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

LindaBaehr
Posts: 35
Joined: Jun 2017

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.  Undecided 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's picture
mp327
Posts: 4147
Joined: Jan 2010

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
Posts: 35
Joined: Jun 2017

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.  

mp327's picture
mp327
Posts: 4147
Joined: Jan 2010

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

Tyndraj
Posts: 2
Joined: Jul 2017

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's picture
mp327
Posts: 4147
Joined: Jan 2010

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.

 

dharma19
Posts: 16
Joined: May 2010

Pain, told it may be permanent, diarrhea, now incontinent. 

pializ
Posts: 454
Joined: Nov 2012

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
Posts: 298
Joined: Nov 2016

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.

LindaBaehr
Posts: 35
Joined: Jun 2017

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.  :-(

Salsify's picture
Salsify
Posts: 30
Joined: Nov 2015

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
Posts: 35
Joined: Jun 2017

Thanks for this.  

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

jajmom's picture
jajmom
Posts: 22
Joined: Mar 2010

Hi Sally,

I just wanted you to know that you wrote my story down to the tiniest detail! I am 2 months post treatment and am trying to come to terms with this constant bowel issue awarness. I have had too many OOPS! situations myself. I thankfully work about 100 feet from my residence but I still wait for an average of 4-5 bowel movements every morning before I go out to the shop! What's with that? I also am well aware of the restroom locations in every store, restaurant or any place I frequent. There's just no telling my bowel "no" anymore... when it says "yes" get out of my way ;) Anyway, from what you are saying I might as well adjust because this will be my new normal! I may however try the probiotics, any improvemnent over this would be welcome.

Can I ask you if you experienced almost debilitating soreness and stiffness post treatment? I am 53 years old but when I get up from the sofa or out of the car I resemble a 99 year old! Once I get everything moving and loosend up, I am usually good until I sit down again. Other than my bowel issues, this lower back pain and overall body stiffness is my next biggest complaint...along with edema in my legs/feet.

Thanks for sharing, your post made me giggle!

Chris

Jane s
Posts: 37
Joined: Aug 2017

Hi there, I just joined this forum and was reading through some posts and yours struck me.  I was diagnosed in Nov 16, went through the chemo/radiation in Dec and Jan, so it's been 7 months since treatment ended.  I just recently started having the joint aches and stiffness, just like you describe.  I'm glad to see that it's normal, every little thing worries me!

Jane

jajmom's picture
jajmom
Posts: 22
Joined: Mar 2010

Hi Jane,

I am glad you have found this site, it has truly been a source of comfort and information...information from those who are dealing with the same issues as you and me.

I know what you mean when you say every little thing causes some concern. I've had my first post treatment anoscopy and the surgeon said things looked good, you'd think that that would alleviate my fears but somehow I believe time will be the only cure for that! Each good check-up will bring more confidence I'm sure. I had some lymph node involvement both mesorectal and extra-mesorectal. This is probably what keeps me on edge the most as I will not have a follow up CT scan until 1 year post treatment. I did not have a PET scan which many of our members have had, my doctors didn't think it was necessary.

Do you find most of you post-chemo/radiation side effects diminishing over time? I have regained a lot of my energy, but as for my BM frequency and bottom fragility, it's seems that healing has slowed down in that department. Also, the achiness seems to be here for the long haul, thankfully a night's rest seems to alleviate most of the lower back pain and hip stiffness.

I wish you well in your recovery!

Chris

 

Jane s
Posts: 37
Joined: Aug 2017

Hi Chris

I felt so much better yesterday, the fear, anger and depression was gone and it's because I found this site and now I'M NOT ALONE.  It's amazing.  Yes, very comforting.

I had a ct scan and HRA in May and will have them every 3 months, I think for the next few years.  I'm noticing that I get much more nervous a few weeks before the tests.  I'm sure that will continue.   I know exactly what you mean that time and more good check ups are the only things that will take away the fear.  I won't relax until 2019 or so!

I would take the fact that you don't need a ct for a year as a good sign.  

I feel like I'm healing very slowly.  The pain and bleeding will seem to get better over a few weeks, then get worse again.  Recently it even started to hurt to pee again, it's like I unhealed.  My doctor said in another 6 months I should feel much better, I had a big tumor, he said, ugh.  He also said this could be the new normal.  My energy also comes and goes.  I actually cleaned my house 2 weeks ago, haven't done that in forever, haven't done it since...   I try to move when my body wants to and rest when it wants.  I stay in bed in the morning because my other choice is spending the morning onthe toilet but I try to do yoga or at least some stretching and a walk or swim every day, I seem to have aches everywhere but moving definitely helps.  

