Happy Crohn's & Colitis Awareness Month

Disclaimer: Haru is not a real doctor, please consult your physicians with any questions.
Haru encourages everyone to do their own research and ask questions.

Hey! It's Rosie again,

    The month of November is Crohn’s and Colitis awareness month. I don’t have Colitis, but when I was 14 I was diagnosed with Crohn’s disease so I thought I could share my experiences and some things that I’ve learnt along the way. 

Let’s dive right in shall we,

What is Crohn’s disease?

    Crohn’s is classified under the umbrella term Inflammatory Bowel Disease (IBD). As the name would suggest this disease causes inflammation in various areas of the digestive tract; anywhere from the mouth to the anus. Inflammation in the Gastrointestinal tract can cause a variety of symptoms that we will go over in just a second. Crohn’s disease can affect people of any age, though it is most likely to presents itself between the ages of 20-29. However, in 1/6 of people, it will develop before the age of 15, like in my case.

    So now let’s go over some symptoms of this disease: Abdominal pain, nausea, vomiting, fever, chills, diarrhea, bloody stools, weight loss, stunted growth, fatigue or severe tiredness, anemia, arthritis, skin rashes, ocular inflammation, and other complications could arise that require surgery like fistulas or abscesses. Sometimes sections of the bowel become necrotic and need to be removed. In most cases, the diseased section of the bowel is removed and the healthy sections left are attached, this is called anastomosis. If this is not possible the intestines are rerouted to the skin where an external pouch is inserted; this is known as a stoma. If the small intestine is attached to the bag it is called an ileostomy, if the large intestine is attached to the bag it is known as a colostomy.

A brief history of Crohn’s

    The exact date of the earliest descriptions of Crohn’s and Colitis are debated, but we do know that throughout history there have been reports of diarrhea, bowel pain, and inflammation and that both the ancient Greeks and the ancient Chinese both described treatments to manage symptoms that modern physicians believe to have been caused by Crohn’s disease. We also know that sometime between 1682-1771 an Italian anatomist who many people view as the father of modern anatomical pathology, Giovanni Battista Morgagni, noticed and described inflammatory bowel disease. However, Crohn’s was only recognized as a distinct disease in 1875 and was only officially first described in 1932. Burrill Crohn, Leon Ginzberg, and Gordon Di Oppenheimer were the first three doctors to document that this was its own disease through data they collected from 14 patients.

    To be completely honest not much was understood about IBD, there was no cure and very little research was being done. That is until the year 1956 when a woman named Suzanne Rosenthal was suffering horribly due to IBD. Her husband, Irwin, furious and extremely frustrated with the lack of research in the field decided something needed to be done. This led their family to explore ways to fund research in Crohn’s and Colitis. At the time Suzanne was receiving care at Mount Sinai’s hospital in New York, during that period another family in the same unit was going through a similar struggle. The patient was a 13-year-old boy named Michael Modell, and he and his parents Shelby and William were also trying to fight the same battle. The families decided to team up to fight for a cure. Thankfully they did because the foundation they started has played a huge role in every major breakthrough in IBD to date. One of the biggest breakthroughs was discovering that TNF-blockers help to reduce inflammation which can be helpful in people with diseases such as ulcerative colitis, Crohn’s disease, Rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis and plaque psoriasis. TNF-Alpha inhibitors help minimize the intensity of these diseases. They created several groundbreaking biologic therapies such as Infliximab (Remicade) and Adalimumab (Humira).

    There are 5 different types of Crohn’s disease. Which are Ileocolitis, Ileitis, Crohn’s Colitis, Gastroduodenal Crohn’s, and Jejunoileitis. Some people can experience more than one type of Crohn’s disease at the same time.

1. Ileocolitis

Ileocolitis is the most common form of Crohn’s disease, it affects the large intestine and the end of the small intestine. 40% of Crohn’s patients have Ileocolitis.

2. Ileitis 

Ileitis is characterized by the inflammation of the ileum, the narrowest part of the final section of the small intestine.

3. Crohn’s Colitis

Crohn’s Colitis also known as Granulomatous Colitis, only affects the large intestine.

4. Gastroduodenal Crohn’s

 Gastroduodenal Crohn’s presents itself in 1/3 of young patients with Crohn’s. Ulcers develop on the stomach and the first part of the small intestine. As a result, this area becomes inflamed.

5. Jejunoileitis

Jejunoileitis is the least common type of Crohn’s disease. It affects the upper half of the small intestine known as the jejunum.


    Here are some people throughout history who modern-day physicians believe may have had Crohn’s. Fear Not! Us Crohnies are in good company.

Alfred the Great, also known as the Wise-elf, King of Wessex and the Anglo-Saxons (847-899). Thanks to the detailed notes his biographer Asser left behind, we know what symptoms ailed him and that he suffered greatly throughout his life. There is also evidence to suggest that his grandson, King Eadred, may have inherited his ailments. 

Louis XIII, the King of France (1601-1643). It is recorded that upon his death they discovered that his intestines were inflamed and ulcerated, which would have made digestion near impossible.

Prince Albert, Consort to Queen Victoria of the United Kingdom of Great Britain and Ireland (1819-1861). In August of 1859, Prince Albert began experiencing severe abdominal cramps and fell gravely ill.

Charles Darwin, an English naturalist, biologist, and geologist, was best known for his contributions to science due to his theory of evolution (1809-1882). His work took a toll on his health, and when he became stressed due to approaching meetings or due dates for his academic journals his health would decline and he would be bedridden for days with abdominal pains. He was repeatedly incapacitated due to these pains. He also suffered from a long list of other symptoms including vomiting, tremors, tachycardia, fainting, and severe anxiety.

