No one can fully understand another person’s pain.

Before my son’s accident, I thought people in a wheelchair just sat down a lot. I had no idea of the endless quiet agonies and frustrations they endure.

But at least people notice the wheelchair — what if a person looked utterly healthy, young, slender, beautiful — how could we know what was happening inside?

Inflammatory Bowel Disease (IBD) is singularly vicious. But nothing shows, except they may need the bathroom (literally) a couple dozen times a day.

If an IBD sufferer gets tired of explaining their situation and says, “Oh, it is just stomach trouble”, that is their decision, of course. But to suffer in silence may trivialize a deadly condition. Some body processes are embarrassing to discuss: so much so that (in cases like colorectal cancer) people may actually die before they talk to a doctor about it. By waiting too long, the disease may worsen beyond repair.

Also, there is the matter of research funding. If patients suffer in silence, decision-makers may think everything is okay, and the money goes to a more vocal constituency. No funding, no cures.

How bad is Inflammatory Bowel Disease? (Note: there are several diseases under that term, primarily Crohn’s Disease or ulcerative colitis. My information is for Crohn’s.)

If the food goes through the body too quickly, you may need the bathroom literally 20 times in a day. The nutrients of the food are not absorbed, so that you will lose weight in an unhealthy way: muscles wasting, like slow starvation.

Like multiple sclerosis, IBD is an auto-immune disorder. The body fights itself. Ulcers bleed — open wounds — throughout the intestine. So much blood can be lost that the person faints. Fatigue is a constant companion. Just standing up can be too much. Accompanying arthritis can be so severe you cannot lift your arms to comb your hair. Diarrhoea, constipation, and stomach aches, like being punched in the gut. It can even lead to cancer.

One and a half million Americans suffer Inflammatory Bowel Disease.

But the California Institute for Regenerative Medicine (CIRM) is fighting back, led by scientists like Ophir Klein — and inspired by patient advocates like Rachel B.

 

Dr. Ophir Klein, UCSF

 

I heard Rachel B., then 16, speak side by side with Dr. Klein at a meeting of the ICOC (Independent Citizens Oversight Committee) California’s state stem cell board.

At age 8, Ms. B. went to the hospital with hip pain. At first, the doctors thought it was something in the bones. It would take six years and an estimated 241 medical treatments, as hospital staff struggled to figure out what was wrong, and what could be done to help.

You can hear her speech at: https://www.cirm.ca.gov/our-progress/video/living-ibd-inflammatory-bowel-disease-rachel-bonner-hope-crohns

California is supporting Dr. Klein (no relation to CIRM founder Bob Klein) with financial grants to attack IBD.

His weapons of choice? Stem cells and organoids. What is an organoid?

Remember Paramount’s classic horror movie, “THE BLOB”? It was Steve McQueen’s first starring role, as a teenager who fights a jelly-like monster from outer space. The blob grows and grows until it eats a movie theater. (Scientists finally scoop it up and drop it off at the North Pole, where it was too cold to grow.

 

“THE BLOB”, from Paramount Pictures

 

But what if we had our own personal blob, very tiny, and it was our friend, and could regrow wounded parts of the body? Organoids are mini-blobs, tiny specks of living tissue. They can be used to model diseases to test treatments against. Also, they can be implanted in the intestine, where, it is hoped, they will grow new and healthy tissue to heal the wounds. (Did you ever notice how similar the words “heal” and “healthy” are? When the body can heal itself, it is healthy.)

“The objective of the project is to test regenerative medicine approaches using human embryonic and adult stem cells in the treatment of inflammatory bowel disease…”

— https://www.cirm.ca.gov/our-progress/awards/stem-cell-therapy-inflammatory-bowel-disease

Because of Proposition 71, the patient advocate-led initiative, there was grant money for Dr. Klein to fight the disease with science. But what if there had been no Prop 71, no patient advocate action?

The struggle is hard, and we, the patients and families must lead it. We are the 46%, people with one or more chronic diseases.

The young speaker for CIRM organized a group and a website.

https://www.hopeforcrohns.org/

At that website, are words that sum up what we must do.

“For the first few years of my Crohn’s lifestyle, I was embarrassed to talk about it. I didn’t want to share my struggle, the hardships of having Crohn’s. But then I realized that talking about it is important, because for every one person you tell, they go and tell three more people. And that means four more people know about (IBD) and the conversation will just keep spreading.

“As I go into my tenth year with this Crohn’s lifestyle, I think about the doctor who told me when I was (a child) that I would only have eight or ten more years to live. I think about what people who told me I couldn’t do because of my Crohn’s.

“However, the best part about having a stubborn resilient disease is that it teaches you to fight and to be stubborn and resilient yourself. There have been plenty of times I wanted to put my boxing gloves away. You just have to tell yourself that for every “can’t” you are told, or obstacle you are presented with — show them a million reasons why you can and will live your life.”

Rachel B.

September 22, 2016

Don C. Reed is the author of the new book “CALIFORNIA CURES: How the California Stem Cell Program is Fighting Your Incurable Disease!”

Visit his website at www.stemcellbattles.com