Just Diagnosed; Questions about laxatives, diet, and narcotics

carrieh

I just found out that I have colon cancer. The tumor is almost completely blocking my colon and the doctors have me taking 4 laxatives per day, want me if possible to avoid narcotics, and say I should eat a low residue diet.

The problems I'm having;
All of the laxatives make the stomach cramping worse than it already is. If I don't take them I can't go at all. A lot of the time the pain is moderate but at times severe. I get really gassy which hurts a lot because it's hard to pass it.

If I don't take any pain pills I can barely walk. I know I have to go to the bathroom but I also have two children to take care of. Isn't there a happy medium. Something that will take the edge off of the pain but not constipate me to the point of ending up in the hospital again?

Low residue diet seems pretty unhealthy to me. It's supposed to be easier to digest? It's less fruits and veggies/ less fiber...I think? How can canned fruit and junk food be better for me? I really just need some advice about living day to day in a comfortable manner if at all possible. This is all new to me.

If anyone has the time to tell me a little bit about resectioning surgery..I would really appreciate it as well. I want to hear about it from people who have actually gone through it. I don't want to feel so frightened.

Thank you for any advice
Carrie

steved

Welcome
Sorry to hear of your problems but believe me that you find solutions and ways a forward but do try and be patient. In this inital phase it is very overwhelming and you are desparate for answers and solutions quickly- however finding ways of managing your symptoms may be a bit of trial and error before you find what works for you. The changes they are suggesting for your diet are short term till the problem is treated so whilst a low residue diet may not feel healthy in the short term it won't hurt and may help the bowel symptoms. It can be healthy too- pasta, white rice, potatoes with skins off are all good healthy low residue options. Pain killers may also be trial and error to find one that suits without side effects- options outside the opiates which all constipate to some degree are basic paracetamol (don't under estimate its value often in combination with others) and antiinflammatories eg diclofenac.

It is hard to advise about the surgical procedure you are facing without knowing more about your diagnosis- where in the bowel is the cancer, is there any sign of spread? REctal cancers are treate with differnt operations than ones elsewhere and also often have chemoradiotherapy before operating. Tell us a bit more if you can and I am sure there are people here who can give some very accurate and empathic information.

Give yourself time to adjust to the diagnosis. It is a long journey ahead and one of teh biggest thing that will help is getting your head around this huge change in your life.

steve

janie1

steved said:

Welcome
Sorry to hear of your problems but believe me that you find solutions and ways a forward but do try and be patient. In this inital phase it is very overwhelming and you are desparate for answers and solutions quickly- however finding ways of managing your symptoms may be a bit of trial and error before you find what works for you. The changes they are suggesting for your diet are short term till the problem is treated so whilst a low residue diet may not feel healthy in the short term it won't hurt and may help the bowel symptoms. It can be healthy too- pasta, white rice, potatoes with skins off are all good healthy low residue options. Pain killers may also be trial and error to find one that suits without side effects- options outside the opiates which all constipate to some degree are basic paracetamol (don't under estimate its value often in combination with others) and antiinflammatories eg diclofenac.

It is hard to advise about the surgical procedure you are facing without knowing more about your diagnosis- where in the bowel is the cancer, is there any sign of spread? REctal cancers are treate with differnt operations than ones elsewhere and also often have chemoradiotherapy before operating. Tell us a bit more if you can and I am sure there are people here who can give some very accurate and empathic information.

Give yourself time to adjust to the diagnosis. It is a long journey ahead and one of teh biggest thing that will help is getting your head around this huge change in your life.

steve

Hi Carrie
I was completely blocked in the colon. I had gone to the ER because I was late on a BM, vomited, and bowel sounds were very loud. I knew already what the diagnosis would be, even though i was still hoping for anything else...
Like gall stones or something.

Anyway, this was an emergency situation. They put in a Naso-Gastric tube...tube through nose to stomach to suck out the stomach contents since there was a blockage. That was left in for 3 days until surgery to remove part of the colon with the blockage could be arranged. I couldnt wait until surgery day came.

Anyway, what are your doctors saying??? Need more info. With you being in that much pain, sounds like surgery should be happening for you sooner rather than later.
Do you live in the U.S., small town? Big town/city?

John23

Carrie -

Sorry to learn of your diagnosis......

I too had a total blockage due to a major tumor. I had a
resection back in 2006 along with the placement of an Ileostomy.

