Margaret is a perfect example of a woman in her 70s who is busy, active and living her best life despite having to manage a challenging and sometimes changeable daily bowel routine.
Approximately seven years ago, she noticed that her bowel wasn’t emptying properly and had become much slower. As she became increasingly constipated, she also began to experience headaches, nausea and fatigue. Margaret was diagnosed with a type of rectal prolapse known as internal intussusception, where the rectal wall collapses or telescopes upon itself. She has seen many health professionals, including gastroenterologists, colorectal surgeons, dietitians, pelvic floor physiotherapists and nurse continence specialists.
Margaret has had several procedures including a rectopexy, a procedure to repair her prolapse. This worked briefly, but eventually her rectum collapsed again. Her colorectal surgeon advised against any further surgeries, including an ileostomy which she would prefer to avoid unless it is necessary.
Margaret currently needs to take up to six or seven laxatives per day to get her bowels moving effectively. This is usually a combination of stimulants to make the bowel more active and stool softeners to make passing a bowel motion more comfortable. She also makes sure she eats well, includes fermented foods such as sauerkraut and kefir in her diet and takes a daily probiotic and vitamins. Regular exercise is also an important part of her daily routine, aiming for 10,000 steps per day.
Margaret has tried a variety of treatments and therapies in her self-help journey. She does pelvic floor exercise classes and sees a chiropractor regularly and says she is fine tuning her life and her bowel management all the time. In the last two years, she has developed a close relationship with nurse continence specialist, Merrill who works on the Foundation’s National Continence Helpline – 1800 33 00 66. Margaret feels fortunate to be able to call the Helpline when she requires information and support. She says she found out about the Helpline when researching on the internet.
Always reading, researching and willing to try new medications and other options, Margaret often calls Merrill for guidance. “It’s lovely to have that support and Merrill always has useful advice,” she says. “When I take the stimulants, they can interfere with my sleep. I was having trouble with this, and Merrill suggested it might be better to take them early in the morning instead. This worked so much better for me. All those recommendations are so useful and Merrill has been a great help.”
Margaret’s situation has made her hesitant to travel for fear not only of accidents, but also not being able to manage her bowel function or access the support she may need whilst away. Anxiety around this has been a big issue for her. “We’ve travelled so much over the years but as my condition has worsened, I now get more stressed about it,” says Margaret. “I would love to take my grandchildren to Fiji for a holiday, but I’m worried that something might happen whilst I’m away and I won’t be able to manage,” she says.
“Even daily, I can’t just pop down to the shops spontaneously. Everything is planned around when I take my medications, then wait for my bowels to move, so I’m usually at home in the mornings. It doesn’t prevent me from doing things, but it does involve a lot of planning and of course I always need to know where the nearest toilet is,” says Margaret.
Constantly having to plan her day around her medications and bowel movements can be very tiring, but Margaret says she perseveres and has been grateful for the care she has received from her colorectal surgeon, as well as the support team of nurses and physiotherapists who have been an important part of her journey.
“People need to communicate,” she says. “I talk openly with those closest to me, so I’m not always having to explain myself. It can be very frustrating for someone dealing with this, but support is out there. You just need to search for it like I did.”
Margaret mentions she is pleased to share her story and offer support to anyone who is experiencing something similar. “If I can help someone else, I’m happy,” she says.
What is internal intussusception?
Internal intussusception is a type of rectal prolapse where a part of the rectal wall folds down on itself like a telescope and can block or obstruct the bowel. The rectum stays inside the body and does not protrude out. This may result in constipation, incomplete emptying of the bowel, incontinence, or may sometimes be asymptomatic (i.e. no symptoms).
What is Rectopexy?
Rectopexy is surgery to repair rectal prolapse, which is when part of the rectum or large intestine collapses and may come out of the anus. Rectal prolapse can lead to an inability to control bowel movements and stool can leak from the anus. Rectopexy surgery restores the rectum to its usual position in the pelvis.
What is an ileostomy?
An ileostomy is performed to help direct digestive waste, or faecal matter, out of the body, often due to a bowel condition such as bowel cancer, inflammatory bowel disease (e.g., Crohn’s Disease) or bowel trauma. This involves surgically making an opening that connects the small intestine to the outside of the abdomen. For some people, this surgery is temporary, often to allow the large bowel or anus to recover and can be reversed once the body has healed.