3. My Blastocystis Symptoms

I am on my knees, elbows leaning on the bed.
Abdominal agony after a bowel movement

Pre Blasto History
….in more (lurid) detail

2013

I had recently been on a 5 day course of anti-bs for a urine infection. I was also on a long-term course of very low dose anti-bs for an eye condition.

My 2nd dog had passed away in the Oct ’13 – very, very stressful to be without dogs for the first time in 13 years – they were the most important beings in my life for such a long time and I had just begun a new ‘human’(!) relationship.

Through 2013-2014 I was doing a LOT more travelling up and down to London via Gatwick, taking on a new training role and sitting exams.  There was a lot going on and even though I was taking heavy duty probiotics, my gut biome was definitely ‘under fire’!

I therefore assumed that the ‘funny tummy’ syndrome was a result of all the above.  I assumed that it would settle when my life did.

I was wrong.

Initial Blasto Symptoms

November 2013 – March 2014 

I had begun to have digestive problems. After eating food or drinking fluids, I had a very distended upper abdomen, a weird swelling thing.

Imagine a woman who is 7 months pregnant.  My torso was so distended; my diaphragm was pushed upwards.  It would not contract downwards enough to induce air inwards, therefore I could not breathe OUT enough either. 
Extremely disconcerting to an otherwise fit and healthy person, who has exercised all her life. 
Wearing my rucksack on my front gave some relief, as it actively pulled my sternum downwards.
In my medical notes the GP has written, “feels a bit bloated”.

This was not right.
 
My tummy/lower abdomen was NOT bloated.  My whole ribcage was elevated and my ribs were flared wide.  It was quite different to an IBS swelling.  Now that I am well, I cannot reproduce that swelling – t’was weird indeed.  Whilst the inability to fully inhale and exhale was driving me crackers! 

I booked an appt with an exceptional pilates instructor, Caroline Toshak www.carolinetoshak.com  Doing the exercises did help a little with the flared ribs and elevated sternum up to a point but, after doing them, the need to move my bowels would become extremely urgent.  It was at this point that I felt the two symptoms were related.

Also, my stools had become very loose, a marked change to my ‘normal’.

April 29th 2014                            

After 8 weeks of diarrhoea, I thought it best to check in with the G.P I was advised to buy a bottle of Gaviscon.  I did say that I had had no acid reflux, no burning pain AT ALL, EVER, but he really did not seem that interested and sent me on my way.  (He had a young female trainee GP with him, and he definitely wanted to give the impression that ‘he knew best’, ‘I did not’ and there was really nothing much wrong)

I dutifully bought Gaviscon at the local chemist.  Although that was entertaining….

Pharmacy assistant – “so you have a burning sensation and acid reflux?
Me, “No, I have diarrhoea”
PA, “you don’t have any burning.. Any pain then??”
Me, “No”
PA, “um..I’m confused, you said you were to buy Gaviscon….?”
Me, “I know. I have had diarrhoea for 8 weeks”
PA, “…ohhh..kay… are you sure this is what your GP said?”
Me, “yes. I know. I’m confused as well, but hey ho.”

I took it.

It made no difference.

[ I have now learned that acid reflux/heartburn does not always cause the hot, burning feeling in the oesophagus that is depicted so often in the advertisements – the cartoon firemen hosing pink stuff to cool down the throat.  It can cause diarrhoea, but I believe that the burning is a more common symptom]

Wotevs.. at the time, I was disappointed that 8 weeks of the shits was not taken more seriously.

Things Get (a lot) Worse

May 2014

The diarrhoea was now severe and explosive, every time I ate anything – sorry to give you that image! – coupled with extreme pain ‘post-poo’.  And the distended upper abdomen was there all the time.  Although, thankfully, this was not painful.


