My dad will undergo surgery next week to remove the part of his colon where his cancerous tumour is. A CTScan showed that there isn't cancer anywhere else. What can we expect as far as recovery and when do we find out if he needs any follow up chemo or radiation? No one has said anything about further treatment. All we've been told is that he will be in the hospital for a bout a week and most likely will need a temporary colstomy bag for a few days while he heals. I would appreciate any info anyone has for me. Thanks in advance.

Alir:
Your Dad will not know whether he needs chemo until after the surgery, tentatively, and then for sure after the pathology report comes back about a week later. This is when he will be Staged, and they will let you know if there is mets (spread). He should have another test to see about that-- a PET SCAN-- a PET will show if it has spread, but they will know for certain after surgery.

Make sure he is seeing a colorectal specialist, and if the cancer is in the rectum, he would be prescribed pre-operative chemo and RADIATION to shrink the tumor. So, if your Dad was diagnosed a couple of weeks ago, either he 1) Doesn't Understand, 2) Is NOT Seeing a Colorectal Specialist, or 3) Is NOT TELLING YOU, or 4) They do not believe it is serious. Ask him who his Doctor is. Check to see if he/she is ASCRS Board Certified... just ask the office. Ask to talk to the Doctor yourself with his permission.

Has he seen an Oncologist of Radiation Oncologist? That will also tell you how serious they think it is. What is his pre-op staging... T1, T2, T3... they should give you an idea if it's rectal based on a transrectal ultrasound that is performed. This tells you how far into the wall they think it is. Otherwise, the tumor is in the colon. THERE IS NO NEED TO RUSH TO SURGERY unless he has an obstruction, the tumor is physicically obstructing him from having bowel movements. Colorectal Tumors tend to grow slowly and taking a couple weeks to find a GOOD SURGEON is NOT a big deal.

Please see if you can talk to the surgeon and oncologist on the phone yourself if he will let you. You will get MUCH more information NOW instead of waiting. And make sure to find out if the surgeon is ASCRS *American Society of Colorectal Surgeons Accredited. (I assume you are in the US... if not, there are other specialty accrediting boards). If you ARE in the States and he/she is NOT Board Certified, GET HIM TO ANOTHER Surgeon.

Sorry for the long message... I hope it helps. Please do not hesitate to ask further. :)

One last thing, you mention a temporary bag... he will have this for at least a few MONTHS. This mention is what leads me to believe his tumor is rectal, and why he should look into ALL OPTIONS... including Radiation preoperatively. Otherwise, he could end up with a permenant colostomy. Again, a LITTLE waiting to make these decisions and explore options will not make a difference in timing and having the tumor get significantly worse. You are assuring him a better outcome by looking into this.

Regards,
CancerDad :angel:

ATTITUDE IS EVERYTHING!

Thanks so much CancerDad for all of the info. We are actually in Canada so I will check certification here. I have actually been to all appt's with my dad so I really don't think he isn't telling me anything. As far as pre-operative staging no one has said anything. I think he has just a regular surgeon not someone specialized, although this is the type of surgery he usually does. All he has said is that he has used the words 'bowel cancer' and that the tumor is in a good place in the colon for resectioning. That there is a possibility he may need a bag for a few days for healing to take place but nothing else. My dad also has post-polio and has a hard time coping with things and sometimes doesn't want the questions asked if you know what I mean. Thanks again.

AliR:
You can be CERTAIN the BAG will remain for at least 3 months. NOTHING heals in a "few days." This is what has me worried about this surgeon, and why you may want a second opinion. It might just be a miscommunication, but there are Specialists in Canada. And if your Dad doesn't want the questions asked... perhaps for you to know would be of benefit. So you can know what to expect, what is normal, etc. Talk to the surgeon alone. Have Dad wait in the waiting room or exam room while you go with the surgeon into his office. Or call him on the phone.

