Post-treatment pain with BMs

AmyD1310

 

 

 

Hello all!

I hope everyone is having a nice weekend so far! I am only two weeks out of treatment, and am having pretty bad pain with my BMs. My doctor said this was pretty normal, but I thought I'd bring the question here because you've all actually been through or are going through this. My body tends to constipate instead of have loose stools/diarrhea, so i have to admit that the size of BMs could be causing irritation? I am a hypochondriac, so I suppose I am just wondering if this is all normal. I had a check-up with rad onc on Thursday, and he said everything looks fine "down there", but it doesn't feel fine. Thanks for any/all information you have to share!

-Amy

mxperry220

Pain Meds

If you are on pain meds tthey can constipate you.  You might try a stool softener  .For me diarrhea was the issue and I took immodium.  I am a little over 8 years post treatment of anal cancer.

Mike 

Pat42

Echo Mike's comment!

Hi Amy!  I hope your pain level gets lower soon! 

My wife finished her treatments last Monday (you're about a week ahead of us in recovery).  The week before she was in pretty horrible BM nightmare pain.  Twenty something kids came in from out of town and they were scared when she was very loud in the bathroom for long periods of time.  I don't know if it is the case with you, but she's convinced that what Mike suggested really helped her.  She told the chemo onc the Thursday before the last treatment her pain was a 10. No new suggestions, other than maybe take a stool softener.  She wasn't wild about that because didn't want the diarrhea problem and the outside skin pain associated with that. 

   She was not taking anywhere near the dosage of percocet she had been prescribed (only one or two total in 24 hours versus 3 every six hours on the bottle).  Against my "no-nothing" advice, she still thought that might be the problem, so she went off the percocet completely.  She said the pain wasn't any worse (she started taking ibuprofen instead).  Within 24 hours, she told me the pain was down to a "6".  I have to say for me it seemed like she was getting a lot more relief than that, as I could no longer hear agonized cries from the bathroom during each visit. Over this past week it seems to have gotten better, and although it is still clearly uncomfortable, she doesn't need a two hour nap every time she emerges from the bathroom now.  Hard to believe that something they prescribed for pain could be causing it, but it seemed to be that way for her.

   Problems for her now are a low RBC count (not real low, but low enough to be causing fatigue), painful urination (although nothing like the "broken glass" UTI she had in week 5), and little to no warning when a BM or gas is imminent (since she doesn't know which it's going to be, she has to make a run for the rest room just in case).  Been told all of this is pretty normal, and hopefully will just take time and patience to achieve something closer to normal.

   I was glad to read you were able to start back at work, it was hard for me to imagine that another week would make such a big improvement.  Hopefully that's going well!

 

Pat

mp327

Amy

I had painful BM's for awhile after treatment was over.  The area was burned/traumatized and will take a little time to heal.  And as others have said, pain meds can cause constipation.  Using a stool softener may help.  I had the opposite--terrible diarrhea.  Hang in there, things will get better as your body heals!

Martha

rlr000dc

UPDATE FROM SUGERY

Sorry it took so long to get back on site. I Got good news my cancer is all clear I go to dr Tues. not sure i can get chemo port out or more testing. I missed a week of work due to my skin being torn I guess from being pulled open.

I am 8 months out of treatment. I take a stool softner every day and the days I dont go I take miralax and that seems to be working. Good luck to all! You will get through this.

mp327

rlr000dc

I'm glad you got good news and I hope you can keep moving forward in your recovery.  It may take some time, but you'll get there!

Martha

AmyD1310

Pat42 said:

Echo Mike's comment!

Hi Amy!  I hope your pain level gets lower soon! 

My wife finished her treatments last Monday (you're about a week ahead of us in recovery).  The week before she was in pretty horrible BM nightmare pain.  Twenty something kids came in from out of town and they were scared when she was very loud in the bathroom for long periods of time.  I don't know if it is the case with you, but she's convinced that what Mike suggested really helped her.  She told the chemo onc the Thursday before the last treatment her pain was a 10. No new suggestions, other than maybe take a stool softener.  She wasn't wild about that because didn't want the diarrhea problem and the outside skin pain associated with that. 

   She was not taking anywhere near the dosage of percocet she had been prescribed (only one or two total in 24 hours versus 3 every six hours on the bottle).  Against my "no-nothing" advice, she still thought that might be the problem, so she went off the percocet completely.  She said the pain wasn't any worse (she started taking ibuprofen instead).  Within 24 hours, she told me the pain was down to a "6".  I have to say for me it seemed like she was getting a lot more relief than that, as I could no longer hear agonized cries from the bathroom during each visit. Over this past week it seems to have gotten better, and although it is still clearly uncomfortable, she doesn't need a two hour nap every time she emerges from the bathroom now.  Hard to believe that something they prescribed for pain could be causing it, but it seemed to be that way for her.

