Now For A Word from The Surgeon’s Table
If you follow me on social media, or have read this blog for a while, then you know I have Crohn’s Disease. Well, today is the day I’ve been dreading since I was first diagnosed in April 1992.
It’s time to get something removed.
I had always made it a point of pride that I would leave this Earth with all of my parts more or less intact. But that’s not to be. My terminal ileum (that’s the end of the small intestine, the part that connects to the large intestine) is essentially dead and has been causing me all sorts of problems since October.
So, out it comes. The doctors also told me there is a good chance they’ll need to remove the ascending colon, as well. They just can’t tell from the CT scans, but will know better once they get in there and see.
Now, I’m not so worried about what they’re taking out (I’ve kind of resigned myself to the changes I’ll have to make), as simply waking up. One of the dastardly things Crohn’s has done is given me pulmonary embolisms and pulmonary hypertension. They refer to these as “extra-digestive manifestations.” That doesn’t change the fact that breathing isn’t as easy as it used to be, and general anesthesia is especially dangerous for me. As in, might not wake up dangerous.
I’ve placed myself in God’s hands. If he wants me home, there isn’t much you or I can do about it. I always figured that with all the times I’ve defied death until now that God had a reason for keeping me on this planet. It could be this surgery is that reason. My medical team almost sounds like a bad joke: “a Muslim, a Hindu, a Catholic and an atheist walk into a surgical theater…” It could be my surgery will do more for world peace than all the diplomats at the UN have managed in 75 years of talking.
Anyway, by now I’m on the table and the doctors are doing a thing. If you’re the praying type, I’d appreciate if you would lift up my medical team. Oh, and don’t let the big guy upstairs forget I am still needed down here.
Thanks everyone. See you on the other side!
It’s Never Easy to Say Good-Bye
As I’m sure many of you know, I’ve dealt with an aggressive case of Crohn’s Disease for almost 26 years. As much as I hate to admit it, I’ve won most of the battles (including a couple when, by all rights, I should not have survived), but the disease is winning the war. That’s why, as of today, I am officially retired.
This hasn’t been an easy decision for me. Willingly giving up my business is one of the most gut-wrenching decisions I’ve ever made. It isn’t one I did on the spur of the moment, but really, my body made the decision for me. I was strongly contemplating it last Fall; by Thanksgiving it was fairly obvious which way I was leaning. I had pretty much made up my mind by New Year’s. My hospitalization in January only served to confirm my decision.
Most people nowadays are at least aware of Crohn’s Disease and know it has something to do with frequent bathroom breaks. That’s a far cry from when I was diagnosed in 1992, when almost nobody had heard of it (I certainly hadn’t). What most of you probably don’t know is all of the other ways Crohn’s can play hell with your life. Over the past 6 years, this disease has shown itself not content with ruining my digestive tract. It’s spread (in order of appearance) to my eyes, my vascular system, my bones, my heart, my lungs and my endocrine system. The most recent organ to feel Crohn’s wrath is my pancreas, which has my blood sugar yo-yo’ing like a hyperactive toddler on a teeter-totter.
Then there’s the chronic fatigue and chronic pain. Sadly, there isn’t much anyone can do about the fatigue. I power through as best I can, but between the sugar spikes and pain I find myself expending energy just to sit upright. As for the pain, literally every joint in my body – from my neck to my ankles – is constantly throbbing, aching and burning. In a way, it’s a good thing: I don’t notice the pain in my gut nearly so much. When it gets unbearable, I’ll take a couple of Tylenol. The doctors have offered me a wonderful cocktail of Tramadol and Flexoril, but as long as I can grin and bear it, I’ll prefer bourbon and rum in my cocktails.
Of course, since I was confirmed legally blind in November I’ve lost my driving privileges. To be honest, that wasn’t a huge blow. I’d noticed months before that my eyesight was failing and drove sparingly. But it’s still just one more reason that retiring now makes sense.
Finally, there is my family to consider. Fortunately, my sons are all doing reasonably well for themselves. But I can’t work myself into my grave so long as my wife is willing to stand by my side. And I’ve cheated death too many times not to feel his grip on my shoulder. Hopefully, God will hold off a while before He decides He needs another Marine to guard the Pearly Gates.
As for what the future holds, well, I don’t really know. I know I need a heart valve replaced; I’ve begun the testing to see if the rest of my body can stand the strain. I suppose I might do more woodworking and fishing. I’ll probably have time to read the 40 or so unread books in my Kindle library. And I suppose we’ll start looking at property in warmer climes. Even though this winter has been relatively mild, the simple fact is my body starts to shut down when the mercury dips below 50°.
So, it’s time to say so long to Rothfeldt Consulting. It’s been a good ride, but all good things must come to an end.
Looking Back to Look Ahead
This is going to be harder than I thought. I never considered the possibility that I would have difficulty managing to find the energy to write one measly post per day.
Things have certainly changed for me over the past few years. As a result, what I was once – how I defined my life, how my life was defined by others – has just as certainly changed. My Twitter description, “Marine, Yankees fan, Libertarian, Small Biz Owner, cyclist, tech geek & Crohn’s patient. FAIR WARNING: I’m opinionated” is a great reflection of my life – as it existed 5 years ago. But my current reality is not the same. If anything, I spend more time being a Crohn’s patient than anything else now, where before it was a sidebar to my life. Although I’ve owned several small businesses in the past, I cannot even manage to find the energy to run one now, even on a part-time basis – that would have to be amended. One of those businesses was a bicycle shop; it was a successful little store that allowed me to take one of my life’s passions and earn a living. As recently as six years ago I completed the 235 mile High Point to Cape May ride, but today I get to carry oxygen with me. I can’t even ride a mile. Can I possibly call myself a “cyclist” in light of that?
