Did you hear the one about the constipated NET patient?


constipation
did you hear the one about the constipated NET Patient?

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 and worrying side effect.

I must admit to being surprised to find myself with feelings of constipation from around 4-5 years after my treatment and I set about trying to find out why that might be. To understand why I got to this stage, I assessed the history of my treatment and what I 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 naturally 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 ‘at risk’  nutrient levels were OK (particularly ADEK and B12), taking supplements where necessary to help with deficiencies, and 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 seemed to make excellent progress with ‘frequency’, which is down to 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 are reduced, as is gas and bloating reduced (I’m fairly confident that is mainly down to probiotics). Happy days, my strategy has worked.  I reduced my average daily ‘visits’ by 400% 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 several episodes of constipation and pain with no ‘movement’ for 24-36 hours. This happened in May, September and December 2016.  Had 3 more episodes in 2017 and 2 so far in 2018.  My diary now has numerous ‘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 particularly severe and the pain lasted for 1-2 weeks. Fortunately, the issues eventually settled and appear to have been a result of a sluggish system, although my regular scans 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 2016 told me to stop taking a Calcium supplement which was prescribed by the same practice at the beginning of that year – Calcium can slow your system down apparently (…..the calcium is a long story but it was a counter to an osteoporosis risk that I have due to long-term use of blood thinners).  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? In 2018, I changed my bread to one with less fibre as a test, nothing to report so far.

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!).

Tara poster
The poster as presented at ENETS 2018 – featuring Tara Whyand

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.

self reported survey
Abstract posted at ENETS 2018

I’m always skeptical about patient surveys as they tend to be gathered from a very small percentage of the actual patient population and tend to be sourced from those with the worst issues (something I call ‘situating the appreciation’).  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 I know patients tend to talk about anecdotally in patient forums. Some of them are already listed on patient information leaflets (often without patients knowing I might add) so this is further confirmation of the official trial results.  Wide variances or new unlisted issues probably need looking at though.

Despite some of these side effects being listed, I believe 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 this survey should start up a 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

Thanks for reading

Ronny

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17 thoughts on “Did you hear the one about the constipated NET patient?

  1. Alan March 17, 2018 / 21:13

    I’m now a year in from having largely sorted this problem out, and I recommend anyone to try this. Quite simply, I base almost my entire diet on fruit (fresh or dried), nuts, veg, and salad, and increased motility is almost inevitable. I’ve also reduced carb intake and dairy radically, which I think help. I have not had to use stool-softening Lactulose throughout the whole time I’ve made this change, which I’m really pleased about.
    As well as all these benefits, I’m on at least double (sometime treble) the recommended 5 portions of fruit/veg per day, and this cannot be a bad thing in general health terms.
    I’d be interested whether anyone else finds this beneficial

    Liked by 1 person

    • Ronny Allan March 21, 2018 / 09:51

      Alan – as you said in an earlier comment “Everyone’s different” and I think this is very true with NET patients. Personally, I like to make sure I have a balance of proteins, carbohydrates and fat (yes you do need some although I have cut down ….. there’s fat in vegetables apparently!).

      Like

  2. Dori April 27, 2017 / 00:17

    Ronny, and all others dealing with constipation, I had really bad constipation issues for more than 20 years. Doctors recommended all kinds of things from bulking agents to Senna to prescriptions. I blamed in on being hypothyroid, and that probably had something to do with it. Changing to a natural thyroid product helped a little bit, but not much. The biggest help for me was to take a healthy dose of magnesium citrate every single day, mid-afternoon. I take one called Calm Magnesium, a powder that is mixed in a glass of water. It has turned my life around and I hardly ever have an episode of constipation. That brand may not be available in the UK, but surely your pharmacy has something similar. You might give it a try and see if it helps. Good luck!


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    Liked by 1 person

  3. edebock October 20, 2016 / 03:31

    In spite of maintaining a high fibre diet, I have had to resort to using a stool softener on a regular basis. Though my calcium supplement may contribute to constipation, it’s likely that the main cause is my blood pressure medication and/or my monthly Sandostatin injection. Since those are not things that I can go without, the mild stool softener prescribed by my doctor was added to my regimen. Fortunately, it has been quite effective and hasn’t had any ill effects.

