Category Archives: crohn’s complications

colorectal surgery, crohn's, crohn's complications, Crohn's Disease, gastroenterology, IBD, ileal resection

Pendulum

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

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

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

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

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

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

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

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

calprotectin, crohn's, crohn's complications, Crohn's Disease, crohn's remission, endoscopy, esophageal varices, gallstones, GI consultant, GSTT, gsttnhs, IBD, jaundice, MRI scan, portal vein thrombosis, PVT, upper GI endoscopy, variceal banding, varices

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.

BAM, bile acid malabsorption, cholecystectomy, crohn's, crohn's complications, Crohn's Disease, East Surrey Hospital, endoscopy, esophageal varices, fibroscan, follow-up letters, gallstones, GSTT, gsttnhs, Guy's Hospital, IBD, Inflammatory Bowel Disease, low platelet count, portal vein thrombosis, post operative ileus, PVT, St.Thomas' Hospital, thrombocytopenia, ultrasound scan, upper GI endoscopy, varices

Elective or Emergency?

2 Comments

I’ve often mentioned that I find blogging a great way of keeping objective about the various medical issues I encounter, hence this post which is a prelude to a meeting with a new Upper GI surgeon in London next Friday.

Why?

At the end of January I had a bout of jaundice. Whilst I turned yellow there was never any of the pain that usually accompanies it. I was in two minds whether to go to our local A&E but eventually gave in and made my way down there. To cut a long story short, a few weeks later I had a follow-up appointment with Upper GI consultant who suggested cholecystectomy (gallbladder removal). He was, however, concerned about some possible complications and for this reason recommended the surgery be carried out in a hospital with a specialist liver unit.

I exercised my patient’s right to choose which NHS hospital to be referred to and in my case the choice was simple – Kings College Hospital. I asked around and was given the name of an Upper GI surgeon who is highly recommended and has the added bonus of also working at St.Thomas’ and therefore access to my notes.

(There was a similar situation in 2009 when I found out I needed an ileostomy. The colorectal surgeon did not consider East Surrey Hospital had the facilities to cope with recovery from such a complex operation and so was sent to St.Thomas’ . I moved my outpatient care there in 2011.)

Preparing to meet the surgeon for the first time

The appointmet is set for 9:00am next Friday (22nd September). Before then I need to have a list of questions and any relevant documents. I am expecting to meet the named surgeon.

Just to complicate matters I will be seeing Haematology at Guy’s Hospital on the preceeding Wednesday. Will my medical file make it back to St.Thomas’ for Friday?

I have printed out the relevant documents from East Surrey Hospital- 2 x ultrasound reports + 2 x follow-up letters + last blood test results.

I’ve also included my “jigsaw” diagram which shows the various conditions we need to consider and the dates they were diagnosed or last tested – Crohn’s, PVT. BAM, thrombocytopenia, potential PSC + last blood test showed borderline thyroid.

What Shall We Talk About?

Reason for referral – the consultant at East Surrey was concerned that, in my case, cholecystectomy ran the risk of liver damage due to cirrhosis. He also noted my low platelet count and thought that keyhole surgery may not be feasible due to the scarring/adhesions from two previous laparotomies.

Latest test results – Fibroscan (testing for liver cirrhosis) – 2012 was 7.2; currently 7.8. Platelets – 96 (but have been as low as 56). Ultrasound scan showed one large gallstone but made up from many small ones. Weight – 78kg

Risks and Benefits of Surgery

Type of surgery – Keyhole or laparotomy? What factors will decide

Timescales – waiting time for operation; how long for surgery and recovery for either keyhole or laparotomy

Likelihood of liver damage?

WIll bile acid malabsorption become worse if gallbladder removed? (SeHCAT in 2015 showed severe BAM. I keep it under control with just Loperamide but have Colesevelam ready should it be required).

Likelihood of post-operative ileus? After two previous operations I experienced it badly?

Do I need to have reached a particular weight prior to surgery? (Prior to my ileostomy I was given 3 x Fortisip/day to reach a target weight of 85kg)

My Preferred Way Forward

To have surgery when it becomes necessary not as pre-emptive measure. “Emergency rather than elective”. Maybe that’s over dramatic and should read “Just-in-time rather than elective?” What are the risks of this approach? What signs will indicate that an operation is needed? How soon does action need to be taken once the signs appear?

