All posts by Crohnoid

calprotectin, Capsule Endoscopy, crohn's, Crohn's Disease, Crohn's inflammation, crohn's remission, GSTT, gsttnhs, IBD, Inflammatory Bowel Disease

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) – https://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)

Capsule Endoscopy, Crohn's Disease, endoscopy, GSTT, gsttnhs, PillCam, St.Thomas' Hospital

Fantastic Voyage

Fantastic Voyage – 1966 Sci-Fi Film

A New One On Me

Over the years I have undergone many different tests but the one that had eluded me to date was the Video Capsule Endoscopy (VCE). Maybe that’s the wrong to put it. Might be better to say that “so far I hadn’t needed one”.

So what changed? The last time I saw my gastro we discussed the apparent conflict between my feeling fit and well (good QOL), clear colonoscopies & biopsies but test results suggesting the opposite – calprotectin = 1300 ; Hb = 11.0 ; gradual weightloss >15kg. We had discussed this before. He had even asked a colleague to carry out a second colonoscopy in case he had missed something. Both of them were stumped so we agreed to park it. I thought now was the time to ask for it to be investigated further. The only part of my digestive tract that hadn’t been seen through a lens was the small bowel between duodenum and the point where my large and small intestines had been rejoined. He agreed.

We had previously discussed using a self-propelling endoscope but a “pill cam” sounded a less daunting solution. The concern about using a capsule was the risk of it becoming stuck at a narrowing. A radiologist would be asked to review my last MRI scan for strictures before the endoscopy was ordered. The cost of the capsule endoscopy procedure to the NHS is approx. £500.

All must have been well as I got a call from Endoscopy Appointments to agree a suitable date  for the procedure. A couple of days later the instructions arrived in the post. Very similar to having a colonoscopy but with none of the dreaded prep solution needed. The leaflet also listed the medications that would have to be put on hold. These included stopping iron tablets and Loperamide 7 days out. Iron tablets – no problem, but Loperamide – that would be the one instruction I wouldn’t be following. The thought of taking a trip to London having not taken Loperamide for 7 days was not even worth considering and would have put in jeopardy attending the Big Bowel Event at the Barbican on 16th November.

Monday 19th November 2018 – GSTT Endoscopy Department

After the glorious weather over the weekend it was a disappointment to arrive in London on a dull, rainy day.  The walk to the hospital took me past a number of foodstalls that simply reminded me that I hadn’t eaten since 8:30 the previous morning or drunk anything since 22:00.

Food Stall
One of the food stalls that have sprung up along the South Bank

I arrived at St.Thomas’ Hospital and, after a few minutes’ wait, was collected by the specialist nurse. She asked the usual questions :

“When did you last eat?” “8:30 yesterday”

“When did you stop taking iron tablets?” “7 days ago. Why is it so far in advance?” “They blacken the walls of the intestine and can give patients constipation”

I explained that I hadn’t stopped taking Loperamide as, for someone who relies on it every day, any thought of stopping for 7 days was a definite non-starter.

“What other medications are you on”  I went through the list

She outlined the procedure and I was able to ask the questions. The main one was “can the capsule be used to judge the condition of esophageal varices? If it can then should I cancel my conventional Upper GI endoscopy booked for the week before Christmas?”.  She explained that a capsule can be used to look at varices but it would need to be a different type from the one I would be swallowing today.

She then ran through the risks of the procedure. The main one being the capsule becoming stuck and the possible means required to extract it, the worst scenario being surgery. I signed the consent form.

There are several different makes of capsule system available which all work on similar principles. There are also different types of capsule for specific tasks. There is even one with a camera at both ends.

The more advanced ones have higher resolutions & frame rates and some communicate with the recorder unit wirelessly, without the need for sensors. St.Thomas’ employ the MiroCam system which  uses an array of sensors to pick up the signal from the capsule and send it to the recorder. (It’s the same unit that the BBC used for the live endoscopy that they broadcast as part of their “Guts: The Strange and Mysterious World of the Human Stomach” in 2012.)

MiroCam receiver and sensor array

The first task was to attach the numbered sensors in the correct positions around the abdomen. I can see why wireless communication is the future. (I wouldn’t normally post a selfie of my abdomen, in the interests of good taste, but to illustrate…..)

