Surgical site a year later

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Carl_Renee
Carl_Renee Member Posts: 84
edited June 2011 in Colorectal Cancer #1
Been awhile since we have been on here. Been dealing with the ups and downs of the whole process.

Going immediate surgery, herbal and radiation route -no chemo thus far have us with no signs of any cancer -thus far:) May 21st was one year when our world changed forever. He hasn't been back to work yet but I think he is about to find a new job to return. I am concerned he isn't ready physically, but mentally he is beyond ready to return. His last hospital stay was only a month ago and that made the 5th time this year!

After numerous ER visits we convinced them to do a colonscopy because there is NO way he is constipated as they kept suggesting. He sticks to a fairly soft near liquid diet as he is afraid to eat much, eats prunes, drinks prune juice, plenty of fluids from water to green tea nearly cut out caffeine completely, gave up red meats, dairy etc went strictly turkey when he has meat, eggs being his best friends. Anyhow they FINALLY 2 stays ago agreed to set him up for a colonoscopy and discovered the surgical site was nearly closed up. He was vomiting bile and still they said he was constipated so I stood my ground something else is wrong after KNOWING full well his diet and it wasn't possible. Glad I did now. Anyhow it happened again only a month later so now we are a week away from another colonoscopy to see if the site needs to be ballooned again. From the sounds of it this could happen every couple of months:/

Has anyone else had issues with the surgical site inside closing up on them? How did you end up handling it. A colonoscopy every couple months sounds a bit invasive. They currently have him on colace, miralax and if needed lactulose! All those laxatives alone have him worried that further damage could be caused. The dr.s of course say oh no you are fine. So just looking to see what others have experienced and what was done. thanks

Carl and Renee

edit to -PS lol just realized today the 12th was one year since I first set up this account sitting in his hospital room as he was readmitted and my feeling helpless looking for answers and others that had traveled the road. Has definitely been a long year for us but life seems to be started to be getting going again. I have a job I love, started my own business and he has been staying home with the kids. We moved for what we felt was better medical care than where we were at. Still anytime he goes in I hold my breath and pray for no bad news. He does have to do testosterone shots monthly how, has lost about 10 teeth and I am even noticing memory is not as it once was. Last CT scan showed changes in his right femur they said spot. Now he has injured this leg many times and so he isn't worried...me on the other hand am concerned. We will know more next month. They said if there are no changes on his next CT then it isn't anything to be worried about and nothing further is necessary. If there are changes they want to do a bone biopsy.

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #2
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    Dear Renee
    Sounds like the year has been a bad news/good news kinda year as it is for many of us.

    I don't recall the surgery your hubby had, as I was just recovering myself. I have not suffered the same problem, but then I have a colostomy. If he doesn't have one, it or an iliostomy may be a final step if they can't manage to keep the internal surgical site open.

    Like your Carl, I would worry about having to take all those meds and still have to go into ER every couple of months.

    If an ostomy is suggested, let us know. There are a number of us who have one. In fact Blake has a list on his expressions page. We will be glad to give you "a what to expect" if it is needed.

    Good luck on the next scan.

    Hugs to you both,

    Marie who loves kitties
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #3
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    sounds challenging
    hi renee,

    your doing a great job as a carer.
    i am going through reconnection hell, so i have huge sympathy for carl.
    just best wishes.

    hugs,
    pete
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #4
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    I'm probably stating the obvious
    it sounds like a bowel obstruction. I had one about 2 months after my first surgery. Possibly the worst experience of all. There was scarring from all of the "work" they did in there. This sounds like the intestine is closing up (like a hose being pinched shut) at the site of the surgery. Or is this something totally different?

    How my situation was handled was they had to go back in and remove scar tissue and clean stuff up and it's been OK ever since.
    I hope this is of some help.
    My best to you both...
    -phil
    PS: I was real anxious to get back to work too, being busy is a good thing but sometimes our minds are ahead of our bodies.
  • Carl_Renee
    Carl_Renee Member Posts: 84
    #5
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    Lovekitties said:

    Dear Renee
    Sounds like the year has been a bad news/good news kinda year as it is for many of us.

    I don't recall the surgery your hubby had, as I was just recovering myself. I have not suffered the same problem, but then I have a colostomy. If he doesn't have one, it or an iliostomy may be a final step if they can't manage to keep the internal surgical site open.

    Like your Carl, I would worry about having to take all those meds and still have to go into ER every couple of months.

    If an ostomy is suggested, let us know. There are a number of us who have one. In fact Blake has a list on his expressions page. We will be glad to give you "a what to expect" if it is needed.

    Good luck on the next scan.