    Liked by 1 person

  4. Alan October 19, 2016 / 15:23

    Good post Ronny.
    After major debulking two years ago, I started to experience constipation to the extent where it was sometimes a real problem to live with..There seemed little I could do to increase motility, including increased walking. I have always been fond of a high-fibre diet, so there was no easy solution via change there.
    When I mentioned it to my NET specialists their first reaction was to specify camera scans of the gut to check for blockages that might not show up in contrasted CT scans designed to highlight NET-related problems. Happily, nothing could be found, so I fell back on my original thought that the problem is related to my Lanreotide dose.
    To explain…..I have been on a high dose (120Mg @ 4 weeks) for a long period, both prior to and after the debulking surgery. While at one this dose would have been needed to combat the diarrhea symptoms caused by a large tumour load, my logic is that a reduced diarrhea impulse post-debulking means I am taking more Lanreotide than I need. I discussed my idea of reducing the dose, but apparently tests have proven that 120 Mg is the optimum does for deterring tumour growth, so it is recommended I continue at that level (and it seems to be having some good effects).
    However, to deal with ‘where we are now’, I’ve consulted my GP and been prescribed Lactulose, which everyone on here is probably familiar with…. it’s the sweet-tasting liquid laxative that you’re given in hospital if constipation sets in (e.g. due to taking lots of painkillers). This at least makes it feasible to live with constipation, by loosening things up

    Liked by 1 person

    • Ronny Allan October 19, 2016 / 15:27

      Thanks Alan, interesting. I’m actually on 90 mg, always have been. 120mg is in reserve. I will never take Lactulose again, weird side effects! Hope you have better luck than me 😐

      Like

      • Alan October 19, 2016 / 15:32

        Everyone’s different, so side effects tend to be unpredictable I guess!

        Liked by 1 person

  5. Ed October 19, 2016 / 11:03

    Yes, not too many blog posts on this. I find that I don’t know why it’s happening so, I am unable to post. When I see the doctors…..I get nothing except medication. No answers. Maybe they don’t have them either? Thanks for the post Ronny. Here’s what helps me. I eat a diet that leans toward a large helping of veggies and take a stool softener and laxative every day. I adjust dosages based on my symptoms. It’s hard to make good adjustments without swinging completely the other way. Either way, I end up stuck in the house. It’s frustrating.

    Thanks for the post.

    Liked by 1 person

  6. tensnut October 19, 2016 / 01:37

    Nice to see a discussion of this! I’m with you on this and am following to see your conclusions. One thing I’ve figured out…a little loose is better than not!

    Liked by 1 person

  7. lindastory308 October 18, 2016 / 22:49

    Yip that’s me. I have to be careful not to run out of bran, and salads.

    Like

  8. lindastory308 October 18, 2016 / 22:47

    Yip Ronnie constipation is no joke. I am a phaeo patient with constipation. It was at its worst following surgery, it was called post op illius or huffy bowels. I can have bran for breakfast, salad for lunch and dinner, drink gallons of water and still have issues. It is kind of under control now.

    Like

  9. Rindy October 18, 2016 / 22:33

    Im currently hospitalized for fifth time this summer do to adhesions from abdominal adhesions, extremely painful!!! Decoded to operate but found out I’m malnourished, low pre albumin numbers and can’t operate til those get better. It’s a vicious circle. And, they can cover back again once removed

    Like

    • Ronny Allan October 19, 2016 / 11:58

      Get well soon. I too have adhesions but so far (fingers crossed) they are not up to any mischief. My next scan will be interesting though given this year’s issues. Good luck with your treatment

      Like

  10. crystaltipps24 October 18, 2016 / 22:18

    Good honest blog Ronny, these issues need to be talked about. Haven’t had a problem with it myself for a good few years, but according to Zoe Harcombe vitc is good to get things moving.

    Like

    • Ronny Allan October 19, 2016 / 12:00

      I think the issue is a bit more than just to get things moving. Things are mostly moving, its the feeling that things are still left to move (incomplete emptying) that I’m assessing. Depending on the gap between BMs or what I’ve eaten, it’s like and D and C in the same BM!! This is actually an IBS symptom.

      Like

      • crystaltipps24 October 19, 2016 / 18:02

        I know the feeling of the not emptying its very frustrating, still constantly on the toilet but for very little relief. Had it a lot before the D kicked in big time, and then you’re wondering where it all comes from. A hard one to solve, especially when it’s combined, and I haven’t had surgery. Fingers crossed that you can get a this resolved quickly.

        Liked by 1 person

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