Post Surgery Compliactions Help!

Mara20
Mara20 Member Posts: 4
in Colorectal Cancer #1

I was wondering if anyonhe would be able to answer some questions. My boyfriend was diagnosed with colorectal cancer in October of last year, he had a malignant tumor located in his rectum. He underwent cemotherapy and radiation and last week he had colon resectio surgery. The doctor said it was a total sucess, he removed all of his rectum and part of the colon, leaving just enough tissue so he would still be able to have normal bowel movements. He has an ilesotomy until the colon heals. Once he came out of the surgery he was feeling as well as can be expected, but the ileostomy was working, in the following days he developed ileo (his intestines stopped working due to the shock of the surgery...or so we thought) he was throwing up constantly and could not tolerate any food, his stomach was distended. The doctor did a colonoscopy to make sure that everything was ok and that there was no necrosis, as it turns out part of the colon that was connected didn't heal properly (i.e. it was still open) this was the cause of the ileo and him having very very foul smelling bowel movements. Fortuneately, he didn't have an infection or any necrosis and the doctor said that he would need to clean and irrigate the wound about 2-3 times a day so it could heal and close properly. This is the 10th day he's been in the hospital...they had him on a liquid diet but yesterday they started giving him solid foods, he hasn't thrown up in 48 hours and the ileostomy is working again, but he still feels pain (on and off) and discomfort and is still having bowel movemens which are less foul smelling and less frequent. The doctor tells him its normal, but doesnt indicate when the pain will go away, he is supposed to get discharged tomorrow. I want to know if all that he is feeling is normal, or we should be conerned?? Please share your opinions or experiences with me. He's only 30 and it breaks my heart that he is going through all this, it is draining him emotionally. On the plus side, it looks like the cancer is gone, there are no traces of cancer in the area that they removed. Please Help!!

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #2
    Hi Mara

    Our plumbing does not like to be messed with...and when you do, it lets you know about it. 

    Any kind of resection...temp or perm...is going to take time period.  The bowel has to re-learn itslef with the new plumbing job that the surgeon gave him...there is no set timetable for this.  Mother Nature works on her own schedule.

    It's really a day by day thing...

    I can read in your post how young you both are...and how much new all of this is to you...I don't want to overwhelm you...for now, just get him home...manage his pain with medication...but be careful, pain meds can lead to constipation, so have him drink as much liquid as he can tolerate...water mostly. 

    It's good that they can't see anymore cancer right now...by no means, is this an indicator that it is all gone...I would imagine they will put him on some type of chemotherapy...and monitor his progress through labs and scans. 

    He's pretty young...you might ask him if there is a family history of this with anyone he knows...on either side of the family...could be genetic...there are certain cancers that are more agressive than the standard adeocarcinoma...like Lynch, or Signet Ring. 

    Have him KRAS tested too...that will determine if he is eligible to do drugs like Erbitux or Vecitibix...down the road, if some of the other drugs don't have the response necessary. 

    There's just alot going for you...just get him home...watch him...report to the doctor what you are seeing...and take it from there...he's got to heal from surgery before the next step is taken anyway.

    You won't get there overnight...and he won't be going anywhere overnight either....it's early in the fight and you've thrown your first few punches...and taken a couple.

    Welcome to the board...I'm sure others will provide you their experiences shortly. 

    Breathe and hang on...lots of experiences here.

    -Craig

     

     

     

     

  • 3wheels51
    3wheels51 Member Posts: 2
    #3
    I had my operation on the

    I had my operation on the 27th november 2012 and discharged about 7 days later. i had a fistula between the bowel and bladder so got two parts resized but basically they took the s bend out which had the cancer in it. ( s bend is from the colon to the anus) i know what the pain is like and it will take about 4-6 weeks for it to go away. the pain is basically muscle repair that i can remember as being the main part of discomfort which gets less and less each week. if the doctor says everything is working properly then dont stress the pain will go away. remember rome wasnt built in a day. i know i spent the first 3 weeks at home laying on my back as much as possible so i wasn,t in pain. the worst thing i found was sitting, it hurt up until about 10 days ago but it,s all part of your body healing itself. i know he probably wont feel like it but moving around as much as he can will help heal, i called it physio. the best part is that as each week goes by he will notice how much better the pain is and that it really is getting better. the best thing he can do with his healing is dont get down stay positive it does get better and besides i know dam sure i dont want to go through all that ever again, yeah it,s the pitts and hurts like hell but each day away from the operation feels better. i only took pain killers for about a week after being home unless i had to go back to hospital for checks and tests then i would pop a pain killer for the trip as the other half would hit every hole and bump on the road which really does hurt. glad i can drive myself now. drink as much fluid as possible so the plumbing works regulary, i went 3 days without a bowel movement week before xmas and it is very uncomfitable so best advise is keep the plumbing regular. good luck and dont stress it does get better.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #4
    We're all on the same road at a different place

