It’s been a while since I’ve posted but that’s because I had some opportunities to speak about Crohn’s Disease in some very cool places around the world and then, ironically, I had a very serious Crohn’s flare-up and was hospitalized at Mt. Sinai Hospital in New York City for a week or so. I am better now so I thought I’d take advantage of this rainy-Sunday to address a VERY important issue which seems to come up every day on the different health care social media platforms. That is, how do I know I am sick enough to warrant going to the hospital for my Crohn’s Disease or Ulcerative Colitis? In other words, should I stay at home or should I go to the hospital? This decision-making process has become so important to Inflammatory Bowel Disease (IBD) patient care and to health insurance coverage for same that many would say having to make this decision in a such a physically or mentally compromised state is simply just another symptom involved with managing Crohn’s Disease.
This question is predicated on the IBD patient’s vast experience being hospitalized and thus knowing what they’d be in for in the hospital. With IBD, hospitalizations typically involve either no-brainer emergencies like severe intestinal obstructions or severe flare-ups which require intravenous treatments to avoid becoming emergencies. Accordingly, an experienced patient typically contemplates managing the flare-up as an outpatient, which could however involve waiting around too long for various doctor appointments and the scheduling of diagnostic tests and thus this patient runs the risk of winding up in the hospital anyways, or going directly to the hospital emergency room (after seeing and speaking to their gastroenterologist so he or she is aware that a hospital admission is required) to facilitate being admitted to the hospital.
But before deciding on which path to take, the experienced Crohn’s Disease or Ulcerative Colitis patient considers what awaits them in the hospital such as the extremely uncomfortable insertion of a Nasogastric (NG) Tube into their intestine through their nose like a human siphon, having to BEG for adequate pain relief, possibly being unnecessarily chastised by some doctors who think the diagnostic test results don’t sync up with the patient’s complaints of pain, defending their decision to be hospitalized while the skeptical, lazy doctors are waiting to be hit over the head with a diagnosis which is rarely “black and white,” dealing with young Residents who think they know it all when the patient knows more about his or her disease than the Residents do, being forced to check their dignity along with their personal belongings into those plastic hospital-issued bags, missing days of work or school or not being able to attend various personal or parental events and feeling like being locked up in some type of medical prison.
Based on my 30 years with Crohn’s which includes over 200 hospitalizations with 50% of them being emergencies and thus no-brainers, I still go through the above “should I stay or should I go” hospital analysis and when the pain is too much for me to handle with the drugs supplied to me by my Pain Management Physician, I know it is time to get to a hospital. When I have an intestinal obstruction which won’t abate after I stop eating and live on liquids for a few days, I know I must go to the hospital. There are several other “indicators” which I rely upon and as I have gotten older I definitely skew towards NOT GOING TO THE HOSPITAL but I also know that as much as I loathe the hospital patient experience, sometimes it could be foolish or even life-threatening to try and “self-treat.” In that regard, patients must recognize the indicators for THEIR DISEASE which mean they must get to a hospital.
Let’s face it, there is a difference between being tough and reckless. But the other day I read the below post in health care social media [it is anonymous to preserve the identities of the people involved] and I learned that no matter how experienced, tough or smart of a patient you are, the potential for Crohn’s Disease, Ulcerative Colitis or other IBDs to quickly cause life threatening situations can make any patient wrong, VERY QUICKLY. While we fear and despise being hospitalized so much that we are comfortable assuming “some” degree of risk, sometimes, tragically, our decisions to avoid the often barbaric treatment we receive in the hospital can seal our fate, PERMANENTLY.
For those of you who are in so much pain but fear the hospital or want to avoid contacting a doctor about your symptoms, please read on. My friend’s wife died last week from an infection due to her IBD. She had been to the hospital and then ordered a follow-up with her GI doctor in ten days. She only lived 9 of those ten days. Her condition worsened when she got home but she refused to go to the ER. She thought everything would be fine when the doctor saw her [thinking] he would know what to do. The ninth day came and her daughter told her she looked like hell and she was taking her to the hospital. She passed away that evening in an Urgent Care Center. Her infection had spread to her liver, pancreas and kidneys. Her oxygen/blood levels were half of what a normal person would have. Half of her red blood cells had been replaced by white blood cells. Her husband had [also] urged her to let him take her to the hospital 3 times the week before she died and she would not go.
I get it. I hate hospitals too but, I remember the night I went to the ER and dodged death. If I hadn’t, I would not be here. It takes courage to go. It’s admitting you’re weak, but really it’s not. You are pretty brave by making the decision to get emergency treatment. I partly blame my first GI doctor for my trip. I was at his office for a routine checkup and he was pushing in on my stomach as most [GI doctors] do. It was quite painful and I tensed up, yet he kept pushing harder and harder telling me to relax. My colon was very inflamed but he pushed so hard he literally crushed it and it burst. [T]hat night, it hurt so bad I was crying. I didn’t want to go to the hospital. I didn’t want to put anyone out or bother them to drive me. I was in no condition to drive. But if I hadn’t, I would have died from septic shock or poisoning in a short matter of time. I nearly bled out after the surgery, as it was.
So, friends, don’t wait as long as I did or my friend’s wife did. This disease [can be] a serious killer. I know we sometimes wish we were dead and didn’t have to suffer, [I know,] I have. It would be so much simpler, but think about your loved ones and your friends. How would they feel if you left? Take this seriously. Nobody wants to tell your story prematurely.
My sympathies go out to this brave patient who shared this story and to the woman who passed away and to all the people who loved her but I am thankful he was so frank in his post because it made me reevaluate my decision-making process with respect to “should I stay or should I go” to the hospital. For example, when I returned from Europe a few weeks ago and knew I was experiencing a serious Crohn’s flare-up, my initial instinct was to simply see my long-time NYC GI doctor and go for various diagnostic tests. But I doubled-over in pain in his office and he hadn’t seen me do that in many years. He immediately started writing my Admission Orders and I still protested, asking for the weekend on a high dose of Prednisone to hopefully help me avoid another hospitalization. He did not agree but because I had to go back home anyways to arrange for Nursing Care for my Mom in my absence, he acquiesced. But when I got back home and kept feeling like someone was violently twisting my intestines and the pain jolted me from my chest down to my knees, I knew it could only get worse and I did not want my situation to become an emergency. After being discharged a week later and reading the above Post, I felt LUCKY.
If you take anything away from this Post, please don’t let the dignity-deafening experiences which occur in a hospital affect your “should I stay or should I go” decision to go to the hospital with Crohn’s Disease, Ulcerative Colitis or any other type of IBD. Trust your body because it is always better to be safe, than sorry.