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.