to know how best to support someone who’s living with Crohn’s or Colitis. The good news is that there are lots of things you can do to help.
