Ileostomy reversal complication

Eryan330
Eryan330 Member Posts: 6
edited April 2016 in Colorectal Cancer #1

Hello, I was diagnosed with Stage 3 colon cancer back in March 2015. I did 8 treatments of 5fu which was followed by 28 radiations. After that, the tumor in my colon was removed as well as 15" of colon. I was given an ileoscopy bag. I kept the bag for 8 weeks then went in for ileoscopy reversal.  My dr said that everything was healed, I was doing well and am 44 yrs of age.  The day after the ileoscopy reversal surgery I had diarrhea bad.  I was traveling to the toilet up to 40 times a day for the first 5 days. Then out of nowhere I became constipated (which I think was due to the Oxys). I stayed constipated for 5 days and my stomach was in excrushiating  that resulted in 2 rescue rides and 3 more days in the hospital. They said it was a small intestine blockage which worked its way out. That was 3 days ago.  Since then, I have  sense of urgency to have a bowel movement every 15 minutes and when I sit on the toilet barely anything comes out. I do this all day and night.  I've also noticed that I can't hold my stool in. If it wants out, it's coming out.  I was looking to hear how others have dealt with the sense of urgency problem and if it ever gets better to hold in your stool.  Thank you

Comments

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #2
    Welcome and I'm sorry you're

    Welcome and I'm sorry you're dealing with this. I had an illeostomy over two years ago and am on the list to have it reversed but stories like yours are part of the reason I might just keep it. I have quite some time to think aboit it anyway. I have no advise or suggestions. I hope it gets better soon.

    Jan

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #3
    Also my problem

    I had the same problem after finishing radiation treatment (surgery came first for me). I couldn't go anywhere, because when I had to go, it was immediate, and often I didn't make it to the toilet, which, in our small house, was only a few steps aways at all times. 

    This lasted for about two months, getting better by the second month.

    When I was able to venture outside, for a little walk, I noticed something interesting. As I apporached my house, the urge for my bowel to release was triggered. Often times I could barely make it through the door. That clued me in to the fact, that my body was starting to play tricks on me. If I could walk around the block with no problem, and then lose my bowel when I saw my house, then it was becoming psychological. 

    That one is even harder to overcome, in my opinion. 

    I had to teach myself to control the urge. I can't tell you how I did it, as I think its personal to each person. 

    Mind over matter is huge in all areas of Cancer. I think its where you need to start. 

    Of course, any concern like this needs to be discussed with your Oncologist or at least his/her nurses. 

    I might not have been too helpful, but I would like to welcome you to the forum. I am glad that you are on the 'other' side of treatment and surgery and hope that your road is clear from now on.  Good luck with getting control of your bowels. 

    Sue

  • John23
    John23 Member Posts: 2,122 Member
    #4
    Eryan.....

    Eryan.....

    The term your want to use is "Ileostomy", an Ileoscopy describes the scoping process they use to inspect the inside of your Ileum.

    The Ileostomy carries almost all liquid product. The liquid is slowly absorbed as the product moves through the length of the intestine. The second half (colon), is larger in diameter and will absorb the balance of the liquid. The longer the stuff sits inside you, the more liquid gets absorbed. Too long, and it can get pretty dry, impossible to  pass, and called constipation.

    The small intestine (ileum) is about 25' long. The large intestine (colon) is about 5' long.

    You can't fool with mother nature without her getting royally pissed off. Mess with the intestines, and you're going to have problems, one way or the other. It takes time for your system to adjust to any change, even if you're careful to put things back exactly the way you think they were....Mom knows things have been screwed with, and someone's gonna' pay.

    Ok.... to slow the system down, they most often will use an opioid. There are opioid medications designed specifically for the digestive system, but you can actually use any opioid. Hydrocodone (10/325) taken in 1/2 pieces can do the job. You do not want to become addicted to them, and that is easy to do. Moderation is the key.