Narcotics slow your system down, and you do not need to
slow down what has already stopped. You do need to make
the passing of food easier, and the laxatives may be the answer
for the immediate time. Any fiber should be totally avoided
for now, and until after surgery, at the very least.

Don't worry about the surgery. Do make sure you have the
most qualified colorectal surgeon; one with a lot of experience!

Regardless of the surgeon's suggestion regarding the need
for an ostomy (colostomy or Ileostomy), you do want to
make absolutely sure that prior to surgery, that time has been
taken to locate the absolutely perfect spot for the ostomy!

Usually a stoma (the section of intestine that will exit your body)
is placed about 4" to the side of your navel, and about 4" below
your waistline. The "4x4 rule" usually will be the best spot,
but the way you normally wear your clothes might make a difference
to you.

A "Wound, Ostomy and Continence Nurse (WOCN)" should be
assigned by the surgeon, to help locate the very best spot for
an ostomy. There is nothing to be afraid of or fear, of having
an ostomy! You can learn a bit more here: UOAA Forum

Whatever you feel you know about "fiber" is no longer valid
once you have a colon obstruction or an ostomy. Fiber in the
diet is akin to a bottle scrub brush in your sink; it does the
same job in your intestine. You don't need "scrubbing", you
need to have the tumor removed. Irritating the tumor is not
a very good idea, so eat what's digested easier; fiber does
not digest, it stays as undigested as when you eat it, as it
does coming out (if it does come out).

So Carrie, relax and make preparations for surgery and the
time it's going to take to recoup from surgery.

Some patients recoup quickly, and are back on their feet
within weeks! Then of course, there are those like me...
I had some complications and remained in ICU for over 4 weeks,
and in recovery for a bit over a week. I remained semi-bedridden
for over a month, and it took almost a year to recover fully.

So look forward to a quick recovery, but please don't be
disappointed if it takes a whole lot longer. You'll be alive,
and will likely remain alive to see your kids through college!

Any questions about an ostomy, just ask here or at the UOAA.

You may not require one, but if you do, at least you'll be prepared.

Stay well! Better days are coming!

John

smokeyjoe

John23 said:

Carrie -

Sorry to learn of your diagnosis......

I too had a total blockage due to a major tumor. I had a
resection back in 2006 along with the placement of an Ileostomy.

Narcotics slow your system down, and you do not need to
slow down what has already stopped. You do need to make
the passing of food easier, and the laxatives may be the answer
for the immediate time. Any fiber should be totally avoided
for now, and until after surgery, at the very least.

Don't worry about the surgery. Do make sure you have the
most qualified colorectal surgeon; one with a lot of experience!

Regardless of the surgeon's suggestion regarding the need
for an ostomy (colostomy or Ileostomy), you do want to
make absolutely sure that prior to surgery, that time has been
taken to locate the absolutely perfect spot for the ostomy!

Usually a stoma (the section of intestine that will exit your body)
is placed about 4" to the side of your navel, and about 4" below
your waistline. The "4x4 rule" usually will be the best spot,
but the way you normally wear your clothes might make a difference
to you.

A "Wound, Ostomy and Continence Nurse (WOCN)" should be
assigned by the surgeon, to help locate the very best spot for
an ostomy. There is nothing to be afraid of or fear, of having
an ostomy! You can learn a bit more here: UOAA Forum

Whatever you feel you know about "fiber" is no longer valid
once you have a colon obstruction or an ostomy. Fiber in the
diet is akin to a bottle scrub brush in your sink; it does the
same job in your intestine. You don't need "scrubbing", you
need to have the tumor removed. Irritating the tumor is not
a very good idea, so eat what's digested easier; fiber does
not digest, it stays as undigested as when you eat it, as it
does coming out (if it does come out).

So Carrie, relax and make preparations for surgery and the
time it's going to take to recoup from surgery.

Some patients recoup quickly, and are back on their feet
within weeks! Then of course, there are those like me...
I had some complications and remained in ICU for over 4 weeks,
and in recovery for a bit over a week. I remained semi-bedridden
for over a month, and it took almost a year to recover fully.

So look forward to a quick recovery, but please don't be
disappointed if it takes a whole lot longer. You'll be alive,
and will likely remain alive to see your kids through college!

Any questions about an ostomy, just ask here or at the UOAA.

