Reversal Journal -- just had the surgery this morning.

Please feel free to read, share your thoughts, your stories and connect with others!
Jeez
Posts: 1
Joined: Fri Aug 18, 2017 11:19 am
Facebook Username: Jane brooks

Re: Reversal Journal -- just had the surgery this morning.

Postby Jeez » Sat Aug 19, 2017 7:00 am

You sound as though keeping a positive attitude Works well for you. Keep it up! I hope you sleep well tonight.

Maelleous
Posts: 108
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Reversal Journal -- just had the surgery this morning.

Postby Maelleous » Sun Aug 20, 2017 9:09 am

Thanks Jeez.

Day 17 - Unfortunately Saturday did not go so well for me.

Tip of the day: NEVER EAT MCDONALDS!

I am not a big fast food guy, but have a weakness from time to time. Had to take my dog in to get something checked out (skin rash) at the vet early. I decided it wasn't a good idea to eat before I left since it was an early appt and 25 mins away. Afterwards I was starving and decided to get a sausage egg and cheese on a bisket, I eat similar stuff at home so thought that would be ok around 10am. Ate very little for lunch as my stomach was starting to feel very unhappy. By 2pm I was full on diarreah. Took half an immodium. A few hours later it wasn't enough, took another. It subsided at night finally. I learned my lesson from eating that garbage. Never again.
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!

User avatar
susie0915
Posts: 550
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal Journal -- just had the surgery this morning.

Postby susie0915 » Sun Aug 20, 2017 11:09 am

It does take awhile to figure out what foods may affect you. And there can be no rhyme or reason sometimes you do okay eating something and other times really give you a bad day. Hopefully, it won't take you too long, but sounds like you've been doing pretty well. I'm sure you will continue to progress, but there still can be bad days now and then. But, I could have a bad day before cancer, we are just so focused on it now. Good Luck.

Susie
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

justin case
Posts: 4188
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Reversal Journal -- just had the surgery this morning.

Postby justin case » Sun Aug 20, 2017 3:54 pm

With little rectum left, (It takes a long time to stretch) I still wait to eat until around 11 AM, and sometimes later. I live in Houston, and had an engagement above Austin yesterday, so the drive was without food, until I reached my destination. No problem. I have made the mistake and eaten too early at a buffet in Louisiana, and tried to drive back to Houston. When you were a child did you ever count mile markers ?
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

Basil
Posts: 213
Joined: Thu Mar 16, 2017 12:33 pm

Re: Reversal Journal -- just had the surgery this morning.

Postby Basil » Sun Aug 20, 2017 8:08 pm

Where do you live in Houston? Just wondering as a fellow mostly rectumless traveler who, despite reading this thread, is counting the days until my reversal. I absolutely freaking hate the bag. I'm at the Katy freeway and Beltway 8. I work downtown and am already anticipating lovely moments sitting in bumper to bumper traffic trying to inch myself towards the Wilcrest exit before having a complete system failure. "Houston, we have a problem."
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

Maelleous
Posts: 108
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Reversal Journal -- just had the surgery this morning.

Postby Maelleous » Tue Aug 22, 2017 5:55 am

@Basil -- I promise you, there will be times where you will miss it in the early days of hte reversal, lol

Day 18 & 19 -- I've had a slight regression, nothing terrible but it has been a little more frequent with smaller poos coming out at times. I had family over for my mom's birthday and made a pot roast with grass fed beef, potatoes, carrots, and onions. I also made some mash potatoes on the side for loaded potatoes and green bean casserole. The morning I had a few issues, but nothing major. Then after that very large meal I had some issues in the evening, I popped a half of an immodium before family came to avoid incidents.

Yesterday I had some issues through the night and in the morning. I ended up taking a half of an immodium as I wanted to spend a portion of the day outside to watch the Eclipse. I was good until the evening.

Today I woke up with the urge to go, and it burns a wee bit, but over all, good enough I could take the dog on a walk. The previous days pre-McDonalds was a lot better, seemed to hit a bit of a rough patch. Going to drink some Metimucil (haven't been for almost a week) and see if that helps some.


On a side note: Anoyone post reversal get a really itchy butthole? I've been so itchy lately.
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!

justin case
Posts: 4188
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Reversal Journal -- just had the surgery this morning.

Postby justin case » Tue Aug 22, 2017 12:03 pm

Basil wrote:Where do you live in Houston? Just wondering as a fellow mostly rectumless traveler who, despite reading this thread, is counting the days until my reversal. I absolutely freaking hate the bag. I'm at the Katy freeway and Beltway 8. I work downtown and am already anticipating lovely moments sitting in bumper to bumper traffic trying to inch myself towards the Wilcrest exit before having a complete system failure. "Houston, we have a problem."