    You do not want to eat or drink high sugar content, since sugar will cause your system to purge and dump water and food product. Any intake of liquid will cause your system to try to pass it quickly. You do not want to become dehydrated, but during this period of adjustment, you'll have to be careful not to drink too much.

    Grapefruit juice can slow things up, but the juice can interfere with some medications. High fiber Orange juice can work to slow the system down also, without the grapefruit interaction..... But for some individuals the sugar content of the Orange juice can incite purging... It's an experiment.

    Your intestines are trying to figure out what the hell you've done to them. It's going to take some time for them to re-establish some sort of synchronization. If you're going to go back on Chemo, etc, you may want to seriously consider keeping an ileostomy. It's not that difficult living with one; kinda like being married, you just have to get used to putting up with all the crap you never had to look at 24/7/365... You'll get over it; we all have eventually.

    It usually takes a few weeks for things to settle down, so you mind as well relax and enjoy the quality time. Get some soft toilet paper, maybe a soft toilet seat, some quality magazines, or a portable TV or laptop. Just don't drop it in the latrine. I bought a porta-potti. It's a camping type, complete with it's own flush, etc. Six gallon capacity and it fits into the van nicely. Easy to empty almost anyplace. I look for Trump signs, but it's a political statement for me. Use your own choice of dumping location.

    You'll live through this, trust me.

    John

  • Eryan330
    Eryan330 Member Posts: 6
    #5
    John23 said:

    Eryan.....

    Eryan.....

    The term your want to use is "Ileostomy", an Ileoscopy describes the scoping process they use to inspect the inside of your Ileum.

    The Ileostomy carries almost all liquid product. The liquid is slowly absorbed as the product moves through the length of the intestine. The second half (colon), is larger in diameter and will absorb the balance of the liquid. The longer the stuff sits inside you, the more liquid gets absorbed. Too long, and it can get pretty dry, impossible to  pass, and called constipation.

    The small intestine (ileum) is about 25' long. The large intestine (colon) is about 5' long.

    You can't fool with mother nature without her getting royally pissed off. Mess with the intestines, and you're going to have problems, one way or the other. It takes time for your system to adjust to any change, even if you're careful to put things back exactly the way you think they were....Mom knows things have been screwed with, and someone's gonna' pay.

    Ok.... to slow the system down, they most often will use an opioid. There are opioid medications designed specifically for the digestive system, but you can actually use any opioid. Hydrocodone (10/325) taken in 1/2 pieces can do the job. You do not want to become addicted to them, and that is easy to do. Moderation is the key.

    You do not want to eat or drink high sugar content, since sugar will cause your system to purge and dump water and food product. Any intake of liquid will cause your system to try to pass it quickly. You do not want to become dehydrated, but during this period of adjustment, you'll have to be careful not to drink too much.

    Grapefruit juice can slow things up, but the juice can interfere with some medications. High fiber Orange juice can work to slow the system down also, without the grapefruit interaction..... But for some individuals the sugar content of the Orange juice can incite purging... It's an experiment.

    Your intestines are trying to figure out what the hell you've done to them. It's going to take some time for them to re-establish some sort of synchronization. If you're going to go back on Chemo, etc, you may want to seriously consider keeping an ileostomy. It's not that difficult living with one; kinda like being married, you just have to get used to putting up with all the crap you never had to look at 24/7/365... You'll get over it; we all have eventually.

    It usually takes a few weeks for things to settle down, so you mind as well relax and enjoy the quality time. Get some soft toilet paper, maybe a soft toilet seat, some quality magazines, or a portable TV or laptop. Just don't drop it in the latrine. I bought a porta-potti. It's a camping type, complete with it's own flush, etc. Six gallon capacity and it fits into the van nicely. Easy to empty almost anyplace. I look for Trump signs, but it's a political statement for me. Use your own choice of dumping location.

    You'll live through this, trust me.

    John

    Thanks John. This was the

    Thanks John. This was the positive feedback I was hoping for.  Ill try to relax and let my intestines heal and figure out what they need to do. 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #6
    John23 said:

    Eryan.....