You may not require one, but if you do, at least you'll be prepared.

Stay well! Better days are coming!

John

I too had a complete
I too had a complete blockage. Ended up in hospital with two blood clots in my lungs, so surgery had to be held off for a month while I was on blood thinners. Like the others I couldn't wait till I had the surgery. I had a nasal gastric tub too to suck out the contents and relieve the pressure. I think if you take narcotics it will slow your stomach down more, and I wouldn't think you'd want that. What are the doctors saying with regard to when surgery is planned?? Where is your tumor?

carrieh

smokeyjoe said:

I too had a complete
I too had a complete blockage. Ended up in hospital with two blood clots in my lungs, so surgery had to be held off for a month while I was on blood thinners. Like the others I couldn't wait till I had the surgery. I had a nasal gastric tub too to suck out the contents and relieve the pressure. I think if you take narcotics it will slow your stomach down more, and I wouldn't think you'd want that. What are the doctors saying with regard to when surgery is planned?? Where is your tumor?

Thank You So Much
Thank you so very much to everyone who responded...at this point it feels good just to know I'm not alone. I've never been so afraid of anything in my life. It helps to know what to expect...just to know someone else has felt this way.

I don't know a lot yet about my condition. The tumor is, I believe..located just after the first bend in the colon...the doctor couldn't even get the colonoscope around it to see if there were more. It's a adenocarcinoma..moderately differential...(I don't know what the moderately differintial part means-I didn't understand what I read online..and I like to know everything).

I see a colorectal surgeon in springfield Missouri-Mercy Saint Johns Hospital on Monday. I live in a small town in Arkansas and don't want to be treated here. The doctors also said surgery soon and if needed other treatments after. It's a big blockage.

When you have a resection, do they sew it back together while you are in surgery or do it later...I know sometimes not at all. I don't even care or feel embarrassed about that though...(having a stoma)I just want to live and be here with my babies. I don't even know yet what stage my cancer is..I'm really freaked out about that part. I'm so scared it will be 4 and everything says a 5% survival rate. That's horrible...to be numbered like some lab rat..I have the feeling I'm gonna hate hospitals.

Anyway, I know I'm rambling. I just don't know who else to talk to or who will understand. I feel so overwhelmed right now. You are all so kind and brave..thank you for any and all advice/kind words.

Carrie

Lovekitties

carrieh said:

Thank You So Much
Thank you so very much to everyone who responded...at this point it feels good just to know I'm not alone. I've never been so afraid of anything in my life. It helps to know what to expect...just to know someone else has felt this way.

I don't know a lot yet about my condition. The tumor is, I believe..located just after the first bend in the colon...the doctor couldn't even get the colonoscope around it to see if there were more. It's a adenocarcinoma..moderately differential...(I don't know what the moderately differintial part means-I didn't understand what I read online..and I like to know everything).

I see a colorectal surgeon in springfield Missouri-Mercy Saint Johns Hospital on Monday. I live in a small town in Arkansas and don't want to be treated here. The doctors also said surgery soon and if needed other treatments after. It's a big blockage.

When you have a resection, do they sew it back together while you are in surgery or do it later...I know sometimes not at all. I don't even care or feel embarrassed about that though...(having a stoma)I just want to live and be here with my babies. I don't even know yet what stage my cancer is..I'm really freaked out about that part. I'm so scared it will be 4 and everything says a 5% survival rate. That's horrible...to be numbered like some lab rat..I have the feeling I'm gonna hate hospitals.

Anyway, I know I'm rambling. I just don't know who else to talk to or who will understand. I feel so overwhelmed right now. You are all so kind and brave..thank you for any and all advice/kind words.

Carrie

Dear Carrie
I would ask that you stop looking at the stats, as most are from studies years ago, and there have been improvements in the meantime. Besides, no one knows which side of the stats they will be on...just might be the good side!

When you see the colorectal surgeon he/she will give you some more information to work with. If a perm or temp stoma is in your future be sure to get referral to the Ostomy nurse. That person will help to insure that you are marked in the best possible place for placement of the stoma. I am glad to hear you are not afraid of having one. I often think some folks opt to delay or have no surgery out of fear of an ostomy.

As you and your medical team get a plan in place be sure to let us know and ask any questions you may have. Some folks have had a temp ostomy for a while and then go back for the reconnect. Some like myself end up with it being perm.

