Illeostomy reversal patients

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khl8
khl8 Member Posts: 807
edited March 2014 in Colorectal Cancer #1
I had me reversal back in Septmeber and other than some retraining, it seems to be going well. Question though to those who have had one. Now that I am somewhat at my new normal I have noticed something rather odd and wonder if anyone else experiences this, When I go more than a day without having a BM ( and this happens on occasion) the site on my lower abdomen where the bag used to be, swells a bit, it does not hurt and will go away when I go the bathroom. The weird thing is that I have begun to work on losing some weight and am becoming very careful about what I am eating, so this past week, all i ate was chicken, pasta, that kind of thing, and the BM's were regular and no swelling. Well, the other night Ihad a hamburger and when I woke up the next morning my illeo site was puffy again and I have not pooped yet.
Is red meat harder to digest? I am thinking that it is not passing the repaired part of my intestine as easly as other foods.
anybody have this happen or have ideas? I am not in any pain, there is not a blockage, it just kind of stalls in this area.
Kathy

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  • funnyguy
    funnyguy Member Posts: 89
    #2
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    I thought that I was the
    I thought that I was the only one. my reversal was a little over 2.5 years ago now. But when I eat red meat, it's not pretty and I almost feel spasms at time near the ileostomty site. strange really. So I stick to poultry and fish which are easily digested.

    But I'd have to say that you should probably talk to a doc anyway...after several tests for me, it turned out to be scar tissue.
  • PamPam2
    PamPam2 Member Posts: 370 Member
    #3
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    Puffy
    Yes, red meat is harder to digest, not that that stops me from having it when I want. I get that too, and sort of spasms in that area, like I can "feel" food and gas moving through there. One thing, I did go to physical therapy and learn scar massage techniques, they found several areas that had not "grown together" and with the proper massage the muscle knitted back together properly, lessening the chances of a hernia, the massage also keeps the adhesion tissue stretched and loose, so it doesn't grab or tear, I was having instances of this before-very painful. And it also made the outside scar tissue that was thick and lumpy flatten out and soften up a lot. It is a good idea to ask your doctor about your situation. Best wishes
    Pam
  • tiny one
    tiny one Member Posts: 465 Member
    #4
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    I have noticed where my ileostomy scar is that sometimes I am puffier around it. Seems to do this after eating larger amounts for several days in a row. Then the puffiness subsides. I'm sure this has to do with how my reversal surgery was done and how I was reconnected.
  • khl8
    khl8 Member Posts: 807
    #5
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    tiny one said:

    I have noticed where my ileostomy scar is that sometimes I am puffier around it. Seems to do this after eating larger amounts for several days in a row. Then the puffiness subsides. I'm sure this has to do with how my reversal surgery was done and how I was reconnected.

    I will tell the doctor about
    I will tell the doctor about it, learned my lesson about ignoring things! as I learn my new body I am attempting to keep track of what works and what doesn't and this one of those things that seemed to coincide with what I am ingesting.
    Glad I am not the only one!
    Kathy
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #6
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    tiny one said:

    I have noticed where my ileostomy scar is that sometimes I am puffier around it. Seems to do this after eating larger amounts for several days in a row. Then the puffiness subsides. I'm sure this has to do with how my reversal surgery was done and how I was reconnected.

    Have a bulge somewhat on the top of my scar but it has been there since the reversal. If laying flat on bed it flattens right down. Think it was the way it was stitched and it is just a little area of fat above the scar and where he tacked it down. I'm not a heavy person but do have a little middle age pouch there and doctor says the incision looks good. Never noticed anything when eating red meat or chicken. That little bulge stays the same.

    Kim
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    #7
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    Short while
    It has only been a short while for me, less than two months. My ileo site has healed wonderfully and never gives me problems. Right now I am staying away from red meat and dairy as they are both hard to digest for me. I have had diarrhea for about three days after moderate, but slow advances in having thicker output. I never get cramps, bloating or anything else that seems to affect my GI tract (what is left of it - total colectomy). You might have an adhesion or stricture at the ileo site that could be making things more bothersome for you, especially hard to digest foods and slow moving foods like red meat.
  • Bbynurz
    Bbynurz Member Posts: 2
    #8
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    Going to get reversal

    I am new to this forum.  As my name suggests I am a baby nurse.  I've taken care of many babies with colostomy's and never thought I'd be the one with a bag.

