Please help, rectal cancer recovery

[Joan214]

Hi everyone, this is my first post.I am 65. I was treated for rectal cancer last year. I had Papillon treatment followed by 5x5 chemoradiotherapy.

I seemed to be recovering quite well until December when I had a sigmoidoscopy and polyps were removed.

I have trouble finding anything I can eat that doesn't either make me constipated or have diarrhea. I'm in a lot of discomfort and have wind and lots of mucus . My mobility is dreadful, I was a walker as have always had dogs. I have been at work for 6 hours today and have come home to bed as can barely stand due to back pain.

I have a colonoscopy in a week or so and I'm dreading it.

I would be so grateful for any food tips or tips to help with the discomfort or advice as to how to get help . Thank you.

[Crossing41]

Joan, you have been through a lot! I will hold you in my thoughts for improvements. When I was having similar symptoms I saw a nutritionist who taught me about a low residue diet. It is no panacea but has helped me. I make an oatmeal peanut butter bar that works for breakfast and a banana, canned peaches and pears, spinach, green beans, cooked carrots and lots of chicken and fish. No raw veggies or fruits with pulp. I still have to use Imodium when I have diarrhea though and I am a candidate for colostomy which I have said no to for now. It does take time - can you work from home? I ended up finding a job very close to home with enough flexibility to go home on the bad days. Now I’m retired and everything is easier. I also have a colonoscopy scheduled in a few wks. Hang in there and don’t give up seeking new treatments and ways of being in this post cancer reality.

[Joan214 in reply to Crossing41]

HiThanks very much for the reply Crossing41. Those peanut butter bars sound good. I have porridge with banana for breakfast but they would be a good alternative 😊

I only work one day a month in an antiques place where I sell stuff, the day there helps pay for my shelf space. I really don't want to give it up as it helps me feel normal and forget I'm 😕- but I'm wondering if I'll be able to cope with it when the hours increase in the summer.

[jude-the-obscure Community Pioneer]

Joan, so sorry to hear of your difficulties . I had a colonoscopy some years ago which showed damage to my descending colon caused by radiotherapy and maybe adhesions from pelvic surgery. I try to eat as normally as possible and have milled linseed on my cereal every morning, I used to take Fibogel too but that gives me diarrhoea these days. It is a balancing act between constipation and diarrhoea but I do get good patches. Anxiety upsets my intestines badly . Its not just food but mood I'm afraid! The bowel has its own nerve supply and will respond to bad vibes. (A gut reaction!)

A second gastro enterologist has asked me not to allow any further intubation of my rectum and colon. I expect you have asked for good reasons why they want to do the colonoscopy.

Thinking of you and hoping things will settle down in due course

Very best wishes

Jude

[Joan214 in reply to jude-the-obscure]

Hi Jude, thanks for the reply . I'm sorry to hear you had problems after radiotherapy. I seemed to be improving quite well until the sigmoidoscopy and then suddenly things slid backwards rapidly. The same consultant is doing the colonoscopy and I'm afraid there is what is sometimes called a clash of personalities between us. I'm very grateful to him for what he's done for me but it remains very awkward. As the Papillon treatment I had (with another consultant)is non standard I have to have six monthly colonoscopys for 2 years. Not sure if I'm going to cope with it to be honest. Interesting to hear that you have been advised not to have more intubation.

[Housebound]

Dear Joan214

Firstly please don't dread the colonoscopy because it is a fairly rapid and painless procedure (presume you will receive something to put you to sleep for the duration).

Like you I was always a walker because I have always had dogs but now find it is more difficult because of tiredness. Now we go for shorter walks.

I suffer from regular bouts of constipation and I find that whateverlaxative works for me for a couple of weeks or so may not be so effective after a short period. Accordingly I change the laxatives on a regular basis and that is reasonably effective. My gastroenterologist has advised me to take laxatives once or twice weekly regardless of whether I feel the urge just to try and create functioning regularity.

Wish I could give more appropriate advice.

Kind regards

Housebound

[Joan214 in reply to Housebound]

Hi Housebound Thanks for replying to me.

The first colonoscopy I had was relatively painless , with gas and air, and I had no qualms about having the sigmoidoscopy but it was a very painful experience, they removed polyps and made me bleed and had to peg my colon to stop the bleeding.

I am hoping it will be more straightforward next week and trying not to get too stressed about it. The problem is if I have more sedation than gas and air I have to stay in the recovery section of the hospital and I'm usually champing at the bit to get out of there 😊

At the moment my bowel problem is mainly mucus and wind and diarrhoea, but I do have constipation at other times. Its definitely a take each day at a time isn't it?

Glad you still get out for walks with your dogs. I still go but find it uncomfortable as usually walking makes me need the loo 🥲

[Housebound in reply to Joan214]

Dear Joan214

I understand how you feel about having the urge to go to the loo when you walk. Radiation has left me with severe proctitis so I feel insecure whenever I leave the security of being at home near al toilet.

Over time I have learned to limit the time I can be away from my home and also when I feel confident that I can go out without the risk of pooing in my pants. It's so restricting but the alternative on never going out at all is even worse. Now you know why I call myself Housebound!

Kind regards

[Joan214]

Hi Housebound 👋 Yes I understand completely why you chose that name 😅. It's horrible because it's an invisible problem and my friends keep telling me I look so well, when in reality I'm really struggling.

Still, I'm alive, so I focus on that and tell myself I can still enjoy somethings, just not so many things😊

Can I ask how long it is since you had your radiotherapy? Just wondering as everyone keeps telling me after a year or so things will get better, and I finished mine last August. As I said , after the sigmoidoscopy I went rapidly backwards, and I'm wondering if it damaged my colon .

Thanks 😊

[littlelinda50]

Try adding Probiotics and Prebotics by supplements. Also discuss this with your doctor too. I eat yogurt covered raisins when I am constipated. If I get bad I take one stool softener which helps. Good luck finding a solution.

[Lamados1954]

Joan I suppose it’s trail and error as it’s so individual in what causes these symptoms . I just think it’s important to get nutrition in . I lost my appetite completely I was struggling even to drink fluids so I tend to eat little but often . I hope you find a diet that suits you …best wishes x