Bowel training slowing me down

stratplayer
stratplayer Member Posts: 42 Member
edited March 2014 in Colorectal Cancer #1
I have been reading everyones notes and replies and they are very good.
I was T3,N1,M0 in 2009.

I took ChemoRadiation, Radicle surgery and Ileostomy reversal last month.
The pain of the bowel movements are very intense. I cry alot.
I have followed the instructions from the poopy nurse at MDA.
Still I have 2 or 3 bad days in a row. I am due to return to work next month.
I have to get better so I can go back to work.
There are days that I wish I had the Ileostomy bag again.
I use Immodium, Lomotil, Citrucel, A&D cream and oniment, Hemroid cream and Sayman salve.
Sayman salve is an old product that a dear friend told me about. She has used it for 20 years on her butt and she gets good results.
My hemroids are what kills me. I get some healing time from the meds, but when it runs out, it really runs out.
I do Epson salt baths and that seem to help.
Does anyone have any suggestions?

Comments

  • PamPam2
    PamPam2 Member Posts: 370 Member
    #2
    pain
    I had that type of awful pain a couple years too. Now take a daily stool softener, and the script cream proctozone HC is what finally helped me, I now am having no problems at all, unless I am foolish and eat popcorn, nuts and the like. The procotzone cream has a steriod in it and in a few days brought me relief. I was afraid I was going to have to have surgery the pain was so bad, but it seems the problem is now resolved. Hope you get some relief soon.
    Pam
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #3
    Hello Stratplayer!
    Welcome to this forum. I don't have any advice for you regarding the pain, other than to ask if you have talked to your doctor about it, but I wanted to say "hi".

    Take good care!
  • stratplayer
    stratplayer Member Posts: 42 Member
    #4
    PamPam2 said:

    pain
    I had that type of awful pain a couple years too. Now take a daily stool softener, and the script cream proctozone HC is what finally helped me, I now am having no problems at all, unless I am foolish and eat popcorn, nuts and the like. The procotzone cream has a steriod in it and in a few days brought me relief. I was afraid I was going to have to have surgery the pain was so bad, but it seems the problem is now resolved. Hope you get some relief soon.
    Pam

    Thanks for the suggestion
    Thanks for the suggestion Pam. The Proctozone HC cream is by script only?
  • stratplayer
    stratplayer Member Posts: 42 Member
    #5
    AnneCan said:

    Hello Stratplayer!
    Welcome to this forum. I don't have any advice for you regarding the pain, other than to ask if you have talked to your doctor about it, but I wanted to say "hi".

    Take good care!

    Hi Anne. I have spoken with
    Hi Anne. I have spoken with my poopy nurse back at MD Anderson. Annette Bisanz, BSN, MPH, RN. I need to contact my Medical Oncologist with these questions.
    Thanks for your help.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #6
    Pain
    Sometimes I still get the immense pain from going so much. Using Calmoseptine ointment is a big help. Your drug store doesn't put this on the shelf, but it is OTC and if they don't have it in stock they can order it. Buy the 4 oz or bigger size as it is more cost effective. There were times when a reversal of the reversal is the only thing that I would want. There were nights that they pain was so bad, I just sat there and cried so know exactly where you are coming from. Try that ointment though. It is used a lot in nursing homes for people that have frequent bowel movements. Good luck and hope you feel better soon.

    Kim
  • geotina
    geotina Member Posts: 2,111 Member
    #7
    Strat -
    Sorry, I got nothing to offer, my hubby's cancer is Stage IV, in the transverse colon .

    Just wanted to jump in and say Welcome to the Board.

    Take care and hang in there - Tina
  • Bbandboys
    Bbandboys Member Posts: 1
    #8
    Wow...sorry to hear this. My
    Wow...sorry to hear this. My husband (47yo) had major resection with illeostomy in May. He is finishing 6 weeks of radiation/chemo pump next week and then will continue chemo pump twice a month for 4 months. After all this we have been looking forward to the reversal. That will take place about 4 weeks after all treatment. The bag makes him very self conscious and has leaked. He won't go in public other than the doctors. Is the reversal really that difficult? I don't want to bear any negative news about his hopes of getting his butt back. But I do want to be prepared if he is going to have problems. The surgeon never mentioned any of this. I would love to hear any advice on making this an easier transition. Thanks!
  • Lifeisajourney
    Lifeisajourney Member Posts: 216
    #9
    Vaseoline
    I was lucky and just had right ascending colon removed, but I have had terrible hemmroids for years and of course diaherra all the time since surgery, so what has kept me sane are hot sitz baths and I use vaseoline. Before cancer I had tried tons of prescriptions for hemmr. nothing really ever helped greatly, but after cancer I found that if did the baths occasionally and always used vaseoline life was ok, I have just started not carrying it with me in my purse with my clean underwear......life is getting better...something to try, of course it only helps the hemmr. it would not eliminate any surgery pain. Good luck, I hope it works for someone else, it turned out to be one the easiest solutions during this fun time. Pat
  • stratplayer
    stratplayer Member Posts: 42 Member
    #10
    Bbandboys said:

