Advice/Wisdom

judyv3
judyv3 Member Posts: 143 Member
in Anal Cancer #1

Once again, I come to my friends here for advice and support.  I am having some difficulty.  I feel like I have gone backwards in my recovery very suddenly.  I am almost 10 months post treatment. And one year since diagnosis.  I tend to be constipated and this has not changed.  I take Miralax every night and I was taking a stool softener with it, but have stopped that.  

My issue is that I was going a couple of times in the morning, fairly easy to handle.  I just get up really early to make sure I can get to work.  Well, I started going more frequently so I though I should stop the Miralax.  I did and it really didn't stop how much I was going, but I began to have terrible pain with BMs.  I hadn't before.  So back to the Miralax.  Pain has gone away, but I'm still going several times a day and the clean up takes soo long.  

I just feel like I'm not getting it all out and then when I wipe it gets it going and then cleaning up is forever and then things are sore.  This morning I was late getting to work because I had a 20 minute clean up, then when I got here I had to disappear into the bathroom for 20 minutes.  This was not happening before!!! UGH.  I'm so sorry for the subject matter, but I know you all understand.

So to summarize, I've cut back on the Miralax (was taking 1 tbs, now 1/2 tbs).  I have been trying to add soluble fiber into my diet.  

I do have all those one year doctor visits coming up and will share all of this with them, but there is no one to give dietary advice.  I've gotten all that from here.  They don't have a nutritionist/dietician that I can see.   

Thanks for the millionth time for any help.

Judy

Comments

  • qv62
    qv62 Member Posts: 434 Member
    #2
    judyv3

    sounds like another story I could have written, I also get up an hour earlier than I would have to, to get ready for work, one hour in and out of the bathroom 3-4 times and the next hour to shower dress etc... and yes I hate that morning when things go differntly. I had a bad day this week and ran to the bathroom 4 times at work which is difficult (I don't leave home without wipes and extra underwear) Post treatment I was constipated as well and wound up hospitalized from being impacted (worse pain ever) Now I am back to my 3-4 times in the morning, I use Konsyl a psyllium fiber instead of miralax and take 2 Senna at night right before bed, depending on the day before I usually take a stool softener as well. Lots of juggling depending on the day before and of course what I ate but this routine seems to work best for me.

  • sephie
    sephie Member Posts: 650 Member
    #3
    so sorry

    ok, first do not wipe that much..  you will tear your anal tissue... use a squirt bottle and then use shammy cloth ( really soft and absorbent)  and place between cheeks to absorb water......keep doing this over and over as you go.... then after you think it is your last bm, use hair dryer on cold.....///// buy at least 2 or 3 of the cloths.... these are the ones they use to dry cars off with..... walmart .  target or auto place has them..... then wash dirty ones together...... i still do this every morning....not as many times as before ...i am 5 years post.....you will have to get up even earlier to handle this......i used to get up 3 hours before i had to be some where........it is truly horrible to go thru this.....no one would believe this regimen.....i have also found Balneol which i place on toilet paper to wipe after bm..... it is at walgreens and other drug stores....... i take 5 stool softeners... 2 in am, 2 lunch, 1 nite...... plus Konsyl psyllium husk in water in am.... then i drink lots of water right after i do that..... which makes me go to bathroom lots.....this is really hard to keep up with and go to work.....sephie

  • mp327
    mp327 Member Posts: 4,440 Member
    #4
    Judy

    Trying to figure out all of this bowel stuff can get really frustrating, to be sure.  I hear you about cleanup!  I get really tired of spending so much time in the bathroom to clean my bottom sometimes!  Mornings are not good for me and if I have to be somewhere in the morning, I have to get up very early to allow plenty of bathroom time.  All this, even after 6 years post-treatment! 

    However, don't let my case discourage you.  I attribute a lot of my problems to diet choices.  I've been really lax lately in watching what I eat.  I think I am just suffering from battle fatigue and having to deny myself certain things for so long.  So, I often find myself saying it's worth the risk.  I have enjoyed salads all summer long, but pay for it! 

    I do find that Imodium taken on a regular basis can help my issues of frequency.  I am now taking 1/2 Imodium every day.  It really is a trial and error thing and sometimes my bowels decide to be constipated. 

    I would recommend that you check out the website for MD Anderson's advice to patients for bowel management.  I pasted in the address below. 

    https://www4.mdanderson.org/pe/index.cfm?pageName=opendoc&docid=28

    Martha

  • sandysp
    sandysp Member Posts: 868 Member
    #5
    mp327 said:

    Judy

    Trying to figure out all of this bowel stuff can get really frustrating, to be sure.  I hear you about cleanup!  I get really tired of spending so much time in the bathroom to clean my bottom sometimes!  Mornings are not good for me and if I have to be somewhere in the morning, I have to get up very early to allow plenty of bathroom time.  All this, even after 6 years post-treatment! 

    However, don't let my case discourage you.  I attribute a lot of my problems to diet choices.  I've been really lax lately in watching what I eat.  I think I am just suffering from battle fatigue and having to deny myself certain things for so long.  So, I often find myself saying it's worth the risk.  I have enjoyed salads all summer long, but pay for it! 

    I do find that Imodium taken on a regular basis can help my issues of frequency.  I am now taking 1/2 Imodium every day.  It really is a trial and error thing and sometimes my bowels decide to be constipated. 

    I would recommend that you check out the website for MD Anderson's advice to patients for bowel management.  I pasted in the address below. 

    https://www4.mdanderson.org/pe/index.cfm?pageName=opendoc&docid=28

    Martha

    So resourceful!

    Martha,

    You are amazing with all your links! Thank you so much. We all need this help.

    Judy,

    So sorry to hear you are having these problems.

