Gutted and scared can I have a glass of wine?

Oh Jaycee, I'm sorry you can't have the occasional gin and tonic (my tipple too!)  My problem is battling constipation and I am not affected by alcohol.  Mind you, my taste buds have changed after treatment and I struggle to find any food and drink that really take my fancy.

Irene xx

Irene75359, I'm exactly the same as you, constantly battling constipation, in dire pain 24/7 and no-one, even my consultant, who I saw as an emergency on Monday, can tell me why I'm in bad pain over two months after the treatment has finished. I was having whisky with my ibuprofen for the pain, but now I'm on Lorazepam and Sertreline anti depressants, so can't have alcohol any more. Appetite same as yours, I lost a stone in February and am now on these fortified milk drinks on prescription. How are other things with you painwise? x

Oh Jester, I really do hope it does eases off for you soon.  I posted on the forum nine weeks after my treatment ended: (I am a year on).

"I finished my course of chemo/radiotherapy nine weeks ago today, and I hoped I would be feeling better by now.  But having a bowel movement is still like passing hot broken glass, and because of narrowing of the rectum, I probably go three or four times and am unable to do anything much before lunchtime as the pain continues for at least a couple of hours.  I saw the consultant a couple of weeks ago and he wanted to do a rectal examination and I started to cry; I am no coward and can normally stand pain, but in addition to extreme pain in the anal canal all my childbirth piles have returned with a vengeance.  I can't even insert the Instillagel nozzle for pain relief.  He was very understanding and didn't go ahead but noted I still had external splits in the skin.  He suggested using the morphine syrup but I had such chronic constipation with it (and also Codeine) that I stopped both.  Lactulose went straight through me, as did Laxido.  However I found a video online by a Royal Marsden consultant who advised Normacol granules to soften stools and the effect has been amazing; after eight weeks of varying degrees of upset bowels, I mainly have normal soft stools, but still with the accompanying severe pain.

Is there light at the end of this tunnel?  Going to the loo and the accompanying problems seem to taken over my life."

I am really sorry I can't pinpoint the time but probably three - four months after treatment ended my life improved dramatically; it wouldn't be true to say I have gone back to how life was 'BC' (before cancer), my bowel movements still give me mild discomfort and I avoid constipation at all costs, my stools are still pencil-thin but I still take stool softeners (not laxatives) every day which helps with the narrowing of the back passage which is as a result of radiotherapy.

One of the registrars I saw at the three month check also couldn't understand why I was having ongoing problems, but now, having seen some other posts, I realise I am most definitely not alone.  I afraid the Normacol granules that were my mainstay for the past year are now unavailable and I am now having Laxido once a day, and a small glass of prune juice when I wake up.  It invariably gives me diarrhoea very quickly but for me, anything is better than constipation.

I am really hopeful that easing off of these really debilitating symptoms are just round the corner for you.  Hang on in there, Jester, and come back here if any of us can help at any time.

Irene xx

• Thank you Irene for your honest reply. I'm in about week 10 post treatment and your description of pooing broken glass is all too familiar. i will start the Laxido again then, but I find the Fortisip drinks tend to go through me a bit. I'm on them because I lost a stone during February and, like you it's difficult to find food that tempts me - I was always a savoury person, but now crave sweet stuff all the time, Were you in constant pain 24/7, I am. Thank you for your kind support, we all certainly need is as there's precious little from the medical profession. Also have you had your post treatment scans to know if you're clear? x

Hello Jester - in the early days, yes I was in unremitting pain.  Not any more, I am really happy to say.  Still wince a bit having a bowel movement but not like the early days when I felt my anus (sorry TMI) was on fire and literally throbbed for hours afterwards.  I really try not to dwell on what life was like before.  I am happy to be in the here and now!  And at my last scans all was clear, thank you.

Irene xx

PS  I also lost a lot of weight after treatment, very little could persuade me to eat and I had a supply of Ensure Plus, liquid drinks that give you all you need.  I am happy to say that although my taste buds have changed in that I don't crave certain foods any more, I do eat quite well and have put on the weight that I lost (my husband prepares a lot).  Really, things change day-by-day - it is just getting there!

xx

Hi GreenNanny , 

I’m sorry you’re going through this right now & although I can’t comment on your particular situation what I can say is there’s been many people on this forum that have gone through the same as you’re going through, many have had EUA’s & biopsies done & found that the area of concern has turned out to be scar tissue, hopefully this will also be the case for you. We’re always here to support you however we can. 

Nicola

Hello again Irene. Thank you for filling me in and giving me some hope for the future. It's so hard living in endless pain isn't it. I did walk my dogs yesterday & the day before, trying to get some normality back, but have paid for it with pain. How I long for a life other than lying on the sofa all day. Could you sit at all? I can't, it's either stand or lie down. Thank you for your support as I have none from the hospital at all. xx

Hello Jester

I could sit, but only on a blow-up cushion.  In fact we went off last July to Spain and I carried a soft cushion to sit on where ever I went, a lot of the chairs there are just plain wood and I couldn't bear those, nor the plastic chairs in bars.  At one point, we joked here on the forum about giving a loud gasp of pain every time we tried to sit in the early days after treatment.    I am typing this sitting on a rigid bar stool with no pain whatsoever.  I am sure you will reach this point Jester.  Please let us know how the treatment goes.

Irene xx

Thank you again Irene. Under normal circumstances I can't sit on a wooden or plastic chair - my bottom has no flesh on it and if we're going anywhere I'm unfamiliar with a take a cushion. Someone on a local giving group gave me a proper donut cushion which I can manage for a few minutes to eat, but no more.