    I had my bowel resection Nov 23rd of last year. I was in hospital 5 days (seemed like five weeks) and sent home with the standard list of what to expect and what to do and not do. 

    I was totally frustrated at how vauge the 'what to expect' part of my release papers were, and ended up second guessing allot of things that I didn't understand were going on with me. 

    When you think of what your boyfriend has just experienced, being opened up, chopped around, parts removed, sewn back up, bits added, then you've got to know that there will be some extent of discomfort while everything not only heals, but gets over the shock of the procedure. 

    Each of us are different, our bodies are different so I can't tell you what your boyfriend should expect. I was sitting up and walking around the day after. The only thing that really hurt was my IV, where it rubbed a sore on my hand.

    I would say that this would be a great time for him to listen to what his body is telling him and learn what it can and can't tolerate. He mustn't try and tough it out without pain meds, they are there to help make us comforable as our bodies repair. 

    I'd also listen to the Doctor, who seems to be doing all he can by the sounds of it. But alas, if you still don't feel right about what he is feeling, don't be shy to tell the Doctor or even look for a second opinion. 

    I agree with the posts above about getting him home. Being home, in your own enviroment feels so good. I mean, who can heal in those uncomfortable hospital beds?!!

    Good luck to your boyfriend and to you. Its a huge life changer for sure. You are obviously a caring partner, I am glad that you have discovered this fourm. Be sure and stay here for a while. 

    Good luck!

  • Coppercent
    Coppercent Member Posts: 158
    #5
    Take it one day at a time.

    Everyone heals differently so it is hard to say how he should or should not be feeling. Run everything by his doctors.  Just wanted to say it will get better.  I had my whole rectum removed and a temp ilieostomy put in 11/15/11. I had a great surgeon who laid out exactly what to expect at each step. He was very blunt at what all could go wrong. Scary but grateful he was so honest. 

    Then I had chemo because I had positive lymph nodes. I had my ilieostomy reversed 10/03/12.  I have adjusted well and I am back to normal. There is light at the end of the tunnel. Remember that there is a lot of misinformation on the web. Write down your questions and take them with you to the doctor's appointments. If you can try to find other patients of your surgeons that have a same or similar diagnosis that you can talk to. Being able to do this kept me sane at times. I was told by online people that no rectum meant I would be in diapers the rest of my life. Which was incorrect information so it was good to be able to talk with others that had no rectum that now had normal bowel movements. Good luck on the journey. 

  • Mara20
    Mara20 Member Posts: 4
    #6
    3wheels51 said:

    I had my operation on the

    I had my operation on the 27th november 2012 and discharged about 7 days later. i had a fistula between the bowel and bladder so got two parts resized but basically they took the s bend out which had the cancer in it. ( s bend is from the colon to the anus) i know what the pain is like and it will take about 4-6 weeks for it to go away. the pain is basically muscle repair that i can remember as being the main part of discomfort which gets less and less each week. if the doctor says everything is working properly then dont stress the pain will go away. remember rome wasnt built in a day. i know i spent the first 3 weeks at home laying on my back as much as possible so i wasn,t in pain. the worst thing i found was sitting, it hurt up until about 10 days ago but it,s all part of your body healing itself. i know he probably wont feel like it but moving around as much as he can will help heal, i called it physio. the best part is that as each week goes by he will notice how much better the pain is and that it really is getting better. the best thing he can do with his healing is dont get down stay positive it does get better and besides i know dam sure i dont want to go through all that ever again, yeah it,s the pitts and hurts like hell but each day away from the operation feels better. i only took pain killers for about a week after being home unless i had to go back to hospital for checks and tests then i would pop a pain killer for the trip as the other half would hit every hole and bump on the road which really does hurt. glad i can drive myself now. drink as much fluid as possible so the plumbing works regulary, i went 3 days without a bowel movement week before xmas and it is very uncomfitable so best advise is keep the plumbing regular. good luck and dont stress it does get better.

