Reversal Journal -- just had the surgery this morning.

Please feel free to read, share your thoughts, your stories and connect with others!
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 Sep 26, 2017 3:51 pm

Latest update. Been pretty good. Flew to Pittsburgh to get my quarterly CT scans. Trip was uneventful with bowel issues. After I drank the stuff for the contrast I had some bowel issues for a little while that afternoon. I notice if I am forced to hold it for a good while, it seems to help.

High Resolution CT Scans were all clear, so very happy about that.

One thing that I notice, and I forgot to mention to the doctor that kinda freaks me out sometimes is that in the toilet after I go I think I see blood pooled at the bottom but upon looking very closely it is not blood but is either mucus or runny brown that seeped off the poo. It is a orangish brown typically. My stool is mostly formed, but looser than regular ones before all the surgeries which could be part of it. One particular toilet in my house seems to make it more visible, I don't seem to notice it in other toilets, so maybe it is just the way that toilet is shaped. Also I don't ever see anything streaked on the poos like I did when I had cancer. I literally just was scanned and had my blood checked etc, yesterday so I don't know why I let it make me nervous lol --- I guess that is part of life going forward!
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 » Tue Sep 26, 2017 6:50 pm

How much rectum did they resect on you? Apparently my tumor hit the sweet spot and I'm left with only 10%. That's obviously a bad sign for bowel performance but the other variables (age, sphincter elasticity, no radiation) break in my favor.

BTW, I had my reversal yesterday and have had five or six liquid BMs. Things are still slow and the pain meds aren't helping on that front, so I'm waiting for the storm to begin.
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

User avatar
susie0915
Posts: 551
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 » Wed Sep 27, 2017 8:32 am

I had most of my rectum removed. The tumor was 2cm and 4-5 cm from anal verge. It does make it tough for storing stool so bms are frequent. After you give it some time and see where you're at there are options that help your quality of life. But many do fine in time. After a little over a year after reversal I went to a bowel control clinic and it was very helpful.

Basil wrote:How much rectum did they resect on you? Apparently my tumor hit the sweet spot and I'm left with only 10%. That's obviously a bad sign for bowel performance but the other variables (age, sphincter elasticity, no radiation) break in my favor.

BTW, I had my reversal yesterday and have had five or six liquid BMs. Things are still slow and the pain meds aren't helping on that front, so I'm waiting for the storm to begin.
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 » Wed Sep 27, 2017 4:37 pm

Maelleous wrote:Latest update. Been pretty good. Flew to Pittsburgh to get my quarterly CT scans. Trip was uneventful with bowel issues. After I drank the stuff for the contrast I had some bowel issues for a little while that afternoon. I notice if I am forced to hold it for a good while, it seems to help.

High Resolution CT Scans were all clear, so very happy about that.

One thing that I notice, and I forgot to mention to the doctor that kinda freaks me out sometimes is that in the toilet after I go I think I see blood pooled at the bottom but upon looking very closely it is not blood but is either mucus or runny brown that seeped off the poo. It is a orangish brown typically. My stool is mostly formed, but looser than regular ones before all the surgeries which could be part of it. One particular toilet in my house seems to make it more visible, I don't seem to notice it in other toilets, so maybe it is just the way that toilet is shaped. Also I don't ever see anything streaked on the poos like I did when I had cancer. I literally just was scanned and had my blood checked etc, yesterday so I don't know why I let it make me nervous lol --- I guess that is part of life going forward!

Barium has a huge effect on me , I last about 45 minutes, and then have an awesome release, usually in the place I was eating my first meal in 18 hours. Streaks in the pooh, are usually from the surgical process, as there were stitches. If you hold it for a good while, sphincters are working well.
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 » Thu Sep 28, 2017 1:32 am

I figured out what the orange color I kept seeing was. I started taking Tumeric/Curcumin supplements about a week or two ago, forgot that would dye my poos quite a bit that bright orange you see.

So last night i was able to have a glass of wine with dinner (out with work) and zero issues. Two months in and feel completely comfortable at work and in meetings. Obviously there are still going to be bad days, but the bad days end up being more like a few bad hours then back to normal. The early days can be hard, but it does seem to get better faster and faster as you get a month or two out.
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: 108
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

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

Postby Maelleous » Sun Oct 22, 2017 5:01 am

Give an update. I still go quite a bit some days. It seems like every other day is more active than the other. I don’t seem to have much restrictions on food anymore. My stool is always solid and has gotten a lot harder. I still will go 6-8 times in a day sometimes, but I would classify it has frequency more than urgency. I can hold it as long as I need to and going is much easier than it used to be. Before I would feel the urge to strain to get it all out. When I do finish, it feels complete unlike the earlier days.

I usually have to go shortly after eating, or drinking a lot of fluid.

Recently (and I posted a different thread out this) I have been seeing blood in my stool the past two days. I think some of the times in the past I thought it might have been blood but looked more brown to me, may have in fact been blood. I am on an aspririn + turmeric regiment, so I do bleed easier than others (related to my cardiac arrest from chemo.) I had my CT scans less than a month ago so keeping a cool head that it isn’t likely cancer, but obviously concerned and it is hard not to freak out. I have a message into the doctor, as these things seem to always happen on a Friday. Praying for the best, but have a feeling it is a fissure or something related to the surgery. I can deal with that, just will melt down if it is cancer again. Keeping positive though, full scans 3.5 weeks ago, and had the surgery less than 3 months ago and they were all up in there (flex sig and gastro-gappphin enema) so I would think they would have seen it by then at that point.
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: 108
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

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

Postby Maelleous » Thu Dec 07, 2017 7:30 am

It has been a couple of months since I have updated.

Things are going really well for the most part. For some reason the past few days I have had a few issues with a bit of frequency here and there. I can eat pretty much anything I want now. I can safely have a couple of beers or a glass or two of wine. I won't test beyond that, as it isn't healthy anyway. Spicy food is A-OK and I have been eating a mostly plant based diet now with very few ill effects.

I get a colonoscopy (my annual one) on Monday, as long as that is all clear, which I am optimistic it will be, I don't get scanned again until March. Hoping and praying it stays clear going forward and life can continue to move in a positive direction!
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: 690
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Dec 07, 2017 7:31 am

I'm glad to see this thread revived.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

User avatar
susie0915
Posts: 551
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 » Thu Dec 07, 2017 9:29 am

Good Luck with your colonoscopy . I'm glad you are feeling and doing well. This news makes for a wonder holiday season for you.
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


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



Who is online

Users browsing this forum: LeonW, Yahoo [Bot] and 37 guests