The consultant at East Surrey Hospital said if I get jaundice again I should go to their A&E and then they will decide whether to  transport me to London by ambulance.

Anything Else?

Next upper GI endoscopy/variceal banding due December 2017

Bloating – have been like this since ileostomy/reversal. Any thoughts on likely cause? One or more of the 5 F’s?

…..should be an interesting meeting

azathioprine, crohn's, crohn's complications, Crohns Disease and Low Platelet Count; Azathioprine, low platelet count, thrombocytopenia

The Aza Conundrum

For nine years between (1999 to 2008), taking Azathioprine (Imuran) in varying doses between 150mg to 200mg/day successfully kept surgery at bay. Any Crohn’s flare-ups were dealt with by short courses of steroids. Then a series of routine blood tests showed that my platelets were dropping and it was concluded that Azathioprine was the most likely cause. I stopped taking it and within 2 years was undergoing major surgery.
I drew a graph to try and spot any correalation between the drug dose and the platelet count. I was expecting to see the count bounce back once I stopped taking Azathioprine and it did so the first time but when I started/stopped for the second time the platelets remained low. I’m guessing at that point the bone marrow was already damages. The only way to investigate further was to have a bone marrow biopsy.


In 2012 I went to see a haematologist and she explained some possible causes of a low platelet count :

increased destruction – the body is producing sufficient but something is destroying a number of them, possibly drug induced

decreased production – the body isn’t producing the right number in the first place which could be down to bone marrow failure.

We also discussed another factor – the implication of my enlarged spleen. Enlarged spleens can hold increased numbers of platelets and therefore the number released into the bloodstream is lower hence the lower count.

I had the bone marrow biopsy and afterwards received an email saying: “your bone marrow is being discussed with the histopathologist and we will write to you with the results. We will see you in clinic later in the year.” (I had to look up histopathologist – someone who carries out microscopic examination of tissue in order to study the manifestations of disease.)

I replied asking for an indication of what they had found. The response was that it would be easier to discuss the findings in clinic.
What did that mean? Nothing to worry about, it can wait, or it’s serious and we want to tell you face to face? Time for another short email along the lines “…I wonder if you could at least put my mind at rest that you haven’t found anything too serious….”

Within a few minutes this came back :
“We have reviewed your bone marrow in our multi-disciplinary meeting and there is nothing sinister to report. The findings suggest that your marrow is underproducing platelets rather than it being an immune cause that we had presumed secondary to your longstanding history of Crohn’s. This may be due to previous azathioprine use. We can discuss this in person and in more detail at your next appointment. In the meantime – I hope this reassures you.”

The appointment duly arrived. The haematologist started our conversation with: “Yours is not a simple case…..”. She had printed out the biopsy report that had been discussed at their MDM and the initial conclusion was that they were “in keeping with early/low myelodysplastic syndrome, histologically suggesting MDS-RCMD.” She knew that I would have looked this up on the internet and would have spotted the potential links with leukemia. That’s why the report hadn’t been emailed to me. [If I had Googled MDS I would have found the following – “The disease course is highly variable, from indolent to aggressive with swift progression to acute myeloid leukaemia (AML) in 30% of cases.” I think she was right to want to discuss it in person.]

She was not completely happy with this MDS conclusion because a bone marrow biopsy looks at two substances – the marrow itself and the aspirate (fluid). When the procedure was carried out the doctor was unable to obtain good aspirate slides as the blood in the samples kept clotting. After several attempts, but with little success, they had decided to concentrate on obtaining a good bone marrow core.

She described it as “like having a three piece jigsaw from which two of the pieces are missing.” At the next MDM they had discussed the results again and decided that, in my case, it was unlikely to be MDS but would recommend a further biopsy to get useable aspirate samples. “How would you feel about this?” I replied that I really wasn’t fussed. If it would help narrow down the diagnosis then the sooner the better. Next time they would use heparin, a blood thinner, with the sample needle as it should prevent the blood from clotting.

If the diagnosis wasn’t MDS then why the low platelets? The most likely cause was a combination of long-term Crohn’s and taking azathioprine. The biopsy had shown that the marrow was under-producing platelets rather than being over active and eating them up. I had been unaware that there was a potential link between Crohn’s and bone marrow.

