Anal cancer

Hi Clareva ,

I’d like to offer you a warm welcome to the Macmillan online community & congratulate you on completing your treatment & being declared NED. 

I’m probably not the best to advise as my bowel habits swung completely the opposite way during & after treatment but I did have a conversation with my oncologist about people that suffer longer term unpredictable bowel habits after this treatment, he knew I volunteered on this forum, his advice was similar to what you’re suggesting & said that if someone’s quality of life was severely affected then it was definitely worth while considering a stoma. 

It’s definitely worth sitting down for a conversation with your consultant, just make the decision which you feel is best for you & that offers you the best quality of life. 

Nicola

Hello Clareva welcome to the group and congratulations with completing your treatment and the all clear. When I completed treatment I had pretty inconvenient trips to the toilet up to six seven times of the day on bad days and felt like it was lots of trips with relatively small amounts of stool rather than one or two large stools and be done with it. I was a member of ramblers and my husband and I regularly used to go walking every weekend but I had to give that up as I never felt safe and always felt I hadn’t finished (bit like tenesmus). A couple of times I would walk a route near my house and as I was getting closer to home I could feel my bowels loosening like my brain was saying you can let go now which used to make me put a spurt on and I have had to run a couple of times and it would start to release which isn’t a nice feeling at all. My oncologist put me in touch with the dietician who put me on the FODMAP diet for three months and after a few weeks my trips to the toilet reduced to twice a day! She also put me in touch with the pelvic floor physiotherapist who started showing me tips on how to strengthen the anus. When nature called I would stand by the toilet and try and hold onto it for a few seconds before releasing to try and train the sphincter muscles. I do know that we have an external sphincter muscle and internal sphincter muscle and if the internal muscle is damaged by the therapy then I don’t think they can do much but you can strengthen the external muscles. Also fibre is good for bulk and soluble fibre is better than insoluble for me as the soluble bulk and the insoluble make me go more. I eliminated sugar as much as possible and chocolate (sadly) as that for me is a no no now as it acts as a laxative and also I don’t touch alcohol anymore. I am not a hundred percent but so much better but always have to watch what I eat. I am due to go to our nuclear medicine hospital to swallow some radiation pills to test for intestinal damage as sometimes radiation can affect the smaller intestines allowing bacteria into the larger intestine causing loose regular stools. I do think it’s worth seeking all avenues available and as Nicola as pointed out some who have opted for the stomas have found this option life changing giving some a lot more control and freedom. When we have treatment we feel so grateful when we get the NED but sometimes the side effects leave a life changing legacy that disrupts us being able to just move on. Some people are lucky to go back to normal and some of us find a new normal that is manageable. Good luck with your consultation and hope you get answers.

Hi Clareva,

The after-treatment phase really is hellish, isn't it? I thought I was prepared for it, but I wasn't. 

I know it feels as if you've been done with it all for long enough and should be back to normal, the stark truth is that the goalposts vary wildly between indiviiduals, and for each of us on our unique paths. Some folks here sailed through it all with minimal discomfort and got 'back to their real lives' and never look back.

Bear in mind that most of these folks leave this forum behind as well, so we hear from fewer of them.

Most of us take a while to recover. It's been a year and a half for me, and while my life looks much like it did before, there are differences and adjustments. Even now I time my days carefully to make sure I've had the opportunity to completely empty my bowels before I leave home. I haven't actually lost control for quite a while, but I've had some near misses. 

A stoma to free oneself from the toilet is a good solution if the problem persists. I'd certainly keep it in mind. But keep in mind as well that your body has been through HELL, and it's not surprising that some things are taking a long time to recover. For me the worst is the fatigue, which still sneaks up and hammers me out of the blue. I thought I'd be way past all that by now, but here I am. Nor am I pain-free, although it's way better than the Bad Old Days. I can have careful sex, and sit on my pony and walk around although nothing more vigorous. Other than that, I'm back to most of my pre-cancer activities.

I'm so glad to see that Nicola and Julie have weighed in. They both have given me fantastic, helpful advice over the last year. 

But you've completed your treatment and are NED! You are a warrior! You are a badass! Yay, you!

Suz

Hi Clareva,Reading your story is  exaxtly like reading my own story..

