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.

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!

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.

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!

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.

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.

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.

Good Days, Bad Days

I've been doing so well on Humira that I nearly forgot how painful a Crohn's Disease flareup can be. Out of the blue Saturday night, with no warning at all, the nearly forgotten pain of a partial intestinal obstruction hit me like a ton of bricks! I took some Vicodin ES, Valium, and basically medicated myself to sleep. Please do not try this without talking to your doctor first, as it's a potent combination.

For me the pain med cocktail worked, and I slept for the next 14 hours. The next morning was my regularly scheduled Humira injection which I took with no issues.

Today, back to normal; no pain at all. The moral of all of this is it's a big circle: good days, bad, and back to good! Just have to accept the inevitable, have faith, and enjoy the ride!

6-MP Mercaptopurine Side Effects

Another med I've had experience with prior to starting on Humira:

6-MP

Mercaptopurine

(mer-kap-toe-PYOOR-een)

Trade names: Purinethol^®
Other names: 6-Mercaptopurine, 6-MP

Drug type: Mercaptopurine is an anti-cancer ("antineoplastic" or "cytotoxic") chemotherapy drug.  This medication is classified as an "antimetabolite." 

I had a lot of trouble with 6-MP as it made me so dizzy, and so nauseas that I couldn't handle it at all. I gave it a good shot for two weeks but the nausea would not go away so I subsequently stopped.

My Meds Cost $1000 Per Day!

Yep, you heard that right! Each Humira injection costs about $1000 per day. The good news however is that most insurance will cover biologic medicine and for me that means that I pay only $56 per month for my Humira!

Abbott Labs, the manufacturer of Humira also has an assistance program for those without insurance and it can cover the price in full. Check with Abbott at http://www.humira.com/global/financial-assistance.aspx for more information on this excellant program.

Humira Side Effect

I've been on Humira for nearly two years with no problems at all, but recently I've noticed joint pain in my fingers. I'm really not sure if this is related so I'm curious if anyone else has has similar issues. Maybe I'm just getting older, but it came on pretty suddenly and has not abated.

Crohn's Experience: The Good!

Although it sounds strange, even though this disease has permeated my life with medical problems, pain, and the embarrassment of having to constantly run to the toilet (one of the wonderful symptoms of Crohns Disease), it has also shaped me and molded me into what I consider an incredibly strong individual. I can honestly say that I know I can get through any amount of suffering with the knowledge that the bad is ALWAYS followed by GOOD, and that I have never let this disease become my identity. It is simply something that I deal with, and I rejoice in the times that I am symptom free. I have never let it control my life and I have lived my life as a husband and father of two, I have travelled the world, had a successful career, and have always kept humor and a positive attitude through it all. I have helped council other Crohns patients and have served on the local CCFA (Crohns Colitis Foundation Of America) board of directors. I honestly believe that my experiences have had a positive impact on my life, and on those I have come in contact with. It is absolutely true to state that "that that does not kill us makes us stronger" and coupled with the knowledge that "this too shall pass", suffering can actually be turned into a positive individual growth experience!

My Medications: A History

Currently, the only medication I take are Humira injections from Abbott Labs.
Humira comes in self-injectable "pens", and I inject myself once every other week. It is an immunosuppresant biologic drug which is amazingly effective in keeping Crohn's at bay. It does have many possible side effects, some serious, and needs to be monitored regularly by a physician. I usually inject in my upper thigh and using an ice pack in advance helps with the pain quite a bit. I've been using Humira for nearly two years now, and my Crohn's has remained in remission the entire time. The only side effect I've noticed is occasional joint pain in my fingers, and I'm not certain if this is from the Humira or just getting older.

My Crohn's Experience: From Sulfa to Humira

My Crohns History:

• 1972: After a wonderful trip to Yucatan, Mexico I came home with severe abdominal pain, diareah, low grade fever that simply would not go away. I spent many afternoons doubled-over in pain.
• 1972: After several tests by my doctor, I was referred to a Gasrtoenterologist who after doing more tests diagnosed my problem as Crohn's Disease. I had never heard of this before but it soon became central to my life.
• 1972-1978: Tried the typical medications of the time such as azulfidine, prednisone, asacol which helped somewhat, but I can't remember ever having a totally pain free day. I remember at the age of 16 pulling over to the side of the road to let the pain subside and praying for "just one pain free day in my life".
• 1979: First intestinal resection
• 1981: Crohn's has remained in remission since the first surgery, but now my gall bladder has problems.
• 1982: Gall Bladder removed
• 1983-1988: Periods of remission broken up by active disease and hospitalizations nearly every 3-4 months due to intestinal obstruction caused by Crohns and scar tissue.
• 1989: Second intestinal resection
• 1990-1999: More periods of remission broken up by hospitalizations due to increasingly worse obstructions.
• 2000: Severe pain and obvious obstruction. Intestine bursts while I am on a business trip and the sepsis nearly proves fatal. Long stay in the ICU and the hospital before returning home to recuperate. This was my third intestinal resection and probably the worst time of my life. While in the ER my heart effectively stopped working and required two periods of CPR to bring back a normal heart rhythm. 
• 2001-2010: Crohn's Disease stays predominantly in remission with only a couple of hospitalizations due to obstruction. I no longer have enough intestine left to sustain proper digestion should the disease come out of remission. Since the pattern for me has been surgery followed by 10 years remission, the doctor recommends that I start on the new biologic medicine from Abbott Labs called Humira.
• 2010-Present: Humira has been effective and I have had almost no incidents of Crohn's Disease flareups for the past two years. I take a Humira injection every other week.

And that's a brief history. I intend to post details and experiences randomly in my posts on this blog and I welcome questions and discussions regarding anything Crohn's related.

Thanks for reading!