Reversal Journal -- just had the surgery this morning.

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Maelleous
Posts: 82
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Reversal Journal -- just had the surgery this morning.

Postby Maelleous » Tue Aug 01, 2017 3:13 pm

I had my reversal surgery this morning. Around 8am. It is 4:10pm eastern and I feel pretty good so far. Stomach is acting a little queasy because they have me on a liquid diet. I thought it might be helpful to others to keep my log. I know others have done it on here, but everyone is different.

The docs told me it will be more difficult this evening, as they don't want to give me too much pain meds so I can have bowel movements. Either way, I will keep this thread updated.

My history was rectal cancer stage 3C, j-pouch was created. Had the bag since last October, did chemo, had cardiac arrest on 3rd round, did clinical trial for vaccine in March, just finished that a month and a half ago.

Did the gastrogaffin enema and a flex sig a week ago. Those weren't fun, but not as bad as I expected.
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: 108
Joined: Thu Mar 16, 2017 12:33 pm

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

Postby Basil » Tue Aug 01, 2017 3:22 pm

Thanks for documenting your reversal. I got an unexpected ostomy during surgery last night and will have the reversal done some time between six weeks and four months.
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)

User avatar
Maia
Posts: 2393
Joined: Fri Aug 24, 2012 8:00 am

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

Postby Maia » Tue Aug 01, 2017 6:20 pm

Congrats, Maellous!!
Keep chewing gum; chewing gum is to get your guts moving faster again. Just try to not chew with your mouth open, so you don't get extra air in the system.
Not kidding, just search this forum.
Smooth recovery wishes to you!

NHMike
Posts: 160
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Aug 01, 2017 6:39 pm

Any details on the cardiac arrest? Was it caused by the oxi? Good thing you had options with the vaccine.
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.

User avatar
Maggie Nell
Posts: 609
Joined: Wed May 27, 2015 1:57 am
Facebook Username: maggie nell
Location: Melbourne, Australia

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

Postby Maggie Nell » Wed Aug 02, 2017 6:01 am

Good one, Maellous!
May your recovery be strong, smooth and swift.

Maggie
in Australia
DX April 2015, @ 54
35mm poorly diff. tumour found upon emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
deranged LFTs April 2017
Liver U/S booked August 2017 :shock:

Maelleous
Posts: 82
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

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

Postby Maelleous » Wed Aug 02, 2017 6:12 am

Haven't passed anything yet, (morning here at hospital) but I feel it coming soon. I was only liquid diet yesterday. Feel decent, stomach hurts a little bit, but that is more hunger than anything else. I just went for my morning walk.

Thank you for the gum suggestion, I will see if someone here has any. Family won't be able to come back to visit me in the hospital until tomorrow.

For the person asking about the cardiac arrest. There is a less than 1% chance of 5-FU causing a spasm in your heart. I was seeing a local oncologist because I didn't want to drive to Cleveland Clinic Florida where I had all my other treatments 1.5 hours away.) I had chest pains on the second round but the local docs thought it was heart burn. The third round the chest pains were so bad (going by what my wife tells me as I have no memory of the month anymore) I had her take me to the hospital. When we got there it subsided and I was getting my pump off so told the oncologists about it. They sent me for an EKG and Echo, but the Echo was fine and the EKG was only slightly abnormal. They let me go home. That night we were watching TV in bed before going to sleep and she said I just shot up and rolled over. Thank god it wasnt an hour later or I wouldn't be here. She was able to do CPR from the 911 operator walking her through it. They zapped me 6 times, got me back, I had arrest a few more times on the way to the hospital, then was on ice for 4 days. 2 weeks later I went home and once again was blessed with no perm damage to anything. Note to anyone on here, if you have severe chest pains on Folfox, get it checked out immediately! The Cardio-Oncologist I see at Cleveland Clinic and the University of Pitt doctors said they shouldn't have let me go home. Needless to say I don't go to that local place anymore lol.
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!

NHMike
Posts: 160
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Aug 02, 2017 6:37 am

Thanks for the information. I'm on my third day of 5FU (oral) so your experience was a bit jarring to read about. Sounds like you're doing great now though you have the advantage of being quite young for this stuff.
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.

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

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

Postby Swirdfish » Wed Aug 02, 2017 6:55 am

I had my reversal quite a few months ago now. In my signature. No J Pouch. I fou nd the first couple of days after hospital was uncontrollable. 8 weeks after and id have accidents once every two weeks if I didnt take immodium or Metamucil combined with codeine. I work remote now ive been back at site for 2 months now. I fly to work for 2 hours one way then bus to and from work daily 40 minute round trips back to a camp I sleep at. At first I was really worried. But now I dont even seem to stress about the long work hours away from a toilet. Even without medication im almost normal with no issues. It maybe hard at first but it will get better. Good luck.
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

Basil
Posts: 108
Joined: Thu Mar 16, 2017 12:33 pm

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

Postby Basil » Wed Aug 02, 2017 7:31 am

Maelleous wrote:Haven't passed anything yet, (morning here at hospital) but I feel it coming soon. I was only liquid diet yesterday. Feel decent, stomach hurts a little bit, but that is more hunger than anything else. I just went for my morning walk.

Thank you for the gum suggestion, I will see if someone here has any. Family won't be able to come back to visit me in the hospital until tomorrow.

