Category Archives: Crohn’s inflammation

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 severoty 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)

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…..

Next steps

This is the follow-up post to “Where do we go from here?” posted on 3rd December 2016. (…and my record for future reference….)

Gastro Appointment – Guy’s Hospital 12th December 2016

As the date for the appointment drew closer my stress level increased. Not from the potential medical implications (though some might doubt this!) but the pure logistics of getting to London by 10:20am. It shouldn’t be a problem until you realise we have to rely on Southern Rail actually running a train. As it turned out my train was exactly on time but afterwards there were no more heading to London for 2 hours.

Having arrived at Guy’s Hospital with five minutes to spare I was greeted by a nurse who explained that the clinic was running 45 minutes late. I asked her to put a note on my file that I wanted to see my usual consultant (the top man). The wait increased to just over an hour when I heard my consultant calling my name. TIme to see if there were some answers. I produced my list of questions/comments.

We started out by discussing the outcome of the MDM. Had they been able to reconcile the apparent contradiction between the colonoscopy results and the MRI scan? No, they were at a loss to explain the differences.

The MRI report noted a 100mm stricture in the transverse colon and another in the ascending colon. Neither had been apparent from the scoping. The scan also showed adhesions, one of which was between  intestine and bladder. This could potentially lead to a fistula developing between the two. The tell tale sign would be gas when passing urine. That was a new one on me and certainly not something I had experienced so far.

The word that worried me was “fistula” but he pointed out that it was a possibility not a certainty.

The options left were to repeat the colonoscopy, or the MRI scan, but a barium enema, which is a test designed to look at the colon, would be preferable. (Not sure for whom. I still remember the last one over 30 years ago.) Rather than going straight to another procedure he suggested that we carry out a calprotectin test and if the result was the same or higher than last time (512) then it would be time to start practicising the buttock clench, so vital for the enema.

He asked how I felt generally. My answer was “very well” apart from every 10 days or so getting an upset stomach for half a day then back to normal. There was also an incident when I seemed to be leaking fresh blood but it only lasted a day and I concluded it was purely mechanical, maybe a burst blood vessel. He agreed with my conclusion.

I explained that I was keen to remain drug free having been taking no Crohn’s medication since 2010 (post-ileostomy). Was that an option with mild inflammation? Yes. The aim would be to start treatment early enough, to avoid surgery, should the inflammation worsen. (The knife is always a threat though). In line with my aim of not taking any new drugs I hadn’t been to see my GP about starting Questran for Bile Acid Malabsorption. I would remain on just Loperamide and adjust the dosage accordingly.

The one question I forgot to ask was “Does my reaction to Azathioprine (bone marrow suppression) suggest that some of other common drugs may be unsuitable?” That will have to wait for the next appointment.

I would be having my annual upper GI endoscopy at St.Thomas’ the following week and was wondering if we should also be monitoring my liver for stiffening (PSC). He said I should ask the endoscopist as it was their specialist area. The visit would also give me a chance to drop off the calprotectin sample to the path lab. I would then need to email my consultant in mid-January to get the results. Fingers crossed for <512. Clench.

At the end of the appointment I mentioned that I had eliminated a major element of stress by no longer commuting to London and have virtually retired. As I now had time in my hands I would be keen to do something for the IBD Community.

What is so nice about these appointments is that you never feel rushed. Every question gets a considered answer and all decisions are made jointly. Excellent.

After the appointment it was off to have lunch with a fellow IBD sufferer and then on to meet up with an old colleague for a coffee before attempting to get a train home.

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…..