Being overwhelmed is normal, but as you get a plan in place you will feel some better. Please let us know how your doc appointment goes on Monday.

Best wishes,

Marie who loves kitties

John23

carrieh said:

Thank You So Much
Thank you so very much to everyone who responded...at this point it feels good just to know I'm not alone. I've never been so afraid of anything in my life. It helps to know what to expect...just to know someone else has felt this way.

I don't know a lot yet about my condition. The tumor is, I believe..located just after the first bend in the colon...the doctor couldn't even get the colonoscope around it to see if there were more. It's a adenocarcinoma..moderately differential...(I don't know what the moderately differintial part means-I didn't understand what I read online..and I like to know everything).

I see a colorectal surgeon in springfield Missouri-Mercy Saint Johns Hospital on Monday. I live in a small town in Arkansas and don't want to be treated here. The doctors also said surgery soon and if needed other treatments after. It's a big blockage.

When you have a resection, do they sew it back together while you are in surgery or do it later...I know sometimes not at all. I don't even care or feel embarrassed about that though...(having a stoma)I just want to live and be here with my babies. I don't even know yet what stage my cancer is..I'm really freaked out about that part. I'm so scared it will be 4 and everything says a 5% survival rate. That's horrible...to be numbered like some lab rat..I have the feeling I'm gonna hate hospitals.

Anyway, I know I'm rambling. I just don't know who else to talk to or who will understand. I feel so overwhelmed right now. You are all so kind and brave..thank you for any and all advice/kind words.

Carrie

Carrie -

Re:
"I don't even know yet what stage my cancer is..I'm really freaked
out about that part. I'm so scared it will be 4 and everything says
a 5% survival rate."

Ok, now you know the odds and the real statistics! And?

And I and others have been around for a lot longer than our
prognosis! So knowing the statistics and preparing for the worst
is a good thing! But knowing that it -is- possible that you will
-not- be another "statistic", is even better! Just make sure
you prepare for the worst, then you won't have another thing
to worry about -IF- you ever reach that point in life, OK?

As far as being 1, 2, 3 or 4? I have had three friends that
were stage one, and died within two years of their diagnosis.

I'm a stage 4 (thought I was a 3c) since 2006 and I'm here
typing to you. You'll eventually hear from others here that are
also a 3c or 4 and have been around even longer than myself.

But do prepare, because cancer isn't called a "terminal disease"
for laughs; there's plenty of reason to be afraid, but you should
not allow that fear to steer you into things that may do you harm.

Resection? My operation in 2006 involved the removal of a
major tumor in the colon. The tumor had grown through one
section of intestine, went outside it and grew into the adjoining
(traverse) section. They took it out and stitched the intestine
back together, and I had no ostomy. Less than a week into
recovery (in ICU), the surgical site became infected. The stitches
leaked and I became contaminated internally requiring a second
operation to re-stitch the intestine back together. I don't know
what brand of thread they used, perhaps something from the
dollar store, because less than a week later it leaked more,
requiring a third operation. And with that third operation came
a wonderfully placed Ileostomy!

(My profile page is here!)

So there you have it! You just can't predict what's going to happen,
with exception to the bills you can expect to have in your mailbox.

Take your time and try to learn as much as you can about
cancer, and the types of treatments for it. Do not be afraid of
making a choice that you feel is correct, even if physicians
tell you differently!

Try to allow your own instincts for self preservation; your own
intuition that provides your own survival instincts, to guide you
through this part of your life. "Trust thyself"!

You'll do fine, just take it a day at a time and don't rush into
anything. Get second and third opinions whenever a situation
arises that will be a life-changing event. No physician worth
anything will be annoyed with you getting another opinion!

In fact, most busy physicians learn of new techniques and methods
from other physicians, via a patient that's gone through the trouble
of seeking other advice. So get other opinions whenever you can!

If you presently have a near total obstruction that cannot be
cleared without surgery, make sure you re-read my last note
concerning the ostomy preparation! And ask the surgeon if
he will be using the special products that may help avoid
adhesions.

Write yourself some notes regarding questions you have,
and please......take along someone to each appointment
that is capable of taking notes and paying attention. You
will need help remembering what's been said, and it's difficult
to pay attention to details when you're emotionally involved!
A second pair of ears is very helpful!

A day at a time, Carrie! You'll do fine !!

Best of health!

