During my various daily interactions in the different health care social media (hcsm) platforms, I try to answer at least a few Crohn’s Disease, Ulcerative Colitis or Inflammatory Bowel Disease (IBD) questions each and every day. As a result, many people reach out to me privately, either through my Blog, CDWP Facebook, Google+, Twitter, LinkedIN or Tumblr accounts, and ask me questions more tailored to their situations. I also recently participated in a Reddit “Ask Me Anything” session about Crohn’s Disease to try and interact with people who might not be active in the more traditional aforementioned hcsm platforms. I try to answer every question but due to the unpredictability of my own disease and the 24/7 responsibilities as the primary caretaker for my Mom, sometimes that is not possible. Therefore, I thought it would be most helpful to the IBD community to start posting a few of the most interesting questions concerning the most generally applicable topics in an occasional “Crohn’s Disease Warrior Patrol” Mailbag, “Q & A.” To that end, I have changed the names of the people who’ve asked these questions to protect their privacy. If you have a question you’d like me to similarly address, please feel free to contact me at any of the above-referenced hcsm platforms.
CDWP Mailbag #1
Q: Hey. I’m 15. My friend was recently diagnosed with Crohn’s Disease after he had really bad stomach pains and hadn’t been eating much for weeks. What can I do to help him? —-Alexis Alva, New Orleans, LA
MAW/CDWP: That’s a very thoughtful question and I wish more friends were as considerate as you. Educating yourself on Crohn’s Disease is probably the best 1st step but please keep in mind that even many gastroenterologists around the country don’t have the “same” working grasp on it. Additionally, after you become familiar with the medical terminology, try to put yourself in your friend’s shoes and imagine the possible social, financial, familial, and relationship effects of an incurable, potentially severe disease which is also “invisible.” By that, I mean your friend could be very sick but look FINE. This doesn’t sound like much of a problem but I assure you it may turn out to be the most difficult problem caused by his Crohn’s as I have lost friends because of this and I suspect some strained family relationships are directly related to our respective different interpretations of the disabling effects Crohn’s Disease has on my life.
For example, some people close to me who’ve witnessed the 20-25 surgeries, 200 hospitalizations and bizarre Crohn’s Disease medication side effects, some of which were worse than the Crohn’s, think I’m not disabled and should be doing more with my life despite the most credible IBD doctors in the world deeming me “permanently disabled” in extensive written documentation supported by voluminous Operative Reports, Pathology Reports, etc. My friends seem to “walk in my shoes” and they understand my situation so perhaps there is more involved when it comes to siblings, relatives, parents, etc. While it’s easy to logically contend with such a “misunderstanding,” it is a very disturbing feeling when people who love you either don’t believe you or they have other reasons for not “accepting” your medical impairment. I bring this up so you are aware that your friend could silently be dealing with a similar situation and that’s very difficult to talk about for most people. At least your friend was properly diagnosed because many Crohn’s Disease patients complain of the numerous “textbook” symptoms but some doctors refuse to believe them if their diagnostic tests are not 100% determinative of Crohn’s Disease. Since most diagnoses of Crohn’s Disease are rarely “black and white,” these un-diagnosed Crohn’s patients can wait years for the proper diagnosis and during that time people close to them start to wonder if their friend or family member is really just a hypochondriac looking for attention. I was in that position and it was horrific but thankfully my parents never wavered in their support of me. Thankfully your friend doesn’t have that problem but if he did, I suspect YOU would be 100% supportive.