The MDM had then gone on to discuss what the implications for treatment would be if it was/was not MDS. In either case the preferred course for treatment, at this stage, would be “do nothing” unless I was to have any procedures that could cause bleeding or that required surgery. A supply of platelets should be made available if either of these were needed. The difference in approaches would be in the monitoring regimes and we would discuss this further after the next biopsy results were available.

Back to reception to book up another biopsy and a three-month follow-up appointment.

In the meantime I had a routine gastroenterology appointment and I mentioned the need for a second bone marrow biopsy. Now you would think that a doctor who doesn’t bat an eyelid when sticking a camera up a patient would be pretty much hardened to all medical procedures, but the mere mention of the bone marrow biopsy was enough to make him squirm. He asked me if I was OK having the biopsy as it was the one test he really wouldn’t want to undergo himself! Strangely enough he wasn’t the first person to express that emotion.

A couple of weeks after the second biopsy I was back to see Haematology. When I went in for the pre-appointment blood test the phlebotomist asked me if I knew why she was also taking an “histological” sample. Since I didn’t know what “histological” meant I was of little help. (Of course I know now! It’s the anatomical study of the microscopic structure of animal and plant tissues).

The haematologist explained that one of the biopsy samples, which should have gone for histological testing, had either been mislaid or mislabelled so did not make it. This is why she had rung me a few weeks back to explain the situation. I’d forgotten about this. She had, however, looked at the other slides from that second biopsy and these were fine.

The missing sample had been discussed with the chief histologist and he suggested doing a specific type of blood test which had proved to be 60% effective in spotting problems, if there were any. The results would be available in a week’s time. The alternative was to have a third bone marrow biopsy but they didn’t want to put me through that again. I suppose I could have made a fuss about the missing slide but I couldn’t see what good it would do.

CURRENT SITUATION
When I saw the haematologist in February 2015 she described my bone marrow as being “a four cylinder engine running on only three” and therefore not delivering the right quantities of platelets.
What is the long-term prognosis for the thrombocytopenia? It should not affect the other issues I have – Crohn’s, potential PSC, PVT, but I must avoid the use of azathioprine in the future. It’s important not to get hung up on the numbers as I am asymptomatic and do not bleed profusely if I cut myself.

What could have caused the low platelets? There are no signs of marrow abnormalities that could point to a more sinister conclusion (leukaemia), therefore the cause is most likely to be drug-induced long-term use of azathioprine. The official description was “asympomatic thrombocytopenia. Therapy related secondary dysplasia on bone marrow morphology – most likely due to Azathioprine”.

Do I need treatment? No, but must look out for any signs of starting to bleed more easily. Monitoring? Six-monthly blood tests and outpatient appointments (which subsequently became annual and then dischargeded).

WHAT NEXT?
A couple of new issues have arisen – borderline thyroid level + possibility of cholecystectomy – so it seemed like a good idea to book another appointment with Haematology to discuss further. Watch this space

cholecystectomy, crohn's, crohn's complications, Crohn's Disease

Should It Stay or Should It Go?

At the end of April I recorded a visit to London to see my gastro consultant (see post “50 Shades of Grey”). We discussed the “blip” last February  when I turned yellow. The keywords being – local A&E, jaundice, gallstones. There was the added complication that my local hospital was taking care of this issue. Split responsibilities and patient records tend to slow the treatment process down.

Back in November 2016, at my annual Upper GI endoscopy, I had asked if it would be a good idea to have another Fibroscan, a specialist ultrasound scan that measures liver stiffness (cirrhosis). The last one had been in November 2012 and it would be nice to know if there had been further deterioration. It was agreed that it would be a good idea but the request form was never issued.

The need to know about worsening cirrhosis had now become more urgent. My gastro filled in the request form as I watched. A few days later the appointment came through – 4th September. That long? Four months just for a very simple 5 minute test?

Friday 7th July 2017 – East Surrey Hospital Outpatients

When the “blip” happened I had gone down to our local A&E and spent the night there being monitored. Afterwards there was a follow-up appointment with an upper GI consultant locally (see post called “Time Bomb No.2, please” – April 2017). A further ultrasound scan was ordered and he said he would be happy to see me again to discuss the results. The scan took place on 12th May, the day NHS IT systems were hit by a virus. Usually I would expect to take a copy of the report away with me but not this time. I let a month go by then asked my GP surgery if they had seen the missing report. No, but a day later they had obtained a copy and rang me to let me know. (They provide an exceptional service)

The report stated “could suggest chronic cholecystitis” (inflammation of the gallbladder). Dr. Google was divided upon this condition. Some sites declared it serious and in need of treatment straight away; others said that if the patient was asymptomatic then it could be left alone. I rang the consultant’s secretary and she organised the follow-up appointment for 7th July.

