Many stories came out of my year in Cambodia. I feel particularly close to one of my patients and I am not sure I ever fully told (my part of) her story. At 25yo this young woman who I will give the pseudonym of Phan, was admitted to our ward weighing 21kg. Her father carried her into the ward and placed her on the bed. I had never seen anyone look so malnourished and frail. During the admission process we needed to weigh her and she said she would be able to stand on the scales for us. She misjudged herself, her legs gave way under her and she fell to her knees. Her father picked her up and we weighed her in his arms, with his weight then subtracted from the total.
A Cham (Muslim) family from an impoverished rural riverside village, she was hospitalised with us for over two months, during which time she constantly had family present and caring for her – a cousin, a sister, her mother and various others.
Two years prior she had been suffering with abdominal swelling and pain for years and after years of suffering her family somehow managed to obtain the funds to take her to Phnom Penh for expert opinion. Unfortunately, in Phnom Penh it was initially decided that she had appendicitis, which is an acute condition that cannot last for years and should have clearly been a misdiagnosis. Surgeons operated to remove her appendix and during the operation discovered swollen lymph nodes which they diagnosed as cancerous. They excised some of the nodes by a bowel resection, forming a stoma where the newly created end of her bowel now opens out onto the skin of her abdomen and requires a plastic bag to cover and catch the faeces. They also told her that they had not been able to remove all of the cancerous lesions and that they could not tell her how much time she had left to live but that the cancer would ultimately be terminal. In a country where chemotherapy and radiotherapy do not exist – the wealthy travel to other countries for such luxuries – this was the best they could do.
One of the risks with abdominal surgery is the formation of adhesions, or scar tissue which sticks internal abdominal tissues and organs to each other, which are normally soft, slippery and not attached to each other. Adhesions can be asymptomatic or they can cause pain and intestinal obstruction which requires further surgery, which in turn risks the formation of more adhesions. Phan developed painful adhesions and was operated on twice more in the following months. These operations resulted in the formation of a fistula between her intestine and the skin of her abdomen on the opposite side of the deliberately-formed stoma. She now has two permanent openings on her abdomen which ooze faeces. One, the stoma, has a plastic bag attached to catch the faeces; the other is treated like a wound and dressed multiple times per day depending on how much faecal ooze occurs. The skin around both sites is raw and inflamed due to the constant faecal ooze.
Her treatment in Phnom Penh was very poorly documented and our medical team had to make a lot of educated guesses about her condition. To cut a long story short, my personal conclusion is that she (obviously) did not have appendicitis and that the visible lymphomas which, in the face of no real diagnostic tests, were determined to be cancerous, were in fact tuberculous. That is, all along she actually had abdominal Tuberculosis which would have been cured by a standard six months of anti-TB medications. Unfortunately it is very difficult, without appropriate testing, to differentiate between abdominal lymphadenopathy which is caused by abdominal Tuberculosis and that which is caused by lymphoma (cancer). In countries with high TB prevalence and poor resources for diagnostic testing, this is an easy mistake to make, although her age and the prevalence of TB in her population may have seen another medical team make the right educated guess about her diagnosis.
The abdominal surgeries which all could have been avoided, have resulted in a state of malabsorption where she is unable to absorb enough nutrients before the digestive process ends at the opening of either her fistula or her stoma. This leaves her in a constant state of malnutrition, and her weight continues – years later – to hover in the region of 21kg to 22kg. Had she been born in a wealthy country, she would receive parenteral nutrition into her veins which would allow her digestive tract a chance to rest and heal and her prognosis would be very positive. Unfortunately her only option is to eat and she is receiving extra food and therapeutic food supplements to try and assist her nutritional status, but it is proving ineffective due to her clinical state.
The malabsorption has also meant that, finally commenced on TB treatment, she does not absorb the TB medications well. After a time on TB treatment, tests returned that she had MDRTB (multi drug resistant TB), which the doctors have theorised is likely caused by her inability to absorb all of the anti-TB molecules properly. This poor absorption exposes the TB bacteria in her system to small doses of anti-TB molecules which allow it to produce enzymes which obstruct the anti-TB properties of these molecules.
It is unbelievable that despite her precarious physical condition, having been told that she has an incurable cancer and will die, she continues to survive. But she does and it has been an honour and a privilege to know her. Earlier this year her husband divorced her and remarried. They share custody of a 3yo son who her parents care for when he is at their home. The below photographs show some of the children at her home and her mother caring for her at home.
I made a number of visits to her home before she was discharged (with the DRTB Nurse who identified a Home Based Care Nurse to administer her daily Direct Observed Therapy) and I have visited her a few times since she returned home. Their living conditions are less than basic. Water supply is the muddy Mekong, the shores of which their elevated wooden home sits on. During the Wet Season the Mekong rises and flows onto the land, at which time they can only leave home by stepping out of the door and into a wooden boat.
We had to work out the best dressing and stoma care materials for her and at one point an expatriate clinician based in Phnom Penh suggested we provide reusable materials which could be washed, until I explained their water supply to him. Very basic things like this were eye opening to my first world brain, which has never had to imagine the dangers associated with dirty water supply.
I have maintained contact with her and am hoping to return to Cambodia in January with supplies that might help improve her situation. She spends her days lying on the wooden floor of their home, surrounded by extended family including many children, receiving an impressive level of care given the circumstances that they live in. I have contacted a stoma care nurse in Sydney who is trying to assist me in obtaining appropriate colostomy bag supplies, but this is not an easy task because Australian standard supplies, which are free to Australian citizens, are very expensive to purchase privately. We are waiting on further contact with a company who have begun supplying more basic colostomy bags at a fraction of the cost, to poor nations. However they have various conditions attached to supply, such as a contact person in the country, someone responsible for teaching the carers how to use the bags appropriately, etc. With mail unreliable and expensive in the best of circumstances, her very remote location which makes receiving mail impossible, and my unknown duration of stay, these are not easy things to put in place.
Yesterday I gave a brief presentation to some family members about my year away and a photograph of this beautiful young woman elicited questions about her prognosis. This prompted me to write about her this morning. I believe that her prognosis is better than she has been told, in that she probably doesn’t have terminal cancer. However, she is living precariously in a state of extreme malnutrition, in very poor living conditions which place her at risk of exposure to infections which, in her state of chronic ill health, make her very vulnerable to disease and death. The MDRTB she is being treated for may in fact be her demise. Her quality of life is also extremely low, relying as she does on family members for everything.
A bright, beautiful, friendly and intelligent girl who enjoys reading and practising her English, she is a perfect example of the potential that our world misses out on due to material deprivations in substantial expanses across the globe. Our collective impotence at making the world an equitable place for all ultimately detriments us all.
One thought on “The Story of One Patient”
If (when) I start to feel sorry for myself over the sort of trivia that can cause stress, I think about stories such as this one and realise how very fortunate I am. This poor soul spends her life in such a circumstance one can only imagine. You are doing your very best to try and help Helen.