Category Archives: crohn’s remission

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……

 

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)

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.

Christmas Treat

I’m convinced that blogging is good for you. It helps get some order into your thoughts by trying to write a coherent post.

My challenge today is to link (in no particular order) : an unresolved medical test; distinguishing between the effects of long term medication and the ageing process; another meeting with the surgeon and overcoming the stomach churning effect of burnt bananas.

Last week I emailed my gastro consultant to ask if I ought to have another calprotectin test as the last one was in January. Under normal circumstances I wouldn’t even need to ask the question but there is an issue regarding this particular inflammatory marker. The last result was high (896), a continuation of an ever upward trend over the last two years. The “issue” is that there is no explanation for this trend. I am feeling well and two subsequent colonoscopies have shown no inflammation. Is there any point in having a further test if we don’t understand the result? My gastro responded that I might as well go ahead but agreed it did seem slightly illogical.

I’ll drop the calpro sample in at St.Thomas’ next Friday (10th November) when I’m off to see the Upper GI surgeon to continue our discussion on having my gallbladder removed. By then  the results from my recent MRI Pancreas scan should have been discussed at their Multi Disciplinary Meeting with a recommendation on whether to go for surgery as soon as possible or leave it until it becomes neccessary. Surgery will not be straight forward for various reasons, one of which is portal hypertension/portal vein thrombosis.

The monitoring process for this last condition consists of an annual Upper GI endoscopy(ies) to look for any esophageal varices that have grown and then obliterate them with “banding”. For the last three years the procedure has been carried out in the week before Christmas so it seemed a shame not to continue the tradition. This year’s scoping is therefore booked for Tuesday 19th December. That gives me seven weeks to try and get over my aversion to burnt bananas. Just the thought is now making me feel queasy.

(If you’ve had an endoscopy you’ll know what I’m talking about; if you haven’t then I’d better explain that the Xylocaine spray, used to numb the throat prior to introduction of the camera, tastes of burnt bananas. Feeling queasy again!)

The “banding” is complemented by medication. Omeprazole – a proton pump inhibitor – to help protect the esophageal lining by reducing stomach acid. Propranolol – a beta blocker – to reduce blood pressure.  This latter drug has a number of potential side effects including tiredness, cold hands, feeling breathless, impotence.

In an ideal world I would be totally drug free but the next best thing would be reducing down to the bare minimum. I’ve already turned down Warfarin to thin the blood and not yet stared Colesevalam for bile acid malabsorption. I would like to stop or reduce the Propranolol if at all possible.

The above raises a number of questions. If I am generally feeling OK should I even be concerned that one marker is giving an unexplained result? Should I pursue it and ask for further investigation to be done to resolve the issue or should I just accept it as one of “life’s little mysteries”? How do I tell the difference between the side effects of Propranolol and the natural ageing process. Can I reduce the dosage from 80mg/day? What new questions should I be asking the surgeon? This should become more obvious once I know what the oucome of the MDM was. Unfortunately my gastro didn’t atted the meeting so couldn’t give me a heads up.

…and finally I must use my will power to overcome the burnt banana feeling.

Next update after the meeting with the surgeon.

Plan for the Worst, Hope for the Best

(In my experience this was not a typical colonoscopy. If you are about to undergo a similar procedure don’t let this post put you off. There is always the option of more sedation)

I said in a previous post that my last gastro appointment had been “interesting” but the offer of a colonoscopy “with an audience” would take that to the next level.

The last one was in July 2016 so why another one so soon?  I had also undergone an MRI scan and the results were very definitely at odds with the scope. There was also the little matter of the latest calprotectin test which showed a value of 896 (high). It was all pointing to my 6 years of drugs free remission coming to an end. I had resigned myself to restarting a drug regime and repeat surgery drawing closer.

Saturday 11th March 2017 – St.Thomas’ Hospital, Endoscopy Suite

The day of the scoping arrived. By 10:30 I was wristbanded and cannulated. I went off to change into a pair of very stylish paper boxer shorts  with a velcro flap up the back. Once I had donned  hospital and dressing gowns it was into the male waiting area until they were ready for me.

Eventually the Gastro registrar appeared and went through the procedure. He explained that he would start off and then hand over to the lead consultant when we were joined by the audience (via a video link). We agreed I would have minimal sedation as I wanted to be able to watch the images and ask questions.

