There’s light after stoma surgery

Patient Story - Rocco shares his experience of Crohn's disease

When Rocco Mann, 20 from Banbury in Oxfordshire was first diagnosed with Crohn’s Disease, his biggest fear was ending up with a stoma bag. When his worst fears came true, Rocco learned to embrace having an ileostomy and appreciate the life it has given him.

Rocco - Patient Story

“I was first diagnosed with Crohn’s Disease after experiencing symptoms around late September/October 2022. I was experiencing extreme abdominal pains predominantly on the right hand side, being sick endlessly week in and week out plus diarrhoea. I was put on the NHS waiting list but my symptoms got so frightening and severe that I paid privately to have a colonoscopy. I got my diagnosis around December 2022, I was grateful that I ended up paying privately as if I had waited for my NHS appointment, I may not be here now.

“After my initial diagnosis in December, just a month later I was being rushed into hospital needing emergency surgery and I had my ileostomy formed (a stoma created from the small  bowel). I was also put onto Infliximab injections to help keep my Crohn’s Disease under control. 

Little did I realise how much my life would change for the better

“When I was first diagnosed with Crohn’s Disease, I would watch programmes on Crohn’s to  try and educate myself, but every time I saw somebody with a stoma bag on TV, I was terrified that it would happen to me one day. Little did I realise how much my life would change for the better with my ileostomy, compared to the horrible symptoms I was suffering from pre surgery.

My confidence was all but gone

“Just after having my surgery, I struggled massively. My physical health had improved, but my mental health was a million times worse.

“My confidence was all but gone. I was afraid to show anyone my bag and I couldn’t understand that at just 19 years old, that this was now my life. As the weeks started to pass, I learnt to embrace my bag. I realised that although other people’s opinions did worry me, at the end of it all, stomas saves lives. I also now realise how strong people with a stoma bag are. Anyone with a stoma bag has to fight day in, day out. I’ve learnt to love my stoma now. 

“Prior to my surgery, there was practically nothing I could eat without being sick, except soup and ham sandwiches. I lost so much weight. I went from around 9 stones to 7 stones in the space of 3 months. I now have the freedom of being able to eat. It’s taking a while to get used to, especially learning what I can and can’t eat with my ileostomy.

I’m a warrior against a cruel illness

“I still have many tough days where I question ‘why me?’ I can’t put into words how amazing my family has been during my illness. My mom and dad both stayed with me from 8am – 8pm every day for the entire 12 days I was in hospital. Without them I don’t know where I  would be, they’ve helped me through everything. My sisters have done so much for me too. My whole family means the world to me. I’m doing so much better than I was a few months back.  When I look back on the tough moments, I remember that I kept fighting and I’m a warrior against a cruel illness. My stoma has given me my life back.

Don’t lock yourself in the dark, there’s light at the end of every tunnel

“I told my story in the hope that more men would come forward and open up about having an invisible illness. I know the masculine nature of men makes it difficult for them to talk about it. No male wants to come across as weak but by opening up on these things, it makes you the opposite! There’s plenty of men fighting these conditions out there who battle in silence, when there’s so many people who could benefit from hearing your story. Your strength will be passed on to the person reading who may also be struggling to someone living with a bladder/bowel condition.

Don’t lock yourself in the dark, there’s light at the end of every tunnel.”

You can find out more about Crohn’s Disease by exploring the bladder and bowel website where we have information sheets that you can download, and real life patient stories.

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