It’s not until you see a photo of your abdomen you realise the marks that have been left by surgery, laparoscopic not keyhole

Once they were in position the nurse produced the capsule and asked me to hold it between my fingers then pass it in front of the recorder unit. A bleep showed that they were now paired. As she had already input my information into the unit the display showed my name, hospital number etc.

The capsule – measuring 25mm long x 11mm dia.

It was time to see how easy swallowing a capsule would be. The answer – very easy. At 11:40 I took one gulp of water and it was on its way. The nurse switched on the live monitoring function and we watched it enter my stomach. To save battery power she then switched it off and I didn’t have the courage to try it myself in case I ruined the whole procedure. (…and what if I had seen something that, to my eyes, looked wrong? A surefire way of inducing stress)

As the unit has a 12 hour battery life she said the unit would switch off at 23:40 and I could then remove the sensors. The recorder unit would then need to be returned to St.Thomas’. I explained I was not available the following day so we agreed that I would take it back on Wednesday. Two weeks later the results should be available. When would I be able to eat and drink again? Coffee two hours after swallowing the camera and then a light meal after another two hours.

If it had been decent weather I would have set off on a long walk around London, as light exercise helps the transit of the capsule, but I decided I would rather get home in the warm. I took a short walk to College Green (the area outside the front of the Houses of Parliament) to see if there was a media scrum due to some new development with Brexit but there wasn’t so jumped on the Tube to Blackfriars and took the train home.

From Platform 1 at Blackfriars there’s a good view of the City and the new buildings going up

True to the nurse’s word the unit switched itself off at precisely 12 hours from the start of the procedure and I was able to peel off the sensors with remarkably little pain. The camera is not retrieved after the procedure (although there are some types that do rely on the patient “collecting” it and returning it  to the hospital for analysis).

Wearing the receiver unit took me back to having a stoma as it was hanging in the same position as the bag and the adhesive on the sensors gave a similar sensation to that of the stoma backplate.

Partial Update

The analysis of the video was due to take 2 weeks from handing the recorder unit back but nothing was forthcoming. I contacted my gastro consultant who said he would chase it up but after 4 weeks still nothing. I knew I would be visiting the Endoscopy Dept. again on 18th December, for my annual Upper GI scope (looking for esophageal varices related to portal vein thrombosis)  so I would ask then.

The endoscopy was being carried out by the head of the Gastro Dept. so I asked him whether he could find my video results on the system. He went off to check the status. By the time he returned I had been prepared for the scope – xylocaine spray (burnt bananas) to back of throat; mouthguard in position; Fentanyl injected. I was unable to speak. Luckily they had held off with the Midazolam so I was, at least, still conscious!

He told me that the video was being checked now but he had seen the first half of it and appeared to show Crohn’s in my small intestine. A nice Christmas present! I would have to await the full analysis before discussing the way forward. I emailed my gastro consultant to tell him the news. He replied that he would keep an eye out for the report.

…and with that the Midazolam was injected….zzzzz

When Will It Be Resolved?

The report took a long time to finally emerge and in another email my gastro said that it did indeed show that Crohn’s had re-surfaced in my small bowel in the form of mild to moderate inflammation. This was a disappointment as I had been in remission since 2011. An appointment has been arranged for 15th April to discuss the treatment options. If feasible I would favour the “do nothing” option. My thoughts on the end of remission and the questions I have for my gastro are in a separate post (opens in a new window) – https://www.wrestlingtheoctopus.com/call-my-bluff/

The Report Finally Arrives

In mid-March a printed copy of the endoscopy report, in glorious living colour, arrived in the post. Whilst I found it fascinating I struggled to understand exactly what the images were showing.

I was intrigued by the transit times : 15 minutes to make it through the stomach; 2 hours 52 minutes travelling through the small bowel; and 8 hours 51 minutes in the colon. These were classed as being “within average range”.

Luckily there was a summary report; unluckily there it was in black and white “…with a background of Crohn’s these are in keeping with mild to moderate active disease“.