Then there’s my LinkedIn profile. To be perfectly honest, the only reason I even maintain it, is there are literally dozens of terrific people I’ve worked with in the past – and if simply being connected to me can help their careers, then I’m happy to oblige. It is a bit of self-aggrandizement, as are all marketing sites. I am constantly reminded (usually by the emails and phone calls from HR professionals) that I once was considered one of the very finest professionals in my field. It was a lifetime ago. It is not my current reality.
So where do I go from here? Well, that depends on a few things that I cannot control. In some ways, things have changed very little for me: I am still a Marine and (much to my friends and family’s consternation) as ornery and determined as ever. I don’t know if I’ll beat this infernal disease, or if it will beat me, but one thing is certain. We are locked into mortal combat with only one possible winner. In the meantime, the Good Lord gave me one gift that has proven indispensable over the years – the ability to reinvent myself as needed. Over the years, my profession has changed to fit the circumstance. From tech inventor to retail sales, project management to short-order cook, I’ve always found a way to keep myself occupied. Just as importantly, the founding ideals of our nation have allowed me the time and space to develop and thrive in those roles, as disparate as they might be. Because of that, I am confident that whatever the future may ask of me, I will be successful.
Life and Liberty
Those of you who follow me on Twitter or Facebook know I recently spent 8 days hospitalized once again. My ongoing battle with Crohn’s Disease, one that has consumed the last 22+ years of my life, remains unrelenting. Like all of such events over the past three years or so, this hospitalization didn’t end with long-term remission of my disease activity or even the hope of a near term remission.
I could complain and I doubt many of you would be upset if I do so. But I’ve never really been one for complaining about things beyond my control, nor do I think that really accomplishes much. Certainly, venting can ease the mind but it’s only a temporary relief. I pointed out once before that life’s recent turns have, if anything, made me more reflective and this most recent turn only served to reinforce that attitude.
But reflective of what, exactly? Well, in a word: EVERYTHING.
Faith, religion, why we’re here? Yes. My personal history, my family, friends and relationships? You bet. Medicine and medical research? Naturally. My overarching view of our world, our past and our future? Certainly.
There are only so many times a man can stare at his own mortality without contemplating the wonder and the why of it all, I suppose. Or the alternative could likewise be true: all these brushes with Death’s door may have already left me insane – in which case, you’ve been reading the rantings of a madman. We’re about to embark on a journey to find out which is true over the next few days and weeks. I’ll leave the decisions about my sanity to your discretion – which considering my readership, may be the boldest move I’ve made yet!
For a blog that spends as much time on political matters as mine, you may be wondering how I managed to leave any mention of that topic from my list of contemplations. But here’s your first point to ponder in judging my perspicacity: isn’t the political the one realm where we publicly express our personal philosophy?
Tomorrow, we begin…
Liberty and Fairness
“The natural distribution is neither just nor unjust; nor is it unjust that persons are born into society at some particular position. These are simply natural facts. What is just and unjust is the way that institutions deal with these facts.” ― John Rawls, A Theory of Justice
Recent events in my own life have forced me to re-examine some of my most deeply held convictions. During the time I’ve been absent from this blog (wait – you didn’t notice???), four events in particular gave rise to self-reflection:
- Crohn’s Disease, with which I’ve done battle for 22 years, once again reared up and forced me to the sidelines
- My eldest son, who was born with a developmental disability, is now caught up in the nightmare that is the state mental health system
- I’ve rented a room to a family that is emblematic of all that is wrong with the way government abuses good people
- Another of my tenants passed away during the night
You’re probably wondering why I would spend the time to ponder what one prominent politician describes as “esoteric debates” when life brings such immediacy. You’re probably wondering further why I would take the time to write about that internal debate. The answer is that such internal debates are neither esoteric nor a thriftlessness exercise. It is by determining if our views are malleable to the events in our lives that we discover if our core values are the result of dogma or the sound exercise of judgement.
The overarching theme of President Obama’s tenure is that of “fairness.” Only, in Mr. Obama’s world, the fairness is defined by outcome; one in which those aggrieved receive what they deem to be their just share. This doctrine is exemplified in the policy objectives of his administration. Be it the underlying argument for Obamacare (that the only fair medical system is one in which everyone has health insurance), economic policy, the tacit embrace of the Occupy Wall Street movement, the management of foreign policy (attempting the equal embrace of islamist and democratic ideologies abroad) or dozens of other initiatives pursued, Mr. Obama is clear in how he defines “fair.” Further, his actions (including his insistence on defending the possibly unconstitutional and certainly intrusive domestic spying program) demonstrate a certainty that governmental institutions are the best method of obtaining this measure of fairness while denigrating the roles of other, traditional venues.
Unlike many of the President’s critics, I do not think he is an uncaring ogre bent on instituting a draconian new way of life on the American people. Although we disagree on most issues, I certainly applaud his efforts to afford all people equal protections under the law. I think it is indicative of his nature, in that he actually cares about the quality of life afforded ordinary Americans. I think most of my fellow countrymen have that same feeling and that underlying belief in his nature is the ultimate reason he won re-election – even though most of us remain opposed to his specific action plan.
I also think that more than a difference in political philosophy, we have divergent views on reality and possibility that slice to the core of our differences. The President is what might best be termed a government interventionist. Government Interventionism infects both the modern liberal and conservative movements. It is characterized by a belief that not only can the government positively effect outcomes, but that it should. While conservatives and liberals often have different goals in mind, they agree with the principle of a results-based system. As anyone who follows me on Facebook or Twitter is well aware, I have never subscribed to this view of governance.
