Firstly, it makes me think more deeply about the issues of confronting a chronic illness. Secondly (not sure how to get this across properly) I get to "report" on the various tests, procedures and experiences I'm going though which makes them almost seem one step removed, as if they are happening to someone else. Rather than worrying about a new test, like a liver biopsy, I find myself wondering the best way to explain and demystify the experience to others. It has become part of my coping strategy.
So the chapters continue.
I'm hoping for a less hectic 2013, healthwise, and being able to get back to normal life following the last six months which started with an emergency admission to hospital followed by a seemingly endless round of tests and procedures to get to the bottom of, and treat, the Portal Vein Thrombosis and associated esophageal varices. (The most likely explanation for the PVT is as a result of peritonitis in 1979). I have two more appointments set - 21st January with the liver specialist, to get the results of the recent liver biopsy, and then 29th January to see the Haematologist to find out if and when I start Warfarin, a blood thinner, to try and prevent another thrombosis. The biopsy should show exactly what state my liver is in and how much stiffening is present. From that I'm hoping we will be able to set the course for future treatment. What I want to avoid is even more tests and want to get some certainty into my life.
I had done some research into PVT (on the internet) and in most of the articles the prognosis was not good. The majority of them related to patients where the PVT has been brought on by cirrhosis from heavy drinking and this makes things far worse. In this instance I'm working on the principle that a state of semi- ignorance is the best policy until I see the consultant and ask him my long list of questions.
If you're reading this as a Crohnie you'll know that you can never say your Crohn's has gone for good. The best you can hope for is a long, uncomplicated remission. The colonoscopy carried out just before Christmas showed no signs of Crohn's in my lower intestine or at the site of my anastomosis. My GI consultant didn't want to see me again for six months unless something goes wrong. I don't believe that I'm in 100% remission as I am getting a few niggly pains and the state of my digestive system seems to be variable. I have got a fair amount of energy and my weight is increasing. In fact I'd say at 90kg I'm about 5kg more than I feel the most comfortable at so I must do something to address this. I had decided that after returning to work post Christmas I would try and get out for at least a two mile lunchtime walk whenever I was in London. Unfortunately the weather had been a bit grim so I didn't make it out every day. More of that later.
Given this relatively quiet patch in my Life of Crohn's it seemed like a good time to clear out my drug's cupboard of all the tablets that I'm unlikely to ever take again or that are outside their use by dates - Metronidazole, Adcal, Prednisolone, Azathioprine. I took most of them down to my local chemist for disposal except for twenty or so bottles of Fortisip, also well outside their use by date, which I poured down the sink. Whilst I haven't reclaimed my life from Crohn's, I have reclaimed the cupboard above the fridge!
Aims for 2013 -
No unplanned visits to hospital
Return to working 5 days per week - depends upon my clients having sufficient work
Reduce my stress levels to the absolute minimum, gauged by the number of unbitten fingernails, currently 80% intact.
A Little Background - Let's start by winding the clock back to the beginning of June 2012 when I was an emergency admission to East Surrey Hospital (see the chapter - "Bollocks! Back in hospital again").
Having looked at my symptoms and test results one of the consultants started mentioning conditions I'd never heard of before, he singled one out - Primary Sclerosing Cholangitis. When I said that I'd better look it up on the internet one of the accompanying junior doctors said probably best not to. So, of course, I did and it looked serious and scary. The consultant also mentioned liver transplant. This has influenced the way I've dealt with this problem. (The PSC was subsequently downgraded, if that's the right term, to PVT).
Usually I like to be positive and informed about my health but in this instance I chose a different approach. I don't know much about the liver, the biliary system and related ailments so could chose the "educated ostrich approach" ie. making a positive choice to bury one's head in the sand, as a coping strategy, but knowing that, at some defined point in the future, it would be necessary to come to terms with the diagnosis. That point being getting the results of the biopsy.
Low stress is best - One thing that seems to help with Crohn's is keeping one's stress levels as low as possible. By using my ostrich approach I've been able to keep any thoughts about what the biopsy might show, and it's subsequent implications, to the back of my mind. There have been a few decisions I've let it influence, the main one being holding off changing my car as I don't want to end up with something that won't get used often if I have to be laid up for any length of time. You'll see that maybe I should have gone ahead anyway.
