This article was originally written for our award-winning membership magazine Connect. To find out more about the benefits of being a member with us, or to join from only £1.25 a month, click here.
I was diagnosed with Ulcerative Colitis in my 20s.
Alwine
Living with Colitis
In July 2015, aged 57, Alwine had an elective proctocolectomy. This was after being told that the crypt abscesses in her colon were so severe that it could perforate.
She was given a temporary ileostomy and had a J-pouch formed out of her small intestine during the same operation. The J-pouch replaces the function of the rectum and stores the stool and was later reconnected to the anus and anal sphincter, allowing her to have normal bowel movements again. The operation is often referred to as the takedown.
Unfortunately, since her surgery, Alwine has had both cuffitis and pouchitis – inflammation of the rectal cuff as well as the J-pouch.
The chances of getting cuffitis should have been slim as I only had a small amount of my rectum left but I had problems right from the start.
Alwine’s consultant had told her that pouchitis was also a risk but usually treatable. However, the pain and nausea from the conditions has never really gone.
WHAT IS POUCHITIS?
After a colectomy, or surgical colon removal, some patients have an ileo-anal or J-pouch where the last part of the small intestine is connected to the anus. With pouchitis, the pouch – which collects stools before they are passed – has become inflamed.
Symptoms: Increased frequency and urgency, diarrhoea, cramps, and watery and possibly bloody stools. Patients can also have a high temperature.
Treatment: Antibiotics such as ciprofloxacin or metronidazole are the usual treatments. Probiotics can also help relieve symptoms but are not available on prescription.
WHAT IS CUFFITIS?
Cuffitis is inflammation of the rectal cuff that links an ileo-anal pouch with the anal tissue.
Symptoms: Similar to pouchitis and there is often red blood on loo paper after wiping.
Treatment: Mesalazine suppositories or steroids.
What plagues Alwine most is urgency and frequency, along with the burning sensation on the skin around the anus. This can be lessened by being careful with what she eats.
The chances of getting cuffitis should have been slim as I only had a small amount of my rectum left but I had problems right from the start.
Alwine also often feels sick after eating. “You have wind and stomach cramps – and the main thing is that you go to the toilet all the time," she say, "so it’s not much different from Colitis.” Her sleep is frequently broken as she feels the urge to go to the loo a couple of times each night.
If I eat literally only white rice, potatoes, white pasta, chicken and no fruit apart from banana, as well as no spicy food, then I do function better.
“Very rarely I have night-time incontinence too, more so in the first year after the operation, as your body seems to adapt over time. However, if I am in a very deep sleep it can still happen now.”
Alwine has had three pouchoscopies since her 2015 surgery and tried a number of medications. Most recently, she has been prescribed mesalazine suppositories and been told that the ongoing issue is mainly cuffitis with mild pouchitis. Alwine continues to have symptoms of both.
Despite her post-operative complications, Alwine tries to remain positive. She is very active and plays league table tennis and enjoys running. Both these activities can be tricky as the urgency issues are far worse, especially after eating in the evening.
I would still advise people to go for the J-pouch operation if it is offered, but to make sure they speak to their surgeon and also undertake their own research.
“While my experience has not been good,” she says, “I would still stress and reassure people that pouchitis or cuffitis are not common complications and most people only ever have one or two episodes in their lifetime.”
