New Member

[Msdoubtfire]

hi there.

I have just joined this group in the hope of finding some support.

I was treated for cervical adenocarcinoma seven years ago and this included radiotherapy and brachytherapy. I was treated by the late effects clinic at the oncology centre and later discharged as they had taken me as far as they could.

my symptoms have gradually got worse over the years and although I am fit and well the bowel symptoms are so painful and debilitating. I can’t get to work and don’t get out much.

I have been seen by gastroenterologists but they have ran out of treatment options. I can’t get on top of so many other late effects because my bowel is so bad .

I carry a radar key and a just can’t wait card.

anyone any advice on how to cope and maybe have more of an active life?

[Jimbo65]

No! Don't take no for an answer. There has to be something that can be done to improve your quality of life. Never put up with pain. Having said that I'm several years ahead of you and in the last year my bowels have definitely got worse. I had a breath test in February which was positive. I waited until June before NHS actually gave me a follow-up and prescribed antibiotics. Not clear how they thought this was going to be a miracle cure. Anyway, needless to say it didn't make much difference. Get to see a Dietitian. A fodmap diet definitely helped me and I now avoid certain foods that I know trigger my chernoblys (my term for explosive diarrhea). Exercise really helps. Look for a seated exercise class if you can't face standing exercise. Go back to GP and the late effects clinic and tell them that your quality of life is shit, literally! There has to be something else to try. Hang in there. Xx

[Msdoubtfire in reply to Jimbo65]

Thank you so much.

I feel as if I am in a viscious circle that I keep trying to get out of and can’t. Motivation is there but I keep hitting brick walls.

I eat a very low fat diet as they have diagnosed bile acid malabsorption but I will look into fodmap diet. If I could get a wee bit of weight off it might help my pain but I hardly eat at all. I will ask for another referral to a dietician. Thank you! x

[technobabe in reply to Msdoubtfire]

Did you get a prescription for Cholestyramine to help with bile acid?

This really helps with diarrhoea.

[Gingerurgent]

Msdoubtfure,

Following a return of my prostate cancer six years after radical surgery, it returned in the prostate bed and local lymph’s, I had twenty beam targeted radio therapy treatments.

Subsequent to treatment, with follow up only to the side effects of the hormone therapy, I discovered this site and became aware on here of “Pelvic Radiation Damge”

Bowel functions became “urgent”, lovely term, and flushes were only addressed with acupuncture.

Started to treat myself with Loperimide, and experimenting with the dose I find one every morning helps greatly. I’ve subsequently got this on prescription. Still urgent but now reduced to three events daily and with diet control/ care I can manage.

About a month ago my left leg below the knee swelled up to an amazing size, no pain but it was diagnosed as lymphoedema. Now they tell me this is to be expected as the lymph nodes are badly affected by the radiation , “sleep on your back with your leg raised !” Menopausal hormone events have given me chronic insomnia so attempting to sleep in this position is a breeze! …….I’d kill for a breeze. ….lol

I understand our cancers are different but the pelvic damage results sound familiar.

I can’t recommend Loperamide enough and apparently you can get up to quite high doses with no apparent side effects, trial and error was the only way I found a dose that worked for me.

Good Luck.

[JDKPA]

I also take Loperamide daily and 3 doctors have told me that this is okay. I l ike the liquid Imodium as I feel it works faster. I am taking magnesium because my tested level for this is deemed "critical". The magnesium causes the runs, and most days my combination works. Magnesium at night for its supposedly sedative effect and Loperamide in the morning, and more as needed.

[Msdoubtfire in reply to JDKPA]

Thank you for replying. I used to use liquid immodium because it could take smaller amounts more often.

I will discuss going back to this more often with my GP and look into magnesium too.

Thank you so much

[Sing72 in reply to JDKPA]

I had to give up with magnesium as it made my diarrhoea much worse. I take Immodium when I have an attack, which is every other day. I too get it on prescription.

[Msdoubtfire in reply to Sing72]

thank you

[JDKPA in reply to Sing72]

I had to play around with the combo for a while to figure out how to best use magnesium and Imodium. I had given up on magnesium years ago for the same reason as you. Finally found that taking 500 mg of magnesium at night and Imodium in the morning makes me somewhat regular. However, all bets are off if I eat the wrong thing. It is paying off for me as my magnesium level went from 1.0 to 1.5 in three weeks, which is amazing. My level has never been higher than 1.3.

[Eee123]

I received the same treatment 5.5 years ago and my own "late" effects started immediately during treatment and worsened over time. I am sorry you are having a hard time with your bowel. Take heart, there is hope on the horizon. The oncologists and gastroenterologists do the best they can for us with the knowledge they have and get to that point where my gastroenterologist told me, "At least you are still alive." At that time it was both frustrating and annoying as I answered in my thoughts, "I am not alive, I am dying - because I was rushing to the bathroom at least 15 times a day with heavy blood coming out of me. Although I was sure I was dying and no one could help me, I was wrong. I continued looking for help and encountered a Functional Medicine Specialist who advised me to stop eating many "innocent-looking" and nutrient-laden vegetables, fruits, protein and carbohydrate foods which belong to the high fodmap, high histamine and nightshade food groups. I remained with very limited food range that I could eat. By the end of the first 10 days, my bowel had stabilized. He also prescribed food supplements/nutrients for me to take. He saved my life. That was 4 years ago. I can do anything I want as long as I keep away from the food my gut is sensitive to. If I crave any of them and fall into the temptation of eating any of them, "I pay/suffer." I do not need or use any anti-diarrhea treatment because I do not get diarrhea anymore. My bowel is behaving normally. Please search on the internet for any Functional Medicine Medical Doctor within your reach geographically, I am confident s/he will help you. Take heart, you will be well.

[JDKPA in reply to Eee123]

What CAN you eat? So glad you found an answer!

[Eee123 in reply to JDKPA]

Rice, steamed green bananas, zucchini, carrots, free-range chicken, salmon, tilapia fish, red grapes, jack fruit (ripe), half-ripe bananas. not much, I know - but great relief in being free of the endless gut-related issues and associated stress.

I do not eat anything beyond what I have written above, e.g., I do not eat onions and garlic, avocado, spinach, etc.. Please consult a Functional Medicine Specialist to guide you, I am just answering your question. You will be fine before long by God's grace.