Bowels on Strike!

Hello Hubbles,

Really sorry you find yourself in this situation.

I’m wondering if you maybe have Bile Acid Malabsorption (BAM)? Apparently, it’s more common in people who have had a right hemicolectomy as the part of your colon that reabsorbs bile is removed.

Long story – shortish. I had LAR and loop ileostomy in Jan 2021 for rectal cancer. Ileostomy was reversed in March the following year (after chemo). I had a number of blockages after this due to a tiny leak at the site of anastomoses which caused a build up of scar tissue, narrowing the bowel (hence the blockages). They had to go back in and re-join but due to complication I had to have the equivalent of a right hemicolectomy in July 2022.
I suffered symptoms very similar to what you’re describing – very watery stools many times a day, frequency (almost every time I moved) and no control. I lost over 2 stone in a very short space of time. To be honest no-one seemed to help so I ended up doing my own research and came across BAM. I contacted my consultant re this and was told it was very likely and he’d refer me to a gastroenterologist (waiting list of 14 + months – so I’m still waiting). I was also referred to a dietician but I seemed to know far more than she did, so it wasn’t very helpful either. I decided to try a very low fat diet which research suggested might help and I’ve been following this since around last October. It has made a huge difference – life changing!

My diet is less than 3% fat & I can’t tolerate more than about 10g of fat in 24 hours even if unsaturated. I also need to take a multivitamin as I can’t get the fat soluble vitamins I need. I also religiously keep a food diary.

Have a look online about BAM and see if you think it might apply. If so, I’ll be happy to speak to you further about it.

Best wishes

Net

Thanks for your info. I have found this really interesting. I myself had a blockage six weeks after reversal but it settled. I wonder how common this is and how many know about it 

Is it worth adding to the LARS forum?

Your advice on diet is really helpful 

Best wishes 

Thank you so very much Net for replying. It's such help to know I'm not the only person in the world in this situation.

I have heard of BAM and my symptoms would fit but they also fit into SIBO and ileocecal valve problems, all of which seem to be possible complications post right hemicolectomy according to our friend /enemy Mr Google. It's disheartening to hear that your Dr was unknowledgeable but so fabulous you've found your own way. May I ask how quickly your low fat diet started to help? It's been over 2 weeks that I can only eat rice or toast or I literally explode so pretty fat free but my stools are still just water including at night. I would be very interested to know more of how it worked for you.

Thank you!! Andrea xx

Hi Ann,

Pleased you found it interesting.  I was unaware of this before the op and the surgeon didn’t mention it as a possible complication.  I do wonder if it’s more common than people realise but put it down to other issues such as LARS or IBS.

I’ll post it on the LARS forum in case it might help anyone.

We (my husband as he’s the chef) has found ways of doing things using next to no fat – amazing what can be done when you have to!

How are you?  I’ve seen some of your posts and you certainly have had a difficult time over the last few months. Sending you a big hug.

Best Wishes,

NetX

Hi Hubbles,

I find it reassuring when you know other people have had similar issues to what your experiencing – this is such a great forum full of supportive helpful people.

It’s difficult isn’t it when you don’t know exactly what the problem might be and it can be very time consuming and tortuous experimenting yourself to try and find the answer.

The first 3 weeks after my right hemicolectomy were absolutely horrible. My bum used to explode and it was like weeing from my bottom (sorry). After my operation I was following the beige diet (the diet I followed when I had my ileostomy) thinking that was the sensible thing to do. However, there was a reasonable amount of fat in that and it took a while to find out about BAM and that fat could be an issue. Looking back at my food diary it was a good 7 weeks after my operation in July 2022 where I was almost bed bound and incontinent. However, once I reduced the fat intake I noticed at huge difference within 3 days. I still have issues but it is manageable now most of the time, but I do have to be very careful with what I eat and when and sometimes get caught out with hidden fat or just a bit too much for my body to cope with.

Another thing is probiotics. I had probiotic yoghurt every day after my operation and still have it now. I also have a Yakult each day too before my main meal and I really believe that helps me. I was surprised to find out that it takes at least 3 months to build up the good gut bacteria after clearing your bowel before an operation or colonoscopy. I also take Loperamide but try and cope with 1 x 2mg at lunchtime and the same at night. I don’t take them before food (as is recommended), as if I do, I get a very sore tummy with wind and bloating. So much is trial and error. Please ask if you want further info on what I eat and when, I do follow a very restrictive diet but as least I can get out and about now.

Do hope some of this is useful to you.

Take Care

NetX

Hi Ann,

Sorry, but where's the LARS forum, I can't seem to see it! 
NetX

Hi Net

It’s really interesting and I think to add it to the LARS will be really helpful for others and me to be honest.

My diet is still very limited and I definitely could do with cutting out some fat in my meals. The trouble with an Ileostomy it encourages you to eat really beige food very low in fibre which surprisingly I adjusted to quickly having no issues with white bread real butter mayo and fish fingers. Not much healthy stuff going on there then. It worked   Now I miss it. Ha ha. 

Thanks for the well wishes Net. Yes we’ve had it tough. Cancer Covid then cancer again that’s me Hubby Parkinson’s diagnosed six weeks after my LAR then. NAFLD 

Well we are fighters and having a break from appointments were just back from Tortworth Court and have booked two weeks in Spain. We are going to surprise the grandchildren. We are very excited. 
Ill link you LARS 

Take care 

x

It’s in the stoma group however LARS can happen after any bowel operation. It’s not just after a reversal 

I wonder if there should be a link between the two. I always thought it’s after a reversal but I was wrong. 
Here you go 

community.macmillan.org.uk/.../stoma-reversal-and-lars

Thanks Net, I agree this is possibly the best forum I've ever been on!! if only the world was full of all these lovely people.  Everyones kindness has given me such peace on this rocky rollercoaster.

Even after  the last 2 weeks of practically no fat I am still 'weeing from my bottom' as you say, possibly 10-20x a day and occasionally incontinent, which is very depressing at 51 years old when pre-cancer I was fit, active, working with 2 kids and generally a gung-ho type of person and now I'm virtually house bound.

I agree, there is a need to work it out for oneself and I guess that's because our bodies are all individuals. I will try to add the Yakut and keep on the low fat diet and see if this helps. 

Did your team do any investigations on you? I keep asking what my team think is going on and why they are doing a colonscopy but everyone says "we are not sure". I don't know if they really have no clue or if they are hiding something from me. I'm a physiotherapist and know that in the medical world we always have a list of potential diagnosis we suspect which guides our investigations so I fear they are suspecting something 'suspicious', otherwise known as 'cancer'. So I guess I'm back on the waiting game. But you've given me hope there will be an answer.

Thank you so much! And all the very, very best to you. It sounds like you too have been through a rough ride.

Much love and sun shine,

Andrea xxx

Hi Net,  

You kindly replied to me a while go about my severe diarrhoea and suggested this may be BAM. I've just seen my consultant today and she agreed with you! She's sending me for some BAM test but has also started me on Colestyramine and Loperamide. Do you take these? I will try to work out the low fat diet. You mentioned your husband is now an expert on virtually no fat cooking. Any chance he would be happy to share some of his tips.

Than you again for your previous emails. It was such a huge emotional support to know I wasn't the only one.

Good luck going forward!!!!

Andrea