Remember I said that my torso was synonymous to being pregnant?
Even my posture and gait were like that of a 7 month pregnant woman; purely due to the biomechanics of not being able to bend in the middle!  I had to maintain a straight upper body when sitting down, reaching behind me for the chair. I found myself rubbing the top of my ‘tummy’, trying to ‘soothe it’ downwards and I walked with the pregnant lady ‘waddle’.
(I hope that that does not cause any offence to those who are currently pregnant and waddling)

It was comical to say the least, but I felt like a right eejit.  (More on this problem in the post ‘Hunting for Blasto and ‘The Last Straw’ post which will posted soon!)

As a 40-something single, childless female, you can imagine what the medical profession thought of my description.

In my medical notes the GP has written, “patient feels she looks pregnant”.

I dunno, there is something about that phrase that I find insulting/wrong/patronising ….  How would a male patient have been treated had he been experiencing the same symptom?

But then, maybe I am just too sensitive…

Blasto Takes Hold

June – September 2014

By now it has been 5 months since I started having diarrhoea.  Every. Single. Day. The swelling in the upper abdomen now happens even after drinking a large glass of water. My weight has dropped from 9 stone 3 (probs a few pounds over my healthy weight!) to 8 stone and…

So. Back to the GP then.

Over the next few months, I have a series of blood tests and stool sample tests, all of which return negative. There may well be an NHS test for blasto, but I honestly don’t know. There was a complete lack of interest in anything related to parasites, unless one has recently travelled abroad, specifically to a developing country eg India or the Far East.

Once it was ascertained that I had not been abroad for years – even to humble ol’ Spain (!) the parasite idea was completely dismissed.
I am sent for a gallbladder scan, given painkillers and Buscopan. 

Just as an FYI……. JEEZUUUUZ, the Buscopan made things worse. This medication – as stated on the NHS website – “relieves stomach cramps by helping your gut to relax.  It acts quickly and cramps should ease within about 15mins.” 

My body whole-heartedly disagreed; the pain became unbearable. 

As I collected my poo for yet another test, I noticed some mashed potato in it. 
It had gone straight through without being digested at all.
I remember being quite in awe of that mashed potato.
“There you go. Take that!” as I walloped the potato into the sample pot “and tell me there is nothing wrong with my digestion…”

I had reduced my already small portion sizes, cut out spicy foods, and starches like potatoes, rice and, bloody hell don’t give me a banana!! My stomach swelled within 10 mins of eating one of those bad boys.
And raw foods, like salad, were a nightmare of pain.

The only food that I could eat relatively ‘safely’ was pure protein – a small piece of chicken or a couple of eggs. Them and only them.
My lowest point was only having a glass of soluble oats the entire day…
Things weren’t particularly great…..

By August – my peak business month – things are much, much worse. Bowel movements have become SUDDEN and
exhausting. IF I eat, 1 hour later it leaves my body and believe me, it leaves my body FAST. And it smells. It smells
bad. I can also see darker spots on the more formed stools, is that blood??

But by now, I’m scared. This is August for God’s sake; it began in March. Life has settled, yet my bowels have gotten worse. They have taken on a life of their own.

It’s like my tummy and I are having to occupy the same body but they ain’t pals.

.

I have an overwhelming awareness that my body is desperately trying to get rid of
SOMEthing,
ANYthing.
EVERYthing.

Even during my periods, tampons were not an option, as I end up bent over like a woman giving birth, bracing against the pain. (I’d only had period pain very, very rarely before)

My guts are on full-scale
ALERT and EVACUATE.
My entire body is now involved.

I now dread needing the loo. The tears start to form as I make my way to the bathroom.
(On a positive note… I used to not be able to poo in a public toilet…. Now? I couldn’t give a monkey’s stuff about
who’s outside or where I am! As long as it flushes, I’m fine)

Anyway. Where was I? Oh, yes, on a toilet…

My body wants shot of
Every
Bloody
Thing
That’s inside me
My whole body is SCREAMING as my bowels empty.

(now, excuse the crudeness but, bearing in mind the subject matter, I am assuming that the reader is ready for this)

My exhausted intestines wearily squeeze into action again. I swear I can feel every move of the peristalsis action as I become faint, close my eyes, feel the dizziness begin.

