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

LindaBaehr

Hello All-

I should have joined earlier, but better late than never.  

I was diagnosed initially last February, 2016.  My anal cancer had metastisized to my liver (only one spot, luckily), so my treatment course may have run a little differently than some of you.  I Had 4 rounds of chemo and six weeks of radiation.  At about week two of radiation, the diarrhea started.  I started retaking Oxy at about week 4 for the pain, and even on that I still had terrible diarrhea.  Three weeks after the radiation, I had the right lobe of my liver and gall bladder removed.  In late October I had my first post-treatment PET scan and it was clear.  I have since had another PET scan and a biopsy, and still clean.  The issue is the diarrhea.  I still have daily diarrhea, and sometimes pretty severe stomach pains.  Between my chemo doc (used to be an internist0, and a new GI doc I have been seeing, they think it is damage from the radiation.  I just had a GI appointment two days ago, and she said that some of the symptoms might go away in time, but some of the damage might be permanent.   Not really what I wanted to hear.  Is anyone else dealing with this post-treatment?  Any tips/suggestions?  I really do not want to live like this forever.  It is beginning to be difficult to function normally.  

Thanks.

mp327

LindaBaehr

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

LindaBaehr

mp327 said:

LindaBaehr

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

Thanks Martha.  I have been

Thanks Martha.  I have been eliminating food and drink over the past few months to see if there is anything specific causing issues, and I have come up empty.  I don't really eat a lot of raw veg any more.  I used to eat salads every day.  :-(  I will keep asking.  My new doc gave me some pro biotics and also some concentrated mint pills, but nothing seems to be helping.  She said there might be healing over time, but there might be symptms from damage that persist.  Blah.  

pializ

I finished my treatment in

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

Mollymaude

Linda

Have you tried cutting out lactose? I changed to lactaide milk and after a few weeks it seemed to help. At least it helped cut down on bloody diarrhea and mucus. The consensus on this site seems to be that a lot of people have pretty drastic changes to their GI tract after treatment. I still have problems with diarrhea. I take Immodium when it gets bad. I still get angry when I think about the GI Doctor I went to who told me all my diarrhea issues couldn't be from radiation because it is focused on the anal canal where the tumor is and can't cause damage higher up. He needed to get in this site and read up about what anal cancer patients have to say! At least your doctors are right in my opinion in saying that the radiation causes permanent damage.

That aside, you can take Immodium even on a daily basis if need be. I hate to hear that the diarrhea is "cramping" your style (pun intended). Which brings me to my next point- the cramping. I usually only have it right before I have to poop and the whole time I'm on the toilet. I think it's ironic I spend all this time on the toilet just to have diarrhea but for me I get waves of cramps and there's no point getting off the toilet until the cramps are done. I had my gallbladder out about ten months after treatment and unlike others haven't had any problems- or any different problems. I just felt better since I got  the gallbladder out - I think it was chronically inflamed and making me really tired.

Salsify

Constant bowel issues!

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

LindaBaehr

Mollymaude said:

Linda

Have you tried cutting out lactose? I changed to lactaide milk and after a few weeks it seemed to help. At least it helped cut down on bloody diarrhea and mucus. The consensus on this site seems to be that a lot of people have pretty drastic changes to their GI tract after treatment. I still have problems with diarrhea. I take Immodium when it gets bad. I still get angry when I think about the GI Doctor I went to who told me all my diarrhea issues couldn't be from radiation because it is focused on the anal canal where the tumor is and can't cause damage higher up. He needed to get in this site and read up about what anal cancer patients have to say! At least your doctors are right in my opinion in saying that the radiation causes permanent damage.

That aside, you can take Immodium even on a daily basis if need be. I hate to hear that the diarrhea is "cramping" your style (pun intended). Which brings me to my next point- the cramping. I usually only have it right before I have to poop and the whole time I'm on the toilet. I think it's ironic I spend all this time on the toilet just to have diarrhea but for me I get waves of cramps and there's no point getting off the toilet until the cramps are done. I had my gallbladder out about ten months after treatment and unlike others haven't had any problems- or any different problems. I just felt better since I got  the gallbladder out - I think it was chronically inflamed and making me really tired.

Hi Mollymaude

I have been lactose intolerant all my life so I really don't do much dairy- just cheese from time to time, and eliminating that didn't seem to make a difference.  

And yes, I am very familiar with the long bathroom breaks.  I do that as well.  If I get off the toilet too soon, pretty much as soon as I stand up, I have to sit down again.  :-(

LindaBaehr

Salsify said:

Constant bowel issues!

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

Hi Sally

Thanks for this.  