    Despite their struggles, these people still accomplished things and have been written of in history books. They went after their goals. We still don’t know much, but we understand more than we did during these four individuals’ lives.


    Specialists still don’t know what causes Crohn’s, but they suspect bacteria in your gastrointestinal tract can mistakenly trigger your immune system to attack healthy cells. Because we don’t fully understand it, there is no way to prevent it, and there is no cure as of yet. There are however different ways to manage some symptoms through a combination of physical activity, dietary restrictions, and medications.

    Everyone’s body will react differently, and over time things change and we need to adapt and change our course of treatments as well. For me, the telling symptoms were that I developed ulcers in my mouth, throat, stomach, duodenum, and throughout my large and small intestines. One afternoon I received a call while I was on the bus on my way home from school, after many endoscopies and colonoscopies, the results were in and I was diagnosed with Crohn’s disease. I was prescribed Pentasa and had an appointment with a nutritionist. I was also given vitamin B12, some research has been done to show patients with Crohn’s have low B12 but nothing has been conclusive, the reason I take B12 is primarily due to me being a vegetarian. The Nutritionist went over how some foods may trigger worse symptoms than others. They explained how by collecting data on what I eat and how I feel I may be able to find a way to manage the pain and some symptoms. She gave me a package of papers titled Low Residue Diet. It was supposed to be low insoluble fibres and low irritants. Some of the general guidelines included pretty basic things like Chew your food, which made me chuckle. There were a few others like eat small amounts more often, 3-5 small meals with 2-3 snacks; making sure to eat every 4-6 hours (way to make me feel like more of a hobbit). Limit Spice, Alcohol and Caffeine intake. Limit foods that are high in insoluble fibre such as fruit and vegetable skin peels, nuts, and seeds. Avoid high-fat foods. Cooked fruits or smoothies are good, but I should avoid all dried or candied fruits. They explained how Tomatoes are high in acidity so to limit my consumption of them. I was also instructed to avoid corn altogether. Instead of buying regular eggs I was told to try pasteurized liquid egg whites and was counselled to mix it with some soft tofu and use it in a smoothie. They suggested lactose-free milk because after long-term diarrhea some people develop lactose intolerance (Like Charles Darwin).

   I made sure to keep on top of my diet and I catalogued everything, I was my own science experiment which was kind of amusing. Along with diet I also made sure to keep my body moving. Not only is it helpful for arthritis which we spoke about in our Arthritis Day Post, but it also helps get your intestines moving and pushes everything along its merry way. After a while, my medication wasn’t as effective and my doctors decided that due to my autoimmune illness, my arthritis, and my Crohn’s that they would put me on Humira. Humira is a biological medication. Your dose can change depending on your needs and what your doctor sees fit. I take one pre-filled syringe every 7 days. The medication is delivered to me once a month and I get one box of 4 pre-filled syringes. They have to be kept refrigerated until they are used and I administer the injection myself. The injection rotates every week. Left abdomen, Left leg, Right leg, Right abdomen, Repeat. At the moment the combination of exercise, dietary restrictions and medications are working for me and I’m managing my symptoms.

    There was a time when my symptoms were very out of control and I had to find any way I could to try to make it even a tiny bit easier. Mandy always said it’s better to be safe than sorry and she suggested the idea of carrying around a small bag with all the essentials I would need. I’ll give you guys a little rundown of what I have in my Chronic illness kit:

1st - Liners and Pads, and an extra pair of underwear: Having Crohn’s has shown me that accidents happen so it’s much better to come prepared.

2nd - Medications: I carry a medicine bottle with a mix of Extra strength Tylenol, Benadryl, Tums, Robax, and some anxiety meds.

 3rd - Adhesive Bandages: Band-aids can help in a variety of situations, such as protecting any ulcers so there’s a layer covering them from rubbing against clothes.

4th - Barf-Bag: Which is just a plastic bag with NO holes and also a large ziplock with a strong locking closure. I have had situations arise where I suddenly become very nauseous and vomit. This has happened on sidewalks, in front of school, on my way home, and on public transportion… A bag is great so you don’t leave a huge mess everywhere, just throw up into the bag and once you’re done tie it off tightly and securely and place it in the ziplock and close that too. Tuck the bag out of sight and dispose of it at the first trash bin you spot. This tactic is much better than passing out on a bus and waking up on the floor with vomit all over you and a crowd of strangers staring at you from above….

5th - Epipens: I carry two Epipens because I’ve recently developed some new food allergies

6th - Inhaler: I have my asthma pump. Because Asthma.

7th - Mini USB charged Fan: I carry a mini USB charged fan. I get heat flashes and faint, using a fan helps prevent the fainting.

8th - Snacks: Snacks can be really useful when you feel faint and need a bit of sugar or energy.

 9th - Water bottle: Gotta stay hydrated, and it also helps when I feel faint.

10th - External battery pack: In case my fan or phone gets low on battery I can charge them. Having my phone charged is important so I can update Mandy on how I’m doing in case of a medical emergency.

All these items help me, but they are cumbersome which makes leaving the house a big job. And even though I understand what Darwin is trying to get at in his quote:

 “Even ill-health, though it has annihilated several years of my life, has saved me from the distractions of society and amusement.” – Charles Darwin

 I disagree with one aspect.

 Crohn’s may stop me from the occasional social outings, but it has never stopped me from seeking new sources of amusement and it never will. Crohn’s is definitely one of the messier and at times more embarrassing chronic illnesses to have, and that’s okay. It will feel frustrating at times, the important thing is just to never stop and always keep your chin up.
 
Thank you for joining Haru for his Health and Recovery Unit Segment. We hope you found it informative or helpful, we can’t wait to speak to you all again! Happy Crohn’s and Colitis awareness month.

~    Stay Obsessed