Ongoing bowel problems

[Mariecapp]

After 6.5 yrs post anal cancer treatment I am experiencing symptoms that are worsening. I cannot eat a complete meal and I have constant gas, bloating and bowel movements after I eat. I have to take immodium on a daily basis. I have also lost 9 lbs because I just can't tolerate food. I cannot use lactose of any kind, wheat, green veggies and chocolate. Can anyone offer me some answers? I appreciate it

[Dasch123]

Hi Mariecapp. I can't offer any help but I I couldn't read and not comment. I am 8 months post radiotherapy/chemotherapy/brachytherapy for stage 3 cervical cancer and have the same problem that you are having, I completely understand how debilitating this is and my goodness you have been suffering for a long time😔my oncologist has referred me to a gastroenterologist and on 3rd April I am having a colonoscopy to see what damage has been done to my bowel by radiation to give me these symptoms. I will keep you posted on any answers or recommendations I get, as it may help you too x

[Mariecapp in reply to Dasch123]

Thank you. We all seem to have the same issues. Please keep me posted.

[Dasch123 in reply to Mariecapp]

Hi Mariecapp...thought I would give you an update. I had a colonoscopy with biopsies and that has confirmed that part of my bowel is permanently damaged from radiotherapy and brachytherapy. I now take Imodium every day like you and have been told to keep a food diary to work out what foods cause me the most issues. I am being tested for bile acid malabsorption next week and also EPI if I have either of those I have been told they are also permanent although treatable with enzymes. I get pain every time I eat and can only manage very small portion sizes and can not be far from a toilet. How are you doing ?

[Mariecapp in reply to Dasch123]

Thanks for the update. Seems like the medical profession doesn't tell us anything that we didn't already know. I'm still doing immodium on a daily basis along with peppermint capsules. Sometimes my flare ups are worse than others with no apparent reason that I can think of because I eat only what I know I can tolerate. I see my primary this week so I'll see what she suggests.

[Deborah411]

Hi Marie, I also was diagnosed with anal cancer 4 years ago and my digestive system has never been the same. I find what works best for me is eating very small quantities but often. I did become lactose intolerant but I can get away with eating a bit of cheese. I could not drink coffee anymore but found that if I froth up some oat milk and add a splash of coffee I am ok. This is my go to comfort drink now. I had a bout of diverticulitis recently and I was told I had a hiatal hernia which makes sense because of all the acid reflux I deal with. Chocolate, tomatoes, anything acidic I must be careful not to consume too much. I also was diagnosed with radiation colitis and proctitis. I deal more with constipation rather than diarrhea. Not eating has its own problems and I remember diarrhea was one of them. If you are losing weight as you said I would bring that up to the doctor. Be sure you are drinking plenty of water.

Have you had a colonoscopy and gastroscopy? Or any fecal tests to be sure you are not dealing with anything else? If you can get a good dietician to really look at what you can and cannot eat and plan from there. There may be some important nutrients your missing. I find by eating often much smaller amounts of the many foods that bother me I am able to handle it and at least I feel stronger and I am not losing weight anymore. I find my digestive system constantly has its ups and downs especially when I eat more of something I shouldn’t have. Oh and I definitely try to stay away from prepared or processed foods, they have tons of ingredients that can play with your stomach.

It takes a lot of testing, trial and errors, ups and downs to figure it out but keep at it and hopefully you will find a way to deal with it. ❤️❤️❤️

[Mariecapp in reply to Deborah411]

Thank you for the important information. Yes, I find that if I eat small meals I do much better. I haven't had a colonoscopy or any other tests but I will look in to that also.

[AT73]

Hi Marie, I really sympathise with your eating difficulties as I had real problems with my diet and also lost a lot of weight.

The specialist dietician I have now has been very helpful. I don’t know if you have been told about ‘resistant starches.’ This was something I was completely unaware of. These include reheated or cold potato, rice and pasta. These should be eaten freshly cooked if you suffer with digestive problems.

My diet is still very restricted, but much better than it was and I avoid any of the above which has helped me.

A really good dietician who understands intestinal failure problems is so important. So many medical professionals just don’t seem to be able to give good advice for PRD sufferers.

I do hope things improve for you.