My introspection of the past weeks has called me to wonder if, perhaps, this approach is best. One of the criticisms of Libertarians is that we are a callous bunch, uncaring about how life’s travails affect our fellow men. Those who know me personally know this isn’t the case. Of the root causes for my self-reflective journey, two involved people that I know cursorily. Yet, they are people who strike me as somehow getting less from life than their character would indicate they deserve.
Allow me to begin with the woman who died in her room last Wednesday. Although I knew her only a few months, what I did know belied her situation. She worked full-time (a rarity in today’s economy) and was well-respected by both her coworkers and employer, she had a large and close-knit family and she was outgoing, gregarious even. Yet, she died alone in rented room, the victim of a long battle with a chronic illness; in her case, diabetes. From what I could see, it was not a pleasant or painless death. She must have known she was in desperate trouble – I found her collapsed at the foot of her bed, in a position indicating she struggled to get to her door, with her phone fallen from her outstretched hand and smashed into bits. If we live in a results based society, why did she die in this manner? What could society have done differently that would have ensured that at the very least, one of her family would have been with her in her time of greatest need? At her funeral on Saturday, meeting her family and friends and seeing the outpouring of grief that overcame them all, I wondered why a woman so beloved by so many, who had done all society asked of her, should have been subjected to such a terrible death?
The week prior to her passing, I rented a room to a family of four. One room, four people, sharing a kitchen and bath with three other tenants. These are decent people, again doing all society says they should do. Both parents work and the mother attends nursing school; the children are incredibly well behaved (I wish mine had been so well behaved!). But they are victims of governmental bureaucracy as much as anything. The father openly admits to making mistakes when he was younger, which resulted in a felony conviction two decades ago. Since then, he’s done the things we tell him he should do: work to support his family, avoid the drama of street life, return to school and complete his GED. He would like to continue his education, but supports his wife as she works towards getting her degree. This is a family, in short, that is playing by all the rules our society dictates – yet they are reduced to living four to a single room, because it is all they can afford. The welfare system, the one that liberals tell us prevents this type of thing from happening and conservatives insist is too generous, is unavailable to them unless the father abandons his family. It is his decades old prior conviction that denies them access to it. Somehow, this result doesn’t seem fair to me.
Along the same lines, my personal struggle with chronic illness – in particular, a 22 year battle with Crohn’s Disease – has become much more difficult over the past two years. Over that time, I’ve had to shutter a business, spent nearly 8 months (cumulative) hospitalized and watched my family’s wealth get drained until we were destitute. I’ve rebounded some financially, but am in no way near the same fiscal position I was in 2011. Most of those around me think it unfair that my life has taken such a drastic turn, or that my reality is I’m likely wheelchair bound within the next two years and probably blind in less time than that. Certainly I wish there were a better prognosis.
Finally, there is my oldest son, Dennis. Some of my long-time readers are aware that he is what society euphemistically calls “developmentally disabled.” His reality is that he will never comprehend things the way you or I do. His IQ is 54; intellectually his development is equivalent to a second grader, emotionally he is at roughly the same stage as most 13- or 14-year olds. So while physically he’s a strapping 25 year old young man, his mind has yet to catch up to his body. Odds are that the two will never be in sync. This is the crux of his current problem. Because of his condition, he finds it difficult to express his feelings, except to occasionally blow up the way most 14 year old boys will. About 6 weeks ago, he found himself in a situation where he was being teased (not an uncommon situation, unfortunately) and lost his temper. The police were called; they followed protocol and brought him to the emergency room for observation. Which is where the nightmare began. Rather than checking his medical records, the hospital diagnosed Dennis as a violent schizophrenic and packed him off to the closest mental hospital. The doctor (I use the term in deference to his degree, not his competence) there confirmed the diagnosis, again ignoring his medical condition. A competency hearing was held, in which the doctor amplified his diagnosis to include the term “homicidal.” And so my son sits in a mental hospital, not understanding what’s happening or why as we fight to have him moved to another facility and have a new diagnosis issued that accounts for his disability. I’m not sure who would consider this outcome “fair.” If the President thought the justice system was ultimately unfair to the family of Trayvon Martin, I can’t see how he could consider this fair.
In reflecting on these incidents, each with an outcome which seems disproportionate in outcome to circumstance, I wondered if the results would be different were the fairness doctrine imposed by society replaced by libertarian values. Chances are that in three cases, the results would be the same but the perception would be different.
- In a Libertarian society, we would acknowledge that the young lady who died chose to live her final days alone. While there still would be sadness accompanying her death, it wouldn’t be considered unfair that she had neither friends nor family with her in her final hours.
- For the family renting the single room, society wouldn’t consider it unfair that a hard working mother and father would resort to housing their family in these conditions. In a Libertarian society, they would be celebrated as examples of how to face adversity.
- As for my health, nobody would consider it unfair that I’m sick and fated to becoming sicker. Unfortunate? Unlucky? Sure, those sentiments would be common. But the choices my family made in previous years were our own and left us in the financial position we find ourselves. I knew my health was precarious before launching my last business; it was our choice to take that route as opposed to my taking a job in what is a poor economy. Using Libertarian values, we took a calculated risk that proved unwise. But in the interventionist society we live in, we demonstrated incredible recklessness and need to be saved from ourselves.
Libertarians believe that fairness in opportunity is far more important than fairness of outcome. After all, if everyone is free to pursue their life’s goals – if they are truly at liberty – then the outcomes are inherently fair. Differences in outcome will have more to do with natural ability and desire than anything a government can do. While the odds are that the above situations would not be dramatically different than in a Libertarian society, there is one important way in which one of those situations would be better. The people above would be less constrained by a restrictive society. The family in one room may well be much better off, since Libertarians tend to look at most drug laws as counter-productive – meaning no felony record for the father. He would certainly have better employment opportunities without that black mark.