   Problems for her now are a low RBC count (not real low, but low enough to be causing fatigue), painful urination (although nothing like the "broken glass" UTI she had in week 5), and little to no warning when a BM or gas is imminent (since she doesn't know which it's going to be, she has to make a run for the rest room just in case).  Been told all of this is pretty normal, and hopefully will just take time and patience to achieve something closer to normal.

   I was glad to read you were able to start back at work, it was hard for me to imagine that another week would make such a big improvement.  Hopefully that's going well!

 

Pat

Missy

Hi Pat,

I was just thinking of you and your wife this morning and I figured I would check in. I know Missy was just a week behind me in treatment...how is she feeling? I bet she is grateful to have had your support while going through this. My husband, family, friends and the people on this discussion board were a godsend for me. I hope you are both doing well.

Sincerely,

Amy

Pat42

AmyD1310 said:

Missy

Hi Pat,

I was just thinking of you and your wife this morning and I figured I would check in. I know Missy was just a week behind me in treatment...how is she feeling? I bet she is grateful to have had your support while going through this. My husband, family, friends and the people on this discussion board were a godsend for me. I hope you are both doing well.

Sincerely,

Amy

Improving!

Amy,

   Thanks!  I feel like a sidekick, while you all are trying to win the super bowl, or something.  Looking back on the last two months, it's still hard to imagine trying to do this from Missy's viewpoint.  I can't count the number of hours I've spent reading forums and medical journals with a few trips to the university medical library thrown in. I wanted to know everything I could about the disease and the treatment, while she just really wanted to not think about it too much.   I guess now that I've actually written that down, I understand it maybe more than I have.  I guess it makes sense in a way that you would just want to leave it to the experts.  As much as I think I've learned, I don't think it would have changed a whole lot about how we went through this.  I think she probably felt it would help her to not drift towards thinking about the worst case scenarios.  I guess everyone's different, that's what makes things interesting.
    I think she's doing a lot better in all of the areas that were giving her trouble last week.  She says her pain level is still a 5 when going to the bathroom, but she's spending a lot less time in there each time, and she's a lot less worn out doing it.  She's still napping daily, but then so am I when I get home at night!  I've been coming home every day for lunch so she gets some human interaction, and our oldest daughter comes over most evenings and is becoming a very good cook as a result of this whole episode, so a good side benefit there!
    Food is tasting better for her, she's craving a lot of things that she hasn't eaten since starting treatment.  Still in small portions, think her stomach shrunk.  She ended up losing about five pounds, which is about all she could afford to lose, she's back to her high school weight for the first time in thirty years, and pretty happy about that.  I think I'm going to have to lose a few!
    Food was kind of a funny thing during treatment.  I kept trying to steer her towards a lot of the suggestions to make the pain less, but for her it was always about how bad the food tasted or how it was too hard to eat certain things because of how dry her mouth was.  So this is no recommendation for anyone, but these top the list of what she ate the most:

1.  Grapes!  This was the absolute best tasting thing to her, and she probably ate more than she had over the last two or three years during the treatments.
2.  Arby's cheese sticks and french dip sandwiches.  We laughed about this a lot.  Apparently they slid down well.  Maybe Arby's needs to consider a cancer patient menu, "Tastes good but not necessarily the best thing for your system at this point."
3.  Pat's homemade spaghetti.  She didn't seem to want much of anything spicy, so this may have been a backhanded compliment.
4.  Cranberry juice.
5.  Diet Ginger ale.
6.  Chocolate Ensure Enlive.  Lots of calories and protein in this.  It was funny that all our older relatives like the vanilla instead.
7.  Chicken noodle soup.

We have another blood test tomorrow, hopefully just a quick visit to make sure the blood counts are all still increasing.
Oh, and one more thing, she's very happy about!  No hair loss!  One of her biggest fears was this, so that at least she was spared.  Good strong hair genes, I guess!

I'm sure the overthinking the "did the treatment work" question is going to be a big weight over the next couple years, so far she doesn't want to talk about that at all, can't say that I blame her.  That was a big weight on me during my little bump twenty years ago, and I didn't really want to talk it over with anybody, even her.  I know people are trained to listen, but I just couldn't sit and talk to a stranger about those fears.  And here I am on an open internet forum! Maybe the anonymity is for me!  Once again, people are different, thank God for the variety!  Just feel like I need to keep an eye on her, I've seen her tear up two or three times during the last three months, and never before in the last thirty years of marriage, so I know she's doing some heavy thinking/worrying that she's not letting out.

She went out for her first drive alone today since about week three of treatment.  Still wearing jammy pants.  Got cash at the bank drive thru and you guessed it, mid-afternoon snack at Arby's.  That was a big adventure!

