“I can handle things! I’m smart! Not like everybody says… like dumb…”
It’s two (2) more years till Kindergarten, and I am already SO over Fisher-Price toys and smiling on-command every time one of my Mom’s friends talks gibberish to me just to make me like her. Everyone does that to me; even my aunts and uncles. I don’t get these people; just because I don’t talk, doesn’t mean I don’t understand everything they say. Still, people visiting my house have more interesting conversations with our dog, “Lucky,” than they do with me. Do they think I can’t keep up with the Kardashians? Just like the character, Fredo, from “The Godfather:” “I can handle things! I’m smart! Not like everybody says… like dumb… I’m smart and I want respect!”
My Dad’s the BEST but he’s sick & often disappoints me
I know, three (3)-years old is a bit young to be quoting “Godfather Part 2” but my Dad watches that same movie, over and over again. It’s how we bond. When I’m not sleeping or cranky because I‘m too lazy to walk to the bathroom and I have an “accident,” we watch “GF2” together, each time with me on his lap. It’s our special time together and while I love spending “alone time” with my Dad, I don’t know how to convey to him my fear of sounding like a gangster when I’m finally able to talk in complete sentences. Compared to the dads I see on television, my Dad is GREAT but he’s often not feeling well and that means he frequently has to cancel fun plans we have together like going to Disney, attending a Mets game, having a catch at our local park, going camping, etc. I really don’t mind because he’s my Dad, my bestest of best friend and I love him more than any of my Marvel Lego Superheroes but it’s frustrating getting excited to do something fun with him and then unpredictably having to stay at home only to play with Lucky. No one I know has a sick dad so I really can’t talk about it with anyone. Even if I had friends and told them about my Dad’s health issues, they’d only remember that he often disappoints me and that’s not a fair depiction of the situation because he doesn’t intend to disappoint me. It’s all because of some illness he has.
Most times it has something to do with his stomach and he winds up spending an inordinate amount of time in the bathroom, but whatever it is, it also affects his entire body and influences his ability to heal normally from simple bruises, any kind of inflammation and even from common conditions like the Flu. He also gets SO TIRED, sometimes shortly after waking up after a good night’s sleep, such that we are starting to think he suffers from some sort of rare allergy. Equally frustrating is watching Mom and Dad enjoy a night out with friends on a Friday only to have Dad tell me the next morning on Saturday that he suddenly doesn’t feel well and must cancel our plans, for example, to teach me how to fish. He then spends the entire day in bed sleeping and only gets up to go to the bathroom. The frustrating part is that he doesn’t look sick and it was only the night before when he felt well enough to go out with his friends. In no way am I suggesting my Dad is lying to me; I’m just trying to explain that whatever illness he has, it’s extremely difficult for doctors to diagnose due to its unpredictable presence and multifaceted symptoms.
My Mom also always brags about how great an athlete Dad was when they met back in college but in addition to the gastrointestinal problems, he gets crippling rheumatic-type joint pain. Yet, every orthopedist he’s seen gets baffled by his condition since every diagnostic test is normal but Dad’s in too much discomfort to continue playing basketball or tennis. Sure, he can still play those sports with me but I want to see him happier playing ball with his buddies. He’s only 32 years old and looks completely fine and if you weren’t around him all the time, you’d never believe how much he suffers. He’s even been hospitalized for just the joint pain several times and I’m not so sure the doctors knew what they were treating. If he could only continue playing sports with his friends and take control over at least his physical fitness, I think he’d be so much happier but this medical problem he has doesn’t even permit that.
Professional, Social & Familial effects of this Unpredictable Illness
After being exposed to my Dad’s unusual medical problems since I was born, I was familiar with his lack of control over both the symptoms and when they occurred. When I was very little, I remember crying every time I saw my Dad in pain and then worrying about it whenever he was fine, always expecting him to get sick. Mom soon intervened and explained to me how she and Dad were trying very hard to figure out why this was happening to Dad and she assured me they would have an answer that would get him better shortly. She even playfully referred to what they were doing as embarking upon a “diagnosis journey.” That made ME feel better but I worried about how the other people in Dad’s life felt about it like his employer from whom he had to frequently take sick days even though he looked fine the previous day at work or his business colleagues who must have wondered about the veracity of his sick day claims.