Capsule Endoscopy Report – from esophagus to ileo-caecal valve
Crohn's Disease, NHS patient experience;, NHS treatment

A Patient’s Dilemma(s)

When 10th October 2018 arrived I had reached the 8th anniversary of my ileostomy. When I left hospital I had learnt two things about potential future surgery – the average time between operations for Crohn’s patients is 10 years; recovery time is improved by the fitness and weight of the patient but increases with age. Based on these two principles I set myself  the target of boosting my exercise and reducing my weight to around 80kg so that should I need to go under the knife again then I was in the best possible state for a speedy recovery.

Having taken the decision to retire early the exercise is mainly physical work around the garden, mucking out stables and taking long walks photographing London (when the opportunity arises). I’ve been achieving my targets and feeling “very well”. There have been a few “blips” along the way but these would come under the heading of EIMs (Extra Intestinal Manifestations – see previous posts). I’ll stick with “very well” from a Crohn’s point of view.

…and then a few weeks ago the unplanned visits to the bathroom started again. They had been happening sporadically over the 8 years, lasting a day or so on each occasion. so at first I wasn’t concerned about the latest occurrence but when it  reached the third day, without any improvement, it was time to take action. I emailed my gastro consultant to ask his advice. “Ask your GP surgery if they can carry out stool cultures to look for possible infections and C diff” was the reply. Yes, my surgery could do the necessary tests upon receipt of a fax!!! from St.Thomas’. (A fax? How last century. What’s wrong with an email?)

I went and saw a GP who suggested increasing the Loperamide to the maximum I’m prescribed – 12 daily. After a further couple of days everything returned to normal. When I went to collect the test results they were negative so, as usual, nothing to explain the problem. However one of the GP’s receptionists commented that she hadn’t seen me for a while and thought I didn’t look well. She suggested I should see a GP again. There was a slot that afternoon and after discussing my case  I suggested that a blood test might be a good idea (having not had one for over a year).

When the results came back there were no real surprises except for my Hb which was 112. When I checked my previous results I had been around this level for 2 years. To me it seems low and the Ferrous Fumarate I have been taking for many years has had no effect. (Is it not supposed to be a short erm measure to correct an imbalance?`) I had mentioned it before to both my consultants and GP and it did not seem to cause them any great concern.

Call it serendipity but I just happened to see a conversation on Twitter between an eminent Professor (who specialises in iron deficiency) and one of the BBC health programme presenters that tend to dumb down health issues for the masses. His point was that simply taking iron supplements was not the solution to the deficiency. I joined the conversation and mentioned my particular issues. I got a prompt and unequivocal reply – “You, sir, need treatment”.

…and so to my dilemma(s). How much store can be put in my feeling well and being able to carry out any activities I wish to undertake? Do I really want to undergo another range of tests in an attempt to explain, for instance, my calprotectin level of 1300? I’ve already been through  multiple colonoscopies, biopsies and scans – all showing no evidence of the Crohn’s having restarted. Is “do nothing” a viable option or would such a “pathway” not even be contemplated in some institutions? Do I want to start taking a new drug treatment for my Crohn’s just in case it is becoming active? The standard treatment would have been a maintenance dose of Azathioprine but that has already attacked my bone marrow and caused my platelets to plummet. The most likely choice would now be one of the biologics with the possibility of going through a long trial and error process until the right one is found.

…and my final dilemma is how to broach the subject of opinions I have read on Twitter, not even some medical web page, without giving the impression that I do not trust my present treatment.

Crohn's Disease

Top Trumps

The last blog was triggered by spotting an “I’m grateful for my IBD” post, this one is about another trend I’ve noticed – “Illness Top Trumps” or “my illness/condition is worse than yours”.

It’s played over SoMe, especially on Facebook forums. The “game” usually starts with a post along the lines of “IBS is worse than IBD” or “Ulcerative Colitis is worse than Crohn’s disease”. The ensuing discussions rapidly become very heated, abusive and always completely miss the point that two patients may have been diagnosed with a disease but experience its effects in vastly different ways. It’s QOL (Quality of Life) that matters. How much does the condition prevent you from living a “normal” life? Has it caused you any psychological issues?

