Category Archives: Crohn’s Disease

Lucky Bleeder

This is an edited version of the chapter “Lucky Bleeder” from my book “Wrestling he Octopus”

Saturday 26th May 2012 – I was starting to feel rough again and would see how it went over the weekend as, fortunately, I was due to see my gastroenterology consultant the following Monday. Towards the end of dinner my body told me not to eat any more, not another mouthful. Normally the message is: “you’re starting to get full, slow down” but this was a definite: “stop immediately“. I had never experienced such a clear signal before.

Sunday 27th May 2012 – I had a simple breakfast but afterwards didn’t feel like eating anything else. I could only manage a little stewed apple for lunch but reassured myself that this could all be sorted out when I saw my specialist.

Monday 28th May 2012 – Guy’s Hospital – Gastroenterology – the original intention was to go into work, as usual, then catch the Tube down to London Bridge in time for my ten o’clock appointment.

When I woke up I was feeling unwell and decided to catch a later train, going directly to the hospital. I was used to an early start with virtually no traffic so rather underestimated how long it would take to get to the station from home. By the time I arrived I could hear the train pulling into the platform. I didn’t realise that it would wait there five minutes before leaving so tried to run for it and realised just how bad I felt. My chest started heaving and my heart pumping. I really thought I was having a heart attack. Once on the train I managed to take some deep breaths and gradually return to some type of normality. The rest of the journey was uneventful.

I made my way to the Outpatients’ department and waited to see my usual  consultant. I went through my list of queries and  went on to discuss my recent experiences of passing a jet black liquid from my back end. He asked me to get a sample for analysis which I thought would be easy but no luck.

Eventually I was on my way home and by now the temperature was high. By the time I arrived home I was feeling exhausted and went to have a lie down to recover. Around six o’clock I started to feel sick so disappeared into the toilet and then it happened… (skip the next paragraph if you are squeamish).

I brought up a large amount of what looked like redcurrant jelly but was clearly freshly congealed blood. I must have gone into shock and just sat there looking at the mess for a few minutes, thinking “What do I do now?” (Not like me at all. I usually react quickly to these little set backs, decide the best action to take and get on with it, but this was something I hadn’t experienced before. I will admit that for a while I simply couldn’t cope).

When my senses returned I decided that this was definitely a 999 moment. My wife made the call and I could hear her responding to the long series of questions that you then get asked by the operator. The decision to send an ambulance was made and she then hurried herself to put some things into an overnight bag before the ambulance pulled up our driveway. She hadn’t quite finished as the ambulance arrived. Five minutes from call to arrival. When she opened the door she recognised the paramedics as the ones who had taken me into hospital the last time we had reason to call 999. They came in to see what state I was in, took one look at the blood surrounding me and, to put me at ease, told me that it was only a small amount! It wasn’t.

I was loaded into the ambulance and then went through various tests before we set off. They were obviously concerned that my blood pressure was very low. They put me on a drip and the driver said: “I think we’ll go for the siren……”

A few minutes later we arrived at East Surrey Hospital and I was taken straight into the A&E assessment area and was immediately seen by a doctor to make sure I was stable. Over the next hour or so I was seen by a couple more doctors whilst they decided the best ward to send me to. The decision was taken to admit me to the Medical Assessment Unit where I underwent a further examination.

Now that I was stable and had made it to a ward there seemed little point in my wife staying. I had spent long enough in hospital environments to be perfectly happy to cope on my own. My sister had turned up to take her home so we said our goodbyes and I waited to see if I would be moved again.

My wife returned home and had to clear up the blood from the floor. I’m so lucky to have someone tough enough to support me when things are going messily wrong. As she always points out: “Women get all the good jobs”.

Back in the hospital they decided to send me to the ward which specialises in gastroenterology and I was wheeled off to this new location. I was seen by a duty doctor who made sure I was comfortable and worked out what drips I needed.

Tuesday 29th May 2012 – The rest of the night was spent undergoing regular checks on my blood pressure and temperature. I didn’t get much sleep but was just happy to be in the best place given the condition I was in. The ward was in the new section of the hospital and had only been opened three months previously.

I quickly discovered that Charlwood Ward was close to the nurses’ accommodation block. I can guess where your thoughts are leading at this point but my joy was due to having unlocked access to their wi-fi.

During the day I saw various doctors who were trying to decide the cause of the problem and which tests I should undergo. Their initial thoughts were that my Crohn’s could have started up in my small intestine or it could be gastritis or even an ulcer. The immediate priority was to have a camera down my throat (an OGD – oesophago-gastro-duodenoscopy) to see where all that blood had come from and, depending upon the result, follow up with a colonoscopy. They tried to get me onto that day’s list so I wasn’t allowed to eat anything.

Unfortunately an emergency case took priority and at six o’clock I was told that I could eat some supper. The doctor was very surprised at how calmly I reacted when I was told that I wouldn’t be having the test done that day and said she wouldn’t have been so laid back. I can only think that my attitude was driven by realising that I was in the best place, should I suffer from further blood loss, and that an extra day in a “safe” environment should not be seen as a problem.

It was decided that I needed to have a transfusion as my blood count had fallen to 6.5.  A second drip was added and fed into the cannula in my left arm. Cannulas can be inserted anywhere that a good vein can be found so are usually into the back of the hand or in the forearm at the wrist or further up, close to the elbow. My one had been inserted in such a way that if I bent my elbow it would cut off the supply. I spent most of the day forgetting to keep my arm straight which meant the alarm kept sounding and the nurses had to reset it.

Wednesday 30th May 2012 – When the doctors turned up for the ward round I asked them to ensure that I was on the endoscopy list and that whilst I had accepted that yesterday’s cancellation was due to circumstances beyond anyone’s control, I wouldn’t be so laid back again. Back to being “Nil by Mouth”. The blood transfusion had brought my blood count up to 8.6, still low but improving.

