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

TraceyUSA · July 2017

Low Residue

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?

mp327 · July 2017

gabby_ca said:
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.

Hi Gabby!

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

Martha

jajmom · July 2017

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

Thanks!

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

Mollymaude · August 2017

Jajmom

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.

danker · August 2017

Diarrhea

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

jajmom · August 2017

Mollymaude said:
Jajmom
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.

Thanks Molly

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.

jajmom · August 2017

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

Danker

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 · August 2017

Lomotil

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?

LindaBaehr · August 2017

Wisteria83 said:
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.

No Beans!

The chilli was bean free.

Razzi · August 2017

Thank you everyone!

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

mp327 · August 2017

Razzi

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 · August 2017

mp327 said:
Razzi
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!

Hello mp327. Thank you so

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 · August 2017

Razzi

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 · August 2017

jajmom said:
Thanks!
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

aches and pains

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

Jane s · August 2017

inflammation?

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

jajmom · August 2017

Jane s said:
aches and pains
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

Hello, and welcome.

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 · August 2017

jajmom said:
Hello, and welcome.
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

jajmom

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

danker · September 2017

Diarrhea

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

LindaBaehr · September 2017

Razzi said:
Thank you everyone!
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

Fistula

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 · September 2017

Razzi said:
Thank you everyone!
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

Razzi

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

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

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