Well, hell.

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JennPixie
Posts: 37
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Well, hell.

Postby JennPixie » Sat Jan 27, 2018 7:44 am

Not so free and clear after all.

Went in for reversal on Jan 3rd, and thought things were gonna swing to more awesomeness. Woke up with loop illeostomy. >sigh< Butt I can live with that. 6 weeks, easy-peasy.
Except... well, there was a node discovered while doing the surgery. And my doc didn't like that. Sent it and a few other small things to pathology. Came back... cancer.
Damnit!
So now I am mad, scared, confused, scared and mad. Facing chemo for 6 months before I can even think of removing the bag (I hate this thing) and I have no idea what to expect.

Doc seems very positive, says I am young strong, and have a very good chance of coming though just fine. But I am still scared...
:(
Any thoughts on what I can expect? Advice on getting through? Self care? Anything.?.
F, 44y/o
Colon cancer, ascending colon
Stage 4
NTN: T4N1M1
Colostomy, reversal, loop illeostomy

Started FOLFOX Feb. 14th...

A work in progress...
...Aren't we all.?.
8)

JennPixie
Posts: 37
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: Well, hell.

Postby JennPixie » Sat Jan 27, 2018 7:56 am

Also wondering... few days ago, I had some (tiny) actual poops. Like, from the botton, not into my bag.
Since then... loads of pressure feeling like I have to go, but no more butt poop. Just into the bag.

What's the deal? Can anything ease that pressure and near irresistible urge to push/bear down? It's uncomfortable, and frustrating when nothing comes out...

Anyone else have this issue?
I was gonna ask my doc, but she hit me with the new cancer so soon, I totally forgot to ask her about the pressure/pushing poo thing.
F, 44y/o
Colon cancer, ascending colon
Stage 4
NTN: T4N1M1
Colostomy, reversal, loop illeostomy

Started FOLFOX Feb. 14th...

A work in progress...
...Aren't we all.?.
8)

heiders33
Posts: 200
Joined: Sat Nov 04, 2017 11:08 am

Re: Well, hell.

Postby heiders33 » Sat Jan 27, 2018 1:47 pm

I am so sorry to hear about this. That must have been so disappointing and frustrating when you woke up. I felt some of that uncomfortable pressure in the five weeks after my LAR surgery. It turned out to be gas, and I took Gas-X and drank fennel tea which helped. It could also be that there is mucus that wants to get out, but isn't for some reason. I hope you get answers soon!

All I can say is, take it one day at a time and don't think too much about the six months as a whole that you have in front of you. It helps.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges
May 2018: CT scan showed liver spot, MRI scheduled

JennPixie
Posts: 37
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: Well, hell.

Postby JennPixie » Sat Jan 27, 2018 2:23 pm

Yeah, I have passed a little gas as well as those tiny poops. But if the rest of this pushing is also gas, I'll see if tea helps. *I used Gas X before, and it didn't help much. >shrug< don't know why.

Mostly, I'm kind of amazed... the nodes were too small to be seen, in spite of how many scans and scopes and looking from damn near every angle possible... but there's just some things you gotta go IN to find. Am glad they were found, and... I feel like I'm on a roller coaster, emotionally. Zipping from angry, to scared, to okay, to baffled, etc...
It's exhausting! :shock:

Taking it each day. The only way.
F, 44y/o
Colon cancer, ascending colon
Stage 4
NTN: T4N1M1
Colostomy, reversal, loop illeostomy

Started FOLFOX Feb. 14th...

A work in progress...
...Aren't we all.?.
8)

Caat55
Posts: 345
Joined: Sat Dec 23, 2017 6:01 pm

Re: Well, hell.

Postby Caat55 » Sat Jan 27, 2018 2:45 pm

Wow Jenn.. what a disappointment for you. Better out then in, that's my hope as I go into surgery. Wonder what I wake up with after all all this planning. Hope you get some relief and some answers.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

Lee
Posts: 5534
Joined: Sun Apr 16, 2006 4:09 pm

Re: Well, hell.

Postby Lee » Sat Jan 27, 2018 3:14 pm

What was your stage following surgery? Am I correct to assume you have not had chemo?

