On Thursday 16th January, Kyd underwent surgery on his bowel at the John Radcliffe Children's Hospital in Oxford.
Kyd had his bowel flushed, known as an evacuation of the bowel, and then an ACE tube fitted via the appendix and into the bowel itself in which he will have daily washouts through a tube in his side.
Kyd has suffered from Chronic Constipation throughout his life and he has been through the mill when it comes to medications and illnesses due to the condition. We have been through every diet, allergy test and every cocktail of medications that the doctors could prescribe, including in the last year, using adult strength medication instead of the ones suitable for his age. He has suffered with severe pain and swelling which have resulted in his inability to preform the smallest of everyday tasks like walking or even dressing. At one stage he even had to have two different sizes of clothes, one for the first part of the week and one for when he was too swollen to fit the first. He still wears nappies and for an 11 year old boy, this isn't ideal but manageable and less embarrassing than soiling his pants.
It is a common condition in children who have Down Syndrome and can often be helped and controlled with medication and diet but for others it can result in surgery. Everybody's bodies react differently to different things, including those with Down Syndrome, no two cases of Down Syndrome are the same despite what myths tell you, they all have their own issues good and bad.
What is Chronic Constipation?
The definition of constipation is opening the bowels, which doctors call stool frequency, less than three times per week, or straining, having difficulty passing stools or passing dry, hard or pellet-like poo regularly. The direct cause of constipation is not enough water in the stool. This occurs because of the diet not having enough water-retaining elements (fiber) or because the stool is kept in the rectum too long, allowing the colon to reabsorb more water than usual. It can cause side problems like incontinence of the bladder, nausea, vomiting, lack of appetite and swelling of the stomach. It is also linked with contributing to a poor immune system. (Chronic just means 'long term' or 'severe'.)
Chronic constipation: What causes it?
After eating, food moves through your digestive tract. The intestines take water and nutrients from the food. Normally, the process continues until a stool is formed. Squeezing contractions in the intestine then pass the stool out of the body.
The most common causes of constipation are insufficient fibre or fluids, inactivity, changes in routine that alter bowel habit or ignoring the body's call to go to the toilet.
There is a strong association with stress and emotional disturbance, but more research is necessary to better understand how constipation happens and to unravel the mysterious links between the gut and the brain.
In children with Down Syndrome, two factors exist to make constipation more likely: low muscle tone and decreased motor activity. Both of these make the colon more likely to retain stool for longer periods, leading to loss of water from the stool.
If left untreated?
Constipation can lead to:
(1) Rectal fissures: tears in the rectum leading to bright red blood on the surface of the stool and on the toilet paper, but not mixed in with the stool;
(3) Stretching of the rectum leading to the loss of the sensation of the need to have a bowel movement.
This last problem can further lead to the weakening of the rectal muscles (sphincters) and cause the child to have bowel movement accidents
The usual treatment of constipation is dietary: increasing fiber, fruits and vegetables. In bottle-fed babies, the introduction of a stool softener is used, such as corn syrup (Karo).
Increasing the amount of fluids the child drinks is helpful; and in older children, decreasing the amount of constipating foods (milk products, bananas, white rice) may also help.
Diet plans and allergy tests may eliminate natural causes to the problem.
Medications such as Lactulose, Movicol and Dulcolax is also used in children and adults. All of these soften the stool by adding water to the stool.
If the above doesn't work you may be offered enemas or rectal wash outs called Peristeen which is an anal Irrigation system.
Serious long term damage to the bowel from the above can lead to surgery such as having an ACE stoma fitted (daily washouts through a tube fitted into the bowel, reversible if the bowel cooperates and heals itself over time) or a Colostomy bag (a non reversible procedure that leaves the patient with a permanent bag attached to their body).
More serious cases: Hirschsprung disease and Hypothyroidism.
Hirschsprung disease is a condition in which a segment of colon directly above the rectum is formed without nerve endings. This condition makes it impossible for that segment to push the stool along into the rectum; the stool backs up just above the rectum and only enters the rectum when enough stool backs up to push the front along (like a train caboose pushing the engine). These babies typically do not pass stool in the first 48 hours of life, and are chronically constipated. Children with Down Syndrome do have an increased risk of having Hirschsprung disease, and sometimes it can be very difficult for the doctor to tell the difference between Hirschsprung and the normal stooling pattern of a baby with Down Syndrome. The diagnosis is made by first performing a barium enema on the child, and if that exam is suspicious, confirmed by a rectal biopsy. Treatment is the removal of the segment of colon without the nerve endings (the length is variable from child to child). The traditional treatment was performed in two stages: the first surgery attached the ending of the colon to a specially made opening (colostomy), and then reattachment of the rectum was performed months later. Now, however, many surgeons are removing the involved segment of colon and reattaching the good colon to the rectum in one procedure. This surgery solves the problem of constipation, though children without long segments of colon may have problems with diarrhea and malabsorption for the rest of their lives.
Constipation is also one of the signs of Hypothyroidism, another condition more common in children with Down Syndrome. Because the signs and symptoms of Hypothyroidism can be well hidden in children with Down Syndrome, a regular thyroid screening blood test is recommended every one to two years, even if the child is growing well.
Luckily Kyd hasn't got the above but is tested yearly for hyperthyroidism just to make sure.
This is a brand new start for Kyd, something we have waited a long time for and I really hope the ACE tube makes way for a better and pain free life for him.
If you have any questions on a parental basis please don't hesitate to ask below on the comments and I'll try and either offer some help or point you in the right direction of someone who will know more.