Thursday 16th January 2013 - I'm not a great lover of snow if I have to drive anywhere. The last couple of years I've managed to avoid it. In 2010 I was recovering from the ileostomy. Last year the snow didn't arrive until early February, only lasted a few days and caused little disruption. I'm always filled with a little trepidation on what road conditions might be like, even in a 4 wheel drive. This wasn't helped today by the car deciding it didn't like going up hills. I rang the garage and got it booked in for the earliest slot which was Monday. I then checked my diary and realised I was due at St.Thomas' that day. So back onto the garage to cancel Monday. This did mean that I would have to keep my fingers crossed that the car would get me back home tonight and down to the station on Monday morning. Combined with the snow - not good for stress levels.
Monday 21st January 2013 - all Sunday there had been a very fine, powdery snow falling. It didn't look much but by the time it had finished in late afternoon it had built up a fair layer onto already frozen surfaces. I decided it would be best to attempt the main road to the station in the morning but would need to allow extra time. Also I didn't want to risk breaking down on a narrow, twisty, slippery country lane.
I woke early on Monday and then couldn't get back to sleep so decided to get up even earlier than planned. The car got me to the station OK. There were a few times I thought it was going to stop. The train arrived late, but only by two minutes and we got up to London virtually on time. I did some work until it was ready to set off for St.Thomas'. My colleagues wished me good luck with the outcome.
I caught the Tube down to Westminster and walked across the bridge. I was surprised that the pavements had not been cleared of snow and ice and were quite treacherous. From the bridge there was a reminder of the tragic accident last week when a helicopter hit the jib of the tower crane being used to build a high rise block of flats. A huge mobile crane had been brought in to recover sections of the damaged crane.
|The mobile crane in the distance is taking down the damaged tower crane|
Running late is the price you pay for consultants that take their time with each patient. I think it is worth the wait but wish the screens didn't show that clinics were running within 30 minutes of appointment times when clearly they weren't. Once I was in with the consultant he explained that, due to the bad weather, everyone had turned up early. That suggests you get seen in the order you arrive in Outpatients, not by time of your appointment.
He asked when I had had the liver biopsy so he could call up the results on screen. At first he couldn't find them but eventually they appeared. I was watching his reaction as he read through the report and he was looking concerned. Not a good start but maybe he plays poker.
He told me that the biopsy showed that I had mild biliary system abnomalities. This didn't sound too bad, in fact it sounded a lot better than I was expecting (which was cirrhosis) and I rather lost focus on the list of questions I had with me as many of them became irrelevant. He explained that the likely cause was as a side effect of the Crohn's and that it was quite commonly observed in patients with IBD. It had no connection with the portal vein thrombosis that had caused the varices in my esophagus.
There was a further test that could be carried out to look more precisely at the biliary damage, an ERCP (Endoscopic retrograde cholangiopancreatography), but this was an invasive test in which marker dyes were injected into the biliary ducts. The concern with this type of test was the risk of introducing an infection into the system that was then difficult to treat. He did however want to do an MRCP (Magnetic resonance cholangiopancreatography - a specialised MRI scan) just to "baseline" my current condition for comparing future scans with. He would see me once more to go through the results of the scan and then discharge me back to the care of my GI.
Wow! I definitely wasn't expecting that. Quick, think of some relevant questions.
Question 1 - how will I know if something is going wrong. Answer - you'll go yellow and itch a lot.
Question 2 - should I keep taking the Propranolol (the beta blocker I've been taking to keep my blood pressure low). Answer - if your not experiencing any side effects then keep on it.
Question 3 - I'm seeing the haematologist next week and she wants to start me on warfarin. We've been holding off until the results of the liver biopsy are available in case further, invasive tests were needed for which thinned blood would be a risk. Answer - I'm not proposing any further tests that would preclude you from having warfarin.
Question 4 - should I have regular upper GI endoscopies to check for varices. Answer - yes, every 12 months.
Once I'd got home I thought of a couple more questions that I meant to ask - does the result of the biopsy tie in with the Fibroscan reading of 7.2 from last November and can I drink alcohol again. I'll put them in an email.
If you've read any of my other posts you'll know I love walking around London but I don't recall every being up there with so much snow still around.
The request for the MRCP had gone in and a follow-up appointment with the liver specialist was planned for three months time. As I mentioned above I would be seeing the haematologist next week and expected to start taking Warfarin. It seems strange that it's necessary given that my platelets are at such a low level (just over the 60 mark).
