Friday, October 19, 2007

Lupus and Crohn's Disease

Lupus and Crohn's Don't Need to Ruin Your Life
By Candida Bohnne-Eittreim

It's been a long journey of discovery in how to live with both lupus and Crohn's Disease. Both of these are autoimmune disorders that wreak havoc with the body's connective tissues, and in some cases cause death. Because these are incurable and little understood disorders, it has taken major proactiveness on my part in learning how best to cope with the almost constant pain and fatigue they carry with them.

I was first diagnosed with Crohn's Disease in the early '70's. I had been losing weight steadily, and was wracked with severe abdominal pains. My doctor had told me most likely I was suffering from "housewives" syndrome, which he blithely claimed was common among high strung women such as myself. That changed dramatically, when one night bent double with pain, I found I was hemorrhaging badly from my rectum. Admitted to the hospital from the emergency room, I was told I had cancer of the colon, and scheduled for surgery. When I awoke, I was told I had Crohn's Disease, and that it would require lifelong treatment. They had to remove a large piece of colon that was completely blocked by the thickening so common in Crohn's.

The next few years were a nightmare of tests, surgeries and medications more toxic in some cases, than the disease itself. I had started researching everything I could find about this disease, and was horrified to learn that there wasn't much that could be done. There was this enormous well of rage and a good dose of self pity in me during those early years. Rage that the supposedly best medical system in the world couldn't do better, or even answer how or why a person got an autoimmune disorder.

Crohn's Disease involves the digestive tract, from the esophagus to the small bowel. It causes pain, fever, and diarrhea. It can also affect the joints and the eyes, leading to blindness. When it attacks the colon and bowel, it thickens the walls with inflamed tissue, which if left unchecked, can lead to intestinal blockages, which are life threatening. The mechanism for it is the same for all of the autoimmune disorders-the body turns on itself.

In a normal system, if a person experiences a wound or an illness, the T cells and white cells react as antigens which attack the diseased or damaged area, then shut themselves off. In autoimmune disorders, there is a failure to turn off this immune response, resulting in damage that continues, unless through medications it is modified. Most of the drugs used are geared toward damping the response down to healthier levels. Imuran, cyclosporin, Plaquenil, azothioprine and prednisone are often used. All of them have unpleasant side effects, much like those experienced in chemotherapy.

After multiple surgeries, and a rash of severe reactions, I made a decision not to use toxins to treat this disease. Most importantly, I refused to let myself be defined by it. I am much more than the sum of this disease, and refused to give in to it.

About the time I had finally adjusted to living with Crohn's, I began feeling very ill in an odd way. My throat hurt so bad I couldn't eat nor could I swallow anything but ice water. I developed a pain in my right ribs so severe I couldn't walk for a week. The fatigue hit me so badly, I called it "crash and burn". Once it started, I had to lie down, where I'd fall into such a deep sleep, I heard nothing. After 3 weeks of this, I went to my internist, who ran tests, including an ANA (anti-nuclear antigen). When he called me in the following week, he was in tears, and told me I had SLE (systemic lupus erythematosis). I sat there numb, hardly believing I had not one, but two of these strange disorders.

Still struggling, along with my husband to come to terms with this latest happy bit of news, I immediately began researching everything known about SLE. I discovered it's not uncommon for patients with certain autoimmune disorders to have more than one. And in that case it is considered a mixed blessing. The thinking being having mixed connective tissue disorder is often less lethal than having just one. HA! The only blessing I saw was for the pharmaceutical companies that love to do clinical trials on us.

After long talks with my family and others who cope with these disorders, I made a momentous decision. No more cytotoxins or other drugs, save for those that eased the symptoms of daily living. No more fighting with the disease, but a day to day journey of learning to live with it, without impacting everyone around me. This was no easy decision, for SLE attacks the heart, the kidneys, the skin and sometimes the brain. But for me and my family it has turned out to be the right decision.

I started using alternative medicine, including herbal supplements that cause much less side effects, and in most cases have brought me greater relief. I use Co Q- 10 for cardiac support, along with carnitine. Hawthorn for the intermittent claudication of fingers and toes, and an excellent multivitamin daily.

