I Have a Life Again! Updated for those who are interested

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DarknessEmbraced
Posts: 2849
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: I Have a Life Again!

Postby DarknessEmbraced » Tue Aug 08, 2017 5:39 pm

I'm glad it helped you and that you are enjoying yourself!*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

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: I Have a Life Again!

Postby JudeD59 » Thu Aug 10, 2017 2:04 pm

I am back home again! It was a wonderful, glorious trip that I never thought I'd have the opportunity to take, but it was so exhausting! It was sad when it was over, but a relief to be home.

The rest of the days in Wyoming went just as well without any poop surprises. I did have some gas pains in the evenings, but I would just find a private spot and sort of, um, jostle the gas free and then I was fine. My whole family was shocked by how much I participated and how well I withstood the 12 hour days in the car along with all the hiking and climbing. My husband said over and over that he hadn't been excited about the vacation because he worried that I would be stuck back at the resort most days and would grow more depressed by all I could no longer do with the family. It wasn't just from the bathroom unpredictability; it was also how wiped out I am most days from the lingering effects of the treatments. But once we got there, I just kept pushing myself harder and harder and he had trouble keeping up with me on the trails. He was huffing and puffing from the altitude and so was I, but I kept putting one foot in front of the other knowing if I let up, I would lie in the dirt and sleep. And because of that, I not only was able to spend each and every day with my favorite people in the world, but we saw moose, coyotes, beavers, bald eagles, elk, antelope, bison, mule deer, and even a momma bear with her cub (safely from within our van, luckily). Not to mention the stunning views of mountains, lakes, waterfalls, etc. I enjoyed the geysers and painted pots and all the geological wonders, but not as much as the wildlife, waterfalls, and the beauty all around us. We went on a three hour river raft tour and took a tram up to the top of a mountain. I wouldn't have risked doing either of those things before when my bathroom trips were so unpredictable.

We left the resort early Saturday morning after I had done my routine and had taken my meds-Percocet, Ativan, and a half of an Immodium. I didn't have any problems while on the flights or when we got home. I didn't really eat anything all day until we were home and then I just had a light supper before collapsing into bed. I woke up at eight Sunday morning and had to poop before doing my enema. I did the enema a few hours later and then had to poop several more times that night before my next scheduled one. I tried not to worry but just accept that my body was adjusting to the travel and time change and exhaustion. Monday was a little messed up with a bit more breakthrough bathroom visits, but by Tuesday, everything was back to normal. Nothing in between enemas Tuesday or Wednesday or so far today.

Although this isn't something I enjoy doing :shock: :mrgreen: I'm so glad it's an option for me that works. I've been really lucky that I hit on the right amount of water and setup that works for me right from the start. I really haven't had to change much at all. I chose not to take an Immodium Tuesday, yesterday, or today and I haven't noticed any difference, so I plan to continue skipping the Immodium for as long as it works. If I'm going somewhere special, like a wedding, I'll probably take a half as insurance.

I'm at the point now where when I'm finished emptying the bag into myself, I can calmly clean up all the supplies and wash my hands before sitting on the toilet to empty. I used to worry about leaks, but I haven't had any at all. Since I am able to hold it in for a good while, maybe that's why I can usually empty in one 15 minute sitting and not have to go back in and sit a second time. While I still have slight cramping for maybe a half of an hour, I just know there isn't anything left to come out. I don't know how I know, I can just tell. I also use tap water that is more on the hot side (definitely not burning) than lukewarm. And as soon as the bag is mostly empty, I shut the valve before the water in the tube can come down because I don't want any more air introduced than is necessary. Since I use the surgical lube packets, which I highly recommend, insertion is easier, but I have to hold the tube in because the lube is so slippery instead of sticky and the tube once slipped out. Now that was a mess. It was just water from the bag, but still a mess. Now I just gently hold the tube in place with one hand while controlling the water flow with the other. Easy peasy.

These are not easy things for me to talk about. They are private and intimate and about getting rid of waste product that we don't usually discuss in polite company. But cancer changed the rules and if me giving TMI details helps one person on here get a better quality of life, then I can take the blushes that have always come far too easily to my face.

If anyone has questions or wants to discuss this more privately, feel free to PM me anytime. I think the surgeon removed a large chunk of modesty along with the tumor, so I'm open to all questions. :lol: :wink:

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

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peanut_8
Posts: 2168
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: I Have a Life Again! Updated for those who are interested

Postby peanut_8 » Thu Aug 10, 2017 2:39 pm

I'm really happy for you Judy. Sounds like such a fun vacation, and now you can look forward t many more. :mrgreen:

peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

ams5796
Posts: 2272
Joined: Fri Feb 06, 2009 10:07 am

Re: I Have a Life Again! Updated for those who are interested

Postby ams5796 » Thu Aug 10, 2017 3:18 pm

Judy,

I loved reading about your trip. It sounds like it was absolutely wonderful. It feels so great when you feel like you're back to normal and able to participate in life.

