abcs of IBD, Crohn’s & Colitis

IBD = Inflammatory Bowel Disease of which Crohn's Disease and Ulcerative Colitis are the most common.

IBD = Inflammatory Bowel Disease of which Crohn’s Disease and Ulcerative Colitis are the most common.

      In light of it being Inflammatory Bowel Disease (#IBD) Awareness Week, below are some quotes/comments I’ve made over the years and some I’ve come across from friends, patients, IBD parents and IBD doctors, along with some personal commentary which I think provides quick and accurate insight into what it’s like to battle these incurable, autoimmune and chronic diseases. Therefore, if you are newly diagnosed, an existing IBD patient going through a tough time or you have a friend with IBD and want to better understand what he or she goes through, please read this “list” I’ve compiled from my 30 years of living with Severe Crohn’s Disease:

  1. “You been hospitalized so many times, you’re like a pro at this so I won’t even bother visiting you since you’ll be out soon.” OR “I want to visit him in the hospital but he’s back in for that ‘Crohn’s Disease’ and I don’t want to interrupt him running back and forth to and from the bathroom while he’s in such terrifying pain.  Besides, what would I say?” [Scenario 1 – Actually, the more I’m hospitalized, the scarier it gets and the more I crave the normalcy of my friends and home life. So hospital visits from my friends are more important to me now at 53 then they were when I was first hospitalized over 200-times-ago at the age of 21 or so. Scenario 2 – Whenever I have Crohn’s surgery, I tell my friends to always call beforehand and not to surprise me because there’s always a few days after the surgery when I’m “waiting” to go to the bathroom and that 1st sudden urge can be embarrassing when your almost-girlfriend is sitting on your hospital bed trying to make you feel better or other visitors can’t get out of your way fast enough.  Not knowing what to say is a common anxiety of hospital patient visitors but it is based on a misconception of what hospital patients seek from their visitors. We only want our lives to return to some type of normalcy, even if just for the duration of a 15-minute hospital room visit from our buddies. We want to laugh and be kept in the loop.  We also want to have all our “stuff” once we are more mobile inside the hospital room and friends and family are incredibly helpful when they ask me if I need anything. My closest friends usually know when I’m allowed to eat and they surprise me with my favorite foods.  These kinds of visits have created wonderful memories for me despite them taking place because of a difficult experience.] 
  2. “I just saw you out partying Friday night and you were fine; now it’s Sunday and you are too sick to come to my wedding because of this stomach-ache disease?” [In my younger days when I still “partied” and was in denial about my disease and thought “clear liquids” included vodka,” I lost friends over issues like these because Crohn’s Disease patients often don’t look as sick as they are and the symptom of unpredictable and extreme fatigue is really a symptom of Crohn’s Disease and needs to be respected as one.  As for the classification of my disease as some type of serious stomach ache, that was always my fault because I always tried to downplay the fact I had such a serious health problem at the young age of 21.  When you add up all of these reasons and also factor in the lack of accurate awareness about IBD, I’m lucky my friends had so much patience with me. Their selfless acts to help me taught me how to be a better friend to them.] 
  3. “I don’t care how tired you are; you are coming to Family Dinner.” [I would go but I’d fall asleep at the dinner table as if I had drank Benadryl soup.  The unpredictable fatigue from my Crohn’s Disease is a potent symptom.  To this day I’m not sure if certain friends and family truly understand it’s pervasive effect on me. I think it is the IBD symptom which can be suddenly disabling yet it is also the symptom least formally associated with these diseases.]  
  4. I know it hurts but giving you narcotic pain medication will only make it worse because it slows things down which are trying to move through your intestine.”  [It took me a few years to find the specialty of Pain Management, and when I did, I lost respect for the many gastroenterologists I had come across whom refused to treat patient pain (or in some arrogant cases, refused to even acknowledge its severity) when all they had to do was simply refer those patients to Pain Management Physicians so these medical professionals could teach these IBD patients how to best manage and cope with their IBD pain. I’ve always understood the gastroenterologist’s medical rationale favoring the prohibition of using opiates as a pain relief modality for IBD but real life is much different than a medical textbook and even a mundane IBD lifestyle would require this type of immediate self-administered pain relief from time-to-time.  In that regard, I’ve always wondered if these narrow-minded and heartless gastroenterologists would change their almost torturous approach towards treating and acknowledging the severity of IBD pain if their own children were diagnosed with IBD and shared with them their struggles navigating an intimate dinner party, an important business meeting or even a first date while simultaneously trying to cope with a sudden partial or complete intestinal obstruction.]