Explaining the “Diagnosis Journey” to preserve Friendships
This same skepticism was always present amongst even his oldest and closest friends who often couldn’t understand what was happening to my Dad. In order to preserve many of my Dad’s friendships, my Mom had to explain to his friends all they were doing to try and figure out what was wrong with Dad. His closest friends finally understood but I could see with my own eyes how my parents’ social circle was slowly shrinking as many “acquaintances” found it unrealistic how my Dad could be the “life of the party” one night and bedridden the next.
Even my Dad’s own family started doubting him when he couldn’t attend various important family functions and had to cancel at the last minute. My Grandparents, however, listened to Mom and eventually the stories she told them about Dad jogged-free some long-ago forgotten memories they had of my Dad’s youth when he had demonstrated similar behavior like abdominal pain, extreme lethargy and inexplicable joint pain. But they explained to Mom that Dad had been a prolific athlete as a kid and he always seemed so happy so they never had reason to investigate any further.
But now my Grandparents felt terrible that they might have missed something in my Dad’s teenage years which, if brought to the attention of a doctor, might have spared Dad so much suffering. But Mom told them if it took doctors years to figure it out now, there’s no way they would have identified it back then. Oddly, I think that experience brought my Mom closer to my Dad’s parents because they respected all my Mom was doing to help my Dad figure out what was wrong and also because she spent a great deal of energy trying to explain it to everyone else in his life. They were 100% behind Mom and Dad’s “diagnosis journey.” His two (2) sisters, my aunts, however, were very skeptical and this always created tension at family functions. Mom never explained to me why Dad’s Mom and Dad were so supportive yet his sisters were not but I think it has to do with more grown-up stuff involving jealousies, ego and spousal issues.
Digesting Popcorn marks the end of the “Diagnosis Journey”
Given that I’m still refining my walking skills and repeatedly fall when I get adventurous and try to change direction, I don’t have many play-dates so my best friend is my Dad. Even though my name is “Michael,” he always calls me “buddy” or “pal.” When he does “fix-it” work around the house, I just sit and watch, but he makes me feel like WE finished building that bookcase or model airplane. But I’m worried about him. I don’t have much experience being around adults but it can’t be normal to have so much energy one day and then feel so tired the next that you can barely walk up a flight of stairs. In fact, when my Dad gets that tired, he always says the same thing, as if each time is the first time he suffers from such extreme lethargy and he’s marveling at its pervasive and comprehensive grasp on his ability to function normally: “My legs feel like they weigh 1,000 pounds each.” Then there’s the bathroom trips. Some days he’s completely normal and we have so much fun together but more often than not he’s racing to and from the bathroom. Sometimes he may go 20-40 times a DAY and afterwards he’s always drained of energy.
But just the other night, things clearly entered a new phase in terms of placing a name to my Dad’s medical problems. Me, my Mom and Dad were hanging out in the living room watching a pay-per-view movie and eating popcorn trying to relax. But I could “smell” that my Dad was having “accidents,” just like me. I wanted to loan him one of my diapers, which I had thankfully grown out of, but there seemed to be more going on with him on this particular night than just his frequent trips to the bathroom. He soon began having such severe abdominal pain that it became noticeable and my Mom told me it was time for bed and brought me to my bedroom because I kept asking her with increasing concern, “What’s wrong with Dad?” It was very scary to see my Dad in such a painful and vulnerable position.
Before my Mom got me out of the room, however, I caught a glimpse of my Dad lying on the floor in the fetal position trying to “bare down” on what seemed like intense cramps. I had seen him do this before and once he explained what he was doing but I never saw him do this with a look in his eye like he wasn’t sure the cramps were ever going to end. Even though my Mom led me up to my bedroom and smiled the entire way like she was taking me to a party, I could sense her fear as well. After she made sure I was otherwise occupied with a video game, she returned to my Dad in the living room and I secretly followed behind her so I could see my Dad. When I carefully peeked into the living room, I saw my Dad groaning in pain and even crying. He was still lying in the fetal position and I heard my Mom tell him she had never seen him this bad and she was scared so she was calling an ambulance.