I grip the bathroom radiator with one hand and the sink with my other, as my body convulses and…

my arse explodes..

Time and time again, until I swear there surely can be nothing left inside me AT ALL.
I let me brain recover from the dizziness as I breathe hard, sweating a little. I sort myself out and leave the bathroom – to prepare myself for the next bit of ‘fun’.

It is AFTERwards that the pain is monumental.
Dear God in heaven the pain…
My intestines feel like the faeces have had tiny shards of glass, or teeny tiny knives, scraping the insides of the full 5 feet of the large intestines. I imagine I feel them bleeding.

I kneel on the bedroom floor, leaning on my bed, crying silent tears, waiting for the pain in my tummy to subside. I cannot breathe with the pain.
After 5-10mins, it does subside. I am done in. I crawl up onto my bed, curl up into a ball, only able to lie on my left side, and rest for the next half hour or so.

September 9th 2014

I am at the surgery for the Gallbladder scan results, which of course are negative. She is a pleasant G.P. and appears a tad more concerned than the others have been.
“in view of your multiple attendance, I think that we should look to referring you to Gastroenterology.”

NO SHIT! Ya think?!

“However, do bear in mind that it can take 12-16 weeks for a consultation,” she continued, “once they have decided what tests to do, you will be on a wait list for possibly another 8-12 weeks.”
I’m not sure how long I can carry on like this, especially as my job is not only very physical but, being self-employed and in ill health, is challenging. I do seem to be manging to stay at around 8stone, but I’m knackered.
And scared.
What if… you know… what if there is something in there that really shouldn’t be… like a tumour…
But SURELY all these tests would have shown something like that?….

A few weeks later friends and family urge me to go back to GP which I did, to request a referral to a private consultant.  If I pay £180 I can see someone in 2 days time, thereby knocking out at least the first 12-16 week wait.

There is no way I can pay for private tests, but I can afford  to pay for a private consultation to speed up the process. On the private hospital website, it says the consultant whom I have chosen ‘specialises in diarrhoeal disease’.  THAT’S the man for me says Jilly! 

It was slightly reminiscent of internet dating…

Sept 30th 2014 (yup, it’s still 2014, are you keeping up?)

I visit the GI consultant and he refers me for a colonoscopy and gastroscopy. As this will be done on the NHS I now just have to wait.

In the meantime, I had been put forward for an MRI scan of the abdomen.  It’s all GO GO GO now! Yeah!  Let’s get this bloody thing SORTED! Maybe THIS will shed some light on my issue!  Which would also mean that I do not have to go through having a camera up my arse… 

Now.  This visit to the hospital… well… in hindsight, this really was quite hilarious. 

However, if you have not already had enough for 1 blog, I sure as hell have, so I’ll open with MRI Day next time, in ‘Hunting For Blasto’, as I continue with my #blastoblog

I’m away for a wee lie down.

 
Medical Herbalist/ Nutrition Clare McQuade at www.deeatkinson.net 
Email – [email protected]
Nutritionist – my nutritionist is no longer working but I highly recommend Kate Swaine at www.edinburghclinicofnutrition.com
Private GP specialist – Dr. Econs www.burghwoodclinic.co.uk

Disclaimer:
By now, you know I am not a doctor, nutritionist, qualified gut specialist, nor cardiologist!
By staying on this website the reader fully accepts that this content cannot be used to replace qualified medical advice.
I can offer advice sessions on how to Be Your Best Advocate in a healthcare setting
I am a fully qualified & insured physical therapist and can offer musculoskeletal advice. For information on this subject see –http://www.jillmclagganmassage.com
I currently do not receive any commission from any therapist, clinic or company mentioned in this blog.
Should this change, the arrangement will highlighted.
This blog is a personal blog, written and edited by me, Jill McLaggan. All content is to inform and entertain. All opinions are my own.