Take care!

Jane

mxperry220
Posts: 475
Joined: Mar 2011

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

Mollymaude
Posts: 298
Joined: Nov 2016

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.

Soknwt
Posts: 3
Joined: Jul 2017

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's picture
Froggy32
Posts: 79
Joined: Jun 2017

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. 

Wisteria83's picture
Wisteria83
Posts: 129
Joined: Feb 2017

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.

Mollymaude
Posts: 298
Joined: Nov 2016

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
Posts: 35
Joined: Jun 2017

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's picture
Wisteria83
Posts: 129
Joined: Feb 2017

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.

LindaBaehr
Posts: 35
Joined: Jun 2017

The chilli was bean free.  Smile

mp327's picture
mp327
Posts: 4147
Joined: Jan 2010

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
Posts: 38
Joined: Jul 2006

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

mp327's picture
mp327
Posts: 4147
Joined: Jan 2010

I'm glad to see you still check in here from time to time and that you are doing well!

Martha

TraceyUSA
Posts: 316
Joined: May 2013

I followed a low residue diet during treatment as recommended by my radiologist.  I wonder if that has helped long-term because I do not seem to have the issues that many of you do with fruits & vegetables.  I eat everything that I did prior to treatment (including many raw & cooked vegi's) and while I do have multiple daily BM's and some urgenty issues, I do not have the problems discussed here.  Yes, I had diahrrea during & for a while post treatment but I have not taken Immodium for the past 4 years since I finished treatment.  I do take a daily probiotic.

Have you considered consulting a dietian?

Mollymaude
Posts: 298
Joined: Nov 2016

I'm a year and a half out and it does get better! I had the same stiffness you are talking about. The radiation causes all the tendons, ligaments, etc to shorten and get a bit scarred. So every muscle group thats connected with your pelvis is shorter and less flexible. Don't worry if the providers act like they don't know what you're talking about- it is real! I could barely cross my ankle over my knee to tie my shoe. I went to PT and I learned several stretches that were really helpful even though the PT therapist had never heard anyone with my complaint, she could still give me helpful stretches. I think walking helps too. But it does take time and I'm not back to where I was pre-radiation. The bowel issues continue to be a problem but you do get used to coping with them. I'm going to go on a trip to Italy with a lot of walking and have decided I'm going to take Immodium every day, carry toilet paper with me(and a change of clothes!), explain to the group I'm with a little bit about the problem and hope for the best. And yes, I've already had accidents in public. You just have to keep going and don't let it keep you from doing things. 

jajmom's picture
jajmom
Posts: 22
Joined: Mar 2010

I appreciate you taking the time to address my concerns. I really miss the person I used to be, although I am certainly glad to be here. It's difficult for people to understand, I look the same on the outside and folks don't realize there's still so much going on on the inside. Even my hubby and kids don't quite get it, I feel like my life was turned up-side down and I guess I just expected it to right itself when treaments were over. I AM glad the seemingly endless trips to radiation, bloodwork and dr. visits are over, that is definitely something to smile about! I am trying to take it day by day, looking for little improvements to celebrate. I am grateful for everyone here, letting me and others know that there folks who can understand (unfortunately :/ ) what we are all going through.

danker's picture
danker
Posts: 1109
Joined: Apr 2012

Get a prescription for LOMOTIL.  Two or three will stop the diarrhea cold!!!  Good luck!

jajmom's picture
jajmom
Posts: 22
Joined: Mar 2010

Hi Danker,

Can you tell me if this med causes your stool to be firm? I don't like the diarrhea but just the thought of passing hard BMs is a frightening prospect! Seems funny, discussing poo with someone is probably something I wouldn't have done a year ago ;)

Thanks,

Chris

Wisteria83's picture
Wisteria83
Posts: 129
Joined: Feb 2017

Chris,

The Lomotil didn't cause my stool to be firm, just helped to control diarrhea.  I had a period of time after treatment when my stool was firm, but I don't know why.  I can't blame it on anything in particular, but you do want to avoid having hard bm's.  It seriously hurts like the dickens.  Screaming into a towel kind of pain.  And because of the pain, you may try to avoid going and that only makes it worse.  Best advice I can give is to avoid anything that might constipate you.  Peanut butter for instance.

