The Power of Crohn’s Disease
As a 49 year-old battling Crohn’s Disease for almost 30 years, people always ask me two (2) things: 1. What is so unique about Crohn’s Disease which makes surgery such a last resort? 2. Why has it been necessary for you to be hospitalized over 200 times for treatment of Crohn’s Disease? The answers to these two (2) questions set up a foundation of knowledge that every Crohn’s patient should acquire so they are properly equipped to most effectively interact with their surgeon during that 1st surgical consultation. But before I share advice about what to ask your surgeon before your 1st Crohn’s Disease surgery, I think it is also important to understand the disease, its possible progression, its medications and its potential effects on your life. That’s why I’ve chosen to write this “advice article” from a story-teller perspective. After all, surgery is surgery but there’s nothing quite like Crohn’s Disease.
Experienced Crohn’s patients are not Doctors but for what we must go through with the disease, we might as well at least have some type of Honorary Medical Degree! To that end, Crohn’s Disease forces each of its patients to learn a great deal about his or her respective “type” and intensity of disease since Crohn’s can affect one person mildly yet another so severely that he or she can be disabled. There is no medical explanation for this wide and diverse range of brutality. Moreover, these mild vs. severe flare-ups and overall Crohn’s classifications can inexplicably go away over time or they can exacerbate. The auto-immune element of Crohn’s can also introduce other chronic diseases and conditions into the patient’s situation and these Crohn’s “related” medical problems can be more debilitating than the vice-like grip Crohn’s itself often has on the life of its patients.
When you also consider the life-threatening and life-style altering side effects of some Crohn’s Disease medications, the potential severity of the disease really comes into focus. Like many other Crohn’s patients, I have come to experience it as a disease which has a mind of its own whose main attributes are unpredictability and in-curability. How can a person plan a life around such an often pervasive disease which causes debilitating and painful flare-ups the timing of which are unpredictable? Oh, and the underlying disease is incurable? There are many more dangerous and debilitating diseases than Crohn’s Disease but few feast on a patient’s physical, mental, psychological, emotional, financial, professional, social and familial well-being as much as Crohn’s Disease.
A Correct Diagnosis of Crohn’s Disease
Assuming you are accurately diagnosed and manage to dodge the months or years of being misdiagnosed with people close to you thinking you are crazy for trying to associate together seemingly unrelated symptoms as if they are all a part of one horrific and existing disease (which they are, and the disease is called Crohn’s Disease), you’ve ultimately found “the” gastroenterologist who fits your needs, personality and lifestyle. During the first few years, under normal circumstances you would have likely been under medical treatment for a variety of Crohn’s symptoms that occur when your body’s immune system is ill-equipped to fight off inflammation. In fact, when posed with the task of fighting inflammation, your Crohn’s Disease somehow confuses your immune system and causes it to attack itself instead of the inflammatory intruder. This sounds like fodder for an old Jerry Lewis Comedy but the practical medical effects of this bizarre immune system malfunction make Crohn’s Disease potent and pervasive.
Despite the possible serious manifestations of Crohn’s, your gastroenterologist will start you off with the most conservative medical treatment and then gradually move you up that scale as your condition warrants. But as you know, your condition may forever stay at that very treatable level or it can get rather aggressive like mine and that’s when your doctor has to move to more “systemic” medications or eventually have you consult with a surgeon about surgical intervention.
Crohn’s Disease Recurs which tends to negate Surgery
In answering Question 1 above, it’s important to understand that Crohn’s Disease tends to “recur” in that, by way of example, having surgery to remove 4 inches of diseased small bowl intestine might solve your pressing medical problem but the mere act of surgical intervention could start the need for continued removals or surgical repair of additional small parts of small bowel intestine. The problem with that is there is only approximately 23 feet of small bowel in the human body and your small bowel is a very important piece of human equipment. Personally, I had a small bowel resection surgery which fixed an extremely painful then-pressing Crohn’s flare-up only to have Crohn’s come back or “recur” and affect the same area of my bowel a mere two (2) months later. After almost another two (2) months of aggressive medical treatment to try and avoid another bowel surgery, this Recurrence of Crohn’s Disease in my small intestine required another surgery to remove more of my small bowel only one hundred twenty (120) days from the date of the prior small bowel surgery. Additionally, and as referred to above, the 23 feet of small bowel serves several different important bodily functions such as digestion and absorption of nutrients so each time a portion of the small bowel is surgically removed or altered, the patient will have to make significant lifestyle adjustments to remain healthy and appear normal. There is also the reality that every surgery creates scar tissue or adhesions and these natural byproducts of surgery can, by themselves, cause Full or Partial Bowel Obstructions necessitating even more surgery. This additional surgery creates more scar tissue to the point where a viscous cycle forms such that the following credo was created: “more surgery begets more surgery.” In summary, these recurrence issues are the reasons surgeons don’t like to perform surgery to fix or repair Crohn’s Disease damaged intestine.
