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Huntington's and Gastrointestinal Problems

In a recent article from Help4HD, entitled Gastrointestinal Symptoms in Huntington's Disease, three women describe symptoms presented by their loved ones before as well as after becoming symptomatic with Huntington's Disease.

Articles such as this, which document anecdotal evidence of symptoms are very helpful to the HD community as they often bring forward issues that are difficult and possibly embarrassing for many of us to discuss openly, or even in the privacy of our doctor's offices.

One of the issues discussed in the article was diarrhea and how detrimental this can be to anyone, let alone someone with HD. My wife, Sheila, who is now in late stage HD, was one of those affected by diarrhea for several years. The condition was so severe that it led to weight loss and kept her from enjoying things that most of us take for granted such as a bedtime snack, going to a restaurant or even a trip to the beach for a picnic.

At first, like anyone, we felt it was just a bug and that it would end but after a week of this we decided she should see her doctor. We have a fantastic doctor who listens well and of course he did the usual tests, being sure to rule out things such as cancer. The tests were negative to our relief and so he suggested that IBS was most likely the cause, however, nothing he prescribed and changes in diet had no effect.

Her condition seemed extreme to us. Diarrhea would be immediate as soon as she ate even one bite and she would have difficulty making it to the washroom. It was quite debilitating to say the least and she lived with this over a period of four years. She could no longer eat after 4 pm as this problem would persist throughout the night if she ingested anything at all. She became reclusive fairly early, not really by choice but rather by necessity.

One evening I was sitting and watching a show on television called Mystery Diagnosis. I called Sheila into the room to watch it as it was about a woman whose symptoms mirrored that of her own. She displayed post-prandial diarrhea (diarrhea after eating) and a fear of eating in order to avoid diarrhea. She also did not respond to therapies intended for IBS. They even had a name for the condition- Habba Syndrome.

Our doctor had never heard of the condition but he tore off a large piece of paper from his examining table and drew a picture of the digestive system. He said, "If your theory is correct, and I prescribe you a bile binding agent, your diarrhea should stop or at least be reduced within a few days. It's safe, so let's give it a try." He then prescribed her cholestyramine, a powder that you mix with water or juice and then drink about a half hour before you eat. It is normally prescribed to patients with high cholesterol.

Habba Syndrome is an association between a dysfunctional, intact gallbladder and chronic diarrhea. Patients with the disorder have chronic diarrhea, meaning they have three or more loose bowel movements per day. In my wife Sheila's case, her diarrhea ended immediately upon taking her first dose. There was no waiting for a few days. Bowel habits returned to normal after four years of diarrhea, trying to maintain hydration levels and dealing with being a recluse. She was now able to have some freedom.

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