He lead me down to the procedure room where I was greeted by the nurses. Whilst I was being prepped we discussed the use of azathioprine and potential bone marrow suppression. We also touched on Crohn’s and the link to portal vein thrombosis. I hadn’t realised that patients with active disease are more prone to clots such as DVT. Everything was now ready. The lead consultant came in and introduced himself.

I was asked to adopt a fetal position and, with a liberal handful of KY jelly, the scope started it long journey northwards. The image appeared on  a large screen above us. In the bottom left hand corner there was a feature I hadn’t seen before. The consultant referred to it as the “sat nav” and it showed the position of the endoscope in the colon.

It was not an easy journey as my sigmoid was tending to loop as the scope attempted to pass through. There was a lot of changing position – lying on my right side, left side or back – and lots of pressure put on my abdomen by one of the nurses pushing down. It was also a long journey as the aim was to go a short way into the small intestine past the anastomosis (the rejoin after my temporary ileostomy).

In the room next door my regular consultant was acting as chaperone to the group of international gastroenterologists who had come to St.Thomas’ to see “how we do it” in the UK. The screen on the wall flickered into action and two way communication was established. He briefly outlined my Crohn’s history and I was able to fill in some of the details. He explained the MRI issue that needed resolving and called up a copy of the report from my electronic file.

With a lot of perseverance, and gas to inflate the gut, the scope had reached the rejoin. I wonder whether the distraction of the video link caused me to relax and let the scope pass more easily. From then on the consultant gave a running commentary on what appeared on the screen. It was fascinating and informative. There was a debate between the 3 gastros as to which Rutgeerts score they would give my anastomosis. Was it i0, i1 or i2? The conclusion – i0 – no signs of ulceration.

Next they went through the MRI report and the scope was moved to the locations identified to see if any strictures were present. None found. One of the consultants remarked – “Scope 1 – MRI Scan 0”.

One thing that was apparent throughout my gut was a slight reddening (erythema). The scope was zoomed in to examine it and to look for any tell tale signs of active Crohn’s but found nothing.  The consultant decided to take a few biopsies. I had never seen this done on previous scopings so watched with a mixture of interest and cringing. What looked like a small crocodile clip appeared from the end of the scope and, under voice control, nipped into the wall of my gut. I waited for the pain but nothing, just a small trickle of blood. I suppose that is why you are given a mild sedative. He decided to take a deeper sample so the device went back into the same location and took a further bite.

By now the scope had been in for about 45 minutes and it was finally time for it to be withdrawn. Always a relief. But what about the raised calprotectin level? They would have to come up with a non-Crohn’s explanation for it. The lead consultant bade farewell and I was wheeled out to Recovery. Experience over. When else would you get a chance to listen in to 3 leading gastros discussing your case and with the evidence before your eyes?

Before leaving the unit I was given a copy of the Endoscopy Report, which I have reproduced below, and it included a possible explanation for the calprotectin result. We will have to wait for the biopsy results to be certain.

Endoscopy Report

I had started my journey (real journey so acceptable use of word) this morning expecting to be starting medications or at worst seeing surgery on the horizon. I was leaving for home with a much more positive outcome, hence the title of this post.

The only downside was the length of the procedure. Usually I suffer no side effects from a scoping but this time I ached a fair amount for the next 24 hours.

Two days later I went to see my GP to arrange for a bile acid sequestrant to be prescribed to treat BAM. I arrived expecting to take away just a prescription and ended up being referred to a surgeon, but that’s for another time…..

Crying Wolf

Crying Wolf (or maybe not)

I started writing this post a while ago but for one reason or another didn’t get round to finishing it. (My wife would say it’s a “man thing”). I’m not sure it will add greatly to the body of knowledge about Crohn’s but, from a purely personal level, it allows me to keep a record of my appointments and procedures.

I’m returning to a subject I’ve written about before but this time the effects are worse and have lasted longer, sufficient to make me very concerned.

On 5th May I had an annual check-up with my GP and had pre-empted the appointment with a full blood test. The results came back OK except for lymphocytes and platelets (expected). I emailed a copy to my gastro consultant and mentioned that I had been getting abdominal pain for the last few weeks and rushing off to the bathroom. He replied that I should have a calprotectin test and would have a sample pot sent to me (hopefully).

The symptoms are a pain around the midriff; extreme tiredness – so much so that I can get in from work, have dinner, then collapse on the sofa and wake up at eleven ready to go to bed; but most worryingly, and not wanting to get too graphic in a blog that may be read by non-IBD sufferers, let’s just say the phrase “through the eye of a needle” comes to mind.

