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

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

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

Postby JudeD59 » Wed Aug 02, 2017 4:59 pm

Sorry this is so long, but I feel the information might help other members.

As anyone who has followed my journey knows, I had most of my rectum removed, scored severe on the LARS syndrome test, and have been basically been a hermit trapped in my house since my reversal a year and a half ago. I have good control (thank you Kegal exercises during the time I had temp ileostomy!) but had wicked unpredictability. I tried a limited diet, food and poop journals, medications, bowel training, etc. but still would have days when I went 4-5 times and others when I went 10-12 times, no matter what I ate or what pills I took. I was pretty miserable.

My colorectal surgeon had no suggestions except Metamucil, which helped a bit but not nearly enough. My oncologist said to give it more time. A month ago I went to see my family doctor for my regular checkup. I've been seeing him for about 20 years and I trust him. He is the first doctor to listen to me describe the LARS issues and tell me that is no way to live. I had been taking a half of a Percocet at bedtime for back and knee issues and Ativan 1 mg. twice a day. He increased the Percocet to 1/2 to 1 in the morning for pain and to slow things down, upped the Ativan to 2 mg. twice a day also to slow things down, and told me to take 1/2 an Immodium in the morning. He said I could increase the Percocet and Immodium as needed. We also talked about daily enemas and a permanent colostomy, but I told him about all the issues I had with the ileostomy tearing my thin skin and we decided that was a last resort option. He also said that I'm a perfect candidate for medical marijuana once it is set up here in PA because of my back and osteoarthritis issues and he will prescribe it as soon as it's available.

So I started doing my fiber in the morning along with Percocet, Ativan, and a half Immodium. It did work to slow things down and I didn't have to go as often, but I was still pretty tied to the bathroom and had to be very careful of what I ate. Then in the evening, I would do fiber again, Percocet, and Ativan. But I still had that freaking crampy feeling like I had to go most of the time. And I still had sore butt from going so often. And as a bonus, my back and knee ached more from all the time spent on the potty.

One of my four daughters is starting graduate school in September to become a Physician Assistant and won't have much free time for a couple of years. She asked if we could take a family vacation before her life grew too crazy. Two of my daughters are married so there are eight of us who need to have schedules co-ordinated, flights organized, lodging booked, etc. We decided to spend two weeks in Jackson Hole, Wyoming so we could visit Yellowstone and Grand Teton National Parks. I was in a panic over the long flights, the long days spent in the car exploring areas with few bathrooms, and if my limitations would ruin the trip for everyone.

So with much trepidation, I decided to try the nuclear option--daily enemas.

You have to understand I used to be a very private person. I never pooped in a public restroom and the only people to see the back end of me were my husband and my gynecologist. That changed quickly once I got cancer. I had to give myself an enema before several of the procedures during treatment, so I knew I could do it. That didn't mean I wanted to, but I had the knowledge and ability.

I started two weeks before our trip. The first time I tried, I just emptied out a couple of Fleet enema bottles I already had and filled them with tap water. I laid on the bathroom floor and did the best I could. I couldn't get all the water out of them, but I did well enough that I had six straight hours without needing to go or even feeling that crampy need to go ache. It was great! Such a feeling of freedom.

I decided to go with disposable enema bags since I didn't want the worry or hassle of making sure everything was properly cleaned and sanitized. I also decided to move operations to my bed since I'm too old and creaky to get up off a hard tile floor. I put two disposable bed pads down on the bed, a couple of napkins just in case they are needed, I fill the bag with warm tap water until it's a little more than halfway full, and I hang it from an S hook attached to the headboard. I bought the surgical lubricant they use for rectal and gyn exams since I knew it wasn't sticky and didn't irritate me. I apply the lube to the end of the tube, lie on my side, use a hand mirror to make sure I'm inserting in the right place :shock: and I'm good to go. It takes me about five minutes to set up. Once I release the clamp to allow the water to flow, I keep one hand on the tube where it's inserted so it doesn't slip out and one hand higher up on the tube so I can bend it to slow or stop the flow if I feel crampy. Within five minutes, the bag is empty. I clamp it off so there isn't any leakage and then pull the tube gently out and cap it. I lay there for a minute or two, then get up and throw away the bag and put everything else away. I try to hold it in as long as I can as I walk around washing my hands and tidying. Then I spend about 15 minutes on the toilet emptying out. When it feels like I'm finished, I get up and walk some more. Sometimes that's all there is and sometimes I have to go back for a quick visit or two to empty the last bit. For about 15 to 30 minutes after that, I feel a little crampy as though more needs to come out, but nothing does. The whole process takes less than an hour.

