Monday, November 19, 2007
Living with chronic disease... pain into action
by Ben Leach
CNN Medical Intern

I was barely 16, in biology class - and had to run. Literally. Imagine getting your hand on the hall pass - desperate to go - only to find the boy's room locked, to keep out smokers. You have no idea what that means to a guy with Crohn's disease. Another time, I had to be taken out of class in a wheelchair.

I'm just one out of 25 million Americans living with a chronic disease. The CDC says seven out of every 10 people Americans die a year from them. I was just 16 years old when I was told I had Crohn's disease, an inflammatory bowel disease usually diagnosed in patients between the ages of 18 and 35. About half a million Americans suffer from the same thing - another half a million suffer from its GI cousin, colitis. Symptoms include abdominal and rectal pain and diarrhea. It's a disease you can manage, but not cure. For me, a high school sophomore, I lost weight and felt weak and experienced a laundry list of humiliating symptoms from abscesses in my posterior to constant trips to the bathroom. I went from perfect attendance in school to missing weeks of class at a time. I had no clear idea what was happening to my body, and I wondered - and feared - about my future.

But as confusing for a kid as the diagnosis was, the treatment course also was difficult. I was prescribed a corticosteroid to reduce inflammation, which on faith - and, doctor's orders - I took every day. Bad call. Not only did it not manage the progression of my disease or make me feel better, it caused bone loss - and I ended up with osteoporosis as a teenager. Later, I was given an infusion that worked wonders for a time, but eventually my body developed antibodies to it.

So there I was - sick - with treatments that didn't help me - they hurt me. But I learned something very valuable. I learned to speak up. I sought out a doctor who knew something about Crohn's disease. I found treatments that worked, and by late in my junior year in college, I had my disease under control.

I was determined not to let others make the same mistakes I made. I started training in a local pharmacy to become a pharmacy technician because I wanted to learn more about medicine. I learned about an array of drugs - not just the ones I was taking. I realized I wasn't alone, and had plenty of firsthand knowledge to share both as a patient and behind the counter.

I also found I had a passion for medical reporting, which brought me to CNN's medical unit. I have learned that it's ultimately all about asking questions. When my disease was diagnosed, I wasn't asking nearly enough questions. Now, working alongside journalists and researching stories, I've found answers: My personal agony as a patient has made me realize I want to be asking the questions that help others with chronic diseases find their own solutions as I continue my path to medical reporting.

Living with a chronic illness forces you to find your own definition of "normal." I spend a good deal of time looking at statistics - I knew I didn't want to be one of them - and on education and sharing information. It's my way of not being just a number, but living my life - and living well - with Crohn's disease.

Do you live with a chronic disease? What's worked for you? We'd love to hear from you.
My husband has a chronic illness. Through elimination of everything else, he was diagnosed as having chronic inflammatory de-mylienating peripheral neuropathy. After treatments that failed, they changed his diagnosis to idiopathic peripheral neuropathy & they only treat the symptoms - burning, tingling, numbness, shooting pains in his legs & hands -no feeling below his ankles, balance issues, feeling like he's lifting cement blocks when he walks, stumbling, can't run... he's 47 & eventually will be in a wheelchair. Neurotin has helped - the latest generation Lyrica has not helped - and the next step is narcotics. Although frustrating, we are thankful that this is life changing, not life threatening.
Imy, King George, VA.

I have diverticulosis. While there are good days the majority of my days are filled with frantic trips to the bathroom, sleepless nights, swollen abdomen and I always feel so very tired. Whether I eat or don't eat, exercise or not it is a very difficult disease to manage and plays absolute havoc with my personal, social and work life. But it is as Ann, Bedford, VA said... I am thankful that it is just life changing and not life threatening!!
I have Hashimoto's disease, a chronic autoimmune condition in which the immune system attacks the thyroid, causing it's normal production of hormones to decline. I went through two years of standard AACE (American Association of Clinical Endocrinologists) protocol treatment, during which my symptoms became worse, not better, even though the standard measures of adequate treatment, serum TSH and T4 levels, were in the normal range. I have been checked for everything else, with no other disease findings. The only thing that "improved" was that I lost 25 pounds, which I could not afford to lose anyway, since I was already skinny. All of the endocrinologists I have seen, including at Mayo, can't understand why I am not feeling better. I have been checked for every other disease anyone could possibly think of, all negative.