I never saw Dad cry before and that petrified me. I guess my Mom felt the same way and in just a few minutes an official-looking van with rotating and flashing lights came to the house to pick my Dad up to take him to the nearest hospital. There was a sense of urgency to the situation as each person who came with the van apparently had a specific responsibility yet everyone calmly but deliberately completed their tasks. But my Dad had everyone stop for a moment when he looked at me and told me not to worry, even as he held his stomach with one hand and tried to hide his tears with the other. “I cry all the time,” I told him, “there’s no reason to be embarrassed.” I tried hard to hide the tears starting to run down from my eyes when I spoke to him. He started to laugh but before we could enjoy the moment, the extreme pain must have kicked in again and the people driving the van, gently, but with deliberate purpose, got between us and started to take over the situation by performing their various tasks. It was frightening to watch and even scarier to listen to them talk on their walkie-talkies about needing to bring my Dad to the hospital “STAT.” Then as they shut and secured the doors keeping my Dad in the van, they said something into the walkie-talkies to the effect of: “Possible perforation on the way.”
The systemic effects of Crohn’s Disease explains a lot
When those very nice people from the van with the sirens on top carried my Dad away to the hospital on some stretcher as if he were a king, I knew this hospitalization was going to be different than all others before it. With nothing to do during the next day but hang out with Lucky, I decided to get up early and create a play station area near my Mom in the kitchen so I could hear all of her phone conversations. Friends, family, and even neighbors, who had seen all the commotion with the van and its flashing lights, were calling to inquire about my Dad’s health. That’s when I overheard Mom telling a friend how concerned she was ever since the doctors started telling her that Dad might have this stomach illness called, “Crohn’s Disease” and that sometime soon, he might need surgery.
Apparently a few weeks prior to this emergency hospitalization, my Mom and Dad had finally found a doctor who put the jigsaw puzzle together and tentatively diagnosed him with Crohn’s Disease. They were careful never to discuss it in front of me because I think they were finally catching on that I understood everything they said and hearing THAT would have terrified me. But now that the genie was out of the bottle, Mom didn’t mind discussing it in front of me so she used the phone to ease her nerves by sharing all she knew with those she loved. Most of the phone conversations were dominated by her trying to explain to friends and family that the gastrointestinal illness “Crohn’s Disease” is actually a chronic, incurable, autoimmune disease which had systemic effects due to my Dad’s abnormal immune system. While this explained many of the seemingly unrelated and unpredictable symptoms Dad had been enduring, and it converted many of the skeptics rather quickly, I didn’t understand many of the words Mom used but judging from her unstable voice, I was now more worried than ever about my Dad.
The Stress of a long Crohn’s Disease “Diagnosis Journey”
If there was ever any doubt that my Dad’s problem emanated from his intestines and immune system, and there was, it would be erased during this hospitalization when he was admitted for a suspected perforated intestine. Even though I didn’t understand many of the words being spoken around me, the more I learned about Crohn’s Disease, the more it sounded like the diagnosis which best explained my Dad’s unpredictable health, why he spent so much time in the bathroom and why he was often too tired to play with me when he came home from work. It also explained the several other previous hospitalizations I had heard about which occurred when I was still in my Mom’s belly. I also began to understand how the stress of being so sick coupled with being doubted by very smart doctors had created tension between him and my Mom. I can’t imagine my Mom ever doubting my Dad but, she’s only human, so, when the top doctors in New York City repeatedly told my Mom and Dad that all he kept complaining about couldn’t possibly be true, that had to complicate their relationship.
The diagnosis of Crohn’s Disease was a “Relief” and “Vindication”
My Mom was also strangely “relieved” that all doubts had now been lifted from the tentative Crohn’s diagnosis as she said something like “at least we finally have the correct diagnosis” because despite several previous hospitalizations and my Dad unequivocally complaining of various symptoms, the doctors were previously unable to correctly diagnose my Dad. Incidentally, I also overheard that this “diagnosis journey” pre-dated me which meant my Dad had been suffering from these undiagnosed horrific symptoms for at least three (3) years. My Dad’s lucky he has a partner like my Mom who stood by him when many others must have thought he was a hypochondriac or just plan crazy.