Lastly, and I have learned this from MY FRIENDS: Many times we make plans to hang out and at the last minute I must cancel due to some aspect of my Crohn’s Disease flaring up. When I was first diagnosed back in 1984 or thereabouts, my cancellations were perceived as a problem or as a slight by many of my friends/acquaintances (and it bothered me because I also didn’t understand the unpredictable nature of the disease). Fortunately, over time, the people in my life have witnessed the sudden impact caused by the unpredictability of my Crohn’s Disease. Therefore, if I do not show up as, or when, planned, they assume I am sick. They call to make sure I am okay but they NEVER GET MAD. One very close friend even told me that whenever they make plans with me, they know that I am a “game-time decision” because I might have to cancel at the last minute. I love them for being so thoughtful and considerate. THAT’S how you can help your friend. 🙂
Q: I’m SO very frustrated….I have been having problems for several years now, always told it was IBS. I finally went to a gastroenterologist and he suspects some type of Colitis so I’m going for a colonoscopy next Tuesday to see what’s wrong. I am so SICK of this, I have gotten to where I just don’t eat all day long, and literally starving myself so I won’t have to go to the bathroom. Today, I haven’t eaten a bite till I decided to nibble on a couple of Lay’s Potato Chips. Five minutes later, I find myself running to the bathroom. Is there any hope? Will I be able to enjoy food again? Will I ever get to stop worrying about leaving the house and being afraid that I will have to scramble to find a restroom in a hurry?? This is affecting my life horribly, is there hope??—-Jodi Payne, Reno, Nevada
MAW/CDWP: Jodi, the “diagnosis journey” to IBS or to IBD can be very frustrating and time-intensive. Sometimes it helps to see another doctor simply to get a new “perspective” because some physicians are uncomfortable with IBS or IBD cases which aren’t “black and white.” Personally, I find those gastroenterologists the hardest to deal with because IBDs like Crohn’s Disease and Ulcerative Colitis are usually identified based on an experienced doctor feeling comfortable and confident distinguishing between many factors within the traditional diagnostic results being in the “grey” area. Even if you think your doctor is up to that very difficult task, YOU might gain some different perspective from seeing another doctor and what you learn may help you “present” your symptoms to other doctors in a way in which they recognize that you have IBS or IBD. I almost forgot to add that YES, THERE IS HOPE. You will get properly diagnosed and whether it is IBS or IBD, there are many medications to help control the difficult symptoms you describe, which, by the way, we all fear and tend to plan our lives around, until we find “that” medication which works best for US. Hang in there and try to keep a diary of what you eat and how you feel afterwards. By doing so, you might stumble upon a pattern and that would be very helpful to your doctor.
Q: 5 1/2 weeks in the hospital so far! Came in on the 31st of March and had complications on the 9th. Several surgeries later here I am! I was at the brink of death! God brought me back! I’ve had Crohn’s since 1990!—-Becky Rosenberg, Sunrise, Florida
MAW/CDWP: Becky, you are quite the Warrior. I’ve had Crohn’s since 1984 and the look in your face says it all [she had posted a picture with the above comment being the caption). 5 1/2 weeks in a hospital is literally like “doing time” with all due respect to actual “prisoners.” I hope you are done with the surgeries and making your way up the food chain from jello to bad, but solid hospital food. Hang in there. Also, whenever I have been in situations like yours, I developed a “survival mindset” in which I only worried about getting through each day and I abandoned any “results-oriented” thinking. That’s why I refer to it as “doing time” because it really is that difficult – as you well know. I learned to do that after SO MANY hospitalizations in my early 20s where the “highs” and “lows” eventually devastated me. With Crohn’s, as you also well know, you can be signing your Hospital Discharge Papers and then suffer an intestinal obstruction and be rushed into emergency surgery!!! You seem like you have a much better attitude than I did, so try and relax and just get through it and when you come out you will laugh at how a particular nurse woke you up every night at 2 AM to take a sleeping pill. Unfortunately, we can’t control the Crohn’s but we sure can laugh about the bizarre situations it often places us in.
Q: What IS Crohn’s Disease?—-Lisa Keifer, Oklahoma City, OK
MAW/CDWP: Before I tackle the “meaning of life,” I will attempt to answer your question succinctly as possible. Crohn’s Disease is an Inflammatory Bowel Disease (IBD) which is a chronic, incurable, autoimmune disease, and it primarily affects the gastrointestinal system. Essentially, people born with a genetic predisposition to Crohn’s Disease wind up getting it when that proclivity is “triggered” by some environmental factor or destabilizing infection in the intestine. More specifically, sensors in the gut and the brain detect some type of bacteria in the intestine which should not be there, so the body sends certain proteins to thwart the development of that unwanted bacteria but people with Crohn’s don’t have the capacity to stop “defending against the unwanted bacteria” and the repetitious pounding against this intestinal bacteria “intruder” causes painful inflammation in the gut. This inflammation then makes the diameter of the intestine smaller, as the inflamed intestine becomes swollen. Accordingly, people with Crohn’s Disease don’t have weak immune systems; they have overactive immune systems.