I’ve been told told that if you can visualise  pain it is much easier to deal with. Mentally I lined up the suspects. The “upset stomach” could be from :

i) a virus picked up on the train up to London
ii) eating something dodgy (I did eat out in a restaurant in Highcliffe one day and the food was pretty disgusting)
iii) wearing a very tight belt whilst doing a lot of physical work

or the one that constitutes the “elephant in the room” – five years of Crohn’s remission was at an end

Ironically the last time I saw my Gastro consultant I had told him I felt very well and couldn’t see why we didn’t extend the gap between appointments from six to twelve months. I was now regretting it and had started to notice my weight was dropping and the ache around my anastomosis was getting more frequent.

I would have to see what the calprotectin test showed. The sample pot had still not arrived so I took it upon myself to get one from my GP, fill it with the “necessary” and drop it into the IBD Nurses at Guy’s Hospital.

The result came back on 14th June. My consultant emailed “Interestingly it has risen to 436” (previously 179) and suggested that a colonoscopy ought to be the next step. “Would I be OK with that?” Not a problem but I was starting to wonder if I was “crying wolf” as ever since I had dropped the sample in, I had started to feel a lot better. I think this must have been wishful thinking. Something had caused my calpro result to keep rising and my weight was still falling (down to 82kg from a high of 91kg).

The colonoscopy was duly booked – 12th July. I wondered how that would allow my small intestine to be seen. My consultant wrote back  that the colonoscopy would be able to reach just past the anastomosis, the most likely place to find inflammation if it had restarted. If the scope showed nothing then I would need further tests by which I assume he meant a scan. I’m sure he would not want to risk a Pillcam.

This post will continue after (tomorrow afternoon’s) scoping. One more sachet of Citrafleet to take………

The Colonoscopy

I’m not going to describe the whole colonoscopy process, just the things that made this one slightly different and the conclusions.

Firstly taking the prep timing has changed at St. Thomas’. For an afternoon procedure instead of taking both lots of prep solution on the previous day they are now split and the recommendation is to take the second sachet at 9:00am on the day of the procedure. This didn’t seem like a good idea, especially with a travel time of nearly two hours on public transport, I decided to take that second dose at 5:30am and I’m glad I did. It had only just finished “taking effect” at 10:30am when I was due to leave home.

Secondly, and this one would make a good subject for a fashion blog, the very flimsy paper briefs that one previously had to put on have now been replaced with some very stylish dark blue paper boxer shorts with a large slit up the back. Modesty prevented me from taking a selfie and posting it.

For the first time ever the nurse had problems finding a vein for the cannula. After two attempts with my right arm she handed me over to her colleague. Luckily she tried the other arm and was successful.

cannulaOne of the doctors came in to get the consent form signed and I explained that I wanted to keep alert throughout the procedure, so that I could ask questions, and mentioned that my weight was a lot lower than previous scopes. He decided to give me less sedative than usual and that worked fine.

Whilst my main GI consultant watched on, the doctor I had seen earlier started the scoping. As the camera made its way ever onwards it started to show mild inflammation in the colon but when it reached the anastomosis the inflammation disappeared. The doctor decided to see how much further he could get the scope into the small intestine, made possible by my ileocaecal valve having been removed during my ileostomy

Normally I don’t notice the movement of the camera, the air to expand the gut or the liquid used to clean the lens but that final push was the exception. I ended up being asked to roll onto my back which made it a little  easier. Once again there was no inflammation and with that the scope was withdrawn.

The conclusions were : ongoing, mild colonic Crohn’s disease but no evidence of recurrence in the neo-Terminal Ileum (the most likely place for it to reappear following surgery).  My consultant said that colonic Crohn’s would explain the high calprotectin result but he was clearly most concerned about the weightloss (down below 80kg for the first time since before my ileostomy) and sent off a request for an MRI scan.

By 15:30 it was time to leave St.Thomas’, clutching a copy of the report and accompanied by my escort , a fellow GSTT IBD patient who gave up her afternoon to help. Thank you. (I have since been able to repay the favour by agreeing to talk to some undergradute nurses about “Living with IBD”).

On the way out we called into the  MRI unit to see if it was possible to book a date there and then. Unfortunately bookings were done from a different location but the receptionist confirmed that the request was already on the system and marked “Urgent”. I should be seen within 2 weeks.

