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.