(I had been under the impression, after the first appointment, that the consultant was going to discuss the case with my “doctor” (gastro consultant at GSTT) and would make a direct referral to Kings College Hospital Liver Unit. Wrong on both counts. The “doctor” he meant was my GP and the referral would be made via the GP after the follow-up scan. Doh! I had assumed that the process was already under way.)

I asked him specifically what concerns he had that would require surgery to be carried out in a specialist liver unit. He replied that they were : liver cirrhosis, low platelets, the adhesions from previous laparatomies and a possible bleed. No arguing with that. He also said that if I had a recurrence of the jaundice or pain in a specific area then I should go to our local A&E and they would take the decision on whether to treat me or transport me to London. We left it that a letter would be sent to my GP asking him to make the necessary arrangements. I thought it might be best to discuss it with my GP rather than just let the process take its course.

In the meantime I wanted to find out if there were any other hospitals I should consider along with KCH so I posted a question on FB in the PSC and BAM support forums. A number of other units were suggested but KCH came out well and it would be easier for me to get to.  Then I was recommended a consultant who works between St.Thomas’ and KCH. This would be the best of both worlds as they would have access to all my medical notes. I now had a name and contact details for the doctor I want to be referred to.

Tuesday 19th July 2017

My GP rang  this afternoon and we agreed that he would put the referral process in motion. He was of the opinion that this could have been done hospital to hospital.

Whilst I’m feeling fit and in no pain then I’m quite happy to leave the gallbladder well alone but I want to be prepared in case it all starts to go wrong.  It should be an interesting conversation with the consultant/surgeon as to his recommended way forward, especially when we start to discuss complicating factors – the minor annoyances of PVT, PSC, Splenomagely, thrombocytopenia and BAM.  I’m sure he would be interested in the results of the Fibroscan.

(That’s quite a list of complicating factors. As I’ve mentioned before it could well be a winning hand in “chronic condition top trumps”)

 

azathioprine, BAM, bile acid malabsorption, biopsy, bone marrow biopsy, calprotectin, crohn's, crohn's complications, Crohn's Disease, esophageal varices, fibroscan, gallstones, IBD, jaundice, liver biopsy, low platelet count, MRI scan, portal vein thrombosis, PSC, PVT, thrombocytopenia, varices

Fifty Shades of Grey

Let’s get my latest appointment out the way…….

Monday – 24th April 2017 – Gastro Appointment, Guy’s Hospital

I hadn’t planned this appointment, neither had my gastro consultant but the booking system had other ideas. It must be set to auto repeat every 6 months and doesn’t take into account any ad-hoc appointments in between. I had intended to cancel but I’m pleased I didn’t as there were things that needed talking through. I produced the obligatory list of questions (responses in red) :

1.    Biopsy results (from 11th March colonoscopy) – the report from the path lab said that the biopsies were consistent with “quiescent” Crohn’s disease. This result was about as good as it could get. Once you have the disease there will always be some signs of it, even when in remission.

2.    Explanation of rising calpro levels given result of recent colonoscopy?       – to be honest, he simply did not know what was causing the raised calpro levels. He had been concerned that something had been missed during a previous colonoscopy hence the repeat, in March, carried out by his trusted colleague (and watched by an audience of trainee, international gastroenterologists).

3.    If calprotectin tests not giving meaningful pointer to Crohn’s activity what monitoring regime should we adopt? – I had anticipated what the answer would be and I was right. If you start to feel the Crohn’s is becoming active then we’ll take it from there.

4.    The upper GI surgeon (Professor), who I saw locally (see previous post) regarding gallbladder removal, was talking about referral to a specialist liver facility “in case of needing a transplant” arising from complications during the  cholecystectomy (sounded very drastic) – my gastro agreed that I should be referred to a specialist unit in view of my concurrent conditions. The most likely unit would be the one at Kings College Hospital. The issue of needing a transplant would be a last resort if something went very wrong during the operation. He typed a letter to the Professor suggesting that the referral should go ahead.

