Monday, May 22, 2017

Day before Surgery

I dutifully took my Picolax today - and it was quite a slow clear out - very slow, compared to the last time I did it. In fact, when I took the second sachet I almost wondered if it was ever going to work - but I think it has. I still think I am not completely cleared out, but I will be taking more laxatives tonight, so I hope that anything left will be gone.

I still feel absolutely shattered, had an ongoing bad headache, and generally bodily aches and pains. This morning, I needed a duvet over me whilst watching the TV and had put the heating on again despite the fact it is 23 degrees outside. I am clearly still not well.

I really hope that they find a reason for my problems, and that if they cannot deal with it tomorrow, that they get me back in again as soon as possible. I also sincerely hope they manage my pain post-surgery, as that has not been well-managed in the past.

I am now about to eat my last supper!

Here are my thoughts:

Sunday, May 21, 2017

Preparing for Picolax - my Pre--Surgery Bowel Cleanse

Tomorrow I will need to be doing a pre-surgery bowel cleanse using Picolax, which is a very vicious laxative. I have to take the first sachet at 8am and the second one tomorrow afternoon. For me the drug starts working within 90 minutes, after which I will be regularly chained to the toilet, so lots of toilet roll and moist toilet tissue needed, soothing cream, and also possibly continence pads to wear at night and on my way to hospital on the morning of 23rd May. Needless to say tomorrow will not be a particularly pleasant day. My diet is also very strict - starts with cornflakes and milk. Lunch will be boiled egg on white toast and supper.....clear jelly!!!

Small Intestinal Bacterial Overgrowth - SIBO

On Thursday 18th May, I saw my lovely and wonderful Neurogastro Prof  Aziz a the Royal London. After hearing what had been going on over the past 8 weeks or so and having seen my 'furry' tongue, Prof Aziz diagnosed me with Small Intestinal Bacterial Overgrowth, or SIBO. He said this would have been caused by my long-term constipation and structural defects - e.g. the prolapses and rectal Intussusseption. He didn't argue with me that the delay to my treatment has, I believe, almost certainly caused all of this. The delay in my diagnosis, in the belief I still had problems.

He put me on two very strong antibiotics with immediate effect one of which is Ciprofloxacin 500mg and also 500mg of Metromidazole. He felt my abdomen and said it was very tender. He could feel the hernia, but also said there was some sensitive fibrotic tissue as well as trigger points or Acute Cutaneous Nerve Entrapment Syndrome - ACNES.

Prof Aziz said that he would let Prof Knowles and Mr Giordano know the outcome of my appointment today, and I left and went to obtain the antibiotics to start straight away.

One of the biggest clues I had SIBO was in my breath and the fact that last month it had tasted of feces. Basically, in SIBO - bacteria that should only be in the colon migrate to the small intestine and breed there, where they shouldn't be. This makes me very frustrated, despite all my attempts with diet with Low FODMAP, low carbs/sugars, and still I get problems - but if nothing ever empties out of my colon - is it any wonder I have now ended up with this very miserable infection? I certainly feel and now look unwell. Hopefully the antibiotics will take effect before my surgery on Tuesday 23rd May.

Here are my thoughts:

Symptoms Increase systemically, and stopping work

By last Tuesday 16th May, in addition to my now 'usual' symptoms of obstructive defecation and constipation, bad breath and feeling bloated, I additionally woke to feeling in pain EVERYWHERE in my body and extremely fatigued. I had a headache and could barely function. Although I have EDS and fibromyalgia and therefore used to chronic pain, my pain (apart from my shoulders) had been remarkably well controlled over recent months. Fatigue episodes had been minimal. This felt like flu. I felt very anxious and could hardly function at work. This led me to write an email to my excellent and really wonderful Neurogastroenterologist, Prof Aziz, at the Royal London, asking for more help.


In the week running up to this new and long list of crescendo of symptoms, I made a decision that I was stopping all work at the end of the week, and would in fact decide to stop my work as a Bowen Therapist for the rest of the year. For me, work has always been therapeutic and I have always loved my work. I finally felt  I could no longer continue to be effective given my present state of ill-health. Quite how six months off materialized was a strong, and more universal message to myself. I will lose a lot - in terms of my clinic room rent etc, as well as losing lots of clients - but I have to look after myself. My clients have all been fantastically supportive, and I feel very lucky that they have been so understanding.

It is the first time I have really stopped work completely for my health for many years, and I do have plans to write - another book - but also use the time to get myself truly well, whilst reconnecting with friends and family as  I have become increasingly isolated of late, because of the misery of my guts.

Thursday, May 4, 2017

Surgery Date!