I had learned from previous experience that it is important to make a list of any questions you want answered. I had written down a dozen or so items and we went through them one by one. A lot would depend upon the outcome of the endoscopy and there were some issues to be discussed with the consultant. As luck would have it he appeared and I was able to ask him what the prognosis was. Again it would really come down to what the ‘scope showed.

Just after noon I was wheeled down to the endoscopy unit, adjacent to the ward, and into the new waiting area. When I entered the procedure room the doctor asked if I’d had a gastroscopy before. I replied: “about 12 years ago“, to which he responded: “you’ll be pleased to know that the tubes have got smaller and the drugs more powerful“. I didn’t take in much of what was happening and the next thing I knew I was waking up ready to be wheeled back to the ward. I couldn’t feel where the tube had been put down my throat. Definitely an improvement over my previous experience.

Back onto the ward and the wait to find out what the gastroscopy had revealed.

Thursday 31st May 2012 – as ten o’clock approached it was my turn to talk to the doctors on the ward round. They were expecting the gastroscopy to have shown that I had an ulcer, which had burst, or that the Crohn’s inflammation had spread. What they found surprised them – oesophageal varices. Prominent veins growing in the lower third of my esophagus and usually related to alcoholism! I looked them up on the internet and found that there is a possible link with the azathioprine drug that I had been on for seven years.

The next step was to have an ultrasound scan to look at my liver as they wanted to rule out portal vein thrombosis. This takes the form of a clot forming in main vessel that carries blood from the gastro-intestinal tract, gallbladder, pancreas and spleen to the liver. A blockage can cause new veins to grow to relieve the pressure and these may appear in the esophagus. They hoped that the scan could be done the next day.

Not wanting to lose more time I made sure that the nurses knew I was expecting to go for the ultrasound scan today, not tomorrow. It worked and they gave me an lunch early as I was on the list for the scan at 6:30pm.

Meanwhile one of the registrars spoke to my consultant at St.Thomas’ to appraise him of the situation and sound him out regarding starting steroids should it turn out that Crohn’s had re-emerged. He told the registrar that he had planned carry out another colonoscopy before making that decision and wondered whether the suspected liver damage could be due to the azathioprine.

As usual the nurses were tremendous. It wouldn’t be fair to name them but one came in to see us in the early afternoon to check our ward was OK and she looked very upset. She said that it had been a hard day and that one of the patients had suffered a heart attack from which they didn’t recover. She said that even after all her years of nursing she had to go outside and have a cry.

At a quarter past six the porter turned up to wheel me down to ultrasound. I was happy to walk but he had a chair so I got onboard and off we went with him singing away and saying hello to everyone we passed, all of whom he seemed to know personally. We even passed a pregnant woman to which he commented: “it’s a girl, love”. When we got down to the ultrasound area there were two women waiting. He pushed me into a position so I was facing both of them and said: “I’m sure you’re man enough to handle two women” and left me there. Ice well and truly broken

It was soon my turn to go into the scanning room. After a few minutes’ wait I was laying on the table, covered in KY jelly, and with the scanning head being run all over me. (I’m sure some people would pay good money for that). The scan was expected to show some damage to my liver but didn’t appear to. I would need to wait until I saw the doctor to go through the full results. It was time to return to the ward. Visiting time was due to start in five minutes. I hung around for a while waiting for the porter to reappear but there was no sign of him. The X-ray nurse took pity on me and said I could walk back to the ward with my notes. It meant that I got some much-needed exercise and was back in my bed for when my wife turned up.

Friday 1st June 2012 – there was a much-reduced number of doctors on the ward round. When they arrived at my bed I asked what the outcome of the ultrasound scan was. It showed slight splenomegaly (enlargement of the spleen), a 14mm gallstone but no hepatic or portal thrombosis. The doctor’s notes finished up with: “Explained to patient unknown cause for liver issues. We need to further investigate…

With the Bank Holiday weekend coming up I knew everything would go into limbo. At weekends there was a team of doctors that covered the wards but only saw patients that were causing concern. Staving off the boredom was going to be difficult. I asked if I could at least spend Sunday at home and had been told there shouldn’t be any reason not to.

Late afternoon one of the doctors came in to see me. I told him that I was planning to spend Sunday at home. He was concerned that my blood count had decreased to 8.0. The decision on being allowed out for the day would be made tomorrow when the next set of blood test results were available. I pointed out to him that there would only be a skeleton staff of doctors on duty and asked if they would have time to check my blood test results. He wasn’t sure. When my wife turned up in the evening I had to tell her that my planned trip home on Sunday was in jeopardy.

Saturday 2nd June 2012 – I had my blood sample taken as usual but never saw a doctor. I said to the sister that there was some doubt as to whether I would be spending Sunday at home. She replied that there was no reason to stop me and that some doctors always “dithered”. My day of freedom was back on.

Sunday 3rd June 2012 – it was nice to spend a few hours at home with my wife. Our dog seemed pleased to see me, partly because I didn’t play my guitar. I even got to fill the haynets and make up the dinners for the ponies.

I returned to the hospital just as they were serving up dinner – pasty in a sea of baked beans. Crohn’s patients are supposed to avoid high fibre foods but it looked very appetising and the ward was well ventilated so I thought what the hell and enjoyed every mouthful.

Monday 4th June 2012 – Spring Bank Holiday – more limbo because of the Bank Holiday. The only doctors on duty were seeing patients by exception. I could have spent another day at home but realised too late.

The phlebotomists did their usual rounds and I later found out that my blood count had dropped back again to 8.0 from 8.6. Not good and it would prolong my stay in hospital. The sister said that the doctors would be doing a proper ward round tomorrow so there was time to get a list of questions together for the morning.

My evening was spent watching the Jubilee Concert. We had applied for tickets and would have been disappointed if, having managed to get any, had then not been able to use them.

