Cut off distance from verge for bag

darcher

  Ok, this is the one thing that has me petrified. I'm sure not just me.  A lot of people probably wonder the same thing yet I haven't seen the question put out there.  As if cancer isn't bad enough but to anyone who doesn't end up with a permanent bag.  The distance of the tumour to the anus is probably the most decisive factor.  How far was yours?

 I've asked the doctors already and they said I don't have to worry about that but can that answer be counted on as completely truthful?  I tend to doubt it given how this specific thing is thought of in the outside world. The distance for me is anywhere from 10 to 15 cm from the anal verge.  The  ultrasound  procedure said 10-13 and the July colonscopy said 13-15.  Maybe it depended on how I was laying on the exam bed as to how far it appeared to be,  Originally the tumour was 3 cm long and about 1/2 cm thick and about 2.3 cm wide if that makes any difference. 

 According to the pet scan last week it's less than half it's original size and not showing signs of life. It said there was no cancer or other odd activity and they went from mid thigh all the way to the brain. The surgeon said there was about a 10-20% chance I'd have a temp bag if the area wasn't healed up enough which I guess is tolerable.  Maybe I'm worrying about something I shouldn't but I just can't help it.  All aspects of this have screwed up my life to no end and I'd like to know some more about this more or less final result.  If I'm screwed, well, then I guess I'm going to have to get used to the idea.     

lp1964

Dear Friend,

My anal cancer penetrated the sphincter muscle so I had no choice but remove the entire rectum and anus even a little bit of my tail bone.

I don't know how far the cancer has to be to avoid a colostomy or ileostomy. Doesn't look like you have to worry about permanent osteomy. I do have permanent colostomy which is inconvenient , but doesn't keep me back from doing anything I want. I work full time, very active and enjoy very active dating life. I have major dietary limitations though. No raw veggies and fruits, nothing fiberous, spices especially black pepper give me royal cramps and gas that would fill a Zeppelin lol. If I avoid these things I'm quiet comfortable.

Wish you all the best.

Laz

airborne72

Well, I am probably not the person you want to respond to your question because of my outcome, but hear me out.  Just like you the "bag" was the nemisis for me.  Paralysis or even death from the surgery never caused a single concern - it was the bag.

During all post surgery consults my surgeon said that my tumor was high and that he could get it out without the need for an ostemy.  Consequently. I put it out of my mind.  THEN while I was laying on the bed getting prepped for surgery he walked in and told me that there was a possibility of the need to perform an open procedure and if he could not get a good closure on my rectum (tight seal) then I would need an ileostomy.  Thanks for sharing at this moment, Doc.

When I awoke from surgery (in debilating pain for a good while) my first question was about the bag.  My wife did not want to answer me and I had to ask twice.  The answer did not affect me at the moment, as I had greater issues with pain control.  It wasn't until I got home that it hit me.  After 48 hours of self-induced pity I regained control of myself and snapped out of that weak spot.  The members on this list are responsible for my acceptance of this new normal and for that I am so grateful.

Why did I need an ileostomy?  Two reasons.  My surgeon said that I had lots of scar tissue which complicated the effort.  This scar tissue resulted from a previous radical prostectomy and a bilateral inguinal hernia repair.  And, the radiation had reduced the quality of the rectal tissue.  So all those previous activities that were beneficial to me were also detrimental to me. 

My ostomy is temporary and for that I am thankful.  But if it weren't or if conditions change and it becomes permanent then I will deal with it.  I am fully convinced that you will do the same.

Hang tough my friend as this too shall pass.  For me it is not passing fast enough.

Jim

Mikenh

My perspective is that I want

My perspective is that I want to survive. The rest of it is bargaining talk. I'm going to get a bag one way or the other. Whether it is permanent or temporary is not up to me. Doctor said there's a 10% chance of a permanent but this is cancer and stuff happens.

lhduffer

Was there too

I too had the same concerns as you when starting this journey.  As Mikenh said, as the journey continued my main concern was survival and dealing with come what may after the fact. 

My original tumor was 5 cm and was 5-8 cm from the anal verge, which is very low and I was originally told I would have a permanent bag.  My surgeon told me that a permanent colostomy or a temporary ileostomy would be decided during surgery and I was marked for both at my preop meeting with the stoma nurse.  I awoke to a temporary ileostomy, and while there is a big learning curve, it became "normal".  We are all much more resilient than we think.  I have since had my reversal and that has it challenges as well, but I am alive and living life.

Wishing you all the best.

 

darcher

Thanks all.  I'm going in

Thanks all.  I'm going in today to do pre-op and I guess it's something they may bring up, or maybe I have to.  If they don't say anything I'll say something and guage it from there.  Sometimes it's not what's said but how it's said that exposes the truth.  Pet scan was a good example.  First time back in July the techs were silent and the second time last week cheerful.  No words needed said.  This is one of those things even we tend to stay silent on until it's unavoidable.  Based on what I've been told, saw, and read about it's kind of iffy and mostly depends on what the surgeon sees.  The tests only show so much and for all I know there could be anything from nothing but a dead piece of tissue to mets going everywhere. I've never had an operation of any kind so this is the first and what a doosy it is. I guess once I wake up I'll get the surprise or lack of. Praying for boring.  

