Navigating a life-changing diagnosis like multiple sclerosis (MS) is full of hurdles, especially when it begins to affect your bowel health. For a long time, I struggled in silence but I eventually found a new sense of freedom through stoma surgery.
In this blog, I’ll share my journey from painful bowel symptoms to life with a colostomy bag. I hope my experience with the ModaVi bag shows that surgery isn’t something to fear; it can actually give you your life back.
My multiple sclerosis diagnosis
My journey started on a Monday morning. After a busy weekend of work, I noticed my right hand was completely numb. I assumed I’d just trapped a nerve, so I pushed through the day. By the end of my shift, the numbness had reached my shoulder.
The next morning, the right side of my face and head were numb too. Over the next six months, the symptoms snowballed: vertigo, a weakening right leg and optic neuritis. Finally, after seven months of scans and lumbar punctures, I was diagnosed with multiple sclerosis at the age of 26.
My MS struggles
A few years later, a relapse brought new challenges: bladder leakage and difficulty opening my bowels. Being a man, I didn’t want to talk about these struggles. I persisted in silence for months, despite the tearing, bleeding, and unbearable pain.
Eventually, I reached my breaking point and spoke to my MS nurse. We tried transanal irrigation, but it wasn’t the solution I needed. After many discussions with my bowel specialist, we decided a colostomy bag was the best path forward.
Waiting for my colostomy surgery
The idea was daunting, but I was eager to end the daily pain. Then the lockdown hit; I went from being eighth on an emergency waiting list to waiting a year and a half for my operation. During that time, I received a sample pack of four different bags. One stood out immediately: the ModaVi bag. When I found out it came in black, I was sold. It looked different and that aesthetic choice mattered to me.
Life after colostomy surgery
I’ve had my stoma for four years now and I haven’t looked back. The ModaVi bag is the only one I’ve ever used. It sticks well, it’s easy to apply and it fits every aspect of my life. Most importantly, it ended the pain that had taken over my world.
My top tips:
- Don’t suffer in silence: if you are experiencing pain or tearing, speak to your MS or bowel nurse. There is no prize for “toughing it out”.
- Try before you use: use the time before surgery to handle different samples. Finding a bag that looks and feels right for your body makes a huge difference.
- Aesthetics matter: don’t be afraid to ask for different colors or styles. Having a bag like the black ModaVi helped me feel more like myself.
If you’re facing the prospect of a colostomy, know that it is ok to feel daunted. The journey isn’t always easy, especially when unexpected delays like a lockdown get in the way. However, the relief from pain and the return to a normal life is worth it. Four years later, I don’t even think about trying another bag. I’ve found what works for me, and I’ve regained the freedom MS tried to take away. You’re not alone in this, and there is a community (and the right products) waiting to support you.