John

Luckygirl2

carrieh said:

Thank You So Much
Thank you so very much to everyone who responded...at this point it feels good just to know I'm not alone. I've never been so afraid of anything in my life. It helps to know what to expect...just to know someone else has felt this way.

I don't know a lot yet about my condition. The tumor is, I believe..located just after the first bend in the colon...the doctor couldn't even get the colonoscope around it to see if there were more. It's a adenocarcinoma..moderately differential...(I don't know what the moderately differintial part means-I didn't understand what I read online..and I like to know everything).

I see a colorectal surgeon in springfield Missouri-Mercy Saint Johns Hospital on Monday. I live in a small town in Arkansas and don't want to be treated here. The doctors also said surgery soon and if needed other treatments after. It's a big blockage.

When you have a resection, do they sew it back together while you are in surgery or do it later...I know sometimes not at all. I don't even care or feel embarrassed about that though...(having a stoma)I just want to live and be here with my babies. I don't even know yet what stage my cancer is..I'm really freaked out about that part. I'm so scared it will be 4 and everything says a 5% survival rate. That's horrible...to be numbered like some lab rat..I have the feeling I'm gonna hate hospitals.

Anyway, I know I'm rambling. I just don't know who else to talk to or who will understand. I feel so overwhelmed right now. You are all so kind and brave..thank you for any and all advice/kind words.

Carrie

sounds like we could be neighbors
Hi Carrie

I live in a small town in Arkansas as well, I was diagnosed with Stage IIIB last year, 10 days from now in fact. I had 16 inches of my colon removed (God knew what he was doing when he gave me all that colon ). I believe my pathology report said the same thing as yours, adenocarcinoma..moderately differential, plus a lot of other stuff. I was not blocked though, my tumor was about 3x3 inches. I can't help you with the blockage and diet, I was dx on the 10th of June a Friday and had surgery on Monday the 13th.

Like you when I read Stage IIIB, I thought crap that's like 1 bump from Stage IV..that means I'm not going to live long. Crap even Stage III is 5 year survival rate (I don't read those statistics anymore...I refuse to be a statistic!) I had my surgery, six months of chemo and I'm still here! I had such a short span between dx and surgery, I did not get really scared until right before I went in surgery. My surgeon took out my 16 inches reconnected me and I drank miralax for several weeks. Cancer was in 4 of my 14 lymph nodes so I did six months of chemo just to make sure no more nasty cancer cells were still lurking around. Now I'm rambling.

I guess what I'm trying to say is you will make it through your surgery and any treatments, you may not think you are at the time, but you will. You'll be scared and you'll be mad and you'll be sad but you will be here for your babies. But you will also discover how very precious every day is, you'll discover what is truly important in your life, you will learn to truly not sweat the small stuff, you will learn how to rest and find a peace inside yourself, you will laugh at yourself, trust me, you'll laugh. You will find that talking about your poop really doesn't bother you. You will cry alot. I still do sometimes.

Ask questions, start now making a list for Monday. Get a spiral notebook that you can carry easily in your purse (questions will pop in your head all the time) don't put off writing it down, trust me, you'll forget. remember everyone is different your body will respond differently from others.

This site is great, wish I had found it when I was first diagnosed. Lots of support, lots of wisdom. Try to stay positive, cry when you need too, hugs to you and wishing you the best on Monday. In box me if you need too since we are practically neighbors. This journey will be trying but you won't be alone.

hugs and prayers
Debbie

thingy45

Lovekitties said:

Dear Carrie
I would ask that you stop looking at the stats, as most are from studies years ago, and there have been improvements in the meantime. Besides, no one knows which side of the stats they will be on...just might be the good side!

When you see the colorectal surgeon he/she will give you some more information to work with. If a perm or temp stoma is in your future be sure to get referral to the Ostomy nurse. That person will help to insure that you are marked in the best possible place for placement of the stoma. I am glad to hear you are not afraid of having one. I often think some folks opt to delay or have no surgery out of fear of an ostomy.

As you and your medical team get a plan in place be sure to let us know and ask any questions you may have. Some folks have had a temp ostomy for a while and then go back for the reconnect. Some like myself end up with it being perm.

Being overwhelmed is normal, but as you get a plan in place you will feel some better. Please let us know how your doc appointment goes on Monday.