Tunadog

When I had my LAR...

When I had my LAR surgery my surgeon and I talked about the possibility of a temporary bag vs colostomy. He indicated if he could get clear margins he would do the ileostomy.

 I went in for the three hour surgery which turned into six hours. They found cancer had spread to my abdominal wall.

 I woke up with a colostomy. I'm pretty used to it, no problems.

Ask your surgeon what the plan is.

Good Luck

Mikenh

darcher said:

Thanks all.  I'm going in

Thanks all.  I'm going in today to do pre-op and I guess it's something they may bring up, or maybe I have to.  If they don't say anything I'll say something and guage it from there.  Sometimes it's not what's said but how it's said that exposes the truth.  Pet scan was a good example.  First time back in July the techs were silent and the second time last week cheerful.  No words needed said.  This is one of those things even we tend to stay silent on until it's unavoidable.  Based on what I've been told, saw, and read about it's kind of iffy and mostly depends on what the surgeon sees.  The tests only show so much and for all I know there could be anything from nothing but a dead piece of tissue to mets going everywhere. I've never had an operation of any kind so this is the first and what a doosy it is. I guess once I wake up I'll get the surprise or lack of. Praying for boring.  

I'm in the same situation.

I'm in the same situation. Perhaps you could do a summary of the pre-op. I don't think that I've read a description of one yet. Mine's on Tuesday. BTW, I'm supposed to go to the Surgeon's office to pick up a bowel prep kit that contains:

4 Neomycin

4 Erythromycin

2 Dulcolax

1 Bottle of Miralax (14 doses)

1 Fleet Enema

And I have directions on how to take them - so it's like a colonoscopy prep.

danker

Tumor

My tumor was 5 cm about 9 cm from anal verge.  Resection cut out fom 5 to 20 cm from verge, thus requiring temporary ileostomy.  Reversal 6 weeks later resulted in fistula at ostomy cite.  Bag required additional 6 weeks.  Fistula healed itself. Lucky me!!! Been NED(no evedence of disease)last 7 years, confirmed by two different  colonoscopies.  It was a bumpy road, but now living normal life.  Good luck to you.

BRHMichigan

Permanent

My 10cm tumor was 4cm from verge.  A colostomy brought me such fear.  I woke upwith one & it was almost a relief.  I have been dealing with constipation for almost 2 years, and frequent bathroom trips.  No way to live.  I was thrilled to wake up alive and with a fighting chance.  

darcher

Thanks again.  From the

Thanks again.  From the replies I've learned something here.  My projected surgery time is the same, 3 hours.  My tumor is a tad further away and slightly smaller so that gives me hope.  Thanks Danke,Ihduffer, BRHMichigan & Tunadog for specifics.

 Going to the pre-op they gave me a bag full of items.  Some gatorade sports drink, soap, and this drink called Impact. The impact I have to start drinking 6 days in advance. gatorade the night befor and in the morning. The soap is to use the night before and again in the morning.  I think this bag of "goodies" is something new.  She said they've seen improved results when used.  The soap I understand. The impact juice and gatorade?  The quesiton I have is, who decided to drink gatorade sports drink before their resection surgery?  The result of a study sponsored by gatoradeI'm sure.   

 I've also got the metronidazole and Neomycin tablets and of course a gallon of Gailyte to flush myself out the day before same as was given for the colonoscopy.  That was prescribed a few weeks back. They did the usual weigh in, blood pressure, heart rate,  Ox saturation, and also an EKG. All went well.

  The main nurse who I spoke to probably isn't aware of specific treatment for this because she asked what was done already and I described the chemo/radiation and then she said it must not have been too bad because I still had hair on my head.  Perhaps she's used to dealing with breast cancer patients.  I didn't bother bringing up the bag issue since it was obvious this was a generic pre-op intro and they wouldn't have been able to provide any good info.

I did the blood draw a few days back for a research study I volunteered for and at the same time they took the blood for this so I have the results for that too.  The results look normal per their charts.  Considering what I'm reading here, distances, surgery time,  there is a good chance the casual approach the surgeon took describing the proceedure a few weeks ago may very well be justified.    

 The main nurse I spoke to today who schooled me in what to take and when said I didn't look sick at all.  I don't think a lot of us do until it gets real ugly.  Not to say I'm ship shape. I'm still wearing a "brief" just in case and have my pee bottles at the ready when on the road although the need for either hasn't come about in a few days. It's become so common my wife is already used to it, lol.  I can't imagine how a woman would handle that.   I'm still constipated and have elevated hissing in my ear. My sense of smell is still too strong which is nothing more than weird. So no, I'm not 100% but I can tolerate this.  In all it took about an hour from start to finish.

 

Mikenh

Gatorade is often suggested

Gatorade is often suggested with Miralax as it provides calories (sugar) and electrolytes which your nervous system needs and which you may not get enough of because you're not eating anything solid.

Your pre-op procedure is quite different from mine - at least what I know of it so far.