I have found through my own research something that I now do to help myself feel better, though it does not make the problem permanently go away. It was right there under the nose of every single doctor I have seen, but none of them recognized it. All they needed to say was, "If you would just do this, you will feel better, while we try to get your hormones back in balance." I have also found a treatment using an over-the-counter supplement at USFDA safe levels, that has been demonstrated through a double-blind placebo controlled study to turn off the autoimmune attack in many patients. I am currently self-administering this under the care of my primary doctor, with the hope that it will be effective. I found all of this information in the existing body of research in medical journals. Apparently, none of my endocrinologists read their own medical journals. However, they are all well versed in standard protocol.

The fact is that there is no one who knows a chronic disease more intimately than the person who has it, not even the medical specialists. Nor is there anyone who cares more about returning to some level of "normalcy." A chronically ill person knows when a standard treatment protocol is not working. He or she does not need a blood test or a specialist to figure that out. In the end, it is the patient's experience that matters.
I have lived with Crohn's disease for 25 years and it is a hard journey. The most important thing is to keep up with any new development because sometimes your doctor doesn't have the time. I am lucky to be at a research university hospital with a doctor who runs clinical studies. If your doctor isn't curious enough, you may want to find such a center.

CNN should look into low dose naltrexone, a new application of an old drug that is doing wonders for people with chronic diseases. Unfortunately, because there isn't much money in it because it uses a known drug, the drug companies aren't paying attention to it. So there is a small group on the web that is financing clinical studies at universities and trying to get the NIH to do more.

After 25 years of Crohn's, I started it and in four months am doing very, very well. Perhaps CNN could do a story on it and give it the boost that it needs...the theory of it is simple and it works on many different autoimmune diseases. UCSF hospital is currently doing a study of it on MS and the past initial studies have had very promising results...
I've had Crohn's disease since I was 23, and, in the 15 years since, I've learned that you have to ask questions and DEMAND answers. You have to learn all you can about your disease. Once you do, you'll realize that some doctors don't know as much as you think they do. You also have to be willing to seek out qualified and involved physicians. I drive 2 hours each way to my GI appointments because I realized the doctors in my town aren't that good.
I've been struggling with Type 1 diabetes for 18 years. During this time, I've developed insulin resistance, making it a "hit or miss," for a variety of reasons, when calculating out my 5 to 7 shots of insulin per day. Finances have prevented me from getting to the good clinics for treatment, such as Joslin in Boston, or for the state-of-the-art equipment, such as an insulin pump (I won't climb on my soapbox about the state of US medical care:). I gradually put on 160 pounds as my body struggled with the insulin resistance, with more blood tests, organ function tests and screenings than I can count.
But this year I started pursuing a different strategy. Rather than rely exclusively on conventional medicine, out of despiration I branched out into medical treatments that are still considered out of the mainstream. Instead of relying on inhalers for respiratory distress, I used accupuncture. One treatment was good for three months of comfortable breathing for me. Yoga and massage therapy kept my knees and joints from stiffening and "freezing up," keeping mobility (and preventing the doctor from putting me on medication for arthritis). But the biggest breakthrough happened when I worked with an endocrinologist who put me on a restricted vegan diet. It was at this point I discovered I had food allergies that were at the heart of my gastric distress, bowel discomfort, weight gain AND respiratory distress. I no longer take any meds for the "asthma" diagnosis, threw out my prescription for Protonix (since I haven't had any gastric or bowel discomfort in more than three months), and I've lost 28 pounds to date.
Too often the medical establishment is quick to prescribe medications to treat the symptoms without fully exploring the source of the disease. If I had to offer any suggestions to anyone living with a chronic illness, I would say pay attention to yourself-you will always know best, what is working and how you feel. Don't feel you cannot say anything to a doctor or specialist, just because they have the the so-called medical training. It is called "practicing medicine" because the knowledge is never complete. Do not be afraid to stand up to you doctor if what they say isn't working, and that includes walking out of the office if you are not satisfied. After all, if someone messed up your haircut, would you go back? Your health, and your life, is worth far more than that.
I was diagnosed with post-Lyme syndrome after I was treated for Lyme's disease. I had recurring joint pain, cranial paresthesia, paresthesia throughout my body (called idiopathic neuropathy), chest pain, and terrible headaches. It slowly became worse and worse. I took oral antibiotics for 2 years and was completely cured of post-Lyme syndrome. I believe post-lyme syndrome can be completely cured with long-term antibiotics. I am proof of that!
After a lucky, healthy & happy life for the first 40 years of my life, everything changed in a flash last year. I fell...yes, just a simple fall. And it almost killed me. I think the first few months I spent in shock dealing with all the changes from this one event.