    Eryan.....

    The term your want to use is "Ileostomy", an Ileoscopy describes the scoping process they use to inspect the inside of your Ileum.

    The Ileostomy carries almost all liquid product. The liquid is slowly absorbed as the product moves through the length of the intestine. The second half (colon), is larger in diameter and will absorb the balance of the liquid. The longer the stuff sits inside you, the more liquid gets absorbed. Too long, and it can get pretty dry, impossible to  pass, and called constipation.

    The small intestine (ileum) is about 25' long. The large intestine (colon) is about 5' long.

    You can't fool with mother nature without her getting royally pissed off. Mess with the intestines, and you're going to have problems, one way or the other. It takes time for your system to adjust to any change, even if you're careful to put things back exactly the way you think they were....Mom knows things have been screwed with, and someone's gonna' pay.

    Ok.... to slow the system down, they most often will use an opioid. There are opioid medications designed specifically for the digestive system, but you can actually use any opioid. Hydrocodone (10/325) taken in 1/2 pieces can do the job. You do not want to become addicted to them, and that is easy to do. Moderation is the key.

    You do not want to eat or drink high sugar content, since sugar will cause your system to purge and dump water and food product. Any intake of liquid will cause your system to try to pass it quickly. You do not want to become dehydrated, but during this period of adjustment, you'll have to be careful not to drink too much.

    Grapefruit juice can slow things up, but the juice can interfere with some medications. High fiber Orange juice can work to slow the system down also, without the grapefruit interaction..... But for some individuals the sugar content of the Orange juice can incite purging... It's an experiment.

    Your intestines are trying to figure out what the hell you've done to them. It's going to take some time for them to re-establish some sort of synchronization. If you're going to go back on Chemo, etc, you may want to seriously consider keeping an ileostomy. It's not that difficult living with one; kinda like being married, you just have to get used to putting up with all the crap you never had to look at 24/7/365... You'll get over it; we all have eventually.

    It usually takes a few weeks for things to settle down, so you mind as well relax and enjoy the quality time. Get some soft toilet paper, maybe a soft toilet seat, some quality magazines, or a portable TV or laptop. Just don't drop it in the latrine. I bought a porta-potti. It's a camping type, complete with it's own flush, etc. Six gallon capacity and it fits into the van nicely. Easy to empty almost anyplace. I look for Trump signs, but it's a political statement for me. Use your own choice of dumping location.

    You'll live through this, trust me.

    John

    Oh John, you're the best. I

    Oh John, you're the best. I love your posts.

    Jan

  • John23
    John23 Member Posts: 2,122 Member
    #7
    Eryan330 said:

    Thanks John. This was the

    Thanks John. This was the positive feedback I was hoping for.  Ill try to relax and let my intestines heal and figure out what they need to do. 

    Dehydration......

    Dehydration......

    Eryan, you DO NOT want to get dehydrated, and it's easy to have happen during this period. I would ask the physician about getting IV hydration, rather than attempt to stay hydrated via oral (ingestion).

    Drinking more liquid will cause a more rapid discharge of liquid. When you get the hydration via an IV, it's getting into your circulatory system without involving the intestines and digestive tract. The Doc may disagree, but it's worth asking about. Opinions differ, and it depends a lot on the patient's condition....

    If there are any problems, be sure to ask right away. I became dangerously dehydrated during hospital "recovery" in 2006; It happens. But it doesn't have to happen. Ya' know?

    They give you antibiotics in an effort to keep infections low during healing, but all antibiotics include dehydration as a side effect.. I try to keep in mind that they really are not trying to kill me, even if I hear them whispering about it.

    Usually, sipping water at about 4oz per hour will do you OK... But it depends on how fast you're losing the water. During the period of readjustment, the loss can be very rapid and subtle. Weakness, rapid heart rate, lack of appetite and lack of thirst, the tenting of your skin (Pull it; it stays pulled), all signs of later stages of dehydration. Terry Schiavo died of dehydration. The cerebral  cortex dries up and you become Mr. Potato head. Not that there's anything wrong with that...