Good Luck

CD... Not neccessarily Rectal because of having a bag! I have colon cancer and a temp ileostomy...
BUT you are right when you say they are wrong with just having it a few days...
I was told 3 months but now having to do chemo first so it will be a toatl of at least 6 months.
Please please hurry up October when I finish chemo and get the reversal.

Hugs
Maz

Maz:
I hate to disagree, but MOST people who end up with temporary bags are to divert colonic continuity when closer to the rectal region. Otherwise, colorectal surgeons tend to reconnect, typically these days with surgical staplers-- first with what's called a GIA or linear cutter-- it slices out the section of colon to be removed and provides two rows of titanium staples on both sides to provide a closed specimen. Then the colon is re-opened and reattached using sutures, or again staples. There is a circular stapler if reachable through the anus... the stapler extends approximately two feet up-- allowing access to the rectal/sigmoid region only. If the lesion to be transected is higher, it is accomplished again as I said above. Then common stab wounds are created using cautery on the anti-mesenteric borders (sides without the blood supply feeding the colon) and a GIA is again slid into the two stab wounds. It is then stapled, and removed. The colon is then held in opposition (against itself) to close the opening with a TA Stapler (stapler without a blade for cutting)... which just provides staples. These techniques are used depending on whether it is upper colon or sigmoid/rectal, accessability (rectal is usually pretty tight--esp with the male pelvis and TA's or circular staplers are used, and lastly surgeon preference.

A colorectal surgeon uses a diverting colostomy(large intestine through the abdominal wall) or most likely diverting ileostomy(small intestine brought through the abdominal wall) ONLY during rectal resections for fear of infection and tearing of the anastamosis because formed stool is found in the rectal/sigmoid regions. Risk of infection and tear is MUCH lower when the lesion or tumor is higher in the colon should the anastamosis (connection) leak.

Lower in the rectal/sigmoid region (where your tumor was Maz) is where E- Coli (bacteria) is common, as well as bulky stool and worry of infection and strain on the anastamosis is greater. This too is why radiation was discussed for you... you were borderline. Also this is why your anastamosis was visualized via sigmoidoscopy. Hope all this makes sense. This is the "norm" for a colorectal specialist. If one is not that familiar with colorectal surgery, he/she may provide diversion with an anastamosis higher in the colon.

So, with ALL THIS SAID, this is why I said that the fact that his father was to receive a diverting ostomy, that I suspected he has a rectal lesion. :)

Fondly,
CD

PS Maz... one more thought... if there are multiple lesions, in which a large portion is to be removed, with an anastamosis at the rectal/sigmoid juncture, then they would opt for diversion as well. And, as JD just said... some people do things differently. I can only tell you common practice in the US and what current theory is. From what you have shared, based on current theory in the US... you would be called a "rectal cancer survivor." As you can tell, surgery WAS my passion, and I had the priveledge of knowing some of the Best and witnessing their technique, as well as bouncing around ideology regarding diversion.

AliR: I hope this banter has helped in some way... we all bring our experience to the board, sometimes passionately! Good luck with your Dad

*ATTITUDE IS EVERYTHING*

My mother's colon cancer was in the desending colon above the sigmoid and she had a temp colostomy for 6 months. She was reconnected and has had no problems since then.

Ailr, I know the chances are slim but if you are in Winnipeg my surgeon was R.Silverman at St. Boniface Hospital. He is a colo-rectal surgeon as CancerDad speaks of. I can't say enough good about the guy's work.
(hope I did not break any board rules there)

My mother's colon cancer was in the desending colon above the sigmoid and she had a temp colostomy for 6 months. She was reconnected and has had no problems since then.

Ailr, I know the chances are slim but if you are in Winnipeg my surgeon was R.Silverman at St. Boniface Hospital. He is a colo-rectal surgeon as CancerDad speaks of. I can't say enough good about the guy's work.
(hope I did not break any board rules there)


JD:
I'm glad the surgeon took the "Safe Route" at the time on your Mom. Again, I don't know when she had the surgery, but I can only speak to Common theory 1 1/2 years ago when I was active in the surgical world! Times do change, and technique changes from surgeon to surgeon, patient to patient, and country to country!