The diversity of paths that each of us travels was made clear recently with the Twitter hashtag #MyIBDHistory. A friend of mine (and now fellow blogger – @bottomline_ibd) had this great idea (whilst idly daydreaming on a roasting hot afternoon) – could she condense her IBD history into just one tweet of 280 characters? Having succeeded she decided to release it on Twitter as the “#MyIBDHistory Tag Challenge”. Over 1,000,000 impressions later it has really taken off and resulted in many IBDers taking the challenge and posting their potted history.

The histories make fascinating reading and it’s very humbling when you realise just what some of the respondees have gone through, or are in the process of going through, under the catch-all umbrella of IBD. Each person has presented their story in a slightly different style and what has beem particularly gratifying is that the responses from others have been very supportive without a hint of oneupmanship.

There have also been positive reactions from HCPs who have also found the Tweets inspirational and informative. If you get a chance they are well worth a look. Personally I realised that despite having Crohn’s Disease for many years I have escaped lightly and for many years my QOL has been virtually unaffected.

There is another variation on Top Trumps based around “what I’ve got is so unusual that I’m very special”. These do not usually descend into conflict as who wants to argue with a special one?  (unless it’s Jose Mourinho). There’s a corollary to this – EIMs (Extraintestinal Manifestations). These may potentially have a far worse effect on QOL than the original disease. An EIM, taken in isolation, may be a relatively common issue but many patients will suffer from more, sometimes many more, than one EIM. By looking at their WHP (Whole Health Picture) the combination of multiple EIMs, together with the original disease, may add up to them also being “special”.

Confession time –  I have to admit that I’m not squeaky clean when it comes to oneupmanship. I have mentioned my surgery from 2010 many times (what do you expect from a Crohn’s patient blog) but haven’t been able to stop myself from quoting the surgeon who said it was “one of the most complex operations” that they had ever undertaken. There, I’ve done it again. I’ve tried analysing why I feel the need to mention this piece of information and why it is one of the few aspects of Crohn’s that makes me emotional. At first I thought it was a case of Surgical Top Trumps – “my operation was more difficult than your operation” but I’ve thought about it very long and hard and concluded it’s my sheer awe and surprise that a body and mind, my body and mind, could undergo such an ordeal, come out the other side, survive and thrive.

 

Crohn's Disease

Grateful?

Every so often a post or podcast appears along the lines of “Why I’m grateful for my IBD” and every time I see those words I wince a little. Am I swimming against the tide? Am I the odd one out here? There is not one aspect of this disease (or its EIMs) for which I have any sense of gratitude.  I’m not doubting  those who are “grateful”. I can understand that,  just like IBD itself,  there are many “flavours” of coping mechanism and if it works for them then fine.

I’m not denying that I have met some fantastic people from the IBD Community, both online and in person, but then I’ve also done the same through work and hobbies….and I haven’t needed IBD to give my life direction, focus or convince myself I have staying power.

Having said I’m not at all grateful I quickly need to counter that by saying neither am I resentful or regretful. The worse thing I could do is get into an “if only” mindset ie. “if only I didn’t have IBD I could have….”. I have thought long and hard about this subject and made my peace. I can’t think of many things worse for one’s health/mental health than living a life of regrets.

Have I always taken this attitude? The honest answer is “I don’t know. I can’t remember“. My medical memory was reset around 2009 and before that I can recall very little. I have now managed to fill in the physical events with the help of a medical records, photo library and my wife’s amazing memory for dates. I cannot do the same for my emotions or feelings apart from knowing I was sh*t scared of going under the knife but I don’t think I had any bitterness at having Crohn’s.

When surgery became inevitable in 2009 my emotions could have gone in one of two directions. I  would have understood if i had become very anxious, given my attitude to surgery, but instead I went into a very relaxed, laid back mode. I’ve manage to maintain it ever since. Clearly a prolonged period of remission has helped but a couple of serious EIMs could have derailed it.

IBD has certainly taught me a lot both about the disease itself and ways of living a relatively normal life despite of the everyday issues that it raises….but “grateful”? Definitely not.

Active Patient, hospital consultants, NHS patient experience;, NHS treatment

..but why the Octopus?

When I was looking for a book title and a name for my rejuvenated blog I wanted something slightly “off the wall”. Whilst I was writing the chapter about surgery looming I came across the consultant’s explanation of the CT scan he had in front of him. “It looks like you’ve got an octopus in there.” That set my imagination running and I pictured the scene in theatre where the surgical team had “released the octopus”, cut out the offending bit and then wrestled the remainder back, safely, into my abdomen.

