The Endless Diarrhea and Bowel Issues.......

Welcome to this site.  I'm glad your last scan and biopsy showed that you are NED.  It is quite concerning that you are having such severe stomach pains and diarrhea at over a year out of treatment.  Radiation to the intestinal tract can cause lots of damage and perhaps your doctors are correct.  I have had bouts of abdominal pain many times.  However, mine have been due to intestinal blockages, one landing me in the hospital a few years ago, about 4 1/2 years after my treatment.  Have you asked your doctors about possible blockage causing your pain?  When I had a blockage, the pain was off the charts.  If not a blockage, it's also possible that you have adhesions from the radiation that are on the outside of your intestines, which can cause squeezing of the passage.  Another possibility is twisting of the intestines.  Keep asking questions of your doctors.

If you are eating a lot of raw fruits and vegetables, you might try cooking everything first.  I microwave apple and peach slices and eat only the occasional salad.  Everything else is cooked.  I think radiated intestines have a hard time with raw foods for some people who have undergone this treatment.  It would be worth a try.  Also, if you're not on a probiotic, that would be good to try.

I wish you all the best as you seek answers to these issues.  Hang in there because sometimes time is the best healer!

Martha

I finished my treatment in January 2013 and had my gallbladder out in January of this year. It took me a couple of years to eat relatively normally and to know my 'new' body. The gallbladder issues started just after I completed my treatment, but I didn't realise that then. I just thought it was linked with the chemoradiation. Anyway, to cut a long story short, I continued to eat 'normally' until having my gallbladder out and then have had to start to learn about my 'new new body'. What I have noticed is that I can avoid diarrhoea if I eat regularly throughout the day. the bile continues to drip drip from our liver but without the gallbladder it cannot be stored. If I don't eat regularly, I suffer the consequence And experience bile dumping. I know some people struggle with their diet after both chemoradiation and cholecystectomy. You have had a double whammy. You can have bile binders, digestive enzymes or loperamide to help. 

Best wishes

Hi Linda,

If misery loves company, I am so glad you posted about this. I was diagnosed in October 2015 and completed treatment in Dec the same year. I still have bowel issues. Before treatment on a day like today I would be sweating away in my backyard planting and weeding and trimming. What I am doing is waiting for the next bowel movement because I know as soon as I start doing anything I will have an urgent need and possible accident if I don't spend at least 2 or 3 hours letting everything out first...

My fingernails used to be fairly nice and healthy, and now they are not, but it is having to be so aware of my bowels that frustrates me. For a year and a half I have stubbornly refused to wear a pad or Depends because I tend to get yeast infections when wearing anything but cotton panties. I just ordered cotton washable pads because I recently have had more little accidents and hope maybe they will be more breathable. I used to eat salad every day too, but do not anymore. My colorectal doctor thinks more fresh fruit and veggies is the answer to everything. Not for people with irradiated butts it isn't! I started taking a probiotic EVERY DAY and that seems to have helped reduce frequency somehow. But I still won't pass gas unless seated on the toilet. I never noticed passing mucus until I had the cancer - bloody mucus is why I finally scheduled a colonoscopy. Doctor found the cancer during the pre-colonoscopy consult. (Side note: it had been 7 years since previous scoping, I had been holding the script for another so long that the guidelines had changed from every 5 years to every 10 years. I am glad I didn't know that or I might have put it off longer. As it was, the only involvement other than the squamous cell tumor where rectal and anal canals meet was possibly the local lymph nodes which got radiation anyway.) 

Anyway, anal snot has been with me ever since. When I really think about things i know I am really lucky. It was caught early. So far no other cancers. I still have all the parts I was born with except my tonsils and a right fallopian tube that is in shreds. And my bowel control is good enough that I avoided pads for many months and might not need them all the time still.

But as far as radiation damage to bowels - the doctors don't seem to want to acknowledge it still happens with modern radiation equipment, but it happens. 

Ok, I think I am ready to get back out to my yard and planters now. I just wanted to b--ch abit and tell you that you have lots of company in your recovery.

Sally

I have been cancer free since 2009 and take two imodium daily.  I have not had diarrhea but frquent BMs.  The radiation doctor told me imodium would not hurt taking them long term.  They seem to calm the my colon and help minimize my daily BMs.  My normal BMs before treatment were 1-2 times daily.  My BMs post treatment are 3-4 times daily.  For the first 3 years I never knew when the "urge" might strike and I limited my outings.  Hope this helps some.