And you do make an excellent point.... MAKE SURE IT'S A COLORECTAL SURGEON! And I don't believe there are rules talking specifically about individual physicians. :) I think you are safe!!!

Warmest regards to all,
CancerDad :angel:

CD
Your might be quite right on that all... I dont know. Thanks for the explanation.

luv ya!! LOL

hmmmmm ........ cancerdad........ my mum and husband both had low anterior bowel resections and neither had temp or perm bags. Hah, explain that one away why dont ya !!!! :D :jester: :p

luvya2
ktee

hmmmmm ........ cancerdad........ my mum and husband both had low anterior bowel resections and neither had temp or perm bags. Hah, explain that one away why dont ya !!!! :D :jester: :p

luvya2
ktee

Ktee and Maz, my luvs:

That just proves my point... During an LAR a surgeon can typically use a circular stapler.--- I guess that is what you are saying.-- you proved my point! Duh!! :jester: I'm sorry, just a bad day! You know I ADMIRE and RESPECT and yes, sorry BRITS... LOVE ALL YOU Guys and Gals on the Board. :) I don't know what I would do without you!

HIGHEST PRAISE AND REGARD,
CDAD :angel:

PS AliR, Please don't be scared off by us. We have become one big happy family!

My Mom's surgery was done on an emergency basis (total obstruction) by a general surgeon about 9 years ago. He is one for erring on the side of caution too and therefore that could influence the decision to go with the temp colostomy.

We just got back from a bad news day.

We discovered today (12 days before surgery) that my hubby is going to have a temp ileostomy for 6 weeks - this hadn't been mentioned before. (AGH!)
From reading here it seems like most are 3-6 months - have any of you had one for only 6 weeks?

Lots more bad news but mostly ranting, so I zapped it...

Thanks for being there.

Caffiened:
Sorry to break this to you, but they lie... they will tell you 6 weeks just to break the news, and then 6 weeks will turn into 3-4 months. All depending on how the healing is going. Keep in mind that they are doing this in his best interest... and an ileostomy is not bad once you get the hang of it. If they reverse it earlier, and he were not healed, he would leak out into his abdomen, get a raging infection, and unless discovered, could die as a complication within 8 short hours. That's the reality... So I know he/you/both of you are pissed that there has been a deviation in plan, but expect this. Unfortunately it happens when treating cancer.

I think surgeons need to take a class on how to better tell their patients the truth before surgery though... they don't think we can handle it, so they spoon feed it to us so we can take it in little by little. You are NOT the only one. It happened to me, and countless others I have spoken with.

I don't know... maybe they are right to withhold SOME information, because a lot of stuff is remote in happening, and makes it easier for you/the patient to handle. They should have told you about the probablility of a temporary ileostomy though.

You/he WILL GET THROUGH THIS!

Best of Luck,
CancerDad

I kinda had a feeling about that. (6wks -> months)

We were pondering earlier if it would have been better if we had known all along - probably not. We found out when his nurse came in for prelim stuff and mentioned it. We both said WHAT?!?!? Then she said she had better let us talk to the surgeon and left the room in a big hurry. It was at least 20 minutes before he came in to talk to us - it seemed like hours.

He explained the reasons well and we understand them. (and don't have much choice)

He also gave a few reasons for prefering PCA over an epidural (we were pushing for PCA anyway from what I have read here.) He said an epidural would slow the healing process and increase the chances of blood clots in his legs. (Just in case anyone else is pondering that choice.)

Here's a silly question - the doc said the catheter would be in for ~3 days. How is he supposed to be up doing laps around the nurse's station with a little baggy? (Do I carry that? :) )
CD - I will pass along your tip about removing the catheter once that gets closer. He's trying not to think about it for now - he has had nightmares about that part.

> You/he WILL GET THROUGH THIS!
I sure wish it felt that way here - right now it just seems like too much.