So very sorry for your news, butt the fact that they got the nodes out is good. Hang in there.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

JennPixie
Posts: 37
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: Well, hell.

Postby JennPixie » Sat Jan 27, 2018 3:32 pm

Lee wrote:What was your stage following surgery? Am I correct to assume you have not had chemo?

So very sorry for your news, butt the fact that they got the nodes out is good. Hang in there.

Lee

Doc said stage 4, I think. She said that that used to be 'time to tidy up your affairs' but that's not so much the case these days. At 44, she said There's a decent chance for a "home run" (all clear and NED) or at least a very good life with some maintenance. Like living with diabetes. Just something to monitor.

I know they don't have a crystal ball, and everyone is different but I do sometimes get frustrated with NOTHING being definite! Lol, it's always possible, maybe, likely etc...

But no, never had chemo, coz after my first surgery, I took such a long time to heal. So many months had passed, and they said they don't typically do chemo so long after. Okay...
Blood drawn, no markers. Scans, no signs. More blood work, more scans, a scope, more blood... it was all clean. Nothing was found until she did the colostomy take down and reconnecting stuff... tiny nodes and a bit that she cut out for the reattachment... there it was.

So now I have a few appointments coming up, one of them is to get the port done, and from there, every couple of weeks for 6 months.

Putting together a chemo playlist so I at least have some cool music to while away the time...
F, 44y/o
Colon cancer, ascending colon
Stage 4
NTN: T4N1M1
Colostomy, reversal, loop illeostomy

Started FOLFOX Feb. 14th...

A work in progress...
...Aren't we all.?.
8)

JennPixie
Posts: 37
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: Well, hell.

Postby JennPixie » Sat Jan 27, 2018 3:34 pm

Caat55 wrote:Wow Jenn.. what a disappointment for you. Better out then in, that's my hope as I go into surgery. Wonder what I wake up with after all all this planning. Hope you get some relief and some answers.
S

Better out than in... yup. And better to find and treat than to not know and let it grow!

Prayers for the best success for you.
F, 44y/o
Colon cancer, ascending colon
Stage 4
NTN: T4N1M1
Colostomy, reversal, loop illeostomy

Started FOLFOX Feb. 14th...

A work in progress...
...Aren't we all.?.
8)

MissMolly
Posts: 487
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Well, hell.

Postby MissMolly » Sat Jan 27, 2018 4:01 pm

Jenn:
With a loop ileostomy it is normal and expected to pass fecal material (in all ways similar to an actual bowel movement) and mucus (ranging in color from white/pasty to light-brown/honey tinged as a “mucus poop”). It is also normal and expected to have rectal pressure and fullness that is similar to that signaling to you that you need to have a bowel movement via your backpassage/anus. Rarely do surgeons’s explain these expected post-surgery poops and rectal/low pelvis sensations which can leave people rightfully concerned and worried.

With a loop ileostomy, you have two stomas.

The “working” stoma is the orifice that connects to the upper functioning and active digestive tract. Liquid fecal material from digested food stuffs exit the working stoma into the ostomy pouch.

The “non-working or mucus” stoma connects to the lower diverted and resting digestive tract that ends/exits as your anus. Because the working stoma and mucus stoma are in close proximity to one another, invariably a small amount of overflow fecal material will flow into the mucus stoma (rather than flow into the ostomy pouch). The liquid ileostomy output migrates into the mucus stoma and “goes down the hatch” so to speak. It is this migrated fecal material that gives rise to the feelings of needed to have a bowel movement and to the actual passage of fecal material from your anus.

Sitting on the toilet is the best means to deal with the very real sensations. Sit on the toilet and allow the lower pelvic floor to relax. Do not force or strain. The mind-gut connection will signal to your nervous system that you have had a bowel movement and the rectal musculature will relax.

Be aware, too, that the diverted and resting length of large intestine will continue to secrete short-chain fatty acids, fatty polymers, mucus, and serous fluids. Your diverted section of large intestine is not aware that it has been disconnected, and will continue to secrete lubricating substances. These substances will migrate downward and form “mucus poops” that will exit from your backside/anus in much the same manner and process as having a normal bowel movement.