Along with a diet rich in anti-oxidents and exercising to keep joints supple, I bring an attitude of refusing to behave as if I am severely ill with anything.

When I have bad days, instead of fighting it, I relax and try and find things to make life easier. Writing is one of them. Some of my best work has come out of my worst days of pain. Good days are a celebration. They are a little gift of freedom from my old friend-pain. I've learned to live for today, knowing tomorrow isn't promised. To bring the gift of laughter and love to those around me every day-good or bad. Each day I awaken thanking God for the blessing of another day, and every night I thank Him for the gift of these diseases. For through them, my children and others have come to realize that we are only limited by ourselves. Most of all that we have choices when it comes to dealing with the difficult things in life. We can give in to them and die, or we can soldier on and live a life filled with small miracles.


Ben said...

Hi Ames. I hope you don't mind, but I took a snippet of your entry and posted it on my site. I thought your description of Crohn's was the best I have read in a while and wanted to share it. I am also amazed at your attitude and commend you for it. I strive to get to where you are... just have not gotten there yet. Thanks for the inspiring words.

Marko said...

Its 3.14 AM by my country time. Why am i not sleeping? been trying to find a place to put a few of my thoughts in front of people that understand. Sorry for my english. Iam 22 years old ex student from a small mediteranian country Croatia, city of Vukovar still wrecked from a war 15 years ago. Damn eyes, killing me. Anyway In my country theres almost no public health and private is very expensive. In 2005 started with pain in my knees, severe unexplained rash from time to time, than carpal tunnel both hands, same thing on my legs, than broken tendon of myleft hip, broken cup of my right shoulder, nerve damage in my lower back,swalowed knees etc... When back in 2006 i managed to see imunology specialist (it took a year and a half of waiting to see it and had no money for bribe for doctors) he told me that my pain treshold is low and that i should exercise more and swim in a pool. only one year ago I was trainig semiprof. swimming and bcyclism allways living healthy and that day i had to pay a taxi cause i couldnt walk to take me to the doctor. In translation doctor know not what is wrong with me. 6 months ago i was half disabled. Couldnt walk, bath, write (give up computer science college (3hird year). Than i got chrons diseasse symptoms, lost 23 kg (30% of my normal weight). I am still in line for gastroenterology specialist. Diagnosis? Maby in 10 years in my country. A month ago my eyes got inflamed couldnt sleep i wear glasses and my eyes still hurt. My public (free) eye specialist knows nothing of autoimune eyes disease he told me that and that i should find (pay) someone else. Have no digasnosis, treatment. Wish i live in USA or somwhere more developed country. here no help. I am slowly loosing a grip. Need advice please? What would you guys do in my place? p.s hope someone read this cause i wrecked my handsto type this with one semiworking finger of a left hand. Damn my comment sounds pathetic. Better to go to sleep. I wish you all luck, much health! health is most important. Could win Mnt. Everest if I had mine back. :) My mail is so feel free to contact me with any thoughts, sugestions please. My country small so not much people with my problem to share expirience. Bye all.

een1212 said... Mom passed away from Scaleraderma 7 years ago. She also suffered from Lupus along with her 2 sisters-who also passed from the disease, all in their 40s. My mom ALSO had fibromyalsia and arthritis. I was just diagnosed with Chron's last week and my journey of testing begins. I have been waiting for this....and am scared to death. But reading your blog made me feel better and gave me a better understanding of these horrible diseases. Thank you.

corina said...

you sound like me ive had crohns some twelve years. my aunty has lupus my uncle had crohns .i have had some much pain in the joints for the last five years ive been only able to drive 18miles and my legs are numb and painful now its most of the time i dont like to take extra drugs as they make things worst some times .ive had throat pain for years and after years of great sight my eyes are rubbish driving glasses and reading . im now having test blood my gp said he is concerned about my blood how it gets around place to place not sure what he means,any ideas .i have pain in the knees feet wrist shoulders when carrying things. limited turning what do you think \/ take care ck x

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