Life with Hirschsprung’s Disease: Relapse & Setbacks

hd-ribbonSometimes I don’t even have the will to write. All I can do is cry and pray, and try to be strong for my little one who lives with Hirschsprung’s Disease (HD). 

Jimmy was diagnosed with HD when he was just two days old, at which point he was rushed into emergency, life-saving surgery at Children’s Hospital Colorado in Aurora. The surgeons performed a “pull-through” surgery, which removed 7 cm of aganglionic bowel and re-attached the functioning bowel to the anus.

This video pretty much sums up the key points about diagnosis, treatment, and prognosis.

Jimmy has not required hospital admission for over a year – although he does miss a lot of school and play time for his illness. We boost his immune system regularly with probiotics (kefir and kombucha are mainstays), whole foods (avoiding known triggers like bananas, sugar, high-acid foods, all lactose, white rice and potatoes), and integrating herbal pharmacy into the kitchen – garlic, tumeric, raw honey, ginger and peppermint are all great allies for tummy trouble and frequent infections.

But sometimes it’s just not enough. 

Post pull-through, Jimmy has been admitted to the hospital more than a dozen times, staying 3 to 5 days at a time, for a rare but serious complication called enterocolitis (in his short 3 years on this planet!). It’s ironic that just two weeks ago I published this article celebrating our milestones with HD, after which we found ourselves in the hospital for four days. (We just got home yesterday.)

As the nurse mentions in the above video link, pull-through surgery is not a cure-all, it’s just the beginning.

Enterocolitis happens when fecal matter gets trapped – because the bowel is not functioning optimally – and begins to putrefy in the gut. Bowel movements become more erratic, and suddenly there’s an explosive release with a lot of liquid. This is usually accompanied by a distended abdomen, vomiting and fever. And just like that, we’re on our way to the hospital, again.


From this slide presentation by Maha Hmeida

It may surprise some of my readers to learn how much we rely on the modern, corporate medical system. Of course I give Jimmy homeopathics when he becomes symptomatic, and 6 times out of 10 they are strong enough, given at the right time, in the right dose, and the right remedies, to keep us out of the hospital.

For example, here are some of my go-to remedies when Jimmy gets diarrhea with vomiting and fever:

  • Arsenicum Album – restless, pale, cold and worse for cold, better for warmth, periodicity, thirstless except for small sips which are immediately vomited; watery, acrid diarrhea
  • Belladonna – when the fever comes on suddenly, is extremely high, wants to be very still, better for pressure on the affected part, refuses to drink, twitchy
  • Cina – angry, irritable and twitchy. He was helped tremendously by this remedy for the after-effects of an antibiotic called metronidazole which gave him mini-seizures.
  • Colocynthis – restlessness with severe abdominal pains “ameliorated by pressure, by lying face downward; by bending double…severe cutting, cramping pains in the abdomen”
  • Lycopodium – Loud tummy rumblings, abdominal distention/bloating; improved by passing gas
  • Pulsatilla – restless, weepy, craves peanut butter, thirstless, bloating with distention, nausea (this is a close “constitutional” for Jimmy, because it matches how he is most of the time, even when he’s not sick.)
  • Sulphur – “rotten egg” smell from stool and gas, so strong it permeates the house (really, I’m not joking.)

(Rubrics from Morrison’s Desktop Guide)

There are literally hundreds of remedies to consider for “diarrhea, vomiting, fever”, which is why a quick differential is imperative to find just the right one. Also, with a fast-moving acute, we want to see improvement within minutes. These three concomitants will dehydrate anyone quickly and dangerously, and when Jimmy is refusing to drink, or can’t keep anything down, we are also on the phone with the ED at Children’s Hospital Colorado.

Hirschsprung’s Disease is a mechanical dysfunction that interferes with one of the most basic processes of life: pooping. I haven’t yet found a remedy that will regrow his colon, or reactivate the dysfunctional ganglion cells that are keeping him from staying healthy and having the energy to keep up with his friends at school. In the meantime, a high-fiber diet, impeccable hygiene, frequent irrigations and enemas and trips to the hospital have become a way of life since Jimmy was born. I never thought I’d be this close to the medical establishment, but the whole experience has given me a new-found respect for emergency medicine and pediatric specialties, AS WELL AS a greater confidence in my own abilities as a holistic healer.

Do you have a special needs child? Are you a full-time caregiver for a family member? How do you cope? What have you learned? Share your experience! 




One Comment on “Life with Hirschsprung’s Disease: Relapse & Setbacks

  1. Pingback: Natural interventions for Viral Gastroenteritis – The Holistic Homestead

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