    Well at the end of this month after looking forward to reversal since day #1, I am a bit worried.  I had my barium enema which pronounced everything was fine but I have to say, if passing a stool is anything like that test was, I will need more than a vicodin.  I am usually very reserved but I was quite vocal during the exam.  My surgeon was nothing short of bleak in his explanation of what to expect after surgery and for the rest of my life actually.  I am actually quite encouraged after reading what you all have said.  In story after story I keep hearing how life for you all have improved and I'm so grateful to hear that.  Unless you have gone through this horror show you can't begin to speak about it, I believe.  I had a tumor in my rectum prior to surgery which magically disappeared on the day of surgery and they took 18 lymph nodes which all came out clear.  So in reality if I knew this prior to surgery I would  not have needed surgery or illeostomy.

    Problem is, unless you go in and visualize under a microscope you can't know these things.  I had real good reaction to chemo and radiation prior to surgery and after surgery the chemo was horrible.  I had side effects that nobody could have expected.  They dialed the dose down and down until it was at 50% of original dose and I still lost my hair and had tons of side effects that made my life miserable.  As a parting gift I got bilateral fractures of my sacral ala where I was getting the radiation and that was without falling or doing any injury to that part of my body.  So I am now taking a bone repair medication.  I am more than worried about passing the first stool.  I know I will have to do it before leaving the hospital so all your recommendations are really helpful and again I am really grateful for the information and encouraged by your success.  Yay to all of you !

  • Bbynurz
    Bbynurz Member Posts: 2
    edited December 2017 #9
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    6 months after ileostomy reversal

    I thought it might be helpful to others who have gone through the same thing to hear how it has been since the reversal.  Until now, I actually was not sure how it went since I wasn't sure if or when I might poop myself because I couldn't control it.  Especially at first it was horrible.  I could hardly leave the house without fear of needing to suddenly go.  I wore a pad for stupid protection.  I say stupid protection because it wasn't really going to protect me much if I really had a blow out.  A few times I would think it was safe to take my dog on a short walk around the block but suddenly I would just not be able to hold it at all.  I would stop walking and just stand there and pray I could hold it but .....nope.  I was so worried that was going to be my life from now on.  Well, I can say I continued for months with that fear and I did poop myself but not everyday and not even that much.  I had to really learn to time my meals and going out.  But after 3 months I actually went back to work and didn't poop myself at all.  Believe me, I worried everyday that I would and packed a lunch that would provide the most safety in that regard but I made it.  It's not been an easy road that is for sure and I don't by any means think I am completely out of the woods of embarassing myself either by passing gas that I just can't hold no matter how hard I try but I see progress......real progress.  I see a rainbow where I didn't think I ever would see one.  So, for all of you struggling and feeling like it sucks....it gets better.  Everyone heals at their own rate and before all this, believe me, I took it all for granted.  Red meat is definitely difficult still.  I had a hamburger yesterday and when I got home I was in the toilet.  Vegetables are still iffy but salad seems ok.  I can tolerate fruits pretty well but not ice cream for some reason.  Through all of this I've really tolerated candy real well unfortunately but hey, you've got to have a friend, right?  I just wish I could take a pill to control the gas.  I've never had so much gas in my entire life.  That makes Mexican food not a go and that is my favorite food.  Good luck to everyone and thanks, it's good to read from people going through the same thing.

     

     

  • kojack007
    kojack007 Member Posts: 6
    #10
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    I just had my reversed on Oct 25th.  It took three dyas to finally have a BM.  I actuall took a little milk of mag. to help on the third day.  There is alot of blood from the surgery but l did not experience any pain.  Eat small mounts afterward to allow your body to adjust.  I am still getting used to this.  Yes I have had several Hey i am going to pass gas and dam cleaning myself up from the mess.  There was times when I wouldbe sitting down and as soon as i stood up I had to poop.  It will take time for the muscles colon an nerve ending to remember what to do.  It does get better.  It makes a big differnce on your diet if you can eat healthy and stay away from high fats and red meat.   research what to eat when you have a colostomy and apply that to the first couple of weeks after reversal. It helped me.  Feel you on the mexican food I have a favorite place to go and did knowing what was going to happen.  I think it ws worth it.  Good luck.

     

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