  5. “Once you have a Colectomy, your Ulcerative Colitis will be cured.” [I’ve interviewed MANY doctors about this topic and the most experienced ones all agree that removal of the inflamed body parts could cure the gastrointestinal aspects of UC but the autoimmune aspects would continue to linger such that these patients would still be susceptible to the autoimmune peripheral manifestations of Ulcerative Colitis. Sadly, some doctors disagree on this seemingly elementary point and I just hope they don’t create false expectations in Ulcerative Colitis patients whom undergo a Colectomy.  That said, these peripheral manifestations may also never occur.]
  6. “Every drug has side effects. Don’t be scared off by the serious side effects of the Biologics because very few people get them.” [In Full Disclosure, I had a terrible time with Humira and developed serious lung problems for which I required aggressive rounds of chemotherapy to stay alive after I developed some type of aggressive lung inflammation which made breathing so difficult I was unable to breathe and talk at the same time.  That said, I KNOW PEOPLE WHO HAVE DONE VERY WELL on Remicade, Humira, Cimzia and Entyvio, some for MANY YEARS, and all with no or insignificant side effects.  “Your mileage will vary,” as they say.]  
  7. “Can I catch Crohn’s Disease from kissing you?” [A very pretty teenager with Crohn’s Disease who I was helping told me that a guy she liked asked her this just before they had their first kiss.  She was mortified but I just told her that the guy simply was uneducated about the disease and she should try to enlighten him and see how things go from there.  I’m not sure how that specific situation ended up but she’s never been asked that question again and has developed into a confident, happy and productive young adult.]
  8. “We can only release you from the hospital AFTER you’ve demonstrated [and we’ve documented] that you’ve advanced your diet from drinking clear liquids to full liquids and then eating soft food and having a normal bowel movement. But your insurance company will not pay for you to stay in the hospital for much longer so …” [This happens all the time at hospitals to the point where you feel bullied to rush your body after a surgery for Crohn’s Disease or Ulcerative Colitis. Don’t ever do that and always trust your body – NO MATTER WHAT.  It will let you know when it is time. Just be polite and respectful when speaking to all medical professionals.] 
  9. “I know your gastroenterologist a long time and I trust her judgement 100% but I don’t see anything wrong with your eyes.  The pain you have is probably due to stress or tension and it will go away on its own.”  This ophthalmologist may be 100% right but it has been my experience that Crohn’s Disease can cause SERIOUS eye problems as a “peripheral manifestation.” To that end, if you are not respectfully vigilant about your reasonable optic concerns, you could wind up regretting not trusting your instincts for the rest of your life.  In this instance, the kind of attentiveness I’m suggesting means seeing two (2) other eye doctors just to make sure a major medical problem is not brewing in that part of your body.  Other common types of “peripheral manifestations” of IBD can happen anywhere in the body and frequently we notice them before they reveal themselves to specialty doctors.  For that reason, IBD patients often must be like Medical Detectives, always on call.  
  10. “You prescribed a certain drug for my Crohn’s Disease and my insurance company is requiring a Prior Authorization Form from you explaining why I need THIS expensive drug instead of any of the many other less expensive alternatives which are also used to treat Crohn’s Disease. But now you want to charge me $50.00 to complete the rote Prior Authorization Form you’ve completed 100 times before for other Crohn’s patients or you won’t do it? Have I not paid you THOUSANDS OF DOLLARS over the past 10 years?  Am I not one of your longstanding Cash Cows?  Why are you ‘nickel and diming’ me when you will certainly earn a great deal of money off of me throughout the course of my disease?” [It’s hard to keep your cool when your doctor, or more usually, his or her drunk-with-power office manager, comes across as an inhumane and heartless soul.   But you must be FIRM because with diseases like Crohn’s and Ulcerative Colitis you may only have 6 1/2 feet of your Small Bowel left, or none at all, but you do have a certain amount of financial leverage so long as, all joking aside, you exercise it RESPECTFULLY.]
