Chemo/Radiation Long Term Side Effects

dawn7767

I am now about 10 years post treatments.  After looking through several discussions it looks like most of us have alot of the same side effects.  

 

My first side effect started about 4 1/2 years after treatments ended and while I was on vacation.  I never had a issue until that day.  We ate lunch and was walking around seeing the sights and BAM uncontrollable diarrhea.  Now my stomach starts gurgling right before, but even then I have several accidents.  I tried taking Imodium with very little help. I am now taking Viberzi which does help except it is about $1000 per month for the precription.  I still have a few accidents and I can't pinpoint what is triggering it.  Any other suggestions?

 

I also have a mucus discharge.  Sometimes bothersome.  Any suggestions on what to help with this?

 

I know also have stiff thighs and a lower back where it is hard to bend down to pick up anything.  I am trying to stretch more and exercise more.  I just stared using a CBD safve that is helping a little. I am wondering if anyone else has had this happen also?

Any suggestions would be greatly appreicated.

 

Thank you

Dawn

 

 

mp327

dawn7767

I can relate to all of your long-term side effects.  I have had numerous episodes of real urgency and a few accidents, luckily, it has always happened at home--so far.  I think diet is the main culprit.  I see that someone posted a list of foods on another thread--those that are recommended and those that are not for this problem. 

Mucous--yup, occasional episodes of that too, with no idea what triggers it.  I'm not sure it's anything to be concerned about.  I am almost 11 years out of treatment and have just learned to expect it now and then.

Stiffness in joints--hips, back.  Stretching is about the only thing that I've found to help.

Mollymaude

Dawn

 

Me too on the attacks of diarrhea. usually triggered by eating but it seems like it can be any food. And the next time I eat that food I will be fine and have no problems. The unpredictability is the worst. But just try to carry on and not let it stop you. I am on vacation in France right now and have been taking a half an Imodium every time I get the bad diarrhea which is maybe every other day. I just try to be aware of the bathroom locations and pray. So far only a partial accident and luckily it was not too bad. I’m just not going to let myself be limited by fear anymore. Last time I had an accident I was at a Walgreens and just bought a pair of leggings there. Improvise and move on. Even laugh at the predicaments you find yourself in. I find it strangely less embarrassing if people know I have the problem from the get go so if it happens at work or I’m stuck on the toilet they know what’s going on. Or where I am if I disappear for awhile! I know you said Imodium doesn’t help you but it works for me and might for others too. And yes also to the mucus and stiff thighs. Stretching and exercise help but it is still there. 

 

annie4145

Yes, we have to just learn to

Yes, we have to just learn to live with our new normal and not get too upset about it  I am still trying to work that out.  2 episodes of slight accidents in the last two days, but it is rare, and just having bad luck this week.  Fortunately, I was able to get home with no problems.  Still don't know the triggers and I am 8 months post treatment.  It just seems to happen if I don't get to the bathroom soon enough when the urge becomes strong.  (It is not like the old days where I could just "hold it")

Mollymaude

Me too

yes at the first inkling I better be looking for a bathroom- there’s no “holding it”

Ottawamarc1234

Mollymaude said:

Me too

yes at the first inkling I better be looking for a bathroom- there’s no “holding it”

11 Months 1 Day Bowel Infection...

Taking two antibiotics combined given to me from Radiologist. Thinks the biopsy I had two months ago introduced an infection into me. Gradually getting worse not better.

 

Very dizzy as I type. Taking Percasets for pain and Epsom Salt baths

Not knocking the pain down like it usually does after BMs. Soak for half an hour grab the soap dish and cry!. Poos are mostly small in nature but desire too poo constant.

 

Beautiful Ottawa stretch of weather. Brain wants to go for a lesurely walk body says otherwise. Stuck at home with NO life.