Today I finally got my surgery date - Tuesday 23rd May at the Royal London Hospital. It will be with both my surgeons - Mr Giordano and Prof Knowles. Here are my thoughts:

At the moment it can't come soon enough. I am still feeling quite constipated ongoing despite the number of laxatives I am taking. I am not going out, I feel very low - I really don't want to do anything, which is not typical of me.

I am going to document everything - from my pre-op assessment through to going down to theatre - if they'll let me and then my recovery which will start in the High Dependency Unit. If it is an open surgery, and because of the complexity of my underlying medical conditions it could be a 10-14 day admission. Lots to sort out before then - including work, locum cover and many other things.

Belated A&E Visit Report

Two weeks ago, and following seeing my GP, I ended up going to the Royal London A&E. I could have gone to a nearer A&E, but my GP had suggested I went there because all my other doctors are based there. In the end, what prompted me to go was that my bowel had become completely distended, and I looked about 7 months pregnant. My breath was tasting of faeces, and despite starting antibiotics for suspected small intestine overgrowth, I had become worse. It was perhaps unfortunate I went to A&E in the evening, but had my stomach not suddenly 'exploded' - I would have waited until the next day. I got there about 9pm and it was quite busy - not that A&E isn't ever not really busy. I was sent to Majors/A&E and given blood tests which showed no infection, but a plain abdominal x-ray showed my colon was completely loaded, even though my GP had said it was fine the day before. The doctors couldn't understand why my breath was so bad - although I could - if my colon was backed up, I was loaded with toxins and poison, and literally 'full of poo.' The A&E doctor had a surgeon look at my hernia as it was painful. He did some moves on it and popped it back in, which helped with pain. The next thing was to decide how to get my bowels moving again. They were suggesting Enemas, but they haven't been helpful in the past. Neither has Movicol or Fibrogel. In the end, I suggested Picolax, which is a very aggressive laxative used to cleanse the bowel pre-surgery. This was a rather unorthodox treatment, but given the complexity of my case and the underlying rectal intussusception they agreed, and since they weren't going to admit me for any reason, discharged me with Picolax and I finally got home at 4am,

I took the first sachet of Picolax at 8am, and the second one at 2pm. I spent a long day on the toilet - the drug kicks in within 90 minutes of taking it, but the clear-out continued into the night and next day. Within two days my breath finally started to improve again, but I had to increase my laxatives ever since, finally restarting Prucalopride last week.

Friday, April 28, 2017

Ongoing Constipation and still no surgery date

At the moment, the only person giving me any support whatsoever is Professor Aziz, my Neurogastroenterologist at the Royal London. He has suggested that I could try adding Prucalopride to my laxatives and Sodium Docosyte. I asked my GP to prescribe this on Tuesday, which he did at the lower dose of 1mg. He wasn't very keen because it is a very expensive drug. To start with, nothing happened, but this morning my bowels have definitely been moving again, thank goodness. My GP would not agree to speaking to my consultants or chasing up the two consultants involved in my case I am extremely frustrated. My GP can see I am in a really bad way. He tried to organize a scan for my hernia - but there is no need!! My consultants know about this! What I badly need is my surgery date. It is having a profoundly negative impact on my mood, and is causing me stress and anxiety because I am self-employed and need to give my clients notice of my absence and arrange suitable locum referral etc. Today, I am extremely fatigued, and could do with a day in bed. Thank goodness it is Friday, and a long weekend at that.

Lack of Social Life

My social life has really suffered because of my health condition(s) - especially obstructive defecation. Basically, because when I defecate, I only pass very small amounts at  a time, as soon as I eat (as is with the case of many people), I then want to defecate more and this can happen every half an hour or so and isn't always very quick. It makes me feel very antisocial when I need the bathroom all the time during a meal out, so this has sometimes made me stay at home. This is really sad because I have found meals out something I enjoy doing. Hopefully when I have had my surgery, I will feel better about this again.

Tuesday, April 18, 2017

GP Visit - on Antibiotics and - strange lump!

For the past few days I have become increasingly constipated, had very bad breath and a brown tongue (!) and then pain deep in my belly button and below which reminded me very much of diverticulitis. Whilst I thought that they removed diverticular disease from my sigmoid colon when I had my anterior resection in 2016, it would certainly seem that I have similar symptoms. Yesterday I was feeling really rotten and was meeting my mum after a concert at lunchtime, only I just couldn't eat. I get sick and full quickly. I had more pain and had an early night and rested.

Although this morning I seemed to feel better, my gut definitely isn't and  I am only doing 'rabbit droppings.' I was very lucky and managed to see my GP. He prescribed antibiotics based on the diverticulitis theory, coupled with what my Gastro Professor had communicated - that I may have some intestinal bacterial overgrowth. I asked my GP to feel my tummy, which he did. He reported that it still felt nice and soft, which was a good thing, and, couldn't feel any stool, particularly, of fecal loading - but he did feel the strange lump I had been feeling, about an inch below my umbilicus. I don't know what this is, and neither does he, although I do have a known hernia. He has said to see how I feel over the next 2 days, but that if I am no better, not to wait around and go to the Royal London. I am going to chase my surgery date up yet again, because my body might not manage the wait!

