Reversal Journal -- just had the surgery this morning.

Please feel free to read, share your thoughts, your stories and connect with others!
C2WAVE2
Posts: 24
Joined: Sun Apr 23, 2017 3:22 pm

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

Postby C2WAVE2 » Sat Aug 05, 2017 5:42 am

Maelleous and all,
I'm a day behind you, I had my reversal on Wednesday, the 2nd, and got released
, last night, Friday evening, the 4 th.

I had hard time urinating after op, but finally after 8 hours i started to go. I know op
Shouldn't effect that, except maybe the anesthesia.
Pain was not near as bad a original resection, although I had 8 inch cut n origiNal.

Same story on liquids, and then once I passed gas, took me a full day to do that,
I was able to eat solid foods.
My first bowle movement was about 6 hours later, and looked pretty good, brown,and not too watery.
However after that I got diaria, and now I'm having mostly bloody water. I was on here to see
If that is normal. I glad to see some blood is normal. I didn't talk to dr about that, just what to eat, and
Wound.

My pain is a lot worse this morning, and wonder if that is just because the pain meds wore off,
I probable Pop one soon, and wait it out, hope things get better today.

Have a good day Chuck
4/24/17. 55yr Male, Dx RC near Retcum/Sigmoid junction
O4/28/17 Ct
O5/04/17 MRI
Prelim. T1 N0 M 0 CEA 3.2
O5/23/17 Surgery, LAR 4.5" incision to remove tumor Temp Ileostomy
6/1/17 Pathology report 6.5 x 4.3 x 1.7 cm tumor, Adenocarcinoma,
Moderately to Poorly Differentiated , 0/27 Lymph, T2N0M0
08/02/17 Ileostomy Reversal

Maelleous
Posts: 105
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

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

Postby Maelleous » Sat Aug 05, 2017 6:42 pm

Day 5: Mostly Misery. Before bed I broke and took a full immodium and half a pain killer. I didn't need it so much for the pain as I did for hoping it settled my colon down. My bottom hurt so bad from going so many times and the muscle spasms I felt in my colon as I went over and over. I slept through the night with no issues. Woke up feeling ok. I drank a lactose free milk, banana and peanut butter shake I made. Went, and it was mildly formed. Ate a small waffle an hour or two later. Drank some black cherry juice hoping it will help settle the inflammation. Was good for several hours. Things started going downhill from there. Had some very unconformtable bowel movements with very little notice, was literally running to the bathroom.

As lunchtime came, I was afraid to eat, as I didn't want more coming and it was so uncomfortable, I felt like my stomach was convulsing as I went, and I almost felt a tiny bit naeseas I went. I took an immodium at some point and half a painkiller and that seemed to help a little. Around 2pm I ate some smoked oysters (probably a terrible idea) from the can and some crackers. I went every 15mins to 30mins for the next couple of hours. I was so exhausted from all this that around 430pm I fell asleep on the couch. I woke up, wife eventually convinced me to eat. I had a small amount of chicken noodle soup and crackers. Had one, not pleasant bowel movement, but have since gone over and hour without any urges. Took another half a pain killer and a full immodium as I plan to go to bed soon.

Hopefully I can make it through the night again and will re-evaluate what I eat when I wake up. Been trying to stay hydrated as I have felt a bit dehydrated from going so much. I don't go much when I do go, it is mostly just liquid. Been gassy and burping a lot. Going to try and eat smaller more frequently as is suggested. This is brutal. I never thought I would miss my bag!

Anyone can give me any advice, encouragement, times you recommend taking immodium, how much, anything to help getting this under control would be greatly appreciated. I'm too tired and miserable to search the forums, as I know it is likely there. Thank you.
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: 105
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

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

Postby Maelleous » Sat Aug 05, 2017 6:44 pm

Hi Chuck,

Yes the bloody water is normal. Also so is the unrinary issues from the anesthesia, usually takes me a week to get back to normal. Also remember when your colon gets very inflammed from constant going it will push against your prostate (for men) and your bladder.