    Stay in touch, Eryan!

    And Jan..... Thanks. Not everyone feels as you do, however.

    Be well,

    John

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #8
    John23 said:

    Dehydration......

    Dehydration......

    Eryan, you DO NOT want to get dehydrated, and it's easy to have happen during this period. I would ask the physician about getting IV hydration, rather than attempt to stay hydrated via oral (ingestion).

    Drinking more liquid will cause a more rapid discharge of liquid. When you get the hydration via an IV, it's getting into your circulatory system without involving the intestines and digestive tract. The Doc may disagree, but it's worth asking about. Opinions differ, and it depends a lot on the patient's condition....

    If there are any problems, be sure to ask right away. I became dangerously dehydrated during hospital "recovery" in 2006; It happens. But it doesn't have to happen. Ya' know?

    They give you antibiotics in an effort to keep infections low during healing, but all antibiotics include dehydration as a side effect.. I try to keep in mind that they really are not trying to kill me, even if I hear them whispering about it.

    Usually, sipping water at about 4oz per hour will do you OK... But it depends on how fast you're losing the water. During the period of readjustment, the loss can be very rapid and subtle. Weakness, rapid heart rate, lack of appetite and lack of thirst, the tenting of your skin (Pull it; it stays pulled), all signs of later stages of dehydration. Terry Schiavo died of dehydration. The cerebral  cortex dries up and you become Mr. Potato head. Not that there's anything wrong with that...

    Stay in touch, Eryan!

    And Jan..... Thanks. Not everyone feels as you do, however.

    Be well,

    John

    John, I got a bit of a blast

    John, I got a bit of a blast from another member privately not long ago so I feel your pain.

  • DD3
    DD3 Member Posts: 136 Member
    #9
    Litte late

    here.  Haven't been around in awhile.  My wife's reversal was... well... interesting.  What we learned is the doctors were wrong.  Said basically upon here release from the hospital she could eat whatever she wanted.  Uh, no.  Her body wasn't ready for it.  Diet played a huge role in her recovery.  The sense of urgency was huge!!!  We are talking seconds mattered in some cases.  Going out in public we had to be aware of where bathrooms were located.  Because we never knew.   Number of bowel movements ranged greatly over the first two months.  There seemed to be no "normal" on any given day.  Fast foward three years later.  Things are so much better.  Control and frequency are more manageable.  Diet still to this day needs to be watched.  I believe in my heart we are probably at our new normal.  My wife takes fiber everyday to bulk things up.  Seems to help.  I promise you things will get better.  The body will "heal" itself per se.  Good luck.

  • danker
    danker Member Posts: 1,276 Member
    #10
    DD3 said:

    Litte late

    here.  Haven't been around in awhile.  My wife's reversal was... well... interesting.  What we learned is the doctors were wrong.  Said basically upon here release from the hospital she could eat whatever she wanted.  Uh, no.  Her body wasn't ready for it.  Diet played a huge role in her recovery.  The sense of urgency was huge!!!  We are talking seconds mattered in some cases.  Going out in public we had to be aware of where bathrooms were located.  Because we never knew.   Number of bowel movements ranged greatly over the first two months.  There seemed to be no "normal" on any given day.  Fast foward three years later.  Things are so much better.  Control and frequency are more manageable.  Diet still to this day needs to be watched.  I believe in my heart we are probably at our new normal.  My wife takes fiber everyday to bulk things up.  Seems to help.  I promise you things will get better.  The body will "heal" itself per se.  Good luck.

    Healing

    When my iliostomy was reversed.I developed a fistula to where the stoma was.  Thus 6 more weeks with a bag, however the fistula healed itself from the inside out!! Ever since-normal plumbing!  Occasional diarrhea preceeded by constipation==livable side effect.

    NED for almost 6 years.  Good luck to one and all.

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