Reversal Journal -- just had the surgery this morning.

Please feel free to read, share your thoughts, your stories and connect with others!
Maelleous
Posts: 84
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

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

Postby Maelleous » Tue Aug 08, 2017 1:16 pm

@C2WAVE2 You sound like me. I haven't had a bowel movement yet today (stomach is getting that familiar grumbly feeling). I have been careful what I eat, but have felt mainly just dehydrated today. Throat has been dry, been drinking plenty I would think though.



Question for those who have gone through this already: when the inevitable really bad bowel movements seem to start, do you pop an immodium right away or let it ride and save it to sleep at night? That is kind of what I had been doing, but trying to figure out the best route to go.
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!

Maelleous
Posts: 84
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

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

Postby Maelleous » Wed Aug 09, 2017 4:59 am

Day 7 Day 7 was vastly improved. I didn't feel the need to go until very late in the day. I felt that (getting familiar) stomach grumbling feeling later in the day and thought the flood gates were coming. I decided to call the doctor's office and get their opinion. Spoke with the Surgeon's resident doctor who is very good and I like. He assured me that everything is normal and recommended that I take an immodium before dinner and before breakfast each day while my body adjusts. He told me that if that works to do that for 2-3 weeks then start scaling back. He also said the morning metimucil is good but if I start having some issues passing, to slow it down to 1/2 a glass. Also said to make sure I am drinking a lot of water.

I took another immodium before dinner and that night I had two smallish bowel movements, both fully formed! =)

I slept good through the night. This morning I had another smaller bowel movement, fully formed. My bum has been weirdly itchy though... not sure what that is about. I feel closer to normal than I have since this started, very nice feeling!
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!

Maelleous
Posts: 84
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

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

Postby Maelleous » Thu Aug 10, 2017 5:28 am

Day 8: The 2x's does of immodium are still doing better. Day 8 was pretty good overall, except I did feel a little stopped up but the morning went well. Actually messed with some stuff in my yard, as I had some energy. Ate a piece of toast and an egg for breakfast. Had some salmon dip and crackers for a snack. Then for lunch ate some leftover chicken piccata and pasta. After lunch I passed several small, close to normal, poos. (Did immodium after breakfast and Metamucil after I woke up.)

Around 3:30-4:00 I got that, not so good feeling, and started going more frequently. It wasn't nearly as bad as previous days. I took another immodium and ate dinner. Dinner was breaded haddock from cracker barrell with mash potatoes and baby carrots (steamed.) It got bad for a bit, but seemed to pass around 6:30. A few hours later I had to go a couple of more times. Probably went 20 times or so, so not my best day. The urgency and the pain with going was significantly better than previous days though.

Slept ok through the night. Woke up today with the urge to go, it was pretty loose. Then went again and it was full on diarreah. Took another immodium and sipping on a metimucil while I type this. Thought I had finally found a way to get to a good place, but it is going to continue to be up and down, even with the immodium unfortunately. I gotta keep in mind though I am only a week and a day out and still VERY early in the process.
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!

Swirdfish
Posts: 251
Joined: Sun Jun 19, 2016 3:57 am

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

Postby Swirdfish » Thu Aug 10, 2017 7:56 am

Keep going few more weeks. I dont get afraid anymore to fly to and from work or public transport. And work wise a toilet is usually far away. Night times seem to be the go for me with still quiet a few trips. It will get alot better
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

susie0915
Posts: 33
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter

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

Postby susie0915 » Thu Aug 10, 2017 9:04 am

I went through this for over a year. Never consistent or knew when I would start going back and forth to the bathroom for a few hours. Made is very hard to plan events. Last summer I missed so many days during my golf league because of frequent bms. A port a potty is not the best place to be when this is happening. Lol. My gastro just kept suggesting Citrucel and try to cut back on immodium and lomotil, as that what can make your stools hard which won't allow you to empty all at once. After trying so many things, I went to University of Michigan bowel control center and the gastroenterologist there suggested enemas or suppositories when I don't feel emptied out. They also prescribed pelvic floor physical therapy and working with a dietician, which I did. I tried both and found the enema worked best and really didn't take much time. As I began to research more, I found that many who have had their rectum removed do daily enemas. I talked to the dr. and U of M and he said he had no problem with daily tap water enemas. I have been doing them since February and it has changed my life dramatically. I've been able to gain weight I lost during treatment, plan outings, travel, not be afraid to eat without the fear of worrying about where or when I will be in the bathroom. I tried for over a year after reversal and it just was too stressful and wasn't getting better even though I would have good days, the bad were very restriciting. Some are able to get back to somewhat normal with just Metamucil or immodium, but I wasn't able to. The daily enema takes me approx. a half hour a day and gives me my whole day to do whatever I want until the next enema. Something to think about in the future, but you are still very early in the game. Good Luck
57 yr old mother of 3 adult children
5/15 Diagnosed with stage 2A rectal cancer
6/15 began 5 weeks of radiation/xeloda
9/15 Surgery to remove most of rectum
10/15 Bowel blockage. 3 1/2 weeks in hospital.
Dr. decided to reverse ileostomy since he
had to do surgery to repair blockage. c-diff infection
12/15 6 rounds of xelox
5/16 Clear CT lung scarring/inflammation
4/17 CT watching small 4mm lung nodule thinks is scar tissue
7/17 no change in 4mm lung nodule
Currently NED