As for my son, a Libertarian society would probably mean all the difference in the world for him right now. Without the modern police state in which presumed innocence is nothing more than a tired cliche, it’s doubtful he would be where he is now.
So, yes, I’ve reflected and pondered. You’ve read my conclusions. You may not agree with them, but I end this period of introspection confident in my core belief that the equitable outcomes can only be guaranteed by the one truly fair system ever known to humankind. That is, that by believing in the individual and providing them with the liberty to achieve to their individual potential, a government does its best service to the governed.
So you want to talk pain?
I came across an article from Catherine Hinton that just may be the best description of the pain from which Crohn’s Disease patients suffer. I usually compare it to being in labor, but not being a member of the fairer sex I’ve relied on descriptions of that pain from my wife (and others).
Catherine begins her description this way:
“If you have Crohn’s Disease you are familiar with pain. Not just a ‘pain’, but the whole repertoire of pain sensations that the human body can manufacture. Sometimes you might be treated to a solo rendition that can be quietened down with over the counter meds, but more often than not Crohn’s pulls out all the stops and decides to delight you with a symphony performance that inclues the equivalent of timpani drums and death metal guitars. You might think that the pain is limited to bowels (it is after all Inflammatory Bowel Disease) but oh no, if Crohn’s can drag in other parts of the body, it will!“
I highly suggest you hit the link above and read the rest of her description, then share it with your friends and family. It’s both funny and highly accurate!
Crohn’s Disease: Know your symptoms
As a long time Crohn’s patient, I am often sought out for advice on handling the disease by newly diagnosed patients and their families. And while awareness of Crohn’s is much greater than it was twenty years ago, most people really don’t understand much about the disease or the way it impacts a patient’s life. So I’ve decided to write a four-part document that hopefully explains to new Crohn’s patients and the general public what to expect and how to cope. These posts cover the medical symptoms tips for patients living with the disease and tips for people who know someone living with Crohn’s.
In this post, I’ll cover symptoms.
Crohn’s Disease is, without a doubt, one of the more debilitating medical conditions around right now. For those unfamiliar with it, Crohn’s is an auto-immune disorder that affects the digestive tract. Symptoms include weight loss, frequent (and often uncontrollable) bowel movements, diarrhea, nausea, bloating, intestinal discomfort and pain (which can mimic appendicitis) and fatigue. Symptoms also include the typical aches, pains and fevers usually associated with the flu. Because it is an auto-immune disease, people with Crohn’s often find themselves later developing other auto-immune disorders – for instance, I have rheumatoid arthritis and developed hay fever about 7 years ago. I’ve met other patients who developed even more severe types of auto-immune disorders, such as lupus.
Very little is really understood about Crohn’s. Nobody knows why it occurs – there seems to be a genetic factor (an extra gene is found in about 90% of Crohn’s patients), but nothing has been completely ruled out. Ethnicity, diet and activities all may be related – or maybe not. Likewise, there isn’t a cure. What has advanced since I was first diagnosed 20 years ago is understanding how the disease functions and causes other functions of the body to stop. That has led to better treatment options and generally, a better quality of life for those of us affected. Once, the disease was thought more prevalent in women than men, but the rates of affliction, once adjusted for populations, are actually about the same. Almost every ethnic group is affected, although peoples of Asian and African descent have lower incidence rates than Caucasians.
Odds are if you’re a new patient, then you are in the 16-25 year old range: this is when about 80% of new cases are first diagnosed. (I was 6 weeks shy of my 26th birthday when first diagnosed). That being said, new cases are diagnosed in every age group. Since I’ve no personal experience with pediatric Crohn’s, I won’t pretend to offer advice for anyone looking for information about Crohn’s and young children.
Symptomatically, Crohn’s is similar to Ulcerative Colitis. The similarities often confuse a person only cursorily aware of both conditions, which often leads to them confusing the two. I’ve had past co-workers and current friends often assume that because Crohn’s and UC are related and so similar symptomatically, that they are the same. But when I’ve had severe flare-ups of the disease, they are often shocked when they come visit and find me hooked up to dozens of tubes and wires, all needed to keep me alive and stable.
The symptoms are where the similarities end. Both cause ulcerations (inflamed areas) to appear in the colon, but the ones from Crohn’s disease burrow deeper into the tissue and can appear anywhere in the digestive tract. In my particular case, the upper palate, gums, a section of the small intestine called the duodenum and another called the ileum are affected in addition to two spots in my large intestine and another in my colon. Another big difference: in severe cases of colitis, a type of surgery called an ostomy can be performed, curing the disease (although at a high price). For some severe cases of Crohn’s usually where the tissue is badly damaged), surgery is also done – but removing the affected areas doesn’t cure the disease. It will reappear in another area of the GI tract.
Since Crohn’s patients generally have difficulty digesting food, it isn’t uncommon to find them malnourished even when relatively symptom free (by the way, those of us in the Crohn’s community generally refer to these periods as being in remission). Unfortunately, the type of malnutrition can vary from patient to patient. The reason is because so many different parts of the digestive tract are affected and each part is responsible for processing different nutrients. Regardless, the malnutrition is a major contributor to all types of related problems. Since each part of the body relies on the digestive system to function properly, people with Crohn’s often suffer from other system breakdowns. Their hair, skin and nails can become dry and brittle; they may suffer anemia, dehydration, high blood pressure, osteoporosis – the list includes virtually every other organ in the body. Add in the side-effects from long-term use of some of the more common medications used to treat Crohn’s, and the results can be even more system breakdowns. For example, the use of Mesalamine drugs can lead to excessive (and particularly foul smelling gas). As for myself, repeated exposure to very high doses of corticosteroids has resulted in cataracts and osteopenia (the precursor to osteoporosis). The calcium deficiency from my Crohn’s along a Crohn’s inflammation in my upper palate and the drug cocktail I’m on, resulted in my losing all of my teeth before I was 30 (although, my dentures look damn good!).
