Pre-Surgery Questions

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markatger
markatger Member Posts: 314
edited March 2014 in Colorectal Cancer #1
Hi all,

Well as my rectal surgery date approaches I'm getting a little overwhelmed. So many questions.

-How can I be sure that I do not need a hysterectomy, while I am having rectal re-section. Most of my reports have said that there is no evidence of local spread, but my tumor is through the bowel wall, so it seems like there is a chance that there is microscopic spread in my organs down there that has not been picked up. Also PET and CT scans mentioned cysts on my ovaries and slightly elevated SUV in a fibroid in my uterus. With these abnormalities, I wonder if there would be any benefit to getting a hysterectomy to reduce future problems.

-Ostomy and J-Pouch. I may have to have a J-Pouch. If I need the J-Pouch then I will likely also have a temporary ostomy. I'm trying to research on UOA about any recommendations for placement of the ostomy. I'm sure the nurse will be very knowledgeable about this as well. But I think it would be helpful for me to have this information. I have heard something about finding a place that won't be right on your waistband of clothes.

-What will my bowel movements be like in the long term. I imagine that will depend on whether I need a J-Pouch. I have read about others have total colectomys and having 5-6 bowel movements a day. I don't believe I will have a totol colectomy though, but possibly a J-Pouch. It is a little crazy not knowing what I'm going to wake up from surgery like....

-Ostomy and chemo
Is chemo more difficult with an ostomy?

Hmmm....can't think of anymore questions surpisinngly, I know there is more. I have a full schedule of appts tomorrow: surgeon, onc, pre-op, ostomy nurse where I'll be asking all the questions.

Any experience, suggestions glady welcome : )
Maria

Comments

  • taraHK
    taraHK Member Posts: 1,952 Member
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    These are all good questions --and it is certainly normal to be full of questions as your surgery date approaches!

    Hysterectomy: my understanding is that your surgeon will have a good look at everything while s/he is in there -- and would probably remove anything that looks suspicious. But, it might be worthwhile discussing this issue again with your surgeon if it is concerning you. There seems to be different opinions on having a hysterectomy 'just in case'.

    I understand your concern about 'microscopic' bits. My understanding is that this is what postsurgical chemo is designed to take care of...

    Placement of ostomy. Before the surgery, you should see an ET (stoma nurse), who will discuss ostomy with you and should do a "siting" -- determining the best place for an ostomy should it be necessary. Yes, they usually have you walk around, sit down, etc so they can determine best place for you. Just for information, mine is about 2 inches to the left of my belly button, and 1 inch down from there (roughly). I understand this is pretty typical for a permanent colostomy, but they do try to make sure it is placed right for each individual. Below the waistband is important.

    I had chemo with a (permanent) colostomy. Not a problem at all. I had diarrhea. This wasn't a problem (in fact, in some ways easier than with no colostomy?!). The only issue I had was that I was encouraged to not start to try irrigation until after chemo (because of the diarrhea). This was good advice -- I was able to switch to irrigation afterwards (which can be a terrific option for those with permanent colostomy).

    I'll give you the same advice I give anyone heading into this surgery: (a) make sure you get adequate pain relief after the surgery (b) get up and walking as soon as you can after the surgery, and keep walking after discharge. In my opinion, both these things can aid recovery.

    Best wishes!
    Tara
  • steved
    steved Member Posts: 834 Member
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    A daunting and scary time for you a nd so much must be going around your head. Would agree with Tara about the uterus question- scans and all are fine and seem to indicate in your case that they aren't planning to remove anything extra but they will have a better idea when they are in there. I had a small part of a seminal vesical removed because it looked very cloise to the tumour and tehy decided to remove it during surgery. It came back clear in the end but better safe than sorry. Post op chemo is good at mopping up stuff too small to see that gets left behind.
    I had a temporary ileostomy placed because my anastomosis was very low. I had it on the right just above my belt line and found I couls where trousers with a belt comfortably. the nurse will discuss this through with you in hosptital. it feels like a hge decision that you feel underqualified to particpate in making but they do it every day so be guided by tehm.
    I had teh choice to have my stoma reversed after five weeks before I started cheom or keep it for chemo which I chose in the end. It was easier to have diarrhoea with a stoma than with a healing rectum. Meant I had it for most of a year but I got very used to it and almost missed it after reversal.
    As for bowel motions they will be unsettled initally. The ileostomy output is generally very loose. The bowel then needs to relearn to absorb fluids and teh new rectum needs to learn to hold stoll and increase its capacity. Therefore after teh reversal I was initally going 10-15 times a day for teh first few weeks which has slowly settled to 3-5 times now (about 4 onths on). I think people do better if they haven't had the ileostomy as long as I did but it does just slowly improve. Urgency can be an issue so keep doing pelvice floor exxercises throughout the time that you aren't using y0our rectum as it helps general continence.
    Hope this is helpfula nd I look forward to hearing how it all goes. There is so much we can learn from each other and I value hearing of others experiences so much.
    Best of luck,
    Steve
  • cal79
    cal79 Member Posts: 57
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    Hi Maria,

    I had j-pouch surgery with a temporary ileostomy, which I knew I was getting before surgery so it wasn't quite so scary!