I started a month ago. A week and a half ago, we flew to Wyoming. I had no issues on the plane whatsoever. We've been here 10 days and I have spent 12 hour days in the car exploring the area without once having to stop to poop. That would have been impossible a month ago. I've eaten so much food that I haven't had since my diagnosis-ribs, ice cream, spaghetti, hamburgers, french fries, strawberries, chocolate, etc. and everything stayed in nicely until my enema the next day. I've had some gas pains in the evenings a couple times which I feared were from the enema, but my daughters told me they were having the same issue---too much takeout, high altitude, disruption of regular eating habits, etc.

This vacation would have been vastly different if I hadn't started doing enemas. I would have been sitting at the resort instead of with my family as we rode a raft down Snake River, hiked for miles to see the hot springs and geysers, stood ten feet away from a momma moose and her two babies, and watched a herd of bison wander 15 feet away from our van. The only thing I've passed on was horseback riding through some trails and that was because of my back issues, not my poop issues. I ask for an hour of privacy in the morning while I drink my coffee, do my enema, and then shower. My family grabs breakfast, takes their own showers, and we are all ready to hit the road at the same time.

I never in a million years would have thought I would performing such an intimate task on myself and telling people about it, but then again, I never thought I would be emptying surgical drains full of bodily fluids or dealing with an open incision or handling a temp ileostomy or having numerous doctors stick their gloved fingers up the most private part of my body. Life changes and you have to change with it if you want to give yourself the best quality of life possible.

I know this isn't the answer for everyone, but for me, it's been a complete game-changer. Not only has it given me freedom from poop for 23 hours each day and ended that annoying constant have-to-go feeling I always had, but I feel stronger, more in control, and have gone from depressed desperation to looking forward to all I can do now that my life doesn't revolve around being near a bathroom. I don't have a problem with it psychologically. I just look at it as another daily task that needs to be taken care of like showering, brushing your teeth, or putting on your makeup. When I get home, I'll probably experiment more to see if evenings are better than mornings or if I can go longer than 24 hours comfortably, but for now, this is working perfectly for me.

I hope this post helps someone else and if you have any questions you'd rather not share on the board, feel free to pm me. I have two more days in this glorious place with my funny as hell family and then I fly home on Saturday. After that, I have weddings and showers that I had planned to RSVP negatively that will now be marked with a "Hell yes I'll be there!" I also bought tickets to a concert in September and I'm looking into writers' conferences that I can work into my schedule. I plan to make up for lost time.

Love to all of you from beautiful Yellowstone Park!
Judy
Last edited by JudeD59 on Thu Aug 10, 2017 2:07 pm, edited 2 times in total.
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

love3
Posts: 8
Joined: Tue Aug 01, 2017 1:06 pm

Re: I Have a Life Again!

Postby love3 » Wed Aug 02, 2017 5:24 pm

Thank you for sharing your story! I'm so happy for you. Enjoy exploring!
51 female
4/17 - Routine Colonoscopy-No symptoms
CEA before polyp removal 1.7, CT scans clear
5/17 - Another Colonoscopy to remove a flat lesion type polyp that could not be removed during original colonoscopy (special tools needed)-Diagnosis Stage 1
6/17 - Colon Resection due to abnormal cells found on polyp. 3/32 lymph nodes positive for cancer
New Diagnosis - IIIa (or possibly b)
8/14 - Port Placement and begin Xelox - 4 rounds

MissMolly
Posts: 440
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: I Have a Life Again!

Postby MissMolly » Wed Aug 02, 2017 6:46 pm

Judy:
Whoo Hoo ! Whoo Hoo !

Your quote has staying power: "Life changes and you have to change with it if you are going to give yourself the best quality of life possible."

That statement resonates with me. And I am sure that it will resonates with many others.

I am delighted that you have refound a sense of personal freedom in establishing a routine of a daily enema. Fellow poster TammyLyn blazed the trail in advocating the virtues of the daily enema for those with insufferable LARS.

I always flock to any new post that you have authored. "What does Judy have to say?," I wonder. Your writing style and first persona narrative is always informative and uplifting.

Enjoy the remainder of your vacation and time with family. Family is precious. I wish for you only the best.
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

ams5796
Posts: 2271
Joined: Fri Feb 06, 2009 10:07 am

Re: I Have a Life Again!

