Saturday, November 5, 2011

Music Therapy

I was thinking about ways that I've dealt with the pain and day to day inconveniences of this disease and it occurred to me that one of the constants in my life that has always helped has been my love of music.

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

One facet of having a chronic disease of any kind, is the amount of stress that occurs simply from dealing with day to day issues from pain, medical tests, medical costs, and the constant worry over the diseases progression.

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!

As I've mentioned in previous posts, chronic diarrhea is one of the worst issues of Crohns Disease and is particularly bad when coupled with small bowel resections and gall bladder removal. It is so debilitating that many people qualify for disability due to this chronic problem.

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

One of the great joys of Crohns Disease is the multitude of problems that it can cause to your health in general.

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

One of the worst symptoms of Crohns Disease is the oftentimes urgent need of using a restroom. This can be a painful and embarrassing situation, particularly in public places!

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

One of the biggest issues that affect Crohn's patients lives, particularly those who have small bowel resections and/or gall bladder removal, is the urgent need to find a bathroom when the dreaded diareah hits. For me when the pain starts, I have about 15 minutes to find a bathroom, and the pain and stress can be horrible. One way to keep from feeling like you have to remain homebound is to always plan ahead and be prepared. Knowing where the public restrooms are located can remove quite a bit of stress, and carrying extra clothing in the car or a travel bag can also ease your mind. I try to be honest and open with whomever I am with and explain the problem that I have in advance. Many states here in the USA now have laws requiring that IBD patients have restroom access and cannot be told "sorry, no public restrooms". I actually have a card that states this and have had to show it to shop owners on occasion. Of course, I've also resorted to "do you mind if I just shit on your carpet", and that usually works just as well. The best advice I can give is, keep a sense of humor, don't let this problem keep you from leading a normal life, and always prepare in advance.

Saturday, August 13, 2011

Crohns Disease and Kidney Stones

Just came from having an ultrasound of my kidneys due to a long, long history of kidney stones. It appears I have eight of the little buggers right now just waiting to journey from the kidney to the bladder. I've had problems with kidney stones ever since my 2nd intestinal resection back around 1984. I've probably passed over 100 stones and have had kidney surgery as well as about a dozen lithotripsy's. But you know what, I don't let it get me down and count each moment of non-pain as a wonderful moment. I've realized that change in my life is constant, and that each moment is special.

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!