Category Archives: crohn’s diagnosis

Ignorance is Bliss

(Updated to mark the 41st anniversary of my diagnosis)

Having read a good number of tweets and forum posts I’ve come to realise my level of ignorance. I wonder how many facts about IBD, that are blindingly obvious to others, have simply passed me by or if the various consultants that I have seen over the years haven’t thought it necessary to discuss because they assumed I already knew them.

You may be surprised at my level of ignorance, as I reach 41 years of of being diagnosed with Crohn’s, but I have excuses. Firstly, with no internet for many of those years there was little opportunity for sharing experiences and knowledge so easily. Secondly, during the long period when Crohn’s was pretty much under control, I really didn’t need or want to think about it too deeply. Ignorance genuinely was bliss.

This was doctor’s note from my first admission to hospital (Mayday, Croydon). They didn’t know how to spell Crohn’s in those days
July 1978 – Mayday Hospital. The sister took pity on me and put me in a single room

There are some things I wish I had discovered/been told about sooner. Forewarned is forearmed. It’s just possible that they might help someone in a similar situation to myself.

What I’d Like To Share (WILTS) and apologies if they are blindingly obvious :

1) We’re all different. Probably the most important thing I have learnt from posts and tweets is that whilst there are some common threads, such as fatigue, it is amazing just how different each of our overall experiences of Crohn’s can be. I knew it could affect any area from mouth to anus but it wasn’t until I had read other patient’s stories that I realised just how debilitating and disruptive it can be both physically and, just as importantly, mentally. My own experience, up until 2009, was that it was unpleasant and annoying but didn’t affect my lifestyle very much. Taking everything into consideration I’ve escaped pretty lightly.

I wasn’t aware that bad fatigue is so common. It’s only in the last few years I have been having B12 injections to try and help with this.

I knew surgery was a possibility but not that some patients would have their complete colon removed……the list goes on…….

WILTS – especially for the newly diagnosed – if you are reading forum posts etc. then please remember that whilst there are some effects we all suffer from – fatigue, for instance – other symptoms or reactions to drugs will be specific to that particular patient and it doesn’t mean you will necessarily experience the same. By the nature of forums people post questions usually when they have a problem, not when they are feeling great. If you keep that in mind then you’ll understand why forums are heavily skewed to the negative end of the scale. I can’t remember how I felt when I was told “you have Crohn’s Disease” but I would imagine that nowadays, for the newly diagnosed, the amount of information on the internet is overwhelming.

2) Stomas. Not something I had even thought about as a possibility. In fact something I didn’t want to think about at all, let alone how to deal with one. Definitely a lot of stigma attached and only something that affected “old people”.

Reality didn’t kick in until I had my first meeting with a Stoma nurse (the lovely Fiona at St.Thomas’) who marked a large, black cross on my abdomen so the surgeon knew the optimal position “if a stoma was required“. At that point I couldn’t ignore it any longer and the doubts began.

After the operation the surgeon’s first word was “Sorry” and I knew when he lifted the blanket what I would see attched to my abdomen. I was so high on all the drugs at that point that I just took it all in without reacting. Over the course of the next few days Fiona showed me what I needed to do to change the bag and built up my confidence for “going solo”. She told me that, at 54, I was one of her older patients. So much for stomas only happen to oldies.

I can’t mention stomas without also mentioning the #Get Your BellyOut campaign. They have really helped with getting stomas out in the open, literally, and lifting some of the stigma attached.

WILTS – the thought of having to have a stoma is a lot worse than the reality. Once you get into the routine of dealing with it, it can give you a lot more confidence going out and about and not having to worry about dashing off to the nearest bathroom IMMEDIATELY. A real life changer in a positive way. If you have any problems (and I had a couple) your stoma nurse will know what to do. Stoma nurses are heroes.

3) Lockdown. Before my elective surgery in October 2010 I had a meeting with the Enhanced Recovery Nurse who she went through the pre and post operative phases in great detail – what I should expect, timescales etc. The one thing that wasn’t mentioned was “lockdown”. At least that’s what the surgeon called it. The medical term is “gastric statis” or “post operative ileus”.

After both the ileostomy and reversal operations my digestive system stopped working and I suffered very bad nausea and hiccups. I hadn’t realised just how low nausea can make you feel. It wasn’t until the surgeon was doing his weekly “follow-up” round that he explained it was normal in approximately 25% of patients and it would eventually pass. I wish I had been forewarned so at least I would have known why I felt so bad straightaway rather than wait a few days before having it explained.

WILTS – if you end up having surgery for your Crohn’s (and it is by no means certain that you will) then you may be one of the unlucky 25% to suffer from this “lockdown”. It is unpleasant, very unpleasant, but it’s made a lot easier if you know why you feel bad and that you are not the first to have suffered it. The preferred option is to let natue run its course but there ae things that can be done to try an alleviate the problem. One way or another the feeling WILL pass and your appetite WILL return.