Fry road and Little York. I am lucky my travels keep me off the beast, I work off of Hempstead, and Gessner. Are you going to MD Anderson proper, or the Katy location ? I'm very familiar with your plight, as I avoid the Katy freeway like the plague.
I have been known to travel to the medical center, down Bellaire , for constant surveillance of fast food locations. Clean bathrooms for the most part ! If 610 wasn't so messed up right now, you might be able to cut through on the north end of town. On second thought, would the Westpark Tollway be of help ?
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

Maelleous
Posts: 108
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Reversal Journal -- just had the surgery this morning.

Postby Maelleous » Wed Aug 23, 2017 4:14 am

Day 20- Day started off with frequent urges to go, small, but formed. Later in the day I was good and overall I would say it was a good day.

I tried, per someone's suggestion, doing a smaller amount of metimucil with each meal. That def seemed to work really well!
Last edited by Maelleous on Thu Aug 24, 2017 9:51 am, edited 1 time in total.
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!

Basil
Posts: 213
Joined: Thu Mar 16, 2017 12:33 pm

Re: Reversal Journal -- just had the surgery this morning.

Postby Basil » Wed Aug 23, 2017 8:05 pm

justin case wrote:
Basil wrote:Where do you live in Houston? Just wondering as a fellow mostly rectumless traveler who, despite reading this thread, is counting the days until my reversal. I absolutely freaking hate the bag. I'm at the Katy freeway and Beltway 8. I work downtown and am already anticipating lovely moments sitting in bumper to bumper traffic trying to inch myself towards the Wilcrest exit before having a complete system failure. "Houston, we have a problem."

Fry road and Little York. I am lucky my travels keep me off the beast, I work off of Hempstead, and Gessner. Are you going to MD Anderson proper, or the Katy location ? I'm very familiar with your plight, as I avoid the Katy freeway like the plague.
I have been known to travel to the medical center, down Bellaire , for constant surveillance of fast food locations. Clean bathrooms for the most part ! If 610 wasn't so messed up right now, you might be able to cut through on the north end of town. On second thought, would the Westpark Tollway be of help ?
Regards,
Michael


Avoid the Westpark. If the Katy is bad, Westpark will be worse. I hate hearing stories about noting and tracking clean bathrooms on your commute but reality is what it is. I guess that's one thing I don't have to worry about with the bag.

I have most appointments/treatments at the main campus but have been to Katy a few times. Katy is closer to my house but I have to see my Onc on infusion days anyway (protocol for PROSPECT trial).
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

Maelleous
Posts: 108
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Reversal Journal -- just had the surgery this morning.

Postby Maelleous » Thu Aug 24, 2017 9:53 am

Day 21. -- decided to start a true log to see how often I am going "clustering" etc. 8 times in one day isn't terrible. Added back to a 1/3 of immodium twice a day, and metimucil before bed. Seems to help a lot. This is my log for those interested. The "-p" is when I go.

8/23/17
4:00am small normal formed -p
4:46am larger load, normal formed. -p
5:00am drank a small glass of Metimucil
5:40am small formed normal -p
7:05am bowl of cereal with milk
7:56am two smallish, normal formed. -p
9:44am almost reg poo, (medium-small) -p
10:15am ate some chips
11:04am much larger bowel movement -p
12:30pm ate a roast beef sandwich and some roasted potatoes
2:00pm took 1/3 of immodium
4:30pm dropped a small load -p
5:15pm Ate dinner, pasta and garlic bread.
9:00pm medium load -p
Drank Metamucil before bed.
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!

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

Re: Reversal Journal -- just had the surgery this morning.

Postby JJH » Thu Aug 24, 2017 1:57 pm

Day 21. -- decided to start a true log to see how often I am going "clustering" etc. ...

I like your new format with the "-p" annotation.

Maybe you could expand the notation with subscripts to show which type of poo it was?

https://upload.wikimedia.org/wikipedia/commons/9/9e/BristolStoolChart.png
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'

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

Kegel exercises

Postby JJH » Thu Aug 24, 2017 6:55 pm

Basil wrote:... I work downtown and am already anticipating lovely moments sitting in bumper to bumper traffic ...

Kegels. Think Kegels. If you're pre-reversal right now and stuck in traffic you can use this time to advantage by doing a few more Kegel exercises. It won't hurt and it might even help in the long term -- to maintain sphincter muscle tone.
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'

ozziej
Posts: 216
Joined: Thu May 21, 2015 8:35 pm

Re: Reversal Journal -- just had the surgery this morning.