Thanks, again, for your help!

Caffiened, I know Cancerdad and others have always said it is OK to rant....it is a way of releasing some of the stress. So, please rant whenever you like....you never know what help and advice you might get if you explain the problem. At a time like this, we all need support. Don't hold back. We are here for you.

All the best,

Here's a silly question - the doc said the catheter would be in for ~3 days. How is he supposed to be up doing laps around the nurse's station with a little baggy? (Do I carry that? :) )
CD - I will pass along your tip about removing the catheter once that gets closer. He's trying not to think about it for now - he has had nightmares about that part.

> You/he WILL GET THROUGH THIS!
I sure wish it felt that way here - right now it just seems like too much.

Thanks, again, for your help!

Hi again:
Alison is ABSOLUTELY right... PLEASE feel free to vent and to rant... we can help you through much of this.

You didn't mention if he has rectal cancer or colon cancer... or maybe I missed that.. Sorry.

If he is having Rectal Cancer surgery... he will want to have that catheter left in for at least 6 days is what the text books recommend. Otherwise, he COULD run into the same problem I still have, I can't pee right and need to self cath quite a bit. No big deal now, but when they removed the catheter for me, and I couldn't pee, I was DEVASTATED!

I'm assuming you are talking about an earlier post where I say to MAKE CERTAIN they remove all the liquid from the balloon tip, and then TELL them he will slowly pull it out. It hurts, but a heck of a lot less when you do it yourself! And yes, he will learn to get around with it... you attach it to the IV pole. Get him walking as soon as possible... first day post-op. Let them SEE you walking up and down the hall. It will hurt like heck, but in the long run, it will make him feel better. Have him take deep breaths, and hold a pillow to the abdomen when laughing or coughing... which he will want to do frequently (coughing that is!)

I know it is hard to believe what you are going through... In the beginning, it all seems so surreal. And your story of the 20 min. with the waiting is TYPICAL... giving you time to adjust to the news!
As I started saying, I know it's hard to believe, but you both WILL GET THROUGH THIS! Please lean on us for support. You will find it makes a world of difference.

Fondly,
CancerDad

If he is having Rectal Cancer surgery... he will want to have that catheter left in for at least 6 days is what the text books recommend. Otherwise, he COULD run into the same problem I still have, I can't pee right and need to self cath quite a bit. No big deal now, but when they removed the catheter for me, and I couldn't pee, I was DEVASTATED!


What does leaving it in longer do? (I need ammunition - he's going to want it out as soon as he's awake.)


I'm assuming you are talking about an earlier post where I say to MAKE CERTAIN they remove all the liquid from the balloon tip, and then TELL them he will slowly pull it out. It hurts, but a heck of a lot less when you do it yourself! And yes, he will learn to get around with it... you attach it to the IV pole. Get him walking as soon as possible... first day post-op. Let them SEE you walking up and down the hall. It will hurt like heck, but in the long run, it will make him feel better. Have him take deep breaths, and hold a pillow to the abdomen when laughing or coughing... which he will want to do frequently (coughing that is!)


Thanks! I have saved this to print and take along to the hospital.


And your story of the 20 min. with the waiting is TYPICAL... giving you time to adjust to the news!

It worked quite well for them. By the time he came in, I had snuck out into the hall to see what the folder had in it and we were already starting to cope with it. He explained the reasons well, and of course we really have no choice.


As I started saying, I know it's hard to believe, but you both WILL GET THROUGH THIS! Please lean on us for support. You will find it makes a world of difference.


It already has made a difference. I feel better if I know what to expect - hoping I can handle it better. (It does keep me up nights though.)
I can't wait to get back to living happily ever after - I miss it!

Thanks, again and again, for your kind words and support!