Best wishes,

Marie who loves kitties

Dear Carrie
Dear Carrie,

Try to calm down, I was in the same position last year, Total blockage, the scope was not able to pass by it. Left High up, it blew up and ended up in two other places.I lost half my colon. I have been lucky, no bag and now one year later I am cancer free. I also had a ardinocarcenoma, the size of a basebal, in total weighing in at 10 lbs.
So you see, there is hope.
I will put you on my prayer list, Best Wishes,
hugs,Marjan

Annabelle41415

Welcome
Welcome to the group. I'm thinking the same as others that you should have surgery now if you are in that much pain. If the tumor is blocking your colon what are they exactly waiting for and not doing surgery now? This just sounds more urgent and taking laxatives doesn't always work. You have every right to be afraid because it is a very scary situation. The surgery is no walk in the park but you will get through it and if you are in that much pain now, I'm sure that getting this surgery and the blockage taken care of should ease your mind more. You will be in the hospital from about 4-7 days. You will probably get a pain pump that you will self administer pain medication. For your doctors appointments (which you will have many) it is a wise choice to take someone with you as your head will be spinning and you'll either not hear it all or interpret it differently. It's a good idea too if you click on some of the members names here and read what they have been through. Most of us have written what we have gone through on the "about me" page. You can get through this and we are here to help.

Kim

glinka65

hey
im sorry about what your going through, i have had 2 colon resection surgeries, scary yes, but know your in good hands at the hospital they will do everything to make you at ease, the surgery itself is tough, tube in the nose, cathader very sore, i must say the worst part is no food for days.... just ice chips, after a few days they will have you up and walking around the floor, it hurts buy the morphine pump will help when your back in bed, good news broth and jello will taste like the best dinner you have had..use your time when you get home to rest, lord knows the hospital is no place for that, vital checks all the time plus the blood tests, so its sooo nice when you get home!! best advice, walk when you can it truley helps sounds crazy but it works, im sure you will do great!!! my thoughts and prayers are with you!!! im a big wimp when it comes to dr stuff, so if i can do it i know you can as well!!! keep us posted!!!

Helen321

Hi Carrie, I'm a newbie
Hi Carrie, I'm a newbie myself and three weeks ago I actually felt like I wanted to die. Which was weird because I was freaking out because I didn't want to die. I have rectal cancer so I'm in a different position and can not share anything medical but I can say this - Listen to these people! They are so helpful. Read their stories and you realize what they're saying is true and what one of them said to me day one. Cancer is not a death sentence! And with cancer there is no such thing as normal. So true! Statistics smatistics. Did you know those statistics include people who die from heart disease, old age, and car accidents. They are not people who necessarily die from cancer and most who do are over the age of 75 and some who choose no treatment. When I read that, I calmed down so much. The statistics are broken and outdated. I did end up getting an anti anxiety temporarily because I had gotten myself in such a tizzy. Three weeks later, I don't need it. Last weekend I enjoyed myself completely. Day one is hard, day two is harder, day three is hardest. Hang in there and as you get more info and start to see how much things have improved since those outdated articles, you are going to feel better and better. As for diet, the doctors have their reasons. After my surgery I was only allowed to have liquid, then bits of chicken, then fruit. I was so excited to have bread after a few weeks. I also drank 64 ozs. of water a day and had to take stool softeners daily. It's just what you have to do at the moment, your body will be okay with it.

Phil64

similar experience
Carrie,

I was told I had colon cancer on Apr 21. The tumor was blocking about 3/4 of my colon. I tried to eat light and take laxatives as well and simply endurred the cramps and gas.

The lower anterior resection was completed on 5/11. I had an epidural for controlling the pain and I have to say I didn't feel much pain recovering. The nurses told me that walking the best way to help the healing process so I pushed my IV pole around the halls of the hospital at least three times a day. Transitioning off the epidural to vicodin was one mistake I made. I tried to be tough and didn't take the vicodin right away. I recommend you take the max dose they give you at least at first. Even so, while I did feel pain it was not unbearable.

The good news is within a few days of getting home from the hospital I was able to use the bathroom and have been cramp free.

I have still not started chemo as unfortunately I have a lung nodule that is scheduled to be removed today. Hopefully this lung nodule is nothing, but given the growth rate the doctor thinks it's most likely cancer. Anyway, I'll be starting the chemo soon.

Good luck to you with your upcoming surgery. I'm sure you'll do just fine.