 

If antibiotics don't improve my situation. 'Big Surgery' in the works Radiologist said...... Permanent Colostomy!!!

eihtak

Urgency, mucus, stiffness...and all that stuff

Hi all,

I think most of us have similar short or long term side effects of this treatment yet I do try to remind myself that at least for me, they are mostly manageable and I am oh so grateful to be here even if it means this is the price I pay.

I am in an odd way lucky (so take note if at some point an ostomy is in your future)...anyhow lucky because I do have a permanent ostomy as a result of this disease and while in the beginning there was a definite adjustment period (that was over 8 years ago now) I am free to spend my day out and about and not worrying about getting to the closest bathroom in time because I in a sense wear mine, lol. I do however like to find a restroom in which to empty it as soon as possible, but still, again...for me, it has given me so much freedom that it seems others have lost. 

We are all different and have unique factors that effect our outcome to the same treatment, but it sure is nice to have this place to share as we move forward.

katheryn

Ohmy

I had a colostomy last

I had a colostomy last December due to a reoccurrence of anal cancer.  The surgery did take months to heal and it was an adjustment.  But now I have a sense of Freedom from painful BMs.  Most of the time I forget I have the bag and just go about my business.  I know people may find it hard to believe but there are worse things than a colostomy.

Jet1204

https://csn.cancer.org/discussion/comment/1655000#Comment_1655000

Hi. How are you feeling today? I hope you are still doing well considering. Can you tell me more about your first and second diagnosis? I am so nervous. I have stage 1 anal cancer found in January. Did the chemo and 28 days of radiation? Treatment was hard, but I am happy I made it through treatment. I have scans on the 20th and pray it all goes away. I hope it doesn’t come back. Was yours hpv related? In a few weeks I am starting physical therapy for my pelvic floor and hips. I hear pelvic floor therapy can help with urgent need to go to the bathroom. I feel like mine is tolerable, but could be made better. My dr only agreed to therapy because I brought it up. Drs need to let patients know that pelvic floor can help us.

maria90

https://csn.cancer.org/discussion/319784/chemo-radiation-long-term-side-effects

You should connect with people who have gone through similar treatment because they can provide you more guidance and support.

StarrT

https://csn.cancer.org/discussion/319784/chemo-radiation-long-term-side-effects

Thanks Dawn! I'm new here… but not new to those side effects. The unexpected BM's have been rather consistently irregular, with no defineable triggers. Stress is seeming to be a contributor. I was left w/o much sphincter, so "holding it" is not happening. Imodium helps some, but in small doses. The situation sometimes gets me down, other times I'm more gracecious with myself.

Pelvic floor PT helped some & I still do some of it with my Yoga several times per week. Also QiGong, a slow moving TaiChi form. Both help with my muscle stiffness & hip/ thigh ache.

Mucus is often prolific, other times less. I appreciate that it is odorless! I use panty liners, but thin overnight ones are better on heavy days. Then Aquaphor, a diaper rash cream, or coconut oil helps skin heal overnight without being covered.

I also have a prolapse of the anal canal, that is starting to protrude more frequently when vertical… adjusting to something btwn my legs/ cheeks has been strange. I've wondered how that was for boys as they hit puberty, but my husband "can't remember." I've not asked any adolescent boys this question : o lol!!!

I try to have humor with it all, and I do daily have Gratitude for the blessing of another day… sometimes that's easier than others.

I APPRECIATE Your sharing & all the others as well… Hopoefully we continue to Grow Stronger together!!!

Thank You…😉

hamservice

https://csn.cancer.org/discussion/comment/1654790#Comment_1654790

mxperry220

I am 15 years post anal cancer treatment. I have had BM issues post treatment. I do not have diarrhea but have multiple bowel movements per day (5-6 BMs). When cramping starts, I need to be near a bathroom immediately. It is very frustrating. I do not feel comfortable being in public. In 2019 I saw my colorectal surgeon with BM issues. They diagnosed me with radiation proctitis. This is a result of the 30 radiation treatments I had. There is no cure. It is inflammation of the rectum/anus.