Tuesday 5th June 2012 – The Queen’s Diamond Jubilee – I didn’t get a particularly good night’s sleep as the patient next to me had his overbed light on all night. I couldn’t be bothered to get it switched off. I knew that whatever sleep I had missed could be made up for during the day. There was always a lull in Ward activity after the beds have been made and before lunch was served. By having a shower as soon as the fresh towels were available you could keep out of the way of the bed making and when you finished there’s a nice fresh bed to doze in.

I suspected that at some point I would meet my former consultant. That’s the one I had emailed around a year previously stating that I was now being treated by St.Thomas’ and not to bother to make any further appointments. I had a very good reason for doing this and I have subsequently found the chain of email correspondence that corroborates this.

I’m not going to go into all the details of this encounter but suffice to say that initially he would not look me in the eye and my decision, from a year ago, was clearly still bugging him. The atmosphere could be cut with a knife.. I reiterated my original reason for leaving his care and this may not have helped the situation. (His point of view was recorded in the ward notes). At one point he suggested that maybe it would be best for me to be put in an ambulance and transported up to St.Thomas’. The decision to move my treatment had not been taken lightly as it was far easier to get to the local hospital, 10 minutes from home, than to catch a train to London but I was now more convinced than ever that I had made the right choice.

At the end of a long and detailed discussion on what may have caused my current situation, and whilst the junior doctors listened on, we ended up agreeing that we should do what was best for my long-term health and shook hands. Subject closed. It was time to move onto the tests required and the best place to have them carried out. Clearly I was not in a position to think about discharge yet.

The recurring terms he used were primary sclerosing cholangitis (PSC) and portal hypertension. He thought that they were symptoms of a malfunctioning immune system and also linked to my thrombocytopenia (low platelet count) and enlarged spleen. I thought that the platelets issue had been brought on by the use of azathioprine but he was now sceptical at this. There was then mention of needing a liver transplant. My brain went into overdrive. Internally I was saying to myself. Liver transplant? Liver transplant?? What would that involve? Wasn’t there usually a waiting list? More major surgery? Would my body cope? How soon? It would be something to mull over whilst killing time sitting in a hospital bed. “Mull over”? Maybe an understatement.

After the ward round was complete I called one of the junior doctors over and asked: “how do you spell that primary thing the consultant mentioned as I want to look it up on the internet”. She replied that it might not be a good idea at present. I decided to park the research for the day but happened to mention it to my sister who immediately looked it up and rang me back. It was all a little scary (more understatement). The simple definition of PSC is a chronic disorder of the liver, of uncertain cause, in which the bile ducts within and outside of the liver become inflamed, thickened, scarred, and obstructed.

Ultimately, if it was diagnosed, the long term prognosis was the liver transplant he mentioned! The only way of getting a definite diagnosis would be to carry out a liver biopsy. That would involve passing a long needle between two ribs and into the liver to take a core.

With regards to where the tests should be done and the subsequent treatment – I could not remember what we concluded. I think my head was filled with so many other thoughts by then. Fortunately the doctor’s notes record that, due to the complex nature of my Crohn’s, I would be better off remaining under St.Thomas’ as they had more extensive facilities than East Surrey. They were also equipped to investigate my latest problem. I would revisit that subject the next morning during the ward round.

I try to keep a cool head at all times so it didn’t take long before I started to rationalise the information I had just been given but a little voice at the back of my head kept saying: “you’re only keeping calm because you don’t understand the full implications of what you’ve been told“. When I caught sight of the IBD Nurse I asked her if she could answer some questions, including translating all the long words the consultant had used. She could tell by some of my questions that nobody had ever sat down and gone through some of the basic concepts of Crohn’s and their implications.

Back in the ward it was decided that I should be given another two units of blood. Since I hadn’t had any for a week another crossmatch was needed as they only last seven days.

One of the young doctors said he would insert a cannula so that he could take the blood sample and then use it for the transfusion. I asked him, in all seriousness, if he was an expert with cannulas. He replied that they were one of his routine tasks. My previous experience had always been if you want it done properly ask a nurse. Unfortunately I wasn’t wrong. He took three attempts to get a needle into my right arm. The third attempt resulted in a working cannula but it was in a very small vein and close to my hand. Very inconvenient when eating etc.

Later in the afternoon the first unit of blood was ready for infusion. The nurse connected up the pump and switched on. It hurt. She decided that I would be better off having a new cannula put into my left arm. Without any fuss or need for a second attempt she inserted the new cannula in just the right position, reconnected the blood and removed the old one. From this experience I formulated my first law of cannularisation – “Don’t let a doctor anywhere near one”.

In the evening my wife came to visit. I had already rung her in the morning and told her the potential diagnosis so she had a number of questions. When the IBD nurse came into the ward we called her over and my wife was able to ask some of the questions she had thought of during the day. It was great that she had this opportunity as I didn’t have many of the answers.

Wednesday 6th June 2012 – that must have been the quietest night so far on the ward. I slept until about 3am but then couldn’t get back to sleep until around 7am. The phlebotomist turned up to take more blood samples and she was followed by the registrar and junior doctors on their round. I had quickly made a list of things to ask them – the top question was “plan for escape”.

I was somewhat taken aback when the Registrar said that as long as today’s blood test showed an Hb higher than 10 then I could go home. Today! I really hadn’t been expecting that. I had told everyone I was in until at least the weekend or possibly would be transferred to St.Thomas’. I now had to wait until around until 1 o’clock for my score.

I discussed various things with the Registrar, including revisiting what the gastroscopy and ultrasound tests had shown. For my long term care they were suggesting that I remained under St.Thomas’ and would be liaising with my consultant there to make sure the necessary test results were passed over. One of the junior doctors had been tasked with making this contact.

