Hi I'm Marion and I'm new here

[Hillcrest1]

Hi all I'm new here and would like to hear from anyone that have suffered fecal incontinance after cancer treatment.

I'm a 60 year young lady that thinks I'm in my 30's. Love life friends and my family.

Don't know what else to say. Hope to hear from you.

[Triumph-Girl]

Hi Marion - sorry to hear you’re suffering this way. I finished chemorads in September, hoping that it’s early days and I will still recover from intermittent bowel incontinence. I’m widowed so with lockdown I’m coping ok but looking ahead i don’t feel I would ever be able to wear light summer clothes, go swimming, go back to my jive class etc etc. I know I am lucky, it could be so much worse but... I’ve been practicing pelvic floor exercises in the hope I can control more but it’s like my muscles do an involuntary contraction in that area. I mentioned it to my CNS she says early days or maybe milk intolerance. Hopefully it is early days. Wishing you the bestTriumph Girl x

[Ladyparts]

HI Marion. Welcome to the forum I hope you find it useful. I am still relatively new here and I everyone seems really lovely and supportive.

I'm sorry to hear that you're experiencing that awful symptom. How long has it been since you had your treatment?

[Hillcrest1 in reply to Ladyparts]

Morning. I had my treatment 11 years ago and my side effects since 10 years.

[nBnw in reply to Hillcrest1]

What are anal plugs?

[Hillcrest1 in reply to nBnw]

A Small rubber plug that you put in your bottom. I thought it would be annoying but you never knew it was there

[nBnw in reply to nBnw]

Many thanks for this. Where do you get them - do they have to be prescribed? Thanks again

[Hillcrest1 in reply to nBnw]

I was attending a bowel and incontinance nurse and she got me them. Good luck

[nBnw in reply to Hillcrest1]

Many thanks Hillcrest

[Hillcrest1 in reply to Ladyparts]

It was 11 years ago but the bowel problem has never eased. It probably only started 1year after I finished the treatment

[janfarrugia]

I had my radiotherapy over 20 years ago and have only relatively recently started suffering from bile salts malabsorption and fecal incontinence/ leakage. I have found anal plugs helpful. GP referred me to a Women`s Health Physiotherapist in the Continence Service. Has anyone suggested those? Only helps with leakage (if that’s the word) But I do randomly get the involuntary muscle contractions which I can’t control.

[Hillcrest1 in reply to janfarrugia]

It's so hard, I'm sorry to hear about your problem. I tried the plugs but the just came out with my runny problem. Glad it's worked for you.

[Mariecapp]

Welcome to the group. I can identify with you. I have suffered with this for a few years. I'm 4 yrs post cancer treatment. This problem depends a lot on my diet now and I'm still learning what I can and can't eat.

[Hillcrest1 in reply to Mariecapp]

Diet is my issue too but I find that there is not much I can eat, can’t have artificial sugars can’t have pasta can’t have cakes curry’s fish. The list goes on, what CAN you eat?

[accidentalcarnivore in reply to Hillcrest1]

So i eat, meat, fish, poultry, some dairy,some pork. I add in some rice cakes sometimes for crunch. Average portions, once a day in a 2 hr window. At least that way i know when i have to go it will all happen within in an hour and I'm safe to go out and about.

[Happyretired]

Welcome. I had chemo radiation almost 17 years ago and initially no problems however after about 5 years I started having very mild leakage and over more recent years more severe bouts of incontinence which has definitely affected my daily life. I know most of my triggers in relation to food and stress however there are times when there is no rhyme or reason for an accident! I have found Loperamide syrup suits me well as I can easily adjust the dose as more often than not 1mg is sufficient to settle my tum. However if I am going out , which can be stressful, I increase the dose accordingly. Like many of us I am at my worse in the morning so try to adjust my daily activities to suit. Sadly I no longer go into a pool or take part in any strenuous activity and I always wear dark trousers or leggings!It’s not easy but you are definitely not alone.

[Hillcrest1 in reply to Happyretired]

This sounds bad what I’m going to say, I’m glad I’m not Alone. I’m the same as you don’t like going out unless it’s with friends that know my situation. I have used many pads but I have now been given great ones. that gives me a bit of freedom but they are a bit bulky 😢I tried loperamide but that was years ago, it was the liquid too, might give it another try, does it definitely work for you?

