Newly Diagnosed. Upset, angry and terrified

Much appreciated Terry. What was your Gleason numbers and T staging diagnosis?

Hi John, I've had Proctitis, for about 18 months, and up until recently apart from a little blood from time to time, it's been ok, very few continence issues either, but lately, it's worsened, slightly more continence issues, but manageable, but much more bleeding. I have always self regulated with docusate and movicol, and ate carefully/healthily as I have level 5 dysphagia 

I had a colonoscopy and endoscopy, which showed a slight weakening of the rectal walls, and they were concerned about possible fistula's, so was put on sucralfate enemas for a month, to be followed by glucocorticoid suppositories with HOT, hyperbaric oxygen therapy, with formalin therapy if needed.

I noted you said you have lower abdomen pain, if your taking Alendronic Acid, this can aggravate your duodenum and pylorus, which could be responsible, I switched from them to Zolendronic acid IV, and the discomfort disappeared. My diagnosis is radiation induced hemorrhagic proctitis, which I understand may not be yours, but hopefully there's something helpful in my post for you 

Eddie 

Hi Eddie. Thank you very much for your very thorough and detailed account of your situation. It is immensely helpful. No blood (yet) as the blood I thought I’d passed was, in fact, haemorrhoids. My proctitis is mucus discharge, urge to go to the toilet much of the time and, recently, lower abdomen pain with toilet visits every 1-2 hours. The only way I slowed it down recently was not to eat. So I’ve lost 8 pounds in a week but the suppositories have helped which I’ve now stopped and I’m now eating with some normality. I have a sigmoidoscopy booked for the 3rd July. I’m hoping it’s mild and treatable but one can only hope. All said and done, it is what it is. Thank you again. Your reply and well wishes are much appreciated. Best Wishes on your journey which sounds tough I have to say, John 

Hi John, not 100% reliable, but having had haemorrhoids for many years, if blood is more obvious on the tissue, it's much more likely to be haemorrhoids, I hope your not having supper my friend.

Eddie 

Replying to (John) jpmjig and Brian. Since my radiotherapy to secondary tumour in my iliac bone I have suffered from Proctitis which the Gostrologist states in now chronic as it has gone on for well over 2 years. Pads, urgency and 'planning' outings are required and is part of my life. After 4 sigmoidoscopies at 4 weeks apart and a Haemostatic agent inserted (Purastat) to the lesions it stopped the bleeding thankfully. As Brian states I was asked to join the research programme @ Newcastle University titled Colo-Spirit ( Management of  Radiation Proctopathy) which I did. As far as my situation goes I regard the issue of part of my daily life and manage the best way I can. The bleeding has not returned but the lack of bowel control has stayed. Worth mentioning Purastat to you Consultant Gastrologist. It is a relatively new treatment. The process involves a 'special' enema (not the one to empty your bowel but to line it) and during the Sigmoidoscopies small amounts (it is expensive I gather but told we are 'worth it', haha) of Purastat are applied the the lesions to curtail the bleeding. Hope this helps JPMJIG (John.) Thanks Millibob (Brian)

Best wishes, Graham. 

Thank you Graham. Much appreciated 

Thanks Graham (BoroG) 

Thanks for that - I trust you are keeping well. I am still coming down from my day out at Wembley - over 3 weeks ago but what a magic day.

Kind Regards - Brian.

Hello Brian. I go to the Macmillan incureable cancer group now at our local hospice @ Stockton. It is a lovely group with people with all different cancers. We have speakers come and give talks on a range of things from diets to palliative care and more. As for the football so pleased you enjoyed your Wembley visit. I have been with The Boro' 6 times and never won. We won our only cup in Cardiff when Wembley was being rebuilt. Enjoy the coming season Brian, fixtures out today, take care, with best wishes, Graham.