I rang my wife and then my sister to arrange to be picked up in case the result of my blood test was high enough. I then decided to contact St.Thomas’ to make sure they were aware of what was going on and to ask if I should start taking the budesonide that I had been due to commence. I emailed my consultant’s secretary and received a prompt reply telling me that the dialogue between the two hospitals had started and to hold off the budesonide for the time being.

I didn’t want to tempt fate so held off changing into my going home clothes. Just after lunch I had the good news, escape imminent. I just needed Pharmacy to sort out my medications and for the doctors to write my discharge letter. I thought: “that can only take a short while”. How wrong I was. If I had known yesterday that release was imminent I would have found the pharmacist and ensured that sufficient quantities of drugs, with the right labels on, were ready for me. I started to wonder if they deliberately chose to employ the slowest of the slow. Could the criteria for getting a job there be turning up late for the interview?

I finally got away at around six o’clock. It took close to five hours to get the drugs out of the Pharmacy. If I had known it would take that long I would have gone home and returned later. I don’t usually do “wound up” but this was an exception.

I was now resigned to yet another string of appointments and procedures to try and get to the bottom of my latest crisis. Was a liver transplant a real possibility?

Subsequently I had my first variceal banding on 3rd September at GSTT and then a further 3 sessions, at 3 week intervals, until the varices had been obliterated. Since then my Christmas treat is an annual endoscopy during the 3rd week of December.  So far I’ve only needed one session of banding, in 2014.

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.

Tired and Emotional

Emotions

I’m not an emotional person. I don’t know whether it is simply the way I’m made or that I had any emotion knocked out of me as a defence mechanism to cope with the early death of my father. In some ways this lack of emotion may have helped me survive those challenging experiences and gory sights I mentioned earlier. So I was surprised that, when researching my book, I became quite emotional when reading the account of a meeting with one of my surgeons shortly after my ileostomy. It still has the affect to this day.

“He remarked how well I looked considering: “what they had done to me”. He had joined his old colleagues at St.Thomas’ on the day to take part in the operation which he described as a “classic”. He said it was one of the most complex they had ever carried out. My innards were in a really bad way.

He had a trainee doctor in with him for the clinic and was showing her my pre-operative CT scan. He described it as looking like an octopus. Where had I heard that before? My intestines had, in places, attached themselves to other parts of the body such as the back muscles. That last comment was quite a revelation and would explain the back pain that I had been suffering from for the last couple of years. I dread to think what would have happened if the surgery hadn’t been carried out when it was.”

I’ve tried analysing what triggers these feelings but had not been able to reach a conclusion. Then I heard this. Maybe this explains why…..

Adrian Chiles was interviewing the radio presenter Mark Radcliff about the cancer he had been treated for. Here is part of what he said “I took a little bit of counselling at the Maggie Centre ….I’m not someone who cries a lot but when I went into theCentre the woman, who was counselling me, asked ‘So what point are you up to?’ and I just burst into tears. She said ‘Have you just finished your treatment?’ It’s a very common thing at that point. You realise the struggle you’ve really been through. It dawns on you.”

Maybe it dawned on me just what my mind and body went through and come out the other side smiling and with a very positive view of the future. Do other IBD patients experienced similar emotions?

Postscript

After writing this post I was discussing coping with Crohn’s Disease with my wife and mentioned my theory that a lack of emotion might just have helped me deal with it. She genuinely surprised me by saying that if she had Crohn’s she “wouldn’t want to have gone on” due to the embarrassment of the tests and procedures we undergo, the stress of being taken short and the pain we experience. It brought home to me how differently each of us can react to this disease.

….and the tired? Two doses of Vedolizumab may be the cause of additional fatigue

Flushed with Infusiasm

At the end of my last post I had made the decision to start Vedolizumab (Entyvio) and was on the point of contacting the IBD Helpline at Guy’s and St.Thomas’. I dropped them an email, which is how contact is made nowadays.

The next day I had a call from the hospital to arrange my first infusion. “Vedo days” are Wednesdays and Fridays. As luck would have it I already had a haematology appointment arranged for 10:30am on Wednesday 29th May so the infusion was booked for an hour later (on the basis that haemo clinics usually run on time). A new chapter in my “Crohn’s career” was about to be written.

The last infusion I had was at the end of 2009 (Infliximab) and that took several hours to complete so I was intrigued to know if Vedo would be the same. I canvassed the opinion of some other “infusees” and the concensus was that, due to extra monitoring, I should allow about 4 hours for the procedure. Forewarned is forearmed.

Wednesday 29th May 2019 – Guy’s Hospital – IBD Infusion Unit

In the interim the haematology appointment had been cancelled due to the consultant being away. I took advantage of the free time to have a walk along the Thames, one of my favourite pastimes, and then a quick visit into Tate Modern to use their “facilities” (recommended).

View from Blackfriars Bridge
Cruise Liner tied up alongside HMS Belfast

I arrived at the Unit with a couple of minutes to spare and handed in my calprotectin sample.  I was asked to settle myself down in one of the infusion chairs. A nurse came over to introduce himself and ask me a few questions before starting the infusion. The standard ones : what medications are you on; are you allergic to anything, how are you feeling? etc. He warned me that I might feel more fatigued than usual afterwards.

The nurse explained that he worked for Takeda, the company that manufactures Vedo, but was seconded to the NHS. I asked how long the procedure would take and was surprised when he replied “30 minutes Vedo followed by a 30 minute saline flush. 60 minutes in all”.

Cannula inserted; Vedo connected; and I settled down to read a book about heart surgery (“Fragile Lives” – Prof.Stephen Westaby). I know as Crohn’s patients we all go through some fairly challenging experiences and witness some gory sights when in hospital but even I found myself squirming at some of the Professor’s descriptions. Luckily there are no photographs!

Vedo finished, flush attached, back to the book and what seemed like a few minutes later the whole procedure was over. I was offered coffee and biscuits and then I was on my way home. My next infusion is set for 12th June., immediately after a rebooked haematology appointment.

