Let’s talk about one of the “untalked about” symptoms of Huntington’s disease: gastrointestinal (GI) issues. According to Dr. LaVonne Goodman’s article “Gastrointestinal Problems in Huntington’s Disease,” “Human study shows that inflammation in the esophagus (swallowing tube) and stomach is common and occurs more frequently in Huntington’s disease (HD) as it progresses. Study also shows that individuals often do not complain. Lower GI function has not been investigated in individuals with HD, but if mouse models of HD are predictive, we can expect problems there, too. But the biggest contributor to gut distress in HD is likely due to medication side effects, less intake of water and more sedentary lifestyle as the disease progresses.” More details, including suggested treatments, can be found here: http://hddrugworks.org/dr-goodmans-blog/gastrointestinal-problems-in-huntingtons.
Anecdotal evidence suggests that lower GI function is indeed a problem for many with HD, just as upper GI function is. Three of the members of Help 4 HD International’s Executive Board (Katrina Hamel, Vice President and CFO; Katie Jackson, President and CEO; Sharon Thomason, Executive Secretary and Director of Education) decided to share their stories.
Katrina’s Story
Sometimes, people with Huntington’s Disease experience gastrointestinal complications due to medications, which is common in people outside of the HD community as well. In my mother’s case, she took zero medications. Believe me when I say she needed them, because she truly did, but medications were not the reason for her gastro discomfort.
As my mom’s disease progressed, she had many body systems change and slowly fail her. Before she📷 had psychiatric issues, before she had behavioral issues, and before her chorea, she seemed to have an “upset stomach”; we ALWAYS had Imodium and Pepto in our medicine cabinet. As time moved on, and she continued to physically change, so did her bowels. Some days, my mom would go to the bathroom several times with no results. This would frustrate her to no end. Her stomach would become distended, and she would have trouble eating. Can you imagine? This must have been so uncomfortable and was also something that triggered perseveration.
This wasn’t always the case, though; she would also have days where she would go too frequently. On these days, we needed to stay close to home because her bowel movements were constant. Her skin would become raw. We needed to clean the bathroom several times a day, and I could always hear her growling, upset stomach. Some days, she wouldn’t be able to get from her room to the toilet quickly enough, and she would leak or have full blown accidents on the way there. This caused her so much shame, even though we tried hard to avoid her feeling that way. My mom ate a balanced diet, and despite our efforts, we never did find any type of food that made the GI issues better or worse.
Dr. Goodman suggests that gut motility and absorption of nutrients are both impaired in patients with HD because of a compromised lower GI function. This was the case with Katrina’s mother. Dr. Goodman also cites a 2009 study which shows that 32 percent of HD patients had an inflammation of the esophagus (esophagitis), and almost an equal number had inflammation of the stomach (gastritis). Many experienced both. This is the case with Katie’s husband.
Katie’s Story
I remember when I first found out my husband was at risk of inheriting Huntington’s disease I went to town, looking up as much as I could to learn more about HD. What I read was terrifying. To think my husband was going to have to endure the suffering I was reading was an indescribable feeling. My husband now has been living with Huntington’s disease for over 13 years. Little did I know upon that first google search that all the symptoms I was reading about weren’t going to be some of the most challenging symptoms we would have to deal with.
One of the most extreme struggles we’ve dealt with is issues with my husband’s stomach. That first📷 google search, I didn’t see anything about gastrointestinal problems. Even when my husband started experiencing severe stomach pains and excessive diarrhea, I could still find very little information about this in the searches I did. The one place I was able to find a lot of information about GI issues associated with Huntington’s disease was in the support groups on social media. It was a common topic. Caregivers are constantly talking about how their loved ones are suffering with GI problems.
The symptom my husband was experiencing was not only incredibly uncomfortable and sometimes painful for him, but it also scared me. I was constantly wondering if he was dehydrated, and keeping my husband at a stable weight once the GI problems really kicked in was impossible.