Crohn’s Disease: Coping
As a long time Crohn’s patient, I am often sought out for advice on handling the disease by newly diagnosed patients and their families. And while awareness of Crohn’s is much greater than it was twenty years ago, most people really don’t understand much about the disease or the way it impacts a patient’s life. So I’ve decided to write a four-part document that hopefully explains to new Crohn’s patients and the general public what to expect and how to cope. These posts cover the medical symptoms tips for patients living with the disease and tips for people who know someone living with Crohn’s.
In this post, I’ll cover what living with Crohn’s is like.
Once diagnosed with Crohn’s Disease, odds are your doctor gave you some version of “you’re going to need to make some changes.” They probably prescribed a bunch of new medications and told you that you’ll need to take them for the rest of your life. You were told that you’ll need to make some changes to what you eat and what you drink. Since the odds are you’re still young, you’re probably feeling as if life is essentially over. That’s normal, but as I and millions of other “Chronies” can tell you – life isn’t over. It just got more interesting. If you haven’t read through the posts on symptoms and treatments yet, take a few minutes and do so now. One of your best weapons in the fight against Crohn’s disease is education and this is good place to start. I also suggest going through the Crohn’s & Colitis Foundation’s website. It is an invaluable source for information.
Your first major change is that you and your doctors are about to become fast friends. Before my diagnosis, I didn’t have a regular doctor. I was a typical, healthy 25 year old and only went to see one if there was something really wrong – and it had to be really wrong before anyone could force me to step foot into a doctor’s office. The gastroenterologist who diagnosed me was as strange to me as an alien who dropped in from Mars. He was a nice enough guy, but I didn’t particularly like him and because of that, wasn’t sure I should how far I should trust him. So rule #1 about living with Crohn’s: find two doctors that you not only like but can absolutely trust with your life: a gastroenterologist (for your guts) and a general practitioner (for everything else). Because how you handle those relationships will go a long way in determining how well you live your life. In my case, I’ve had the same primary care physician for 10 years now and GI doctor for 8. The reason is not only are they very good doctors, but we have a great relationship. They know me by sight, including my medical history. How well? About three years ago, I had my left knee rebuilt and was in the hospital for the pre-op when my GI doctor was racing down the hall past my room. When she spotted me lying in bed, she put on the brakes, turned around and walked into my room – concerned I was having a flare. Then she made sure my chart mentioned my Crohn’s and that I’m allergic to tetracycline before continuing on to where she was headed. That type of relationship with your doctor is crucial to not only living with Crohn’s, but living well. Besides the peace of mind you get from that type of relationship, it has practical implications. When Cimzia was first approved for use, my GI doctor called me with the news and asked if I was interested in trying it. Had I waited for my scheduled appointment, I would have waited another four months before beginning treatment.
That brings up my next point: make certain you keep all of your medical appointments. Things come up that we never expect in our lives, but it is critical that seeing your doctor regularly. Even if you’re feeling well, your doctor may spot something and be able to put out the fire before it begins. Make certain you take all of your medications as prescribed. There’s a good chance some of them will need to be taken multiple times a day (mine do). A tip: nowadays, almost everyone carries a cell phone. And many of us carry a smartphone. A great way to remind yourself to take your meds is to set reminders on your phone. In many cases, you can synch those reminders with your computer, too.
It’s also important to have a good support network, other than the medical professionals. Friends and family are going to be important as you live with Crohn’s. Some of the people you consider friends won’t want to be bothered with helping out when you’re having a flare – it’s actually a fringe benefit to Crohn’s. You’ll find out who your real friends are and who was just a hanger on. Part of the reason is mental. Nobody may have told you this (although you might have suspected), but living with Crohn’s can have some very down moments. You need to mentally prepare yourself for frequent hospital stays and often feeling like – pardon the pun – crap. There are times when you will be so physically ill you can’t leave the house; having a friend or family member willing to run errands during those times is invaluable. Depressed feelings go hand-in-hand with so often being unable to do much more than run to the bathroom, with the frequent hospitalizations and being isolated. Having friends who are willing to drop by, make hospital visits and just generally keep your spirits up is more valuable than having a million dollars in the bank.
I also suggest finding a Crohn’s patient network, or if you’re ambitious starting one yourself. There are a lot of us Chronies out there – probably more than you imagined. Nobody has an exact count, but it’s estimated that as many as 43,000 people in the United States have Crohn’s. There are also on-line support groups available, such as the Crohn’s Disease Support Network, MD Junction and Daily Strength. Why join a support group? Because while having friends and family is important, it’s also important to be able to discuss how Crohn’s is affecting your life with other people who have experienced exactly what you’re going through. If you’re reading this, chances are you want to find out more from someone who’s been there and done that. Support groups offer that and more.
IF you’ve read this far, you are almost certainly wondering what in the world you did to deserve this. After all, all I’ve written about is that you can expect pain, hospital stays, frequent bathroom trips and finding people to talk to. None of that stuff is fun and you’re probably saying to yourself, “My life is OVER!” Well, now for the good news: your life is hardly over. You’ll need to make some changes, sure, but consider them course corrections. Having Crohn’s doesn’t preclude you from living a full, happy and productive life. If I’m not proof enough of that, Wikipedia has a list of some pretty famous people who also have Crohn’s Disease – and it includes athletes, actors, musicians, politicians and others. The steps I’ve outlined above are just preparatory to living the life you want. Here’s some common, everyday hints and tips for not only surviving but thriving with Crohn’s:
Work
While it’s true that some Crohn’s patients are permanently disabled, the vast majority of us work for a living. And most of our employers are glad to have us, even if it means having to make a few accommodations to allow us to work. The key is to make certain you let your employer know that you have Crohn’s Disease ahead of time. I obviously haven’t held the same job for the past 20 years (who has, nowadays?) and one of my keys to finding productive employment is to always let prospective employers know I have Crohn’s. I may have lost a few jobs because prospective employers didn’t want to bother with it, but I’ve always looked at it as their loss. Your co-workers will understand the reason you take a few extra bathroom breaks during the day, pop pills at odd times and are occasionally late arriving.