Search for title over and seed of idea for book cover sewn.

As I neared the end of writing it occurred to me that there was a second octopus to be wrestled. It’s potentially a problem for all of us that suffer from chronic illnesses, namely, managing our route through the multiple tentacles of the NHS system with multiple consultants, procedures, specialities and clinics. Add to this the lack of a universal patient record system that can be accessed in different hospitals and it is apparent it’s not necessarily a simple process.

Life was simple when being treated by one gastro team at one hospital. It wasn’t until 2010 that another hospital entered the equation as my local hospital were unable to cope with the complexity of the forthcoming surgery and referred me to St.Thomas’.

This calls for a diagram –

My Personal Octopus

Some “tentacles” act in a co-ordinated manner; others seem to be a law unto themselves. Some tentacles communicate well with the others, unaided; others need a helping hand.

For example, if you’re booked to go for a procedure, let’s say an MRI scan, then it makes sense that your next gastro appointment is after the radiologist has written the follow-up report. Similarly, if you’ve had biopsies taken during a colonoscopy, you want the results to be available before you meet your gastro. This is not rocket science but if not co-ordinated then you simply end up wasting valuable appointments, consultant’s time and, just as importantly, your own time.

In the past I’ve let the system take its course but with mixed results so now I like to give it a helping hand. This is getting more difficult with the apparent demise of the dedicated medical secretary. For several years, when the frequency outpatients appointments and procedures had reached its height, I had the pleasure of dealing with a truly exceptional one. Let’s call her Sally. Any issues would be quickly resolved by a  simple exchange of emails. Sadly she left the NHS.

Nowadays I contact my consultant directly, but sparingly. I don’t particularly like doing it as I know he is already exceptionally busy. I can justify this approach to myself as in the long run time/resources will be saved by avoiding abortive appointments.

I suppose you could now say that I am “massaging the octopus” rather than an all-out Greco-Roman grapple.

 

 

 

Crohn's Disease

The Red Stuff

Friday 12th November 2010

At about a quarter past six I noticed that I appeared to be losing blood. I went off to the bathroom to investigate and found that he contents of my pouch had turned bright red. My immediate thought was that something had come apart internally and that I needed to get urgent medical attention. The level in the pouch was visibly increasing but not filling so fast that I would need to change it for a while.

My wife was already outside feeding the ponies so I went to explain to her and told her that I had a problem. I needed to get to hospital quickly. Knowing it was a Friday night and that A&E (Accident and Emergency) was likely to be busy we decided to call 999 rather than trying to organise a lift down there. I rang our neighbour to warn her what was happening and ask her to come and let the dogs out and give the ponies their late night haynets. We had no idea how long I’d be down at the hospital.

The ambulance turned up very quickly. Seven minutes from call to arrival. Once onboard the crew went through a series of tests and then we were off. No siren or blue lights. It wasn’t a very good ride in the back of the ambulance as they sway a lot and the country lanes around where we live are very twisty.

We arrived at East Surrey Hospital A&E at just after 7:15pm. One of the crew said: “we’re taking you into the Rapid Assessment Unit but don’t be fooled by the title”. His scepticism was unfounded and within 10 minutes I was laying on a bed having more tests and a cannula being inserted into my arm. I was then taken to the MAU (Medical Assessment Unit) but they were full so we had to wait in the corridor. This was probably the worst part of the experience because you couldn’t see what progress was being made in clearing the queue. I’m not sure what time I was actually wheeled into the Unit but it was probably around half past nine.

I was seen by one of the doctors and we went through my medical history and I explained what the current problem was. I got the distinct feeling that he wasn’t keen to explore my stoma himself and didn’t even suggest that we remove the bag to get a better look at it. He went off to ring one of the surgeons to see what should be done. At this point a friendly porter appeared to take me down for chest and abdominal x-rays. He remarked how busy they were and that it hadn’t been this bad since July. Surprisingly enough Friday and Saturday are not usually their busiest nights.

