Lessons Learned From a Life with Crohn’s Disease: How to Survive and Thrive
This article was originally scheduled to be published in Real Clear Life.com but it was pulled with no explanation the day before it was scheduled to go up. I tried and tried and tried to find a home for it somewhere else but none presented itself, so here at last is my essay/journalistic story on Crohn’s Disease.
*Warning: If frank medical diagnosis of intestinal issues bother you, then this may not be the story for you.
I’ve had Crohn’s Disease for a little over 20 years and I was too embarrassed or scared to talk about it for the first 10 of those years. I noticed the first effects of the disease when I went away to college at 19 years old. I was living on junk cafeteria food and for the first time in my life, I started to have diarrhea regularly. I chalked it up to too many soggy hot dogs and didn’t think anything of it. It just became part of my life. I didn’t have health insurance or a primary care physician, and I couldn’t tell you when I’d seen a doctor before then. I just accepted the regular bathroom visits as a new part of life that I was unfamiliar with. Taunts from friends to “light a candle” when I was in the bathroom or going in there after me and asking “What did you eat?” became a regular occurrence.
I was living at home, and my longer than normal restroom trips started to attract the notice of my mother who did all she could do to help with healthy eating advice and dietary supplements. Sadly, I didn’t take the problem seriously, and when I was out of the house I ate fast food and drank soda constantly and seldom bought vegetables. By my late 20’s I began to have intense bouts of intestinal pain that usually lasted for just a few moments and put me on the floor in agony. Once or twice a year the pain would last for much longer, and I know it sounds hard to believe, but I still didn’t visit a doctor until the urging of my family became too much to avoid.
I had my first colonoscopy of many to come, and the doctor said he was about 95% certain I had Crohn’s Disease, and strongly recommended I take Remicade for the areas of inflammation he saw in my gut lining. I read about all the possible side effects which included a laundry list of things to avoid in life like nausea, vomiting, and dizziness and I was more scared of them then I was the problem I was living with. I declined treatment thinking I could beat it with a healthy diet, but quickly lapsed back into old habits. I fooled myself into thinking I was healthy which culminated a few years later with a massive attack in my intestines when the inflammation that had been building up for years ruptured my colon when I was asleep. Shockingly, I did not immediately call 911. I had been living with so many great pains over the last few years that I thought this was just another one of those and it would pass. Eventually, after three days of constant pain while in bed nearly the entire time, I visited a local physician’s office thinking he would prescribe me pain medication or something to calm my stomach down. He took one look at me, and felt my fluttering pulse and said: “You’re a very brave man.”
I was rushed to the emergency room and the operation that saved my life (known as an ileosotomy) redirected my colon to exit out of a hole they created in my stomach instead of my anus. I stayed at the hospital in agony for three weeks until they finally agreed to let me move back home with my parents. For the next six months my bowels emptied into an ostomy bag that I had to physically dump into the toilet and change regularly. The inflammation that had caused me such trauma was arrested from disuse and the holes in my intestines healed and my ileostomy was reversed in a procedure called a “takedown.”
In the years after that, I went from good to bad again and had several more hospital visits and uncomfortable tests called upper and lower Gi. I was at the end of my rope, and I finally relented, and agreed to take the doctor recommended medication.
After various tests and visits to the gastroenterologist office during which I had only seen a PA (physicians assistant), my doctor entered the exam room and said “You’ve got a severe case of Crohn’s Disease there’s Humira, Cimzia, and Remicade. Which one would you like to try?” I was a bit dumbfounded. This was a doctor who was supposed to have all the answers, and he was essentially offering me an uneducated guess at treatment.
So what is Crohn’s Disease anyway? Simply put, it’s a disorder that causes chronic inflammation of the digestive tract which then loses its ability to properly process food, water, and waste resulting in ulcers, diarrhea, cramping, pain and a very long list of other unpleasant things. Crohn’s and Ulcerative Colitis, a similar disorder affecting different parts of the intestinal tract, are grouped together and termed Inflammatory Bowel Disorder (IBD) and many of the same drugs that reduce inflammation are commonly prescribed for both.
Doctors say the disease is incurable, and that the best you can hope for is to live symptom-free for several years until your next outbreak or flare up as they call it. I’d list the statistics for you but they are rather bleak.
According to the Crohn’s and Colitis Foundation as many as 780,000 people in the United States have Crohn’s Disease. There is no conclusive research that tells us what causes it although it is known that it runs in families and is more common in those of Eastern European descent. If you think you may have this disorder and are stressing out about it right now — don’t! Stress is a major factor in aggravating the symptoms. It is beneficial to find your path to relaxing through prayer, meditation, or just relaxing and recreating. There are a variety of types of drugs used to treat the disorder, and the strongest type “biologics” are immune suppressors. They are generally very expensive, but there are programs that will provide them for free depending on income.
I wanted to know more about Crohn’s Disease, so I talked to Dr. Sushila Dalal, a renowned gastroenterologist from the University of Chicago Medicine.
I told her I was taking Humira, an injectable biologic, and it had eliminated any stomach pain from digesting food, but I was still having regular diarrhea and my digestion was so bad that I was waking up constantly in the middle of the night hungry. I had to eat to go back to sleep.
She told me that determining why symptoms were occurring was very important. Just because you’re having regular diarrhea doesn’t mean you have an IBD disorder. Doctors need to have an open mind to ensure that all possibilities are evaluated. Even if you have a Crohn’s diagnosis there could still be something else causing the diarrhea.