Caf:
Leaving the cath in longer allows the bladder to rest... they do SO MUCH manipulation of it during rectal resections, that if you take it out too early, than you can't pee, and then they will only have to put in another one! Let him hear that and see how he responds. Seriously.. the consensus from my medical books and literature is AT LEAST 6 days. I question whether that would have made a difference for me... I demanded it out ASAP and they fought with me, finally coaxing me into leaving it in for a couple days. If they had just explained to me that it was to allow the bladder time to regain tone, it would have made the world of difference for me. (I'm 33 BTW, was 31 at surgery... I don't know how old your hubby is, but I can be pretty ornery, believe me!). It all depends on how much "bruising" or severing of the nerves they do, too. This will depend on how low the tumor is... the lower, unfortunately, the greater the amount of nerve bundles, and the more of a chance bruising will occur and possibly cause problems with urination (Not to mention below the belt issues later... I hope they already broke that to him!) Women are better, but for men, it is STRONGLY recommended cath stays in for at least the 6 days.

I can't wait to "living happily ever after" either!!! You have to understand, as hard as it is, that this has BIG implications on your lives, and will likely change it no matter what you do. Know that it DOES get better, though. You'll both have up and down days. My advice... take it day by day, and pray/hope for the best. It's all ANY of us can do in these circumstances. And make sure you take care of yourself too... if you are not seeing a psychiatrist/therapist... you may want to consider it... my wife does. Or, talk to your General Practictioner... don't hesitate to ask for help... a sleep aid, an anti-anxiety pill... RECTAL CANCER REALLY DOES TAKE A TOLL ON THE WHOLE FAMILY. Your husband should get meds and learn that it's ok to take them and accept help when needed AND offered.

Good Luck. Please write back and let us know if you have more questions. Also, you haven't shared anymore about tumor placement, etc. If your comfortable, it may help, so we can better help you.

Fondly,
CancerDad

Leaving the cath in longer allows the bladder to rest...they do SO MUCH manipulation of it during rectal resections, that if you take it out too early, than you can't pee, and then they will only have to put in another one! Let him hear that and see how he responds.

Thanks for the info - saved for printing and taking to the hospital.
That should make him think twice about it.

I thought I put this in another thread, but it was late at night.
Before radiation, it was 5cm up. I haven't heard an update since radiation, but we do know that it shrunk. (BM's went from pencil width to almost normal) He's 64. We don't know what size (height?) the tumor is.

>below the belt - he did mention that, with 18% chance.
I hope that doesn't happen. (I'm sure everyone has the same thought!)

No therapists yet. We're really doing ok, considering. Will keep it in mind in case that changes. I have mandatory 4-legged critter therapy twice a day. :) He is spoiled rotten by adoring wife.

> Your husband should get meds and learn that it's ok to take them and accept help when needed AND offered.
He figured that out when the radiation started affecting him. Percoset is our friend.
I have trouble accepting help and usually try to do everything myself. I'm learning too - dinner is being brought over for us tonight by friends so we can eat well and relax and chat.

Thanks, again and again!

Hi:
Thanks for the info... 5cm IS low... the bottom line is the surgeon NEEDS to get good margins, meaning enough tissue around the tumor to make sure he got all the cancer. I'm sure the radiation has given the surgeon even more room to work, so he made it easier. So, whatever the complications, trust me... you and he WILL get through.

18% (LOL) I HOPE he doesn't have this difficulty. They told me because I was young I wouldn't.. and if I did, because I'm young, it would recover quickly. Well, I have taken all the meds, done the intra-urethral suppositories and injections. And...???!!! This is NOT to say that he will have this too. It REALLY varies case by case. I pray he will have better results than me. I was told the drugs, no question, would work IF I had a problem, and just to expect retrograde ejaculation (instead of urethra out, it goes urethra IN to the bladder). There is only one way to see what happens, and that is to see what happens. The tumor MUST come out to save his life. That's the reality. So whatever else, as I say, you WILL GET THROUGH!

As far as the therapist goes... I know that he at 64 is part of the generation where people don't necessarilly believe in talking with a therapist, or taking an anti-depressant or anti-anxiety. I hope you can convince him, if the time comes, to get the help... THERE IS NO SHAME. Please make sure he knows that. This is a Heck of a lot of stuff to go through, and I know WE men can be stubborn!

