It’s 8:00 p.m. on a Friday night. Most of my friends are out for dinner, going to movies, or finding some place to listen to music. I’m at home, hunched on my toilet, with my arms wrapped around my cramping abdomen while my bowels – well, you get the picture. I have Crohn’s disease.
Treatments for Crohn’s disease range from steroids to surgeries, from anti-diarrheals to immuno-suppressants to antibiotics, and even a new generation of drugs that blocks the inflammation process in the body. One would think there’s something for every problem by now, in looking at the treatment literature. I, along with thousands of other Crohn’s patients, have tried most of these at one time or another, with varying degrees of success.
Whether or not a treatment is even temporarily effective, there are still problems with most of the drugs. Long-term use of steroids can cause serious side-effects. Drugs that suppress the immune system open the door to infections. Excessive use of antibiotics has led to more resistant bacteria. Suppressing diarrhea and treating with fluids is a “band-aid” solution at best. The newest anti-inflammatory drugs, useful in other diseases like rheumatoid arthritis too, haven’t been on the market long enough to know what the long-term effects might be. And of course while surgery may be necessary at times, it isn’t anyone’s first choice of treatment, and carries its own load of risks, from anesthesia to post-operative complications.
The main problem with all these treatments is that none of them is a cure. There is no cure because the cause of Crohn’s isn’t known. Both bacteria and viruses have been considered, but none have been proven to be the cause. Researchers have been able to exclude diet and allergies as causes. Some things believed to play a role in the disease include immunological, environmental, and even genetic factors, but their exact role is unknown.
My greatest wish is that researchers would find a cure for Crohn’s disease. The numbers of people being diagnosed each year with Crohn’s is increasing, which undoubtedly indicates something, but I don’t know what. If it is an environmental factor, then whatever that factor is must be increasing or spreading in some way. If it’s a gene, or a genetic mutation, it must be becoming more common. The cost of Crohn’s disease is not just to the patient, it’s also increasing the cost of health care in general, although not to the extent that heart disease does.
Since my wish for a cure for Crohn’s doesn’t appear likely to be granted any time soon, I’d really like to find a cure, or at least a more effective treatment, for abdominal cramping. My two worst symptoms are diarrhea and abdominal cramping with concomitant pain, sometimes severe pain. While my diarrhea can be slowed with available drugs, it invariably returns. Pain medications can help the pain of abdominal cramping, but it doesn’t stop the cramps. And nothing I’ve been given has stopped the cramping action.
Currently there are two groups of drugs used to control cramping and diarrhea. The first group affects the muscles in the intestinal tract, which slows the diarrhea. They include drugs like loperamide (Imodium TM); narcotics like diphenoxylate HCl-atropine sulate (Lomotil TM) and codeine; and antispasmodic medications that block nerve-impulse transmission, such as hyoscyamine sulfate (Levsin TM), dicyclomine HCl (Bentylol TM), and hyoscine butylbromide (Buscopan TM). I’ve used most of these, with varying degrees of effectiveness. Imodium may work for ordinary diarrhea, but it isn’t much help with the explosive diarrhea that marks a flare of Crohn’s disease. Lomotil TM works a little better for me, but the abdominal pain remains. Codeine has never remained in my system long enough for me to actually know if it will work; I invariably throw it up. Bentylol TM helps to relieve some of the pain, but it doesn’t stop my pain or cramping.
The other group of treatments for diarrhea with cramping and pain are bulk-formers that firm the stool and adjust the frequency of movements. These include treatments you can get in any drug store and most grocery stores, such as Metamucil TM and other fiber treatments with bran, psyllium and ispaghula husk derivatives. They aren’t always the best choice for Crohn’s patients; I’ve used them on the advice of my doctor more often when my bowels aren’t moving than when they are. Bile salt binders are also used to treat diarrhea and work best when the small intestine is moving too quickly, which is a situation that prevents Crohn’s patients from getting the nutrients they need from their food.
I would love to see a more effective medication for cramping and diarrhea. I expect fiber was being used 500 years ago. I know that medications like Lomotil TM were used by my grandmother, and she’s been dead for nearly 30 years. Even when they stop my diarrhea, these medications don’t stop the cramping and pain. Bentylol TM, as I’ve said, helps me, but it doesn’t stop the pain and cramping. I’ve actually been given morphine for the pain of abdominal cramps, and it didn’t make the pain stop. I would give almost anything for a drug that quickly and effectively stopped the abdominal cramping and pain of Crohn’s disease, every single time it occurred. In the meantime, you know where I’m likely to be next Friday night.