Wednesday 12th June 2019 – Guy’s Hospital – IBD Infusion Unit

Time for my second infusion, but first there was a Haematology appointment to get out the way and with it a blood test. That meant I already had one hole in my arm and now I needed another! Once I had answered the standard set of questions that you have before any infusion the nurse inserted another cannula and I settled down with a book for the half hour infusion and then a further half hour flush. The only difference with my previous visit is that there were no coffee or biscuits on offer!

View from the atrium at Guy’s Hospital

I had been hoping that the calprotectin result for the sample I took in on 29th May was available but unfortunately it takes more than 2 weeks for samples to be processed. (I wonder how the home testing kits can give a result so quickly?)

Next infusions booked for 12th July and 9th August.

Never one to waste a visit to London I spent the afternoon at the Royal Academy Summer Exhibition. Not a classic year in my opinion.

Royal Academy – Summer Exhibition 2019

Is the Vedolizumab Working?

How do I feel? Maybe a little more fatigued but no great difference. Is it working? It’s far too soon to know after just one dose but how will I know if it is working anyway? A little explanation –

The lead up to being prescribed Vedo is described in previous posts but maybe I should do a brief recap. My calprotectin level started showing an upward trend towards the end of 2015. Subsequent colonoscopies and small bowel MRI scans showed nothing that would account for this so the issue was parked as a “mystery’”. During that period I’ve been feeling fine. In fact I’ve been OK since my reversal, in 2011, and not taking any Crohn’s drugs.

Calprotectin Test Values

It wasn’t until a gastro appointment in October 2018 that I suggested we should do some further investigation as my calprotectin level had reached 1300. A capsule endoscopy had been mentioned in the past as it would get a good look at the whole of my digestive tract. My consultant agreed it was time to give it a go and one month later I was strapping on the recording unit and swallowing the capsule.

I did not get an official copy of the results until March 2019 but already had an indication, from a conversation with the Head of Department, that it showed mild to moderate inflammation in my small bowel. When I saw my consultant again we discussed starting Vedo . He had already obtained the budget to cover it (approx. £1,000/dose). How would we know if it was working?

If I had been suffering flare-ups then judging its effectiveness would be simple but as I am not feeling any physical symptoms the only monitoring will be regular calprotectin samples. I forgot to ask how often constitutes “regular”. At the end of the first year I will have another capsule endoscopy and an MRI scan.

Viva la Vedo

Monday 15th April 2019 – Guy’s Hospital – Gastroenterology

The Vedolizumab Decision

(This post records an important discussion prior to the next stage of my Crohn’s treatment)

The gastro clinic at GSTT is a victim of its own success. Once a patient gets referred there they invariably don’t want to return to their original hospital. As a result clinics run late. I guess they must be overbooked to cope with the numbers. But forewarned is forearmed so I always take something to read. Having registered with reception I settled down with my book. A nurse appeared and apologised that the doctors were running 75 minutes late. I wondered if there would be time to go and get a chest x-ray (booked some while ago). It was worth a try. Ten minutes later I was back in the outpatients’ waiting area with the x-ray complete. Excellent service.

When you get called into the “inner” waiting room you know it won’t be too long until you see the consultant. I asked the nurse to put a note on my folder that I wished to see my usual doctor. After a few minutes he was calling my name. As I entered the consulting room I had a list of questions in my hand as an aide-memoire.

Capsule Endoscopy Report

He asked if I had received a copy of the capsule endoscopy report. Yes, but didn’t know what I was looking at. He worked his way through the document stopping at any frames of interest – “that looks like an ulcer, and there, and that’s one…..” – the conclusion was mild to moderate inflammation in my small bowel. I asked whether it was possible to work out location of inflammation as I get a pain across my midriff,  just above my belly button. He did not expect that to be where pain would be apparent. I mentioned it seemed worse when wearing a tight belt and explained about the hernia that had been found a couple of weeks previously and how it hurt more since surgeon had “poked around”. Normally a hernia would be put right in a simple operation but due to varices growing in my abdomen the surgeon was not happy to proceed. I had added it to my “on-hold” list – cholecystectomy; hernia repair.

Next he ran down the results of my recent blood test. “You’ve had chickenpox but not glandular fever as no antibodies are present, oh and you haven’t got AIDS but you probably knew that”. I replied that I had a very bad bout of glandular fever at the beginning of my ‘A’ levels, which accounted for why I did so badly. Maybe antibodies disappear over time. I was pleased to see that my Hb had now risen to 11.8. There was another test, looking at protein bands, one of which was marked “insufficient sample provided” which I thought strange as the phlebotomist had taken nine, full to the top, phials last time. I would need need to give a further sample after the appointment.

I outlined my reticence about starting Vedo :

  • Having been Crohn’s drug free for nearly 8 years I was hesitant to re-start
  • Side effects
  • Co-morbidities
  • Infusions. Whilst I like trips to London (at the moment) I might not do so as I get even older

What could happen if I decided not to start Crohn’s drugs? The worst outcome would be the inflammation becoming so advanced that the bowel could perforate or form fistulas and result in emergency surgery. Given that I should try to avoid surgery this sounded like a risk not worth taking.

The side effect profile of Vedo is very good and it is proving very successful. A recent study into its use with Ulcerative Colitis showed better results than expected. I said that I had seen some slides from that presentation as a member of the audience had posted them on Twitter. He seemed a little surprised at this but added “I do talk a lot!

Is Vedo compatible with my co-morbidities – bile acid malabsorption; portal hypertension; thrombocytopenia; gallbladder issues? I do have rather a lot of them. He told me not to be concerned about them and that I must be made of stern stuff as there were many patients at my age who were in a considerably worse state!

With regards to travelling for infusions, a self administered version of Vedo, using compressed air rather than a needle, has been developed and will undergo 2 years of trials. It should be available in 3 years time then no more infusions.