Saturday, April 15, 2017

Nasty Bacterial Overgrowth

For the last few days I have felt even worse than normal. I have had deep corkscrew pain in my umbilical area (I do also have a hernia there). My guts have been even worse than normal in terms of evacuation and I was clearly completely constipated for at least 2 days - and even though I took Dococyte last night and 3 laxatives I am not emptying at all well. In addition I have had terrible breath that literally tastes like poo. I had a dental check up and clean in the week, so know that my oral health is OK, and that is not the cause of my bad breath. I managed to email my Gastro Consultant and he asked if I had been taking Biokalt live bacteria, which I have been doing for months. He also suggested to try the Low FODMAP diet for a while, and if that didn't work that I might well need some antibiotics. On reminding myself of the Low FODMAP foods it is possible I have been consuming far too much lactose lately - although this has not been a problem group of foods before. I had mushrooms, mangetout and apples and coleslaw in the week a few times - so I can knock those out. I will be eating chicken, sweet potato and courgette for supper. This is all plain and settling, and I have some suitable fruit lined up. Debatable about adding cream or eating trifle....! I might wait and finish dairy products and then do a separate trial of lactose free for a whole week. I think I do actually need antibiotics given the taste in my mouth - all the bacteria must be having a field day since I am definitely not emptying my bowels at all well - worse than normal. Let's see if I do need antibiotics. Luckily I haven't had any for ages so I don't feel too bad about taking some. I have to say I really feel at the end of my tether. Here is a selfie of my tongue:

Living in the toilet!

Unfortunately I now feel that the toilet/bathroom has become my second home. I seem to live 'on the throne!' - I must be keeping Andrex in business - I go through at least one loo roll per day. It is a very miserable existence and I have had a history of anal fissures and fistulas, which is hardly a surprise given my present situation. I wouldn't be at all surprised if I don't have another fissure brewing. It is all so miserable, and I feel so sore and dirty because of this condition. My life seems governed by this condition as it has declined over the last nine months since the surgery which initially was so amazing. I wish I could reclaim my life.

Wednesday, April 12, 2017

Feeling completely blocked up!

I just feel massive, fat, completely blocked up. It is so miserable having Obstructive Defecation.

Friday, April 7, 2017

Access to toilets!

One of the most distressing things about obstructive defecation is endless toilet trips - even occasionally at night. I don't know what my record is - but probably about 20 times in one day.

It's all very well and good when I'm at home - it is when I'm out and about that the fun beings, and there are not nearly enough of these - the humble public toilet. I think it is outrageous that human beings should have to pay to use a toilet for what is a normal bodily process. What has gone wrong for me are the endless attempts at evacuating everything.

After eating a lovely meal out with a friend, she and I went shopping, but because my bowels were loaded again (having eaten), I found it difficult to continue shopping and there was no way I was going to try anything on. I had to come home for private use of my own home toilet. By the way - I had already used 3 hospital toilets today, one in M&S, three times at the restaurant and then felt I couldn't face a further toilet battle. Enough was enough. However, I still think the use of a toilet should be a a free human right. 

Out-Patient Appointment Update

I saw Prof Knowles today. I am finally finding out why it is proving more challenging to get me a date for my surgery, but I do know that Mr Giordano has to be there, and be the lead surgeon because he performed my anterior resection last January, and will know how I was left (inside) when he last operated. It all seems rather uncertain. One thing I really didn't realise was that Mr Giordano would have used mesh to revise and to hold my organs in-situ. It maybe quite simple, and that I need a few extra stitches to 'tack' the mesh more firmly, or it could be a lot more complex involving an open surgery. At the moment the date might be 23rd May or 20th June. In the first instance this will be a more diagnostic laparoscopy, and if the problem appears simple, a few extra stitches. If, however, the problem is more complicated, it will involve an open surgery and much more detailed repair. Whether or not this would be done at a later date was not made fully clear - but implied. I supposed they would need a longer operating slot for a much bigger surgery. I also forgot to remind them they need to repair my umbilical hernia, so I hope they don't forget! 

I left really not feeling a great deal clearer than what I had been told by a research fellow by phone a couple of days ago. It still feels very uncertain and meaning I am not sure how long I will be in hospital - whether for just a short stay for diagnostic procedure - or a longer treatment. It is still hard to know what to do for work, plus we still need to wait for Mr Giordano to be available, as he is rather critical to my case! 

Here are my thoughts:

Thursday, March 23, 2017

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:

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:

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: 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:

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.