Answers

Why Does It Hurt?

View from the South Bank looking towards Blackfriars and St.Paul’s

Meet The Surgeon – Friday 8th March 2019 – a visit to St.Thomas’ to see the upper GI surgeon. A surprisingly lovely day and a chance to do some serious walking  along the South Bank of the River Thames.

Last time I saw him we discussed removing my gallbladder and had agreed to put it on hold until absolutely necessary. I had asked for this new appointment to discuss the pain I’ve been experiencing in my right hand side. I wondered if it was connected to my gallbladder (or scar tissue; or Crohns inflammation; or something else). He had a good prod around and was able to pinpoint the exact centre of the ache. (I knew he had found it as when he applied a fair degree of pressure, it hurt)

You have a small hernia. Usually we would offer you a short operation to repair it but given your history I doubt whether we should consider it“. The history he was referring to was the growth of new blood vessels in my abdomen due to PVT (Portal Vein Thrombosis). The vessels grew to relieve the pressure caused by the blocked portal vein.

I could now understand and visualise the pain. So much easier to deal with. Should I change my lifestyle? “No, carry on as before but if it gets worse then we will have to revisit the situation. You’ve got our contact number”. Should I consider wearing a support belt (as I had done when I had a stoma? “If you feel it helps“.

One Day My Prints Will Come

I mentioned that I had not yet seen the capsule endoscopy report from last November. He called it up on screen. No wonder they were having difficulties printing it. It comprised page after page of stills from the 12 hr video. There was however a summary page and I was surprised to find that it reported active inflammation in the proximal (top end of the) small bowel and a little further down as well. The far end (site of my anastomosis) was clear.

On the train home from London I thought more about why I was surprised and concluded that I really shouldn’t be.  Colonoscopies always showed no inflammation; upper GI endoscopies showed the same.  It was only the elevated calprotectin level that suggested anything was wrong. If that level wasn’t a false positive then the problem had to be somewhere between the duodenum and the terminal ileum. The last small bowel MRI scan had mentioned the possibility of inflammation. Despite this, physically, I felt nothing and still don’t. My digestive system is working as it should.

The Bleeding Clinic – Wednesday 13th March 2019 – off to Guy’s to see the haematologist in the Haemophilia Clinic……but my questions were all to do with general haematology.

My Hb has been consistently low for a while and I’ve been taking Ferrous Fumarate for over 5 years. My GP had then upped my dose to two tablets/day. I thought this was considered to be a short term measure. Would an iron infusion be more effective? The haematologist looked at my last blood test results. He agreed that the Hb was low and so were my white blood cells. Another bone marrow biopsy would be worthwhile to check for any changes since 2013.

I mentioned that there was a proposal that I should start Vedolizumab. Did my pre-existing conditions of thrombocytopenia (low platelets) and PVT (Portal Vein Thrombosis) need be considered? He consulted the online medication “bible” and said that Vedo was gut specific and should not interact with the other conditions.

He would book another appointment with the general Haematology clinic but in the meantime he would get me to provide blood and urine samples. I explained that the IBD Dept. required, and had already requested, specific blood tests. Would it be possible to get these done at the same time? Yes it would and so it was off to see the phlebotomist who removed nine full phials of blood (my previous record being seven).

…then off to visit the new public roof garden before getting lunch

View towards Canary Wharf from the Roof Garden at 120 Fenchurch Street

Next steps – off to see my gastroenterologist on 15th April

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