Good luck, I wish I could tell you it gets easier, and I hopefully for you it does!
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: 200
Joined: Thu Mar 16, 2017 12:33 pm

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

Postby Basil » Sat Aug 05, 2017 6:54 pm

Sorry to hear about all your shitty symptoms. I appreciate you taking the time to chronicle your journey for those of us facing the same thing in the near future.
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

Lee
Posts: 5185
Joined: Sun Apr 16, 2006 4:09 pm

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

Postby Lee » Sat Aug 05, 2017 7:06 pm

Maelleous wrote:Day 5:
Anyone can give me any advice, encouragement, times you recommend taking immodium, how much, anything to help getting this under control would be greatly appreciated. I'm too tired and miserable to search the forums, as I know it is likely there. Thank you.


I don't have any real advice as I have the permanent bag, butt from what I understand, it's just gonna take time. From what I understand, the first few weeks are "rough". Then it will start to get better. You have to look at it in terms of months. There will be up and down days, butt over time you will see an improvement.

Keep a diary of what food you eat and how it will effect you. There is always the BRAT diet. Banana, rice, apple, toast. That is suppose to help a lot. Did you your surgeon mention anything about eating a low fiber diet?

Hang in there.

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!

Swirdfish
Posts: 266
Joined: Sun Jun 19, 2016 3:57 am

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

Postby Swirdfish » Sun Aug 06, 2017 12:06 am

I agree with Lee. The first couple of days are hell. Take immodium codiene and Metamucil for bulk is what i do. Just not too much. I usually take one of each in the morning and that's it. Now i usually take nothing. I'm pretty normal now but I'm about 3 months out. U should start to get better after week 2 up to week 8 with a couple of accidents and alot of clustering. But as time goes by it will get alot better I hope. Now i sont get much clusterinv and my accidents dont exist touch wood. Hold in there.
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

Swirdfish
Posts: 266
Joined: Sun Jun 19, 2016 3:57 am

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

Postby Swirdfish » Sun Aug 06, 2017 12:37 am

Swirdfish wrote:I agree with Lee. The first couple of days are hell. Take immodium codiene and Metamucil for bulk is what i do. Just not too much. I usually take one of each in the morning and that's it. Now i usually take nothing. I'm pretty normal now but I'm about 3 months out. U should start to get better after week 2 up to week 8 with a couple of accidents and alot of clustering. But as time goes by it will get alot better I hope. Now i sont get much clusterinv and my accidents dont exist touch wood. Hold in there.


P.S I also eat whatever I like. Always have. :) hehe
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

tarheelmom
Posts: 158
Joined: Mon Mar 07, 2016 5:55 pm

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

Postby tarheelmom » Sun Aug 06, 2017 9:45 pm

The first few weeks after the reversal were quite challenging. I avoided pain killers and immodium. I was afraid that I would "over correct" and would be in a pendulum state of too much or too little pooping. I wanted my body to try to "settle" into its new normal with as little intervention as possible (other than diet and Metamucil). There were certainly days were I could barely walk because my butt was so sore (raw and bleeding). I found that smearing on gobs and gobs of Vaseline (or equivalent) and then just wiping the top layer provided a tiny bit of relief. I kept a log of my pooping, but there seemed to be no pattern or cause/effect relationship. Some days I would poop 30-40 times and other days would be zero. There were certainly days when I wanted the ostomy back. I know it's really hard when all you do is run to the toilet throughout the day and night, but it does get better with time - at least that's my experience. Not like the way it was before but certainly better than the first few months after the reversal. I also found that pelvic floor physical therapy helped quite a bit. It's a little more involved than kegels, but it made a noticeable difference for me. I hope you rebound quickly.
52 y at dx, mom to 4
DX: RC on 2/22/2016
Stage I, T2N0M0, 0/32 LN
23 mm x 7 mm moderately differentiated invasive adenocarcinoma
3 cm from anal verge
4/12/16: ULAR, TME, & temp ileostomy
6/14/16: ileo reversal

AbbyDoo
Posts: 131
Joined: Wed Jun 29, 2016 2:25 am
Location: So.Ca.