  11. “Doctor, why are you asking ME which Biologic drug I should go on for the continued aggressive course of my Crohn’s when I know nothing about them beyond their delivery methods and the related delivery conveniences?   [I see patients routinely posting queries in the different IBD Facebook Groups such as, “Which Biologic should I go on?” as if they are seeking crowdsourced advice about which dress they should wear to their Senior Prom! These POTENT medications are generally similar in how they work but they are individually different drugs which is why one person (ME) might have a delayed anaphylactic reaction to Remicade but can perfectly (at least temporarily) tolerate Humira (until its side effects made it difficult to breathe and talk at the same time).  Additionally, some IBD doctors use a Top-down method regarding the implementation of these various potent drugs whereas others use a Bottom-up approach.  Thus, this “Prom Dress” decision seemingly should be a medical one based on a doctor’s professional medical assessment of your IBD case taking into consideration your age, the severity of your disease, the duration and progression history of your disease, the success or failures of other medications used in treating your disease, etc.  Note: Pediatric IBD doctors are typically more aggressive than others with Biologics (thus, they often engage a Top-down methodology starting with the most potent drug) because kids tolerate these drugs better than adults due to some scientific reality involving their natural resistance to antibodies. But often a reasonable argument can be made about whether or not a teenaged IBD patient falls within a pediatric classification or is sufficiently medically mature to be considered an adult.  I kid with the “Senior Prom” metaphor but this has become an increasingly significant problem given the aggressive television advertising campaigns of certain Biologics.]  
  12. “I have been a patient of yours for 15 years yet you won’t return my phone calls to discuss my recent blood test and I must make a formal office appointment to spend 5 minutes discussing it at the cost of paying $125.00 for an office visit?” [Some doctors are great at their medical specialty because they become very good treating a specific problem and then they move on to another patient.  But doctors who treat IBD must maintain long-term, mutually respectful and trustworthy patient relationships due to the chronic and incurable nature of the disease.  The problem is that some of these doctors don’t realize they aren’t cut out for maintaining relationships with their chronic patients until it’s too late and by then they become those nasty, ego-centric  doctors from whom we IBD patients run. A medical office policy which makes a patient come in and pay for an Office Visit to obtain and discuss routine blood work could be demonstrative of a money-hungry doctor who’s simply lost the zeal for operating this type of chronic patient Medical Practice.  This is just something IBD patients have to continually monitor but policies like this one could be warning signs indicative of the need to find a new doctor.]  
  13. “Doctor ____, I have great respect for you and how well you have treated my Crohn’s Disease for many years but I wonder if it’s not time for me to change to another doctor because this is the 3rd time I’ve been admitted to the hospital in 7 weeks and each time I’m admitted you just give me intravenous steroids and strong pain medications hoping my flare-up will run its course and never return but I still wind up back at the emergency room a few weeks later.  What is your Plan of Treatment for me?  Do you even have one? Are the newest drugs and treatments being considered to more efficaciously treat my case?  Has my Crohn’s Disease gotten so complex that I need a new set of eyes treating me?  Must I go back into New York City to see gastroenterologists who see the most Crohn’s Disease cases and as a result are better prepared to handle a complex case like mine?”  [I was a “consultant” to a Crohn’s Disease patient who went through the above situation.  It broke my heart to see her repeat the same nightmare every few weeks.  I was careful to never give my opinion until it was asked for.  When it was, the resulting questions evolved.  The patient had a LONG relationship with this doctor but her IBD case had become too complex for him to best treat her.  I understood why she had difficulty confronting him about this and that’s why it’s always a good idea to have another person such as a family member, a friend or a paid advocate to intercede on your behalf.  Between the unbearable pain from the flareup, whatever medications she was being given to treat the pain/flare-up and the “Groundhog’s Day” frustrating emotions, she didn’t understand just how mentally and emotionally compromised her judgement had become.  Finally, some of her family members and I carefully pointed out to her how far her case had exceeded the capabilities of her very nice and compassionate doctor who should have referred her to a more active IBD specialist much sooner then when I entered the picture.  This is one of the hardest things IBD patients and IBD doctors must contend with and it’s why I always consider my relationship with IBD doctors as a collaboration.  I need to trust that my convenient suburban IBD doctor will know if and when I must be seen by more sophisticated IBD doctors more up-to-date on the latest research and information regarding available treatments.] 