With the x-rays complete I was wheeled back to the MAU and it looked like I had missed my place in the queue. I was told that the plan was for me to be taken to the SAU (Surgical Assessment Unit). In the meantime the doctor came back and said that he needed to take an arterial blood sample which would probably take a couple of goes and would be very painful! Thanks for the warning. I needn’t have worried as he hit the artery first time and I had become very used to having needles, of varying lengths, stuck in me.

Rather than call for another porter the sister wheeled me down to the SAU herself. I was told that the doctor knew I was there and would be along to see me. It was now about 11:00pm and I’d still not seen anybody so my wife went to find out what was going on. The doctor was seeing another patient but would be with me shortly. A few minutes later she appeared and apologised that it would be necessary to ask me all the questions again. I had remembered to bring a copy of the discharge letter from St.Thomas’ which explained what the surgeon had done. As we had been unable to understand it completely, due to the long, medical terms, the doctor gave us a translation.

As she specialised in surgical cases she had no fear of removing the pouch. She then examined my stoma, inside and out, and came to the conclusion that the bleeding was external but I was right to have come down to the hospital. I asked her if she was considering giving me a blood transfusion but she said that unless my blood count was getting worse she was happy for me to be discharged. She did give me the option of staying in overnight if I was concerned but I decided that I would be OK. Other patients needs would be far greater than mine.

There was a short wait whilst the nurse removed the cannula and then I could get dressed. I rang my sister who very kindly came out and picked us up. We were home just gone one o’clock. Not what we had planned for our Friday evening. I was famished as I hadn’t eaten or drunk anything since 5:30pm. I grabbed some toast and a coffee and then went to sleep sitting up on the sofa.

What went wrong

When I saw the stoma nurse the following day she gave me a thorough examination and announced that I had developed an abscess below the stoma which I had not been able to see. The abscess had burst but “luckily” the blood had made its way into the pouch not my clothing.

colorectal surgery, crohn's, Crohn's Disease, IBD, St.Thomas' Hospital

…and another thing

A chance to combine the World Cup, gardening, Crohn’s Disease and colorectal surgery all in one post or maybe just a chance to do some navel gazing.

With the World Cup upon us once more my memory has been drifting back to when it was held in South Africa eight years ago and the situation I found myself in at the time.. A couple of posts ago I wrote about things I don’t/didn’t know about IBD and my unsated curiosity.  Here’s some other things that I’m curious about, bear with me.

In 2010 I knew I was heading for surgery. The pain in my abdomen/back was stopping me from getting a good night’s sleep. In May my consultant told me to expect  to go under the knife within 4 weeks at our local hospital. Preparations to get my life in order went into overdrive only to come to an abrupt halt when my wife and I were invited to attend an impromtu MDM with my consultant, his boss and their colorectal surgeon. The upshot was that the operation, or more specifically the recovery, was too complex for them to contemplate. They were referring me to St.Thomas’ in Westminster. You can imagine it was a bit of a bombshell.

A meeting with the surgeon at St.Thomas’ resulted in the date for the operation being set for the second week in October. (It couldn’t be September as he always went on holiday for the month!)

Strangely I started to feel a lot better and the pain improved greatly. I decided that one of the projects that had been on hold could go ahead – the construction of a pergola. It may not  sound very exciting  but it was quite a challenging piece of work, especially for someone about to undergo surgery.

Having designed the structure, ordered and collected the timber I spent many happy days and evenings digging the holes, cutting the joints and assembling the structure. It helped take my mind off the forthcoming operation. Although it was physical work it was also relaxing and, of course, tiring. Getting to sleep was not a problem.

A few days after starting….

The finished job

My constant companion throughout that period was the World Cup on the radio so when I heard the opening match between Russia and Saudi Arabia today (14th June) I was  immediately transported back to that hot summer, balmy evenings and re-ignited the questions…

In 2010 my guts were in a pretty bad way  – there were loops, fistulas and, probably most worryingly, my intestines had started to attach themselves to my back muscles (hence the back pain) and to vital organs.

One of the surgeons very kindly drew this diagram for me

The questions : If I was in such a bad way how did I manage to complete a physically demanding project. How much longer could I have continued without the “elective” surgery becoming “emergency” surgery. It was five months from when I had expected to have surgery to actually entering the operating theatre. It seems like a long time to wait.

