In my neck of the woods, “did you hear the one about the ………” is normally a precursor to a witty comment, or a joke. However, constipation for NET patients is not actually funny – read on.
Certain types of Neuroendocrine Cancer are very heavily associated with diarrhea, either as a symptom of one of the NET Syndromes (yes there is more than one …..) or as a result of surgery or certain other treatments. Occasionally, these symptoms and side effects can all combine to make it quite a nasty side effect; and for some a debilitating condition.
I must admit to being surprised to find myself with feelings of constipation 4 or 5 years after my treatment and I’ve set about trying to find out why that might be. To understand why I’ve got to this stage, I needed to assess the history of my treatment and what I’ve changed in an attempt to improve my Quality of Life (QoL) – I feel there is a strong connection.
When I underwent my primary surgery (Nov 2010), my surgeon said it would take months for my ‘digestive system’ to return to some form of normality. I soon found out what he meant, I seemed to be permanently affixed to a toilet seat (plenty of reading opportunities though ….. every cloud!). I suddenly realised that I needed to start looking seriously at my diet. I did find some improvements by trying to eat things that would bulk up my stools vs trying to avoid things that might increase frequency (i.e. I wanted a reduction in frequency combined with a bulkier stool). Eventually, I settled on a regime for the first couple of years and to be honest, I didn’t need to change my diet in any radical sense. I was also determined not to take any medication (I was taking enough) and wanted this to work as natural as possible.
Things were still not ideal and in 2013, I even remember saying to my Oncologist that although I was never misdiagnosed with IBS, I felt like I now had it. I decided to attack this issue following professional advice from one of the eminent experts in the NET specialist dietitian world – Tara Whyand. My regime was now based on science (although it isn’t really an exact type!), that is checking the nutrient levels were OK (particularly ADEK and B12), taking supplements to help with deficiencies, tackling things such as malabsorption and diet.
The patient has a big part to play in any improvement strategy, so in 2013/14 I experimented more and completely changed my breakfast and lunch regime to oatmeal/porridge and toast which made a significant difference. I started to avoid eating large meals and I reduced fat consumption generally. I started taking probiotics to counter the effect of any bacterial imbalance as a result of my surgery (i.e. to combat SIBO). To keep track of everything, I set up and maintained a detailed diary to help identify things making it worse, tinkering as I went along. For those who are contemplating this sort of strategy, let me tell you – it takes time, effort and patience!
I was making excellent progress and my frequency was now once or twice per day – i.e. I felt like a normal bloke 🙂 Quality was not consistently good but I’m of the opinion, this may be something I need to live with. Stomach cramps were reduced, gas and bloating reduced (I’m fairly confident that was mainly down to probiotics). Happy days, my strategy has worked. I reduced my ‘visits’ by 300% without any medicine.
However …. have you noticed, there’s always a ‘however’ with NET cancer?
Although I’m generally well, I did start to think in 2016 that the balance was not quite right. My ‘visits’ were starting to last longer due to a consistent feeling of incomplete emptying – i.e. movement is OK but is followed by what seems like constipation. Additionally, I’ve had three major episodes of constipation and pain with no ‘movement’ for 24-36 hours. This happened in May, September and December 2016. My diary now has ‘zero’ entries in the daily bowel movements column, something I never thought I would see again in my lifetime!
When you’ve had small intestinal surgery, as many midgut NET patients have, this sort of thing can be extremely worrying. A bowel obstruction can be dangerous and I’d like to avoid additional surgery at this stage. The second occurrence was more severe and the pain lasted for 1-2 weeks. Fortunately, the issues were eventually settled and appear to have been a result of a sluggish system, although my scans will check to see if any issues in that area might have been contributing. (Note – lactulose (oral) is awful, will never touch it again!). I seem to remember a few years ago thinking constipation would be a luxury. I can assure you it isn’t – things need to keep moving, the opposite is much worse!
So … am I a victim of my own dietary regime success? Possibly. The GP who assessed my constipation and pain in September has told me to stop taking a Calcium supplement which was prescribed by the same practice at the beginning of the year (….long story but it was a counter to an osteoporosis risk that I have via long-term use of Clexane blood thinners – I no longer take this type of blood thinner). Calcium can slow your system down apparently. I already get enough calcium (and vitamin D) through the normal channels plus supplements, so it was a low risk action. I tinkered with my diet again, reducing my fibre intake and then built up again slowly. Additionally, I could probably do with more water! Perhaps my Lanreotide is having some effect too?
Is it just me with constipation issues? No, I carried out some covert searches on forums and found this issue has been mentioned numerous times.
I suspect we need science and some specialist NET research in this area, not sure the over the counter prescription is the optimum solution. I was therefore delighted to see a patient survey produced by NET Patient Foundation in conjunction with the Royal Free Hospital presented right in front of me in Barcelona at ENETS 2018. In this survey (which I remember completing), they found that the most self reported side effect of somatostatin analogues was in actual fact constipation (shock horror!).
As you can see from the picture, the survey results came along with some pertinent advice which you will already find in some of my articles co-authored by Tara Whyand who was involved in the survey results analysis. Interestingly, Tara commented on the constipation figure pointing out that the constipated feeling may in fact be confused with ‘incomplete emptying’ as I indicated I was experiencing above. I think she’s right.
I tend to be skeptical about patient surveys, for example, I simply don’t believe the average time for a NET diagnosis is 5-7 years as there are no checks and balances to investigate each claim. There’s a little skepticism in me about this particular survey, mainly because the results were not scientifically investigated i.e. were these self reported side effects actually caused by somatostatin analogues or something else?
However, many of the things reported in this patient survey are issues that patients tend to report, anecdotally in patient forums and verbally to their specialists. Some of them are already listed on patient information leaflets having been observed on the clinical trial for the drugs. However, they need to be reported to the drug manufacturer in order that they can investigate and then update their patient information leaflets if relevant. Moreover, doctors need to provide more support for patients who experience these issues. So, even if constipation (or incomplete emptying) is not totally caused by somatostatin analogues, at least we’ve opened up the dialogue.
p.s. I recently started taking Pancreatic Enzyme Replacement Therapy to combat some of the well known side effects of somatostatin analogues but not yet evaluated their overall impact with the above story. Read about this and a Q & A session with Tara Whyand in this article – click here
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