The Scan

After a couple of days I tried ringing the MRI Unit to find out if they had allocated a date yet, after all, if I was to be seen inside two weeks, surely I would need to be on the schedule by now. Disappointingly the answer I got was that they were working through the bookings “in order”. It didn’t make a lot of sense.

I left it over the weekend then tried again. This time the person I spoke to must have realised the urgency and I was given a date of Friday 29th July, at Guy’s, 12 days from the request going in. I would not need to be accompanied this time as there would be no sedation involved. I then received a letter for a follow-up gastro appointment to discuss the results – 5th September.

The day of the scan arrived. I made my way into the unit. It was newly refurbished and extended and had only been open a few days. The number of scanners fhad been increased from two to four.

You are asked to arrive early as there is a prep solution to drink. I knew what to expect – a thick, lemony liquid with the consistency of wallpapaer paste. I must remember to keep stirring it. But no, it was all change. I was given a one litre bottle of a clear fluid and a glass of water as a “chaser”. The nurse told me to drink a cup of the liquid every 5 minutes. She mentioned that it wasn’t that palatable and she was right. I must have managed to drink about three quarters of the bottle before it was time to be cannularised.

prepFor the second time in 3 weeks the nurse had difficulty in finding a good vein that would take the cannula tip all the way in. On the third attempt, using the other arm, it was finally in place.

I’ve described MRI scans, in detail, elsewhere in this blog so won’t repeat it all here. They are noisy machines so I was rather surprised to have fallen asleep towards the end of the procedure. I think it shows just how tired I have been recently.

A radiologist would interpret the results and have the report ready for my gastro appointment.

Harmatology

Just a routine, 12 monthly Haemo appointment. I didn’t have a list of questions because nothing had changed since my last visit. The doctor called up my records on her screen and said, in passing, “just to put your mind at rest – the MRI scan didn’t show anything unexpected, just some mild stricturing in the small bowel which had been seen before.” Interesting. I wasn’t aware of the strictures. Something to discuss on 5th September. To be continued…..

My blog is in remission…..

19th May – IBD Awareness Day – and my blog is in a sort of remission. It’s not cured as we all know there is no cure for blogging. Achieving the next big milestone of 50k hits may prove difficult if it goes into deep remission although the steady stream of Russian porn site spiders searching for “anaesthetic fetish” stories (yes, honestly!) may help get there.

The days of weekly, sometimes daily, updates seem like a distant memory. Clusters of outpatient appointments and procedures have been thinned out to 6 monthly intervals. The next scoping session will be  late October and there maybe a colonoscopy just before Christmas.

How does this make me feel? Mixed emotions oddly enough. I am obviously pleased to have reached some stability healthwise but I’ve grown so used to having to think about medical matters, given 2 or 3 years of intense medical activity, that it feels strange to have more time to devote to other aspects of life. Producing this blog has greatly helped me to get my health issues into perspective and the very regular appointments/procedures have proved to be a rich source for writing posts. This blog was set up for the specific purpose of recording “the rich vein of experiences along the Crohn’s highway and some of its detours.” I’m hoping that some of the content might just strike a chord with other Crohn’s sufferers and they will realise others understand what they are going through or maybe give them some warning of what could lie ahead.

My health related creative efforts have now been redirected into writing a book based on this blog. It’s nearing completion which, as my wife would point out, is the status of most things I start. (Anyone familiar with the Belbin Theory will understand the problem – low score in the Completer/Finisher category)

I still have some health concerns. The diagnosis of severe Bile Acid Malabsorption late last year has given a name to, and a reason for, the continuing dashes to the bathroom. Now I have this explanation I can visualise what the problem is, what is likely to exacerbate it and what can be done to manage it. I’ve become strangely relaxed about the issue.

My other health concern is keeping fit. Statistics show that if you’ve already had surgery for Crohn’s it is likely that you will end up under the knife again. The speed at which you recover is, in part, helped by being fit and up to weight at the time of the operation. My first operation was 1979, the second 2010 – a 31 year gap – who knows when it will happen again but I want to be as prepared as possible. My chosen regime is to walk whenever possible. I’m trying not to become too obsessive about the distance I walk each day but it does feel good when the app on my phone announces “All-Time Record” (currently 17.6 km).

17km
A days walking – from the Moves App

The impetus to keep walking is helped considerably by working in London. There are so many possible routes to get to and from work that it never becomes routine or boring. There is always something new to see and photograph. At 7:00am there are very few people about. I’ve set myself a challenge of posting at least one Instagram photo a day (account name = crohnoid) with either a new angle of an existing view or something transitory or a new experience.

