Judith’s story
Gastroparesis disrupted Judith’s plans to live an exciting life abroad–forcing her to change careers and live with her parents. But in the decades since receiving Enterra Therapy, Judith is making up for lost time and living her best life.
Judith, Enterra® Therapy patient
Judith, where does your journey with gastroparesis start?
In early 2007 I was 28 years old—teaching English and living in Bristol, preparing to take a year sabbatical and travel to China.
In May, I started having really strange symptoms, like feeling full or uncomfortable very soon into eating. Not really nauseous, just feeling a bit off—but the symptoms would go away in a day or so.
And then—I remember this because it was so sudden—I went home to visit my family and started feeling sick for no reason. I started vomiting quite severely, and it got so bad that by the end of the week I was hospitalized because I’d lost so much fluid. I stayed for a few days and they diagnosed me with a bacterial infection and gave me antibiotics for it, and I was able to finish the school year mostly normally.
Then, several weeks later, because it had all been planned, I moved to China—and it did not go well. I only lasted two months because I was getting sick all the time. So, having given up my job and my apartment in Bristol, I moved back in with my parents in Swansea, Wales. Which, looking back, actually ended up being the best thing for me.
It sounds like you were ill for quite a while. What were your symptoms and treatments like?
Pretty quickly, it became a blur of months and years of living with my parents: regular bouts of being hospitalized, being tested for anything and everything you could think of, getting discharged from the hospital hoping the tests would diagnose me so we could figure out some form of treatment.
I was put on all sorts of meds. I tried nasogastric tubes—they didn’t work. I tried a g-tube that went directly into my stomach—that didn’t work. So eventually they tried an NJ tube which went directly into my intestines. That sort of worked, but only to maintain the very low weight I had reached. At my worst, I was down to about 85 pounds, and I’m now at a healthy weight of 147 pounds. For a few months, I received TPN, which is where nutrition goes into the veins.
And then, about a year and a half later, in the summer of 2009, the bouts of symptoms started to get briefer and further apart, and eventually stopped, for no apparent reason. So I built my strength back up at home for a few months and went back to my teaching job. I managed maybe six months, and then the same things started happening, but even more violently. I think it’s probably because I just didn’t have as much strength as I had before, with my body being so damaged from the first period of illness.
And then it was right back to where I had been: I left my job again, left my flat again, moved back in with my parents, and my health just started spiraling.
Suddenly I’m living at home again all the time, needing so much help. If I was having a good day I’d get up and sit on the sofa, or maybe a friend would visit. My life got so small and so isolated
and insular. My big days out were going to the hospital or getting my hair washed. I just couldn’t do most things. I don’t know how I or my family carried on like that—I was being cared for full-time.
Can you share more about actually discovering that you had been living with gastroparesis?
I was just in this sort of fog. I was being medicated constantly, I was maybe eating a tiny bit. Things were just happening to me. I wasn’t able to process anything or advocate for myself because I was physically and mentally so drained.
What probably saved my life was that my family was constantly fighting to find answers, and I had a very proactive doctor.
By this stage I was diagnosed with Crohn’s disease, which they think is probably a result of everything my body went through. So I had surgery for Crohn’s disease as a bit of a last resort before my doctor in Swansea, who I had been under the care of, started investigating gastroparesis.
She was fantastic and referred me to a gastroenterologist in Chelmsford, outside of London. We talked through my symptoms and I felt that, finally, there might be an answer to my problems which was amazing. He ordered a gastric emptying test (GET). I remember that it was performed on a pretty good day for me, but the results were severe enough that the doctor felt I was a good candidate for Enterra® Therapy.
What made you decide to try Enterra Therapy?
By that stage I’d had a few operations—small, investigative ones, quite a big operation for Crohn’s disease, and then another for a complication from that procedure.
The only other option they talked about was removing my stomach and giving me a bypass so that the problem of vomiting would go away. But obviously that would have left me with other problems, so I was keen to try anything else.
My family and I talked about it, and I was all for Enterra Therapy. I really was. I was so ill that I would have tried almost anything, honestly.
I knew, getting Enterra Therapy, that I would have to take my time and be sensible about recovery—and that it may not have worked at all. But I can’t stress how much it meant to me that something could be done if I got unwell again. Knowing that if my symptoms got worse, we could try adjusting my device settings; that I wouldn’t have to go right back to stopping everything again. That was such a relief to me.
What was your post-surgery and recovery period like?
I was still in hospital in Chelmsford after having my Enterra System put in, and I remember feeling strange. Not ill or sick, but just different.
And I realized after a day or so that I wasn’t feeling nauseous. I had become so used to it that not feeling that way was quite strange. So Enterra Therapy made that much of a difference immediately.
Adjusting to it was really easy. I was physically stronger quite soon because I was able to take on small amounts of nutrition, and it made such a difference. I still spent about three months living with my parents before I even thought about going back to work, and then when I did it was on a very part-time basis.
I know it’s not necessarily the same for everyone, but for me, since my Enterra Therapy system was implanted, there’s been nothing: no recurrence of the feeling of sickness, or any vomiting at all.
It’s been 12 years since you received your Enterra Therapy System. How does having it affect your daily life?
Not at all, really. I had a few appointments after the surgery, and then 6-monthly appointments. Eventually, I was down to having them once a year. I think six years ago, my doctor told me, “You’re fine. It’s a six hour journey to see me; let’s not set another appointment. Give us a call when you need to, but otherwise, save yourself the trip.”
And between all of those appointments, I’ve never had to have my settings changed. I’ve always been on the lowest setting.
I did go back after the pandemic to check my battery levels, which were running low. So we’re working on planning the procedure to change the battery, but apart from that, there’s been nothing—no problems at all.
What can you tell us about life with Enterra Therapy and how you’re doing now?
It’s just unbelievable, looking back. It completely affected my entire life. I couldn’t work, couldn’t really make any plans. It was pretty rubbish.
It took a big chunk of my life, it really did. Before all this happened, I was going to go abroad and travel the world. I never quite got to do all of that, but I suppose that’s life.
I’m trying to make up for all of that now. I always figured I’d go back to teaching, but now I own my own business editing academic resources. I go for a walk when I want, or take an afternoon off, or go down to the beach—which is great.
I honestly feel healthier now than I used to before I got ill. I suppose it’s just because I like doing physical things, but I also think it’s because I felt I had to take better care of my health. So I do a lot of yoga, a lot of walking. I don’t think there’s anything that I’m being prevented from because of gastroparesis.
Having this device has changed my life completely. Or, it’s given me back my life—I think that’s a better description of it. It’s been absolutely incredible. I’m able to do what I love to do. Life is good.
Judith’s experience is unique to her and individual results may vary.
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IMPORTANT SAFETY INFORMATION
Enterra Therapy for treatment of chronic, resistant to medication nausea and vomiting associated with gastroparesis caused by diabetes or an unknown origin in patients aged 18 to 70 years: patients should always discuss potential risks and benefits of the device with their physician.
*HUMANITARIAN DEVICE
Authorized by Federal law for use in the treatment of chronic intractable (drug refractory) nausea and vomiting secondary to gastroparesis of diabetic or idiopathic etiology in patients aged 18 to 70 years. The effectiveness of this device for this use has not been demonstrated. What does this mean?