Postby ozziej » Thu Aug 24, 2017 7:14 pm

Hi Malleous,
From one rectal reversalist to another, you seem like you are doing really well. I just wanted to clarify one thing though. From looking at your "blow by blow" diary, I would say that what you have is "frequency" rather than "clustering". Frequency is multiple times a day; clustering is multiple times in 1 to 2 hours, with a better definition being "having to return to the loo within 15 minutes of the previous visit". By this definition, on that day you had no clustering. The reason I point this out is that frequency is often better tolerated than clustering, especially when evacuation comes easily. Add in difficulty emptying, and things get more complicated. Add in frequency, clustering within that frequency, and incomplete evacuation and you have LARS. I know this sounds very pedantic, but as a researcher as well as a rectal cancer survivor I'm keen to get people to be accurate in describing their symptoms. Research is just starting to touch the sides of post surgical functional outcomes for rectal cancer survivors, so to get any sort of accurate research findings we need accurate definitions. One reason research into post low anterior resection functional outcomes has been lacking is because the studies use different definitions and different measurement tools, so you can't compare apples with oranges... rant over...best wishes for a continued upward trajectory.. :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!! : )

justin case
Posts: 4188
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Reversal Journal -- just had the surgery this morning.

Postby justin case » Fri Aug 25, 2017 2:06 pm

Basil wrote:
justin case wrote:
Basil wrote:Where do you live in Houston? Just wondering as a fellow mostly rectumless traveler who, despite reading this thread, is counting the days until my reversal. I absolutely freaking hate the bag. I'm at the Katy freeway and Beltway 8. I work downtown and am already anticipating lovely moments sitting in bumper to bumper traffic trying to inch myself towards the Wilcrest exit before having a complete system failure. "Houston, we have a problem."

Fry road and Little York. I am lucky my travels keep me off the beast, I work off of Hempstead, and Gessner. Are you going to MD Anderson proper, or the Katy location ? I'm very familiar with your plight, as I avoid the Katy freeway like the plague.
I have been known to travel to the medical center, down Bellaire , for constant surveillance of fast food locations. Clean bathrooms for the most part ! If 610 wasn't so messed up right now, you might be able to cut through on the north end of town. On second thought, would the Westpark Tollway be of help ?
Regards,
Michael


Avoid the Westpark. If the Katy is bad, Westpark will be worse. I hate hearing stories about noting and tracking clean bathrooms on your commute but reality is what it is. I guess that's one thing I don't have to worry about with the bag.

I have most appointments/treatments at the main campus but have been to Katy a few times. Katy is closer to my house but I have to see my Onc on infusion days anyway (protocol for PROSPECT trial).

Some live with the bag just fine, I had mine for 3 weeks. No matter how long you have had it, the reversal is not the problem, it's the stretching of your rectum that takes time. If you wait a year,or if you do it now your connect, needs to learn how to accommodate waste and stretch. There is no bottom cache, and there will never be, until you stretch what you have left. On another note, Treatment is expensive, and getting things done within an insurance fiscal year, may help to avoid a massive out of pocket cost next year .
Regards,Michael
PS I hope the storm doesn't hamper you too much, although I've had a condo on Wilcrest before, and flooding is a common thing. Please don't ignore warnings in your area !
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

User avatar
susie0915
Posts: 550
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal Journal -- just had the surgery this morning.

Postby susie0915 » Fri Aug 25, 2017 3:23 pm

I had my bag for 4 weeks. Due to a bowel blockage and needing additional surgery, my surgeon decided to reverse at the same time. Probably made it tougher during chemo but I made it through. I waited 14 months after reversal and went to the bowel control clinic at University of Michigan. The Dr. did a couple of tests (anorectal manometry & defecography ). He recommended pelvic floor physical therapy(this is not normal physical therapy. The therapist stretches your rectum manually as well as has you do specific exercises) and consulting with a dietician. Both of these were quite helpful. My issue was never feeling totally emptied so I went quite often.He also recommended using laxative daily, suppositories, or daily tap water enema. I didn't want to use the laxative as it would loosen stool and I had no control of when I would need to have a BM. Since having to do a tap water enema for one of the tests, I found that to be quite simple. It gave me control of when I emptied my bowels, a whole day of no bowel movements after, and not being afraid to eat. Just know, if down the road things do not improve to your liking there are options that can help you lead a fairly normal life. I waited over a year before incorporating the enema into my daily routine. It takes about 30 minutes and becomes quite simple once you have a routine. You seem to adjusting quite well to your new rectum, so you may not need further medical help. Just don't be afraid to think outside the box.
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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