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

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DarknessEmbraced
Posts: 3051
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: 2231
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: 2276
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: 2175
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: 785
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 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,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
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

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susie0915
Posts: 785
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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 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,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
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

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CRguy
Posts: 9537
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
11 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: 785
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 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,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
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Strong
Posts: 7
Joined: Sat May 05, 2018 8:56 am

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

Postby Strong » Sat May 05, 2018 9:31 am

Hey y'all,

I'm new to the forum and this is my first post. I got here by googling "enema lars" and I've been so inspired by what I've read. I've been doing daily enemas since 11/16, so I'm probably just past the 500 mark. I learned how to do this without the amazing support of this group and I wish I'd connected with y'all a lot sooner! Anyway, I'm joining the Enema Club and I'm available to discuss the topic privately or publicly. Since everyone is different, maybe something in my experience can be helpful to someone.

I use the standard red bag although I changed the tubing to clear so I could monitor its cleanliness and check for air bubbles. I'm able to use the entire 2-quarts and as long as I do it daily without skipping it goes smoothly. I eat pretty much what I want but stay away from spicy foods for the most part. I occasionally take an Imodium but I've found that any problems I have with my enema process seem to be related more to stress and its effect on my nervous system than my diet, i.e vacation enemas go more smoothly than stressful work-week enemas. Further details available on request!

Quick summary of my background: I'm male and got my stage 3b diagnosis 10/15 at 44 years old. Chemoradiation followed by lar with ileostomy 2/16. I had an intestinal blockage and an abdominal abscess 2 weeks post-op leading to 3 weeks in the hospital and 6 weeks of TPN. Adjuvant chemo for four months ending 8/16, then ostomy reversal 9/16. Started enemas 11/16 and was able to return to work as a result.
47 year old male, DX at 44
10/15 DX rectal tumor T3N1M0
11/16 6 weeks chemo-radiation
2/16 LAR and ileostomy
3/16 intestinal blockage and abscess
5/16 8 folfox treatments, (3 w/ ox, 5 w/o)
9/16 ostomy reversal
CEA <1.0 and clear scans since

User avatar
susie0915
Posts: 785
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 » Sat May 05, 2018 3:32 pm

Strong wrote:Hey y'all,

I'm new to the forum and this is my first post. I got here by googling "enema lars" and I've been so inspired by what I've read. I've been doing daily enemas since 11/16, so I'm probably just past the 500 mark. I learned how to do this without the amazing support of this group and I wish I'd connected with y'all a lot sooner! Anyway, I'm joining the Enema Club and I'm available to discuss the topic privately or publicly. Since everyone is different, maybe something in my experience can be helpful to someone.

I use the standard red bag although I changed the tubing to clear so I could monitor its cleanliness and check for air bubbles. I'm able to use the entire 2-quarts and as long as I do it daily without skipping it goes smoothly. I eat pretty much what I want but stay away from spicy foods for the most part. I occasionally take an Imodium but I've found that any problems I have with my enema process seem to be related more to stress and its effect on my nervous system than my diet, i.e vacation enemas go more smoothly than stressful work-week enemas. Further details available on request!

Quick summary of my background: I'm male and got my stage 3b diagnosis 10/15 at 44 years old. Chemoradiation followed by lar with ileostomy 2/16. I had an intestinal blockage and an abdominal abscess 2 weeks post-op leading to 3 weeks in the hospital and 6 weeks of TPN. Adjuvant chemo for four months ending 8/16, then ostomy reversal 9/16. Started enemas 11/16 and was able to return to work as a result.


Welcome to the group. Your story is close to mine as I also had a blockage 4 weeks after resection. In the hospital for 3 1/2 weeks with TPN. I also ended up having surgery to remove scar tissue causing the blockage and my surgeon decided to reverse my ileo so I wouldn't need surgery later. I did have to do adjuvant chemo without the bag, so that was fun. Alot of diarrhea with no rectum. I made it through. I finished chemo April, 2016. I didn't begin doing enemas until February 2017 after trying many things. It really is a game changer when you have LARS. There are many people that do them. Also there is a facebook group for LARS as well if you are interested. Alot of helpful people. Living with Low Anterior Resection Syndrome is the page title.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,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
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Strong
Posts: 7
Joined: Sat May 05, 2018 8:56 am

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

Postby Strong » Sun May 06, 2018 8:24 am

Thank you, Susan. It's so good to connect with others who are having a similar experience. Luckily I had an ileostomy during chemo. My blockage was at my stoma but was caused by the abscess. What a ride that was...I'm so glad that experience is behind us both and that we're here to share it.

Judy, even though I'm late to the party, I'd like to say how happy I am for you that you're able to get back to vacations, etc. So much about life with cancer doesn't allow a return to normalcy so it's wonderful to hear you've found some.

Traveling can be hard for me. My "procedure" takes a while, sometimes more than an hour, so hotel rooms (especially with kids) and in-law houses with one bathroom can be tricky. My solution is to do it in the wee hours. I've lost a lot of sleep but at least it doesn't inconvenience my family as much. My routine is to rise 2 hours before everyone else and try to be as quiet as possible. Not always easy. At home it works because of the way our house is laid out but we're moving soon and I've spent a lot of time thinking about how to manage it in the new house. I try not to give it too much space in my life but it's such a large and important part of my day that it's hard not to.

It's still amazing to me to find myself thinking about such a topic. I contemplate things like how high to hang my bag, how many "clicks" the valve requires to not leak, how long to leave the water on the stove for optimum temperature, how to explain my tardiness to a social function. The "normal" thoughts of a cancer survivor are strange enough, but...life can certainly throw you curves.

As hard as I try to make it so, my procedure isn't a perfect process, probably because my diet isn't uniform and neither are the stresses of life. I sometimes have a small trip to the bathroom later in the day, and sometimes the morning routine takes two or three hours instead of one. Am I done? Not yet. But I THOUGHT I was done...oh well. On my hardest days it can be exhausting, but it still beats letting nature take its course.

In the end I'm just happy to be here. I'll take these issues to be able to continue the journey.

John
47 year old male, DX at 44
10/15 DX rectal tumor T3N1M0
11/16 6 weeks chemo-radiation
2/16 LAR and ileostomy
3/16 intestinal blockage and abscess
5/16 8 folfox treatments, (3 w/ ox, 5 w/o)
9/16 ostomy reversal
CEA <1.0 and clear scans since


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