[Mariecapp in reply to AT73]

Thanks for the information. I wasn't aware of that. The only rice I eat is in the form of rice cakes. I will ask my oncologist/hematologist if they know of anyone that is familiar with this

[Romian]

Hi Mariecap,I have the same problems, except not loosing weight. I had anal cancer about 3 yrs ago. The radiation did a lot of damage, I got an ulcer and proctitis. I am afraid to get a colonoscopy because it might do further damage. I moved to France from the USA and I haven't seen a gastroenterologist yet. I'm researching the resistant starch and I will do it. Also eat green bananas. I eat no fiber, try to stay away from acidic foods that irritate my anus. I got rid of the diarrhea through nutrition, but still have the frequency and urgency after meals. Food is better here. I'm also lactose intolerant, which is not good in the Paris area. Difficult to find lactose free dairy. I had a lot of bleeding and got 69 treatments in a hyperbaric chamber, breathing pure oxygen. That helped. Good luck.

[Mariecapp in reply to Romian]

Thank you for sharing your difficulties in dealing with PRD and how our treatment has affected us. I'm still learning what I can and can't tolerate. A suggestion was made to eat small meals and that has helped me. If a holiday comes around, I take immodium and peppermint capsules a few hrs before I eat. That helps. I always know when I'm going to have a problem because I get painful cramps. Best to you

[Renee1964]

Hello Marie , 9 years after cervical cancer 3 , and after 4 colonscopies and lots of tests, have been put on a very restricted diet because of severe weight loss. 3 Novasource instead of food plus B1 peptides and Elemental . All shakes of proteins and sugar. Rice,potatoes in all forms except fried , pasta , no veggies , no lentils beans etc. No salads nor spices or sauces. Everything with starch , small quantities frequently. My endocrino has me as severe malnutrition. Dx was rectitits , actinitis , thickening of colon , very small passage. I have got to the point I live on imodium and shakes. Though from time to time I will indulge myself with a burger or chocolate cakes. I hope it gets sought out. Best wishes XX

[Mariecapp in reply to Renee1964]

Thank you for sharing. Your diet is very restricted but at least you know what you can and can't eat. I'm finding that sometimes even what I know I can eat bothers me. Best to you

[Renee1964 in reply to Mariecapp]

It sometimes happens even the foods you are supposed to take will not stay inside !! But you get used to it and stay in or you take a lor of loeramide and hope it works !!Best wishes XX

[Yellow-Butterfly]

I can relate. I had pelvic chemo radiation almost 6 years ago for anal cancer. I have the same ongoing, worsening issues. I hope somebody has some advice! The only thing that has somewhat helped me is anti-diarrhea meds, anti-gas meds, pepsid, etc. daily....but this doesn't help much. I hate to leave the house.

[Mariecapp in reply to Yellow-Butterfly]

Sorry to hear that you also experience the same problems. Yes, sometimes I have to gauge my day by how my bowel issues are. Best to you. PRD is a terrible thing

[Happyretired]

I had chemo radiation 19 years ago and over the years have tried omitting several foods from my diet but have come to realise it’s very hit and miss as what affects me one day doesn’t another which is frustrating. I tend to avoid all the “ good foods” like fruit and veg as this is a def no no for me hence my diet is very carbohydrate heavy but it seems to work for me. Like lots of others I depend on Loperamide but I find liquid suits me best as I can take smaller doses therefore avoiding constipation issues. Yes my bowel issues dictate my daily activities and the clothes I wear…. Thank goodness for black trousers! I think it helps to know that we are not alone and this forum proves good support and useful tips. Good luck

[Mariecapp in reply to Happyretired]

Thank you for your response. Wow, 19 yrs ago! I think that we all treat this by learning what we can and can't tolerate in our diets.