Hope you're still getting better and quickly!  Sending the most positive thoughts your way!
Pat

rlr000dc

mp327 said:

rlr000dc

I'm glad you got good news and I hope you can keep moving forward in your recovery.  It may take some time, but you'll get there!

Martha

martha

see the vaginal stenosis thread could use some input, thanks!

mp327

Pat42 said:

Improving!

Amy,

   Thanks!  I feel like a sidekick, while you all are trying to win the super bowl, or something.  Looking back on the last two months, it's still hard to imagine trying to do this from Missy's viewpoint.  I can't count the number of hours I've spent reading forums and medical journals with a few trips to the university medical library thrown in. I wanted to know everything I could about the disease and the treatment, while she just really wanted to not think about it too much.   I guess now that I've actually written that down, I understand it maybe more than I have.  I guess it makes sense in a way that you would just want to leave it to the experts.  As much as I think I've learned, I don't think it would have changed a whole lot about how we went through this.  I think she probably felt it would help her to not drift towards thinking about the worst case scenarios.  I guess everyone's different, that's what makes things interesting.
    I think she's doing a lot better in all of the areas that were giving her trouble last week.  She says her pain level is still a 5 when going to the bathroom, but she's spending a lot less time in there each time, and she's a lot less worn out doing it.  She's still napping daily, but then so am I when I get home at night!  I've been coming home every day for lunch so she gets some human interaction, and our oldest daughter comes over most evenings and is becoming a very good cook as a result of this whole episode, so a good side benefit there!
    Food is tasting better for her, she's craving a lot of things that she hasn't eaten since starting treatment.  Still in small portions, think her stomach shrunk.  She ended up losing about five pounds, which is about all she could afford to lose, she's back to her high school weight for the first time in thirty years, and pretty happy about that.  I think I'm going to have to lose a few!
    Food was kind of a funny thing during treatment.  I kept trying to steer her towards a lot of the suggestions to make the pain less, but for her it was always about how bad the food tasted or how it was too hard to eat certain things because of how dry her mouth was.  So this is no recommendation for anyone, but these top the list of what she ate the most:

1.  Grapes!  This was the absolute best tasting thing to her, and she probably ate more than she had over the last two or three years during the treatments.
2.  Arby's cheese sticks and french dip sandwiches.  We laughed about this a lot.  Apparently they slid down well.  Maybe Arby's needs to consider a cancer patient menu, "Tastes good but not necessarily the best thing for your system at this point."
3.  Pat's homemade spaghetti.  She didn't seem to want much of anything spicy, so this may have been a backhanded compliment.
4.  Cranberry juice.
5.  Diet Ginger ale.
6.  Chocolate Ensure Enlive.  Lots of calories and protein in this.  It was funny that all our older relatives like the vanilla instead.
7.  Chicken noodle soup.

We have another blood test tomorrow, hopefully just a quick visit to make sure the blood counts are all still increasing.
Oh, and one more thing, she's very happy about!  No hair loss!  One of her biggest fears was this, so that at least she was spared.  Good strong hair genes, I guess!

I'm sure the overthinking the "did the treatment work" question is going to be a big weight over the next couple years, so far she doesn't want to talk about that at all, can't say that I blame her.  That was a big weight on me during my little bump twenty years ago, and I didn't really want to talk it over with anybody, even her.  I know people are trained to listen, but I just couldn't sit and talk to a stranger about those fears.  And here I am on an open internet forum! Maybe the anonymity is for me!  Once again, people are different, thank God for the variety!  Just feel like I need to keep an eye on her, I've seen her tear up two or three times during the last three months, and never before in the last thirty years of marriage, so I know she's doing some heavy thinking/worrying that she's not letting out.

She went out for her first drive alone today since about week three of treatment.  Still wearing jammy pants.  Got cash at the bank drive thru and you guessed it, mid-afternoon snack at Arby's.  That was a big adventure!

Hope you're still getting better and quickly!  Sending the most positive thoughts your way!
Pat

Pat

I was very glad to see your update on Missy.  It sounds like she is doing quite well in recovery mode.  Getting out of the house and running an errand on her own is a big deal--I remember the first time I did that after treatment.  It made me feel so good, knowing that I could once again do something I did before and not really dread it or over think it.  Good for her!  I hope her blood work will show that things are bouncing back.  As for the pain that continues when going to the bathroom, that will improve with time.  May her appetite continue to increase--mine seemed to come back just out of the blue one day and I could not get enough to eat!

I must tell you how wonderful you are for being her advocate and caregiver.  You have obviously gone the distance in caring for her, learning about her disease and treatment, and gathering information from others for her benefit.  I wish you both all the very best as you get your life back to normal, which you will!  May God bless!