Postby ams5796 » Wed Aug 02, 2017 7:01 pm

That is GREAT news, Judy. I have been following along with Tammylayne and the enema gang for a while now doing daily enemas. I honestly don't think there is any other option for me other than getting another ileostomy. Even though I've been doing the daily enema most days for many years I still have gas pain from them. I have tried every trick in the book to alleviate the problem, but have had very little luck. Are you still taking the percocet, fiber etc while doing the enemas? Do you notice there is less gas pain if you eat lightly?





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

Soccermom2boys
Posts: 145
Joined: Tue Nov 10, 2015 10:29 pm

Re: I Have a Life Again!

Postby Soccermom2boys » Wed Aug 02, 2017 11:33 pm

Judy--so wonderful to hear that you are out there living life again! Made my heart smile to read this post as I know it has been a long time coming for you to feel in control of your life again and not worry about bathroom issues. Enjoy the remainder of your trip, it's so great how you all coordinated your schedules to get that special time in together. :D
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox
With these odds, how have I not won the lottery already?!

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

Re: I Have a Life Again!

Postby JudeD59 » Thu Aug 03, 2017 2:14 am

love3-Thanks! It's probably TMI for some members, butt if it helps one person, it's worth it.

Miss Molly-Hello, friend! About a week ago I sent a PM to Tammy telling her she is my hero and thanking her for all her advice and information about daily enemas on the board. So she was the first to know I'm the newest member of the enema club. Naturally, her reply was both sweet and helpful. By the way, your replies are so good, you should always post them twice. :lol:

ams5796-I'm still taking the morning Ativan, Percocet, and half of an Immodium. The Percocet not only slows things down, but I needed it for my back and knee for pain with all the riding in the car and hiking. While I was at home, I was still doing the fiber twice a day. I've gotten a bit lazy with it here and have missed some doses, but I haven't noticed any difference on those days. To be brutally honest, I had much worse gas before starting the enemas. That's another benefit I've noticed. After my reversal and before starting the enemas, I passed gas all day long and it was (this is hard for a lady like me to admit) horrible smelling. I couldn't believe how bad it was. But now, I hardly ever have gas and what I do pass doesn't smell at all. After I do the enema and most everything has cleared out, I bend forward for a few minutes on the toilet to put pressure on my intestines and force out any trapped air. On this trip, when I've had gas pains, I either massage my side to get it to release or elevate my feet higher than my butt (like on the dashboard once everyone else has exited the vehicle :oops: ). I also find that laying a heating pad on my stomach eases gas pains. I didn't have any problems with gas before the trip, so I really think it's the steady diet of restaurant food that's causing the few pains I'm having. I'll let you know how things develop once I'm home and eating more regularly. I know you've talked about your problems with gas pains from the enemas before. I hope you can find a solution so the enemas work for you on a regular basis.

Soccermom2boys-Thanks! Yes, it has been a long year and a half. Almost makes me wish I had some kind of fitbit type of device that counted trips to the bathroom just so I could have a tally. It probably would've overheated and broke though. I'm really blessed that my girls and their husbands still want to spend vacation time with us and we're having a wonderful time. After all they've been through starting with the terrifying news that their mom had cancer to helping me through all the treatments and holding their breath as they wait for scan results, it's nice to be able to give them an adventure full of laughter and happy memories.

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

ams5796
Posts: 2271
Joined: Fri Feb 06, 2009 10:07 am

Re: I Have a Life Again!

Postby ams5796 » Thu Aug 03, 2017 5:33 am

Judy,

Thank you for getting back to me. I'm so happy that you're vacationing with your family. I have three older children (29, 27 and 22) and vacations with them are precious. It's what we all worked so hard for, isn't it? Most folks feel like you do that they have much less gas when they do an enema. When I'm able to pass gas it's much easier to be around, :wink: but it's still a lot. Even with the pain the enemas are the best option for me also. I feel like I have my life back. I was asking about the percocet etc because I take one and a half percocets a day for spine pain from radiation. I wonder sometimes if that slows things down to cause gas. I have to keep trying things. I'm determined to get this to work.

Enjoy the rest of your vacation!

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

User avatar
susie0915
Posts: 531
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: I Have a Life Again!

