When Doctors disappear, Crohn’s Disease Patients ONLY have each other

The grim reality for Crohn's Disease & Ulcerative Colitis patients.

The grim reality for Crohn’s Disease & Ulcerative Colitis patients, especially on weekends and holidays.

     Another weekend went just went by during which I encountered a very experienced and intelligent patient with Crohn’s Disease posing the following question to a well-trafficked Inflammatory Bowel Disease (IBD)-dedicated “Group” within a health care social media platform: “Do you think I should to the hospital?”  The question was followed with his symptoms following recent Bowel Resection Surgery during which his terminal ileum was removed. That vital information was followed by a succinct description of his most immediate three (3) experiences going to the closest emergency room (ER) for these very same SERIOUS symptoms and being swiftly discharged (after waiting an average of 5 hours each time to be seen) and told by the ER staff, “You have Crohn’s Disease, you have to learn how to accept it and deal with it.”  WTF?????

        I have been in this unenviable situation at least seventy-five (75) times when the area in and around a fairly recent Bowel Resection Surgery or Strictureplasty for my Crohn’s Disease started to cause pain and partial obstructions.  Pain can be addressed with medication but the source of the pain MUST BE DETERMINED because the brewing underlying problem could be LETHAL.  If that is the case, why are ERs around the United States so quick to discard these patients?  Granted, there is no knife in these patients’ stomachs but metaphorically they could be in a worse position.  Incredibly, I don’t blame the ER staff because they must triage patients and simply patch them up so they make it through the weekend or holiday and get to see their doctors as soon as possible.  Therefore, where are the gastroenterologists over the weekend or during a holiday when a post-operative Crohn’s Disease patient develops painful and potentially dangerous complications?

     When I was younger and was in this position, the best strategy from a patient’s perspective was to call your gastroenterologist and if he or she recommended you go to the hospital, you were going under the auspices of your doctor and that held a great deal of credence.  But with the advent of “hospitalists,” there is no longer a “personalization” to emergent patient care for those patient’s suffering from incredibly complex, chronic, incurable autoimmune illnesses like Crohn’s Disease.  This was also not a patient crying “Wolf,” nor “Uncle” at the first sign of discomfort.  This patient had endured painful symptoms for several days and his doctor didn’t seem that concerned even though they seemed to be worsening and the weekend was quickly approaching.

     What is wrong with some doctors who refuse to anticipate the type of situation this desperate patient was put in this past weekend when he essentially “crowdsourced” his decision to yet again go back to the emergency room for dangerous symptoms related to a recent Bowel Resection Surgery for his Crohn’s Disease?  Don’t they understand how the status of a post-operative Crohn’s Disease can turn on a dime?  Don’t they have any compassion for a patient who has been through several surgeries such that his word should be trusted that something is wrong?  Are they waiting for the patient to pass out from intestinal-perforation-type pain in order to take them seriously?

      Granted, I understand that some Crohn’s Disease patients have a very difficult time managing the disease, especially post-operatively when unrecognizable “healing pains” may occur or bowel habits may change and worry sets in which often sends them to the ER needlessly (and when I was younger, this did happen to me).  I also understand that ER personnel are not trained to spot or treat the nuances of the different degrees of Crohn’s Disease.  But the patient’s gastroenterologist should take more interest in the patient when he or she respectfully contacts them with a potential problem and a weekend or holiday is fast-approaching. 

 Crohn’s Disease is hard enough to manage without gastroenterologists NOT trusting experienced patients. Moreover, scheduling a future out-patient diagnostic test to resolve the experienced patient’s problem when it appears likely to be a fistula, abscess, infection or obstruction is UNACCEPTABLE.  Something has to change when an experienced Crohn’s Disease patient is so “scarred” from past 5-7-hour unhelpful ER visits that he Crowd-Sources his decision to go back to the ER when he is obviously VERY SICK and his doctor has left him with no instructions to rely upon for guidance.

    Sadly, I have come to accept this situation as just another “symptom” of Crohn’s Disease.  While this may sound like a complaint more appropriately directed at the overall United States healthcare system, IBD patients certainly know what I mean.  It quickly becomes demeaning and the patient’s input becomes determinative of care and timing of care yet too many gastroenterologists and ER doctors don’t “trust” patients with Crohn’s Disease or Ulcerative Colitis because it is never a “black and white” situation; always grey.  Too many medical professionals these days are uncomfortable “solving problems” and operating in that “grey area” so IBD patients please understand that we MUST HELP EACH OTHER.  That’s very sad and this is why, “Patients helping other IBD patients is often the best medicine.”

Why Crohn's Disease and Ulcerative Colitis patients must help each other as Doctors tend to shy away from the "grey," weekends, holidays & ER Trips.

Why Crohn’s Disease and Ulcerative Colitis patients must help each other as Doctors tend to shy away from the “grey,” weekends, holidays & ER Trips.

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