I'm glad you shared your routine. I ca't read enough about enemas. :mrgreen: I've been doing the daily enema for quite a while but as I said before (again and again haha) I don't have it down. I get a tremendous amount of gas especially after a few days in a row. I can't calmly get up, clean up etc. I have to jump right to the toilet. I can't hold it at all. That may have something to do with my "problem." I honestly don't know why either of those problems occur. I have researched, watched videos :shock: and still run into the same problems. But, all that being said, it is still a great option for me. It truly has given me my life back. Like you, I don't love doing it, but I'm so happy when I'm done.

Again, thanks for sharing.

Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

tammylayne
Posts: 2168
Joined: Fri Jul 16, 2010 9:24 am

Re: I Have a Life Again! Updated for those who are interested

Postby tammylayne » Thu Aug 10, 2017 4:42 pm

HaPpY DaNcE!!!!!!!!
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

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susie0915
Posts: 549
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: I Have a Life Again! Updated for those who are interested

Postby susie0915 » Thu Aug 10, 2017 5:02 pm

That is so awesome Judy. I know exactly how you feel. I have traveled 3 times since beginning daily enemas in February. I wish I would've known last August when I went on a European cruise. It was still fun but didn't sign up for long excursions and bathroom issues were always on my mind. I have only had a couple times in the past six months when I have had to go later in the day after doing an enema. An even though I wish I didn't have to do them, it is so much better than my life before and the stress I felt and the restriction I felt. It only takes about a half hour every day, and gives me so much more confidence and freedom. I was taking two lomotil in the morning and two immodium at night, but dropped the immodium lately and haven't noticed a difference. In time, I will probably give up the lomotil too and only use when I really need to be sure no issues will arise. I never thought I would talk about this but like you said cancer changes your attitude about the whole digestive process. Like my stoma nurse told me, "it's just poop". And hopefully our experiences can help others dealing with the same issues we have. Again I'm so happy you had a good time and were able to participate in all the activities. :D

Susan
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

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susie0915
Posts: 549
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: I Have a Life Again! Updated for those who are interested

Postby susie0915 » Fri Aug 11, 2017 3:03 pm

I do have a question. I have been doing the daily enema with no problems for six months. However, today I did my regular morning enema played golf, and eight hours later I went to grocery store and experience significant leakage of fluid. I have never had that before. Generally i wait an hour after my enema and I'm good to go anything that's going to come out has. I just wonder if it was residual fluid from the enema that finally made its way down, but 8 hrs after seems like a long time. Hopefully this was just a fluke since I have never had this happen in the past. I would love to hear anyone's thoughts. Maybe something just upset my digestive system i only had my normal coffee and a banana, so really didn't eat anything out of the norm or maybe I have a bug. :cry:
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

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CRguy
Posts: 9323
Joined: Sun Feb 10, 2008 6:00 pm

Re: I Have a Life Again!

Postby CRguy » Fri Aug 11, 2017 10:21 pm

JudeD59 wrote:These are not easy things for me to talk about. They are private and intimate and about getting rid of waste product that we don't usually discuss in polite company. But cancer changed the rules and if me giving TMI details helps one person on here get a better quality of life, then I can take the blushes that have always come far too easily to my face.

If anyone has questions or wants to discuss this more privately, feel free to PM me anytime. I think the surgeon removed a large chunk of modesty along with the tumor, so I'm open to all questions. :lol: :wink:

Judy


Guess you ARE in the right place after all sista' :mrgreen:

been a vet since 1981 and ... have been shat AT
shat UPON, pissed ON and pissed AT, bitten and scratched
HURLED ON and hurled AT, stomped and kicked ...... :twisted:
... B4 I even had my own CRC issues .... :shock:

TMI ... ???? WTF ?? on THIS forum ????

NO SUCH THANG

SINCE I became a CRC Stage IV guy .....

NOTHING IS OFF LIMITS when we need to deal with the reality of who we are
what we've been/are going through ....
and WHAT IS !

WORD :wink:

paying it forward to, and with, homies here
IS why we are all HERE !

Thank you for sharing all the stuff which is NOT comfortable for YOU

BUTT ... please know that at least one or many other members may well have a leg up on all this SHIT :shock:
JUST because you chose to share


I LOVE THIS FORUM
and everyone who keeps it REAL

Harmony
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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susie0915
Posts: 549
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: I Have a Life Again! Updated for those who are interested

Postby susie0915 » Thu Aug 17, 2017 2:40 pm

A question for all those that do the daily enema. Do you ever have a day where after doing your enema you just feel off? Every couple weeks I will have one of these days, where I have less energy maybe feel a little gassy so just stay at home. Usually it passes without any bathroom issues and the next day I'm fine. I'm wondering if it's something I've eaten the day before. I would love to hear from anyone who can maybe shed some light or may experience the same thing.

Susan
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5


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