Phil

Phil64

John23 said:

Carrie -

Re:
"I don't even know yet what stage my cancer is..I'm really freaked
out about that part. I'm so scared it will be 4 and everything says
a 5% survival rate."

Ok, now you know the odds and the real statistics! And?

And I and others have been around for a lot longer than our
prognosis! So knowing the statistics and preparing for the worst
is a good thing! But knowing that it -is- possible that you will
-not- be another "statistic", is even better! Just make sure
you prepare for the worst, then you won't have another thing
to worry about -IF- you ever reach that point in life, OK?

As far as being 1, 2, 3 or 4? I have had three friends that
were stage one, and died within two years of their diagnosis.

I'm a stage 4 (thought I was a 3c) since 2006 and I'm here
typing to you. You'll eventually hear from others here that are
also a 3c or 4 and have been around even longer than myself.

But do prepare, because cancer isn't called a "terminal disease"
for laughs; there's plenty of reason to be afraid, but you should
not allow that fear to steer you into things that may do you harm.

Resection? My operation in 2006 involved the removal of a
major tumor in the colon. The tumor had grown through one
section of intestine, went outside it and grew into the adjoining
(traverse) section. They took it out and stitched the intestine
back together, and I had no ostomy. Less than a week into
recovery (in ICU), the surgical site became infected. The stitches
leaked and I became contaminated internally requiring a second
operation to re-stitch the intestine back together. I don't know
what brand of thread they used, perhaps something from the
dollar store, because less than a week later it leaked more,
requiring a third operation. And with that third operation came
a wonderfully placed Ileostomy!

(My profile page is here!)

So there you have it! You just can't predict what's going to happen,
with exception to the bills you can expect to have in your mailbox.

Take your time and try to learn as much as you can about
cancer, and the types of treatments for it. Do not be afraid of
making a choice that you feel is correct, even if physicians
tell you differently!

Try to allow your own instincts for self preservation; your own
intuition that provides your own survival instincts, to guide you
through this part of your life. "Trust thyself"!

You'll do fine, just take it a day at a time and don't rush into
anything. Get second and third opinions whenever a situation
arises that will be a life-changing event. No physician worth
anything will be annoyed with you getting another opinion!

In fact, most busy physicians learn of new techniques and methods
from other physicians, via a patient that's gone through the trouble
of seeking other advice. So get other opinions whenever you can!

If you presently have a near total obstruction that cannot be
cleared without surgery, make sure you re-read my last note
concerning the ostomy preparation! And ask the surgeon if
he will be using the special products that may help avoid
adhesions.

Write yourself some notes regarding questions you have,
and please......take along someone to each appointment
that is capable of taking notes and paying attention. You
will need help remembering what's been said, and it's difficult
to pay attention to details when you're emotionally involved!
A second pair of ears is very helpful!

A day at a time, Carrie! You'll do fine !!

Best of health!

John

I also found it helpful to record the appointments and listen to them afterwards. Given that I tend to quickly go into shock, I find it useful to listen back and I hear things I didn't even recall. I downloaded an app to my iphone which allows it to record rather nicely.

WinneyPooh

Perforated colon
Carrie, i must warn you to do what the doctors say, if your colon become totally blocked you will run the risk of Perforating your colon and this can kill you. not to mention it will be the worst pain you ever experienced. If you feel like you are so bloated and intense pain in the abdomen, go to the hospital do not wait. I waited only about 10 hours to where i was screaming in pain before I went to the hospital and my colon was perforated due to the blockage and I was emergency operated on and spent the next 21 days in the hospital.

Your diet needs to be liquid only I know this is hard but it will help with the laxatives. as as that is concerned i found milka magnisia is what works best and less cramping.

You need to get help with your children, luckily mine were in there late teens but they still did and do not understand mommy always in the bathroom

the reason for the junk food diet is that sugars breakdown easier and turn to liquid, you have to stay away from fiber because it is to bulky and will clog you up.

I would suggest that you talk to your doctors about radiation or surgery as soon as possible.

I wish you all the well and I don't write as much but when i see a question like this and i can tell you from experience how severe this is I am here to tell you all the nasty scoop. that maybe you doctors are hesitant to tell you.