Having a loop ileostomy is a surreal experience and can take some time to become acquainted with. What feels unusual or unseemly today will become less perplexing and second nature in the days and weeks ahead.

Sending you gentle wishes for a smooth recovery,
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

JennPixie
Posts: 37
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: Well, hell.

Postby JennPixie » Sat Jan 27, 2018 4:45 pm

MissMolly wrote:Jenn:
With a loop ileostomy it is normal and expected to pass fecal material (in all ways similar to an actual bowel movement) and mucus (ranging in color from white/pasty to light-brown/honey tinged as a “mucus poop”). It is also normal and expected to have rectal pressure and fullness that is similar to that signaling to you that you need to have a bowel movement via your backpassage/anus. Rarely do surgeons’s explain these expected post-surgery poops and rectal/low pelvis sensations which can leave people rightfully concerned and worried.

With a loop ileostomy, you have two stomas.

The “working” stoma is the orifice that connects to the upper functioning and active digestive tract. Liquid fecal material from digested food stuffs exit the working stoma into the ostomy pouch.

The “non-working or mucus” stoma connects to the lower diverted and resting digestive tract that ends/exits as your anus. Because the working stoma and mucus stoma are in close proximity to one another, invariably a small amount of overflow fecal material will flow into the mucus stoma (rather than flow into the ostomy pouch). The liquid ileostomy output migrates into the mucus stoma and “goes down the hatch” so to speak. It is this migrated fecal material that gives rise to the feelings of needed to have a bowel movement and to the actual passage of fecal material from your anus.

Sitting on the toilet is the best means to deal with the very real sensations. Sit on the toilet and allow the lower pelvic floor to relax. Do not force or strain. The mind-gut connection will signal to your nervous system that you have had a bowel movement and the rectal musculature will relax.

Be aware, too, that the diverted and resting length of large intestine will continue to secrete short-chain fatty acids, fatty polymers, mucus, and serous fluids. Your diverted section of large intestine is not aware that it has been disconnected, and will continue to secrete lubricating substances. These substances will migrate downward and form “mucus poops” that will exit from your backside/anus in much the same manner and process as having a normal bowel movement.

Having a loop ileostomy is a surreal experience and can take some time to become acquainted with. What feels unusual or unseemly today will become less perplexing and second nature in the days and weeks ahead.

Sending you gentle wishes for a smooth recovery,
Karen

Thank you for the explanation! That helps me feel better about all of this.
I had a fair few loose "mucus poops" that looked kinda like rat poo in gel while I had my colostomy bag goin'. And I was used to the slight pressure of that. But when I had the more urgent, more insistent sensation with this... it was... Weird and uncomfortable more than a worry. My doc did say that there would likely be some "activity", and I told her that I'd had a few poops from my bottom... she noted that on her papers, but then didn't say anything more on that.
I was gonna ask about the pressure and all, but she jumped so quick onto my new cancer popping up, that all my previous questions fell right out of my head...

Again, thanks for your reply, I feel better, now.
Sipping on some ginger peach tea feels good, too :wink:
F, 44y/o
Colon cancer, ascending colon
Stage 4
NTN: T4N1M1
Colostomy, reversal, loop illeostomy

Started FOLFOX Feb. 14th...

A work in progress...
...Aren't we all.?.
8)

Lee
Posts: 5534
Joined: Sun Apr 16, 2006 4:09 pm

Re: Well, hell.

Postby Lee » Sat Jan 27, 2018 5:13 pm

JennPixie wrote:Doc said stage 4, I think. She said that that used to be 'time to tidy up your affairs' but that's not so much the case these days. At 44, she said There's a decent chance for a "home run" (all clear and NED) or at least a very good life with some maintenance. Like living with diabetes. Just something to monitor.
.


That is a very true statement from you Doc regarding people are beating this cancer today. When you say stage IV, where was your mets? Can I assume they got that out too?

It would help if you could provide some info below your signature that lets us know where you are on this journey. That way we can provide answers to your questions. I was assuming you were a stage I or II based on the fact it didn't look like you had chemo.

If the cancer is gone (tumor and met), this 6 months should just be mop up chemo to kill off stray cells. Yes, know in your heart you can beat this.

I am not a diabetic yet, butt we know it's comingl

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

JennPixie
Posts: 37
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: Well, hell.