    Wow...sorry to hear this. My
    Wow...sorry to hear this. My husband (47yo) had major resection with illeostomy in May. He is finishing 6 weeks of radiation/chemo pump next week and then will continue chemo pump twice a month for 4 months. After all this we have been looking forward to the reversal. That will take place about 4 weeks after all treatment. The bag makes him very self conscious and has leaked. He won't go in public other than the doctors. Is the reversal really that difficult? I don't want to bear any negative news about his hopes of getting his butt back. But I do want to be prepared if he is going to have problems. The surgeon never mentioned any of this. I would love to hear any advice on making this an easier transition. Thanks!

    Bowel Training
    Maybe you should ask your surgeon about the bowel management training.
    MD Anderson has a complete plan setup and made my wife and I very aware of the difficulty of the bowel training.

    This is not to say that your husband will have any problems. I can only go by what I have learned in the process.

    I have read many peoples statements that have had no problems. On the other hand, I have 2 local friends that have had the Ileostomy reversal. Both are having pain and bouts of no control.
    One is not taking any meds like Immodium/ Lomotil and The other one is.

    Good Luck and talk to your Surgeon and Medical Oncologist.
  • PamPam2
    PamPam2 Member Posts: 370 Member
    #11
    stratplayer said:

    Thanks for the suggestion
    Thanks for the suggestion Pam. The Proctozone HC cream is by script only?

    script
    Yes the proctozone-HC is prescription only It is a 2.5% hydrocortisone cream made especially for the rectal area, I had tried the over the counter stuff with no success. It is worth a try, anything is when you are going through this. I would cry too and feel like I could pass out the pain was so bad, and have to curl up after going till the pain subsided. My experience is that I did heal up after modifying my diet some, using a stool softener daily and the cream, and time.
    Pam
  • vhtqm1
    vhtqm1 Member Posts: 107
    #12
    you should see a Gastro Surgeon
    i would have a Surgeon take another look. are you sure you don't have an 'anal fissure?'

    ed
  • stratplayer
    stratplayer Member Posts: 42 Member
    #13
    Annabelle41415 said:

    Pain
    Sometimes I still get the immense pain from going so much. Using Calmoseptine ointment is a big help. Your drug store doesn't put this on the shelf, but it is OTC and if they don't have it in stock they can order it. Buy the 4 oz or bigger size as it is more cost effective. There were times when a reversal of the reversal is the only thing that I would want. There were nights that they pain was so bad, I just sat there and cried so know exactly where you are coming from. Try that ointment though. It is used a lot in nursing homes for people that have frequent bowel movements. Good luck and hope you feel better soon.

    Kim

    Pain
    Thanks Kim for responding. I will keep this in mind. I started using a triple strength antibiotic onitment last night and it is much better this morning. I am not crying on the toilet this morning thank God.

    Sincerely,

    Mickey
  • stratplayer
    stratplayer Member Posts: 42 Member
    #14
    vhtqm1 said:

    you should see a Gastro Surgeon
    i would have a Surgeon take another look. are you sure you don't have an 'anal fissure?'

    ed

    Pain in the butt
    Thanks Ed for your response. I started using triple antibiotic oniment last night and it appears to be better this morning. It was burning last night after the secong application. Oh yeah but not like it has been.
    Where do you stand on your battle?

    Mickey
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    #15
    Until recently
    Until about three weeks ago I had diarrhea about three days a week, usually in a row, doing the MD Anderson Poop Protocol. My surgeon said, at my last appointment, that if I needed anything more, tinture of opium was next on the agenda. Well, I have had diarrhea for almost three weeks straight now and I think it is time to talk opium. My onc had a suggestion of another drug that began with a "S.". Yeah, I know that is not much to go on, but there you have it. If those don't work a permanent ileo (I have no colon) will be on the table.