Mike

Tyndraj said:

Anal cancer

Hi I am 18 months out of treatmen. I was stage 4 non-metastatic, 4 cm internal 1cm external. I had a chemo pump for two weeks 24/7 and 6 werks of radiation. I can never have radiation again as they hit the limit for my body, as I am a breast cancer survivor had radiation then also.  But I have the same issues. I almost hate eating. First the diarrhea then the scar tissue becomes inflamed and I am off to the races for a couple of days.  I have learned no diary, I really watch the fiber.  It has become exhausting trying to figure what to and what not to eat.  I however do not have any stomach pain.  Any suggestion?  I am also looking for a pelvic floor specialist as it effected the control of leakage. Please anyone

Thanks Tyndraj

Sorry to hear you are having so many issues.  I can only imagine your frustrations.  I wonder if a registered dietician or nutrionist could offer any help.  If you haven't tried probiotics, that would probably be a good thing to try.  It's good that you are not having stomach pain--that would make me worry about an intestinal blockage.  Go back to your doctors and ask for help in finding answers, including a referral to a pelvic floor specialist.

I will tell you that it took me about 2 years post-treatment to feel markedly better and for my bowel issues to settle down.  Perhaps with a little more time, you will experience improvement.  Do not give up.  I think healing from this treatment can be an ongoing process.  I wish you all the very best.

I am on my fifth day of radiation and reading all this makes me a bit anxious.  I started having terrible diarreha last night after treatment, which kept me up the better part of the night.  I'm guessing that the foods I ate on the weekend just caught up with me.  I am sad to hear that salads are going to be taboo after all this since that's pretty much how I can manage my weight.  I did take an Immodium this morning and am not as bad as I was last night, but I go through waves of feeling queezy.  I started three sessions of chemo last week and will have another three next month.  It sounds like the treatment is pretty much the same for everyone here.

My advice would be to focus on treatment right now, that's plenty on your plate. But also not to worry about your post cancer diet too much. I have been able to steadily increase fresh fruits and veggies in my diet. I finished treatment in January 2016. At first I added canned green beans- those were easiest to tolerate. I could also eat fresh cucumber and cucumber salad for some odd reason. Most cooked vegetables were ok in moderation. For me it was a gradual process adding foods back in. And if I make mistake, oh well, diarrhea isn't the end of the world. Today I've had two ears of corn and a Ceasar side salad and so far so good. If you haven't read it elsewhere, please watch out for lactose- even now during treatment. Radiation changes can make your GI tract lactose intolerant even if you never were before. I changed to Lactaide milk and most of the diarrhea with bloody mucus stopped- but it takes 2-3 weeks off lactose to really make a difference. I will be sending positive thoughts your way!

Soknwt said:

Just Started

I am on my fifth day of radiation and reading all this makes me a bit anxious.  I started having terrible diarreha last night after treatment, which kept me up the better part of the night.  I'm guessing that the foods I ate on the weekend just caught up with me.  I am sad to hear that salads are going to be taboo after all this since that's pretty much how I can manage my weight.  I did take an Immodium this morning and am not as bad as I was last night, but I go through waves of feeling queezy.  I started three sessions of chemo last week and will have another three next month.  It sounds like the treatment is pretty much the same for everyone here.

Soknwt, I've eaten salad.  About once a week I give it a shot and try to eat a small salad, just to check if I'm still sensitive to it.  I am.

 I am also struggling with diarrhea or just very loose BM's.  The urgency is really nerve wracking because I'm afraid to leave the house.

If you are having a lot of diarrhea, make sure your fluid intake is high, so you won't get dehydrated...and try to avoid caffeine.  For myself, that first morning coffee, while always welcome has become the way to have a BM nearly immediately.  Because I'm on opiods, that are generally constipating, I've had no constipation at all.  Dehydration is dangerous, and if you find yourself having symptoms of it, make sure you tell your dr.

I must say that even being almost 9 years out of treatment, I still struggle with the "what to eat question" on a regular basis.  I will say, however, that for many people, including myself, it can improve with time.  I have had off and on periods where I cannot tolerate things, then I will slowly try to add them back into my diet in small amounts and all is well--at least for awhile.  I have recently been able to enjoy small amounts of salad with just a few raw veggies add in.  This is not bound to last though, given my history.  It is a guessing game, to be sure.  I do eat beans in small quantities.  Yes, they give me gas!  They can also cause more frequent BM's.  However, as long as they don't cause me to have an obstruction or uncontrollable diarrhea, I am fine with that.  I have allowed myself small amounts of fresh peaches this year.  I have said in the past that I could not tolerate fruits and veggies that were raw, but in very small amounts, I seem to be okay for now.  I think my situation may be the same for many others when they get as far out from treatment as I am.  I think the body can adapt to a point, but I believe the scales can be tipped very easily and very suddenly, based on my own experience.