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Hi Everyone, I'm New

BuckeyedPeach
Posts: 14
Joined: Mar 2011

OK so I'm the "new kid in town," I guess. . .;-)

I was just diagnosed with colon cancer February of this year. I had a massive-sized tumor (soft ball size?) in my abdomen and by the way my doctors were talking, they were expecting a far worse prognosis than I received. It turned out my colon cancer was Stage IIa and another benign growth had grown, probably in reaction to it--all the way into my abdominal wall. I had to have major surgery (the old-fashioned sort) to have it all removed. Thankfully I did not need a temporary colostomy. I only had an opening left for a time in my incision due to an infection within my abdomen. That had to be packed daily until it closed (in a few weeks' time).

I was shocked, though, when I learned just how much colon I had to have removed. I figured it was just a bit of it--it was 2/3! In fact, it STILL gets to me when I think about it.

I had my surgery March 21 and it's now June 4, so I am basically back to normal activities, although I know it is going to take a good bit of time before all my pains stop.

One question I have is a kind of embarrassing one and personal one, but I figure if I'm going to ask it--this is surely the place. . . It hasn't been a major problem for me (yet!) because I am normally near a bathroom, but I have noticed that I no longer seem to get much warning when I need to have a bowel movement. It seems quite urgent. I am not quite sure what to do about this--I can control it (or at least have so far), but it concerns me should I ever be out in public and not close to a bathroom. I have tried a bit more fiber--and it isn't that my stools seem to be the problem really--it's just as if my brain isn't getting the signal that I have something to eliminate until it's practically the LAST MINUTE. I have no problems whatsoever with urination.

I plan to ask my new doctor who will be performing my colonoscopy in July about this problem and have read about it some on medical sites online. I know what possibly might be the cause (damage done during surgery that may be disrupting the "signal" to my brain that lets it know I need to empty the rectum), but I've also been hoping that in time, this might work itself out (sorry, no pun was intended there--gracious! lol).

Has anyone else experienced this problem and could you offer any tips, help, etc? I'm certainly hoping it won't be something I will need to be concerned about or require corrective surgery! I've been through quite enough!

I apologize in advance if I've given a bit too much information, especially for my first post. I look forward to getting to know people here--to learn from you all--and to perhaps make a few new friendships. :-)

Lisa

mukamom's picture
mukamom
Posts: 402
Joined: Oct 2010

Just wanted to say welcome to "the club", even though it sucks to be here. Can't give an answer to your question as I don't have any first hand knowledge, but others will chime in soon enough.
Don't worry about the nature of any question you may have...folks here have heard it all ( well maybe just most of it). It comes with the territory.

Again welcome..hope to see you around

Angela
Caregiver to husband Robert
Dx stage iv colon cancer 12/2008 and still kickin'

BuckeyedPeach
Posts: 14
Joined: Mar 2011

I watched my family as they were my "caregivers" through my ordeal and we "cancer survivors" just couldn't make it without you! Your husband is very blessed and I am sure he knows that. :-)

Lisa

khl8
Posts: 810
Joined: Nov 2009

Hi Lisa,
I am a rectal cancer survivor and lost quite a bit of my rectum and colon. I had the reseciton and the temporary illeostomy. I also get the "sudden urge" to go, and I mean sudden. I am almost 2 years post reversal and I still have times when I need to get to a bathroom immediatly. However, I began tracking and loggin the foods that I ate to see if there were any correlations between my food and the sudden urge. And when I looked over waht I had logged, I saw that salad and veggies went trhough me rather quickly. So I am careful about what I am going to eat if I know that a restroom might not be readily available. I love salad and would eat it all the time, but it no longer likes me, so I am just careful about where and when I eat it.

Kathy

BuckeyedPeach
Posts: 14
Joined: Mar 2011

- for the tips, Kathy!

I am going to ask my doctor about it, but logging what we eat sounds like a good idea. I know I can't always drink coffee as much as I'd like (but wasn't able to before my surgery either) and some other foods. . .

If my doctor gives me any tips or ideas, I'll also be sure to post them here. That will be in July. I must admit the "sudden urge" thing is something I hope I might be able to overcome.

Lisa

SisterSledge's picture
SisterSledge
Posts: 342
Joined: Feb 2011

Hi Lisa,

I had a goodly portion of my colon removed Sept2010 along with a benign tumor...the section closest to the rectum. I have the same urgency issue, plus it takes four or five visits before my colon is emptied for the day. My surgeon said that the rectum might retrain in time, but I haven't noticed much improvement since the surgery as far as urgency, bathroom visit frequency or the power to hold in farts.