Crohn’s Disease Medications
Prior to having to consult with a surgeon, the traditional Crohn’s Disease treatments and medications with which you might be familiar generally fall within the different levels or degrees of the disease and are as follows:
Anti-inflammation medications: (Asacol, Dipentum, and Pentasa);
Cortisone or Steroids: (Prednisone, Budesonide);
Immune system suppressors: (6-mercaptopurine [“6MP”], azathioprine, Methotrexate, and Imuran);
Biologics: (These are injectable “Anti-TNF” Agent medications such as Remicade, Humira and Cimzia which have been proven to be very effective pursuant to current Crohn’s research. More specifically, the most current research indicates that the injection of these drugs binds them to “TNF” substances and that will block the body’s abnormal inflammation response. Some studies also suggest that the usage of biologics may enhance the effectiveness of immuno-suppressive medications. While I can attest to the almost dramatic positive effects of some biologics, I can also attest to the fact that the use of biologics in Crohn’s Disease can have VERY serious long term side effects many of which are only now first coming to the attention of medical practitioners. It’s one thing to be aware of these terrible consequences due to the small print [or fast spoken] legal disclaimers on the packaging inserts [or in TV/Radio commercials] of the biologics but it’s an entirely different reality when these patients taking biologics start showing up in emergency rooms around the world with life-threatening Lung Disorders and Fungal Infections. Almost forget, these biologic drugs tend to also be very expensive.)
Antibiotics: Antibiotics are used for a variety of purposes in Crohn’s Disease because in some patients doctors believe there is a bacterial component somehow involved. They are also used to treat bacterial overgrowth in the small intestine caused by stricture, fistulas, or surgery. Accordingly, your doctor may prescribe one or more of the following antibiotics: ampicillin, sulfonamide, cephalosporin, tetracycline, metronidazole [i.e., Flagyl]. (Personal Note: For whatever reason, Flagyl has proven to be VERY effective for me during certain types of Crohn’s flare-ups. In such instances, I typically take the antibiotic for 5-10 days and then get off of it. I mention this because even the use of antibiotics in Crohn’s patients can have serious complications such as the prolonged use of Flagyl causing Pancreatitis. Again, I am NOT a Doctor but I have been in contact with many Crohn’s patients who have contracted Pancreatitis after significant use of Flagyl. Amazingly, I have thus far avoided that nightmare.)
Anti-Diarrheal Medications & Pain Medications: These are drugs used routinely by Crohn’s patients for lifestyle purposes because no one wants to spend their days in pain or stuck in a bathroom. Some patients even see specialty “Pain Management Physicians” to specifically treat their Crohn’s pain. Whatever the reason, you should always tell your gastroenterologist what medications you are taking because this information will help him or her in devising your overall medical treatment and it will also be an important piece of information your surgeon will want to know about.
Why so many Crohn’s Hospitalizations?
In answering Question 2 above, I tell people my doctors are always doing whatever is necessary to keep me off the operating table for the “disease recurrence” reasons described above. The practical result in the 1980s and 1990s were increased hospitalizations although due to subsequent changes in healthcare and in the health insurance industry, I’m not so sure I would have been hospitalized as often or for as many days each time I was hospitalized if I got as many of the same type of Crohn’s flare-ups now in 2012. In any event, since there are a variety of effective Crohn’s Disease medications, many of which I outlined above, I was thus often hospitalized to take these medications intravenously or in combinations/strengths which are not available outside the hospital. In that regard, my gastroenterologist preferred seeing me in the hospital, sometimes for 20 days, if necessary, in an attempt to get me through a flare-up with the administration of medications rather than through surgical intervention and the likelihood of losing more of my intestines. I’m not so sure health insurance companies would now agree with this safe and conservative approach since they like to “turn over” hospital beds like waiters turning over tables in a trendy restaurant to maximize their tip income. In any event, doctors still follow the same conservative medication principles but more of the patient “response time” is done at the patient’s home due to the increased cost of being hospitalized. This harsh reality of a Crohn’s Disease flare-up adds to the feelings of loneliness and isolation which many Crohn’s patients unfortunately experience.