Thanks for your message, so glad I’m not on my own, really feel for you as it’s so hard

[Happyretired]

I think this group is great for support because it’s good to know that others share our problems. Do try the Loperamide liquid again and play around with the dose because it takes time to find what suits you. I occasionally take the capsules but for me there becomes the risk of constipation with overflow. Life is not always easy but it’s better than the alternative! Chin up.

[Whittlestone]

Hi Marion,

I'm fairly new to this group as well but found the support really helpful. I had my cancer treatment over 20 years ago and initially seemed to recover from bowel problems. However, over the last few years they have returned, along with bladder problems, and deteriorated. I have found it takes some time and medical intervention/advice to find a balance. I take loperamide and cholestagel (the latter is usually prescribed for bile acid malabsorption, which I have been tested for and don't have, but the medication helps anyway). Diet plays a big part for me and I find I can eat wholemeal/grain versions of foods where I can't eat more processed varieties eg pasta, bread. Anything fizzy or with artificial sweetener also agravates the problems - out went the Prosseco!! If you are UK based perhaps look for a late onset radiation clinic near you - check on the internet. Also there is a charity Penny Brohn which I found very helpful as they have a holistic approach to care and intervention, but it depends where you are in the UK as to whether there is a branch near you.

I go through good times and bad times, but on the whole I manage my conditions quite well.

Hope you stay strong and find some level of resolution.

Best wishes,

Sue

[Hillcrest1 in reply to Whittlestone]

Thanks for this and stay well. Can you tell me a few things you can eat as I find it hard as I’m not a good cook 🥴I stay outside Glasgow

[Whittlestone in reply to Hillcrest1]

I think different things work for different people. I went on line to find out what food and drink agravates bowel and bladder problems and worked with this. I went down to a very basic diet, roast chicken, potatoes, whole grain rice and a few basic veg. Then I gradually added different food in to see how they effected me.

I worked out that I can eat any meat and fish, but need to be careful with spices and processed meat. Any acidic fruit can be a problem, so I eat such things as oranges only occasionally. I am fine with potatoes, whole grain rice and wholemeal pasta and bread. Most vegetables are fine.

A real no, no for me is processed foods. White bread, cakes, biscuits, crisps etc really cause me problems unless I make them myself using wholemeal flour. I tend to drink mainly water or peppermint tea, but am OK with decafinated tea and coffee.

I am not a great cook either and don't enjoy it!

[jude-the-obscure Community Pioneer]

Can someone explain the term "chemorads" to me please? I had radiotherapy for 6 weeks and two lots of brachytherapy. Later I had three courses of IV Chemo therapy - quite separate from the radiotherapy. Is it just a shorthand way of describing the treatment or are the two types given concurrently? If they were it would be hard to sort out which side effects were caused by which treatment!

Dear Hillcrest

Food and mood both play a part. I tried sweetheart cabbage agin recently - on first occasion (well cooked) it was fine. Last Sunday cooked quickly til just a little crunchy I suffered all afternoon and evening with serious colic. Heat pads, Buscopan, peppermint tea etc all to no avail. Carrots Green flat or runner beans, potatoes and parsnips are fine. Onion family (all kinds) is a big No no! Sprouts don't do it for me either!

Chicken, fish like salmon or cod, bacon, eggs all OK . I avoid baked beans however.

Hope this helps

Jude

[HarleyQuinn82 Community Pioneer in reply to jude-the-obscure]

Hi Jude

Chemorads ir chemoradiation is often used to describe a treatment plan commonly used for cervical cancer where you have chemo once a week with radiation 5 days a week for several weeks. The aim is that the chemo sensitises the cells so the radiation is even more effective. Along with increased benefit comes increased risk of side effects too. Hope that helps xx

[jude-the-obscure Community Pioneer]

Thank you HarleyQuinn82, I had not heard of that before - my personal experience relates to endometrial cancer and in the 1960's of nursing patients with Gynaecological cancers - very different then of course.

Jude

[accidentalcarnivore]

Welcome!