My fall resulted in permanent brain injury. Therefore, I lost my senior executive career, my ability to communicate clearly with others and lastly, my ability to provide for myself & my son. It is not easy to lose a six-figure income. I lost certain freedoms taken for granted ~ like a driver's license thus most freedom an adult takes for granted... ( ?!? )

My advice is really simple:

1. Be gentle with yourself!
2. Act on your instinct, your "gut"
feelings regarding the entire
medical profession. I fired 5
doctors before I found a really
good one who diagnosed me
3. Don't apologize for your illness
and don't suffer fools gladly.
You may be amazed at the cruel
remarks made by those who
love you. ( & complete
4. Let those who spend time w/you
know how to help ~ if you become
ill in their presence. Only
share info on a needs-to-know
basis or what info makes you
5. Don't allow your self-esteem to
6. File for any benefits due to
you - take what you you deserve.
7. Keep your mind & body in as good
a shape as possible!
8. Take this time and find your
passion. I took my physical
ownership of a retail boutique
& am trying to be successful
as an online retailer.
9. Take care of yourself! If you
need a nap and can take one- DO!
If you need help from others...
ask for it. Remember, people
cannot read your mind.

And lastly, always prepare a back-up plan: Plan B & Plan C in addition to your original plan. You never know what may happen! Take care of yourself!
I have had Crohn's disease since I was 15. I am now 56 and have had a fistula, two abcesses and a small bowel resection. Nonetheless, I have led an almost normal life (I don't the energy of most people and I often abdominal pain and irregular bowel habits) and have worked for the U.S. State Department in a number of senior positions overseas. good luck to fellow sufferers. Sam Brock
I have lived with chronic pain for the past seven years from a broken neck and back. I have around 14 ruptured discs in my spine along with arm and hand surgeries I went ahead and had fusions on my neck and back and the last vertebrae in my spine removed also. I can not sit or stand for any length of time with out being in excruciating pain. After all the surgeries and steroid injections I must write to encourage others to not give up hope. Physical therapy at Baylor here in Frisco TX has greatly improved my ability to walk and do mild stretches. My best help has been from antidepressants (Effexor) and I take Vicodin for pain. Neurontin and Lyrica did nothing for me and are expensive. I watch my diet to not gain weight and eat fruit and veggies etc.
I pray at morning night and meditation and count my blessings everyday. I also do artwork when I can since I am unable to work. It took four and a half years to get SSDI. I feel pretty lucky to walk and not be in a wheel chair and still moving. Please do not give up hope, find another doctor, get a second opinion, (I went to dozens before i got the help I needed-so many are I'd don't know...unavailable) If today was bad, get some rest, tomorrow will be better. I know- i have been there-one more day you can do it, one more phone call, one more doctor- I lost my profession, livelihood, health, car, almost my place to live, and went without food for many days and so many times I wanted to die.
I kept asking- why? What is the lesson. Now in retrospect, I have one. I have learned alot about who I really am, without stuff and even people that said they cared and in the end didn't. I am not bitter I am better and I know you can be too. God Bless to all that read this. I love you. My recycled art website is world wide web liz london dot net. Only god can really heal us.
Although I don't have a chronic or life threatening disease, I did meet a young woman at snowboard camp in Switzerland with Crohn's disease. She was unable to participate due to her illness but she came because she wanted to be around her peers and forget even for just a little moment her disease. She's courageous in trying new medicines to overcome her disease.
I was diagnosed with Crohn's disease back in 2001 after a long battle. I dropped from 185 lbs to 110 and my frustration mounted as my doctors told me that they had no clue as to what was happening. I still have the fatigue and loose bowels but Remicade has helped me to stabilize my day to day life. I have had many many jobs in the past six years due to this. It affects every aspect of your life but with changes you figure out what works for you. For everyone out there with a continuing condition God bless and I hope you experience as many remissions as possible!
As diabetes has become a much more common today, today's story about the boy who called 911 to save his mother's life from diabetic coma piques my interest in a topic I'd like Dr. Gupta to discuss - hypoglycemic unawareness.

A friend of mine died a few years ago. Her type 2 diabetes progressed rapidly and the hypoglycemic unawareness resulted in my having to get her taken to the emergency room for recovery and treatment when the event happened in my absence.