Finding the RIGHT Crohn’s Surgeon FOR YOU
I have gone through this short summary of Crohn’s Disease treatments and medications because I think a 1st time surgical Crohn’s patient should be familiar with the possible roads not taken and with all that is involved in leading up to Crohn’s surgery. The 1st time surgical patient should also know that when they consult with a surgeon and their gastroenterologist thinks they need surgery, they are likely going to receive a recommendation of surgery since that is what surgeons do! Of course, there are numerous exceptions to this but my point is that you want to make sure you’ve exhausted all possible medical treatments such that the only appropriate answer to your Crohn’s problem IS surgery. If you’ve arrived at that point, then your only responsibility is to pick the surgeon who is right FOR YOU. This means consideration of skill level, personality, understanding of your lifestyle and of the quality of life you are seeking by having the surgery. You also need to go through a battery of diagnostic tests prior to the surgical consultation and your gastroenterologist will naturally order these tests in trying to help diagnose you. It has been my experience that surgeons like to look at the actual Films from a CT Enterography and a GI Series. Depending upon your medical/financial and health insurance situations, you may have to undergo additional testing. Regardless, try to always obtain the original Films from each test so that the surgeon you ultimately choose can use them to successfully operate on you.
The Crohn’s Disease Surgeon – What to Expect
It’s difficult to recommend questions to ask a surgeon in a Crohn’s Disease case because with few exceptions every surgeon I’ve ever encountered has been SO confident and thorough that they leave little room for elaboration. Sometimes, however, this “confidence” can be construed as arrogance but I’ve also come to learn that with supreme surgical skills in Crohn’s cases comes a certain “self-assuredness” which can be off-putting if not expected. For example, these surgeons bring up money and the cost of the surgery earlier in the doctor-patient consultation than in any other medical situation I’ve ever encountered. Again, there’s nothing wrong with making sure you will be paid promptly for providing your services but such “directness” during a medical consultation may be a turnoff to you. If that is the case, please at least take away from the encounter that Crohn’s surgery is SERIOUS BUSINESS. The surgeon is being asked to basically take apart your insides and then put them back together sans the Crohn’s problems. If, even with that understanding, you don’t feel comfortable with that particular surgeon, look elsewhere but don’t forget you will encounter some aspect of this self-assuredness in almost every surgical consultation.
The Crohn’s Disease Surgeon – What to Ask
Prior to actually meeting the surgeon for the 1st time, you should write out your questions so that you are organized and respectful of his or her time. You should also have a written list of all the medications you are taking. Every surgeon will appreciate you doing this. However, LISTEN to them first and even take notes before you ask your pointed questions as they are accustomed to the nervousness and anxiety of 1st time patients and thus they are usually overly comprehensive in their initial explanation of the surgery. Besides the obvious questions related to the surgery such as the possibility of doing your procedure via laparoscopic surgery (i.e., instead of cutting your entire torso open), the estimated recovery time and the amount of pain involved, you should inquire about post-operative care and about the subsequent limitations in your work and physical activities and when you can start instituting your dietary preferences. Ask about the most likely problems which will be encountered with your particular surgery and what the ramifications would be to you if such problems occurred. Getting back to the pain issue, I would ask about the availability of a Pain Management Team at the Hospital if you are overly sensitive to post-operative pain because Crohn’s surgery can be among the most painful surgeries performed. (For example, a day or two after my 1st Crohn’s surgery, a kind nurse gave me a pillow on which she had written what I thought were “girly” drawings and she told me it was my “Cough Pillow.” I thanked her for her thoughtfulness but put the Cough Pillow as far away from me as possible in case one of my macho buddies stopped by to see me and found me cuddled up asleep with this girly pillow. Well, after the first inclination to cough hit me and I tried to cough but nearly passed out from the pain, that Cough Pillow and its girly drawings NEVER left my side and I didn’t care who saw me use it!)
Always keep in mind that this very confident surgeon may have to attend to you when you’ve had an unsuccessful surgery and he or she will need to “problem-solve” to get you better. Confidence is great but empathy and adaptability are also important. Be realistic with what you expect from the surgery and make sure you are both “on the same page” with your expectations and the surgeon’s capabilities/intentions. Understand the various costs involved with the surgery such as the Surgeon, Anesthesia, Hospital, Laboratory, etc. The Surgeon will not be able to break down the other costs but the office staff will probably know from whom you will be receiving medical bills. Lastly, if this is the surgeon you choose but the price is too high, ask if there is a payment plan available. It may feel strange negotiating over life or life-style saving surgery but you must and that’s why I think it is also always best to bring along someone (e.g., your mother, brother, sister, best friend, etc.,) who will respectfully act as your Patient Advocate of sorts because you will certainly need one when you are incapacitated from the surgery. More to the point, it is always easier having a “buffer” to ask about or respectfully demand those difficult items or issues which you don’t want to get into a heated conversation about with the surgeon who will be presiding over you at your most vulnerable condition. Besides offering you moral support, that Patient Advocate can more easily objectify the “transaction” just as the “self-assured” surgeon can since he or she has presumably done this hundreds or thousands of times before.
Now, you are ready for surgery. Good luck.