    I never used Sayman salve but Calmoseptine works pretty well for me - basically zinc oxide with a bit of menthol for the butt burn. Balneol is also good for cleansing the butt prior to slathering on the cream.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #16
    Just a shot in the dark....
    But what does your diet look like?

    Stuck bowel? Are you eating plenty of fresh fruits and vegies, none or little cheese products? Very little beef? LOTS of fluids?

    Loose bowel? When I get out of control with loose bowel, I start with the BRAT diet for a day or so. Banannas, Rice, Applesauce, Tea. The banannas are a natural constipator. Cheese is, too. And this diet gives your bowel a rest.

    Another thing, have you tried repopulating the natural flora and fauna in your bowel? I ate Activia once a day...the Probiotics are what help. Also natural brown rice. My friend was in this situation, and I can't remember what else...darn chemo brain!!!! I will try to call her to ask...

    As you can see by my bio, I have no rectum or sigmoid colon. My descending bowel was fashioned into a permanent internal bag. The biggest thing I found to win the day was patience. Yes, it took a year to retrain my rectum to hold, after 48 years of being a processing organ. I ate mild, didn't drink much, and introduced foods back one at a time, so that I could see how my 'new' rectum reacted. I am now just as potty trained as anyone with all of their digestive organs...but, I just passed 5 years...

    As far as hemorroids, I have 2 doozies...I'm careful not to get too plugged, because the result is pain and bleeding (which, for a semi-colon, FREAKS me OUT!!!!). If it does happen, I use triple antibiotic ointment, like was already suggested. Or A and D ointment. NOT the cream...doesn't stick as well. In a pinch, I will use desitin (baby stuff). I also make sure to stay clean and dry...cornstarch works great!

    Hugs, Kathi
  • stratplayer
    stratplayer Member Posts: 42 Member
    #17
    vhtqm1 said:

    you should see a Gastro Surgeon
    i would have a Surgeon take another look. are you sure you don't have an 'anal fissure?'

    ed

    Fissures
    Hey Ed, you hit the rectum on the head.
    My GP found two fissures and gave me a script for Rocket Suppositories for Fissures.
    They do not work to well with constipation.
  • John23
    John23 Member Posts: 2,122 Member
    #18
    One thing not mentioned....
    One thing not mentioned....

    (but it's been noted on other boards)

    Re:
    "I use Immodium, Lomotil, Citrucel, "

    Your body is attempting to re-learn it's normal pattern, and
    using stuff to force the digestion one way or the udder, is only
    adding to the cornfusion.

    Try eating normal foods, and relaxing. Your system should start
    to function the way it had all by itself, with no outside help.

    I personally would hold off going back to work until things
    are better stabilized; there's no sense making things worse
    by trying to rush into "normality".

    One poop at a time, ya'know what I'm sayin'?


    John
  • vhtqm1
    vhtqm1 Member Posts: 107
    #19
    stratplayer said:

    Fissures
    Hey Ed, you hit the rectum on the head.
    My GP found two fissures and gave me a script for Rocket Suppositories for Fissures.
    They do not work to well with constipation.

    very painful
    amazing even though you were in so much pain and probably still are, you seemed to handle this very well. i'm glad you have an answer. i experienced something very similar and i got to the point to where i was 'afraid' of eating. glad to hear your on the right track now.

    ed

    i'm fighting my own battles just like the rest of us. been trying to get some digestion and pain management issues resoloved but it's been a slow road. i hope to get stable soon so i can resume chemotherapy.
  • vhtqm1
    vhtqm1 Member Posts: 107
    #20
    stratplayer said:

    Fissures
    Hey Ed, you hit the rectum on the head.
    My GP found two fissures and gave me a script for Rocket Suppositories for Fissures.
    They do not work to well with constipation.

    by the way
    when i experienced an 'anal fissure' this is how i was told to care for this. i took 'Peril Colace' and 'Miralax' twice a day. this helped keep the BM's soft so you don't interfere as much with healing. drink plenty of water and slowly add fiber to your diet and i mean slowly. i used medical wipes to keep the area clean and you can get relief by sitting in a hot tub and or sitz bath. overall just keep the hygene up and stools soft. hope this helps.

    ed

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