I know we have no choice. I want my sweetie here with me more than anything. Everything else, we'll get through, somehow. (I'm trying to convince myself...)

We have an ex-nurse handy who adores him that he'll listen to on medical stuff.
So far, he seems to be doing pretty ok being spoiled rotten.
I can't think of anything that would get him to go to a therapist...maybe it's a generation thing...I can't imagine going to one either.

18% LOL - are you saying the 18% is way off?

I hope something works out for you soon and things start improving.

Thanks, again!

I agree with Cancerdad.....the most important thing is that the tumour comes out....any other possible problems, and there hopefully will be none, do not matter at this point. I can relate to how you are feeling....I was where you are two years ago when my husband was dx.Stage 111C rectal cancer. He had surgery first, then chemo and radiotherapy. He did have urinary problems but his prostate was already enlarged and that probably added to the mix. But he is fine now...he is nearly 67. It is a scary time and I guess therapy would be good. But I work with some therapists and they have more problems than I do!!! If you don't want therapy, I think you just have to make sure you look after yourself. He will get spoiled rotten..by you and everybody else, but you need nurturing too. I kept going just getting everything done....there was so much stuff to look after. I had my moments but it all seemed like a bad dream and things happened so fast that we really did not have time to take it all in. Each time we were told something like "you will have a permanent colostomy" we just nodded our heads like we were being offered a cup of tea! I guess we were numb but we smiled and made jokes with people like we had no problem in the world. Unbelievable now I look back on it all. I do feel that although I always loved him (we had been married at that time for almost 37 years) I never knew what love really was until he became ill. He became my only focus, all that mattered....and still is really. I don't mean I do not have a life of my own but it revolves around him. I feel I nearly lost him and now, at this blessed moment in time, he is still here with me, against almost all odds. He really became quite ill just after surgery and after several weeks of chemo/radiotherapy and our insurance nurse reviewer said recently that he was a miracle.

I am rambling but hope that sharing my feelings can help you get through this time. It will pass though, presently, you probably feel it never will. It is a nightmare. Look after yourself and make sure you eat well and get enough rest.

Take care,

Caf:
I am saying the data is much higher than 18%.

I think Alison makes a great point-- do what's best for you to make sure your needs are met too. A lot of times YOU the caregiver gets overlooked... DON'T let that happen.

Best of luck,
CancerDad

I am taking care of him and my parents are taking care of me. They brought dinner over tonight and stayed to chat a while. (comfort food from mom - YUM!)
SIL also comes over with yoga relaxation massages...aaahhh...

While laying in bed thinking about all the Dr said, I remembered that when the nurse asked if we were ok with the ileostomy (to which we both replied HUNH?????), she also said something about a J-Pouch. (it's all a blur.)

I found the J-Pouch info site. Does this mean they're going to remove his entire colon? From reading there it looks like it may take a year (from reversal) before he can enjoy corn on the cob again. :(

I looked on the 'net for ostomy pouches and found a confusing, expensive selection to choose from. Any recommendations (we're in the US) on brands, types, or discount stores? Does insurance usually cover the supplies?

I need to go back and read through the messages again - when I went through them before, I wasn't paying attention to the ostomy info.

I am taking care of him and my parents are taking care of me. They brought dinner over tonight and stayed to chat a while. (comfort food from mom - YUM!)
SIL also comes over with yoga relaxation massages...aaahhh...

While laying in bed thinking about all the Dr said, I remembered that when the nurse asked if we were ok with the ileostomy (to which we both replied HUNH?????), she also said something about a J-Pouch. (it's all a blur.)

I found the J-Pouch info site. Does this mean they're going to remove his entire colon? From reading there it looks like it may take a year (from reversal) before he can enjoy corn on the cob again. :(

I looked on the 'net for ostomy pouches and found a confusing, expensive selection to choose from. Any recommendations (we're in the US) on brands, types, or discount stores? Does insurance usually cover the supplies?