I asked in light of the calprotectin tests, suggesting the inflammation started early in 2016,  if I should have had a capsule endoscopy sooner than October 2018 ”  His response was that the first place to look following raised calprotectin results is lthe arge bowel. My colonoscopies showed nothing. The subsequent small bowel MRI also showed no inflammation. However given my experience he was now favouring earlier intervention with a capsule for other patients.

How would we measure the efficacy of the drug? Regular calprotectin tests throughout the year and at the end of the first twelve months a capsule endoscopy and small bowel MRI. The one thing I didn’t clarify is whether Vedo is taken to get one into remission and then continues as a maintenance dose or if another drug is then substituted.

I said that I wanted to discuss the situation with my wife before making a final decision but was leaving the consultation with a lot more positive thoughts about Vedo than when we started. How would I give the go ahead? “Contact the IBD Helpline and take it form there“. With that we shook hands,  I bade him farewell and headed for the blood test room.

Having weighed up the pros and the cons, and with the additional imperative of avoiding surgery (if at all possible) it would seem to be a no-brainer that I should at least try Vedo to get me back into remission before serious damage is done to my gut.

Now where’s that IBD Helpline number……

 

Pendulum

When I was younger, so much younger than today I never….

….wanted to go anywhere near a hospital. It was my biggest fear. Some of my schoolmates had already been incarcerated to have tonsils or an appendix removed. I don’t know what scared me specifically. Was it the thought of surgery? Was it an enforced stay away from the comforts of home and family? Was it thoughts of my own mortality? My fears turned into reality, in my early twenties, when I found myself in an ambulance, sirens blaring, heading for Croydon General Hospital with suspected appendicitis.

As it turned out it was more sinister than that – a perforated bowel that had leaked into my abdominal cavity and peritonitis had set in. (More of this later) When I left hospital after 3 weeks, most of which were spent on a “liquids only” regime, I had not suffered any particularly traumatic experiences but it had not lessened my fears.

I had been told that this first Crohn’s surgery was unlikely to be the last. In the ensuing years I still considered the knife to be the “last resort”(and, to be fair, so did my consultants). It was the “backstop” (to use a popular word) once all viable medication had been exhausted. In 2010 I was faced with surgery again having tried all the possible drug treatments. Thirty years between operations? Not bad. Three times longer than anticipated. Following the successful removal of a terminal ileum stricture, temporary ileostomy and subsequent reversal, I revisited my thoughts. If I had chosen elective surgery years earlier would my QOL have been better, sooner? The pendulum had now swung the other way and I started to advocate that surgery should not be considered a “last resort” or an indication that all other treatment had failed. It should be seen as an alternative to drug based treatment. It’s an area which various learned bodies are researching.

Then in January 2017 I turned yellow (jaundice). I was sent to see an upper GI surgeon (at my local hospital) who explained that the solution would be to remove my gallbladder. A relatively simple procedure, carried out laparoscopically. When he examined me he happened to notice the large, laparotomy scar stretching up my midline. He asked me to go through my medical history. At the end of my story, which included Crohn’s, portal vein thrombosis (probably due to the peritonitis), enlarged spleen and varices, he concluded I should be referred to a specialist liver unit as the operation would require specialist facilities.

A few weeks later I went to see another upper GI surgeon, this time at Kings. His registrar had started to go through the standard, pre-surgery checklist when I produced a drawing showing the route that my health had taken so far. She metaphorically gulped and went off to find the lead surgeon. He expressed his concern about carrying out surgery and after a lengthy discussion we concluded it would be best to leave well alone and only operate if it became absolutely necessary.

At my request I saw him again a couple of weeks ago as I had noticed a pain in my right hand side and wondered if it was a portent for needing his expertise with a scalpel. He prodded and poked the offending spot and announced that I had a post-operative hernia at the site of my former stoma. Again this would usually be a simple day operation but given my history it was another one to add to the “do nothing unless absolutely necessary” list. It dawned on me that the pendulum had now swung back to its original position. Due to circumstances, in my case, surgery really should be considered as a last resort.

In the meantime the long running “why is my calprotectin so high” question had been resolved. A capsule endoscopy in November 2018 showed that inflammation in my small bowel has returned. I have a meeting with my gastroenterologist next Monday to discuss starting Vedolizumab. I was minded to suggest holding off for the time being but that may not be a sensible position to take as I really do need to avoid surgery for as long as possible. Should be an interesting discussion.

Pre-MAB

I need some help from my fellow IBD patients. I had a phone call from one of the IBD nurses at GSTT explaining that they wanted to start me on Vedolizumab. The last time I was in this situation was August 2009. I was being given the choice – Infliximab (Remicade) as a “final, last chance, before surgery”. A real no brainer and no need for a long list of questions before making the decision. Who would choose the knife over a drug? (That would make a good subject for a new post)

Now, nearly a decade later, I’m being offered another MAB. (I won’t go into the reasons why but if you are interested this link opens a post, explaining the issue and what it’s like to have a capsule endoscopy, in a new tab – http://www.wrestlingtheoctopus.com/fantastic-voyage/).

I won’t make any decision until I have spoken to my gastro consultant – appointment set for 15th April.  Ahead of my meeting I need to get a list of questions together, usually a fairly simple task, but this time it is uncharted territory…..and that’s where I could do with your help. Have you had to make this decision? What questions did you ask/wish you had asked?