Generally, most doctors they had seen previous to my Dad’s current “Gastroenterologist” thought he either had Irritable Bowel Syndrome, Fibromyalgia, Lupus, Advanced Lyme Disease or Chronic Fatigue Syndrome but, as I heard my Mom tell it, none of them truly believed everything my Dad was telling them. The other doctors thought there was nothing wrong with him other than a “nervous stomach” which he could control better if he had a less stressful job since meeting his sales quotas every month was an ongoing tense conversation topic almost every night at dinner.
I also heard my Mom tell one of her friends how frustrated she got when some doctor with “the personality of a handball” (those were my Mom’s words, not mine) told them there’s nothing wrong with my Dad and he is causing all of his own problems due to the combination of his diet and the manner in which he is handling the stress from his job. This “handball” doctor didn’t believe my Dad’s symptoms were real as he thought they were too varied to be connected to one particular diagnosis. Another doctor, she said, who cost a “small fortune” to consult with, thought my Dad’s medical problems would be resolved by Psychological Counseling. Basically, that doctor was telling my Mom that my Dad was crazy. After hearing these heart-breaking “diagnosis journey” stories, I started to understand why my Mom was relieved that Dad was finally being treated by a doctor who believed him as he viewed Dad’s multi-faceted symptoms as a “textbook case of Crohn’s Disease.”
Putting Crohn’s Disease patients on the Defensive
I remember the doctor who delivered me and other than the gentle slap on my chest she gave me to get my lungs started, I was so impressed by the manner in which she comforted my Mom during what I’ve been told was a difficult delivery. I felt like some “special empathetic person” had helped my Mom bring me into this world and as a result I would be such a special compassionate person. After that experience and watching my Dad suffer for a few years, I thought doctors were supposed to try and give patients answers to their medical problems but according to my Mom, some of my Dad’s doctors were putting him on the defensive as if he had caused the problem. At some point, thought, I remember my folks agreeing to be “resilient” about the situation by agreeing to trust Dad’s body. I never knew what that meant until I heard my Mom refer to their “diagnosis journey.”
The Slow & often Sad Diagnostic Process of Crohn’s Disease
As for Dad’s symptoms, I had either witnessed them or heard my Mom and Dad talk about them. With all the current technological diagnostic equipment, it’s a shame no one was able to group together Dad’s symptoms sooner so they could be viewed as parts of a larger and collectively more serious medical problem, like Crohn’s Disease. But apparently there is no definitive test to determine Crohn’s as it is part diagnostic, part physician experience, with the remainder left to be determined by the art or science of medicine which enables doctors to make intuitive, educated guesses, when necessary. Then, after observing the patient continue to suffer these brutal collection of symptoms, the diagnosis is confirmed.
Patient input is critical to the diagnosis of Crohn’s Disease
You’d figure such diagnostic suffering would not be necessary in this day and age but with Crohn’s Disease the patient’s input is critical to the diagnosis. Yet, my Mom and Dad had been so specific about his symptoms and suffering, and in retrospect 100% accurate, according to globally-accepted information inside pamphlets describing the symptoms of Crohn’s Disease published by the Crohn’s & Colitis Foundation (CCFA) which are given to newly diagnosed patients, yet most doctors either didn’t believe him or they were wrong about his diagnosis. Now I understand why some doctors thought my Dad needed to see a Shrink because going through that diagnostic process would make anyone go insane.
The Main Symptoms/Effects of Crohn’s Disease
Based on observing my Dad over the past 2 years or so, as my memory about year one (1) of my life is still a bit foggy, my Mom’s recounting of it all on the phone to friends and family and the contents of that CCFA pamphlet, which my Dad read out loud to me when we visited him in the hospital to ease his fears I thought his suffering over the past few years made him out to be some type of Martian or wack-job, the general symptoms of Crohn’s Disease include: persistent and/or uncontrollable diarrhea; rectal bleeding; unpredictable/urgent need to move bowels; severe abdominal cramps and associated severe pain; and constipation which sometimes got so bad that my Dad’s belly became grossly “distended” and he looked like Santa Claus. I always thought that was so funny until I realized how painful it was for Dad.