    Getting discharged today

    Thank you all for your comments, it's very encouraging to know that there are people who understand what he's going thru, I am very grateful to you for sharing. He is getting discharged today, which instantly changed his emotional state, he seemed happier, which made me happier. I understand that there is a long road ahead for us, we're trying to take it one step at a time...so we don't get overwhelmed and know what we have to tackle next. He will start another round of chemo soon for about four months and he is slowly getting used to the ileostomy. I told him I had joined this forum and all the information you shared, I think it helped him see that he is not alone in this.

  • Mara20
    Mara20 Member Posts: 4
    #7
    Coppercent said:

    Take it one day at a time.

    Everyone heals differently so it is hard to say how he should or should not be feeling. Run everything by his doctors.  Just wanted to say it will get better.  I had my whole rectum removed and a temp ilieostomy put in 11/15/11. I had a great surgeon who laid out exactly what to expect at each step. He was very blunt at what all could go wrong. Scary but grateful he was so honest. 

    Then I had chemo because I had positive lymph nodes. I had my ilieostomy reversed 10/03/12.  I have adjusted well and I am back to normal. There is light at the end of the tunnel. Remember that there is a lot of misinformation on the web. Write down your questions and take them with you to the doctor's appointments. If you can try to find other patients of your surgeons that have a same or similar diagnosis that you can talk to. Being able to do this kept me sane at times. I was told by online people that no rectum meant I would be in diapers the rest of my life. Which was incorrect information so it was good to be able to talk with others that had no rectum that now had normal bowel movements. Good luck on the journey. 

    Having the ileostomy was his

    Having the ileostomy was his worst fear, he didn't want to end up in diapers for the rest of his life, now he's concerned about the reversal and if its painful or not and if he will be able to have regular bowel movements. The doctor told him to take it one step at a time, to get used to having it and understand that he will have accidents once in a while becuase he's not used to having the ileostomy (he had one yesterday because when he changed the bag, he didn't close it properly...he took it in good humor becusae he knew it was normal), then once he's getting used to it, it will be time to reverse it.

  • Mara20
    Mara20 Member Posts: 4
    #8
    Coppercent said:

    Take it one day at a time.

    Everyone heals differently so it is hard to say how he should or should not be feeling. Run everything by his doctors.  Just wanted to say it will get better.  I had my whole rectum removed and a temp ilieostomy put in 11/15/11. I had a great surgeon who laid out exactly what to expect at each step. He was very blunt at what all could go wrong. Scary but grateful he was so honest. 

    Then I had chemo because I had positive lymph nodes. I had my ilieostomy reversed 10/03/12.  I have adjusted well and I am back to normal. There is light at the end of the tunnel. Remember that there is a lot of misinformation on the web. Write down your questions and take them with you to the doctor's appointments. If you can try to find other patients of your surgeons that have a same or similar diagnosis that you can talk to. Being able to do this kept me sane at times. I was told by online people that no rectum meant I would be in diapers the rest of my life. Which was incorrect information so it was good to be able to talk with others that had no rectum that now had normal bowel movements. Good luck on the journey. 

    Having the ileostomy was his

    Having the ileostomy was his worst fear, he didn't want to end up in diapers for the rest of his life, now he's concerned about the reversal and if its painful or not and if he will be able to have regular bowel movements. The doctor told him to take it one step at a time, to get used to having it and understand that he will have accidents once in a while becuase he's not used to having the ileostomy (he had one yesterday because when he changed the bag, he didn't close it properly...he took it in good humor becusae he knew it was normal), then once he's getting used to it, it will be time to reverse it.

