Do you mind an audience?

Gastro Appointment – Guy’s Hospital – 20th February 2017

I knew this was going to be an “interesting” consultation and it even started in a strange way. Would you expect to be greeted by a live violinist in the waiting room? Whilst I applaud the hospital for trying something different I’m not sure what it did for other patient’s stress levels. It didn’t help mine.

Having been waiting for over an hour a nurse appeared and announced the clinic was running 90 minutes late. Maybe she had made an earlier announcement but was drowned out by the violin. I knew I would be in for an even longer wait as I had requested to see my usual Consultant.

When I was finally shown into his room, he apologised for the delay and we started working through my list.

1 – Calprotectin result – previously 512. Had now risen to 895. I thought this was not unexpected as I was starting to feel a certain amount of pain when food passed across my anastomosis and through the transverse colon.

2 – Dependent upon the above – have you discussed further investigation? Barium enema? We had agreed before Christmas that, dependent upon the calprotectin result, further investigation could be needed. He favoured doing another colonoscopy.

3 – Run through the last follow-up letter with translation. What are implications of fistulas and adhesions?  We went through the letter and made sure I understood the medical terms. I was concerned that the mention of fistulas, strictures and adhesions meant only one thing – surgery. He responded that the possibility of fistulas was the most concerning; adhesions were to be expected but he was still was struggling to understand the apparent differences between the MRI and what he had physically seen during the colonoscopy. Strictures should have appeared on the camera.

I asked if it was possible for the Crohn’s to have moved from my small intestine to my colon. He said that it did not usually happen. A repeat colonoscopy would look for this. He asked if I minded having an audience as they were running a visit for ten overseas gastroenterologists to show how endoscopies were carried out at St.Thomas’. I really wasn’t fussed and it meant that I had the date set there and then. (Wonder if they will film it for YouTube. Would be taking selfies to another level).

4 – Plan for treatment – start Crohn’s medications. The most likely treatment would be one of the “MABs”. We discussed my previous experience with Infliximab and that was duly noted on my medical file. I wondered if I ended up needing regular infusions whether these could be carried out locally rather than needing a trip to London each time. He said they would encourage that but would still keep control of my case.

5 – Recent trip to A&E with jaundice. Violent shivering. Nausea. Turning yellow. Ultrasound scan 21st February. Need to make sure results are passed on. I quickly ran through my recent trip to our local A&E. He was surprised that during the whole incident I felt no pain. I mentioned I would be having an ultrasound scan the following day. (See below)

6 – Did East Surrey liaise with St. Thomas’? Did blood test results get passed over from East Surrey? There had been no contact with East Surrey. Something for me to chase up when I went there for the ultrasound.

7 – Hb looked low to me. He was not concerned about my Hb

8 – Do the treatment pathways change with age ie. over 60. Have any studies been done into the needs of the “older” patient? The main consideration would be the type of drugs used and their effect on an immune system that weakens with age.

9 – Opportunities for doing some more public speaking. Taking year off of work, maybe longer. There were plenty of opportunities. The danger would be becoming overused! I explained that I wanted to do something that would help the cause of Crohn’s patients.

10 – Not felt well for last 2 days. ED. Taking more Loperamide to try and combat. Have any patients reported that Loperamide from different manufacturers having varying levels of efficacy? I had been suffering bouts of having to rush off to the bathroom and it was the uncertaintity of the cause which I struggled with – virus, crohn’s, BAM or dodgy food. He suggested that I should go and see my GP to arrange a prescription for Questran (a bile acid sequestrant) so that it was available should I decide to start taking it. I had wondered if it was possible that different Loperamide makes could be causing my present problem? This rang a bell. He suggested I put it to the test by using the different makes in turn and noting the outcome.

I then went off to find the Endoscopy section to try and pick up the colonoscopy prep but would first need a time and date for the procedure. After a lot of ringing around the very tenacious nurse managed to get it all sorted out. Colonoscopy planned for 10:00am Saturday 11th March. The Endoscopy Unit were currently reviewing how the prep would be dispensed so I was given a prescription to take down to the Outpatient Pharmacy.

Roll on 11th March……

Ultrasound Scan – East Surrey Hospital – 21st February 2017

In complete contrast to yesterday’s delays, I arrived at the Imaging Unit early, waited five minutes and was then shown into the ultrasound suite.

They had the luxury of warmed lubricating gel! The scan took around 10 minutes during which I discussed with the sonographer what I would expect her to see – a large gallstone (first seen in 2014) and an enlarged spleen. At first the gallstone wasn’t apparent but when she applied the scanning head from a different position it appeared, except it was now a group of small stones. She wanted to see if they were mobile so got me to stand next to the US unit and then jump up and down. (I’m pleased they don’t get you to do this during a colonoscopy.) The stones had moved to the bottom of the gallbladder. The whole procedure was completed before my due appointment time.

I mentioned that I needed to get a copy of the report sent to my consultant at St.Thomas’. The sonographer asked me to return to waiting area and she would print off a copy of the report for me to take away.