4) BAM – Bile Acid Malabsorption. I’m probably starting to sound like a cracked record on this one (see several other posts). It does appear to be a condition that should be far more widely known about and discussed. After I had my stoma reversed I couldn’t understand why I still needed to take Loperamide capsules to regulate output. I had assumed, wrongly in my case, that reversal meant the digestive system returned to normal. Every so often I would get a bout of the runs and my first thought was it must be the beginning of a Crohn’s flare; mayve I’ve eaten something that diasgreed with me; or could I have picked up a virus? I asked my consultant about it a couple of times and he mentioned something to do with absorption. As an extra capsule of Loperamide would quickly bring it under control I took it no further.

I mentioned it to him again earlier in 2014 and he decided to book a SeHCAT test. The result came back – severe Bile Acid Malabsorption. Having now got the proper term for the problem I was able to look it up and understand what was going wrong. I’ve explained it in another posts so won’t cover old ground here.

WILTS – if you have had surgery that involved removing your terminal ileum then, from what I have read, it is highly likely you will suffer from BAM and unless you are taking medication to combat it, or its side effects, you will be making frequent bathroom dashes. If you haven’t discussed it with your consultant then ask the question. The SeHCAT test is simple and painless.

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.

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…….

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)

 

If Facebook was older

“Thank you for letting me join the group. I’m a 22 year old male and have not been feeling well over the last year or so. I make frequent visits to the bathroom and my weight is dropping off. I’m currently 54kg which is not great when you are six foot tall. I went and saw my GP. He initially told me it was “nerves” and later changed that to “spastic colon” but having recently spent 10 days in Croydon’s Mayday Hospital, undergoing tests, the diagnosis is now Crohn’s disease. I’ve been prescribed steroids for the inflammation and codeine phosphate to slow my system down. I know that the disease has no cure and that if I’m unlucky I could end up having surgery. That’s the bit that really scares me because the thought of going into hospital fills me with absolute dread. Just going there for a barium enema was bad enough….”

If Facebook was older, and had been around in 1978, I may well have posted the above. Nowadays I read similar stories from young adults, many also in their early twenties, explaining that they have been recently diagnosed and the impact that diagnosis has had upon them both physically and mentally. Some are truly heart rending. I tend to forget I was in a similar place all those years ago.

A few decades on and I am currently in clinical remission but not without a few related health issues arising along the way. I would like to hope that others, who have just started out along their Crohn’s path, can achieve a similar sort of equilibrium sooner rather than later. I’m not naive enough to think I have achieved full closure as we all know that Crohn’s can return when we least expect it.

I was determined to at least attempt a partial closure and to this end set out to write a book based on the story so far. With a “big” birthday nearly upon me it is 99% complete. A few finishing touches and that will be it. The next part of the challenge will be to publish it, another new skillset to learn. Watch this space.

cover
Labour of Love

The biggest difference between the year of my diagnosis and the present day is the availability of IBD information. When I was told “you have Crohn’s” it was just something I would have to live with, take drugs for and, if I was unlucky, might end up needing surgery for. That was pretty much it. Nowadays, if you search the web for “Crohn’s Disease” there are over 8,000,000 entries ranging from excellent, well written information sites at the top end of the scale down to the downright dubious ones which are only there to try and sell some miracle cure or diet to desperate sufferers. Then there are all the forums, FB pages and blogs (like this one) where anyone can air their opinions.

I was discussing this subject with my sister-in-law. She asked if I thought I was better off having spent many years in blissful ignorance rather than in information overload. She remarked that I had maintained a positive attitude throughout and thought that it must have helped coping with the disease. My immediate response was “I don’t know”. I can see the arguments from both sides but having given it further thought, on balance, blissful ignorance was probably best for me. Fortunately/unfortunately this is no longer an option.

As ever one train of thought leads to another. For instance, what should the patient expect from their consultant? At initial diagnosis should they be told the worst possible outcome or should all the tests results and procedures to be completed before going that far. I had reason to question this at the end of May 2012 when it was possible that I was (and still may be) suffering from PSC (Primary Sclerosing Cholangitis). To confirm the diagnosis needed a number of scans and biopsies to be carried out but before any of these happened the consultant was talking about needing a liver transplant. You can imagine how I felt, sitting on the edge of my hospital bed, to be confronted with those words. It takes a lot to faze me but even I didn’t knw how to react. Having now had the tests it is possible that I have the beginnings of PSC but nothing definitive. Did I really need to have the threat of a transplant dangled before me? Was it all down to a lack of bedside manner? Can bedside manner be learned? (That would make a good subject for, maybe, a survey).

..and my other question – how should we respond to the newly diagnosed, or waiting to be diagnosed, IBD sufferers on SoMe? Personally I work on the basis of trying to be positive, as I have plenty of positives along with the not so good times. I have seen other respondees jump straight in with tales of multiple operations, months in hospital and relationship break-ups. The FB entry that prompted me to write this piece was from a new sufferer, along the lines – “I’ve got Crohn’s; it will mean having an operation and ending up with a bag; my life is over.” After many supportive comments one person responded with “if it’s a choice between dying or having a bag then I know what I would choose.” To me it seemed so insensitive.

I’m not denying that all these things can happen but should we really burden someone who is just coming to terms that they have the disease with all the potential “baggage” that may, or may not, come with it? After all, we all suffer in different ways; we all cope in different ways; we all survive in different ways.

I would like to know if you think I’ve got this all completely wrong or if you agree. Answers on a tweet to @crohnoid.