Help with incontinence please

Hi Oldsinger and I’m sorry to hear that your mum is still struggling. The usual way of managing diarrhoea is with Imodium but it’s hard if it’s only sporadic. If she tends to be on the constipated side then sometimes ‘breakthrough diarrhoea’ can occur whereby loose stools have built up behind the constipated stool then leak through around it. Another thought, especially if she had a right hemicoloectomy, is bile acid malabsorption which is mentioned on page 7 of the booklet below

https://bcuk.adidocdn.dev/Publications/Bowel_Cancer_UK_Regaining_Bowel_Control.pdf

It’s tough I know as you say, once part of the bowel has been removed then everything travels through more quickly. Mine was a rectal tumour so I take an Imodium before my evening meal as that is when things start to move although I know that if I start with a bit of tummy ache after my lunch then a clear out will be coming. There’s also some good pelvic floor exercises in the book as sometimes it’s better to use your rectal muscles to hold things in until the immediate urge has passed and then go to the toilet rather than making a dash for it

Hope this helps and sorry that I don’t have a definitive answer

Take care

Karen x

Hi Karen, thanks for your help. Her GP was very reluctant to give her immodium saying it could mask something more sinister and sent Mum for a CT scan as Mum refused a colonoscopy. The CT came back normal and we never heard anything from the GP. We have bought some though.

May I ask if you use immodium on a daily basis. Mum was given something for helping reduce bile production but stopped taking it because it made her constipated!! Otherwise she's generally on the loose side with sporadic episodes of diarrhoea, so I don't think constipation is the problem. She also had diverticulitis so I think it's a malabsorption issue. We're going to try some psyllia husk and see if that helps but if she can take immodium daily it might just head things off at the pass so to speak..

Hi Oldsinger (995978ace5074569b452400e4371afb1) so sorry to hear that your mum is struggling. It's a worry for both of you. As someone who had a brutal experience first time round with a colonoscopy and vowed that I'd never go through that again, I fully understand her reluctance on that front. However, I needed another one last year, this time at a different hospital with a different consultant who listened to what had happened previously and understood my reluctance entirely and noted that on the referral letter.

On the day it was an all female colonoscopy team. The consultant had advised that I was to get additional pain relief alongside the usual mild sedation and the lovely colonoscopist herself decided to use a paediatric scope rather than an adult one. Over and done with in 20 minutes and these little tweaks made such a difference. Maybe your mum could be persuaded if the colonoscopy team could be advised of her situation beforehand and some adjustments made as the colonoscopy might give a clearer picture as to what's happening.  Would you be able to speak to the GP on her behalf?

I hope that your mum can get the help she needs as it's clearly affecting her quality of life.

Take care.

Hi Oldsinger 

Yes I take it daily. My surgeon told me it was ok to take regularly so I was taking 3 a day then when I moved house and got a new consultant he told me I was constipated (i certainly wasn’t) and to only take it on special occasions! I take 1 a day before my evening meal. The thing is to start low and see how she goes for a week - evenings are when my bowel is most active so that’s when I take mine. I also know that some foods will trigger me but I still eat them as long as I’m not going out eg. Curry, Chinese. I find salad is okish as long as I buy the expensive bagged leaves and avoid iceberg! 

Hello Oldsinger.

I’m so sorry to hear about your Mum it must be very distressing for both her and you.

Was it a right hemicolectomy she had? If so she could have Bile Acid Malabsorption (BAM)

With a right hemicolectomy they also take away part/all of the ceacum along with the appendix. The ceacum is the area where bile acids (released to deal with fat in the diet) should be reabsorbed to stop them entering the large bowel. If she doesn’t have a caecum then the bile acids can’t be reabsorbed and if too much bile enters the large bowel it causes urgency and diarrhoea along with other symptoms and is very debilitating.

It is a condition very much underdiagnosed and understood and many GPs don’t know about it! There is a test for it (SeHCAT) but you have to push for it and it can be difficult to get. You need to be referred by a gastroenterologist and there’s often a long waiting list to see one!

I can be controlled by a very low fat diet. However take care as it’s surprising how much hidden fat there is in many foods.

I was diagnosed with sever BAM (eventually in 2024) after a right hemi colectomy in July 2022. I didn’t get much help and did much research myself and had to push for the test. I now follow a very low fat diet and take Cholestergel (film coated Colesevelm) tablets daily. This allows me to lead a relatively normal life although eating out is almost impossible.

Please come back to me if you find BAM might be the culprit and require more information about any of the above, including more in depth stuff about preparing normal meals without using fat and the amount of fat you might get away with eating without consequences.

I really hope this helps your poor Mum.

Best Wishes

Net77 X

Thank you for this. Yes Mum was told she probably had BAM although they never tested her for it. She was put on colesevelm tablets which stopped the diarrhoea but made her constipated. She won't take them now because of this despite me and my sister trying to persuade her otherwise. 