I am 18 months post Radiotherapy treatment ,and am still sufferring the  after effects of the treatment.I was told 3 weeks ago that the cancer was gone which is brilliant, but it hasn't been an easy time in any way.I still have to watch  carefully what I eat. I can,t go too far from home as I need the toilet every hour or two.and if I can't get to one, then I  have an accident.Its all so embarrassing.I,m forever oozing mucous,which  absolutely soakes me,.so I feel I know Exactly what your going through Clareva.and it's  awful...It just controls my life..and I expect it does yours too.?.

I am still having pain which I don't understand why, so at my recent visit to Velindre to see the Oncologist,I just poured it all out,and I,m so glad I did,as He,s referred me to the Gastro. Clinic,nd arranged for me to have more tests done to see why this is all happening..I think maybe you should talk to someone at the top,first before you make a decision about a stoma..I decided against it,nd For me,that was the right thing to do.but I'm at the Gastro clinic tomorrow,so will be interesting to see how it goes.I,m praying they can help me..I hope you don't mind me sharing this with youI just felt I should tell you,that your not alone.There are some great people on here who can help and advise you with issues.If you want to chat any time,I,and others are always here.Sending love and hugs..️

Hi Belzy so glad you shared your experience which helps others open up and not be embarrassed. So glad your oncologist is sending you for tests and good luck with that. I just don’t think doctors are always aware on how treatments can affect the bowel. Sometimes you just have to shout loud and make them listen. Probably due to the rarity and they don’t all have much experience with the after effects. All the best for tomorrow 

Hi Clareva,

I have not had chemoradiotherapy so my case is a little different to yours but I have had Crohn’s for about 23 years and have had many accidents over the years which has been really unpleasant. I have also just had APR surgery for anal cancer and can honestly say that so far the stoma has been such a change for me. I have not had to constantly worry where the toilet is or rush for it. I haven’t had to turf a family member off because I was so desperate I couldn’t wait! I won’t pretend it’s an easy solution but I am starting to think that maybe I would have benefitted from it when the colorectal surgeon first suggested it to me about 15 years ago. It may be that I have been lucky so far (I am only a few weeks with the stoma) but it has so far been beneficial to me so if your quality of life is no good I would say to consider it.

Best wishes

Kirsty

Hi 

So pleased to hear you are NED great news!  I understand the late effects as im also get same although im only 6mths post treatment. I have to watch what I eat and need to plan if I go out (which is not often ) as I in pain andneed the toilet often, cup a tea and need a wee straight away, or bowels rumble and need poo straight away or as you say accidents happen.

I also get mucus and bought period pants from M&S  instead of wearing pads. I been wearing them since treatment started, I find them much more cost effective as can wash they absorb the staining, so dont feel wet. 

I feel also this controls my life, I've changed in myself. (I told my hubby today) I feel like a shell of myself. 

I'm too under Velindre. Finished chemo radiotherapy end Feb and under investigation for reoccurring growths. Next app this Wednesday for biopsy results. 

I found this site after I finished treatment, there are some good people on here who knows exactly how we feel, they have some good tips and support. 

Jinnie x 

Thx Jinnie, it’s great to be able to talk to people who have gone through similar to me and be able to ask questions. When I was at radiotherapy every day i never meant anyone who had my type of cancer until the very last day when I met a woman  was just starting radiotherapy. I waited for her and told her everything I had gone through in those 6 weeks, I was so happy to be able to give someone advice as I couldn’t talk to anyone. Glad I found this forum when I did. X

 Ive not met one person as yet whos going through or had this cancer. There is definitely a void to speak to someone in person about this journey. I so wish that was me you'd met.x

Jinnie x

Hello Clareva

I am so sorry you are going through this.  My issue in that I have fine-tuned my mornings to lots of fluid and some prune juice and by lunchtime I am empty.  But that is not ideal, so I completely hear you.  I saw a colorectal surgeon a couple of months ago and he recognised immediately that I had anal stenosis and I had a follow-up appointment just a few days ago and he actually broached the subject of a stoma.  He said it can be life changing for people and although I was taken aback it gave me something to think about.  So sorry if this isn't helpful, it was just to let you know that you aren't the only one in this quandary.

Irene xx