As you heal, it gets easier and less painful.  For me, the pain was entirely internal during those hard bm's.  The external pain came from burns and from diarrhea on tender skin.  Keep using whatever you are using for an ointment externally, and ask for some with lidocaine.  I wasn't offered any and didn't think to ask for it, but I bet it would have helped a lot.

I don't think discussing poo was in any of our conversations prior to diagnosis, suddenly it's all we think or talk about and it's entirely acceptable here.  Seriously, who else can you discuss it with except for people who know exactly what you're talking about?Laughing

 

Razzi
Posts: 2
Joined: Aug 2017

Hi there, I'm in the UK & have just joined this forum. Reading through all the comments has helped me immensely, as I've been suffering from so many of the symptoms you all mention. I had radiotherapy & chemotherapy together last year, finished the treatment in September 2016, and my scans since then have been clear, for which I'm very, very grateful. However, side effects are lingering, I have to rush to the toilet several times every morning and now my legs are aching and stiff, and I'm so tired. Everyone tells me I look so well, but I don't feel that well and feel like a fraud, everyone expecting me to be back to normal. I don't make plans or go out much as I can't really cope with anything much. This forum has reassured me that what I'm feeling is normal, so thanks! PS I also have a seton in my bottom due to a fistula, which is apparently quite rare! So a double whammy! A pain in the arse literally. X

LindaBaehr
Posts: 35
Joined: Jun 2017

I also had a fistula, and I had a seton during radiation, which they removed after.  Unfotunately the radiation damaged the tissue and the fistula remains- I'm now 14 months post treatment.

Jane s
Posts: 37
Joined: Aug 2017

You described exactly how I feel and what I'm going through, except for the fistula, I was spared that particular horror.  I think people expect me to feel better, too, and I expect myself to feel better.  It's been 8 months, why am I still tired and achy?  I guess that's just the way it is, it's a nasty treatment with long lasting after-effects.  Thank god I found this site, knowing waht I'm going through is normal is so helpful.

 

Jane

mp327's picture
mp327
Posts: 4147
Joined: Jan 2010

I'm sorry you have also had to go through this treatment, but am so glad you have found this website.  It's a wonderful place to be for information and support, as you've already learned.  My treatment ended in September 2008 and I will tell you that the first couple of years were a time of coping with lingering side effects and trying to heal.  I'm happy to say that at the 2-year mark, I felt so much better and my bowels had settled down quite a bit.  I had learned what foods were triggers for diarrhea and urgency and I avoided them, which helped tremendously.  I would suggest that you begin keeping a food journal.  Write down everything you eat in a day and note how your bowels reacted.  When you look back, you may see a pattern of certain foods that your bowels do not handle well and you should avoid.  You may find that as time goes on, things continue to improve, so please do not be discouraged.  As for the aching legs, that's another common side effect from the radiation.  I am a believer in exercise, so I think walking may help.  Perhaps you can begin with a walk around the block.  If you have access to a treadmill or perhaps a stationary bicycle, that would be even better.  I presume that you are still going for regular follow-ups with your doctor(s), so make sure you bring these issues up at the time of your next appointment. 

Believe me when I say that things will get better.  It does take time to recover, so be patient.  Try to be as active as possible, eat well, and get enough sleep.  All of that will help with the healing process.  I wish you all the very best!

Razzi
Posts: 2
Joined: Aug 2017

Hello mp327. Thank you so much for replying, and your helpful advice. I'll start to keep a food journal, and see if I can spot any links. Actually what you mentioned about walking is good advice, I have a dog so I do manage to take her out daily, and I think this has really helped me, mentally as well as physically, I meet so many lovely people while out dog walking. What you said about the 2 year mark is also very encouraging and I do hope and believe that time will improve my symptoms, I only have another year to go.  Also I'm retired so at least I don't have to worry about struggling into work, I feel so sorry for people who still have to work whilst feeling unwell. Best wishes to you! x

 

Mollymaude
Posts: 298
Joined: Nov 2016

Welcome to the site, sorry you have to be here. The foods that trigger me are fatty foods or lactose. If I get carried away and eat too much fruit or salad that can be a problem too. Glad to hear you are walking and have the companionship of the dog. Can you get a consult with a physical therapist to show you some stretches? Or google them. All the pelvic muscles, ligaments and tendons get stiffer and scar down shorter. I think my most troublesome one was identified by my PT as piroformis muscle. It is short to begin with and always made my butt feel stiff and sore. You can google stretches for that specifically. I'm out a year and a half from treatment and continue to improve in most areas. Take care.