I need to go back and read through the messages again - when I went through them before, I wasn't paying attention to the ostomy info.

Hi:
I tried several, and found that the Assura one piece by Coloplast was the best FOR ME. Has velcro, and is easy to empty. Remember, in the hospital, they will give him the cheapest bag... they set me up with some two piece that leaked-- had a rigid frame that didn't adjust to the skin... I much preferred the one I stated... He can actually move around with it, with out leaks.

As far as the j-pouch... I don't know why they are offering in place of a bag?? And why would he have a J-pouch-- that's extra storage... his tumor is 5cm up which means that the amount they will take out should leave plent of colon to become his "new rectum." Is he having a colorectal specialist do his surgery?

caffiened, my doctor gave me the book 100 Questions and Answers about Colorectal Cancer by David S. Bub, Susannah Rose, and W. Douglas Wong, and I found it really helped explain a lot of questions in a very clear way-- it talks about temporary illiostomies, j-pouches, why they are often done together, staging and lots of other things. I just thought it might be worth looking into, as I am finding it very helpful.

Hi:
I tried several, and found that the Assura one piece by Coloplast was the best FOR ME. Has velcro, and is easy to empty. Remember, in the hospital, they will give him the cheapest bag... they set me up with some two piece that leaked-- had a rigid frame that didn't adjust to the skin... I much preferred the one I stated... He can actually move around with it, with out leaks.

As far as the j-pouch... I don't know why they are offering in place of a bag?? And why would he have a J-pouch-- that's extra storage... his tumor is 5cm up which means that the amount they will take out should leave plent of colon to become his "new rectum." Is he having a colorectal specialist do his surgery?

Thanks for the recommendation. I've seen that recommended elsewhere too. Should I go ahead and order some? Leaking will make this so much MORE worse. Did you use the covers, shields, etc? Does insurance cover any of the supplies?

I've read that once you get the bag figured out, you only need to change it every 3 days. (Is that right?) Do you empty it between changings?

J-pouch - the nurse mentioned it (before she ran out of the room), the dr never did. I don't think it was instead of the bag. My husband asked about alternatives to the bag and was told 90% chance of permanent bag if they tried. I'd kinda like to call and ask, but my knowing doesn't really matter.

The surgeon is a colo-rectal specialist. He came highly recommended by the very nice dr who did the colonoscopy. She said if she had a tumor, she would go to this dr. She has called several times to check on us, even though we aren't involved with her at all any more. (No other medical folks have ever done that.)

They said he isn't allowed to have anything, even water after midnight before the surgery. So when should he start the half-lytely stuff? Is there any chance of him getting dehydrated?

Thanks, again, for all your help!

caffiened, my doctor gave me the book 100 Questions and Answers about Colorectal Cancer by David S. Bub, Susannah Rose, and W. Douglas Wong, and I found it really helped explain a lot of questions in a very clear way-- it talks about temporary illiostomies, j-pouches, why they are often done together, staging and lots of other things. I just thought it might be worth looking into, as I am finding it very helpful.
Thanks! I'm ordering it now.

I found The Chemotherapy & Radiation Therapy Survival Guide to be very helpful with chemo & rad.

Hi Caf:
Sorry, I haven't been to the computer in a few days.

I would change my bags every 2-3 days. You have to empty the bag 6-8 times a day, maybe less, maybe more if he has diarrhea. Your insurance will pay for the supplies, and will set you up in the hospital. You need a prescription (supposedly) for the supplies, and they can be costly. I was sent home from the hospital with supplies, and then switched once I was home. You call the back of you number on your insurance card, and they will tell you where to get products. You can then call the place and get a catalog. I used paste, and definitely stomahesive powder if he gets ANY irritation. Remember, in the beginning he will produce VERY acidic output until his bowels get used to the change.