Another symptom, which seemed to be why Dad was taken to the hospital, is inflammation of the intestines so severe that it causes the gastrointestinal (GI) passageway for food, air and water to become so narrow, Dad would painfully feel anything trying to pass through it. If there was a blockage of some sort brought about by the inflammation, that narrow passageway became like a kink in a garden hose and nothing got through. Always compounding this problem is the human body’s process of “peristalsis” which helps keep things moving down the GI tract. But when peristalsis comes upon a blockage, the pain of constantly trying to pass through that blockage or “obstruction” could be unbearable. In some rare instances, the pressure would build up from repeated attempts at trying to get through the obstruction that it would cause the Crohn’s patient to “perforate” his intestines. This means a hole is formed in the intestine and then the contents of the intestine start to leak into other parts of the body potentially causing life-threatening infections. This is why my Dad’s current situation was considered an emergency as the people who transported him to the hospital thought he may have perforated his small bowel.
Some Inflammatory and Systemic effects of Crohn’s Disease
In addition to the GI symptoms, Dad experienced such severe rheumatic-type joint pain that he’d see an orthopedist but he or she never could help him because all along his problem was caused by his Crohn’s Disease which came with the symptom of the sudden onset of often temporarily disabling joint pain. This aspect of Crohn’s Disease was also unpredictable in that one day me and my Dad would clean out the garage together but the next day he’d have to back out of a promise he made to Mom that he’d set up the outdoor furniture on the patio deck because he was in too much pain to do so. I know how much he hated breaking promises to Mom but his Crohn’s Disease made it impossible to even create reliable “To-Do Lists” for fear Dad would have to rest on a day he planned and promised to do anything physical or to be anywhere but at home close to his bed and bathroom.
With Crohn’s being an autoimmune disease, my Dad’s body is unable to normally “fight” inflammation and all the typically prescribed Over-The-Counter anti-inflammatory medications always made his stomach very sick. In such instances, my Dad was forced to only treat the pain caused by the inflammation or he looked to alternative medicine methods such as Acupuncture for answers. While this inflammation problem seemed localized to his knees and hands, Dad also complained of a debilitating condition in his lower back which was subsequently diagnosed as “Sacroiliitis,” which is a very painful inflammation located at the sacroiliac joints and is common amongst Crohn’s patients. The sacroiliac (SI) joints are in the lower portion of the spine, below the lumbar spine, and there is no effective treatment for this condition which my Dad can tolerate other than injections of steroids aimed at reducing the inflammation of the SI joints and taking pain medications to ease the pain. When this happened, Dad walked around the house as stiff as a board and the amount of time it took to quiet down the inflammation was as arbitrary as the amount of time it took to appear as a problem.
Most recently, though, my Dad found Acupuncture very successful in at least shortening the duration of each Sacroiliitis episode. Dad also often had problems with his eyes as the systemic inflammatory effects of Crohn’s Disease caused otherwise inexplicable painful swelling in and around his cornea. These same systemic effects also caused my Dad to have Cataract surgery in BOTH eyes at a very young age. Usually Dad had concurrent GI symptoms when his Sacroiliitis acted up or his eyes bothered him but many times these Crohn’s-caused problems would be standalone issues. I imagine describing all of this to a new doctor made it difficult to diagnose Dad with Crohn’s Disease and this “difficult to diagnose” problem became almost like another symptom of the disease. Suffice it to say, after that day I overheard my Mom explaining the multi-faceted effects of Crohn’s Disease, I never forgot how severe or pervasive it could be and I also learned how to spell a word not many other adults could spell!!!
Crohn’s is an “Autoimmune Disease” – What does that mean?