Eating Out
Eating out can pose a special challenge for Crohn’s patients. Rule #1 about eating out: avoid fast food. While McDonald’s, Taco Bell, Wendy’s and Burger King are cheap, quick and tasty dining alternatives they play havoc with our insides. They’re just as fast coming out as going in. Like everything related to our diets, you can’t necessarily rule them out forever. But it should be on your “last alternative” list. Rule #2: be proactive about asking how food is prepared and what ingredients are in a dish. I made the terrible mistake of not asking several weeks ago and paid for it for two days. Remember, it’s your health and your right to know what you’re eating. I’ve yet to find a restaurant that isn’t willing to tell me.
Along with eating out is drinking. Again, this is the “anything in moderation” meme. If your friends are going out to get hammered, volunteer to be the designated driver. If you’re having a beer after work with a couple of buddies, listen to your gut. If your symptomatic, it’s probably best to have a glass of water (or ginger ale) instead. If you’re otherwise healthy, one or two drinks is probably ok. But more than that and you will be asking for trouble. And if you’re drinking anything alcoholic, eat something – it helps slow the absorption of alcohol and your stomach will thank you. Trust me on this one – a hangover with Crohn’s is twice as bad as any you ever had without it.
Traveling
There might be no greater horror for a Chronie than being on the road and needing to find a bathroom – NOW – and not being able to find oneThis has happened to everyone with Crohn’s; you’re not alone in this experience. But there are a few tips that can reduce the chances of it happening. First, map your route and the public restrooms along the way. There are some great on-line resources for this, generally localized to your region. If you happen to have an iPhone or Blackberry, download the SitOrSquat app. It’s a terrific resource for finding a public toilet. (For the rest of us, you can text 368266 and get back a list of nearby bathrooms). Tip #2: check with your doctor if it’s ok to take an anti-diarrheal before heading out. If so, then go ahead and pop that Immodium® or Kaopectate®. Third, do your best to use a toilet before leaving.
Even doing all of this won’t prevent accidents from happening. They will, so it’s best to be prepared. I always carry an emergency pair of underwear in my briefcase, along with some baby wipes and one of those plastic bags you get from the grocery store. Most of my friends understand why my briefcase goes with me everywhere (even to the beach, although I don’t take it on the beach). Ladies, you can do the same with your purse.
Dating
Most of what I covered above applies to dating, as well. Your date will just need to be understanding if you need to excuse yourself from the table during dinner, or take a leave of absence during a movie. But one thing to note about Crohn’s is that stress can bring on symptoms – and dating can be a stressful event. As with work, let your date know ahead of time that you have Crohn’s. If they beg off or stand you up, well, then they definitely weren’t right for you, were they? Romantic situations can be difficult (after all, excusing yourself and running to the bathroom can ruin the mood), but you and your significant other will figure those out as you go along.
Starting a Family
One of the most important decisions a person ever makes is if and when to start a family. For a Crohn’s patient, the decision becomes even more difficult. I can’t tell you whether or not to have children, or when the time is right. I can only relate my personal experience and that I wouldn’t trade my three sons for all the tea in China. But things you definitely want to consider include the possibility of passing along Crohn’s (about 1 in 3 Cronies have a family member who suffers). You also need to take into account how well your Crohn’s is responding to treatment and how the additional stress of children may affect you. Finally, while all prospective patients need to take into account their financial situation, Crohn’s patients need to be especially mindful of the fact that as a result of their condition, they may face periods with reduced (or no) income.
Stress
Moderating your stress level is key to living well, either with Crohn’s or without. It’s just that for those of with Crohn’s, we need to pay a bit more attention to it than most people. If you perused that list of famed Cronies, then you’ll notice quite a few of them had stressful occupations. (Imagine the stress Dwight Eisenhower was under, first as the man tasked with defeating Hitler and later as President of the United States!). None of them could reach the pinnacles of their professions without learning to manager stress and the good news is you can, too. Whether it’s working out in a gym, running, prayer, meditation or something else, find it and practice it. For me, it’s a combination of prayer and working out. I work out at least three times a week and every morning starts off with a bible reading and prayer.
Outdoor Activities
If you’re anything like me, you probably enjoy being outdoors and doing things. And there’s absolutely no reason you can’t, even though you have Crohn’s. I played baseball until age and bad knees caught up to me, I’m still an avid bicyclist, I play golf and I still love taking hikes through the woods and spending time on the beach. If you enjoy the great outdoors, just follow the tips for traveling above and you should be fine. If you’re also into organized sports, most leagues are willing to grant you a “time-out” so you can use the restroom.
Ok, I think I covered most situations here. But if you have any other questions, feel free to drop me an email at rayrothfeldt@aol.com.
Crohn’s Disease: Living with a Patient
As a long time Crohn’s patient, I am often sought out for advice on handling the disease by newly diagnosed patients and their families. And while awareness of Crohn’s is much greater than it was twenty years ago, most people really don’t understand much about the disease or the way it impacts a patient’s life. So I’ve decided to write a four-part document that hopefully explains to new Crohn’s patients and the general public what to expect and how to cope. These posts cover the medical symptoms tips for patients living with the disease and tips for people who know someone living with Crohn’s.
