Hello ladies,
I'm a 26 year old who finished my chemo/radiation and brachytherapy in may for recurrence of cervical cancer in a lymph node after initially having cancer in 2015 and getting a trach to remove the disease.
in august I started with servere abdominal cramps which would not disappear and they have gradually being getting worse to the point of where I got hospitalised. He says because my lymph node was so close to my bowels when they did the radiation it has made all of my bowels and stomach inflamed. I have been back and had tests and seen my oncologist and many times and he has diagnosed radiation enteritis. im constantly in pain and on morphine that doesn't even work and at the point where I have lost 2 stone and I am hardelyveating as it makes the pain worse. (Even though I follow a low residue diet now)
it is physically and mentally draining me and I'm not sure how much more I can take. my oncologist is now referring me to a gastroenterologist for potential surgery and a temporary surgery. I'm a 26 year old who literally had no life and I'm not sure how much more I can cope with as I constantly live in pain. Sounds stupid but I had more of a life when I was living with this cancer.
Has as anyone else experienced anything like this or suffer with this from treatment?
Any information from anyone would be gratefully recieved
I don't have any useful answers, but I saw this and didn't want to leave without acknowledging you. It sounds as if you've had a terrible time, and I can see why it might fell so totally miserable, exhausting and demoralising. The only suggestions I have might be ones you have tried already, but I'll give it a shot.
I dont know what country you are in but I'm assuming the UK. Do you have a local 'Maggies Centre' or, if you are in (or can reasonably get to) the Bristol area 'Penny Brohn UK'? They specialise in holistic approaches to living with cancer and life after cancer treatment, usually with access to dietitians, nutritionists & psychological therapies among other lovely things. Just google them and see if they might be something that could usefully support you, they really have an excellent reputatation and it sounds as if that might be supportive to you at this time.
Being in constant pain is also awful. I wonder if your specialist nursing team/Macmillan Nurse can refer you to a specialist pain nurse or team? Most big hospital trusts have them, and they have an amazing grip on the range of pharmacological & non pharmacological strategies that could help, especially as your digestion is so sensitive and you might need careful choices & doses to protect your stomach & bowel lining and control the absorption possibly through another route. (Things like skin patches.) I would push hard for a referral to that kind of service if it exists, because there really is no need for you to be in continuous pain like this.
I don't know what else to suggest, but maybe some other ladies will have some ideas and drop by in a bit with their ha'pennies worth. *Sending a virtual hug.*
Thank you for replying it means a lot.
Im up in the north east in Yorkshire so I don't think their is anything close by like the centres you were mentioning.
I saw my oncologist last week and mentioned about the amount of pain I was in and he was basically robbing me off saying their isn't much more pain relief he can give me other than the oral morphine which I am on already.
im seeing a dietitian in 2 weeks and then back at my oncologist in 3 weeks but I'm not sure how much longer I can cope with the pain. I have been awake all night with wave like cramping going up and down my stomach.
Thank you you for your advice
Hi,
ideally would be best to solve the pain by natural remedies but in the mean time have you concidered trying another drug for pain relief. Some drugs work better with some and other drug for others.
ask for some high doses of tramadol and see if that works better for you.
Speak to your oncologist about different drugs available and don't be afraid to be pushy. You need something to help you through this and as you try new things try reducing the amount slowly as withdrawal pain can sometimes be mistaken as post treatment pain.
Good luck to you. No one should have to live with constant Pain.
Thank you for replying.
ive started taking manuka honey with hot water as I went into holland and barret and they said that is quite good for digestive problems. The guy who worked there took it for IBS and said it helped him. Being taking it a week now so not sure if it's making a difference yet or not.
They don't seem to want to help me with pain wise. I think it's going to take me ending up back in hospital in that much pain for them to actually do something.
Hi again
i also wanted to mention to you that once you have radiation the intestines stop producing types of enzymes that help the colon. Look into taking a probiotic. It might take some playing around to find out what works but if you can seek help from a natural dr or dietician this might be a route to explore.
All the best
Xxcharlxx
I've finally found someone with the exact same problem as me. However I am not on any pain meds and have to just live with it. I have drastically changed my diet. And my fluid intake is steady. However due to my medical history I cannot have any probiotics :(
This started during my 3 month treatment and after treatment it has become chronically worse. I cannot go out without a spare change of clothes as when I get cramps if I'm not next to a bathroom I won't make it. I have explained this to my oncologist and he has told me that this is my legacy for treatment. It has become impossible to go out, even taking my lil girl to school because I can't make it. ANY FOOD I EAT GIVES ME THIS EFFECT. I don't know what else to do? I have an appointment soon and I intend to push to get answers. I was also able to do more when I was having treatment and can not do anything now, without this pain. I hope we get answers soon hun
Sending a big hug and keep in touch
Harleekwin
