Adjusting to life as a doctor with a colostomy
Authors: David Parkins
Publication date: 11 Sep 2004
David Parkins (who last week told us about his career changes after having a single grand mal fit [ 1 ] ) now shares his experiences of having a colostomy and gives some advice
I knew that it was very likely that I would need to have a colostomy, but when the consultant colorectal surgeon confirmed my suspicion it still came as a bit of a shock. I thought, “stomas are for old people, they smell, they're not cool or sexy, and they're certainly not for doctors.” All of these prejudices and more were tested in the next few months; some proved to be partly true while others were just blown out of the water.
In the mid 1990s I'd developed an abscess in the ischiorectal fossa, which led to fistula formation. This was laid open a few times, and I'd also had a Seton drain in for a short while. My symptoms settled, and I continued a fairly uneventful life as a consultant in accident and emergency medicine until September 2001 when pain, sepsis, and rigors started again.
My worst fear before returning to work was breaking some bad news to a relative when my stoma would decide to “work.”
A magnetic resonance imaging scan confirmed spreading sepsis, and the previous treatment was repeated. I managed a brief return to work in February 2002, but the symptoms persisted and I needed radical surgery to “lay it open.” The postoperative period was rocky, and I was soon on intimate professional terms with many of the medical and nursing staff in the small district general hospital where I work, having been a surgical inpatient for five weeks, as well as seeing radiologists, gastroenterologists, dermatologists, and anaesthetists.
By April 2003 my symptoms were worse, with pain, rigors, and anaemia topping the list; I was also depressed. At this stage I was seen again by a colorectal surgeon, who confirmed my fears that without a colostomy and another laying open my symptoms would persist and I might become incontinent. With a big swallow I agreed to have the stoma.
The ultimate irony of the preoperative preparation for colostomy is that you are dosed with Picolax 24 hours before surgery, so for the last few hours of its functional life your rectum works overtime. My postoperative recovery was fairly uneventful and now that my perineum was healed I was exactly what my surgeon said I would be: an accident and emergency doctor who happened to have a colostomy.
Highs and lows
Living with the stoma has had its highs and lows. It has been a fairly steep learning curve, helped primarily by my local stoma therapist. At first there was no logic to the colostomy's activity. I read all of the available advice sheets about what I could eat and drink and what to avoid. Most of this is common sense; food and drinks that cause alteration of bowel habit in “normal” people cause the same effects in people with colostomies, albeit with occasionally more noticeable signs. A year after surgery I have now developed a “pattern.”
It has been necessary to make some adjustments to the way I work. Without being too graphic, the gastrocolic reflex after breakfast can be a hindrance to having a shower, getting dressed, and going off to work in record quick time. I now get up at 5 30 am and have a solo breakfast, then sit and listen to Radio Four while nature takes its course. By 7 am I'm ready to wake the rest of the household with breakfast on the table.
Tips for dealing with chronic illness
Make early contact with an occupational health consultant
Take out a loss of earnings insurance policy today
Don't accept early retirement unless you're really ready for this, intellectually and financially
Get regular sick notes from your general practitioner. Keep photocopies of each note
Make early contact with involved professionals—for example, a stoma therapist
Whilst on sick leave keep up to date professionally as much as possible
On return to work don't be scared to ask colleagues for clinical advice and support. Consider observing a few sessions first (obviously revalidation will make this mandatory)
Don't despair. Life after illness is possible and even enjoyable
The interruption to this routine is when I'm on call; an urgent summons in the small hours means five minutes delay while I change bags and dress, although the simple act of waking can itself promote colonic activity. Since I live within 10 minutes of work I can still be in fairly quickly.
I made an early decision to be quite open about my surgery. I don't exactly go up to strangers and tell them that I have a colostomy, but certainly all of the staff in my department know. Since I've developed a parastomal hernia it's more difficult to hide anyway. The only activity that I'm banned from at work is manual handling; usually lifting a patient on a spinal board from the ambulance stretcher on to our trolley. At first I used to feel that everyone was thinking, “Arrogant ****, why can't he lift with the rest of us,” but after telling our senior clinical nurse my dilemma the word has spread, and I now get admonished for even laying a hand on the stretcher.