Now that everyone heard about the ambulance, my grandparents called to see how my Dad was doing but Mom put up a brave face not wanting to overly concern them with the harsh realities of Crohn’s Disease. She said all the right things, so as far as they knew, my Mom and Dad were still on their diagnosis journey. My Mom figured she’d tell Dad’s folks after he was formally diagnosed and feeling better. But she told her friends EVERYTHING and I couldn’t help but crawl over and listen more intently as the list of medical maladies associated with Crohn’s Disease seemed to never end. But it was difficult to hear through Lucky’s seemingly non-stop whining about being bored eating the same food night-after-night (that’s right, kids my age can converse with their own dogs). In that regard, I heard my Mom say things like Crohn’s is really an incurable “autoimmune” disease whereby my Dad’s immune system over-reacts to being stimulated such that it starts to attack itself. When I heard that I got scared because there’s nothing my Dad can do about that. I wondered if I could somehow help him with that.
Some of my Mom’s more superficial friends, who usually did all the talking and were unaccustomed to listening, blamed it on all the job stress my Dad deals with as a salesman who must meet his sales quota every month. That got my Mom upset because the doctors told her that stress has nothing to do with Crohn’s flare-ups or with their severity. But my Mom knew her friends meant well; they just didn’t know what else to say when they listened to my Mom tell them, for example, how the most effective of the Crohn’s medications often cause side effects so severe they rival Crohn’s in terms of their pervasive and severe effects. Some also can cause the scariest of short and long-term medical problems such as pancreatitis, different life-threatening cancers, liver problems, potentially lethal lung and respiratory problems, other auto-immune diseases, etc.
Crohn’s Disease & Steroids – Great Medicine with BAD side effects
One of these Crohn’s treatment drugs is a steroid, which in the pill form is known as the steroid “Prednisone” but in the hospital, when given intravenously for a more immediate effect, it goes by different names. It is used routinely by the doctors to reduce intestinal inflammation as a way to stave off surgery. However, its ability to quickly reduce inflammation comes at the long-term cost of likely weakening my Dad’s bones as he aged. As a result, the doctors use steroids for brief periods of time to attack the worst part of a Crohn’s flare-up in much the same way, and in similar quantities, a normal person’s body would naturally produce it to counteract any deleterious inflammation. Steroids are also used, in one form or another, to combat all the other systemic inflammatory problems my Dad has such as steroid injections for his Sacroiliitis and steroid eye drops for his aforementioned eye problems.
Crohn’s is an Inflammatory Bowel Disease (IBD)
I thought steroids were drugs athletes took to enhance their athletic performance but with Crohn’s Disease they are very important tools used by doctors to “manage” the disease since it cannot be cured. After all, Crohn’s Disease is classified as an Inflammatory Bowel Disease (IBD). Unfortunately, the amount of steroids used in severe Crohn’s cases like my Dad’s can result in the need for eventual Hip Replacement or Spine-Fusion Surgeries at relatively young ages such as in the early 40s but that is commonplace for patients with Severe Crohn’s Disease.
Surgery is a treatment of last resort for Crohn’s Disease patients
I also heard the frustration in my Mom’s voice as she tried to explain why surgery is a last resort for Crohn’s Disease patients because we all have approximately twenty-two (22) feet of small bowel and the surgeons can’t keep taking out the diseased portions of the intestines for fear that a patient like my Dad will then have to get an Ostomy of some sort if he runs out of small bowel. I didn’t understand this so I asked Lucky because he has an encyclopedia-like brain and tends to know about medical stuff since for the first few years of his life he lived inside a big Veterinary Clinic until my Dad “rescued” him. This is what Lucky basically told me: An ostomy refers to the surgically created opening in the body for the discharge of body wastes and there are many different types depending upon which part of the gastrointestinal tract must be removed such as the small bowel, colon or large intestine. So an ostomy sounded like a viable medical treatment but it radically changes the person’ lifestyle. I hoped my Dad didn’t need one but I know he could deal with it, if he had to.