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

Postby AbbyDoo » Mon Aug 07, 2017 1:55 am

I will throw in my 2 cents worth.
Keep your food boring and bland. Stick with easy to digest food like mashed pototoes, oat meal, toast,plain pasta ya get the Idea? Introduce new foods one at a time so you know what to avoid. I think the longer you keep your food boring and bland the faster your colon will relearn its job.
It was a very difficult surgery for me to recover from. First week after surgery I thought was easy, second week things went to chit. It took me about six months to start living life again.
A bath tub is a wonderful thing when your ass is burning and sore. The hot water will relax your mussel and slow down the cluster a bit.
This is a long hard one to recover from. Measure your progress in weeks not days. Soon you will notice the cluster getting farth apart then every other day, ones a week and so on.
Hang in there it gets better.
53 yrs old
4/30/15 colonoscopy Mass found
5/21/15 staged 3 C rectal cancer
7/3/15 finished xeloda and radiation 28 rounds
9/30/15 LAR
10/29/15 picc line installed
11/2/15 start chemo 5 fu Oxaliplatin
3/7/16 Finish Chemo
4/29/16 Ileostomy Reversal.
7/13/16 colonoscopy clear.
CRC survivors know there Sh%t

Maelleous
Posts: 105
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

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

Postby Maelleous » Mon Aug 07, 2017 4:45 am

Day 6: Much easier day. Before bed I had taken an immodium and a 1/2 a oxycodone and make it through the night with zero issues. I woke up in the morning with a slight urge to go but nothing came out. Ate a half of a banana as I woke up hungry. For breakfast I did an English muffin with some salmon dip/spread that the ingredients seemed safe for. Later I ate a small amount of soup. Then a very small turkey sandwhich plain with a little mayo/mustard. Stuck to water all day, then had a V-8 late in the day. For dinner I ate chicken parmasean (no parmasean) but just chicken, tomato sauce, white angel hair pasta noodles, and some canned green beans.

Was finally able to have a bowel movement. Was excited to see they were somewhat rounded. Felt like I was going forever to only pass a couple of smaller rounded droppings. I went a couple of times over the next couple of hours. It was difficult to go and dry and felt a bit painful (not worrisome painful, just the unpleasant feeling.) I still get a bit of spasm near my ileostomy muscle site when I am going and that part hurts. Going to try some Metamucil in the morning.

I was really tired a good chunk of the day. I almost never take naps but fell asleep on the couch early in the day and then just before dinner I was watching a movie with my wife and barely made it 10mins in. Went to sleep slightly before my usual bedtime as well. Probably from all the difficulty the day before and the lack of a nutritionist diet is taking a toll.

Side note: Weird thing. Did/does anyone else get goose bumps when they go at times?
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: 105
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

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

Postby Maelleous » Mon Aug 07, 2017 4:50 am

All - thank you all for your kind words and advice.

I really hope I am able to get back to a healthy diet in short order. I am hyper-paranoid about the cancer coming back and know diet can play a role. Seems like everything safe to eat is linked to rectal cancer. Plus I worry about the constant inflammation in the rectum from going so much now too.
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: 266
Joined: Sun Jun 19, 2016 3:57 am

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

Postby Swirdfish » Mon Aug 07, 2017 5:49 am

Be careful of the oxy. Panadene forte will do just as well and way less addictive.
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

Maelleous
Posts: 105
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 4:25 am

Day 7: started off great, ended horribly - I started off the day really well. I slept well, and woke up feeling better than I had since I got home. i decided to try the Metimucil. It seemed to help I think. After a few hours I had my first bowel movement and they actually seemed somewhat well formed (at least compared to what I had been used to.) I went a bunch of times, like every 1/2 hour after lunch time. I ate an English muffin and an egg for breakfast. Then ate some crackers and salmon dip (very plain dip.) Then later I wasn't real hungry but had some chicken noodle soup and a piece of white toast.

