Nine weeks after chemo/radiotherapy and still very painful

Hi Irene,

I'm afraid I haven't any really helpful advice for you but just wanted to say hi. I finished my treatment just before Christmas and although I did have some discomfort going to the loo, it was never anything like you describe, and now I have no pain at all, although I do still go a couple of times a day. I think you should get back to some of the people involved in your treatment - the radiotherapists who did mine were really helpful and if I had any problems now I would refer back to them; I just don't think you should be in such pain. Your consultant is obviously aware and does not seem to feel there is any issue of concern, so I would try some other routes to get some relief, even if you just go to your GP and stamp your feet a bit. Severe pain like you describe is just not acceptable.

Good luck

Thank you for your reply.  I am wondering if my recovery is it is to do with the dose of radiotherapy given.  I did talk to the consultant and the cancer nurse about the pain, and they both urged me to take the morphine syrup.  But early on after the radiation treatment ended I found out that morphine can cause life-long constipation problems, and that worried me so much, as well as how I felt at the time, that I stopped taking it.  My thinking was that I can bear this if it is only for a couple of months.  I have another appointment with the consultant tomorrow and will mention it again.  Failing that, my GP is lovely.  Encouraged to hear how you are almost back to normal!

Yes, I would agree with you that if morphine syrup makes you constipated you probably ought to give it a miss - probably jus adding to your problems.

Did you have a particularly high dose of radiotherapy? 

Have you tried pooing into cool water? I am sure I have read about this on here - if you bought a sitz bath and poo'd into it, it might ease things a bit. Or use a HappyPo to gently squeeze cool water over your bottom as you go. I have both of these and found them helpful at different times. I still use the HappyPo as it is much gentler than rasping away with toilet paper. Ouch. Oh, and I understand coconut oil baby wipes are soothing too.

I don't know the strength of the radiotherapy I had - another question to ask tomorrow.  Yes, I have tried used the Sitz bath and cool water as a loo, and I have the HappyPo too.  What helps (a little bit) is making a cold compress of folded loo paper and pressing it close over myself as I go.  I can bear the pain for a few minutes, but it is the continuing throbbing hot pain that continues afterwards that is so debilitating.  I am wondering if I have an anal fissure - the NHS site says it causes sharp pain when you poo, often followed by a deep burning pain that may last several hours.  There is no treatment for this however, apparently it heals on its own.  Thank you for the tip about coconut baby wipes, I will definitely try those.

I was originally diagnosed with an anal fissure and it was because it wouldn't heal that I was referred to colorectal surgeon and diagnosed with tumour after a colonoscopy.

There are a couple of types of cream GP can prescribe for fissure, so I would def head back there if that is what you think you have, don't think you should wait for it to heal on it's own if you can have some relief sooner.

Keep us posted of how you get on. :0)

Hi Irene, your situation seems very similar to mine. I have the excruciating pain when I use the loo. After I’d finished my radiotherapy the burns around my anus and the groin were terrible, with constant weeping from the burns. I was prescribed instillagel as a local anaesthetic which does help once the initial stinging subsides. To help to heal the affected area I was given Flaminal gel/cream and that has worked like magic in getting the burnt skin to get back to normal, but I still have the agonising pain when pooing. I take liquid morphine as and when required and I also take zoomorph time release capsules, two every twelve hours and pregabalin one every twelve hours. I control the constipation with movicol but sometimes it works too well. I have little or no appetite for food and find myself forcing food down. I have lost two and a half stone as a result. I go back to Christie’s for a PET CT scan and MRI scan in around two months time to see if the treatment has done it’s job. I have fantastic neighbours, one of whom is a nurse which is a good job because they can hear me screaming when I’m having a particularly tough time on the loo. 

Hi sorry to see your in pain, iv always suffered with severe constipation, and was given a colostomy before my treat started so not had the pain when trying to go to the toilet. 

I don’t know what I would of down without the oramorph, I agree it can make you constipated however iv never heard it can cause it for life as once you stop taking it your bowels should go back to how it was. I personally would not worry about the future and start taking it you need the help now with the pain,

I’m also taking Cosmacol to help with my constipation, so maybe speak to your dr and explain the oramorph which you do need for your pain is making you constipated and can you have a stool softener hope this helps x x 

When I had the telephone appointment with the registrar after my post above, he prescribed prednisalone rectal foam to use after a dose of the morphine syrup.  I still didn't take the syrup, and with some difficulty because I am so engorged with piles as well, I managed to insert the applicator of the steroid, and it really has given some relief from the pain.  The doctor said it reduces inflammation and I think it may have helped with my piles too.  When I first finished radiotherapy I was taking everything you are with the exception of Pregabalin but now only take paracetamol, so although it doesn't feel like it there must have been an improvement.  I lost a lot of weight as well and have now regained a bit.  It is a really tough time but it will get better, my family were also used to hearing loud groans from the loo.  Wishing you the best results from your scans.

Thank you.  I have replied to Neilsbum above giving an update - life is a little better.  Thank you for your help.

Things are a bit better now, I am using Normacol daily which is a huge help and have managed to get by without resorting to the oramorph.  Please don't think I am making a virtue out of doing without painkillers!  Suffice it to say my daughter had to come round and give me an enema as I lay on towels on the bathroom floor.  This was in spite of Lactulose, Laxido and Sennacot.  I really thought I would have to go to A&E and the whole experience was so awful (I still have the piles to prove it) I stopped the oramorph that day.  Thank you for your help x