    I would like to add that our skin changes so much after we have had radiation treatments. I was taught and I know this sounds yucky to put vitamin E oil (I get it in the bottle by Amazon subscription delivered monthly) all over the vaginal and perianal area followed by Aquaphor morning and night and if I am having these kinds of issues, carry it with me and put it on over and over during the day. It helps so much! The skin starts tearing from all the bowel movements. The pain shoots down my legs when that happens. I feel a tremendous difference in Yoga when I am lax in my routine. I have much more muscle tightness and soreness in my ham strings and quads. It is related to how sore my anus is! Unbelievable but my intern could visualize why when I told her. I am a big believer in Whole Husk Psyllium Fiber after Dr. Weiser's office recommended it and I decided to take their advice. I buy an organic variety. If I use it four times a week, I am perfect. Anyway, the vitamin E and Aquaphor regimen will help keep the movements from being as painful and make the clean up a lot less painful and faster as the oil and moisture from the Aquaphor help the clean up. That and the Psyllium Husks - some time there is almost no clean up! I buy Kirkland brand wipes and find them to be very soothing.

    I went to a good GI doctor who wanted to refer me to a dietician. The GI doctor did a fellowship at MSKCC in nutrition for GI patients so she is a really good find for me, but I postponed my last appointment. You are reminding me to reschedule. She believes that gluten is a factor. Watch your gluten for a while and see if it helps you. Just a thought. I know when I eat too much bread and pasta I have a lot of very painful gas. I can no longer have more than a tablespoon of beans and avoid broccoli and cabbage family vegetables completely. My carrots need to be grated thin or cooked. 

    I drink Green Vibrance to make sure I have enough of the green stuff in my body. We don't assimilate well so this freeze dried powder is a good way to make sure I am taking green stuff my body may be able to get some good out of. It has 25 billion probiotics which helps maintain a healthy immune system and digestive track.

    Hope this helps!

    Good luck,

    Sandy

     

  • mp327
    mp327 Member Posts: 4,440 Member
    #6
    sandysp said:

    So resourceful!

    Martha,

    You are amazing with all your links! Thank you so much. We all need this help.

    Judy,

    So sorry to hear you are having these problems.

    I would like to add that our skin changes so much after we have had radiation treatments. I was taught and I know this sounds yucky to put vitamin E oil (I get it in the bottle by Amazon subscription delivered monthly) all over the vaginal and perianal area followed by Aquaphor morning and night and if I am having these kinds of issues, carry it with me and put it on over and over during the day. It helps so much! The skin starts tearing from all the bowel movements. The pain shoots down my legs when that happens. I feel a tremendous difference in Yoga when I am lax in my routine. I have much more muscle tightness and soreness in my ham strings and quads. It is related to how sore my anus is! Unbelievable but my intern could visualize why when I told her. I am a big believer in Whole Husk Psyllium Fiber after Dr. Weiser's office recommended it and I decided to take their advice. I buy an organic variety. If I use it four times a week, I am perfect. Anyway, the vitamin E and Aquaphor regimen will help keep the movements from being as painful and make the clean up a lot less painful and faster as the oil and moisture from the Aquaphor help the clean up. That and the Psyllium Husks - some time there is almost no clean up! I buy Kirkland brand wipes and find them to be very soothing.

    I went to a good GI doctor who wanted to refer me to a dietician. The GI doctor did a fellowship at MSKCC in nutrition for GI patients so she is a really good find for me, but I postponed my last appointment. You are reminding me to reschedule. She believes that gluten is a factor. Watch your gluten for a while and see if it helps you. Just a thought. I know when I eat too much bread and pasta I have a lot of very painful gas. I can no longer have more than a tablespoon of beans and avoid broccoli and cabbage family vegetables completely. My carrots need to be grated thin or cooked. 

    I drink Green Vibrance to make sure I have enough of the green stuff in my body. We don't assimilate well so this freeze dried powder is a good way to make sure I am taking green stuff my body may be able to get some good out of. It has 25 billion probiotics which helps maintain a healthy immune system and digestive track.

    Hope this helps!

    Good luck,

    Sandy

     

    Sandy

    LOL!  You are welcome!  I am "linked up"--6 years of talking about butts, constipation, diarrhea, and gas will do it!  Tongue Out

  • judyv3
    judyv3 Member Posts: 143 Member
    #7
    Thank you all!

    I guess I just needed reassurance that this was "normal".  I can feel my stress level building because it has been one year since diagnosis and all the tests are coming up.  And there's been a good deal of stress generally in my life.  Nothing terrible, just life.  My lovely younger daughter is heading up to NYC in a couple of weeks to do some auditioning and getting her ready to go is nerve-wracking.  She loves hot yoga, Sandy - I'd send her to join you, but she won't be able to afford it.  If she makes it big, she'll be in touch for sure.  I'll be traveling up in November for a family wedding (in northern New Jersey) and I'm already beginning to stress about travel and my bathroom needs, lol.  

    Martha, I will definitely be studying that site.  I know that I have to be better about my diet.  

    Truth be told, I've been frustrated that recovery doesn't mean I get to feel like I did before cancer (I had no symptoms).  I knew this would be the case, but until it happens you just don't know what an adjustment it is.  Working can be tough, I prefer my own bathroom - since I spend so much time there.  I can see my son's eyes roll when we're getting ready to go out and I say I have to go to the bathroom (I understand, my eyes roll too).  We also have my 97 year old monster-in-law living with us and she has a colostomy which is the worst possible thing ever in her mind.  She is perfectly healthy, her mind is sharp (and her tongue), but she cries about this colostomy every day - she's had it for at least 10 years and has been living with us for 14.  I feel like if I complain, I will sound like her.

    Enough!  Thanks for your responses.  We all have our stories.  I will do what I can to improve this situation and be happy about it!

    Judy

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