I know I will never get an answer to my musings but once again curiosity is getting the better of me. I’ll just keep them on my lengthening list of “nice to knows“. Tune in next week for some more navel gazing (I’d like to commend the skill of the surgical team for still having a navel to gaze at.)

 

azathioprine, bone marrow biopsy, calprotectin, cholecystectomy, crohn's, crohn's diagnosis, Crohn's Disease, crohn's remission, Crohns Disease and Low Platelet Count; Azathioprine, esophageal varices, gallstones, IBD, jaundice, low platelet count, MRI scan, portal hypertension, portal vein thrombosis, PVT, stricture, thrombocytopenia, varices

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.

calprotectin, colonoscopy, Crohn's Disease, MRI scan, stoma, stricture

IBD Knowledge and Curiosity

They say with age comes wisdom. I fear I am the exception to that rule. What doesn’t come with age is knowledge. I proved this by spending the first 20 years from my Crohn’s diagnosis knowing very little about the condition. You could sum it up as : nobody knows what causes it; it’s incurable; you take steroids to keep it under control and get on with life; not many people have heard of it.

In 1998 there was the first mention of possible surgery to remove a stricture. I now needed to know what “stricture” meant and its implications. I started to take a little more interest but once I was safely weaned onto an immunosuppressant, and back to some sort of equilibrium, then my interest waned and life quickly returned to “normal”.

Another decade passed and then a routine blood test showed my platelets were dropping. As this was a known side effect of the immunosuppressants they were stopped.

In May 2009 a CT scan painted a complicated picture of both ileal disease and the suspicion that I was fistulating into other parts of the small bowel, possibly the sigmoid. My consultant put it in simple terms: “It looks like you’ve got an octopus in there”.

Fistula? I had no idea what that meant. It certainly sounded somewhat unsavoury. I started, again, to resign myself to surgery. After a brief, expensive, unsuccessful flirtation with Infliximab, the knife became inevitable.

As it approached I was confronted with new medical terms and there would be new skills to learn, for instance changing a stoma bag, but the knowledge I sought was still confined to my immediate needs.

Some of the basic information, that I’m assuming (hoping) newly Dx’d patients nowadays take for granted, had sadly passed me by. It wasn’t until 2012 that this was remedied by a couple of things, the first being my increased awareness of SoMe which lead to reading other patient’s stories. The second started a little more dramatically.

In mid-2012 I was rushed into our local hospital leaking upper GI blood. Once stabilised, given my history of Crohn’s, I was placed on the gastro ward. It was an eye opener. There were patients there who had admitted themselves as they were having a flare-up! Really? That was new to me. I had never even considered doing that. Could things really get that bad?

I became reacquainted with my old IBD Nurse who, sadly, had returned to being “just” a ward sister as she wanted to reclaim her private life. One quiet afternoon she sat on the end of my bed and we started chatting about Crohn’s disease.

She was surprised at my lack of knowledge and quickly realised that nobody had ever talked me through the basics. It was assumed that someone who had experienced the condition for so long must know all about it by now. I was guilty of this assumption myself as I knew no better. Our conversation was a wake up call to become better informed. Now my curiosity was awakened.

Six years on my curiosity is stronger than ever but I’ve hit a bit of a brick wall. It’s been the subject of previous posts and many, probably too many, Tweets. Although I’ve been in remission for several years I still undergo regular monitoring and this is where the problem lies. As usual I’ve drawn a diagram that represents my take on the situation..My case has been discussed at the Multi Disciplinary Meeting of one of the country’s leading gastro teams and the conclusions were : the colonoscopy findings outweigh the MRI findings in the colon. The small bowel was reassuringly uninflamed. There is no explanation for the raised calprotectin in terms of Crohn’s disease. Watch and wait.

From a health point of view I’m happy to “watch and wait” but my curiosity is sufficiently piqued that I would like find a logical explanation. It’s difficult to know what to do next. I’m rather hoping that by putting the details of my case out into the big world of SoMe it might just strike a chord with somebody – a fellow patient, an HCP or even a testing lab – and they will be able to point me towards a solution. Until then I have a feeling I will be returning to this subject on a regular basis.