Category Archives: crohn’s diagnosis

azathioprine, bone marrow biopsy, calprotectin, cholecystectomy, crohn's, crohn's diagnosis, Crohn's Disease, crohn's remission, Crohns Disease and Low Platelet Count; Azathioprine, esophageal varices, gallstones, IBD, jaundice, low platelet count, MRI scan, portal hypertension, portal vein thrombosis, PVT, stricture, thrombocytopenia, varices

The Difficult Patient

I like to think that I’m a good patient. I very rarely forget to take my medication; I always turn up for appointments; I try to enter the consulting room with a positive attitude and clutching a list of questions.

…but I’m also a difficult patient. I think it’s true of any IBD patient that we are “difficult” because it is likely that on first presentation to our GP our symptoms could have a number of possible explanations. At least more doctors are becoming aware of IBD as an avenue for investigation. It took 8 months for my positive diagnosis of Crohn’s disease, via “nerves” and “spastic colon” along the way.

The difficulty continued. My platelet count dropped dramatically (thrombocytopenia). The most likely explanation? “It was the azathioprine.” So I stopped the azathioprine, my platelets showed no improvement and I ended up having surgery to remove a stricture.

Azathioprine is known to potentially affect the blood which is why we should have regular blood tests when taking it. Although my platelet count was around the 70 mark (usual range 150 – 400), I was asymptomatic. If I cut myself I didn’t bleed any more than usual and after several visits to see the haematologist it was decided to park the issue as it wasn’t affecting any other treatment. I had been in remission and Crohn’s drug free since surgery.

But what if the Crohn’s started to flare again and my gastro consultant decided the best treatment would be to restart the Aza? I put this to him and he agreed that we should un-park the question and try to find out whether the drug was to blame.

Off to see the haematologist again and two bone marrow biopsies later it was decided that Aza was the probably the guilty party, had attacked my bone marrow which in turn suppressed platelet production. (…..not everyone agrees)

The second “difficulty” was when I started vomiting blood, an incident that I have mentioned many times before. Into our local A&E and then admitted as an in-patient. The consultants there were expecting to find an ulcer. To confirm their suspicions they shoved a camera down my throat and were surprised to find esophageal varices. A simple-to-treat ulcer was actually something a lot more sinister.

One ultrasound scan later and it was identified as portal vein thrombosis. Time to pass me back into the care of my usual hospital. Treatment would involve both a hepatologist and haematologist. At my first meeting with the hepatologist I asked what could have caused the blood clot in my portal vein. He said that the most likely explanation was that it resulted from peritonitis brought on by a perforated bowel over 30 years previously. I have to admit I still struggle with this explanation. Why did it take 30 years to come to a head? Result – beta blockers and proton pump inhibitors.

The haematologist suggested that I started taking blood thinners to combat the threat of further blood clots. I really didn’t want to take any more medication than strictly necessary so we did a risk analysis and concluded that it was 50/50 for and against. Result – no warfarin. Another issue successfully parked.

Then came the jaundice as a result of gallstones. I met with upper GI surgeons at both my local and Kings College hospitals. The usual treatment would be to whip out my gallbladder using keyhole surgery but, of course, my case is not so simple. Previous laparotomies have left scar tissue and adhesions that would preclude a keyhole operation. Then an MRCP scan showed that the varices, that had grown down my throat, had also grown around my gallbladder.  Aaah!

What have we concluded? The choices are to operate now to prevent a problem in the future “that might never happen” or to postpone the decision and review again in 6 months time. He was minded to go with this second option. I wholeheartedly agreed with him.

…and finally there’s the little matter of conflicting test results. As it was the subject of my last post I don’t intend to repeat it here but it leaves me with questions. Is the “wait and watch, let’s park that issue” a valid strategy or best option in this instance. If I asked for further investigations to be done would I simply be using up valuable NHS resources carrying out tests that might make no difference to, or even worsen, my QOL? Would it even be clear which further tests could be carried out? As I said in that previous post, curiosity is getting the better of me but I’m not going to lose any sleep over it. That’s one of the advantages of writing a blog. You can get all your thoughts down in one place and then, you guessed it, park them.

Maybe there are no clear cut answers but I’m starting to feel that my “difficult patient” status can only get worse as the ageing process kicks in. Oh for a simple life.

crohn's diagnosis, Crohn's Disease, Croydon General Hospital, gastroenterology, hospital consultants, IBD, IBS, prednisolone, what happens in hospital stays in hospital

From Diagnosis to Surgery

In the dim and distant past I was becoming unwell, the sort of unwell that ended up in dashes to the bathroom. My GP quickly announced his verdict – I was suffering from “nerves”. He gave me a course of Nacton because, as we all know, the way to treat “nerves” is with a medication for peptic ulcers. Thank heavens for locums….

Within 18 months I was “enjoying” my first trip in an ambulance, compete with blue lights flashing and sirens wailing. Was I on my way to die? (Clearly not or you wouldn’t be reading this)

To fill in some of the details I’ll point you at the fuller version of the story. Clicking on the image below will open up a pdf file of my book/journal’s draft first chapter, and some early, rather pathetic, selfies…….

barium enema, crohn's, crohn's diagnosis, Crohn's Disease, Croydon General Hospital

It’s World IBD Day, again

It doesn’t seem a year ago when we were all wishing each other “Happy World IBD Day” (however inappropriate that may sound to non-IBDers).

To mark the day I’ve been inspired by last night’s (18th May) excellent #IBDHour chat very ably hosted by Richard Harris (@doobarz) and Shell Lawes (@shelllawes). The topic was the medications that we take or are offered for treating IBD. I’ve really taken to the format of TweetChats, the only downside being the constraint of trying to do justice to complex issues in just 140 characters. (That’s also an upside because you have to think more carefully about what you are typing)

One thing that was clear from last night is how differently we all react to the “common” drugs – salazopyrin, prednisolone, azathioprine, Remicade etc. There was some shock that I had prescribed steroids for twenty years but that wasn’t the whole story. The very first drug I was given was “Nacton”.  “Nacton?” Yes, a drug for peptic ulcers. Things could only get better…

I thought I might tell the story of my diagnosis and first surgery without the 140 character constraint. If you click on the image below it will open the first chapter from my book  – “Crohn’s Disease – Wrestling the Octopus”, as a pdf, in a new window. (It is still draft at this stage and the eagle eyed will notice some punctuation that needs changing)