At least once I get those multiple visits over with, I'm generally done with it for the day. I have also found that if I have to go out before I've gotten emptied, sometimes my body closes up and waits until I'm home again before progressing to remaining bathroom visits.

Welcome to the CC club, glad you've found us even though we'd rather you had no need.

Be well,
Janine

BuckeyedPeach
Posts: 14
Joined: Mar 2011

Thank you, Janine. I see this is tending to be perhaps a common problem following colon surgery. . .?

My surgeon said I might go more frequently and that my stools might be soft. They are soft, but not too bad and for a time I was using the restroom maybe once every 1 1/2 days, which is about what it used to be. But recently it's been once a day and sometimes a couple of trips before I'm finished (within a few minutes of each other).

I may need to just take note of what I'm eating, when, and how much. I may need to adjust to some things and I admit, I'm not good at that. I prefer to not have to think about stuff. . . ;-). But if it helps me, then perhaps I can just develop habits that will help me--and that in time I won't have to really think about anymore. ;-)

(Yes, I can tend to be lazy. . . )

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Lisa (from one Lisa to another!),

I read your profile and it seems we do have some things in common.

So far as the urgency, well I haven't even had colon/rectal surgery, but due to the radiation I have had and a rectal tumor recurrence, I definitely have urgency issues too which have gotten worse in the past year. I too try to watch what I eat and when I eat it. Coffee is a definite no-no for me now- just causes diarhhea. The problem, like you said, though is urgency- feeling the urge and needing to get to a bathroom very quickly, even when it's not loose stools. It is a bummer & I am worried about how I am going to manage on our upcoming cruise (July 31). Now at home, I need to eat my breakfast first thing and then allow at least an hour before I venture out of the house to empty my bowels. Usually on vacations, my family gets all ready first, then eats breakfast on the way out. It shouldn't be a problem on the days we're just on the ship, but on the days we got to port it might be. I'll figure it out, hopefully. I'm wanting to do all sorts of adventurous things when we're at port (Cabo San Lucas and Puerta Vallarta, Mexico), but I'll just have to see what I can handle. My hubby wants to ride horses in the jungle in Puerta Vallarta- I worry about having the urgency when I'm out on a horse in the jungle- that would not be pretty.

Anyhow, I have heard from other "semi colons" who have had the surgery that things do improve over time with needing to go less times a day, but I'm honestly not sure how the urgency part of it changes or not. My mom didn't have colon cancer, but she did have a colon resection four years ago due to a collapsed colon (closed in on itself and created a blockage). She used to have the urgency problem and I don't think it's a problem for her anymore. I think things seem to be worse for people who have their problems originate in the rectum vs. the colon.

Well, hugs and welcome to the board!

Lisa :)

John23's picture
John23
Posts: 2140
Joined: Jan 2007

It really Depends (pun intended) on what section of colon was
removed. If it was at the ileum, then you should ask if the
Ileocecal valve has been removed. If it has, then one of the
controlling factors for fecal matter has been lost, and will
result in faster transit time.

I have about a foot of colon left in (along with the rest of the
*** ociated parts), but I never had a reconnection and remain
an Ileostomate. Looking back, I'm glad I didn't get that reversal
I wanted so much. With only a foot of colon and no Ileocecal
valve, my time on the toilet would have been extensive and often.

The average individual has about 5 foot of colon. 1/3 isn't
very much to play with, is it? (No offense, but personally, I'll play
with anything).

Seriously, 1/3 just isn't a sufficient amount to dry up the remaining
liquid in the stool. The colon neutralizes the acid, and recycles the
liquid for our hydration. Without a sufficient amount (in my case; none)
hydration becomes a problem, as well as the lack of many nutrients
and the need for softer, less expensive toilet paper.

Increasing your liquid intake may result in looser stools and more
frequent pit-stops, by the way.