Postby susie0915 » Thu Aug 03, 2017 1:31 pm

I am so happy for you. I have been doing the daily enema for the last six months. After trying lomotil, immodium, food diary, etc. Citrucel, cholesteramine, I went to the University of Michigan bowel control clinic. I told the doctor that I didn't have issues with
diarrhea, just frequency and never feeling fully emptied. He ordered a couple tests, suggested pelvic floor physical therapy and meeting with a dietician, which I did. But during the first visit, he asked if I ever tried suppositories or enema when I didn't feel I emptied myself. I had to do an enema for one the of tests he ordered, and felt great the whole day. I ordered an enema bag from amazon. Fill it with water, lay on my left side empty about 2/3 of bag get on toilet and empty. I then use the remaining water to make sure everything is cleaned out. The process with clean up takes about 30 minutes. I usually wait about an hour before I go anywhere to be sure there is no residual fluid to come out, then I'm good to go for the day. I do them everyday as it just makes the process much easier as stool doesn't build up. I asked the doctor if he had any problem with me doing everyday and he said he thought it was fine. Has become a part of my routine and really doesn't restrict me like before when I had to worry about where a bathroom was, or having to leave etc. I've also been able to eat as I don't have to worry about triggering a bowel movement. As a result, I've been able to gain back some of the weight lost during cancer treatment. It has made my life so much happier, and I've traveled with no problems. Just take with me. I wish I would've done this when I went on a cruise last august. I did have to stay on the boat a couple days and wasn't able to go on the long excursions. I recommend the daily enema for anyone who finds themselves with the issue of frequent small stools with no predictability. It does feel like I have life again.

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

Lee
Posts: 5287
Joined: Sun Apr 16, 2006 4:09 pm

Re: I Have a Life Again!

Postby Lee » Thu Aug 03, 2017 3:43 pm

Jude

I am so HAPPY for you. This is wonderful news. Sounds like you've got your life back.

CONGRATULATIONS :D

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!

ozziej
Posts: 215
Joined: Thu May 21, 2015 8:35 pm

Re: I Have a Life Again!

Postby ozziej » Fri Aug 04, 2017 9:21 am

Hey Judy, greetings from Down under. It is wonderful that you have finally found a routine that works for you, especially after everything you have been through. So happy for you. I'm happy to say that 2 years out from reversal i too have found what works for me. At the end of May I had a partial obstruction which was bad but good. Bad because it felt like I was in labour for 12 days, but good because I was prescribed new medication and started trialling a new diet which together work wonderfully. It's a miracle! No more crampy feeling like I need to go all the time, no more clustering, no more tenesmus, no sore bottom, MUCH less toilet paper :mrgreen: :mrgreen: . I now have totally normal bowel motions twice a day with no urgency or pain. As you say, having a life back again. Hope you had a wonderful holiday and wishing you all the best for the future :D
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

User avatar
horizon
Posts: 1434
Joined: Tue Apr 12, 2011 10:10 pm

Re: I Have a Life Again!

Postby horizon » Sat Aug 05, 2017 1:38 pm

That's great that you're finding something that works for you. Sounds like it was a much deserved holiday.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?

JJH
Posts: 164
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Enemas for LARS

Postby JJH » Sun Aug 06, 2017 12:26 am

Thank you for posting the details of your enema experience.

For your information, here is the link that goes directly to that post in case you want to share it with others later on.

Your post-link:
.
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58527&p=460791#p460791
.
DX 2012: Stage IIc
Locations: upper-rectum T4b + mid-sigmoid T4b
Surgery: Open LAR + temp ileo
TX: chemo/rad (28 days) + Xelox (3 cycles)
Ileo reversal
5 years surveillance
7/3/2017: Final 5-year report -
"complete remission ... cured'

stu
Posts: 613
Joined: Sat Aug 17, 2013 5:46 pm

Re: I Have a Life Again!

Postby stu » Sun Aug 06, 2017 3:27 am

Yippee. Delighted you have your freedom back .
Enjoy.
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

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

Re: I Have a Life Again!

Postby tammylayne » Sun Aug 06, 2017 12:07 pm

Hey Judy,,,,,thank you for the kind words. I am sooooo happy you have found your new normal, and that it works for you. After everything we have all been through, problems running to the loo is just not right!!!! I hope anyone suffering like we USED TO knows they have nothing to lose...by giving it a try. They can contact myself...you...or others that have found this to be the answer they were looking for. I think the stigma of the enema needs to go by the wayside. I long ago named us the Enema-ites.....LONG LIVE THE ENEMA!!!- :shock:
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."

User avatar
Rob in PA
Posts: 1972
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: I Have a Life Again!

Postby Rob in PA » Mon Aug 07, 2017 6:01 pm

Tremendous news Judy! Congrats and enjoy the wild west 8) 8) 8)

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED


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