The bowel movements were difficult, I honestly imagine it is what women feel like giving brith. I went several times, and it seemed to be a decent amount, with as little as I have been eating, I have no idea where it all it was coming from? Around 3pmish I noticed it started becoming more urgent, less and less notice. I probably should have taken an immodium at this time. Around 4:00 the floods gates opened. Everytime I thought it was done more would come and I had maybe 10 seconds notice, barely made it to the bathroom each time. This lasted for about 3 hours. I went probably 30 times in 3 hours. I am honestly clueless as to what spawned this, as I ate very bland and hardly anything for lunch. I was begging to have my bag back during this time it was so rough. I broke and took half an oxy, as I was hurting and wanted to get stuffed up. Around 7pm I took an immodium too. I was starving and decided after I thought it finally had subsided had some plain pasta and applesauce. About 2-3 more bouts happened and around 10pm I finally fell asleep. I woke up 1-2 times to pee, but without a bowel incident. Honestly I don't see how there could be anything left in there anyway.

I'm scared to take the metimucil this morning. There really isn't that much fiber, so curious if anyone knows how/why this is supposed to work better than food with higher fiber?

For those that have been through this, is there a better way to manage this? I am so up and down. Should I wake up and take an immodium after I drink metimucil? One in the morning, one before bed? How much metimucil are you doing? Just one servings worth? Want to get a better system so that I don't go from doing decent to no control. I'm open to any suggestions. Thank you.
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 » Tue Aug 08, 2017 6:59 am

Maelleous wrote:...
I'm scared to take the metimucil this morning. There really isn't that much fiber, so curious if anyone knows how/why this is supposed to work better than food with higher fiber? ... I'm open to any suggestions. Thank you.


I read somewhere that Metamucil can act either as a stool softener or as a stool hardener, all depending on a couple basic factors. The main factor is the ratio of Metamucul to water: You have to follow the instructions on the package. The second main factor is the temperature of the water (or other beverage). It has to be cold. No hot coffe, no hot chocolate, no hot tea, etc. Any fluid consumed has to be cold. That's what I read.
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'

C2WAVE2
Posts: 24
Joined: Sun Apr 23, 2017 3:22 pm

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

Postby C2WAVE2 » Tue Aug 08, 2017 8:06 am

Thanks for the thread and all the good sugestions from everybody, I'm a day behind Mealleous on my reversal. I'm sure everybody's
response is different, especially depending on what they had chopped out, and whether Chemo and rad.

I am happy to report after my second day home, no more bloody water.. that had me worried.. I had some decent
bowel movements (solid) yesterday, but just a little at time, and frequent. I don't have much rectum left, so that may be the
new norm.
Thought i was good to go, then had turn for the worse, a couple hours of diahria, last night, but at least no blood..

Haven't gone today yet, and actually feel the longer i hold in, the better.. Seems once it starts, it's a long affair..
I haven worried much about diet and drink, just sticking to low fiber and no roughage. I have some amodium, but haven't
tried it yet..
Everybody have a good day! Chuck
4/24/17. 55yr Male, Dx RC near Retcum/Sigmoid junction
O4/28/17 Ct
O5/04/17 MRI
Prelim. T1 N0 M 0 CEA 3.2
O5/23/17 Surgery, LAR 4.5" incision to remove tumor Temp Ileostomy
6/1/17 Pathology report 6.5 x 4.3 x 1.7 cm tumor, Adenocarcinoma,
Moderately to Poorly Differentiated , 0/27 Lymph, T2N0M0
08/02/17 Ileostomy Reversal


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: AdamC, Yahoo [Bot] and 29 guests