Postby JennPixie » Sat Jan 27, 2018 7:09 pm

Lee wrote:
JennPixie wrote:Doc said stage 4, I think. She said that that used to be 'time to tidy up your affairs' but that's not so much the case these days. At 44, she said There's a decent chance for a "home run" (all clear and NED) or at least a very good life with some maintenance. Like living with diabetes. Just something to monitor.
.


That is a very true statement from you Doc regarding people are beating this cancer today. When you say stage IV, where was your mets? Can I assume they got that out too?

It would help if you could provide some info below your signature that lets us know where you are on this journey. That way we can provide answers to your questions. I was assuming you were a stage I or II based on the fact it didn't look like you had chemo.

If the cancer is gone (tumor and met), this 6 months should just be mop up chemo to kill off stray cells. Yes, know in your heart you can beat this.

I am not a diabetic yet, butt we know it's comingl

Lee

Honestly, my brain kinda fried as soon as she said that there was more cancer...
I'd have to look through my folder (and decipher a ton of stuff)... to know more about what all is going on. That might be a project for me, hubby, and doc to work on, honestly.

First time I went in, was emergency surgery for a large mass, perforation, and a few lymph nodes. I was opened up from navel to low pelvis, they had to use a noisy wound vac to help pull my body back together. While they were in there, a nasty ovarian cyst was removed. Woke with the colostomy bag and a long several months healing up

This time it was to take down the bag I had, do some reattachment, and... removed the girly bits (ovaries and uterus were really bad, had to go. Not cancer, but really really bad) Woke with the loop illeostomy. I was told that would be very likely, but at the time, we thought it would just be 6 weeks.

But when I went in for follow up, that's when doc told me there was more, and brought chemo into the conversation.
And my brain fried... :shock:

It does sound like it's a mop up the nasty buggers that might be hanging out, still. And I love how confident she is. Makes me feel better that yeah, I'm tough enough and stubborn enough to beat it. :wink:
But there are weepy moments, can't deny those...
F, 44y/o
Colon cancer, ascending colon
Stage 4
NTN: T4N1M1
Colostomy, reversal, loop illeostomy

Started FOLFOX Feb. 14th...

A work in progress...
...Aren't we all.?.
8)

DarknessEmbraced
Posts: 2990
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Well, hell.

Postby DarknessEmbraced » Sun Jan 28, 2018 4:10 pm

I'm sorry it wasn't better news and hope your chemo goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

User avatar
Shana
Posts: 342
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Well, hell.

Postby Shana » Sun Jan 28, 2018 9:59 pm

So sorry Jenn, glad that they found what they did and took it out. I hope you heal fast and this is just a short detour on your road to NEDville.
By the way my oncologist said the same thing to me, Stage IV can be managed like a chronic disease these days... good luck with chemo, hoping for the best!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh)
CT-Scan 9/17, 12/17, 3/18 Shrinkage of liver mets continues, no blockage
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA
CT scheduled for 5/11/18

JennPixie
Posts: 37
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: Well, hell.

Postby JennPixie » Tue Jan 30, 2018 11:14 am

:cry: My tummy's unsettled, and all I can do it wonder, worry, and wanna cry. I wonder how much is physically sick, and how much is me just stuffing fear into a ball so my fam won't fuss and worry over me.
I mean, I know they mean well when they try to comfort me, but sometimes, you just want a shoulder without words. Hubby doesn't like to see me cry, and tries to get me to breathe through it... M.I.L. can be sweet, but a bit much, words of encouragement that I've been so strong and brave, and I just... I don't want her to tell me all that... just let me cry!

So I stuff a lot of it back, and I wonder if that's part of what's making my stomach turn. That, and feeling bad about feeling annoyed with them for trying to help me... which adds to the sick feeling... >gah<

Sorry. Just venting, ranting, scared...

Anyone else try to eat their feelings back, just to keep family from knowing how you really feel? Or am I terrible...
F, 44y/o
Colon cancer, ascending colon
Stage 4
NTN: T4N1M1
Colostomy, reversal, loop illeostomy

Started FOLFOX Feb. 14th...

A work in progress...
...Aren't we all.?.
8)


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