Maelleous
Posts: 84
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

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

Postby Maelleous » Fri Aug 11, 2017 6:47 am

Day 9 Overall not a terrible day. I slept badly (not do to the reversal) dog woke me up early and I stayed up later than I should, so was tired a good chunk of the day. Thankfully, for whatever reason, I seem to always sleep through the night with no urges to go. My active time seems to be the mid-afternoon. I had a bit of a bad spell from about 2pm to 5pm but it was significantly better than previous bad bouts. After dinner (salmon, pasta, and a little bit of couscous), I was hungry before bed so decided to risk crackers and cheese. I had no bad after effects. I had a bisket and an egg for breakfast that morning and my leftover crackerbarrel (haddock, mash potatoes, and baby carrots). My body didn't seem to like the Cracker Barrel, but like I said, it wasn't nearly as bad as previous days.

Today I woke up feeling great. Slept good, stomach is settled. Just ate a bisket and some scrambled eggs (even risked a tiny bit of cheese) so we will see. I forgot to drink my metimucil so going to do that in an hour or two. Also haven't taken immodium yet, as my stomach wasn't grumbly so didn't want to do it. Hoping today ends up being a good day. I just hate that you can't tell. It starts off good and innocent enough and then can go downhill real fast.

@Susie -- thank you for the advice. I'm hoping I won't need the daily enema, I feel like my recovery is coming faster than most, so hoping this positive trend continues. It has only just been over a week and the days seem to be slightly improving most days. I am sure I will have bad days here and there going forward, bu if they are few and far between a few months from now, I can live with that!
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!

Swirdfish
Posts: 251
Joined: Sun Jun 19, 2016 3:57 am

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

Postby Swirdfish » Fri Aug 11, 2017 7:50 am

Mael.

In your signature what do you mean semi clean margins. Are you an R0 R1 or R2 on pathology?
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

susie0915
Posts: 33
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter

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

Postby susie0915 » Fri Aug 11, 2017 1:22 pm

He's it sounds like you are doing well. Even with the daily enema can have bad days now and then, I don't very often but have 2-3 in the past six months. But even before the cancer could have a bad day here and there. We still can contract viruses or have weird reaction when we eat. I'll pray you keep improving.
57 yr old mother of 3 adult children
5/15 Diagnosed with stage 2A rectal cancer
6/15 began 5 weeks of radiation/xeloda
9/15 Surgery to remove most of rectum
10/15 Bowel blockage. 3 1/2 weeks in hospital.
Dr. decided to reverse ileostomy since he
had to do surgery to repair blockage. c-diff infection
12/15 6 rounds of xelox
5/16 Clear CT lung scarring/inflammation
4/17 CT watching small 4mm lung nodule thinks is scar tissue
7/17 no change in 4mm lung nodule
Currently NED

susie0915
Posts: 33
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter

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

Postby susie0915 » Fri Aug 11, 2017 1:22 pm

yes itt sounds like you are doing well. Even with the daily enema can have bad days now and then, I don't very often but have 2-3 in the past six months. But even before the cancer could have a bad day here and there. We still can contract viruses or have weird reaction when we eat. I'll pray you keep improving.
57 yr old mother of 3 adult children
5/15 Diagnosed with stage 2A rectal cancer
6/15 began 5 weeks of radiation/xeloda
9/15 Surgery to remove most of rectum
10/15 Bowel blockage. 3 1/2 weeks in hospital.
Dr. decided to reverse ileostomy since he
had to do surgery to repair blockage. c-diff infection
12/15 6 rounds of xelox
5/16 Clear CT lung scarring/inflammation
4/17 CT watching small 4mm lung nodule thinks is scar tissue
7/17 no change in 4mm lung nodule
Currently NED

Basil
Posts: 117
Joined: Thu Mar 16, 2017 12:33 pm

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

Postby Basil » Fri Aug 11, 2017 2:28 pm

My reversal is scheduled for September 25. After that I am done! Next appointment will be scans in a year.