Being hospitalized for “Crohn’s Disease”
Sensing my eagerness to see Dad, my Mom finally took me to see him in the hospital. She tried to act all cheery when we got there, and so many pretty nurses pinched my cheeks that for a few seconds I forgot why we were there, but I knew Mom brought me to try and deflect the feeling of hopelessness she and my Dad had regarding his current prognosis and his unpredictable future with Crohn’s Disease. When we got to my Dad’s hospital room he looked different as he had an “NG Tube” inserted through his nose down into his stomach. He was in too much pain to speak, or when he tried, he slurred his words and sounded a little like Lucky. I tried not to laugh. His doctor was there to greet us and after exchanging pleasantries he explained my Dad’s situation. I understand most things adults say but that seemed boring so I tried to take a nap until he gave us the example of a “kink in a garden hose.”
In short, he told us that just like the water trying to pass through the blockage in the garden hose caused by the kink, my Dad’s intestine was having trouble trying to digest the popcorn, which is a major no-no for Crohn’s patients. Each time his body naturally tried to move the popcorn down his intestines, his intestinal obstruction would not let that happen and the result was severe pain for my Dad. In the past hospitalizations, there was always something getting through so even though he had great pain during those hospitalizations, he only had “Partial Obstructions;” this time he had a Full Obstruction because nothing was getting through. They even feared he had perforated his intestine which would have meant emergency surgery, but he had not.
So the plan was to first siphon out whatever was in his stomach to alleviate the pressure which kept causing Dad pain when it came up against the obstruction. This included “air,” which, when caught inside the body, is typically expelled as gas but if it got stuck, it was just as painful as food. That’s what the NG Tube (Nasogastric Tube) was for and I can’t even imagine how they inserted it through my Dad’s nose down into his stomach while he was awake!! I guess when you are in so much pain it doesn’t much matter what they do so long as it relives the pain, which my Dad said the NG tube did almost immediately. The doctors then started giving my Dad intravenous steroids around the clock hoping such an intense course of drug therapy would reduce the abnormal inflammation in his intestines and then help my Dad “open up” by calming down the “angry” inflammation which was making even the digestion of water painful.
At the very least, this emergency episode with the popcorn placed my Dad inside a hospital during the absolute worst part of a flare-up and because of that the doctor was able to perform various diagnostic studies to confirm a diagnosis of Crohn’s Disease. This was the good news for the day.
The 1st Surgery for Crohn’s Disease
But after ten (10) days or so, nothing changed and through those various diagnostic tests they were able to identify a specific area of his small bowel which was causing the obstruction. This same area had been the culprit in previous hospitalizations so Dad wound up having surgery to remove this part of his small bowel. Everything went fine during the surgery but the post-operative process was difficult as my Dad woke up from the surgery with an NG Tube in his nose and a Foley Catheter attached to his penis so he’d be able to rest in bed instead of getting up to go to the bathroom. At the same time, they wanted him to get up and walk with all these contraptions attached to him. Then he also had to deal with the surgical pain of having his abdomen cut open. It was very difficult.
After the 3nd day post-op, the doctors encouraged him to start sucking on ice-chips to see how his body tolerated it. Then they had him try clear liquids and then full liquids. Once his body tolerated those, the doctors waited for his intestines to “wake up.” The way they measured this was by him “passing wind.” Once that happened, they finally started feeding him very soft foods. This went on for a few days until they were able to slowly advance his diet. If there were no negative consequences to him eating, he was eligible to be discharged after he had a bowel movement. Thankfully, that happened approximately six (6) days after the surgery. It was funny, for what seemed like so long my Dad couldn’t stop going to the bathroom and he had surgery to fix that problem, but now I was rooting for him to go to the bathroom again so he could come home.
Managing Crohn’s Disease Post-Operatively
It had been a few weeks since my Dad was back at home from the hospital after his surgery. He had some pain from the surgery and Mom told me and Lucky to be careful how we played with him but other than that, it was great to have him home and healthy. He was no longer running to the bathroom 20-40 times a day and it appeared the surgery fixed all his problems. But just as I was getting comfortable with my “new and improved” Dad, he started getting tired without notice and certain foods started causing the same old GI symptoms. While my Dad had a few follow-up visits with the surgeon, he had not seen or spoken to his Gastroenterologist since he last saw him in the hospital. So he called him to tell him about some “issues” he had and shortly thereafter my Mom scheduled an appointment with him.