For the person asking about the cardiac arrest. There is a less than 1% chance of 5-FU causing a spasm in your heart. I was seeing a local oncologist because I didn't want to drive to Cleveland Clinic Florida where I had all my other treatments 1.5 hours away.) I had chest pains on the second round but the local docs thought it was heart burn. The third round the chest pains were so bad (going by what my wife tells me as I have no memory of the month anymore) I had her take me to the hospital. When we got there it subsided and I was getting my pump off so told the oncologists about it. They sent me for an EKG and Echo, but the Echo was fine and the EKG was only slightly abnormal. They let me go home. That night we were watching TV in bed before going to sleep and she said I just shot up and rolled over. Thank god it wasnt an hour later or I wouldn't be here. She was able to do CPR from the 911 operator walking her through it. They zapped me 6 times, got me back, I had arrest a few more times on the way to the hospital, then was on ice for 4 days. 2 weeks later I went home and once again was blessed with no perm damage to anything. Note to anyone on here, if you have severe chest pains on Folfox, get it checked out immediately! The Cardio-Oncologist I see at Cleveland Clinic and the University of Pitt doctors said they shouldn't have let me go home. Needless to say I don't go to that local place anymore lol.


We're at two spots of a similar journey. I am stage 3 andI just had mine installed (as I said above). I'm still in the hospital. No one said anything a j pouch so I assume I don't have one. Everything has gone well except I still hurt pretty bad when I move. Going to try a morning run all to stretch things out.
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: 160
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Aug 02, 2017 7:51 am

Basil wrote:We're at two spots of a similar journey. I am stage 3 andI just had mine installed (as I said above). I'm still in the hospital. No one said anything a j pouch so I assume I don't have one. Everything has gone well except I still hurt pretty bad when I move. Going to try a morning run all to stretch things out.


That's pretty hardcore.
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.

Maelleous
Posts: 82
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

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

Postby Maelleous » Thu Aug 03, 2017 8:04 am

Day 2: was uneventful. Ate a ton, drank some coffee even (surprised that they let me) and did laps around the hospital. They upgraded me to GI Soft. Meatloaf and Mashpotatoes and carrots were the best food I think I've ever eaten (after broth lol)

Still unable to go, but I think it will be soon... They said they might let me go home even if I don't have one. The surgeon said he will see what the next day brings.


Day 3: Just went this morning. Did a bunch of laps, drank more coffee and then during breakfast I knew it was time. Wasn't pretty and I see a bunch of what looks like old blood. Hoping that is just from the surgery and nothing to worry about. Waiting on the nurse to come and take a look at what I left and hopefully I'm good to go home today. I seem to have full control right now... surprised by that, from everything I have read it seemed like it would be very difficult. That might change though, we will see. I will keep this log updated.
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: 108
Joined: Thu Mar 16, 2017 12:33 pm

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

Postby Basil » Thu Aug 03, 2017 10:11 am

What was the pain level like compared to the resection? I would hope it would be a lot less, as they're not respecting anything.
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: 82
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

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

Postby Maelleous » Thu Aug 03, 2017 12:42 pm

@Basil -- I find it easier. I only took pain killers on the first day. On just Tylenol now. I wanted to avoid getting consitpated, as they want you to poo before you leave. It does hurt some when food passes through the stitched intestin and when you move certain ways, but not all that bad. I can't tell if I am just a lot tougher after all the things I have been through or if it is just that much easier, lol

Day 3: On other good news! I am being discharged! Just got the news! The blood they saw the Surgeon says is completely normal and will be that way for a few days. I had a second small bowel movement and it was actually somewhat rounded. I seem to have a lot more control than people report. When I had the resection I had major issues with passing mucus and a CONSTANT urge to go. When I had my cardiac arrest and was on ice for 4 days unconscious it seemed to magically fix the issue. However I still passed mucus about once per day. I think that kept my sphincter muscles working so might help me out some in the long run. Drove me nuts for a while there. Hopefully I am able to maintain control as things go on. Just happy to be going home. As most on this forum knows, hospitals are not good places to get rest!
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: 82
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

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

Postby Maelleous » Fri Aug 04, 2017 5:53 pm

Day 4: This has been a LOT tougher. I slept through last night with zero issues. Woke up once to pee (never can make it through a full night for as long as I can remember... tiny bladder)
Pain wise, I am fine without narcoics, in fact -- tylonal has been more than enough. I woke up, drank my coffee as I didn't have the urge to go and thought I would help spur it along. Walked my dog down the street (though a bit gingerly from the pain.) Ate some French Toast.

10:30am - first bowel movement came on, it was abrupt, I didn't have much warning and had to hurry to the bathroom. Had some slightly bloody (surgeon said was normal) very liquid poo. After that things seemed fine. Had another small bowel movement, was minimal warning again, but nothing to get too worried over.

12:00pm At lunch. Fried in olive oil in the pan some salmon on a white bun with tartar sauce and a little bit of cheese. Also had some crackers on the side. About 1pm I had a very urgent bowel movement again. These were followed roughly every half hour since.

The flood gates seem open with no stop in sight! I was so excited that I thought I was going to miss this grueling part of it, ugh! I took half an anti diarreah pill earlier then just took another full one. Still doesn't seem to be stopping it.

I had a bit of a calm and ate a small dinner of egg noddles, mostly plain with a tiny bit of butter and salt, as I didn't think I could handle more.

My poor legs and bottom feel numb from so much toilet time. This is going to be a long month.
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!

NHMike
Posts: 160
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Aug 04, 2017 6:18 pm

Thank so for the update. Many of us have the same thing to look forward to.
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.


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