What is Crohn’s Disease?

Crohn's Disease Warrior Patrol

There are many excellent medical and scientific explanations to this question but I’ve taken a more practical approach and provided the information which I think would be of most importance to a patient or their loved ones immediately after they got diagnosed with Crohn’s Disease.  Please keep in mind that Crohn’s Disease is a “broad spectrum disease” which means it can have a wide range of severity and pervasiveness in one’s life.  Finally, it has been my experience in 30 years with this lovely disease that Crohn’s can come and go and never come back again or it can come and go like your least favorite relative who has free reign of your house “for the holidays” except she comes New Year’s and leaves Christmas!!!

“Personalization” of Crohn’s makes it challenging

Crohn’s Disease is an incurable, chronic, unpredictable, autoimmune Inflammatory Bowel Disease (IBD) which typically causes painful inflammation of any part of the digestive tract, i.e., from the mouth to the anus. Crohn’s Disease may affect as many as 700,000 Americans but it is also a “broad spectrum” disease in terms of its severity and pervasiveness. This means that while one Crohn’s patient can have 10+ abdominal surgeries, go to the bathroom 50 times a day and amass 100+ hospitalizations, another may never see the inside of a hospital and the disease will never be anything more than a minor inconvenience.  The ostensibly “personalization” of Crohn’s Disease for different patients often makes it very difficult to diagnose, even harder to successfully treat and extremely challenging to manage.

Your overactive immune system attacks itself in Crohn’s

When you have an autoimmune disease like Crohn’s, your body’s immune system is unusually over-active and it mistakenly attacks itself (researchers believe this is caused by a combination of genetic, hereditary and environmental factors), causing inflammation in the gastrointestinal (or digestive) track.  This inflammation of the intestinal walls causes a “narrowing” which makes it extremely painful to “pass” food and sometimes even liquids. In some cases, the inflammation from Crohn’s Disease damages the lining of the intestine so that it cannot absorb nutrients, water, and fats from food eaten and then digested. Surgical removal of parts of the intestine can also cause this problem, which is generally referred to as mal-absorption.  This can result in malnutrition, dehydration, vitamin and mineral deficiencies, gallstones and kidney stones. Among younger children, mal-absorption, and/or the side effects of the more successful and potent drugs used to control Crohn’s Disease may also delay growth and development thereby making Adolescent Crohn’s Disease even more challenging.

Surgery for Crohn’s often just begets more surgery

In extreme cases, the intestinal inflammation caused by Crohn’s Disease can block the digestive passageway and cause an “obstruction” like water trying to pass through a fully bent “kink” in a garden hose. To avoid a life-threatening perforation of the bowel, surgical intervention is often required to clear the obstruction or widen the narrowing by removing diseased portions of the intestine or the blocking scar tissue which has formed from the inflammation or from prior surgeries.  However, Crohn’s Disease can be chronic and aggressive such that the inflammation can return days or weeks after such a surgery and then eventually the patient runs out of intestine to remove.  Additionally, surgical intervention typically leaves scar tissue or adhesions making surgery ill-advised for Crohn’s Disease patients as surgery usually begets more surgery but, nevertheless, in some patients it is necessary due to the relentless severe pain, disabling lifestyle interruptions and potentially life-threatening complications from the inflammation, narrowings and obstructions.

Colostomies, Ileostomies and a J-Pouch

In other extreme cases, it is necessary to create an Ostomy which refers to the surgically created opening in the body for the discharge of body wastes.  These typically include colostomies, ileostomies and a J-pouch procedure during which the colon and most of the rectum are surgically removed and an internal pouch is  formed out of the terminal portion of the ileum. An opening at the bottom of this pouch is attached to the anus such that the existing anal sphincter muscles are used for continence.  That said, before any Ostomy is considered, much patient suffering occurs and a variety of non-surgical treatments are attempted. Considerate doctors try to do all they can to first get the Crohn’s patient out of pain and then to stave off surgery and the creation of an Ostomy.

Fistulas, Anal Fissures and Abscesses

If the inflammation caused by Crohn’s Disease in one area of the digestive tract spreads all the way through the intestinal wall, the inflamed area can literally “stick to” other organs and structures in the abdomen. This leads to the formation of “fistulas” which can develop between the intestine and the other organs and structures it is not normally connected to; such as between different parts of the bowel, the bladder, the vagina, or even the skin on the outside of the body. This is obviously serious and requires immediate medical attention because the contents of the intestine can enter into these other sites, causing infection and other medical problems.  Crohn’s Disease can also cause problems around the anus. These may include painful cracks in the skin known as “anal fissures” (i.e., a tear in the lining of the lower rectum (anus) that causes pain during bowel movements) or an “abscess,” a tender pocket of inflamed or dead tissue or pus that is also usually very painful.

If the Disease don’t getch ya’, the drugs will!

In addition to the above potentially serious, painful and disabling medical problems inherent in Crohn’s Disease, the often potent medications used to control the disease such as Biologics, Prednisone, Methotrexate, Imuran, Budesonide, 6-MP, Flagyl, etc., can have severe side effects such as causing various forms of cancer, osteoporosis, diabetes, cataracts, fatal lung fungal infections, chronic respiratory problems, dangerous liver conditions, pancreatitis, anxiety and extreme fatigue.  Also, people who suffer for several years with one (1) incurable autoimmune disease like Crohn’s Disease often begin suffering from another incurable autoimmune disease such as Rheumatoid Arthritis or Lupus.

The bottom line is that Crohn’s Disease can have unpredictable and devastating physical, mental, emotional, financial, social, professional and familial effects. The potential pervasive effects of Crohn’s Disease can affect your life significantly; including everything from your appearance to your diet to your lifestyle to your relationships and even to your choice of careers, that is, if it doesn’t disable you.

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3 responses to “What is Crohn’s Disease?

  1. Thank you Michael.

    You have put words to much of my life for the past 40 years. I’ve been fortunate enough to have had 18 years since my last surgery with help from Remicade.

    Recently they have discovered a poorly functioning pancreas, proscribed enzymes which have cured my chronic diarrhea .

    Unfortunately I now have lost remission and tried all the other approved biologics, which seem more effective ans less toxic than 6mp, pentasa, etc.

    I had always thought of writing a book about being a professional patient. Unfortunately you have a great deal more experience, and have already wrote it.

    Thank you,

    Rick

  2. Michael, excellent work. I’m the husband of a Crohn’s sufferer. I’m very grateful my wife hasn’t needed surgery. I understand that every cause is unique and she is able to manage her’s with a careful diet and exercise (mostly). I’m commenting to affirm your work and thank you for your honesty and quality writing. This post, in my view, helps explain what is crohns disease better than the sites that only provide the generic medical terms. Thanks.

  3. I finally have, after it all, am calling my condition the “crippled colon syndrome”.
    Jerry Daniel

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