I'm going to try her with psyllium husk ( in low doses to start with) to try and bulk up her stools and to use immodium more regularly. 

Any pointers to diet changes would be most welcome.

My mum has had exactly the same issues! was 84 when she had her op. Now 90. She has had to advocate for follow up and the help with her post op bowel issues has been zero! She also can be fine for weeks and then wakes up with no time to get to the toilet. She also has diverticultis.

What did help quite a lot however was probiotics...she has a great relationship with her local pharmacy and so chatted to them about what might be appropriate.  Otherwise, immodium is the immediate fix. I don't think she and my dad pay enough attention to food triggers, but it is trial and error and personal reaction for so many of us.

Hello again Oldsinger,

I’ve attached a link to a South Wales NHS leaflet which explains in simple terms why Immodium (Loperamide) is unlikely to help much if your Mum has BAM. Although it slows down transit in the digestive tract it doesn’t stop bile acids entering the bowel and causing irritation which is the main cause of BAM as the irritation causes uncontrollable diarrhoea and an extremely sore and burning bottom.

https://cavuhb.nhs.wales/files/neuroendocrine-cancer/patient-info/bile-acid-malabsorption/

BAM is a relatively little known about condition and even less fully understood the effect it has on peoples’ lives, even by the medical profession. 

I’ve found the secret to controlling things so I can lead a relatively normal life is a combination of very low fat diet and Colestergel (Colesevelam) tablets. It took a couple of years to fully refine it.  I too was referred to an NHS dietitian which was a complete waste of time as I knew more than she did and some of the dietary advice she gave would have caused problems.

How may Colesvelum tablets were you prescribed a day and were you advised to start low and increase if needed? My gastroenterologist was happy for me to experiment myself with up to a max of 6 x 625mg tablets a day. I’ve settled with 2-3 per day along with a very low fat diet (under 5% fat per meal with a maximum of 20 -25 grams of fat per day). If I’m eating at friends’ or have something where my fat intake is a bit higher I’ll increase my dose for that day only. It was very much trial and error to begin with but it was worth it to lead the life I have now. I also take I x Loperamide at lunchtime to slow things down so more nutrients can be absorbed before food enters my large bowel.

NB: *If you have BAM you should be having your vitamin levels checked regularly and possibly Vitamin B12 injections every 12 weeks. Also you may need to time you take the Cholestagel tablets as they can interfere with other medication.

Regarding diet:

It takes a lot of strong will and discipline especially to start with, but if you want to lead a life where you can go out and enjoy things it’s worth doing and it becomes easy to refuse food you know will cause you problems.

All our meals are prepared form scratch so I know exactly what is in them. I rigorously keep a food diary, it’s a bit of a bore but invaluable – if I have an issue I can then usually trace it back to something I’ve eaten.

Everything I eat is either no fat or very low fat.

Skimmed Milk only

No cheese . Although I’ve found I can tolerate Jarlsberg Light (from M&S) if I stick to a maximum of 1.5 slices with bread. Not the best cheese but better than no cheese.

No butter, fat spreads, cream, ice cream -which means no foods with these in either.

No skin off meat & remove fat from gravy.

No avocado, hummus, mayonnaise etc

No fried foods, although I can have fried egg if I wipe oil around non stick pan (not enough oil to actually see)

We buy extra lean mince for the base of many dishes such as chilli, bolognaise etc and obviously we don’t fry it.

I use 0% Greek Yoghurt for the base of dressings with lemon, horseradish, mustards, balsamic glaze etc to flavour. It also works well as a base for homemade coleslaw. I make a vinaigrette dressing without oil for salads.

We use sauce flour for sauces - Don’t add fat (whisk it with milk and add herbs, spices or whatever and cook in microwave - it works surprisingly well with no fat).

I use mashed banana or stewed apple in place of fat in baked goods, although I don’t eat much of these and find I don’t miss them. Neither do I miss biscuits or chocolate now – but it took a while.

I make frozen yoghurt with fresh fruit to have instead of ice cream, it’s really good.

We make Yorkshire Pudding without using fat other than to wipe around the tin).

We make pancakes using mashed up banana to replace butter.

Potatoes (no fat), rice, pasta and bread all help to reduce the % of fat in the meal, but you still need to watch the overall fat content per meal and per day! (In my case no more than 20g of fat per day* and no more than 5% fat per meal).

We’ve found most things can be adapted at home without the need for fat or with only a tiny amount of fat (even roast potatoes). It’s shown us that there was far too much fat in our diet before that wasn’t needed. Unfortunately eating out is an issue as there is so much fat used and restaurants usually won’t amend their ingredients (when I’ve asked). Unfortunately, BAM is not catered for at all in the food industry.

NB:DON’T GET YOUR GRAMS AND % CONFUSED!

Sorry for such a long post, but hope it's helpful.

Net77 x