Why are they recommending a J-Pouch? This is a procedure that can be done when they remove A LOT of colon, and they need to create a bigger area as a place to hold stool... like the rectum did for him. But, ask them... they are planning on a permenant ileostomy? Why? Do they suspect they need to do a procto-colectomy... total removal of his colon... if so, WHY? Put them on the spot and ask ANY question you have. The fact that you had the personal recommendation, and that he is a colorectal specialist is good. You don't want a general surgeon who "dabbles" in colon repair!

A temp bag is perfectly normal... and I got used to mine pretty quickly. If he needs it permanently, then he needs it. I really thought it was EASY when I got used to it. But I think you have EVERY right to know EXACTLY what and WHY they are doing things. They should be willing to sit down and not pressure you, while you ask and ask until you understand EXACTLY what will happen and what to expect.

Follow the prep the way the colorectal surgeon wants him to prep... he will be put on an IV with fluids as soon as he gets to the hospital. You have to keep in mind the positions they put him in during the procedure... you don't want him aspirating fluids.

It will be FINE, but DON'T BE AFRAID to ask ANYTHING.... or let them make you feel stupid for doing it.

Fondly,
CancerDad

Hi Caf:
Why are they recommending a J-Pouch? This is a procedure that can be done when they remove A LOT of colon, and they need to create a bigger area as a place to hold stool... like the rectum did for him. But, ask them... they are planning on a permenant ileostomy? Why? Do they suspect they need to do a procto-colectomy... total removal of his colon... if so, WHY?

The ileostomy is SUPPOSED to be temporary. The doc assured us of that and said that if he didn't get the temp ileostomy, he'd almost certainly end up with a permanent colostomy. I'll try to ask on the rest - I need to find out when he should start the half-lytely stuff anyway.

Thanks for the bag info. I'll be talking to our advocate at the insurance co today and will ask.

Most days, I manage to keep up the illusion that everything is ok...it's not working today.

Dear Caff

Have only just wound through your posts and my ears/eyes pricked up when I saw your comments about the catheter issue. My husband had his bowel resection over 2 years ago now and the tumor had stuck itself onto his bladder so it had to be scraped off. As CDad said, the bladder takes a lot of stick during pelvic ops and for this reason he had to have his cath in for nearly 10 days (time dims the memory but we think thats about right). Anyhow, he got about ok-ish but after a week they took the collecting bag off and stuck a tap on the end so there was a short tube protruding with the tap. This was much easier for him to get about but he had to remember to open the tap regularly to empty the bladder. Afterwards it took a while for his flow to get regular but is ok now.

Hope this is of use. Good luck
ktee (wife to stage 4 survivor)

Just wanted to thank everyone for their replies. Unfortunately my dad passed away last Fri. the 26th. His surgery went very well, he did not need even a temp. bag and they were hopeful that the cancer was in an early enough stage that he would require no further treatment. We do not yet know what happened but the nurses had checked on him at midnight and he was fine and when they checked again at 1:00am he was gone. They are thinking either a breathing prob. or a blood clot. Again thanks for your support.

AliR:
I am VERY SORRY to hear of you father. Unfortunately blood clots often form and travel after surgery to the pulmonary artery. This MAY have been what happened and I don't know whether you take heart in knowing, or if it is not a pressing concern. I am certain his passing was peaceful. Know that your post sparked some good conversation, despite the outcome. I know how painful it is to lose someone close to you, and again, I AM VERY SORRY FOR YOUR LOSS.

If we can do anything, please do not hesitate to post to us. I wish you and your family the best under these difficult circumstances.

Regards,
CancerDad

AliR...I am so sorry to hear about your Dad. It sounds as if he passed very peacefully but it is still a very sad time for you.

Do take care of yourself and know we are all thinking about you.

AliR, my deepest sympathy. No matter how someone dies, it is painful for the survivors. Take care of yourself and don't push yourself too hard right now. The grief process can take a long time. You never forget, but it becomes easier as time goes on.

AliR sorry to hear of your DAd.. Thoughts are with you.
Take care of you.
Maz