Here’s my latest list (26th March). Are there any glaring omissions? I’ve split them into categories :

Blood test results
  • What did the nine phials of blood taken recently show?
Capsule endoscopy results
  • What exactly did the capsule endoscopy show in the way of severity of inflammation and locations? Was it confined to the small bowel?
  • Would it account for pain around midriff? (Could be the hernia that the upper GI surgeon identified a few weeks ago, or maybe adhesions or scar tissue from laparotomy)
  • Was there anything else of note from the capsule endoscopy? Could anything account for my low Hb?
History
  • Looking at the calprotectin levels it suggests that inflammation started somewhere between November 2015 to June 2016 but was not apparent on other tests
  • It has been 6 months between having the capsule endoscopy mid-November and the appointment.
  • The above suggests that there is no urgency to start on treatment. Is this right?
  • My QOL is good apart from an ache on my right side which the Upper GI surgeon has diagnosed as a post-operative hernia at the site of my ileostomy
  • Surgeon does not want to carry out cholecystectomy or even hernia repair due to varices growing around gallbladder and elsewhere within abdomen. This suggests that I should try and avoid any colorectal surgery at all costs.
Vedolizumab
  • What was the gist of the discussion that resulted in proposing Vedo?
  • How will Vedo help me now? …and in the long term?
  • Are there any side effects I need to know about? Are any of these relevant to my other conditions? (BAM, PVT, splenomegaly, thrombocytopenia, gallstones)
  • Ongoing monitoring regime? Frequency?
  • How good a measure would calprotectin be for progress in treating small bowel Crohn’s?
  • Does the efficacy of Vedo differ as one gets older? Do the side effects change?
  • Reason for needing chest x-ray
  • Haematology suggesting another bone marrow biopsy. Do we need to wait for result before making decision?
Alternatives
  • What if I decide not to go back onto Crohn’s medication at present?
Reasons for not wanting to go onto Vedolizumab
  • Side effects of Vedolizumab.
  • Long term commitment to an infused drug
  • Trips to London (I love London so you would think a few more trips would be welcome but as I gel older will I really be so keen?)
  • Is there the opportunity to have infusions at a local hospital?
Iron levels/Hb
  • What can we do about Hb level and long term use of Ferrous Fumarate? Would an iron infusion be the answer?

 

Medical Record

Temporary tattoo on forearm. QR code links to medical record summary (it really does!)

This image gained some interest when I posted it on Twitter so I thought I would explain it’s genesis. From the outset I wish to make it clear that it is my solution to my specific needs. I’m not proposing it as a universal solution for quick access to medical information, more a stimulus for further thinking and discussion. (I’m also not claiming this as an original idea – there is at least one patient in USA who did it first)

The Trigger

In February 2017 I ended up in our local A&E (ER) Department as I had turned yellow. The first person I saw was a triage nurse who asked lots of questions about health conditions, history  and medication.

Next I saw an A&E Registrar. He asked the same questions but what would he have concluded if I hadn’t been able to fill in the details? He would have been confronted with a patient with a large scar up the midline, the hint of a stoma location and an appendectomy incision. He wouldn’t have known why the large scar was there and would have assumed my appendix had been taken out. He would be unaware that : I have Crohn’s disease; the attempt to remove my appendix had been aborted; I have Portal Vein Thrombosis resulting in additional veins growing in my esophagus (varices) and around by gallbladder; that my spleen is enlarged; or that the low platelet count is now normal for me. Valuable time could have been lost trying to investigate the problems that were already known about and being treated.

Do It Yourself

As a result of my A&E visit I wondered if there was a standard, minimum set of data that should be available? Was there a standard format for the data? I searched the internet and could find nothing. A good starting point would therefore be the questions the triage nurse had asked – personal details; current medication; current medical conditions; and any known allergies.

There are, of course, the likes of SOS Talisman bracelets which have some very basic information engraved on, or contained within, them. There are several subscription services which will hold your medical information and can then be accessed via a unique code you wear on a bracelet or dog tag, but these appear to be US based only and the data held was not in sufficient detail.  How feasible would it be to produce a standalone, wearable device?

Attempt 1

First attempt – using a USB bracelet. First task – decide upon data and format. I settled on two top level documents – i) a simple, overall summary plus ii) a detailed table that recorded each appointment or procedure. These documents were stored as pdf files and linked to various back-up documents such as laboratory or histological reports.

USB Bracelet

There were two problems :

The format of the data was such that it would still require a fair amount of time to wade through and understand the aetiology of ,and relationships between, the various LTCs. This was solvable but the second issue would be insurmountable.

In order to protect the system from viruses it is unlikely any NHS computer would allow the reading of an external USB stick. Time for a rethink.

Back to the Drawing Board

A couple of years ago I drew  a diagram to try and understand the aetiology/relationships that I mentioned above. I used the metaphor of a jigsaw as that is how my health appears to me. The penny then dropped that it would be a good way of showing a new doctor or surgeon the complexity of my case on just a single page. This illustration shows an early version of the drawing.

Early version of “jigsaw” diagram

…and then someone set me the challenge of making an interactive version that would open up the relevant documents or test results when you click on an element of the diagram. This would make the ideal interface for my medical record.

Basis of interactive medical record jigsaw

To get over the USB security problem I settled on holding the data on a server and then accessing it via a QR code. Initially I thought of using a dog tag style SOS pendant with the code engraved on it but I have yet to find a company that can do this as a one-off at a reasonable price. I could use a conventional SOS bracelet with a printed QR code inside but why not try a tattoo?

I didn’t want a permanent tattoo as it would not allow for any future changes. I opted to try making a temporary one using those kits that are readily available online. After a couple of false starts, mainly due to not reading the instructions carefully (it’s a man thing), I had a readable QR code tattoo. Where to stick it? The ideal position would be somewhere that is not generally visible but would be seen by an HCP. I chose the inside of my forearm, just above the wrist. Anyone looking to insert a cannula would be bound to see this and hopefully use a phone or tablet to scan the code.

(I’m counting on the HCP having the curiosity to try the link and once  opened realise the importance of the information available. You could call this a “leap of faith”)

Future Developments

Life would be so much easier if the NHS had a universally accessible records system that held all our medical details, linked to our unique NHS patient number (only needs a simple, unchanging tattoo). I can’t see that happening in my lifetime given the success of previous attempts.