I had never before seen my parents sit together in a doctor’s office discussing Dad’s Crohn’s as most of what we now knew were his Crohn’s Disease episodes were emergencies and/or they involved a hospital at one point or another. So I didn’t understand how the doctor could help my Dad from behind a desk. They took me along because the babysitter fell through at the last minute so Mom warned me to be on my best behavior so I just listened while sitting on my Dad’s lap, holding has hand. Over the next twenty (20) minutes the doctor laid out my Dad’s options because he felt his Crohn’s was too aggressive and severe not to be treated with some type of “preventative” medication. While the surgery was a success, he said, it was quite possible Dad’s Crohn’s Disease could come back at any time and affect a different part of his intestine. Moreover, he added, my Dad would always have an autoimmune illness so he’d still have to manage his health very carefully. My Dad asked many questions most of which the doctor had no specific answer to besides, “It depends.”
When my Mom chimed in asking for a more detailed explanation, the doctor, carefully alternating his attention between my Mom and Dad, very kindly and compassionately said, “Crohn’s Disease is a complex incurable autoimmune disease which has a broad spectrum of severity and it affects people differently. Over time, we will know the answers to many of your respective questions through trial and error.”
Then, to provide my parents with some perspective, he said that many Crohn’s patients get a Crohn’s complication called a “fistula” which is an abnormal connection between different body parts. He said fistulas can develop between your intestine and skin, or between your intestine and another organ causing continuous drainage of bowel contents to your skin or another organ. In some cases, a fistula may become infected and form an abscess, which can be life-threatening if not treated. Then he said, “Be thankful you don’t have a fistula because life can be miserable with one. You have an aggressive form of obstructional Crohn’s Disease so let’s just treat that and take each day as it comes. You may not need to see me for 6 months or you many need to see me sooner. Only time will tell.”
Managing Crohn’s Disease with Medicine
My Mom’s jaw was still dropped in shock after hearing about the possibility of developing a fistula but my Dad grabbed her hand and comforted her. The doctor had made his point so the rest of the conversation focused on devising a medication strategy which would treat the underlying Crohn’s instead of the dangerous manifestations of it such as an obstruction or an anal fistula. So they first started talking about my Dad taking one of various available immuno-suppressive drugs which are basically used to slow down the immune system from being over-active and attacking itself. First discussed was immune-suppressant drugs like 6-MP and Imuran but the doctor said it took those drugs 3-6 months to build up in one’s system to have an effect and he therefore was concerned Dad might obstruct during that rather long waiting period given his aggressive disease. For that reason, they collectively ruled out that combination of drugs for Dad.
These drugs, like all the immune-suppressant drugs being discussed, also came with a laundry list of possible lethal side effects because slowing down one’s immune system left that person with a severely compromised immune system but that is the way Crohn’s has been effectively managed over the years. It seemed counter-intuitive to weaken an already abnormal immune system but my Mom and Dad had performed a ton of research before this meeting so they were prepared for the discussion. I also remember them discussing another similar drug, Methotrexate, and it worked faster but the potential side effects for my Dad were even worse given some family medical history.
Then the doctor said they had developed new “Biologics” which were drugs often successful at putting Crohn’s Disease into Remission. He seemed to be pointing my Mom and Dad in that direction beginning with the drug Remicade. It involved having to get it infused every 6 weeks or so but many Crohn’s patients had been doing very well on it. If that didn’t work, there were other Biologics. These drugs also came with a long list of side effects but full Remission seemed like paradise and after hearing about the fistulas, my Mom and Dad quickly agreed to start Remicade treatments as soon as possible.
I’ll never forget what the doctor said as he shook their hands to say goodbye. He looked them each in the eye and said:
“Let’s not kid ourselves, Crohn’s Disease is a very serious disease. You’d never know it from the advertisements you see on television but it can be vicious with devastating physical, psychological, emotional, professional, financial, social and familial effects. But great progress is being made in research and we are CLOSE. So, ‘the longer you live, the longer you live.’ By this I mean, do what you must to get to tomorrow and if you do, there is a chance there will be newer, better drugs which may even cure Crohn’s Disease. Good luck.”