    Hugs to you both,

    Marie who loves kitties

    surgery done
    He had a resection at the sigmoid junction. thanks for the input hopefully it never comes to that after the year he has had- I think it would be totally devastating to him mentally. he is concerned what all the laxatives are going to his system but right now it is helping keep things soft and moving.
  • Carl_Renee
    Carl_Renee Member Posts: 84
    #6
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    pete43lost_at_sea said:

    sounds challenging
    hi renee,

    your doing a great job as a carer.
    i am going through reconnection hell, so i have huge sympathy for carl.
    just best wishes.

    hugs,
    pete

    back at ya
    Best of wishes your way as well. They were making this sound as if it were rare so no offense when I say reading your post makes me feel a bit better. They were talking about a possible stint put in that after a few weeks would have to be removed so 2 surgeries. So before his appt next week for another pending colonoscopy I want to be a bit more informed. we started taking charge after the initial shock and going with the flow with this being new territory for us and being scared...past that to a point and try to go in armed so they know we are serious this is what we know now what options are you willing to offer so we are all on the same page. Much luck your way.
  • Carl_Renee
    Carl_Renee Member Posts: 84
    #7
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    PhillieG said:

    I'm probably stating the obvious
    it sounds like a bowel obstruction. I had one about 2 months after my first surgery. Possibly the worst experience of all. There was scarring from all of the "work" they did in there. This sounds like the intestine is closing up (like a hose being pinched shut) at the site of the surgery. Or is this something totally different?

    How my situation was handled was they had to go back in and remove scar tissue and clean stuff up and it's been OK ever since.
    I hope this is of some help.
    My best to you both...
    -phil
    PS: I was real anxious to get back to work too, being busy is a good thing but sometimes our minds are ahead of our bodies.

    Clean up on aisle 2 lol
    LOL Carl said so what you are saying is clean up aisle 2? at least he still has his sense of humor. Sounds like you are understanding well what we are going thru. They have said bowel obstruction. He has had several and the first several times he was told he was constipated sent home with stronger laxative than the times before. Told the pain meds they had him on would cause these things. Well got to a point he would rather suffer thru the pain than go back in the hospital so stopped taking any meds and still it was happening. Not as frequently but still happened. This 2nd ballooning that took place was more painful than the first so they were worried they perforated but they didn't. Just they stretched it further than the previous Dr. did. the opening on the 2nd time is all of 1 1/2 cm. Their goal is to get it to 2cm and keep it there. But I wonder if that is possible if it is scar tissue we are dealing with which I know is something we questioned. Their answer was radiation shrinks things and the sight was already narrowed with surgery so the combination could have caused this they made it sound like this was rare to be happening so I am happy to read it isn't quiet as rare as they were leading us to believe. Not that he wants to hear another surgery could be possible...to have all this end would better. Something I will be bringing up at next weeks appt.

    thanks a ton for your info on how your situation went.
  • AncientTiger
    AncientTiger Member Posts: 130
    #8
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    Carl_Renee said:

    Clean up on aisle 2 lol
    LOL Carl said so what you are saying is clean up aisle 2? at least he still has his sense of humor. Sounds like you are understanding well what we are going thru. They have said bowel obstruction. He has had several and the first several times he was told he was constipated sent home with stronger laxative than the times before. Told the pain meds they had him on would cause these things. Well got to a point he would rather suffer thru the pain than go back in the hospital so stopped taking any meds and still it was happening. Not as frequently but still happened. This 2nd ballooning that took place was more painful than the first so they were worried they perforated but they didn't. Just they stretched it further than the previous Dr. did. the opening on the 2nd time is all of 1 1/2 cm. Their goal is to get it to 2cm and keep it there. But I wonder if that is possible if it is scar tissue we are dealing with which I know is something we questioned. Their answer was radiation shrinks things and the sight was already narrowed with surgery so the combination could have caused this they made it sound like this was rare to be happening so I am happy to read it isn't quiet as rare as they were leading us to believe. Not that he wants to hear another surgery could be possible...to have all this end would better. Something I will be bringing up at next weeks appt.

    thanks a ton for your info on how your situation went.

    Herniated?
    Just wondering if there might be some hernia issues going on.... When he lays flat on his back after eating a meal, do y'all see movement underneath the skin? I did (and wow did THAT freak me out), but it wasn't TOO big of a deal... the intestine had pushed through the hernia and was resting just under the skin. The surgeon was actually surprised that I hadn't had issues with constipation, as it had actually pinched a portion of the intestine off to the point he had to remove it during the hernia surgery. Of course, up until November it wasn't and issue, as I had an ileostomy, but after that, you would think it would be an issue with constipation, but wasn't.
  • Carl_Renee
    Carl_Renee Member Posts: 84
    #9
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    AncientTiger said:

