Hi ladies,
Saw the colorectal doctor today and they want to do a colonoscopy before giving medication to see how far the proctitis extends in the colon. Asked how long the episodes usually last saying its been since january 10 but cant get a clear answer. Still having intermittent rectal bleeding with occasional clots, mucous and jelly. Appetite is completely shot and hard to eat anything but jelly, yoghurt, soup, toast and cornflakes. Supplementing with sustagen but still lost 9kg in 4 weeks. Least i fattened myself up when i was well! Having nausea, vomiting and bloating even though not eating very much but having the maxolon regularly. Still taking the probiotics but not much success.
Pain has been better but on a higher dose of targin and just resting . I Have another month off sick at work. As soon as i do small tasks im completely wiped out. My boss said i might have to look at my future in my position. So frustrating not knowing how long it takes to improve. Just trying to take the paracetamol and targin now but still need occasional endone.
See my radiation oncologist tomorrow again. Hopefully hes got some good advice on how long it takes things to settle.
Much love and hope everyone is travelling as best as they can xx
Hi all ,
Radiation oncology is starting me on prednisone suppositories for the proctitis. 3 weeks twice a day then once a day for a further 9 days to start with.
He has added an anti-inflammatory to my targin for pain relief.
He has referred me through to hyperbaric oxygen therapy for my vaginal necrosis and pelvic tissue damage and try and heal my damaged pelvic tissue. It helps with some cases.
Finally some progress. Yay!
Take care xx
Hi - pleased to hear that there is a plan in place. The hyperbaric oxygen therapy sounds interesting. I hope the treatment helps - feeling ill is rubbish.
take care x
Thanks Susan 
xx
The hyperbaric oxygen therapy takes about 2 hours day. Monday to friday for 30-40 sessions. Kind of like radiation.... daily visits but longer . I just have to wait for the hospital that does it to get the referral, but the 100 percent oxygen therapy is supposed to have some success with necrosis.
I think it sounds very hopeful and as you are in discomfort at the moment must be worth a shot. I read a lot since my crappy diagnosis and am sure I saw that someone else had this treatment and it had helped them.
Fingers crossed x
Hi Bexter,
I have no useful words of wisdom to impart but I wanted to drop by and let you know that I have been reading these posts and checking for updates. Thinking about you and hoping for some improvements very soon. x
Thanks Cheery means a lot xx Things are more positive. Stronger narcotics controlling pain better and they are treating the proctitis now and hopefully the necrosis and extensive pelvic tissue damage with the hyperbaric oxygen therapy.
Hi Bexter, Glad things are looking more positive now and the hyperbaric oxygen therapy sounds interesting. Great that the pain is under control too. x
Hi Bexter,
I also have Proctitis but it’s not Related to radiotherapy. I was diagnosed with it last July after experiencing all the typical symptoms and a colonoscopy confirmed it. It took 5 months before we finally found the right medication to kick it to remission So please don’t be disheartened if the suppostries don’t work. I tried 2 different types, enemas and finally foam. I also have to keep my fibre intake down.
I’m sorry you’re going through this on top of everything you’ve been through and hope it clears soon Xx
Thanks Sam,
I will keep that in mind. Proctitis certainly isnt pleasant! I am just so happy to start some form of medication finally 3 days ago. Since its been untreated since January 10th because they wanted to do procedures and biopsies and await consults. Even the colorectal surgeons werent going to medicate until after the colonoscopy. ..which im not sure when it will be. It wasnt until my radiation oncologist said it would be best to start treatment now. My gp was the one to get my pain from necrosis under control as the gynae onc didnt want to delve into radiation induced issues. I see my radiation oncologist again in 6 weeks to discuss my progress.
Xx
It’s great that they’ve started you on something already. Fingers crossed they work for you ASAP. I found that the longer it went on before treatment was given the worse my symptoms got.
So pleased to hear you are finally getting some support and help!
I’ve been on prednisolone now for 3 weeks, I take 3 orally and have to use a foam form internally, it’s not cured it but has certainly aided the pain and discomfort, it’s all been down to my gp that I’ve got this far as I’m still awaiting to see a specialist!
hope things keep going positive for you xx
Thanks shell
I don't know what i'd do without my gp. She's the one that got my pain better so i can at least rest with it. The targin is now 15/7.5.
The predsol seems to Make the rectal pain better when i have it. Still have bleeding on/off. Had it yesterday with small clots. Appetite is still really bad and most foods including soup giving abdo discomfort. I'm just taking 5mg predsol supps twice/day at the moment. Had a crappy day yesterday with nausea , bloating and vomiting. The leaflet says it takes several months to work with radiation proctitis.
The hyperbaric oxygen treatment which i am waiting to see another hospital about is supposed to help with the proctitis aswell as the necrosis .
All the best shell xx
Saw the hyperbaric team and they have assessed me as fit and suitable for hyperbaric oxygen therapy but they want the colonoscopy first. Only problem is the waiting list for the colonoscopy is months so they are going to contact my radiation oncologist to get a sigmoidoscopy in the mean time. They want a diagnostic result on the proctitis even though i have the symptoms. So there will be more waiting in the meantime . The treatment will be 30 sessions (but may extend to 40) monday to friday for 2-3 hours per day. It takes usually at least twenty sessions to feel an effect. But like radiation it can have ongoing effects for a few years. They said that the rectal bleeding may get worse before better as my body tries to rebuild micro vascular vessels.