  14. “I’m trying to clean up my financial life and in doing so it is obvious I need to declare bankruptcy because the amount of my seemingly non-stop medical bills SO outweighs my annual income yet there is no protection in the United States Bankruptcy Code for my situation as I can’t dismiss large medical bills from my longtime gastroenterologist when I will have to see him EVERY MONTH. What am I supposed to do?”   [This is a common rhetorical complaint of longtime patients with incurable, chronic or rare diseases because when medical bills start accumulating in 1986 or so and NEVER STOP even 30 years later, the enormous financial debt begins to have real-life implications. There are numerous reasons for the debt growing so large despite having excellent insurance but if this type of medical bill Bankruptcy were processed like a typical bankruptcy, these patients would have to stiff doctors who’d be treating them in the very near future.  If they did that, they would lose access to these doctors, many of whom could be keeping them alive.  Something has to be changed in this area because people with Rare Diseases or with very expensive chronic, incurable ones like Crohn’s Disease, are being forced to choose between going broke paying for all the medications and surgeries they need to live or foregoing all such medical needs and dying young or living in extraordinary pain. ]
  15. “Doctor, for the past 8 days I have had an NG Tube running from my nose into my stomach, a Foley Catheter running through my penis into my bladder and various intravenous lines for medication, liquids and food. When I get up to walk, I feel like a horse being walked around a stable.  When are some of these contraptions being taken out?  Is it really necessary that I walk around the hospital attached to all these machines?  And why do you need so much blood? Also, why do they wake me up to take sleeping medicine?” [While often very funny out of the necessity to cope with a cacophony of catastrophic circumstances, hospitalizations for Crohn’s Disease and Ulcerative Colitis still seem barbaric at times since the same tools and principals used in the 1950s are still being used today in 2015.  For example, every IBD patient dreads having an NG tube threaded up through their nose and then finessed down into their stomach through that very same nose (and usually done so by an inexperienced Medical Resident who has the magically malleable hands of a 55-year-old lifelong outdoor cement worker) to help alleviate the pressure inside their intestines causing them so much pain but it’s still the only way to quickly help a patient and also prevent an escalation and possible fatal intestinal perforation. Then again, I’ve been in so much pain that I’ve BEGGED to get for an NG Tube.  That’s how sardonically painful Crohn’s Disease can be.  But when you think about it, an NG Tube is no more than a siphon which empties the contents of the stomach into a collecting bottle.  Every-time I realize that, I wonder how no-one has thought of a less barbaric method during the past 50 years when we all now walk around with super computers in our pockets.  We can even call each other in different continents on our computers but when someone comes into an emergency room with an Intestinal Obstruction we still must make that patient endure the same additional extreme discomfort of having a young, still-learning almost-doctor insert a siphon up, through and down their nose into their stomach like they’re an elephant!  IBD is a very serious disease but there’s always humor in it because you meet wonderful people during your challenging journey.  Many lucky IBD patients never see the inside of a hospital and many don’t ever have to take medications which affect their immune systems.  But I hope you now understand how severe and pervasive IBD can truly be and how challenging it is to cope with managing the disease. Please also don’t forget about the extraordinary IBD Caretakers and how friendships and relationships become transformed to a higher place when one person learns about life through the other’s heroic daily battles with IBD and how these people with a chronic and incurable disease nevertheless remain forever inspirational in everything they do.  In any event, somehow, through all the ups and downs, IBD creates extraordinary people and now we just have to be patient because researchers are working hard at creating safer and more efficacious treatments and possibly even a cure for future generations.  At this point, though, I don’t want to dream big so I’d be happy if they started their progress by making the NG Tube obsolete.] 
Please leave any constructive comments.  Thank you.

Please leave any constructive comments. Thank you.

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