    One piece of advice I can offer is to take 2 favourite pairs of trousers (pants?) with you when you visit the stomal therapy nurse, so that when you pick your site for the stoma you can try a couple of options, just to make sure. I certainly wish I had done this.

    Also, if you have the time and inclination, and are likely to need a stoma, it would be a good idea to get a few bags to practice with, so that you know roughly how to put them on, and to test for any skin reactions.

    As for bowel movements with the j-pouch, I don't know yet as I still have the ileostomy! However, my stomal therapy nurse seems to think that control and function will be very good in the long term, and in my particular case I should be back at work within 10 days with no problems to speak of. Not sure if this will actually be the case, but I'm believing it anyway!

    Good luck with your surgery, hope all goes well.

    Cal :)
  • kangatoo
    kangatoo Member Posts: 2,105 Member
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    cal79 said:

    Hi Maria,

    I had j-pouch surgery with a temporary ileostomy, which I knew I was getting before surgery so it wasn't quite so scary!

    One piece of advice I can offer is to take 2 favourite pairs of trousers (pants?) with you when you visit the stomal therapy nurse, so that when you pick your site for the stoma you can try a couple of options, just to make sure. I certainly wish I had done this.

    Also, if you have the time and inclination, and are likely to need a stoma, it would be a good idea to get a few bags to practice with, so that you know roughly how to put them on, and to test for any skin reactions.

    As for bowel movements with the j-pouch, I don't know yet as I still have the ileostomy! However, my stomal therapy nurse seems to think that control and function will be very good in the long term, and in my particular case I should be back at work within 10 days with no problems to speak of. Not sure if this will actually be the case, but I'm believing it anyway!

    Good luck with your surgery, hope all goes well.

    Cal :)

    Hi Maria. Sorry I can't be of help about the female anatomy(last time I looked I was a fella).
    OOPS..sorry, I digress...just tryin to ease your mind a little with a bit of humour.
    As for post-op Maria I found it extremely comfortable to wear a "caftan". Ok guys n gals, you may well laugh..imagine kangathong looking like Demis Rousos! But I must admit Maria that it was even more comfy than track suit pants..no pressure on the abdomen. Jen and I wish you the very best Maria and hope that you can journey thru your surgery without any problems....you'll be fine sweetie!
    huggs, Kanga n Jen
  • nanuk
    nanuk Member Posts: 1,358 Member
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    taraHK said:

    These are all good questions --and it is certainly normal to be full of questions as your surgery date approaches!

    Hysterectomy: my understanding is that your surgeon will have a good look at everything while s/he is in there -- and would probably remove anything that looks suspicious. But, it might be worthwhile discussing this issue again with your surgeon if it is concerning you. There seems to be different opinions on having a hysterectomy 'just in case'.

    I understand your concern about 'microscopic' bits. My understanding is that this is what postsurgical chemo is designed to take care of...

    Placement of ostomy. Before the surgery, you should see an ET (stoma nurse), who will discuss ostomy with you and should do a "siting" -- determining the best place for an ostomy should it be necessary. Yes, they usually have you walk around, sit down, etc so they can determine best place for you. Just for information, mine is about 2 inches to the left of my belly button, and 1 inch down from there (roughly). I understand this is pretty typical for a permanent colostomy, but they do try to make sure it is placed right for each individual. Below the waistband is important.

    I had chemo with a (permanent) colostomy. Not a problem at all. I had diarrhea. This wasn't a problem (in fact, in some ways easier than with no colostomy?!). The only issue I had was that I was encouraged to not start to try irrigation until after chemo (because of the diarrhea). This was good advice -- I was able to switch to irrigation afterwards (which can be a terrific option for those with permanent colostomy).

    I'll give you the same advice I give anyone heading into this surgery: (a) make sure you get adequate pain relief after the surgery (b) get up and walking as soon as you can after the surgery, and keep walking after discharge. In my opinion, both these things can aid recovery.

    Best wishes!
    Tara

    Maria: placement of the ostomy may depend upon how much of the colon is removed, and your particular plumbing schematic. From what I have read on UOA/IOA/CSN, the colostomy presents fewer complications than the J-Pouch. I have a colostomy, and it is in about the same location as Taras.. when the Stoma nurse measured me for location, she did it while I was laying in bed. I
    suggest that you be measured standing if possible, because the measurement will be more accurate in terms of your waistline. Chemo and the colostomy was probably easier, except with diarreha, which is a problem either way.
    Because of the possibility of microscopic cancer, they will likely do adjuvant chemo/radiation. Mine was through the wall, and I received chemo/rads post surgery. Remained clean for 3 years, then recurrence in the lungs.
    I can't speak to the hysterectomy issue, but because of all your issues, a 2nd opinion is probably warranted. Get as much exercise as possible before your surgery-it will make a difference in your recovery time. I walked every day after the surgery-it helped, and gave me the reassurance that I was getting better. Nanuk