A new acronym - SIBO!

 

SIBO – a new acronym!

Well, the dietician was worth every penny.  Like the doctor at the Colo-rectal department she thinks the battering my body has taken these last seven years (especially the last 19 months) has messed up my guts, causing these “IBS” type symptoms.  She thinks it is the mental stress as well as the physical stress plus all those drugs I took post-SCAD (rare type of heart attack) and post-Minimaze (surgical ablation for Afib) in the last 12 months.  She was interested to hear that despite all I’ve been through I rarely cry.  I explained it was because of the HHT (genetic blood vessel disorder) which means my nose usually bleeds profusely if I cry.

 Her pithy statement was “What doesn’t come out of your eyes, comes out of your bum”!!!!  In other words, if you don’t let the sorrow out in tears it will affect your digestive system – due to the gut-brain axis – where your brain and gut are closely related.

 However, she does not think I have IBS but rather SIBO – Small Intestinal Bacterial Overgrowth.  Basically, the bacteria that do great things in your large intestine have ‘migrated’ too far up the digestive tract and are now in the small intestine where they become hooligans and cause IBS-like symptoms.

 Significantly, as well as the bloating and pain, they also cause malabsorption of various substances which would explain the low Vitamin D plus my low iron despite supplements.  My iron saturation level is only 7% - according to the NHS website it should be 20-50%!  In blood tests over the previous two years, it has averaged 28%!! So, a quarter of that which probably explains why running is just getting harder and harder.

 Add in the nosebleeds and it is no wonder my iron levels are so low;  plus due to taking the anti-arrhythmia drug, Amiodarone on top of a previous malignant melanoma skin cancer, I have to be even more careful in the sun – meaning I am virtually always slathered in Factor 50 sun cream – hence no synthesising Vitamin D; plus I have eaten such a bad diet since January due to the doing the Fodmaps anti-IBS diet with its limited nuts, fruits, veg, pulses and lentils.  It’s like a Perfect Storm.  The dietician did say “I expect you feel like s**t” – I didn’t tell her I was still trying to run!

She also told me not to be so hard on myself… ahem.  I don’t think I am….

But I do wish I had paid to see her in the first place.  I have now taken a poo sample for a gut biome test and the next few days (while on the colonoscopy diet) will do the SIBO test too.  To be fair to myself, the Fodmaps diet is never supposed to be long-term and it should be done under the supervision of a dietician anyway – but the NHS just give you a leaflet and say eat like this!!

 

BUT, you know, it all comes back to the HHT. Flipping HHT! 

HHT makes one more susceptible to Afib and SCADs....

Afib means ablations, finally leading to the Minimaze and a spell in ICU and many drugs.....

SCAD means lots of drugs....

Lots of drugs means disruption of the gut which leads to SIBO – leading to malabsorption of vitamins and iron.  Not helped by narrow Fodmaps diet!

Plus, HHT nosebleeds means lack of iron too.  Indeed, a perfect storm!

 

More cheerfully, although we did not go away for May half-term, we did use the glorious weather to have lots of days out.  Luckily this included two days at the East Coast where is was ‘only’ 27˚ compared to 34˚ here!!

 

I then spent three days on the worse diet ever – I had to follow the three-day pre-colonoscopy diet so thought I might as well do my SIBO breath test at the same time.  That was 48 hours of only chicken, white fish, white rice or white bread.  Ugh!  In the end I thought I would gag.  Then a twelve-hour complete fast, followed by the three-hour long breathe test.  You had to puff into a tube every 20 minutes after drinking a sweet drink.   However, the connecting pipe broke straight away so OH had to hold if for me – let’s hope it worked! 

 I then had 4.5 hours to eat, before beginning the next fast for the colonoscopy. I was able to enhance my diets with extra food since the pre-colonoscopy diet is less strict – I had luxuries like the cheapest, pappiest white bread with butter on – it was delicious!!  Then I ran (!) and then I had lunch of pappy bread, butter and cheese.  I had to stop eating at 2 pm.  At 5pm you take a laxative which is, to put it delicately, FAST ACTING.  And very strong.  Basically, you are weeing from your bowel!!!  Next morning 6 am another dose -same outcome – visit toilet every 5-10 mins for about two hours!  Stop drinking anything at all at 9.30 am.

To the hospital for 1.30pm (on a Saturday) and still waiting at 3.30pm.  Interesting, throughout these three days I was never hungry, I just felt sick a lot.

Finally, I got my oesophagogastroduodenoscopy and a colonoscopy!  My life is SO exciting – also I think that former is the biggest word I have ever typed!  Now you know why they refer to it as an OGD – basically a camera down the throat to look at stomach and upper part of the small intestine (the duodenum).  No real problems found – just one HHT related sport but no bleeding.  Swallowing a camera is not great, but I was sedated and just remember gagging a bit…

Then straight on the other side so they could investigate from what we shall delicately call the ‘other end’.  That was ok except at the corners!  Turns out I have a long transverse colon!  It caused some problems getting the probe around the corners meaning I had to change position (side – front – back- side) to aid them, and the gas they put in is a bit uncomfortable.  I had cramps in the evening but managed to eat a delicious dinner of Cajun Chicken, homemade chips and grilled baby tomatoes.  Bliss!

 

So that’s over and done with – hurrah!  My 23^rd medical appointment of the year.  Sob!  Why me?!?!?!?

 

As for the running – it’s a disaster.  Before half-term I was managing a slow 2 min run (shuffle) and a 40-50 second walk.  This last week (even pre-fast) I could only just force myself to shuffle for 60-70 secs and needed a full minute to get over that.  On Friday it was even worse and I felt faint.  I decided this low iron (that 7%) is causing this and so I don’t think it is sensible to keep forcing myself to run in that condition.  Not least because it will be such a strain on my poor old heart.  So perhaps some Nordic walking and some rides on my electric bike (or even my ordinary bike, if it feels ok).  Frustrating, but there you are.

All the doctors keep saying the low iron is caused by the HHT nosebleeds but I disagree because I have had worse bleeds in the past and my Saturation level averaged 28% as I mentioned.  I think it is a combo of HHT  +  terribly low iron anti-FODMAP diet  +  poor absorption due to SIBO.

Be interesting to speak to the dietician and find out what the SIBO test (if it worked) and the gut biome test have to say.

Before that though, I am having an iron infusion - more excitement.  This is to give a quick boost to the iron levels without the stress on the gut.  And, anyway, my gut is not absorbing properly.  I’ve been feeling worse than ever – tired, pale, cold, faint and have basically stopped exercising, though I did teach my class yesterday.  I can’t wait to have the infusion!

 

It seems a real b*mmer to have the heart/Aflutter controlled only to be felled by this SIBO, low iron malarkey.  Sometimes I feel completely jinxed….

 

Hopefully, next time I will be brimming with iron and energy and running a lot better – we can but hope!!!!

 

 

 

 

Toodle-oh peeps.  I’ll try to be more cheerful next time ☹

Happy Heartbeats everyone.  Check back soon or subscribe to get a reminder when new Misery Memoir is published.