So, you’ve just found out a friend or family member has Crohn’s Disease. You probably have a thousand questions swirling around your mind and no idea where to begin asking them. What do I do? Where do I go? Can I get it?
First, don’t worry about catching Crohn’s from someone who has it. While the origins of the disease are unknown, the one thing that is certain is that it isn’t communicable. Second, read the posts regarding symptoms and treatment to get an idea of what your loved one is experiencing – and what they’re likely to go through in the future.
One of the least understood aspects of Crohn’s Disease is the frequency and degree of pain that Crohn’s can inflict on those afflicted with the condition. I’ve compared it labor pains – and my wife has told she doesn’t think I’m far off. When flaring, the constant pain has a dual effect on patients: first, intense pain impairs anyone’s ability to think clearly. Second, the pain meds some doctors prescribe are narcotics which will cloud judgment even further. This relates to the first two things you can do for your Crohn’s patient.
You shouldn’t let them make important decisions alone. You won’t intrude in their personal business by simply asking, “Are you sure?” if you think they’re making a foolhardy choice. Chances are once they’ve achieved remission, they’ll thank you for dissuading them from buying the $5,000 TV. If you’re a close relative (such as wife, husband, mother, father, etc.) speak with their doctors often. If possible, go with your loved one for medical appointments. In this way, you can be an important resource for them, gathering information about treatment plan, medications, future tests and the like when they are at their most vulnerable. You can also gain peace of mind by being fully knowledgeable and participatory in their treatments.
Often, what Crohn’s patients need more than anything else are the simplest things. During a flare, they may not be hospitalized and can often appear “normal” to the casual observer. But they’ll experience extreme fatigue and intense pain when symptomatic and doing everyday tasks can take their toll. And since Crohn’s patients are susceptible to stress (even more so during a flare), the pressure of not being able to attend to those little things can compound an already difficult situation. Offering to pick up a meal or do the dry cleaning might take you an extra 5 minutes, but can relieve your friend of what may seem to them an impossible task.
Perhaps the simplest and easiest – yet one of the most important – things you can do for your friend is keep them in good spirits. Depression is common among people with Crohn’s. Stop to think about it for a moment: how would you respond if you were constantly in and out of hospitals, suffering through intense pain, having to run for a bathroom every ten minutes and getting poked and prodded by teams of doctors? A phone call; dropping by to say hi or simply sending the occasional “Hang in there” text message can do wonders.
It is also important to understand that even when all seems well, your friend may not feel 100% comfortable getting out and about as they once did. For a person with Crohn’s, one of our greatest fears is needing a restroom NOW and not being able to find one. You might want to go to the beach or to the park; they may not say so, but they’ll lack the confidence in their bowels to make such a trip feasible. It’s still important for them to get out of the house and socialize, though – think of an alternative they might enjoy. Shopping malls, movie theaters and other venues with easily accessible public toilets are all good.
There are also various references available for people who know someone with Crohn’s Disease. A great resource for families and friends is the Crohn’s & Colitis Foundation. They do tremendous work in assisting both Crohn’s patients and their support network. Another terrific resource is the Cleveland Clinic, one of the leading research centers in Crohn’s. Both organizations are non-profits; if you’re so inclined, they appreciate donations.
The important thing to remember is that your friend hasn’t changed. Yes, they now have a terrible illness – but the person inside is the same person they were the day before they were diagnosed. They still enjoy doing the same things, but they will need a little more reassurance, a little more compassion and a little more understanding going forward.
Crohn’s Disease: Treating the Symptoms
As a long time Crohn’s patient, I am often sought out for advice on handling the disease by newly diagnosed patients and their families. And while awareness of Crohn’s is much greater than it was twenty years ago, most people really don’t understand much about the disease or the way it impacts a patient’s life. So I’ve decided to write a four-part document that hopefully explains to new Crohn’s patients and the general public what to expect and how to cope. These posts cover the medical symptoms tips for patients living with the disease and tips for people who know someone living with Crohn’s.
In this post, I’ll cover some of the treatment options available and the improvements made since I was first diagnosed. But before deciding on a treatment or treatments, discuss all of these options with your doctor. You may want to read to read the section on symptoms before reading this post, so that you understand why certain treatments are used.
When I was first diagnosed in April 1991, there weren’t any truly effective treatments for Crohn’s Disease. The treatments were either drastic – an ostomy – or did their best to mask the symptoms . Medications included a form of sulfa, antibiotics, oral steroids and anti-diarrhea solutions. Since these medications rarely induced remission of the disease (that is, a significant reduction of symptoms), most of us with Crohn’s were hospitalized often. Between 1991 and 2000, I was hospitalized 18 times for Crohn’s or Crohn’s related symptoms. All told, I spent 318 days in a hospital bed during those ten years.
The principle reason treatments were so ineffective was that so little was understood about the disease or how it functions. Fortunately, great strides have been made over the past ten years. Thanks to the work of researchers, current treatments are much more effective. I’ll go through each of these.
Corticosteroids
Corticosteroids are artificial hormones often given to patients in during “flare-ups” (periods of extreme disease activity). During a flare, what happens is the tissue surrounding the disease inflames, causing the extreme pains for which Crohn’s is noted (I’ve joked that I know what labor pains must feel like – my wife actually agrees!). Corticosteroids such as Prednisone, Prednisolone and Deltasone work by reducing the inflammation. These drugs are artificial replacements for the corticosteroids generated by the human body, but are given in much higher doses than the body normally makes. I’ve received as much as 120mg of prednisone a day, or about 60x the body’s normal production. While they are as close to a miracle drug as any for ending flare-ups, they pose serious risks with extended or frequent use. The first is dependence; when receiving such massive doses the body stops producing its own. This is why they are usually prescribed for short periods and ramped down while prescribed. Prolonged use can also lead to cardiovascular disease, osteoarthritis and cataracts. Also, patients taking corticosteroids should note that weight gain and mood changes are common when taking them.
