My Crohn's Experience:
My Crohn's Experience: My educational 40 year history of personal experiences with Crohns Disease, including symptoms, biologic medications such as Humira, and how Crohns has impacted my life in positive ways.
Saturday, November 5, 2011
Music Therapy
I remember being 15 and coming home from school with horrible pain and cramping, and doing nothing but putting on an LP, turning off the lights, and drifting away. What I understand now is that I was practicing self-taught meditation through music, and that the relaxation brought relief from the pain and stress of the day.
The Beatles, Beach Boys, and a myriad of other artists of the time did as much for me as many of the meds that I was on, and if I could I'd thank them all for the joy and release that they gave me.
As I write this I have music playing, coffee in hand, and can feel the tunes taking me away all these years on. Never underestimate the healing power of music.
Wednesday, October 19, 2011
Crohn's Disease: Stress Relief
I've found quite a bit of relief from meditation, mindfulness training, and simply walking. Exercise and trips to the gym also seem to help quite a bit and by lowering stress, my overall health seems to improve.
One thing I greatly enjoy is taking long walks and listening to music. I usually focus on the music and my breath, and make it sort of a walking meditation exercise. For me this works wonders!
Monday, October 10, 2011
Cholestyramine Is Saving My Life!
I've struggled for years, and while never letting the chronic diarrhea stop me from doing everything that I love, it's a real problem.
Enter Cholestyramine! I started taking this powder once a day and have had NO diarrhea in three weeks now! None! It seems like a miracle drug, and has vastly improved my life!
What is cholestyramine?
Cholestyramine acts like a microscopic vacuum cleaner sucking up certain body substances and even medicines. The drug binds up bile salts in the GI tract preventing them from being active in the lower bowel. It also absorbs cholesterol, thereby reducing the cholesterol in the blood.
Evidently, by binding up bile salts, it completely blocks chronic diarrhea. It tastes kind of gritty but I've been mixing it with orange juice and it's not too bad. But the cool thing is no matter how bad it might taste, it's a miracle not running to the bathroom twenty times a day!
Ask your doctor about this amazing prescription pharmaceutical if you suffer from the Aztec two-step.
Friday, September 23, 2011
Lithotripsy This Week
I've had three small bowel resections and the lack of intestine has led to my being hypercalcemic with high blood calcium (hypercalcemia), which in turn causes a large incidence of calcium oxalate kidney stones.
This week a stone in my left kidney had grown way to large to pass on it's own, so I checked into the hospital for lithotripsy, which is performed under general anesthesia in a surgical setting. Essentially, what lithotripsy does is focus sound waves on the kidney stone, and after approximately an hour, the stone disintegrates into small easily passed pieces. Well, usually easily passed pieces.
I currently have a large chunk of stone that is causing a lot of pain on my left side, but hopefully it will pass soon!
Crohns Disease, kidney stones, hypercalcemia....all part of the big picture, and all part of living with this disease. But, it's been a good week, life is a blessing, and there is never a dull moment!
Thursday, September 8, 2011
Crohns Disease And Restroom Access
Many states now have mandatory restroom usage policies for patients with IBD and restroom access is guaranteed to patients just as access is guaranteed to anyone else with disabilities.
Unfortunately, the state I live in, California, does not have this law in place and I have sometimes found myself literally pleading to use a public restroom. I sincerely hope that eventually restroom access will be available in all of the USA, but for now I carry a small card that explains my situation, looks like a legal document, and saves me the embarrassment of having to explain Crohns to total strangers. I'll post a photo of this card later today. I ordered it online and it was free of charge.
Wednesday, August 24, 2011
Living With Crohns: The Aztec Two-Step
Saturday, August 13, 2011
Crohns Disease and Kidney Stones
My Crohn's Experience: Introduction
My Crohn's experience started when I was diagnosed with Crohn's Disease at the age of 15, during a time when very little was known about this debilitating illness, and drug treatment options were few. In this blog I would like to recount my nearly 40 years of experiences with this illness; the good, the bad, and the ugly, and discuss current medications available to treat Crohn's Disease, such as Humira, Remicade, 6-MP, Prednisone, and others.
Crohn's Disease is classified as an inflammatory illness which is caused by the body's immune system attacking healthy cells in the intestinal tract, which can lead to intestinal blockage, rupture, sepsis and death if left untreated.
I have had three intestinal resections due to Crohn's Disease and the last nearly cost me my life. I say this not to be dramatic, but to raise awareness that ignoring symptoms can lead to serious consequences. In 1999, I had what I knew was a serious flareup, but instead of checking into the hospital for treatment, I tried to ignore my symptoms. I ended up in the ER with a 105 degree fever, semi-conscious from septic shock, with a heartbeat in lethal arrhythmia and requiring CPR. My intestine had broken open and the septic shock had set in. I spent four days in the ICU after having major surgery to repair my intestine, followed by IV medicines to fight infection. The doctors did not expect me to survive the night, but somehow I did, and I share all of this in order to tell you that if you suspect something is wrong, and you have a high fever and severe abdominal pain, RUN, do not walk, to your local ER. Call 911 if necessary, but definitely do not take chances. Get to a hospital pronto!