I asked her the hard question about why my doctor had offered me a choice of three treatment medications, and she told me they didn’t have head to head data comparing efficacy so doctors can’t always necessarily recommend one drug over the other. Humira and Cimzia are injectable, and Remicade requires an infusion at the doctor’s office. Some people can’t always come back or may not want to visit regularly for treatment so it’s very much up to the patient.
She explained the frustration with not having clinical indicators that can tell what drug you should take, and that essentially we are stuck with trial and error. She hopes that eventually, they can find out what triggers the Crohn’s disease instead of playing catch-up after the damage has already occurred. Her goal with treatment is to get the patient to clinical remission by looking at objective markers of healing where the inflammation is located.
One of those specific ways they’ve been looking at markers of healing recently is by use of a fecal calprotectin, a stool test. Calprotectin is a protein made by one type of white blood cells called neutrophils, and when there’s inflammation in the intestine white blood cells attack the wall of the intestine and calprotectin comes out in the stool.
I should add that sometimes Crohn’s sufferers are truly desperate for relief and willing to try anything which sometimes leads them to try a fecal transplant. Yes, it’s exactly what it sounds like. Poop from a healthy donor is inserted into the body of a nonhealthy person. Sometimes this is done under doctor’s supervision, and some people even do this at home. Many people report remarkable results from this new therapy, and Dr. Dalal thinks it’s a reasonable area of study as well.
Regarding other alternative fields of Crohn’s Disease, she seemed skeptical of Cannabis results currently seeing as how there isn’t enough good data to see if the use of it is actually treating the inflammation or just changing the symptoms. Despite this, thousands of patients that use medical marijuana and Cannabis for Crohn’s and other inflammatory conditions swear by its effectiveness in reducing or eliminating their symptoms. However, the medical field will be doubtless slow to accept Cannabis as medicine without extensive drug trials which don’t seem very likely while it is currently a Schedule 1 drug in the United States meaning the government considers it to have “no currently accepted medical use”.
This leaves many sufferers of Crohn’s Disease caught in the cracks when traditional treatments fail them. They are forced to suffer and sometimes die because the drugs don’t work for everyone. Coltyn’s recent story in Healthline is heartbreaking and real. He spent years getting sicker as none of the doctor’s trial and error methods were doing anything to help and the side effects seemed worse than doing nothing at all. Coltyn’s parents became convinced that they should try cannabis and after being examined by two different doctors he became the first medical marijuana patient in Colorado. After experimenting with dosages with the intention of never getting high from it, Coltyn’s Crohn’s symptoms began to vanish and Coltyn became a powerful advocate and symbol for the growing medical marijuana movement in America. Everyone in America should all have access to the same medicine. You shouldn’t have to cross state lines to get relief from suffering.
I also asked Dr. Dalal about the use of diet in eliminating inflammation in Crohn’s Disease, and she said it’s an important area of study because a healthy diet rapidly changes the microbiome of the gut: the bacteria that help digest food.
I was extremely interested in using diet to combat inflammation so I called up a doctor actively working in the field, Dr. David Suskind of Seattle Children’s Hospital.
David was forthcoming in addressing the microbiome in the gut right away calling it a link to addressing Crohn’s and other medical conditions as well. His findings show that diet does decrease the inflammation and help people get back to clinical remission. David does a lot of research using the Specific Carbohydrate Diet (SCD), a restrictive diet originally used to treat celiac disease that severely limits complex carbohydrates and sugars. He said in January they’re having a multi-center study across 12 pediatric clinics with SCD and modified SCD in order to prove to the medical community that diet is an effective therapy for many. He’s hopeful that they will be able to hone in on the cause of IBD, which is the microbiome, and how it interacts with the immune system. You can follow along with their progress and learn more about SCD and how to integrate it into your life at nimbal.org. Be advised however, that trying a SCD or any other type of restrictive diet for health requires an immersive life change and you won’t get the results you want unless you stick with it.
David described the SCD as producing more healthy bacteria in the gut that help ward off infection. Consequently, if you eat a lot of junk processed food you’re going to get bad bacteria that causes dysbiosis, which is an imbalance in your gut and is the reason that we see a lot of autoimmune disorders today (of which Crohn’s Disease is a part of).
He was quick to point out that the drugs traditional gastroenterologists use are good when they help people, but they are very expensive, and sometimes produce unpleasant side effects. Dietary therapy may work for many people and has fewer potential side-effects than the immune suppressant drugs.
I am actually one of the people that dietary therapy has helped. About a year ago, I did a 30-day diet similar to the SCD at the Chronic Conditions Center in Williamsburg Virginia under Dr. Robert Kuhn, a chiropractor who takes a wellness-based approach to helping people with various conditions through a combination of diet and physical therapy. At the end of 30 days, I felt as good as I have ever felt. I had no diarrhea or pain and I felt free and energized for the first time in a long time.
If you need more proof that diet can dramatically make a difference in the life of a Crohn’s sufferer, you should read about a man named Jordan Rubin’s incredible story and how he healed himself of all symptoms of Crohn’s Disease approximately 20 years ago through his version of dietary therapy.
There is hope out there if you are suffering from IBD. Don’t try to ignore it like I did, or think you can power through it. It’s a tough thing, but you can come out on the other side of this. You can get help. Go see a doctor, but don’t be afraid to try other options as well. There are support groups that you can talk about your problems with if you’re too embarrassed to talk about it in public. I can understand. I was afraid for such a long time. A diagnosis of IBD is not your fault, and you don’t deserve to suffer by staying silent about your problems as disgusting as other people may think they are. It may sound silly, but it’s true: a friend who doesn’t care about your shit isn’t a true friend.
You are not alone.