Jane s
Posts: 37
Joined: Aug 2017

I started having terrible stomach pains about 3-4 months post treatment. My radiation doctor gave me Trental, in case I have upper GI inflammation from the radiation.  Now I take 2 Trental and 2 Lialda (for lower GI inflammation that I had before).  Maybe ask your doctor about that.  

Jane

 

danker's picture
danker
Posts: 1109
Joined: Apr 2012

I have  been NED for 6 years!!!  Still get diarrhea, presumably from the radiation.  Get a RX for LOMOTIL.  It will stop  the diarrhea.  Good Luck

Andreakh
Posts: 1
Joined: Sep 2017

Hello everyone,  I have been reading this board for many years, was diagnosed with anal cancer Jan. 2009. I had chemo and radiation, no surgery. They called it moderately differentiated squamous cell carcinoma. What made me join only now is that I see several people on this board with similar problems. I had diarrhea for a long time, started drinking kefir, which is fermented milk, and this really seemed to help. Also I was diagnosed with necrotizing  fasciitis last year when doctors put me on a lot of different antibiotics. I spent a long time in hospital and rehab. During that time I developed c. diff which is caused by too many antibiotics and they gave me probiotics. Did anyone with bowel problems try probiotics? Sorry for the long post, Andrea 

 

 

Bellen
Posts: 249
Joined: Aug 2016

I wonder if probiotics would be helpful or recommended for stomach and bowel issues from chemo - or if it is okay to take while on chemo.  I know my dietician mentioned he would look into it too - okayed yogurt, but wasn't sure about kefir or probiotic supplements. Will ask my Oncologist.

Mollymaude
Posts: 298
Joined: Nov 2016

I tried probiotics and didn't really see much difference. I took a fancy one that was expensive that I read about in a study on pelvic radiation and diarrhea prevention- study showed it helped but honestly I personally didn't see much of any difference. That said I still think it's worth a try since everyone is different. Better check with oncologist though since they might not want you on them if your white counts are really low.

LindaBaehr
Posts: 35
Joined: Jun 2017

My GI Doc put me on them too, but I haven't seen any improvements either.  I keep trying, though.  

I've crapped myself during the night twice in the last week or so.  I'm getting so tired of this.  

Fengshoe
Posts: 1
Joined: Sep 2017

Hello everyone! I'm a newbie here.  However, I completed treatment in January, 2017 for stage 3b anal cancer.  Although, I expected to be completely healed and back to normal (whatever that is), I'm still not quite there.  Things are good for me, but I've been very proactive about treatment for side effects from the chemo and radiation.  I can't stress enough to take yoga classes and do stretching exercises for the pelvic damage to your muscles, tendons and ligaments.  I can tell a big difference from when I first started in April.  I think that exercise has also helped to keep fatigue at bay.

I do have bowel issues like all of you.  I eat lots of salads, fresh fruits, Greek yogurt, and grilled meats, and but I take lots of fiber supplements and probiotics.  I find that if I avoid caffeinated teas (black, green, etc.), processed foods, chocolate, sweets and fried foods, I can keep from getting diarrhea (coffee is no problem, thank goodness).  Also, the stools stay firmer and maybe only one movement a day with more fiber and probiotics.  The bigger the meal, the sooner I have to visit the ladies room. Just in case, I wear a pad or pantyliner every day, but I hope that those will be a thing of the past eventually.

I think the process of recovery is all about finding out what will work for you.  Keep moving and smiling!  There's a reason each and every one of you is still here!  Your journey isn't finished.....

Mollymaude
Posts: 298
Joined: Nov 2016

Sorry about the crapping yourself. I have had some close calls at night but luckily wake up in time. However I've crapped myself twice in public and had to drive home 30-45 minutes each time, I will spare the rest of the gory details. Except for the part I kinda have to laugh at- I was so frazzled by the time I got home from one of the incidents that I left the car running in the driveway until it ran out of gas! Laugh or cry I guess it is what it is.

LindaBaehr
Posts: 35
Joined: Jun 2017

Ran out of gas!  Laughing

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