IBD is a Complicated Illness: Beware of Anyone Who Tells You Otherwise

IBD is a complicated illness.

The best scientific and medical minds in the world have been studying it for decades and still don’t know what causes it, let alone how to cure it.

We have better treatments now than we did twenty years ago, but even the scientists who spent years developing them don’t really understand why they work.

I asked one of the leading lab technicians at one of the world’s top pharmaceutical companies once how the anti-TNF drugs work and he said “We only know that they work, we don’t know why they work.”

Crohn's is a complicated illness

Living with Crohn’s for 25 years, I thought I at least knew what it was. I fancied myself an expert. But as I started to meet other Crohnies, I realized that everyone has their own unique version of this disease.

Some of us have it in our large bowel only, some in both the large and small. Some of us have perianal disease, others have mouth ulcers and skin rashes. Some of us have joint and skin problems, others have eye problems. Some have all of the above.

I realized that I knew what it was like for me to have IBD. I didn’t know what it was like for anyone else.

IBD is a complicated illness.

Different treatment options work for different people

Each of us responds differently to medication. The drug that puts one of us into remission might give another seizures. One of us may be on steroids for years with no adverse effects, while another, on the same dose, develops osteonecrosis. One of us may gain weight, while another loses it. A percentage of us will develop terminal cancer from the drugs we are taking to try and get healthy. We have to confront these statistics each time we make the decision to start a new treatment.

I met one young girl with Crohn’s in her liver, who had to have a transplant at the age of 18. I met a young man who’d needed a hip replacement after his bones decayed. He was 22. I’ve heard many similar stories of suffering and hardship at the hands of this horrid illness, but never the same story twice. Each one of us has our own unique tale to tell.

IBD is a complicated illness.

Advice and tips from others who don't understand IBD

And yet almost every day we come across a post, or read a comment, or find ourselves in a conversation with someone who thinks otherwise. Someone who thinks they have it all worked out. Someone who has read one article in a magazine, and now fancies themselves an expert. We meet strangers with no medical training or qualifications, with no experience of living with Crohn’s - not even for a single day - who try to tell us what we should and shouldn’t be doing. Who we should be listening to. What we should be eating, taking, thinking, and avoiding.

We get told about new diets. About cleanses. About treatments that involve live worms or ancient herbs. We get told to chill out and smoke weed, or toughen up and pump iron. We are tagged on posts by David Avocado Wolfe. We are warned about “Big Pharma”, and how they have bribed all our doctors into lying to us in order to keep us sick.

Sometimes these people aren’t strangers to us. Sometimes they are our best friends, our loved ones, our nearest and dearest. Their advice is given with the best intentions and with the most sincere of hopes: the hope that there is a simple solution to all our suffering that has been hiding in plain sight all these long years.

But IBD is a complicated illness.

Crohn's and colitis are not simple to treat

It isn’t going to have a simple solution. It isn’t a simple disease.

That’s why we go to actual experts, with real qualifications, who make educated decisions based on legitimate studies, conducted in top labs, by brilliant researchers, using cutting edge equipment. And talk to actual patients, who have lived with this illness for decades. Because to do anything less would be disrespectful to ourselves.

IBD is a complicated illness.

When it comes, I suspect the cure will be an individualized one. It will be elegant, bespoke, tailored. It will fit us like a fine suit. Until then, we just have to keep doing the best we can with what’s available off the shelf.

IBD is a complicated illness. I keep repeating this line because it gives me comfort.

It gives me comfort to know that I am facing a diabolically complex problem because that makes it okay for me to be constantly asking for help. If it was simple, then I could take care of it myself, and so could you. The fact that it isn’t simple is why we need each other. The fact that it’s complicated is why we need pages like this, and support groups, and government help, and the understanding of our family and friends, our colleagues and co-workers, our bosses and teachers. The fact that it’s complicated is why we keep writing about it, and talking about it, and reading about it.

IBD is a complicated illness. Take comfort in that.

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