    Herniated?
    Just wondering if there might be some hernia issues going on.... When he lays flat on his back after eating a meal, do y'all see movement underneath the skin? I did (and wow did THAT freak me out), but it wasn't TOO big of a deal... the intestine had pushed through the hernia and was resting just under the skin. The surgeon was actually surprised that I hadn't had issues with constipation, as it had actually pinched a portion of the intestine off to the point he had to remove it during the hernia surgery. Of course, up until November it wasn't and issue, as I had an ileostomy, but after that, you would think it would be an issue with constipation, but wasn't.

    no hernia
    nope not that issue we know that much:)
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #10
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    Hi Renee
    Hi Renee,

    Thanks for sharing your story here. I haven't had any colon/rectum surgery, so I can't comment on that. I was stage IV at diagnosis, so they focused on my mets to liver and lungs with chemo and I've been doing it ever since (dx was Aug 2007). I did have a liver resection in 5/08,however. I may be facing a rectal resection soon, however, as I have been having a lot of trouble in that area with a rectal tumor recurrence giving me lots of pain and pressure lately- it seems again like it did right before I was diagnosed. I did have radiation, but that has been 3 yrs ago, I don't know if trouble from that would just start up recently. I should be getting a referral soon to a colorectal surgeon to give me her thoughts. My onc's worry about me having surgery is that I'd have to stop chemo for up to 12 weeks & my liver and lung tumors could grow a lot during that time. I worry about that too, but I hate suffering. Does your husband have an ileostomy? I worry about ending up with one or even a permanent colostomy from surgery.

    Lisa
  • Carl_Renee
    Carl_Renee Member Posts: 84
    #11
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    lisa42 said:

    Hi Renee
    Hi Renee,

    Thanks for sharing your story here. I haven't had any colon/rectum surgery, so I can't comment on that. I was stage IV at diagnosis, so they focused on my mets to liver and lungs with chemo and I've been doing it ever since (dx was Aug 2007). I did have a liver resection in 5/08,however. I may be facing a rectal resection soon, however, as I have been having a lot of trouble in that area with a rectal tumor recurrence giving me lots of pain and pressure lately- it seems again like it did right before I was diagnosed. I did have radiation, but that has been 3 yrs ago, I don't know if trouble from that would just start up recently. I should be getting a referral soon to a colorectal surgeon to give me her thoughts. My onc's worry about me having surgery is that I'd have to stop chemo for up to 12 weeks & my liver and lung tumors could grow a lot during that time. I worry about that too, but I hate suffering. Does your husband have an ileostomy? I worry about ending up with one or even a permanent colostomy from surgery.

    Lisa

    ileostomy
    No he narrowly escaped from having a permn. colostomy. His surgeon said should there be a re-occurrence there is no other option as there is nothing left to work with. He only remained in there to try and find good tissue because when he called to update me during surgery...mind you I was still in a state of shock from that mornings news hearing my husband had cancer, the tumor was blocking and immediate surgery was warranted...from somewhere when the dr. called during surgery to update me and said he may come out with a colostomy and if he does it was permn there wouldn't be any going back in and try to reconnect....I said that wasn't acceptable. No clue where it came from and I barely remember saying it...as if he had a choice. If there wasn't any good tissue there wasn't any good tissue....but those words kept him in surgery 1 1/2 hrs longer as the dr. continued to look for something to work with and finally did.

    I count our blessings daily as I know this could have turned out so much worse or totally different circumstances. I am wishing you much luck and many prayers your way. Staying positive and looking at all blessings is what got me thru. I see you have an adorable furbaby to help you thru. I hope you have lots of human help as well to get you thru this all. Carls was stage 2 bordering stage 3. No mets so that was a huge blessing alone. His didn't go thru the colon wall but did the rectal wall so I still worry about what ifs but try to not think about them too much.

    I wish I had stayed in touch on the forum better but the past year really got away and there were times I really could have used to have leaned on people here that completely understood the ups and downs and knew what we were going thru. Carl found himself w/o a job, denied unemployment after never having needed it in his life, found out we had no insurance though pay for it was coming out of his checks....so much happened in such a short period that had we not lived it I would think the person telling the story was crazy.

    Around Christmas finances started to look up, a real life Santa came to the rescue for the kids, January-I was offered an independent contractor position doing what I love, March I was able to take tax return and start my business so now I do both plus take care of Carl when needed. I think I am over protective now to the point I stress when he wants to do anything. Funny a year ago I was a fulltime stay at home mom to working fulltime plus with my own business. Amazing how things change in the blink of an eye. Witnessing it in our lives I tell people you don't know what you don't know....so never say never, never say always just know what you want, believe, have faith and live each day as if it were your last and everything will work out as it should. If nothing else I hope our kids have learned that the past year...albeit the hard way but lesson none the less.

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