I do miss my salads.  :-(  Without thinking I ate a plum the other day and paid for it.  No bueno.  

Mollymaude

Linda

It's always good to compare notes with other people. It does make it easier to know others have the same problems. If I think back, I think I can tolerate more fruits and veggies than I used to. Maybe in time you'll be able to also. For example I can now get all the veggies on my Subway sandwich and I couldn't before. I'm still pretty sensitive to fatty stuff but sometimes I don't know what sets me off.

mxperry220

Imodium

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

mp327 said:

LindaBaehr

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

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

mp327

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

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.

 

mp327

LindaBaehr said:

Thanks Martha.  I have been

Thanks Martha.  I have been eliminating food and drink over the past few months to see if there is anything specific causing issues, and I have come up empty.  I don't really eat a lot of raw veg any more.  I used to eat salads every day.  :-(  I will keep asking.  My new doc gave me some pro biotics and also some concentrated mint pills, but nothing seems to be helping.  She said there might be healing over time, but there might be symptms from damage that persist.  Blah.  

LindaBaehr

I do think for some people it takes longer to heal.  Try to be patient.  I know it's frustrating though!

Soknwt

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.

Froggy32

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 had diarrhea around the 3rd day of radiation, and off and on since. I started taking Imodium and a prescription pill called lotomtril. My dr told me to take it with the Imodium about every 2 hours while it was bad.

I finished my treatments last Friday. I had 5 weeks of radiation and f5u chemo in a picc line. I am still alternating between constipation and diarrhea, so I am still wearing the depends, since I don't know which way I will be going.

 Hopefully the diarrhea won't last too long for you. 

Mollymaude

Soknwt

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!

LindaBaehr

Ugh

So sorry.  

I can now eat small salads if there is mostly just lettuce.  I can't really do raw broccoli or cauliflower, things like that.  I can't do fresh fruit of any kind yet.  I tried eating a plum off of a tree we have at work just about a month ago, and I paid for it for several hours.  I wasn't really thinking when I put it in my mouth.  Don't worry about weight control at this point.  Just eat what you can tolerate.  And eat protein.  I relied a lot on canned chili and canned shredded chicken a lot, in addition to soup.  Just the thought of canned chili right now makes me queasy, but at the time it was my biggest source of protein.  

Wisteria83

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.

Diarrhea

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.

Wisteria83

LindaBaehr said:

Ugh

So sorry.  

I can now eat small salads if there is mostly just lettuce.  I can't really do raw broccoli or cauliflower, things like that.  I can't do fresh fruit of any kind yet.  I tried eating a plum off of a tree we have at work just about a month ago, and I paid for it for several hours.  I wasn't really thinking when I put it in my mouth.  Don't worry about weight control at this point.  Just eat what you can tolerate.  And eat protein.  I relied a lot on canned chili and canned shredded chicken a lot, in addition to soup.  Just the thought of canned chili right now makes me queasy, but at the time it was my biggest source of protein.  

Chilli

Linda,

I cannot imagine what the beans in the chili will do to me, so I've avoided all beans since they cause gas...which gives abdominal pain and farts that cannot be trusted.  After treatment, getting back to "normal" is a long drawn out affair.  I realize that this could actually be a permanent side effect, and I'm hoping for all our sakes that this is just a temporary side-effect.  If you can tolerate it, get as much protein as you possibly can.  I survived on Boost for weeks because of this.  I got plenty sick and tired of it too.  I have been mixing Boost with icecream or yogurt and a whey protein powder...put it all in the blender...with a couple tablespoons of peanut butter and some ice cubes and maybe a banana.  So far, bananas are the only raw fruit that I can tolerate.  I miss the summer bounty of fresh fruits and veggies and am sincerely hoping that this is all temporary and eventually I'll be able to eat normally again.  This is almost like introducing new foods to a baby.  You need to try one at a time and see how they affect you.  It's a long, drawn out process to figure out what you can tolerate, and things can change overnight. When you are having so much diarrhea, it's so important to stay hydrated.  I had to have IV fluids three times while in treatment and after.  It's a tough road, before, during and after treatment.  I'm 3 months post treatment and I'm still struggling with bowel control.  Worst of all is the not knowing yet if the treatment has worked.  I'm seeing my radiologist/oncologist next month for my firs DRE, and I'll be having a first anoscopy in September.  I'm keeping fingers, toes and eyes crossed that they got rid of the tumor completely.  The waiting is the hardest to deal with...at least it is for me.  Best of luck you you.

mp327

Diet

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. 

gabby_ca

11 years out for me. Last

11 years out for me. Last year, I started eating a strict keto, low carb diet and all symptoms disappeared in a week.