  • HanksMom
    HanksMom Member Posts: 5
    #9
    Mara20 said:

    Having the ileostomy was his

    Having the ileostomy was his worst fear, he didn't want to end up in diapers for the rest of his life, now he's concerned about the reversal and if its painful or not and if he will be able to have regular bowel movements. The doctor told him to take it one step at a time, to get used to having it and understand that he will have accidents once in a while becuase he's not used to having the ileostomy (he had one yesterday because when he changed the bag, he didn't close it properly...he took it in good humor becusae he knew it was normal), then once he's getting used to it, it will be time to reverse it.

    Be Vigiliant!!

    Ok - not to scare you but here is my husbands story....he had all of his rectum removed and received the temporary ileostomy.  He was in the hospital for 10 days and we fliew home to Maine....which I think was a huge mistake even though they told us it would be ok.  My husband was in EXCRUCIATING pain.....it went on for weeks with no relief...he could barely get off the couch or out of bed....no one would listen to us that something had to be wrong.  Finally 4 wks later we got a CT scan and they discovered a "pocket" that had formed down near where the colon was attached to the anal area.  He had no tissue left from his rectum so the colon is attached directly to the anal area.  We ended up having to go back to NY for what we thought was a couple days.....and 31 days later we were finally headed back to Maine.  My husband was in the hospital 17 of those 31 days and the 31 days were a nightmare.  He was in the operating room every 3 days to have what they call an endo-sponge inserted/removed...the pocket was quite large and infected and the entire area where the colon was attached to the anal area was excessively inflamed.  It was a long road and it was hard but we have finally been able to move forward with his chemo. 

    So in short - if his pain does not improve in a week please talk to his Doctors. It should not stay at the same level like my husbands did....everyone is different but from everything I've heard and read the pain will start to decrease...even if just a little.  If his pain pills aren't working - call them and let them know you want stronger ones or something different.   Some Dr's don't like to increase the pain meds but sometimes it is very necessary.  His oncologist was wonderful when we finally went to her - she said suffering was not an option.  My husband had no trouble weaning himself off the meds when the time came.

    I hope things are improving!!

    Julie

  • danker
    danker Member Posts: 1,276 Member
    #10
    mara20

     

    I was 78 when I had my tumor removed and given an iliostomy.  Six weeks later I had the iliostomy  reversed, developing a fistula.  The fistula healded itself from the inside out. A colonoscopy when I was 79 revealed i was NED (no evidence of desease). Currently 80 years old and living a normal life.

    He is a young man and will probably do fine. Don't be afraid!!! 

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #11
    HanksMom said:

    Be Vigiliant!!

    Ok - not to scare you but here is my husbands story....he had all of his rectum removed and received the temporary ileostomy.  He was in the hospital for 10 days and we fliew home to Maine....which I think was a huge mistake even though they told us it would be ok.  My husband was in EXCRUCIATING pain.....it went on for weeks with no relief...he could barely get off the couch or out of bed....no one would listen to us that something had to be wrong.  Finally 4 wks later we got a CT scan and they discovered a "pocket" that had formed down near where the colon was attached to the anal area.  He had no tissue left from his rectum so the colon is attached directly to the anal area.  We ended up having to go back to NY for what we thought was a couple days.....and 31 days later we were finally headed back to Maine.  My husband was in the hospital 17 of those 31 days and the 31 days were a nightmare.  He was in the operating room every 3 days to have what they call an endo-sponge inserted/removed...the pocket was quite large and infected and the entire area where the colon was attached to the anal area was excessively inflamed.  It was a long road and it was hard but we have finally been able to move forward with his chemo. 

    So in short - if his pain does not improve in a week please talk to his Doctors. It should not stay at the same level like my husbands did....everyone is different but from everything I've heard and read the pain will start to decrease...even if just a little.  If his pain pills aren't working - call them and let them know you want stronger ones or something different.   Some Dr's don't like to increase the pain meds but sometimes it is very necessary.  His oncologist was wonderful when we finally went to her - she said suffering was not an option.  My husband had no trouble weaning himself off the meds when the time came.

    I hope things are improving!!

    Julie

    Hi Julie,
    God, that sounds
    Hi Julie,

    God, that sounds like a very stressful ordeal. Glad things are improving. Very smart of you guys to inconvenience yourself with travel in order to get the best possible care. I'm sure you won't regret it.

    All the best,

    Chelsea

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