While I was with her, I could properly respond to the symptoms of the start of the coma, including markedly slowed and confused speech. In those instances, I circumvented emergency room treatment.

Hypoglycemic unawareness happens when a diabetic person can no longer properly react to his low blood sugar condition.

The condition is one of importance not only for the diabetic, but also for the caregiver(s).

First of all, I do not know that the condition is recognized. Next, caregivers need to know that the diabetic is not just becoming lax with his own care - and needs someone to intervene.

Screaming and getting angry at the diabetic will not work - and, in fact, makes the relationship with the diabetic worse.

What is needed is a medical evaluation that can determine whether the diabetic should be placed in a nursing home and/or receive more frequent visits for in-home care.

My friend died while I was at work. I still wonder if she'd still be alive today if I - or someone else - was available to intervene.

I'd like to save the lives of other diabetics.

Would it be possible to discuss hypoglycemic unawareness on a future show?
It is so nice to see someone mentioning this awful disease in the news. I have suffered with Crohns disease for over 32 years. My life has had its ups and downs, but I continue daily to fight to keep on living my life as normal as possible. I am not always successful, but I do keep trying. This is a disease that is so hard to discuss and also one that is hard for others to understand, because most of us look normal on the outside, but if the world could see and feel how we do, I think more people would be sympathic to what we deal with on a daily basis. Thanks again for bringing Crohns disease to others attention.
Thank you so much for talking about Crohn's disease in the news. It's a disease that so many are embarrassed to discuss with friends and family, let alone put it out there for anyone and everyone to read about.

I was diagnosed with Crohn's at 16 as well, my junior year in high school. Actually, your story sounds a lot like mine. Luckily, my teachers were so understanding with my absences and illness. I survived that year, and for my senior year, instead of going back to my high school, I opted to take college classes, for it allowed me greater control of my schedule. That control was especially important so I didn't miss so much school, and I was on Remicade at that point, and my infusions would take up a lot of time, time that couldn't be missed if I had stayed at the high school. Unfortunately, I built antibodies and had a reaction called serum sickness to Remicade. The reaction occurred after my gastroenterologist doubled my dose because the regular dose had stopped being effective. I switched to Humira, and I have been doing much better since then.

I'm now a freshman at the University of Minnesota in Minneapolis, and my life is going well. I still have bad days, but I've learned that I just have to take advantage of the good days I have. I try to explain my condition to anyone who will listen, but at the end of the day, the only people who truly understand the ins and outs of Crohn's are others who have been diagnosed and live with the disease on a daily basis.

Thank you again for putting Crohn's disease in the news. Any little bit of attention helps raise people's awareness; hopefully, people will also be more understanding of what we have to deal with day to day.
chronic disease with pain is hard to face when your young- mine started about 5 years ago when i was 39. Having two children who i love and adore, not being my best for them is hard. It is also tough having to take a lot of medecine, knowing i will always have to take it. My diseases are thyroid immune dis-order, arthritis, neuropathy, and migraine. Acceptance came after denial, anger and depression. Management is the key, as there is not a final answer or cure. Also, I have faced the fact that my doctor also gives me medecine to manage my pain and improve my quality of life and it's ok. I am certainly grateful for the smart doctors who helped me and the medecines they have developed.

ann atlanta, ga
I have lived with back pain for years, but lived a very active life until seven years ago when the pain became so severe I could no longer work. To make a long story short I was found to have a cracked vertebra in my neck and disc damage down to my lower back you can guess at the surgeries that came next (poor pain management cost me most of my teeth), and just when I thought I was recovering a small heart attack lead to bypass surgery. But what have I learned from all this? One you have to be your own advocate, its easy to give way to the man or woman in the white coat ask questions and be assertive about your concerns and try to think of this as a team effort. And when you commit to a plan of action do your best too keep up your end of the plan. Two trust your self if a treatment or medication is not working bug that medical professional about it and if your words fall on deaf ears, consult with some one else. Don't forget its your life thats important, it may bruise their ego but it can also open new treatment options. And third do the best you can to take care of your inner self if you can find a way to get some peace and happiness into your life even if it lasts a short time each day it makes a big difference.
After being diagnosed with ulcerative colitis at age 17, I spent many years not able to think more than a day ahead b/c of the uncertainty of not feeling well.

With some luck, I found diet a key element of living with inflammatory bowel disease.

I'd highly recommend reading Elaine Gottschall's Breaking the Vicious Cycle (new, used, or borrowed!)
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