Please remember if the pain is super bad and unbearable that you scream out go to the hospital.

take care
Penny
3 years and still fighting

abrub

carrieh said:

Thank You So Much
Thank you so very much to everyone who responded...at this point it feels good just to know I'm not alone. I've never been so afraid of anything in my life. It helps to know what to expect...just to know someone else has felt this way.

I don't know a lot yet about my condition. The tumor is, I believe..located just after the first bend in the colon...the doctor couldn't even get the colonoscope around it to see if there were more. It's a adenocarcinoma..moderately differential...(I don't know what the moderately differintial part means-I didn't understand what I read online..and I like to know everything).

I see a colorectal surgeon in springfield Missouri-Mercy Saint Johns Hospital on Monday. I live in a small town in Arkansas and don't want to be treated here. The doctors also said surgery soon and if needed other treatments after. It's a big blockage.

When you have a resection, do they sew it back together while you are in surgery or do it later...I know sometimes not at all. I don't even care or feel embarrassed about that though...(having a stoma)I just want to live and be here with my babies. I don't even know yet what stage my cancer is..I'm really freaked out about that part. I'm so scared it will be 4 and everything says a 5% survival rate. That's horrible...to be numbered like some lab rat..I have the feeling I'm gonna hate hospitals.

Anyway, I know I'm rambling. I just don't know who else to talk to or who will understand. I feel so overwhelmed right now. You are all so kind and brave..thank you for any and all advice/kind words.

Carrie

Carrie,

My surgeon resected my colon in 3 places, and sewed the ends back together at the same time. I now function perfectly normally. In some cases, they want to give the bowel a rest, and create a temporary ostomy. A lot depends on what they find in there.

While on the one hand, the low-fiber, low residue diet is essentially what most people should avoid (white bread, plain (not whole grain) pasta, cooked fruits and vegetables if any, etc.) it means that you are minimizing your chances for a total blockage while you are pre-op. In addition, after my resections, I was on the low-fiber, low residue diet for 6 weeks post-op to facilitate the healing of the parts sewn back together. You don't want roughage bumping its way over the incisions.

Recovery varies by individual; I know some who were up and running within a couple of weeks of surgery, then others (like me) who had complications, and took lots of time to get back on their (our) feet.

Re pain meds: ask what you can take; what non-opioid options are available or if you can take narcotics provided you also take colace or other softeners/laxatives. You should not be in pain.

Good luck to you. You've found a wonderful resource in this board.

Alice

danker

carrieh said:

Thank You So Much
Thank you so very much to everyone who responded...at this point it feels good just to know I'm not alone. I've never been so afraid of anything in my life. It helps to know what to expect...just to know someone else has felt this way.

I don't know a lot yet about my condition. The tumor is, I believe..located just after the first bend in the colon...the doctor couldn't even get the colonoscope around it to see if there were more. It's a adenocarcinoma..moderately differential...(I don't know what the moderately differintial part means-I didn't understand what I read online..and I like to know everything).

I see a colorectal surgeon in springfield Missouri-Mercy Saint Johns Hospital on Monday. I live in a small town in Arkansas and don't want to be treated here. The doctors also said surgery soon and if needed other treatments after. It's a big blockage.

When you have a resection, do they sew it back together while you are in surgery or do it later...I know sometimes not at all. I don't even care or feel embarrassed about that though...(having a stoma)I just want to live and be here with my babies. I don't even know yet what stage my cancer is..I'm really freaked out about that part. I'm so scared it will be 4 and everything says a 5% survival rate. That's horrible...to be numbered like some lab rat..I have the feeling I'm gonna hate hospitals.

Anyway, I know I'm rambling. I just don't know who else to talk to or who will understand. I feel so overwhelmed right now. You are all so kind and brave..thank you for any and all advice/kind words.

Carrie

Carrieh
Just rely on this site for support and information. You will be given nothing but the truth with much support. I was dxed at age 77 with colon tumor. Chemo and radiation preceeded colon resection. At time of resection was giver ileostomy. Two months later had ileostomy reversed. Had a few complications ,but they resolved themselves. Have now been NED for 18 months. Your young age is in your favor. In 2 days I'll be 80. It is not an easy path, but certainly a doable one. Hugs and good luck to you.

tootsie1

Hi
Hey, Carrie.

I'm sorry you're so frightened right now. We've all been there. *hugs* It's even harder when you're feeling so lousy, too.

Hopefully you will have surgery or other treatment soon, so you can start the process of healing.

*hugs*
Gail