Sulfonamides
This type of medicine is used to help maintain remission. It’s been used since I was first diagnosed, but the delivery of the active ingredients in sulfonamides has improved greatly in that time – meaning lower and less frequent doses are needed for the same effect. The first medication I was prescribed was Sulfasalazine; I had to ingest three 600mg tablets 4 times a day. If you’re not interested in doing the math, I was taking 7200mg every day, without much positive effect. Today, I take 1200mg of Lialda daily. The most commonly prescribed sulfonamide for Crohn’s today is Asacol (or its generic equivalents, Mesalamine and 5-ASA ), usually at a 800mg dose three times daily. The side effects are relatively minor, such as excessive gas and bloating. In rare cases, it can exacerbate pre-existing heart and lung cases. And some studies link these drugs to reduced fertility in men.
Antibiotics
Everyone has bacteria lining their digestive tract. We actually need them to help with proper digestion. But during Crohn’s flare-ups, the bacterial populations literally explode. Nobody is quite sure why, or what the connection may be. Regardless, most gastroenterologists will prescribe one or more antibiotics during a flare-up. The most common is flagyl, given intravenously.
Anti-TNF medications
The first major advance was in understanding the role an antigen called tumor necrosis factor
(or TNF) plays in Crohn’s and the use of anti-TNF drugs in fighting Crohn’s. TNF forms naturally within the body and is one of our immune system’s defense mechanisms against cancer. It works by inflaming the cells around the cancer cells, in essence choking them. Nobody is quite sure why Crohn’s patients suffer this type of inflammation, but studies in the mid and late 1990’s showed that anti-TNF drugs actually reduced the chronic tissue inflammation. Since then, drugs like Imuran or 6-Mercapturine (6-MP) have been introduced. They can’t actually induce remission, but they are effective in maintaining remission once it’s been achieved. The big downside is since they reduce the body’s principle anti-cancer agent, patients taking them are at much higher risk for developing cancers. Recent studies show the possibility that Crohn’s patients who have been on one of the anti-TNF medications for extended periods are at substantially higher risk for a type of leukemia.
Biologics (TNF-A inhibitors)
An offshoot of anti-TNF medications, biologics as used in Crohn’s treatment are designed to essentially “turn-off” the immune system. There are three currently in use: Remicade, Humira and Cimzia. Each has some unique side-effects; ask your doctor about them. In 1998, Remicade was the first of these drugs approved for use in Crohn’s, so it has the longest track record. However, it also has the most common allergic reactions and needs to be administered by IV over a course of several hours. Humira and Cimzia are similar to one another, but whereas a Cimzia injection can last 4 weeks, Humira needs to be injected every other week. Generally speaking, since the immune system is kept in a very depressed state while taking these, the patient is very susceptible to any airborne illness and contracting one can be deadly. If you are planning to take one of these, know the risks and make certain you discuss them with your doctor. I’ve been taking Cimzia for close to a year and it has made a HUGE difference in my quality of life.
Surgery
Crohn’s patients often require surgical procedures. These can range from the relatively benign (colonoscopy for examining the lower GI tract and removing polyps for closer examination) to a full-blown ostomy. Before undergoing any surgical procedure, make certain you discuss all of the implications with your GI doctor and meet the surgical team. You should also try to have a trusted friend or family member with you for these consultations – odds are if you’ve reached this point, the pain has also become nearly unbearable. Whether you’re fighting the pain au natural or with painkillers, you won’t be in the best command of your mental faculties.
Diet
For Crohn’s patients, diet is truly a four-letter word. We obviously need to eat, but many foods (including what can seem like most of the yummy ones) will cause an exacerbation of symptoms. Eat too many of them and you may wind up with a full-blown flare. Match that with the fact that as a Crohn’s patient, you need to ensure good nutrition even more so than most people and you stand a good chance of being baffled by your diet – or going insane J. Your best bet is to avoid foods that are hard to digest, such as nuts, popcorn and seeds. As for everything else, keep a log of everything you eat and if you experience increased symptoms, then avoid it in the future. Personally, I try not to exclude anything unless I’m in a flare – I just make certain my “avoidance” foods aren’t a constant part of my diet.
Also, you may want to consider nutritional supplements if you find you can’t get enough nutrients from eating. These can range from vitamin supplements to more robust liquid supplement shakes, like Ensure or Boost. In any case, working with a registered nutritionist is always a good idea. And one more thing: most Crohn’s patients find eating large meals tend to make them symptomatic. Try to eat smaller meals and eat more often. For instance, I typically eat 6 times a day – I cover this in more detail in the lifecyle adjustments post.
Alternative Medicines
There are quite a few alternative (or herbal) therapies out there for Crohn’s patients. I do not recommend any of them, although parts of them can be helpful. For instance, I find mint tea can help calm my stomach if I overdue it. Regardless, before trying any of them, be sure to check with your doctor and investigate them fully to find out how they can interact with your medications or each other. Just because they’re herbal or all-natural doesn’t mean they can’t have side-effects.
Ongoing Care
Perhaps the most important part of treatment is your ongoing care. Your doctor will likely send you for seemingly endless tests. CAT scans, GI studies, barium enemas, X-rays, colonoscopies, blood tests and more are part of the typical “Crohnie’s” regimen. Undergoing these and maintaining your relationship with your doctor are crucial in keeping Crohn’s at bay.
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