Dr. Is hopeful that I might have a bit of an easier time without having received radiation. Who knows. One more challenge to face! Thanks all for sharing your experiences.
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 ostomy
pathological complete response
NED
adjuvant chemo cancelled
reversal scheduled 9/25/17
(praying I don't have to add on from here)

NHMike
Posts: 166
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Aug 11, 2017 2:39 pm

Basil wrote:My reversal is scheduled for September 25. After that I am done! Next appointment will be scans in a year.

Dr. Is hopeful that I might have a bit of an easier time without having received radiation. Who knows. One more challenge to face! Thanks all for sharing your experiences.


I hope Ned stops by when you're done and sticks around for a long time.
Mike in NH: Rectal Bleeding biopsy June 23, Diagnosed Stage 3B rectal cancer late July 2017 via MRI.
T3, N1b, M0.
Started Xeloda + Radiation 07/31/17, to continue until 09/07/17.
CEA before treatment: 2.7. CEA after 14 treatments 1.9.

susie0915
Posts: 33
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter

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

Postby susie0915 » Fri Aug 11, 2017 3:44 pm

Yes good luck with your reversal. I'm sure you will be good.
57 yr old mother of 3 adult children
5/15 Diagnosed with stage 2A rectal cancer
6/15 began 5 weeks of radiation/xeloda
9/15 Surgery to remove most of rectum
10/15 Bowel blockage. 3 1/2 weeks in hospital.
Dr. decided to reverse ileostomy since he
had to do surgery to repair blockage. c-diff infection
12/15 6 rounds of xelox
5/16 Clear CT lung scarring/inflammation
4/17 CT watching small 4mm lung nodule thinks is scar tissue
7/17 no change in 4mm lung nodule
Currently NED

Basil
Posts: 117
Joined: Thu Mar 16, 2017 12:33 pm

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

Postby Basil » Fri Aug 11, 2017 5:06 pm

NHMike wrote:
Basil wrote:My reversal is scheduled for September 25. After that I am done! Next appointment will be scans in a year.

Dr. Is hopeful that I might have a bit of an easier time without having received radiation. Who knows. One more challenge to face! Thanks all for sharing your experiences.


I hope Ned stops by when you're done and sticks around for a long time.


Thanks - my surgeon says I am NED with low risk of recurrence! Path report has a whole lot of zeros in it.
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 ostomy
pathological complete response
NED
adjuvant chemo cancelled
reversal scheduled 9/25/17
(praying I don't have to add on from here)

Maelleous
Posts: 84
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

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

Postby Maelleous » Sat Aug 12, 2017 11:56 am

@swirdfish --that was just my own terminology. I am not sure what the R status was, but assuming it was clean. Here is what the notes from the doc said:

9/27/16 - MRI of the pelvis, showed a 4 cm tumor, in the mid rectum, stopping 4 cm above the anal verge, no abnormal adenopathy seen, this was staged as T2, N0, M0 rectal carcinoma.
10/25/16 - Per MDT consensus, patient underwent laparoscopic/APR, loop ileostomy, operative report showed mid rectal cancer with tumor above peritoneal reflection.
10/25/16 - rectal specimen showed moderately differentiated adenocarcinoma with ulceration, 2.5 cm, extends transmurally and reaches perry intestinal adipose tissue. Radial margin is located less than 1 mm from carcinoma, lymphovascular invasion seen, perineural invasion seen, 9 of 38 lymph nodes positive for metastatic adenocarcinoma. On mesenteric tumor deposits seen, stage IIIc, adenocarcinoma of the rectum, pT 3, pN2 B, p.M0. Microsatellite stable, K-ras, NRAS, BRAF testing shows no mutation.
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!

Maelleous
Posts: 84
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

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

Postby Maelleous » Sat Aug 12, 2017 12:00 pm

Day 10 -- def my best day yet. I had some issue in the morning time with the urge to go, but nothing would pass. After lunch I had a short bout of loose stool with some urgency but after two visits it seemed to pass with the help of half an immodium.

Made myself some homemade chicken noodle soup for dinner, was quite good. I also drank a small amount of juice and even ate a little bit of snack food with no issues. It def seems to be improving. I didn't do the metimucil as I didn't feel I needed it. Hoping this positive trend continues!
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!


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