Anal cancer

Hello Nanrek

A warm welcome to the forum.  I am so sorry to hear that you have these ongoing problems, I must admit I haven't heard of sores lasting this long but that isn't to say someone might be along and share how they coped.  It must make life very difficult for you.  What have they prescribed so far?  I had quite severe sores and the tissue viability nurse treating me tried lots of things and eventually found that Flaminal (Hydro/Forte) in conjunction with Polymem dressings placed on top of the sores really worked well.  I am wondering if the tumour has been replaced by scar tissue which can be very painful too, and some scars can be eased by massage (if you feel up to it) with something bland, like coconut oil.

And the bowel problem too, Jaycee12 had problems and went on a FODMAP diet which seemed to settle her down.  I believe she is on holiday at the moment but hopefully she will pick up and give you some tips, she has been very helpful to others with similar problems.

I really wish I could offer more constructive advice, you really seem to be going through it.  I do hope some others will be along with suggestions.

Irene xx

Hi Nanrek,

My heart hurts hearing about how you're still suffering this far out. Has your team reached out to other medical groups to try to get some answers? I agree with Irene that scar tissue seems the most likely culprit for the obstruction, but I'm sure they've thought of that too. The non-healing of the sores is particularly troubling. 

I'm sorry I don't have anything to offer except support. But I offer boatloads of that! Hoping your team will stop being flummoxed and get super proactive about finding solutions.

Hugs

Suz

Hi Irene, 

Thank you for the welcome and for your advice.  I've been using Intrasite gel then Activheal then Polymem then Flaminal Forte then back to Polymem again.   I haven't tried Polymem and Flaminal Forte together,  maybe worth a shot?  I've seen the TVN once a few months ago and was going to request a return visit as I'm still seeing the District Nurse once a week.   My toilet problems are down to the remaining growth I have at the entrance to my anus.  As I didn't have surgery the consultant explained that although it may reduce it would still remain.   I don't know if it can be removed but I'm seeing the consultant in 2 weeks so that's something I'll be asking.  

I realise I'm so fortunate that the cancer has gone but my life is very much on hold at the moment. 

Thank you for your support x

Thank you for the support Suz, it's much appreciated.  I did ask for a referral to Dermatology but was told that wasn't appropriate for my condition.   I have become a bit of a mystery  - having photos taken twice for research and teaching purposes,  it's a pity that hasn't lead to a solution so far.  That's why I'm here, in the forum, in the hope that I'm not unique and that someone somewhere will have had the same experience. 

X

Hello Nanrek sorry to hear you are still suffering after five week from treatment. I read on here when I was going through treatment that most  start to recover after two weeks when the new skin shows. My external skin was fine but it was very problematic inside my vulva and anus for up to four five weeks. I would use a soak powder for burns and itching called domeboro bought from Amazon which helped. I also suffered lots of toilet visits and was put on a FODMAP diet by the dietitian for three months which helped quite a lot. I have just returned from holiday and have received the results of a bowel test the did to check if bacteria was leaking from the small intestine to the large intestine and happy to say it’s fine. But I still have to watch what I eat now I’m on a normal diet. I am hoping time will heal but due for more tests. You will learn your triggers and just stay away from them. I is a challenge to get the balance right from swinging the other way and becoming constipated. Maybe you could speak to your doctor about trying the FODMAP. Good luck

1. Hi Jaycee, thank you for your advice.   I'll check out the soak powder and the Fodmap diet.  I'm glad that things seem to be settling down for you.  I'm just anxious after 7 months to see some sort of improvement.   Hopefully I'll be able to report back positively soon x