Hi Everyone. I'm an anal cancer survivor, 18 years out from treatment. I attend the PRDA online chats but haven't posted here before.
In August I had a major PRD flare up, with large amounts of mucous and repeated bowel accidents. My GP referred me for a flexible sigmoidoscopy which found two polyps. I was then referred for a full colonoscopy and polypectomy. That took place two days ago.
The procedure was difficult and protracted. Bowel loops caused the endoscopist significant problems and, despite the sedation, I felt a lot of pain. They had to give me a second type of sedative plus copious gas and air. I vomited bile during and after the procedure. They found seven polyps, all of which were removed using a cold snare.
Four hours after the procedure I passed large amounts of clotted blood, so my son took me to A&E. I continued to pass clotted and fresh blood for several hours, during which time they did repeated blood tests to monitor my haemoglobin levels. They had a blood transfusion on standby but, fortunately, my haemoglobin remained high enough to avoid this and eventually the bleeding stopped.
Since coming home I have had several more episodes of passing significant amounts of clotted blood but things are gradually calming down. However, I feel very sore inside and, at times, the pain is strong enough to make me feel sick. I'm concerned that, when bowel movements resume, they are going to aggravate the polypectomy damage to the bowel wall and make healing difficult. I'm wondering whether I should restrict myself to a liquids only diet and, if so, what I need to include for proper nutrition. Also, if anyone has had a similar experience, I'd be grateful to know how long it took you to recover and what helped you do so.
Many thanks for any replies.
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Bluegenie
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I literally had a colonoscopy yesterday, so I was immediately drawn to your post today. I’m so sorry to hear you had such an awful experience.
I’m afraid I don’t have any immediate advice, as I’m just waking up to the day after, though I’m sure someone will shortly. I just wanted to assure you that you are not alone, and your experience not unusual. My procedure was also extremely painful, far worse than I had expected - the doctor in charge said it was probably because I have adhesions from radiotherapy. The pain relief and entonox (gas & air) were insufficient to dull things, so I was too dvistracted to be able to move around as they wanted, and needed to be shoved and pushed into place. I was very fortunate that there were no polyps, and I’m waiting for the results of the biopsies.
I quite understand your concerns about eating, and if I were you I’d probably stick to the low fibre diet they recommended before the colonoscopy and check with your GP to ask about stool softeners for a while. Just anxiety can upset the gut, and you have good reason to feel anxious at this point. In theory the hospital should have covered post- surgical diet, but they don’t seem to always.
A good old fashioned hot water bottle and a glass of wine or a g&t, if you like it, is both a comfort and a relaxant, meanwhile.
Anyway, sympathy and good wishes for a full recovery, and keep in touch here at the forum.
Know exactly what you mean Skellige, I had a colonoscopy last year and suffered in exactly the same way. I wasn’t expecting this as I have a very high pain threshold, but after the event I read that anyone who has had a hysterectomy/radiotherapy (I had brachytherapy too) should be offered a general anaesthetic as not only will there be adhesions but the bowels “drop into the spaces left” by the hysterectomy, making it even more painful. In other countries a G.A. is offered as a matter of course.
To Bluegenie, I don’t think you can beat a hot water bottle as pain killers inevitably cause constipation, and maybe for a short time take the milkshake type drinks such as Ensure
That’s very interesting, thank you. I wondered if I was just unlucky, but the pain really was almost unbearable at times. I was told I had to be conscious as they needed me to move from side to side and lay on my back for some of the time. Once they were right past the lower bowel it was bearable. I did mention radiotherapy a few times to the nurses and to the doctor doing the procedure, but they seemed only vaguely aware, or perhaps, in retrospect, they just knew it was going to be a bad one and wanted us all to get it over with? I think I may have used up the entire county supplies of gas & air! I wish they could have used more pain meds - if I ever have to go through that again I’d be better informed and more insistent.
It would be great if there was some info on the site you could take along - lots of us must need to have this procedure …
I thought my condition was bad but it's nearly as bad as your situation. I first protracted PRD 18 months ago after pelvic radiation.
It was not improved by a subsequent sigmiodoscopy. In fact after the sigmoidoscopy bleeding got much worse to the extent that I felt that I could barely leave the house for fear of filling my pants.
A couple of months ago I had another sigmoidoscopy after which I was immediately booked in for yet another sigmoidoscopy that hasn't yet materialised. Running parallel with this is a rapid reduction in my iron levels that leaves me totally without energy and often very light-headed when I am standing. The surgeon states that my iron levels have nothing to do with my PRD. The oncologist initially said that the iron loss was due to excessive anal bleeding but is now referring me back to my GP for the iron issue.
Since having my last iron infusion I have lelt more capable of helping myself and I am trying to do some home exercise that makes me feel that at least I have some control over my body rather than having to depend on medics to determine every facet of my existence.
Whatever my exercise is doing physically at least in my mind I am stopping my condition from getting worse.
Thank you to everyone for your kind and helpful replies. It makes such a difference knowing that others have experienced similar things and that we are not alone.
I've spent much of the past week sleeping and have stuck to a low residue diet, as well as using microwave wheat bags rather than painkillers. Normal bowel movements have resumed, there's not too much blood and the pain has gone, so I'm hopeful that the worst is over.
I've been told in the past that bowel pain I experienced was due to adhesions after the radiotherapy, so it makes perfect sense that adhesions would also make colonoscopies pretty intolerable. The endoscopist this time said that I was to have virtual rather then physical colonoscopies in future. If the virtual colonoscopies find more polyps, I shall ask for them to be removed under general anaesthetic.
Like you, Housebound, I'm trying to do a bit of exercise and up my energy levels, as even just a week of bed rest has been bad for my strength and muscle tone. I hope you will continue to recover, so that your user name will no longer be appropriate.
Hi everyone I had treatment for anal cancer in 2010, I am also on a three yearly bowel cancer screening, my first colonoscopy post treatment was carried out by a very experienced surgeon at a specialist cancer hospital, they stopped the procedure part way through because of RT after effects and referred me for a CT virtual colonoscopy. Since then all have been done this way it’s definitely more tolerable, I apparently also have a tortuous bowel which doesn’t help either, who knew 🤷🏼♀️
I've just found your message. I had Chemoradio for Anal ca in 2008. Problemsfrom RT damage usually managed or treated Coloniscopy last week found tortuous and looped colon. The Doc doing procedure couldn't get past caecum, screen showed large knotlike obs truction. I haven't had any feedback from Consultant yet so have put myself on soup and Ensures to avoid blockage- I was in ED for this 2 was ago! Masses of laxatives eventually unblocked and pain subsided, but still feel it especially at night.
I feel it should be urgent as bowel could be damaged/die. But they're not rushing. I'm going to contact my GP tomorrow and the Consultant secretary. Thanks for posting.
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