Bleeding and constant Defecation

I should have shares in toilet roll - the amount I use - averaging one roll a day and this doesn't include being at work! Even if moist ones are used at times, it doesn't negate how sore I can sometimes become and a bit of bleeding isn't uncommon on a bad day. It really is very miserable.

Here are my thoughts: https://youtu.be/8Sa8uKs4WUE

New MDT Meeting Plan

On the 7th March there was a further Multidisciplinary Team Meeting (MDT) to discuss my case. The upshot is that now they are going to do a diagnostic laparoscopy so that they can work out exactly what to do and make plans for a (second) surgery, where appropriate. This might involve gynaecologists and might also mean moving my entire treatment to Bristol, although I very much hope that doesn't happen now (following a phone call with one of my consultant's colleagues). This will be further discussed at my next Outpatient appointment on 7th April.

Here are my thoughts about this MDT meeting: https://youtu.be/XJHkUaab7oM

The Bladder and Obstructive Defecation

I had problems with a weak bladder ever since childhood, and would at times need to micturate at night up to six times. A cystoscopy in my late thirties showed a bladder of normal capacity, but urodynamic testing showed that I was never utilising my bladder capacity. Pelvic floor work through Pilates and physiotherapy have, over time, improved my bladder capacity. It appears that some patients with hypermobility will have weak bladders, whilst some, in fact, retain, owing to the stretchiness of the tissues [Norton et al., 1995; Tinkle, 2008].

My MRI Proctogram in 2015 in fact showed a cystocele (bladder prolapse) of some 3cm.  At this time the urogynaecologists didn't feel this needed treatment. I think that this is up for review this summer.

I often find I need to pass urine or micturate more frequently because my (loaded) rectum is placing more pressure on to my bladder. I do pass urine, but more often it is also because I haven't completely emptied my bowel. This can happen at night and causes my bladder to be more irritated if my bowel is still not completely empty at the end of the day. 

Here are my thoughts on bladders and obstructive defecation: https://youtu.be/DpOwSMEDC7s via @YouTube 

Use of Narrative Medicine (1)

Charon writes that she first used the term ‘narrative medicine’ in 2000. She writes “to refer to clinical practice fortified by narrative competence – the capacity to recognize, absorb, metabolize, interpret, and be moved by stories of illness. Simply, it is medicine practised by someone who knows what to do with stories” [Charon, 2007]. In science and medicine, there has been a more recent interest and attention paid to qualitative research including the narrative element, participant-observer studies, ethnographical interviews and focus groups [Charon, 2012]. Divinsky [2007] suggests that “in scientific terms – if we make sense of the world by recognizing patterns and thinking in categories – being able to narrate a coherent story is a healing experience” [Divinsky, 2007].

Indeed, there is something fundamentally human about telling and sharing stories, in order to gain insight and meaning into another person’s world. It is what we do every day. In narrative medicine we are suggesting that the medical professional tries to honor and understand the stories of those they are caring for [Nowaczyk, 2012]. This can also benefit the medical professional in that they have the ability to also share the story so that they can come to an agreed meaning with the patient [Charon, 2001; 2007; Nowaczyk, 2012]. This, in turn, leads to a deepening understanding and empathy by the medical professional of the patient’s plight, and improves patient-physician relationships [Charon, 2001]. Another advantage of narrative medicine for medical professionals is that it can help prevent burnout and retain empathy that may become somewhat diminished during their career [Divinsky, 2007].

Firstly it is essential that they gain the trust of the patient. This is fundamental to the beginning of the relationship, as is the crucial need to listen to the patient’s story. The need for narrative medicine in this patient cohort is absolutely vital. Time is paramount, which is a potential difficulty which somehow must be negated when one sees a patient with a chronic and long-term condition. Although this maybe a complication in terms of health economics, in the long-term it will prove to be far more beneficial. Of course in private practice this is much easier than with, for example, the constraints of the (UK) National Health Service.

Here, I talk about narrative medicine: https://www.youtube.com/watch?v=9zC0ckuT-q0&t=3s

Charon R. 2001. Narrative medicine – a model for empathy, reflection, profession and trust. JAMA 286: 1897-1902.

Charon R. 2007. What to do with stories – the sciences of narrative medicine. Can Fam Physician 53:1265-1267.

Charon R. 2012. At the membranes of care: stories in narrative medicine. Acad Medicine 87: 342-347.

Divinsky M. 2007. Stories for life. Canadian Family Physician. 53: 203-205.

Knight I. 2011. A Guide to living with hypermobility syndrome – bending without breaking. London: Singing Dragon Press.

Knight I. 2013. Managing Ehlers-Danlos type III hypermobility syndrome. London: Singing Dragon Press.

Nowaczyk M. 2012. Narrative medicine in clinical genetics practice. Am J Med Genet A 158: 1941-1947.