Hello and question

Hi Mary,

I can't offer any personal insight, as I'm currently in the treatment stage... but I met a lady at radiotherapy the other day who had to have one and she said how much it had improved her life. She did also list the downsides, but it was the right choice for her. Good luck going forward and coming to a decision. It sounds like you're dealing with a lot still 8 years on.

Jenna xx

Thanks Jenna! I hope the treatment is going ok. Glad you’re on the road to being a survivor! 
Mary

Hello Mary,

I'm sure there are some here who have had elective colostomies and I have read how much it has improved their quality of life, so hopefully they will see your post and come in.

Before you take this step - and it does sound like it might work for you - you may want to have a look at the FODMAP diet; it's also been mentioned here and I think some have found it really helped with some bowel issues.

I'm so pleased you have had successful treatment, and I hope someone here can give you more of the information you need.

Hi Mary I am 3 years 9 months post anal cancer so have a few years to catch up with you! The first three months, like you I had frequent bowel movements particularly in the morning and sometimes around 3 am! I was put on a FODMAP diet which did reduce the frequency and stopped drinking coffee or lactose in milk. This did improve bowel movement to about two to three times in the morning and possibly one in the evening. I am not on the FODMAP diet anymore and gradually brought in foods I knew wouldn’t have me rushing to the loo. I cannot drink alcohol or eat too many citrus fruits or chocolate. When I came off the FODMAP diet it was nearly Xmas and started gettIng urgency symptoms and my dietician said chocolate is a laxative! Citrus fruits can irritate the gut and alcohol immediately has a diuretic effect on me. It has become a way of life how I juggle things regarding eating but will admit it has really improved due to my being very aware of what goes in has to come out. I don’t know why it happens after treatment as I had an enzyme test and that came back okay. I do tend to know if I am going to be constipated and take measures before bed by having a teaspoon of organic black strap molasses in a glass of hot water before bed. It helps sleep too and full of magnesium and iron. If I am loose I take the usual Imodium tablets. If I have to be somewhere the next day I have sometimes used a suppository to activate a bowel movement so I can hopefully feel I won’t have to go again for a bit. My inner spinchter has been damaged whic is an involuntary muscle that you can’t do much about but you can strengthen the outer spinchter just like you would the pelvic floor. 

as you are having a pretty hard time which the post side effects would it be an idea to see your GP to get to the bottom (didn’t mean that) of what is causing this. Have you seen a dietitian? Eight years is a long time for you to have been suffering this which must really have a big impact in your quality of life. Having a colostomy bag I have read on here has given some members a new lease of life and sure they will soon come forward to tell you how it’s been for them. Good luck

Julie

Thank you Julie. I will definitely revisit the FODMAP diet. I think I need to see if I can connect with a dietician but in the past all I’ve gotten from the ones at the cancer center was ‘take fiber..which makes things worse for me. 

Already it has helped to hear from some of you that are experiencing similar issues!! 

Hi Mary C

I don't have personal experience of a colostomy and I'm only 7 months post treatment. But there is a lovely lady on here called Irene75359  and if i recall correctly she had an elective one ( sorry Irene if I got that wrong) Im sure she will respond when she picks up on your post as she is an active forum member. Xx

Hello MaryC

Oh I can sympathise about the problems!  Initially I got round it by having Laxido last thing at night and prune juice in the morning alongside a huge pot of tea.  So I would have to wait (probably until 12-1pm) until I had gone probably two - three times.  Then I would be safe going out, but not always.  The urgency if I needed to go was overwhelming.  My other problem was anal stenosis, so Laxido was a necessity in order to be able to pass stools at all.

I saw the colorectal surgeon at my local hospital and he was wonderful; he was anxious to reassure me that he wasn't going to persuade me to have a stoma but he said it could be life-changing.  I thought about it and decided to go ahead.  I didn't have long to wait and on the morning of my surgery I just made it to the loo in time and it just brought home to me how precarious my life had become.

That was a year and two days ago, and I can honestly say I have never looked back.  I have had perhaps two incidents of constipation, where my stool pushed the bag off, (both times I wasn't caught short, I could feel it happening) and, for the first time ever, a couple of weeks ago again a hard stool pushed the bag off followed by explosive diarrhoea resulting in a huge clean-up operation.  But that one incident certainly hasn't put me off having a stoma, I had more accidents than that pre-stoma by not making it to the loo in time.  In fairness to others with stomas, I think I have had it relatively easy, I joined a stoma group but feel a bit guilty that I am so problem-free whilst other struggle with bags sticking, leaking, hernias.  Since having mine I never ever carry anything heavy, (risk of parastomal hernia) but that is all.  I was a bit paranoid about belly farts but after the early days they very rarely happen, and if they do, I can stifle them by squashing my hand down on my stoma.

There is a forum on here, Ileostomy, colostomy, urostomy and any other stoma support  that you might find useful, the people on there were certainly very helpful when I was dithering.  And it would be useful for you to get feedback from people where having a stoma hasn't been plain sailing. 

Wishing you all the luck in your decision, and anything at all that I can help with, just shout out.

Irene xx

Hi , 

im a year post chemoradiotherapy .. I have suffered late effects which led to a colonoscopy ( had to go private ) I have radiation proctitis / enteritis but I’m no further getting any relief other than knowing what it is ? .. 

i hope someone can help you 

take care 

Chrissie xx