...and get the car sorted out
I thought I'd better find out a bit more about MRCP and this is what the Patient.co.uk website shows:
"What is MRCP?
MRCP stands for magnetic resonance cholangiopancreatography. MRCP is a type of magnetic resonance imaging and produces detailed images of the liver, gallbladder, bile ducts, pancreas and pancreatic duct.
What is MRCP used for?
The uses of MRCP include:
Checking the liver, bile ducts, gallbladder and pancreas for gallstones, tumours, infection or inflammation.
Investigating the cause of pancreatitis (inflammation of the pancreas).
Investigating unexplained abdominal pain.
Used as a less invasive alternative to endoscopic retrograde cholangiopancreatography (ERCP)."
Thursday 24th January 2013 - arrived home from work to find the follow-up letter from Monday's appointment waiting for me. Reading the bullet points at the top it all looks rather grim but gets better as it goes on.
For completeness, here's the text of the letter -
Previous Crohn's operation with intra-abdominal sepsis
Variceal haemorrhage (banded)
Mild elevation of ALT
Liver biopsy - mild cholangitic and sinusoidal ectatic components
In the event, he was able to have a percutaneous rather than a trans-jugular procedure which probably resulted in a better specimen. Review demonstrates some mild cholangitic changes which could represent early primary sclerosing cholangitis, but may be nothing. The mild sinusoidal ectasia could relate to this or his splenic vein block.
I have arranged an MRCP really as a baseline. I do not expect to see anything very much on it and I suspect that at his next appointment I will be able to discharge him back to his GI consultant's care.
As far as anti-coagulation is concerned, there is no particular contra-indication to this. His varices have been obliterated but I think he should continue on propranolol."
I couldn't work out what "sinusoidal ectatic components" were, and yes I did try looking it up on the internet. It looks like I may have the start of PSC so the consultant I saw during my stay in East Surrey Hospital was right to mention it.
I'm wondering how long it will take for the MRCP appointment to come through. If all goes to plan I'll only need one further follow-up appointment and then this particular chapter in my medical history can be closed down for the time being.
Friday 25th January 2013 - no work today. Last night I was getting quite a bad pain right around my midriff. Really quite worrying. Feel asleep on the sofa and woke up at 3:00am. My wife didn't like to disturb me as I looked peaceful. Still had the pain at 3:00am so went to bed and luckily it had passed by the time I got up at 7:30am. I am certainly quite tender in my abdomen but it's not bad enough to have to ring the IBD Nurses at St.Thomas'. I've come up with a number of possible explanations :
It's a Crohn's flare-up
I've been wearing my belt too tight
There's a virus going round
I've been eating too much - I'm 5kg more than I really want to be
I ate something that disagreed with me
I've been sitting twisted up
I often have this dilemma. I'm hoping it's not the first one. It seems to have passed for the time being so back to having a fairly lazy day.
I just needed to drop the consultant an email with the questions I should have asked -
1) Do the findings of the biopsy match with the Fibroscan reading of 7.2 back in November?
2) Can I stop taking the Omeprazole?
3) When I was admitted to East Surrey Hospital back in June last year they told me to avoid drinking any alcohol. Can this now be relaxed?
Sent the email at 12:30. Within 40 minutes I had his reply. That's what I call excellent service. I've shortened the answers but basically they were :
2) The esophageal varices will return at some point so keep taking the Omeprazole
3) A limited amount of alcohol shouldn't be a problem
The only one that surprised me was answer 2). Naively I had thought that now the varices had been obliterated that was it but now I understand why I need 12 monthly endoscopies to keep an eye of them.
One more appointment to go - Haematology at Guys on 30th January. In the meantime I can watch the snow melt away......
First a postscript to last week's appointment with the liver specialist :
I was trying to work out why I had been expecting a far worse diagnosis. The diagnosis, when it came, was a bit of an anti-climax, albeit a welcome anti-climax. My worst fears stemmed from the words in one of the consultant's letters - "The Fibroscan shows that the liver stiffness is in a borderline area and there may be significant fibrosis. The raised ALT also points in this direction..."
Which words would you home in on? I missed the "may be" but picked up on "significant" and "fibrosis", hence expecting the worst.