Martha

Mollymaude

Pat and Missy

Im so glad she is feeling better! Thanks for the update. Her food choices were kind of cute! I'm thinking that if you guys have been married for thirty years a lot of things go without saying between spouses. I know what mine is thinking about 90% of the time before he says anything! And it sounds like your family has grown closer with your daughter coming over nightly too.

Im on the last day of a fun vacation to New Orleans and we've been walking up to seven miles a day sightseeing. Every day of the vacation I marvel and am grateful that my energy and stamina are back! I'm a little over one year out from treatment.

Pat42

mp327 said:

Pat

I was very glad to see your update on Missy.  It sounds like she is doing quite well in recovery mode.  Getting out of the house and running an errand on her own is a big deal--I remember the first time I did that after treatment.  It made me feel so good, knowing that I could once again do something I did before and not really dread it or over think it.  Good for her!  I hope her blood work will show that things are bouncing back.  As for the pain that continues when going to the bathroom, that will improve with time.  May her appetite continue to increase--mine seemed to come back just out of the blue one day and I could not get enough to eat!

I must tell you how wonderful you are for being her advocate and caregiver.  You have obviously gone the distance in caring for her, learning about her disease and treatment, and gathering information from others for her benefit.  I wish you both all the very best as you get your life back to normal, which you will!  May God bless!

Martha

thanks

Martha,

   You are an endlessly positive person, obviously you know this from all the other thank you's you've gotten over the years for your advice and encouragement.  In this case you really helped a NON-cancer patient through this treatment period.  You deserve the best of everything!

  Got the results from another weekly blood test, and all the counts are good.  She escaped from the house on her own again today, went shopping at the grocery store in her sweat pants, then out for a half hour drive to visit her folks.

Pat

Pat42

Mollymaude said:

Pat and Missy

Im so glad she is feeling better! Thanks for the update. Her food choices were kind of cute! I'm thinking that if you guys have been married for thirty years a lot of things go without saying between spouses. I know what mine is thinking about 90% of the time before he says anything! And it sounds like your family has grown closer with your daughter coming over nightly too.

Im on the last day of a fun vacation to New Orleans and we've been walking up to seven miles a day sightseeing. Every day of the vacation I marvel and am grateful that my energy and stamina are back! I'm a little over one year out from treatment.

N'Orleans!

Molly,

I've only been there once, but Missy went to Tulane for college.  Too wild for me, I'm afraid, for full time living, but definitely a fun vacation.  Sounds like you're getting some great exercise in with your vacation, and congratulations on making it past one year.  I know from my minor brush with the big C that those milestones mean a lot mentally.

Thanks for all your positive posts, I think I've read just about everything on the whole site!

Pat

rlr000dc

Glad that Missy is able to go

Glad that Missy is able to go out and about thats great news!

Also happy to see where Molly is on vacation and doing so well!

mp327

Pat42 said:

thanks

Martha,

   You are an endlessly positive person, obviously you know this from all the other thank you's you've gotten over the years for your advice and encouragement.  In this case you really helped a NON-cancer patient through this treatment period.  You deserve the best of everything!

  Got the results from another weekly blood test, and all the counts are good.  She escaped from the house on her own again today, went shopping at the grocery store in her sweat pants, then out for a half hour drive to visit her folks.

Pat

Pat42

I'm not sure I deserve all of that praise, but I thank you for your kind words.  I sometimes wonder if I shouldn't just move on from the support sites--I'm on 3--but I always think about how alone I felt in 2008 when I was going through treatment and had no one to talk to who was experiencing the same thing.  After I started treatment, however, my radiation oncologist got another AC patient and, with our mutual permission, introduced us to each other.  It was so nice to finally be able to talk to someone who understood what this journey was like.  Again, I thank you for being so kind.  I am truly impressed by your thirst for knowledge so that you can help a loved one.  That speaks volumes about the kind of person you are.

I'm so glad to hear that Missy's blood work came back good and that she is finally venturing out solo!  That was a huge step for me towards getting back to normal.  May she continue to move forward in her recovery!  May God bless you both!

Martha

Mollymaude

Pat

I know it has been said before but you are so impressive to do all this reading and research on Missy's behalf. She is lucky to have you!

Pat42

Mollymaude said:

Pat

I know it has been said before but you are so impressive to do all this reading and research on Missy's behalf. She is lucky to have you!

She would say the reverse, and be right!

It's actually just that I'm probably the world's biggest worry wart! For some reason it makes me feel a little better thinking I understand it a little.

Like a lot of you, I don't want to be told we have to do something without understanding why it makes sense.  Having experienced the treatment "second hand", I know how hard it is on the patient.  But it is also very effective, compared to a lot of cancers.

Hopefully twenty years from now, most cancers will be cured with a single pill!  Wouldn't that be great?