When the intestine occludes to the point of “obstructing” the intestinal passageway, then the patient has an incredibly painful “intestinal obstruction” because the body’s natural process of “peristalsis” (i.e., the involuntary constriction and relaxation of the muscles of the intestine which creates wave- or cramp-like movements that push the contents of the intestine forward) keeps functioning as if the “garden hose” of an intestine is not “kinked,” when, in fact, it is. The pain increases as peristalsis keeps trying to push through the intestinal blockage. This warrants emergent medical care to avoid the intestine from perforating such that its contents would be emptied into the body where they would be treated as toxins by different human organs and systems. A person can die when that happens.
Some Crohn’s patients respond to the intestinal inflammation a bit differently in that it creates frequent and painful excretion of waste and/or development of a fistula (i.e., the unnatural connection of two body cavities, such as the rectum connecting to the vagina, or the connection of a body cavity to the skin, such as the rectum to the skin) and/or an abscess (i.e., a confined pocket of pus that collects in tissues, organs, or spaces inside the body). These are just the gastrointestinal (GI) effects and since Crohn’s Disease is an autoimmune disease it can cause “peripheral manifestations” such that there can be inflammation anywhere in the body from the eye to the mouth to the anus.
The most common peripheral or “extra-intestinal” manifestations involve the musculoskeletal system (such as arthritis in various joints even necessitating joint replacements such as my recent left hip replacement surgery at the age of 50 years old, or the development of “Sacroiliitis” from very painful inflammation of the sacroiliac joint), dermatologic systems (a broad spectrum of skin diseases and rashes, with “Psoriasis” being possible) as well as various serious conditions involving the ocular, renal and pulmonary systems. Other serious manifestations involve the development of Primary Sclerosing Cholangitis (PSC), a liver disease which involves severe inflammation and scarring that develops in the bile ducts. (Although, PSC seems to occur more frequently in people with Ulcerative Colitis than in those with Crohn’s Disease.) The peripheral manifestations in the ocular, renal and pulmonary systems include, but are not limited to, cataracts, kidney stones, gall stones, prostatitis, bronchitis and much more serious diseases within these systemic specialties.
As mentioned above, doctors tend to define Crohn’s Disease mostly in terms of its effects as a gastrointestinal disease. But from a patient’s perspective, at least mine, I believe such a myopic definition is a gross underestimation of the disease’s potential severity. More specifically, based on my experience, Crohn’s Disease is more like the body’s inability to efficiently or effectively stop, or even make a dent in, the painful inflammation resulting from an overactive immune system which responds abnormally to simple injuries like hip flexors, seasonal allergies or severe dry eye. Then these seemingly run-of-the-mill conditions become more complex and require much more time and care to heal. From a practical perspective, when physicians fail to more readily acknowledge my body’s inability to control its response to inflammation, it’s as if they are treating a different person because I typically need stronger antibiotics, I need to be on them for a longer period of time and my pain is usually more pronounced than that of other people suffering with the same injury and my injury tends to last longer. A good example of this is demonstrated by my February, 2014, Left Hip Replacement surgery. It is over one (1) year later and I’m still in physical therapy trying to put an end to the various post-operative inflammatory-based problems. Most people are walking without a cane and back at work within a few months. My body can’t “process” the shock of the inflammation and it also results in chronic pain.
The effects of Crohn’s Disease can get further compounded by the possibility (or probability) of lifestyle-altering or life-changing side effects from the most efficacious medications such as steroids (i.e., “Prednisone” to reduce the inflammation, which may weaken the bones), immunosuppressant drugs (i.e., “6 MP” to slow the overactive immune response, which might induce the painful condition of “pancreatitis”) and immunomodulator drugs (i.e., biologic drugs like “Humira,” which fine-tune or modulate the exact protein used in trying to thwart that unwanted bacterial intruder but which can initiate a laundry list of life-threatening or substantially life-altering diseases).
Lastly, please also note that Crohn’s Disease is a “broad spectrum disease” such that I have Severe Crohn’s Disease for thirty (30) years (200 hospitalizations, 25 surgeries, etc.) whereas my older sister has thus far had a much milder case which has warranted zero surgeries and no hospitalizations.