Clearly I have no issues about the confidentiality of my medical data or I wouldn’t be writing/publishing this post. I know that many patients do and this needs to be taken into account. I am willing to trade confidentiality for the speed at which my medical record could be read should I be involved in an emergency.

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

Call My Bluff

It started with a routine calprotectin test in November 2015. The result came back at just over 100, which equates to “mildly elevated”. Subsequent tests continued the upward trend. A graph (I do love a good graph) is the best way to show the issue.
Calprotectin Test Values

To try and explain this ever rising trend I underwent a number of MRIs and colonoscopies but nothing untoward was seen and my gastros were stumped. Life continued as usual and my remission appeared to be continuing despite the confusing calpro figures. Could there have been something causing a false positive reading? I set about trying to find a plausible answer (that didn’t involve inflammation) but without success. In the meantime I was wondering why my Hb level was on the low side. Cue another graph…

Hb Values

It wasn’t until late 2018 that I went to see my gastro again, ostensibly to discuss the Hb level and a recent bout of “bathroom dashes”. Was it time to re-investigate the calprotectin issue. There was one section of my gut that hadn’t been seen by camera, namely the small bowel between duodenum and the anastomosis site (where my terminal ileum had been). I was booked in for a capsule endoscopy on 18th November. The full description of the procedure and the wait for the results can be found here (opens in a new window) – http://www.wrestlingtheoctopus.com/fantastic-voyage/ .

When the report was finally available my consultant emailed me to say that “there is some inflammation in the small bowel – it’s not terrible but it must be the source of the calprotectin. I  think it is probably enough to warrant treatment which we should discuss. Shall I arrange an appointment?” Yes, that would be a good idea. The date has come through for mid-April. A few more weeks wait before finding out the way ahead….

Then, last Thursday, I was rather surprised to get a phonecall from one of the IBD nurses. She told me that it had been decided, at the weekly virtual clinic (which I think must be like an MDT), to start me on Vedolizumab and they needed to book me in for a blood test and chest x-ray prior to my first infusion. I explained that this would be a major decision, as I had been Crohn’s drugs free for several years. My preferred option was to stay that way. I would want to discuss any new drug/treatment, at the forthcoming gastro appointment, prior to starting. (I have subsequently had an email from my consultant agreeing with this course of action. It appears that the IBD nurses had been very efficient in trying to arrange approval for the drug prior to the appointment)

Bluff

I’m now in a position that many other patients are confronted with – the end of remission. I’ve written many times about maintaining a laid back, positive attitude. Now my bluff is being called and I need to prove to myself that I can continue being calm and unstressed about my health.  So far so good. If my quality of life was being seriously compromised and I was unable to function properly then the decision to restart medication would be a simple one…..but it isn’t apart from…..

….an ache in my right hand side (URQ). It’s more annoying than being anywhere near painkiller territory. What could be causing it? As with most things #IBD related there is always a high degree of uncertainty. I consider this to be one of the major psychological burdens we bear.

I’m currently testing an IBD Self Help programme. It is broken down into modules which are completed over a number of weeks. I haven’t reached the “Pain” section yet so I’ve been relying on the old technique of visulaising the pain in an attempt to lessen its impact. That’s easier to do if you know there is only one cause but in my case it could be : the recurrence of the old ache around my anastomosis due to adhesions/scar tissue; gallstones; getting the balance of Loperamide/Colesevelam wrong; or the new kid on the block – inflammation. (“New” may be an incorrect description given that the first high calprotectin values showed up in May 2016).

Jump

You might think that I would jump at the chance of starting treatment but I’m not so sure. If inflammation did restart in 2016 then I have thrived so far without medication, do I really need to start now? I don’t want to be dogmatic and take a “I’ve been taking no drugs so I’m not going to start now” stance without good reason. A fellow Crohn’s patient asked what made me hesitant? I suppose the answer is “side effects”. I have not needed to educate myself on the progress of the MABs/biosimilars and their potential downsides. I have a lot of catching up to do and need to understand how the benefits would outweigh the risks.

I have however had experience of drugs damaging other systems or not working. I took Azathioprine for 9 years, with no apparent side effects, then my platelet count suddenly plunged. The concensus was that the Aza had attacked and permanently damaged my bone marrow which in turn reduced its ability to produce platelets. No more Azathioprine. I then tried Infliximab but after 3 doses my symptoms showed no improvement and I went under the surgeon’s knife (2010).

Platelet Count

Before the mid-April appointment I need to research Vedolizumab; ask other Crohn’s patients for their experiences and come up with a list of questions for my gastro. I’ve made a start……

Questions, questions….

I would usually leave my list until a couple of days beforehand. Given that this will be a major decision point in my Crohn’s experience I thought it best to start writing now.

  • What exactly did the capsule endoscopy show in the way of severity of inflammation and locations? Was it confined to the small bowel?
  • What was the gist of the discussion that resulted in proposing Vedo?
  • My QOL is good apart from an ache on my right side
  • Looking at the calprotectin levels it suggests that inflammation started somewhere between November 2015 to June 2016 but was not apparent on other tests
  • It has been 6 months between having the capsule endoscopy mid-November and the appointment. That suggests it does not need immediate treatment.
  • What if I decide not to go back onto Crohn’s medication at present?
  • How will Vedo help me now? …and in the long term?
  • Are there any side effects I need to know about? Are any of these relevant to my other conditions?
  • Ongoing monitoring regime? Frequency?
  • How good a measure would calprotectin be for small bowel Crohn’s?
  • Does the efficacy of Vedo differ as one gets older? Do the side effects change?
  • Is there the opportunity to have infusions at a local hospital?
  • Was there anything else of note from the capsule endoscopy? Could anything account for my low Hb?
  • What can we do about Hb level and long term use of Ferrous Fumarate? Would an iron infusion be the answer?

(If I have missed something obvious or you have beem in a similar situation then please leave a comment or respond on Twitter @crohnoid – Thanks)