Learn these quick facts about IBD. So when someone asks you about Crohn’s or Colitis, you have an answer. You can also print a version of this to share with your loved ones, or strangers, or whoever.
So, tell me about Crohn’s/Colitis.
Crohn’s and Colitis are Inflammatory Bowel Diseases (IBD), which is a type of autoimmune disease.
What’s an autoimmune disease?
Basically it’s when your immune system attacks your own body. In this case, it’s attacking the digestive system. An autoimmune disease means it’s more of a systemic disorder- it’s how your immune system cells are programmed, versus a food allergy or a problem with how the digestive system functions, like with irritable bowel syndrome (IBS).
Wait, what does that mean?
In someone with Crohn’s or Colitis, the immune system incorrectly tags some elements of the digestive system as “bad”, normally reserved for infections like a cold or the flu. The immune system is trying to protect the body, so it attacks the person’s own digestive system, because it’s confused.
This can create turmoil within the digestive tract. Imagine a civil war between two systems of your body. All this stress creates ulcers and inflammation, and a pretty bad environment within your bowels. When normal stuff like food, water, and nutrients pass through, they encounter this war zone, and try to exit the body as quickly as possible, which is how sudden, urgent bowel movements occur. Sometimes they exit before the digestive system can do it’s job, like absorbing the nutrients and water, and solidifying the waste.
The main differences between Crohn’s Disease and Ulcerative Colitis include the following: Crohn’s can be anywhere in the GI tract from the mouth to the anus, and inflammation can be “transmural” – meaning it can affect all layers of the bowel wall. Crohn’s inflammation is not continuous, and it is often described as having a “cobblestone” bumpy appearance. Patients of Crohn’s tend to experience more complications such as fistulas, strictures, and obstructions. In Ulcerative Colitis, the inflammation is exclusively in the colon (large intestines). It is generally in one continuous patch, and has a smoother appearance than Crohn’s. However, much of the experience of these two diseases is very similar, which is why they are often referred to collectively as IBD.
How did you get it?
The cause of IBD isn’t known right now. There’s evidence of everything from genetics to antibiotic use to the cleanliness of our living environment. Sometimes it’s triggered by stress or food, but those aren’t causes. Symptoms can begin at any time, and often in people under the age of 18.
What are the symptoms?
Generally, things like abdominal pain, frequent and urgent bathroom trips, blood in the stool, and loose stools are indicators that the digestive system isn’t working. These can be really intense and serious, and uncontrollable. On top of these, people with IBD often end up with side effects such as malnutrition, anemia, and other things.
Symptoms can flare, and these flares can come and go. Sometimes, patients associate flares with things like stress, seasons, or even trigger foods, but often times it’s unpredictable. People with IBD can’t simply take a pill, or avoid certain foods, and feel healthy.
Well why don’t you just [insert remedy here] and you’ll be fine?
If only it was that simple! While managing things like diet and stress, and getting exercise can help, there is no true cure for IBD. It’s incredibly frustrating to patients, and doctors, who can seemingly do everything right, and still experience symptoms. IBD affects each person differently, so some people may be able to eat salad, or run marathons, or respond to certain medications, while others may not. There is a lot still being researched, and also a lot of misconceptions out there, which is one of the reasons we’re working to spread awareness.
You mentioned medication, tell me more about that.
There are a few different classes of drugs for autoimmune patients:
- Aminosalicylates – anti-inflammatories that target the digestive system
- Antibiotics – reduce bacteria and suppress immunity in the digestive system
- Corticosteroids – stronger anti-inflammatories that treat acute flares. Prednisone is a common corticosteroid
- Immunomodulators – drugs that weaken the immune system to decrease the attacks on the digestive system and reduce inflammation
- Biologics – drugs that target proteins to block inflammation, either in the immune system or in the bloodstream.
Many of these drugs are very strong and can add their own side effects and long term risks on top of IBD symptoms. However, many patients still believe the benefits outweigh the risks, as many have found relief due to these drug therapies.
And what about surgery?
Surgery is performed on Crohn’s and Colitis patients for a number of reasons. It is estimated that up to 75% of Crohn’s, and up to 40% of Colitis patients will require surgery at one point. Digestive surgeries can resection parts of the intestines while removing the diseased parts, fix strictures (narrowing of the intestine), or even remove the entire colon. Full removal can result in an ostomy or a J-Pouch, which often, but not always, provides long term relief to IBD patients.
An ostomy?! Isn’t that for old people?
Not true! An ostomy can be a great option for anyone with severe disease, and life-altering pain. An ostomy is a general term for when the intestine is hooked up to an opening in the skin, often in the abdominal area, for human waste to exit into a bag. Many people with ostomies will tell you that it is a new lease on life, and are glad they went through with it. Learn more at the UOAA.
Wait, a J-Pouch? I’ve never heard of that!
It’s the result of a surgery that kind of creates an internal bag, or “pouch”, for excrement to pool when the large intestine has been removed. The end of the small intestines is formed in a “J” shape to hold waste and exit through the rectum. Other pouch shapes are possible, but the “J” is very common. J-pouchers often experience multi-step surgeries, including a temporary ostomy. After the temporary osteomyelitis is reversed, people can go to the bathroom normally, but just have a much shorter digestive track.
Read a J-Poucher’s take on this.
Crohn’s and Colitis can be overwhelming. They are a lot to deal with, they change your body in unexpected ways, and they affect you mentally. All of this is made more challenging by a general misunderstanding and disinterest by the general public. Because of these, and accepting the fact that your life changes forever, many patients include mental health resources as part of their treatment plan. Things like depression and anxiety are common along with IBD, and feeling things like this is perfectly normal.
This all sounds so serious! What can I do?
Thanks for recognizing that, and thanks for asking. You can help spread awareness by sharing what you just learned with someone new, and debunking some IBD myths.
You can also help by treating others you know (and there are probably more than you know of!) with respect, understanding, and patience.