My husband has been on anti-diarrhea medication now for over six years, and even with that medication on board, he still has problems daily. We have had him see our primary care doctor as well as a GI specialist, and no one can figure out what is wrong. They thought he may have Crohn’s disease, but they ruled that out. When they couldn’t figure it out, his primary care doctor said he was probably dealing with IBS (Irritable Bowel Syndrome). I accepted that diagnosis until I started seeing things pop up all over the internet from HD families living with the same problem I was seeing.
A little over a year ago, we placed Mike in a care home, partially because of the severity of GI symptoms. Around Christmas time this year, we noticed that my husband started throwing up. Not 📷📷only was he throwing up, but he was intentionally making himself throw up. I brought my husband home for Christmas to make sure he was here when the kids woke up Christmas morning. Right when we woke up, Mike started throwing up everywhere. I decided to send my kids to my mom’s for the day. They deal with HD already, and I wasn’t willing to let the memory of Christmas with their dad throwing up all day be a memory they had of him. My mom came and picked my kids up, and I spent all day in a dark room holding my husband as he made himself throw up all day. He is pretty much nonverbal at this point, but he did express to me that his stomach hurt, and when I asked him how he felt, he responded, “like crap.” That is a Christmas I will never forget. In order to protect our children, my husband and I weren’t able to spend Christmas with them that year. Was it hard spending Christmas isolated away from our children and family? Of course, it was. The isolation wasn’t the hardest part, though; the hardest part was watching my husband suffer the way he was with stomach pains all day.
The throwing up and stomach pains continued for about a month. We talked to our specialist about what was going on. One doctor thought it may be a psychiatric symptom, kind of like an OCD behavior. I still, to this day, believe that may have been part of it. When I asked Mike why he was making himself throw up, he told me it was because his stomach hurt all the time, and it was the only thing that made him feel better. So now, myself, my mother-in-law, and the nursing staff at the facility my husband is at have really started watching him closely. We are concerned about dehydration and weight loss, but our biggest concern is Mike’s comfort. Can you imagine having to make yourself throw up multiple times a day to try to get some relief from the stomach pains you’re experiencing? It’s awful. We put Mike on Protonix as well as anti-nausea medication to see if that would help. After a while, we think it helped because we don’t see him making himself throw up anymore. I am not sure if this is because of the medication or because he has really cut back his eating to hardly anything now.
If your loved one living with HD is experiencing GI problems, please know you are not alone. There are a lot of us out there trying to help our loved ones on our own with this symptom because it is rarely talked about, and no one really knows how to help our loved ones.
Like any of the untalked about symptoms of HD (hypersexuality, suicide, psychiatric), GI falls into this category as well. It is hard to talk about these things, but you are not alone, and we need more research about HD and the gut. Like all HD symptoms, your loved ones may not experience GI problems, just like your loved one may never manifest chorea over the course of the disease. I am just noticing there are a lot of common stories out there, and I think we need to talk about this issue.
Sharon’s Story
My husband and two of his brothers suffered from HD. Paul and his youngest brother both had📷 severe problems with vomiting. No matter what they ate, or when, chances were, it was coming back up. Their mother, Gwen, was the caregiver for both, and she was from the old school South where we believe that one of the ways you show love for people is by feeding them. It was so frustrating for her not to be able to feed “her boys” the way she wanted. Paul stopped eating because he either choked on or vomited up his food. Paul was still mobile at that time, so the decision was made to insert a feeding tube so that he wouldn’t choke or vomit anymore. Unfortunately, a feeding tube does NOT prevent vomiting, and with vomiting comes aspiration. With aspiration comes pneumonia. Paul continued to vomit and aspirate, even with the feeding tube and not eating. The same was true of his brother, who also had a feeding tube and went through a continuous cycle of vomiting, aspiration, and pneumonia. Both ultimately passed away from pneumonia, a direct result of the GI symptoms.
Conclusion
As always, if your loved one is experiencing GI issues, contact your care team right away. It must be terribly uncomfortable for our loved ones to have to deal with these issues, and if there is anything we can do to relieve some of the pain, we should try. Until then, families will continue to help each other through these symptoms, giving advice to each other like we always do!