Having rambled on so long it’s time for another appointment……………

Tuesday 5th May 2015 – Gastroenterology – St.Thomas’ Outpatient’s Clinic

The forecast said 50 mph winds and I could vouch for that. Crossing Westminster Bridge was “interesting” and made more so by the polar bear halfway across. I think it was the continuation of the PR stunt for SkyTV.

Bear
The Sky TV polar bear

This was to be a routine, six monthly appointment. I had prepared a short list of questions to ask.The visit started as normal. Get weighed. Wait. Go to Room 18 – see Registrar. Explain that I would like to see usual consultant for the sake of continuity. Return to waiting area. Wait for new message to appear on laser display screen. Go to Room 19. (Appointment time 2:50pm, in with the “right” doctor by 3:20pm. Not bad).

I knocked on the door, list at the ready, and entered. I got a warm welcome from my usual doctor who had a medical student sitting in with him.  My notes were on the desk. The file was so thick it looked like it couldn’t take one more sheet. “We need to get a new one of these”. I replied that I might just have the solution as I had written a book covering my medical history and experiences including the treatment at St.Thomas’. He seemed genuinely surprised. I assured him it was for real and that I was currently going through the final stages of editing and proof reading. I reassured him that he wasn’t mentioned by name and that it was all positive anyway!

That prompted a discussion on doctor/patient communication and how patients react to what they are told. He considered himself to be a good communicator (I’ll second that) but was concerned that without him realising it a seemly innocuous remark, made in passing, could take on far more significance to a patient. We then went on to discuss when and where it is appropriate to tell patient potential bad news. I mentioned that there were two things I wish I had been told about prior to surgery, and that they were on my list…….

1) I had been quite tired over the last couple of months and even the B12 injection three weeks ago didn’t seem to have made a difference. He suggested that next time I had a blood test I should get checked for iron and vitamin D levels. I did mention that last week I had walked nearly 50km to and from work and at lunchtime, so maybe I should be cutting back a little. That lead off at a tangent to the merits of exploring London early in the morning, or on a Sunday, when the streets were quite deserted. I couldn’t resist mentioning the Sky Garden (at the top of the WalkieTalkie building) that we had visited a few weeks ago. (There are a few photos at the bottom of the post).

2) As ever the ache around my anastomosis (join) comes and goes. It was worse after physical work or with a full gut. We had previously agreed it was probably just a mechnical issue as the recent colonoscopy had shown no sign of inflammation. He wondered if there might be some inflammation in a part of my small intestine that neither the colonoscopy or the previous endoscopy had reached. There was a technique, called a balloon assisted enteroscopy, that allowed the scope to propel itself right through the small bowel…….that’s enough thinking about that one. I asked if a capsule endoscopy would be better but he replied the disadvantage for some patients was the possibility of the capsule becoming stuck if there was a stricture along its path.

Maybe it was time for another MRI scan as the last one was three years ago. He recalled that it had suggested inflammation but the subsequent colonoscopy had shown nothing. He said that sometimes you could get conflicting messages with no explanation as to why the difference.

3) The plan going forward. The current monitoring regime consisted of six monthly calprotectin tests (with possibility of a colonoscopy if high reading), yearly upper GI endoscopies to check for growth of esophageal varices and six monthly appointments with haematology to keep an eye on my low platelet count/PVT. Were there any other tests I should be having that might be age related? “No.”

He set the next appointment or six months but I will fine tune the actual date, nearer the time, so that it is after the annual endoscopy. It will also be down to me to make sure the results of the calprotectin test are available.

4) BAM. I’m becoming increasingly convinced that Bile Acid Malabsorption is a subject that not enough patients, who have been through IBD surgery (ileal resection), know sufficient about. This was one of the two subjects I wish had been discussed prior to surgery.  It could be part of the pre-op assessment with either the Enhanced Recovery Nurse or the surgeon.

BAM BAM
Bile Acid Malabsorption

The other thing I wish I’d been warned about was ileus, or the lockdown of the digestive system, following surgery. I explained that unless you have suffered intense nausea you have no idea how bad you can feel. I wasn’t joking when I said that it was a good thing the windows on the 11th floor surgical ward at St.Thomas’ were non-opening. I really would have jumped! Both of them looked surprised.