5.    Awaiting ultrasound appointment (locally) to look at liver, gallbladder, bile duct and portal vein – noted. No date as yet.

6.    Pros and cons of having gallbladder removed? – to be discussed with specialist liver facility. Even if I decide not to have surgery I would at least be on their radar so that should I end up having another jaundice incident, that needed urgent resolution, they would already be aware of my case.

7.    Fibro-scan to see if liver cirrhosis progressing – he filled in the online booking form to request the scan. (Date now through – 4th September)

8.    Current weight 78.2kg. The target weight set prior to my ileostomy (October 2010) was to get UP to 90kg, which I achieved with the aid of 3 x Fortisip (300 calories each) per day. My subsequent decline by 12kg has been quite a loss – whilst I felt fit at this reduced weight it was a lot lighter than the previous target weight. I thought I had better point it out. We would continue to monitor.

9.    Next steps – ultrasound scan; fibro-scan; no further colonoscopies at present; follow-up appointment in 6 months time (the booking system should already be doing that); yearly endoscopy at Christmas to check varices + appointment with specialist liver unit.

50 Shades of Grey

For 30 years I really didn’t want to delve too deeply into my health. It was clear, black and white, I had Crohn’s Disease (after the usual “is it IBS debate” within the medical profession). It was centred mainly around the join between my small and large intestines (a common location) and had caused a stricture. Despite this I spent many years in remission.

In the last few years my medical life has become more complex with new issues arising. Most of them  are very definitely not black or white.

It started with the dramatic fall in my platelet count that has never recovered (thrombocytopenia). Was it really as a side effect of the Azathioprine I had been taking for 8 years? You would expect it to have bounced back when I stopped the drug. Is it related to my spleen becoming enlarged? Could this be the cause of the platelets issue instead? Two bone marrow biopsies later and there is still no definitive answer.

Next there was the incident where new blood vessels had grown in my esophagus and then burst. A subsequent x-ray showed a blood clot had formed in my portal vein (thrombosis) which had increased the pressure in the veins higher up. Most likely cause of the clot? The current theory is it’s the result of peritonitis following a perforated bowel operation in….1979! Really? That long ago? Apparently there is always a risk of PVT during any surgery. I’ve also seen research that once you have Crohn’s patients you are more susceptible to clots.

As a result of the above incident it was suggested that I might have Primary Sclerosing Cholangitis (PSC) I had a fibro-scan on my liver which showed signs of cirrhosis. What caused that? It certinly wasn’t alcohol related as I drink very little. Is it linked to that blood clot? I then had a liver biopsy and, thankfully, it showed no PSC.

What caused my recent jaundice incident last January? I felt no pain whatsoever only violent shivering and turning yellow. It must have been gallstone related but this is usually accompanied by the most excruciating pain. Again there is a potentially a link between Crohn’s and the increased likelihood of developing gallstones.

…and so to my latest consultation. Yet another puzzle – how to explain a rising calprotectin level with a colonoscopy, and biopsies, that showed I’m in remission.

…and not forgetting the reason I had that second colonoscopy – to see if there was any evidence of the strictures which showed up on the MRI scan, which there wasn’t. Another conundrum and one that had also happened back in 2012.

…and, of course, there’s the biggest grey area in the room – what causes Crohn’s Disease?

I’m not going to lose any sleep over the above. What’s done is done. It’s more out of curiosity that I would like definitive answers. In an ideal world I’d get a gastroenterologist, a hepatologist and a haematologist in a room together and let them reach a concensus on likely causes. That isn’t going to happen anytime soon…….

…but maybe the combination of conditions would at least give me a winning hand playing “Illness Top Trumps”

 

bile acid malabsorption, blogging, colonoscopy, crohn's complications, Crohn's Disease, IBD, IBD Awareness, MRI scan

Where do we go from here?

At the moment it makes a change to write a post not connected to the #HAWMC (Health Activist Month Writer’s Challenge) that I’ve just completed. Having said that, there is still a link because I have mentioned in a couple of those posts that I find blogging therapeutic. It helps me to be objective and get things straight in my mind.

This post is therefore primarily for my own benefit but any thoughts/comments/questions welcome.

Background

I’m off to see my gastro consultant at Guy’s Hospital in just over a weeks time (12th December). I’ve already started getting my list of questions ready but I want to make sure I capture all the relevant details. I’m expecting us to agree next steps given my recent test/procedure results.

