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Did you hear the one about the constipated NET patient?

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constipation

did you hear the one about the constipated NET Patient?

 

It’s a joke right?  Not really and it’s not very funny either!

NET Cancer is 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.

In my blog on IBS, I said that many NET Patients were misdiagnosed with this condition prior to their correct diagnosis of NET Cancer.  I also hinted that NET Patients may experience “IBS-like” symptoms after their treatment, particularly following surgery on the GI tract.  I also pointed out that IBS can be diarrhea or constipation based, and there’s also a mixed category.

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).

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 dietician world – Tara Whyand.  My regime was now based on science, 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 I also 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. 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!

At the beginning of this year, 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 down to probiotics). Happy days, my strategy has worked.  However ….have you noticed, there’s always a ‘however’ with NET cancer?

Although I’m generally well, this year has highlighted that the balance is not quite right. My visits to ‘Timmy Toilet’ seem 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 two major episodes of constipation and pain with no ‘movement’ for two days. This happened in May and September.  My diary now has ‘zero’ entries in the daily bowel movements column, something I never thought I would see!  When you’ve had small intestinal surgery, as many midgut NET patients have, this sort of thing can be extremely worrying. An intestinal blockage 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, both issues were eventually settled and appear to have been a result of a sluggish system, although my scan next month will check to see if any issues in that area might have been contributing.  (Note – lactulose (oral) is awful, will never touch it again!)

So … am I a victim of my own dietary regime success?  That’s what I’m currently thinking ….. and notwithstanding my CT scan next month, I’m intending to work with my health professionals to address this issue.  The GP who assessed my constipation and pain in September has told me to stop taking a Calcium/Vit D 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).  I already get enough calcium and vitamin D through the normal channels plus supplements, so low risk.  I also upped my dosage of probiotics earlier this year from 5 billion to 20 billion as I remember that had a minor effect on gas and frequency improvement. I’ve reversed that to see what happens, it’ll take a month or so.  I’m now tinkering with my diet again, reducing my fibre intake and then build up again slowly.  Additionally, I could probably do with more exercise and 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’ll keep this blog live and hopefully find a resolution.

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!

Thanks for reading

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14 Comments

  1. edebock says:

    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

  2. Alan says:

    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

  3. Ed says:

    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

  4. tensnut says:

    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

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

    Like

  6. 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

  7. Rindy says:

    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 says:

      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

  8. 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 says:

      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

      • 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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