5) This one was more out of curiosity – is there a link between shingles and having an IBD flare-up? In preparing my book, I had found a reference to the bad attack of shingles I suffered in 2005. As I read on I realised that a flare-up started shortly afterwards, breaking the remission I had been in for quite a while. He wasn’t aware of any link, in his experience, but there were common factors such as stress that might cause a trigger.

6) Getting involved. I’ve been cutting back on work recently. For the last six months I’ve only working three days most weeks. Whilst I have plenty to keep me occupied in my spare time I felt I could at least use part of it to give something back to the IBD Community but wasn’t sure how I could help. He ran through a number of ideas that they had been discussing at Guy’s/St.Thomas’ – research, patient panels – where they would like to include “lay” representatives. I asked him to bear me in mind for such an opportunity.

Appointment over and a chance to brave the high winds again. By now they had died down a little and the sun was shining so I decided to take a slight detour on my route back to Victoria and walk down the Albert Embankment. It’s not a walk I often do but will certainly repeat it.

Bride
A popular location for oriental pre-wedding photos
Film Crew
Film crew reporting on Election 2015
Lambeth
View from Lambeth Bridge, looking East

If all goes to plan the next post should be to announce the completion of my book. Still need a decent title though. Suggestions welcome.

Sky Garden  – photos

Shard
View of The Shard from the SkyGarden
Westminster
View up the River Thames towards Westminster
Gherkin
The Gherkin from the Walkie Talkie
St.Paul's
View of St.Paul’s Cathedral

 

Crohn’s Disease and Bile Acid Malabsorption (BAM)

I have covered this topic a couple of times before. Recently I have seen an increase in the number of questions and comments on IBD forums relating to BAM. I believe that increased awareness would help many Crohn’s and IBD patients.

I produced this simple slide, aimed at one particular group of at-risk patients. It’s self explanatory.

BAM BAM
Bile Acid Malabsorption

Here is an extract from a document published by NICE (National Institute for Health and Clinical Excellence)  – “Crohn’s disease is sometimes treated by ileal resection. The prevalence of bile acid malabsorption in people with Crohn’s disease in clinical remission who have had ileal resection is high (97%)“.

My own situation : ileal resection and stoma – October 2010; reversal – June 2011 and clinical remission ever since, confirmed by colonoscopy a fortnight ago. I had expected after the operation, and being in remission, that my digestive system would have returned to pre-Crohn’s normality. No. I would often suffer from an “upset stomach” with its attendant rushes to the bathroom. I kept asking myself, and questionioning on this blog, had I eaten something dodgy; picked up a virus or was I undergoing a Crohn’s flare?

I mentioned it at each outpatients appointment but it wasn’t until Autumn 2014 that my consultant suggested I should undergo a test to confirm if I was suffering from BAM. Of all the tests we get put through this must be one of the easiest. It’s called the SeHCAT test and involves swallowing a capsule containing a mildly radio active substance which dissolves and becomes a marker absorbed by your digestive system. You then have two x-rays, one week apart, and the x-rays the analysed to see how much marker remains in your system.

Anything less than 15% of the marker remaining is considered to be malabsorption. My own reult was under 1% which is classified as “severe”. There are drugs available to treat the condition. The most common appears to be Questran but some patients find it diificult to tolerate taking it. So far I have managed to keep it under control with good, old Loperamide.

However, since being diagnosed I have found my symptoms have greatly improved, not because of taking new/additional drugs but because I now know what my digestive system is up to and it’s not a sign that I’m about to descend into a flare. I feel a lot more relaxed if I do have an upset stomach for a couple of days.

My understanding of the BAM mechanism is that during the digestive process your stomach uses bile acid to break down the food you eat. When the acid/food mixture reaches the last section of the small intestine, the ileum, the acid is reabsorbed and passes back into the biliary system. If you no longer have an ileum the acid passes from the small intestine into the large intestine, causing diahorrea. (The ileum also absorbs vitamins, which is why it is important to supplement them, for instance having regular B12 injections)

I hope, by writing the above, I’ve managed to convince you to add BAM to the list of questions you ask your consultant/surgeon next time you see them. This is especially important if :

a) You have had an ileal resection and suffer from chronic diahorrea
b) You are about to undergo surgery which could involve ileal resection, especially the removal of the terminal ileum

Please feel free to copy the slide above and pass it on as widely as you can. It might just help fellow Crohn’s/IBD patients gain a better quality of life.

When I was doing the research for this post I came across this Research Proposal from Guys and St.Thomas’ Hopital. Maybe BAM really will achieve greater awareness in the not too distant future.

SeHCAT
SeHCAT Study