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Beating Bowel Cancer Community

Life with bowel cancer

Annielizzie

Bowel cancer and irritable bowel.

For a quite I number of years I have self diagnosed Irritable bowel and found that I needed to avoid a number of foods including wheat, eggs, beetroot, high fibre foods etc. This year I was diagnosed with bowel cancer and had half of my rectum removed at the end of June. Since then I have been experiencing times when my bowel has gone into spasm and is continuously working with alternate constipation but then mainly diarrhoea with both low and general pain and discomfort and spasm. At times I have accidents as well, mainly after eating. These symptoms can continue for up to 24 to 48 hours before they subside and feel really unwell. The symptoms did not happen to the same severe degree before the operation and the spasms are completely new.

I have now been diagnosed with mixed irritable bowel and wondered if anyone else has had similar experiences and how best to cope. I have been increasingly reluctant to go out as I am never sure when an accident will happen. I would be grateful for any thoughts. Best wishes to all.

Baxter2

Good morning @Annielizzie
I’ve just read your post and it made me think about how awful this situation is for you. I’m guessing overall your health is ok and you feel like going out but are reluctant because of the threat of the dreaded runs!!?

I did have some difficulty managing diarrhoea over spring/early summer after my CRS and HIPEC surgery but have things pretty well under control now. I would have to careful plan any outing even to a shop or park with my dogs around diarrhoea! I was referred to a gastroenterologist and he diagnosed bile salt malabsorption for which I now take a daily powder of Questran at night and use as many loperamide as I need (up to max 8 a day) as well as the odd couple of co-codamol to firm things up! Things are now much more settled thankfully and I never need co-codamol and only maybe 2-4 loperamide on an average day. I can pretty much get out and about without too much trouble. Yesterday we spend a whole day in Edinburgh at Rugby and ate out twice. Only a few months ago, I would never ever have contemplated this!

I hope you manage to get this sorted so you can live your life more normally! Good luck! Will you let me know how you get on? 😉 K 💚💙❤️💛💜

Annielizzie

Thank you very much for your reply @Baxter2.
This is very reassuring ans so pleased that life is much better for you. I am reluctant to have many loperamide as the spasms kick in when my stools are even slightly firm and then just swing between diarrhoea and constipation. I guess that I just need to experiment further and also expect that things will settle down more when chemo is over at the end of January. Many thanks again for your reply and I will let you know how I go on. Not sure how to get the smiley faces up but sending them to you too. :x:

Baxter2

@Annielizzie
I guess it’s all a lot of trial and error isn’t it? As you say, things may improve significantly after chemo finishes. Are you having irrinotecan ? I know this can cause a bit of havoc for some people. I have it but all in all, I manage much better now. (Folfiri and Cetuximab) take care! 😘 K 💚💙💛❤️💜

Annielizzie

Just folfox as I had a couple of nasty allergic reactions to oxaliplatin. Seven down and five to go! Yeah! Should be finished by then end of January. :x:

Baxter2

@Annielizzie
Not long at all! Well done you! 😉

Clancy

Hi@Annielizzie, I too have had this, and put it down to IBS. but it followed a pattern. I had my resection in May this year and I think I expected to bounce back quickly as i did with my liver surgery. I tend to get the spasm like a sharp stitch type pain when the pump comes off after chemo, the time when I am slightly constipated for two or three days, but if you think about it the sigmoid area has been mostly chopped out of my exit system, so it is narrower. My oncologist said there will certainly be scar tissue in there, because the bowel hates to be touched. I was totally convinced the tumour was back, so when I had my CT scan, it showed the bowel clear. So my mind is sort of calmer now. How do you treat yours? I have always kept Colpermin in my medication collection, sometimes I wonder if this is the right thing to do. I do hope my twopenneth was useful to you, and best wishes to you.:x::x:

fnkyf8

@Annielizzie one thing chemo does is target rapidly reproducing cells aka cancer but this also includes skin, hair, nails and all the good bacteria in your bowel hence why it can lead to problems. It also can make you become intollerant to food that was previously ok. I couldn't have dairy at all when I was on chemo and if I remember correctly @Bear Gn was the same. I finished chemo for now in June and now have good movements and am back on dairy. My advice would be keep a food diary to help with the problem, look into bile salt malasorbtion as @Baxter2 said and speak to your colorectal nurse. It's amazing what tricks they know to make things better :x::x::x:

Lizalou

Hi @Annielizzie

Sorry you are struggling, it must be awful to have your everyday life so badly affected. All the above advice is very good.

But before my diagnosis, my husband and daughter were diagnosed with IBS and started to follow (very loosely) the FODMAP diet. Once I had my ileostomy and could see for myself, I found a lot of the guidelines helped me too. If you Google it (the original Australian Monash university site) you will find lists....e.g. certain fruit and veg were disastrous for all of us e.g. onions and apples, also lactose and wheat are dodgy. We dont follow the diet very strictly but easily avoid the worst culprits. So keep a food diary and watch for any patterns and clues. You will probably find it easier to cook from scratch as most ready meals have dodgy ingredients hidden in them.

Good luck :x::x:

Bear G

Hi @fnkyf8
Chemo does affect us in lots of strange ways! Just to clarify the dairy thing in my instance, my nutritionist suggested I reduce dairy because of the hormones - I was struggling with energy levels.
I now mainly use dairy alternatives (not soya) and goats milk.
Big hugs
:x::x:

Annielizzie

Thank you @Bear G @Lizalou @fnkyf8 @ Clancy @Baxter2. I hope I haven't missed anyone out. I appreciate your replies and the excellent suggestions. I so wish that I had the support of a colorectal nurse. As a result of my husband working in the past for a multinational company we have private medical health insurance and have continued to pay it. One of the disadvantages is that unlike the NHS you don't have the support of a specialist nurse. As my consultant surgeon doesn't do follow up appointments I felt and still do feel pretty well abandoned and although I have been asked to be referred to see one through the NHS it seems impossible that this can happen. I have been asking for four months so far without result. It is the reason why the support of this forum has been so important to me. Thank you all. :x:

Baxter2

Hi @Annielizzie Are you sure you don’t have a Colorectal specialist nurse who works alongside your consultant surgeon? Im treated privately too using our health insurance and I have the support of two following my CRS and HIPEC surgery (albeit many miles away!) Also, as you have private health insurance a referral to a specialist nutritionist and/or gastroenterologist should be possible without too much trouble? I hope you manage to find a good way forward. Sending lots of good wishes, K 💚💙💛💜❤️

Annielizzie

Hi@Baxter2 Apparently not as I have asked both the consultant surgeon and oncologist and have repeated the request for the last four months. I have had a referral to a gastroenterologist but the insurance company won't pay for it as my policy does not cover chronic conditions. The letter from my first appointment gave a diagnosis as irritable bowel. The only exception for them is cancer. Maybe time to stop paying privately as it is becoming exorbitant anyway as we are both in our mid to late 60s. :(:(:(

Baxter2

Oh no @Annielizzie I’m sorry to read this. I guess there are perhaps differences between companies and different levels of cover. I certainly don’t think I’d still be around now if I didn’t have my health insurance. I’ve said this before but we pay far less for our health insurance than we did for our two dogs! It’s a strange situation! K 💚💙💛💜❤️

Annielizzie

It is a funny old world @Baxter2! I may need to think about continuing to pay for cover which doesn't meet my needs. Thank you again for your reply. :-/