Recurrence after 6 months?

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Hi everyone.

Totally new to this kind of thing so apologies if this doesn't make sense!

I was diagnosed with Stage 3 Bowel cancer in December 2023. I underwent successful surgery to remove the tumour in February 2024. As there were signs of cancer in nearly all lymph nodes I also had 3 months of chemotherapy to clear out any remaining issues.

My bowel habits had been hit and miss for years before diagnosis. GP told me years ago I had IBS and "not to worry". Post surgery, once things got functioning properly, my bowel movements were pretty good for a while. I could sit on the loo and have a "normal poo" ... One wipe and I was sorted. This hadn't happened for a very long time. Obviously the chemo sent things back in the opposite direction and I was troubled with lots of diarrhoea etc. This cleared up a few weeks after finishing treatment.

The last couple of weeks however things have started to return to how they were before surgery. My bowel seems to want to get going first thing in the morning. I basically get 3 "movements" in one go. Firstly some (kind of) normal looking poo, slightly loose. This is then followed by some very loose, light brown poo that takes a while to get rid of (sticky). Finally I get a sort of gurgling air lock release in my left side and then quite a bit of loose, ginger coloured diarrhoea. All in all this takes around 15 minutes and usually requires my now household famous "double flush"!

I had some issues with bile production post surgery and had an extended hospital stay due to post operative infection. I've also been diagnosed with "Gilbert's syndrome" and been told my cancer was caused by Lynch syndrome.

Apologies for rambling but wanted to make sure I covered everything.

So my question really is does anybody think I might have an underlying issue? Could the cancer have come back already? My last blood test reported CEA tumour markers were clear. Liver function still being monitored as not yet back to normal post chemo.

I feel really well in my day to day life, but this was also the case before diagnosis.

Any advice would be greatly appreciated.

TIA

Kareno62 2 months ago

Hi Rolling Anarchy and a warm welcome to the board. Could I ask what sort of operation you had/ where your tumour was?

I can totally relate to your toilet issues! My surgeon told me I would get used to a new normal but, if I’m honest, it can vary from day to day. The sticky ones are the worst and the loose ones at least feel like you’ve had a good clear out. I take loperamide daily (half an hour before a meal) but it’s a balance to make sure you don’t become constipated! The fact that you’ve had part of your bowel removed means that the transit time for your stools is a lot quicker and therefore less water is absorbed causing the loose output. Loperamide helps slow the transit down which should result in firmer stools

There is a condition called bile acid malabsorption (see page 6 in booklet below) and also a condition called LARS - low anterior resection syndrome - hence why I wondered what surgery you’d had.

bowelcancerorguk.s3.amazonaws.com/.../RegainingBowelControl_BowelCancerUK.pdf

The fact your CEA is within acceptable levels is good news and you should have an annual scan too. However if you’ve got concerns then please speak with your GP as worry can cause more issues then you’ll worry even more and things can spiral?

Hope this helps a little bit

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Rolling Anarchy 2 months ago in reply to Kareno62

Hi Karen.

Thank you so much for the advice you've given. I will check both of those things out.

I had a right side hemicolectomy. Should have been keyhole but they had to switch to open surgery halfway through as apparently the tumour was a bit too close to my kidney.

I will try my best not to worry. I've not really worried during the whole process. Just a bit frustrating that things have returned to pre surgery bowel wise. As you say though this could be the "new normal".

Take care yourself, and thanks once again.

Rich x

Net77 2 months ago

Hi Rolling Anarchy,

Welcome to the board and great to hear you’re through surgery and chemo.

I do wonder if you could have Bile Acid Malabsorption (BAM), sometimes called Bile Acid diarrhoea (BAD) to a greater or lesser extent. It is more likely to affect people who have had a right hemicolectomy as the system that recycles bile acids (for digestion and absorption of fats and fat-soluble vitamins) is interfered with and/or completely removed. This allows bile which hasn’t been recycled (or can’t be recycled) to enter the large bowel where it stimulates electrolyte (salts) and water secretion which then causes urgency and very loose stools.

There has also been studies done that have shown 45% of patients investigated for IBS actually had BAM. Unfortunately many clinicians don’t recognise BAM as a cause of this disorder and might dismiss it as IBS. There is a diagnostic test (SeCHAT) test for BAM but it can be difficult to get.

Due to complications after my initial surgery and ileostomy reversal I ended up with the equivalent of a right hemicolectomy and now have BAM. I ended up having to diagnose myself. I religiously kept a food diary and it showed fat was the culprit, once I cut out most fat from my diet things improved hugely. I then pressed for the SeCHAT test which confirmed I have severe BAM. It is controlled most of the time by taking Cholestergel (which binds bile acids) along with an extremely low fat diet. I also have to have Vit B12 injections every 3 months.

Hope this helps and you get the answers you need. Please feel free to ask me anything if you think it might help.

Best Wishes

Net

Rolling Anarchy 2 months ago in reply to Net77

Hi Net

Thank you so much for your advice and for taking the time to message back outlining everything so concisely. Your suggestion of a food diary is a great idea, and I'm pretty sure this may highlight a few things. Amazingly, this morning hasn't been anywhere near as bad as yesterday. Let's see what tomorrow brings.

Could I also ask if you had any issues with belching and strange grumblings in the tummy area? I always used to be affected by gas before surgery but it pretty much disappeared afterwards. The last couple of weeks however it has returned, and during the evening my tummy is making some very strange, deep grumblings. I hope you don't mind me asking, I know these things are personal. From what I gathered from others in the hospital everybody experiences different symptoms. It's not always the main ones listed that can be indicators.

Thanks again for taking the time to message back. I really do appreciate it.

Best regards

Rich

Net77 2 months ago in reply to Rolling Anarchy

Hi Rich,

No don't mind you asking at all. Yes I used to get lots of gurgling, rumbling and squelshing noises particularly in the late afternoon and evenings, it's not as bad now since starting on the medication but occasionally plays up. My colorectal nurse likened it to not having a sluice gate anymore as my ileocecal valve was removed.

The food diary I kept was a game changer and I still keep one today (tedious as it is).

Best Wishes,

Net