Anal cancer

Thank you Jaycee12.It's so nice of you to reply to my message...I hope you are doing OK,after  all you've been through..I haven't been on here for a while as been feeling rough,and so,so lethargic,and tired.But I remember you well,from  when I was on here before.and . its nice to catch up again with everyone..I,ll let you know how I get on ,but it's  for an colonoscopy which I,m dreading.Xx

Hi Irene I know you have had some ups and downs regarding your bowels and hope that you are able to make the right decisions to help make your life easier. You have had it tough but always willing to come on here and give great support for others. Take care

Hi Clareva

Great news you have got the all clear but sorry you are having a lot of problems.  I am 12 months post treatment due an MRI this Wednesday and still have to go to the loo about three times before i can go out in the morning first one as soon as i get up from bed! some days are better than others on whether i need to go to the loo during the day.  I am also very windy!  I am very lucky that my specialist radiotherapy nurse makes me a telephone appointment 2 monthly she doesn't have to but asked if i would like her to keep in touch as i am now back at my local hospital for treatment.  She has recently given me a food diary to fill in and keep for a week then send to her. On this i recorded everything I ate and drank and the times, whether I was stressed or relaxed, out or in the home and also when i opened my bowels and from the stool chart she sent me what number they were from 1-5, also any mucous wind or accidents.

She rang me to discuss last week and said she was very impressed at how healthy my diet was but there was a pattern showing I was opening my bowels more during the day when I had eaten broccoli and green beans!  Other culprits for the wind besides these two were peppers, tomatoes, garlic and onions.  All my favourites!  So she told me to try and cut down on these.  she has sent me a leaflet from Sheffield Hospital "Late effects and nutrition following radiotherapy to the pelvis" which is very good giving info on longer term side effects and what to eat depending on whether you have diarrhoea or constipation, tenesmus and wind.  Wonder if this is available in other hospitals. She also sent me a leaflet on Soluble and insoluble fibre and what foods to include in your diet - this has West Suffolk NHS foundation trust printed on it but came from Sheffield.

My nurse has also referred me to a pelvic floor physiotherapist who I have seen twice so far and I am finding this very helpful with the exercises she is giving me and she is great to talk to!

You are only seven months post treatment so hopefully you will start to improve soon.  My nurse said that all the side effects I have are normal after radiotherapy to the pelvic area.  Hope you get to talk to your specialist soon and they will go through other options to help you before deciding on a stoma. You are not on your own remember that.

All the best,

Carole x

I have just finished treatment and am trying to be ready for whatever may come next so my thanks to everyone who has contributed to this thread. That Sheffield Hospital leaflet is available online from here https://www.sth.nhs.uk/patients/patient-information/find-a-leaflet/view-all-alphabetically?i=l  and it looks really useful.

Thank you so much for this lindamae 

Hi Lindamae

That's great thanks for finding the form online so it can be useful to others on the forum. I hadn't thought to look if they were available online. 

I have now found the leaflet from west Suffolk NHS I was given headed Fibre explaining about soluble and insoluble fibre the link below:

https://www.wsh.nhs.uk/Patients-and-visitors/Patient-information-leaflets/Patient-information-leaflets.aspx?GenericListPL_AtoZLetter=F&GenericListPL_List_GoToPage=2

Best wishes 

Carole xx

I had my stoma fitted before my treatment, it has definitely made life easier for me in lots of ways. I was gutted when my consultant told me that was  what I had to have, but now I've had it since March and it's getting easier to live with now I've got my routine.  I'm nearly 7 weeks post radio/chemo  treatment and just waiting for scans to confirm how things have gone, bit of a nervous time tbh, but hopefully I'll have good news. Don't be worried about having a stoma, as you will hear from lots of ostomates it's a positive way forward if your struggling,and can be life changing for the best.  Good luck for your journey x

Hello Jumin great you are doing well and good luck with your tests. I don’t think any of us escape the feeling of nervousness when waiting for scan results. I’m over two years post treatment and up for my CT scan next week and know I will be anxious about how that turns out. We just have to keep going and be as positive as we can.

Thanks Jumin  for this positive post regarding your stoma, in the beginning, at diagnosis, the news that on top of being told you have cancer you’re then informed that you need a stoma must be like adding insult to injury but for those suffering long term side effects from the radiotherapy where constantly needing to be near the toilet is your first thought every day this surgery can be life changing. If I couldn’t control things via diet etc., & all else had failed I would like to think I would definitely choose this surgery over sacrificing my quality of life. 

Just to add also the scanxiety is real isn’t it! Lots of good luck is winging its way to you for those results, I’ll be thinking of you. 

Nicola 

Thanks Jaycee,  I went for the procedure yesterday,(a Camera investigation of the bowel)  but because enema didn,t work, they couldn't do the procedure, so  they sent me  home. I only got as far as The exit to the hospital, and it poured from me.I rushed back in to the Toilets,and there was a long queue.It was the most Horrendous experience ever. 

They want me to go back on the 26th now, and have given me 2 big packets of a laxative to use over 3 days, and a diet sheet which is mainly  liquids only. I 'm in two minds whether to go ahead with it or  to cancel.