Jim has had chronic pancreatitis for nearly 14 years. This is his story.
I’m James, but everyone calls me Jimbo. I’m 45 years old and I’ve had chronic pancreatitis for nearly 14 years. I’m a real chatterbox too! I also don’t do things in halves, I’m an all or nothing kind of person.
My first pancreatitis symptom was abdominal pain. The first thing I’d like to convey to whoever reads this is only fellow sufferers will know the pain and difficulty of pancreatitis. I had to wait five years to see a consultant to finally get a diagnosis. Five years of pain and suffering without any support. When I was finally seen by a consultant, they concluded I had chronic pancreatitis caused by alcohol.
My consultant told me he’d stop seeing me if I didn’t stop drinking. As an alcoholic this is extremely difficult. I’ve had a troublesome upbringing which has led me to drinking. I couldn’t just stop. Anyone who deals with addiction will hopefully understand this.
I’ve spent nearly 14 years living with pancreatitis. Over the years I’ve been to hospital at least 50 times staying in for 3 days or more because of the pain I’m in. I’ve requested to not be given opioids when I’m admitted. After 10 years of this as a treatment, it doesn’t work for me. If I go in now, I’m put on a drip to rehydrate. Unfortunately, though, it’s just a waiting game until the next time I have a flare up. I also have seizures because of my pain.
The excruciating pain I’m in has led to the breakdown of my relationships. I’ve been married and had 3 kids with my wife. I’ve also had a 10-year relationship too. My kids are my world. But I believe I’m impossible to live with. I am struggling being an alcoholic, struggling with my mental health and the pain I’m in because of pancreatitis means it’s really hard for me to maintain relationships. I live a solitary life due to pain.
I ended up leaving both of my long-term relationships. I walked out the door of the family home I shared with my partner of 10 years, and this is how I ended up homeless. I was offered shelter by the council but in the end the streets were better than that accommodation if I’m honest. I spent four years on the street. Being homeless and having chronic pancreatitis wasn’t easy. I managed at one point to register with a doctor’s surgery but because I was homeless, they always thought I was just after medications and drugs. When I have flare ups the most important thing for me to do is stay hydrated. When I was homeless, not suffering from a pancreatitis flare up, I was probably dehydrated already. My biggest battle during a flare up whilst homeless was to not guzzle any water I found. If I drank it too quickly, it would just come straight back up. I started finding plastic milk bottles and filling them with water, I’d use a pin to prick a little hole at the top so I could only have small sips at a time.
For me, the best year of my life was whilst I was homeless in Plymouth. I’d bring YouTube music up on my phone and with the other people who were homeless in the area, we’d pass around my phone, and everyone would play their favourite song.
I’m still waiting to see a dietitian. I believe this will really help me. I also think any one with pancreatitis should be able to access one. Unfortunately, the only appointment I’ve been given is with a hospital twenty miles away. I don’t drive and it’s a nightmare to get too. It feels like another step back in my journey.
I reached out to Guts UK a while ago, I’m now lucky enough to be a part of a focus group for pancreatitis research. The researcher is looking at ways to improve the patient pathway for nutrition. I can’t stand the idea of others being in pain so anything I can do to help others is what keeps me going.
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is dedicated to finding an effective treatment, a cure for this misunderstood and underfunded condition. We are building a community affected by pancreatitis, comforted in knowing they’re not alone.