Wednesday 30th January 2013 - Haematology - Guy's Hospital. I arrived in plenty of time for my 11:10am appointment and after waiting for around 20 minutes was called in for a blood test. Whilst I had been waiting I watched various consultants coming and going from the side rooms but did not see my usual doctor. I like to see the same consultant so that I get continuity and they don't have to spend most of the appointment familiarising themselves with my notes.
I asked the phlebotomist if "my" doctor was in clinic today, "Yes", and she pointed out that my notes said on the front that I was to be seen by that particular doctor. She would come and find me at the given time, which is exactly what happened.
This was my first haematology appointment after having the liver biopsy and colonoscopy in the lead up to Christmas so I explained what the results of both had shown. We then had a very full and detailed conversation about where I'm heading bloodwise. It was great being treated as an informed individual. That, together with my list of questions, lead to a large amount of information to take on board. It's probably easiest to start with the list and then go on to the decision that needs taking:
Q: Platelet count, my lowest ever - 66 - had been measured after taking the Dexamethasone.
A: Don't get too hung up with numbers. The platelets were clearly working otherwise you'd be suffering from bleeds.
Q: Is there any benefit in trying to find out what is causing the low platelets?
A: Not really. You could undergo a bone marrow biopsy but it's not going to push your treatment any further forward.
Q: Am I now prone to clotting and what is likely to have caused this?
A: Once you've had a clot you are susceptible to getting another one. The clot is probably due to the peritonitis caused by a perforated bowel back in 1979 and has taken all this time for it's effects to come to the fore.
Q: What is Warfarin expected to do - disperse the existing clot or prevent future clots?
A: The existing clot will remain as the veins have diverted around it. The Warfarin is used to reduce the risk of further clots developing
Q: Is the Warfarin long term and is there a conflict with the low platelets?
A: You will need to take it indefinitely. There is an apparent conflict with taking a drug that is designed to make clotting less likely and a low platelet count that has a similar effect. Warfarin has been successfully used to treat patients with platelet counts as low as 30.
Q: Will I need regular blood tests when I'm on Warfarin?
A: Weekly to start off with and then further apart. Some GP surgeries can manage this rather than coming up to Guy's each time. Once you start on Warfarin you will be under the care of the Coagulation Unit, but all these details can be discussed nearer the time.
Q: Do I need to continue taking iron tablets?
A: Your Hb level is 14. Next time we do another blood test we'll look specifically at iron levels.
We also touched on the side effects of the Dexamethasone I had taken in an attempt to boost my platelets prior to the liver biopsy. These included becoming quite abnoxious and loud. She said she couldn't put that down in my notes as she would get struck off so we settled on "mood swings". The other effects included hiccups, feeling dizzy and eating everything in sight. These were duly added to my notes.
It was then time to discuss the key question - Warfarin or not. The upside is the reduction in the risk of further clots forming; the downside is that thinner blood means you are more likely to bleed and with active Crohn's this could be a problem. We looked at some of the other clotting risk factors. Smoking - never have and never will; heart problems - no; high blood pressure - no; cholestrol - maybe as I was at the upper limit at the last test.
Given the above, the decision whether to take Warfarin, or not, was finely balanced. It was not clear cut. On balance the haematologist favoured me taking it but I was not sure I wanted to take any more medication. She has decided to have further blood tests done - lupus anticoagulant and anticardiolipin antibodies - and then present the results to one of her colleagues, who specialises in just this area, for her opinion on the decision. She'll keep me informed along the way and has set up a follow-up appointment for the end of March, by which time the test results will have been returned and discussed.
If I do go onto Warfarin the target will be to get the dosage right so that my blood has an INR of between 2 and 3, ie 2 or 3 times thinner than normal blood, and this is why the blood tests are so frequent to start of with.
A question - with the talk of blood clots, varices and PSC should I be scared sh*tless or remain laid back. I did the "worried" in East Surrey Hospital last May/June; having lived with Crohn's for so long the "shock" reflex has gone; that potentially leaves angry but angry with whom or about what? I'm therefore going to go for laid back. There's no treatment for PSC but it does usually progress slowly so hopefully there will be some warning when it gets really serious. Plus laid back is good for Crohn's as the more stress that can be dissipated the better. The only things I do intend to change is to stop procrastinating and, maybe, when it's time to retire not to move to the back of beyond where getting specialist medical services would be a struggle.