Bowel pain has been increasing since I finished chemoradiotherapy 7 weeks ago. It’s constant and I’m taking naproxen and paracetamol daily, but despite that it gets worse after eating even a small snack. It’s accompanied by a shaky weak feeling that turns my legs to jelly. I’m so weak I can barely do anything and my body is becoming more and more deconditioned which is impacting on my COPD, since weak muscles demand more oxygen.
on Olivia’s said he’d refer me to a gastroenterologist after my MRI mid July (when we’ll find out if the tumour has gone or not). They gave me an urgent CT scan last week and said they can’t see anything abnormal in the bowel to explain the pain. I’ve started reading about PRD. The pain doctor thinks it’s either neuropathic pain or ischaemic pain caused by radiation damage. Someone mentioned a drug with vitamin E that helped them but can’t remember the name of it. Need to ring oncologist and push for speedier referral - is it a gastroenterologist I need, even if it’s neuropathic? Anyone here tried anything that helps? Don’t think I’ve met anyone who’s had the same pain after treatment for vaginal cancer.
Hello AEW66
I hope you do not mind me replying as my cancer was endometrial, but I did have chemotherapy and pelvic radiotherapy.
When I had my radiotherapy I was told that after treatment finishes the side effects can become worse for a while and then will slowly improve as the healthy cells damaged by the radiotherapy grow back. At 7 weeks post radiotherapy I was still having quite severe bowel effects, so you are not alone. I found information from the Pelvic Radiation Disease society really helpful so will pop a link.
Pelvic Radiation Disease Association (prda.org.uk)
I am currently having checks every 12 weeks and the radiotherapy (and chemo) effects are being monitored. I was told that I could be referred to a special Late effects clinic if needed- but this would not be until around 6 months had passed- because during that time most people's symptoms will improve. That does not mean you are on your own with it though.
I was advised that contacting the radiotherapy dept was a good plan as they really are the experts and if needed they can refer on. As you are having so much pain and also feeling shaky- I do think you should contact them, or your CNS or GP. I do also recognise the shaky feeling and then need to use the toilet after eating. It can be really unpleasant and can hold back your recovery.
What helped me was to look at my diet. I continued with the radiotherapy diet for some time- anything high fibre would set off symptoms. Also I found I had to reduce dairy- I am still lactose intolerant. I did actually keep a food diary and also a toilet diary and looking at this with my CNS I was able to get my symptoms under control. With the toilet chart I used Bristol stool chart. I also noted any other symptoms- pain, bloating, gas etc. I found that I needed to eat at regular times and this helped with bowel issues.
I have neuropathic pain from treatment- mine is due to chemo- and there is medication that can help. This can also be a Late effect of treatment. Because it is a known effect from my treatment I did not see a neurologist but am just monitored at my regular checks.
I took Naproxen during chemo and did find it effected my tummy. I wonder if reviewing the medication would help. Neuropathic pain normal responds better to other types of pain relief.
Why not give the Support Line a call and talk things through with one of the nurses- the details are below, and they may be able to make more suggestions that would help.
Jane
Yes, a good idea to call them today and I agree you need to be seen before the August appointment. Amitriptyline and naproxen can cause constipation - they did for me when I took them. Senna can cause cramping so maybe they can look at your medication to rule out that being part of the cause. Maybe a different type of laxative would help.
When I had pain, it tended to be after eating and crampy pains which would pass after having my bowels open.
There is something I was told about called tenesmus so it may be worth asking whether there could be an element of that.
But most definitely, get checked. You shouldn't be regularly in this amount of pain and I hope you can get it sorted.
Jane
I did wonder about the medication you were taking. I was prescribed buscopan and it helped me (during and after radiotherapy)
I know what you mean about A+E- I would try NHS111 and see what they say. Out of ours doctor or Urgent care.
Diet is worth looking at. Not sure about liquid diet as I would think tummy needs something to work on and keep moving. I was advised plain rice, white toast, rice crispies- bland and plain food that was easily digestible. I also was able to eat small amounts of chicken/plain white fish. I did use Complan meal replacements on days I felt unable to eat.
If you are in pain tonight- i would call 111 for advice.
If you are managing tonight then perhaps call the Support Line and talk to one of the nurses about dietary changes that may help. Keep up with the fluids.