Tips for dealing with a colostomy
Plan your day around how your stoma functions
Be honest; if it “goes off” just tell the truth. “I've got a colostomy”
Always have spare bags (precut to size) plus your other “kit” available in a bag or pocket. I always carry some spare eau de cologne as well
Avoid large meals in the middle of the day; as if any of us have the time anyway. Also avoid food and drinks that cause excess gas, unless it's not going to be a problem. Curry is best confined to weekends when not on call
Discuss your unique problems with your clinical or medical director; don't forget you are covered by the Disability Discrimination Act. You may need to introduce some flexibility or alternative working practices into your schedule
Using disabled toilets makes it easier to cope with the unique problems of having a stoma
When travelling have plenty of stoma bags (for at least three days) in your hand luggage in case the airline loses your supply. Don't carry scissors (to cut the stoma flange to size) on to an aircraft. Don't forget that gases expand in an aircraft at altitude
Wardrobe adjustments may be necessary, especially if you develop a parastomal hernia. Buy a waist size too large, use braces rather than belts, and consider waistcoats or bulky sweaters
Medical care for doctors with illness can be a bit haphazard. Try to arrange routine follow up, rather than the ad hoc system that most of us use; as in, “Oh, give me a call if you've got any problems. You know where to find me”
My worst fear before returning to work was breaking some bad news to a relative when my stoma would decide to “work.” This hasn't happened so far, and my experience is that the “adrenaline” of the moment stops that from happening. With a year's experience I now have a few seconds warning and can muffle all but the loudest eruptions. A strategically placed folded handkerchief also acts as a silencer; another tip from my stoma therapist.
A colostomy is just one manifestation of illness
At home, my main concern would be how my two children, then aged 10 and five years, would react to the stoma. My son, the older one of the two, was fairly sanguine, but my daughter was very curious and still dissolves into peals of laughter whenever “George” makes his presence known.
It was actually the children who came up with the idea of naming the stoma, and I was very impressed with this unique thought. However, my stoma therapist informs me that it is her experience that most patients nickname their stoma. I'm sure this is an ideal mechanism to deal with what may be perceived as a scary enfant terrible.
Other practical points
Trousers can be problematic, especially as my stoma is on the waistline. Belts are now useless, and my mother has performed a sterling service in sewing buttons on to all of my trousers for braces. A waistcoat helps to hide the bulge as well as providing additional soundproofing. At work, scrub suits tend to be fairly voluminous anyway, so that's what I usually wear on the shop floor.
Adjusting to work was harder than I thought. Acute medicine had moved on even in the relatively short time I was on sick leave (two years), and reading the journals at home was not enough to keep up with developments, especially local ones within my own hospital and department.
Support from occupational health
One of the most important professional contacts in returning to work was with a consultant in occupational health. He dictated to my trust my pattern of return to work, which worked well; the pressure to return to full time with on-call as soon as possible was intense from managers, as was the suggestion that I took early retirement through ill health. Fortunately, seeing an occupational health specialist helped me to resist this. He will also be there for me as I contemplate a possible reversal in the future after my peritoneum has been repaired—more major surgery.
I am now more used to my colostomy and, despite the occasional bag detachment, feel that I have adjusted well. A colostomy is just one manifestation of illness; it may be a sternal scar from a cardiac bypass, a limb amputation, or an entirely hidden sign. As doctors we are not exempt from being ill, although we may think that we are. It is possible to live life and practise medicine, at least in some form, despite coincident medical problems. I think it makes us better doctors by doing so.
British Colostomy Association, 15 Station Road, Reading, Berks RG1 1LB Telephone: 01189 391 537 Website: [Link] Provides information and support, including chat forums and links to companies specialising in specialist clothing
The Ileostomy and Internal Pouch Support Group. A UK registered charity whose primary aim is to help people who have to undergo surgery which involves the removal of their colon (colectomy) and the creation of either an ileostomy or an ileo-anal pouch. Their site has lots of information: [Link]
International Ostomists Association. An association of ostomy associations, is committed to the improvement of the quality of life of ostomates and those with related surgeries, worldwide. It provides its member associations with information and management guidelines, helps to form new ostomy associations, and advocates on all related matters and policies: [Link]
Coloplast. A healthcare company responsible for the sales, marketing and distribution of Stoma Care, Wound Care and Continence Care products in the United Kingdom and Eire. Sends complementary copies of their journal Charter, especially for people with all kinds of stoma: [Link]
David Parkins consultant in emergency medicine
Wansbeck General Hospital, Ashington, Northumberland NE63 9JJ