Since my reversal operaion in June 2011 I’ve been taking no Crohn’s drugs at all and everything has pointed towards me being in clinical remission. I really don’t want to take any more medication than the current Omeprazole, Propranolol, Loperamide and iron tablets  that I am on for PVT (Portal Vein Thrombosis).

When I my consultant, almost a year ago I said “I feel fine. I can’t see why we shouldn’t stretch these appointments out to yearly intervals.”  I don’t know exactly how long it was before I started to regret it, probably about three months, as the bathroom dashes had returned. As ever, with IBD/Crohn’s, it’s not easy to pinpoint what has caused the change and now that I have the addition of Bile Acid Malabsorption to consider it makes it even more difficult.

I tend to discount stress as I like to think I manage it quite well. At that time I was commuting to London, or more precisely Canary Wharf, and the travelling was always unpredictable, mainly due to the truly appaling service provided by Southern Rail and the frequent RMT strikes. To be sure of getting a train meant getting up at five o’clock in the morning. Maybe stress did play its part this time. My wife has said I seem a lot more relaxed now that I’ve given up work. (I decided to semi-retire at the beginning of November but I’m open to offers for short term assignments.)

The upshot was that I emailed my consultant and explained the problem. He suggested a calprotectin test (stool sample) and we would decide what to do next depending upon the result. After three weeks (28th May) the test report came back showing a considerable jump upwards to just over 400, suggesting active inflammation.

A colonoscopy was arranged – 13th July – and the finding was “ongoing mild colonic crohn’s disease. No evidence of crohn’s recurrence in the neo-terminal ileum.” The previous scoping (February 2015) noted “mild, patchy erthema (redness) throughout the colon” but concluded “quiescent (inactive) crohn’s disease.”

Because a colonoscopy can only just reach into the small bowel an MRI scan was booked  to look at my small bowel. I didn’t have to wait long – 29th July with a follow-up appointment on 5th September to discuss the results. Suprisingly, the MRI showed a stricture in my colon even though the scope didn’t. Very strange. This conundrum would be put to the Gastro Dept’s next MDM (Multi Disciplinary Meeting).

The MRI scan also showed adhesions, which are usual after surgery, but I would like to know a bit more about locations. I’ve been getting an ache around ny anastomosis for a number of years but it seems to be worse in the last week or so. This may be down to lifting a couple of “heavier than they looked” objects. Yes, I know it was stupid but male arrogance etc…..

I’m intrigued to know how the MDM reconciled the apparently contradictory colonoscopy and MRI scan results? I would have thought the camera results would take precedence. I also need to understand if the adhesions, on the scan, are just confined to my rejoin (terminal ileum). We’ll talk about their conclusions on 12th December.

We also discussed the large jump in calprotectin level and he asked me to repeat the test to check whether this was a rogue result. Unfortunately the result, when it came back, was even higher.

Looking at the calpro graph it’s apparent that somewhere between November 2015 and May 2016 the inflammation restarted.

calproI mustn’t forget to mention that a few weeks back I was having a “do I call an ambulance” moment when I started loosing some blood from where the sun don’t shine (no, not Manchester). I concluded that due to the fact it was bright red it must be very fresh and the result of surface injury and did not warrant 999. By the next day I was fine again.

Over the last few weeks my digestive system seems to be back on an even keel so is it possible/advisable to continue without medication even though mild inflammation is present? Is any damage done by not taking medication for such a long time? Does the calpro trend suggest that the inflammation is getting worse? I have noticed that I can sometimes feel the action of peristalsis across my middle which I’m assuming is matter passing along the transverse colon. Maybe this ties in with the mild inflammation.

I will mention that I have not talked to my GP about Bile Acid Malabsorption as my digestive system seems to have returned to normal with just the odd blip every 10 days or so. Is this return to normality as a result of no longer commuting to London?

I’m booked in for an upper GI endoscopy on 21st December to monitor the growth of varices in my esophagus.  I’m wondering if we should be doing any further monitoring of my liver to look for worsening of the cirrhosis. Add it to the list.

I just need to turn the above into a succinct list  and I’m ready for the appointment. I just hope the newly announved ASLEF ovetime ban doesn’t stop the trains from running.

It should be an interesting session on 12th.