A colostomy (or ileostomy) isn't as bad as you may have thought.
Yes, it's a major lifestyle change, but so is having to sit on strange
toilets every twenty minutes, or passing wet gas at inappropriate times.
(yes, there ARE appropriate times!)(my bro-in-law's birthday is one)

Re:
"I had my surgery March 21 and it's now June 4, so I am basically
back to normal activities"

Usually, not lifting anything over 20lbs for the first 3 months, and
not over 40 lbs for about a year, is typical. Abdominal muscles
were cut to access the ........ stuff.... in the abdomen. Hernias
are fairly common after abdominal surgery, and lifting things, bending,
twisting, etc, doesn't help matters. I would use caution, and ask
the doc why he didn't mention it.

There -will- be adhesions to consider. Not right away, since they
take time (2-3 years) before they give any problem. But as the
adhesions form (and they naturally do as part of the healing process),
there can be a sharp pain here or there. It's simply the intestines
sticking to things they normally aren't stuck to. As things heal, they
adhere to other body parts if the contact with them is long enough.

And, the healing process allows rings of new growth around the
intestine, like a rubber band. Over time, these often contract.

I'm typing this because I like to scare people. Oh, and also
because I -hate- to see people blind-sided and getting all freaked
out because no-one ever mentioned to them, that these things
normally occur over time.

Re:
"I plan to ask my new doctor who will be performing my colonoscopy in July"

You're kidding, right? You just had major colon surgery in March,
and he's going to do a colonoscopy in July?

Do yourself a -big- favor, and get another colorectal surgeon's
opinion regarding that!

If you only have a foot and a half of colon left, what's he looking for
that he can't see with a flashlight? The healing process takes time;
the colonoscopy is a harsh treatment of healing tissue. And if cancer
wasn't noted during your March surgery, it certainly isn't going to
be seen 4 months later.

Get another opinion, willya'? You deserve better than that.

Anyway, that's my three cents worth.

Please stay well. I'm counting on you to stay well.
(I got $500 on you in the board pool)

John

marqimark's picture
marqimark
Posts: 242
Joined: Jun 2011

I am new also.

I went through all my 'crap' (pun intended) last year. Surgery March '10 and finished Chemo end of Oct.

I only had the first third of my colon removed and haven't had too much change in my daily habits.

Wish I could help with info but can only help with my best wishes.

Annabelle41415's picture
Annabelle41415
Posts: 6554
Joined: Feb 2009

Glad that your surgery went well and you are doing well with your recovery. Having bathroom urges is still something I'm dealing with. Never feel like you give too much information here, the more the better. We deal with every kind of situation here. Make a log as suggested and see if that may help your urgency. Come to us with any concerns or questions you have, someone is bound to have a suggestion or experience to share.

Kim

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

Hi, Just like you I am new here, had my operation April 25th 2011, I have learned to find out were the restrooms are,before I do anything else,just like you I have a need and cannot wait. No idea if it is air or the real thing. Food logging is a good idea. If I know I cannot go I do not eat more then a tea cookie, just in case. It is getting better, there is allways HOPE.
I also had a piece of the rectum removed and thought that that was why I have this problem.
Try to read back on a lot of posts, you learn a lot.
Best to you,
Marjan

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Just want to say welcome to the board. Sorry you are here. Most of us can relate to the bathroom issues, I found like Lisa that I soon knew what my bowel movement patterns were. I also knew that an hour after eating....head for home, if we ate out, then we could go on our outing. You may also.

Take care and big hug!

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

Welcome Lisa!

It took me a couple months before I could wait 5 or more minutes to find a bathroom. If I felt the need I knew I had to look for a bathroom. This made travel difficult, but not impossible. Plan eating time with travel times, etc...

It does get better! I just finished my chemo. (Round two with colon cancer for me.) NED since April. Wooo Hooo!

If you have questions just as them, someone has been there before if not several.
Best Always, mike

AncientTiger's picture
AncientTiger
Posts: 130
Joined: Mar 2011

Hate that you had reason to find us, but glad you did! Can't really speak to your exact situation, but I know I had the "RED ALERT" trips to the restroom for a couple of weeks after my ileostomy reversal back in November of last year. But... it gets better. Be patient with yourself :D

Like you, my surgery was "old school", got cut from sternum to nearly the southern no fly zone, with three of those lovely drain holes left in afterwards. Holy COW that packing/unpacking process is something, isn't it?!?!?!

And I agree with John... a colonoscopy FOUR MONTHS after surgery?!?!?!? What the heck?!?!
DEFINITELY get a second opinion on that. My colon resection was March 2010 and I had my colonoscopy at the end of May THIS year.

So what's the treatment plan Lisa? Wait and see approach, or maybe a dash of mop-up chemo?

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