[Vailgirl]

Hi Marie. This is so frustrating isnt it? I am 16 years out and have the same issues. What i have found is that if i eat more than 2 grams of fiber i have gas and bloating , at 3 grams i have loose stools that just slip out all day, at 4-5 grams i have blockages w severe bloating and pain That often ends up w a hospital visit the next day to get fluids ( after6 hrs of pain i can make myself vomit but then it doesn't stop) and then i have about 4 days of not being able to eat at all. Unfortunately i have found that i just cant eat as healthy as id like. Low fiber veggies and not much of them is all my sustem can take. Lots of protein and gluten free bread, white rice. Thats about it. I also juice daily ( or try) to get nutrients. Good luck. After 8 years of trial and error i have figured this out

[Mariecapp in reply to Vailgirl]

Thank you. Sorry that you are still experiencing ongoing problems. Your information that you shared will help me to figure this out. I'm a runner and having stool slip out is both frustrating and painful while I'm running and it irritates me to the point where I bleed. Best to you

[Vailgirl in reply to Mariecapp]

i use cotton rounds, fold them in half, and they catch slippage if its small. Our bowels are like a slide now so sometimes that means a landslide of sludge when out running or walking

[Mariecapp in reply to Vailgirl]

Yes, I have to wear a mini pad every day and all the time! I don't dare go without one and I carry an extra one with me.

[Julia-25 in reply to Mariecapp]

just a lighthearted note to your post,I have related issues and also Lymphoedema in one leg.Having heard rebounding helps the Lymphoedema I duly bought a small trampoline,on trying it out however I realised it certainly didn’t help with the bowel probs ie slippage,nothing actually *slipped* but boy did it feel likely…

[Romian in reply to Vailgirl]

Hi, I am on a similar diet. I checked all the veggies fiber content. I love cabbage, but it's a no no. Only Chinese cabbage has 1 gr of fiber for 100 gr. Cucumber, watercress, iceberg lettuce. I have a list. I try not to eat any food that has no more than 1 gr. of fiber. I have no more diarhea. But the feces are hard to come out because the muscle at the exit doesn't work good, radiation damage.

[Vailgirl in reply to Romian]

Hi Romian, It's so hard that we can't eat healthy great tasting veggies! I found I can do up to 2 grams... Im able to eat a small amount of mushrooms, zucchini, onions, tomatoes, peppers, eggplant (all the nightshades which isn't the best), some carrots, celery, cucumbers, arugula and some spinach. White rice is a staple which also isn't great and although I can't really do gluten, I am able to have sourdough bread (which again..lol)and some cheese (although I have to be mostly dairy free). it's a very limited diet. Going out to eat is hard but there is always salmon or chicken, hold the veggies, and white rice please. Gets kind of boring. I was mostly vegetarian prior and loved it (I did have chicken and fish on occasion). Do you juice? I find I can have about 5 ounces of a good homemade veggie juice. Any tips you have, I'd love to hear. I keep thinking we should write a cookbook..how to eat (somewhat) healthy when you can't eat fiber!

[Mariecapp in reply to Vailgirl]

I can't tolerate any green veggies. Carrots and Beets are ok though. I can't tolerate any juices, but I can only tolerate fruits without seeds. So since I take Immodium on a daily basis I noticed that I am bleeding from my rectum more. Does anyone else have this problem?

[Romian in reply to Mariecapp]

I was bleeding a lot, due to radiation. I had an open wound. Had to be hospitalized. And then I got 60 treatments in a hyperbaric chamber with oxygen. That helped a lot.

[Romian in reply to Vailgirl]

I have the list of the veggies with 1 gr of fiber. White onions and the white part of leeks. I have Lynch syndrome. And there are several major studies how to prevent colorectal cancers. And I would advise everyone to research " resistant starches". They could be a big help to all of us.

[Mariecapp in reply to Romian]

Thank you for your information. I had 40 hyperbaric therapy treatments and that helped to stop my bleeding. That was 5 yrs ago. Now I'm bleeding again but not as bad as before. I read about resistant starches and it was very informative

[Vailgirl]

yep. The cotton helps w the irritation so the feces doesnt touch the irritated skin. Sometimes when thongs are already irrotated i put coconut oil on the pad.

[Mariecapp in reply to Vailgirl]

Thanks, that sounds like a good idea. I'm going to try that

[JDKPA]

I am supposed to eat lots of fiber (raspberries are the highest fiber fruit, and I try to snack on nuts a lot) due to chronically low magnesium levels, sometimes "critical" as my doctor calls the lowest level. So this does not help with the other suggestion to eat low fiber! It is a tough balancing act and sometimes what I thought was ok is not. I had fresh chunky gazpacho yesterday and paid for it last night. Yet I have often eaten gazpacho this summer. I think the smoother it is, the better.