Reversal Log: Experience,Problems, Q & A's

Please feel free to read, share your thoughts, your stories and connect with others!
justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Reversal Log: Experience,Problems, Q & A's

Postby justin case » Wed Dec 16, 2015 7:23 pm

CatHair wrote:Not MSK. I was at St. Luke's in the Texas Medical Center. 15th floor is general surgery patient rooms, as far as I could tell, but there were several other patients of my surgeon's so maybe it was mostly abdominal work. Lots of patients walking around gingerly. 19th floor is orthopedics...they need prune juice? Go figure.

Oh, one more tip: Pack a heating pad or hot water bottle. I wished I had one for my backed-up belly. Asked about one at the nurses' station but they said they'd have to requisition one, it would be a big clinical heating pad, it would cost extra on my insurance...jeez. Good luck and smooth sailing!

My reversal was at West Houston Medical Center, also done by a general surgeon. My surgeon specialized in (excuse the expression) gastric surgery,(The thing, Al Roker had).
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

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby cathy123 » Wed Dec 16, 2015 10:21 pm

jdnmyc - I hope surgery goes well tomorrow and that it is your last surgery for a long time.

All - I have not really seen any improvement over the past few months and am getting a bit frustrated. My daily bms range from 15to 40 and control is not great. I was taking citrucel but decided to stop for a bit and gave seen no difference. Immodium seems to have no impact. I am logging my food but can't see any trends - except maybe when I overdo it on sweets it is worse. It is usually worst in evening so I can get thru the days ok, but most nights are challenging and it is stressful when I have evening plans.

Mostly just venting but I am definitely open to suggestions! Not ready to try enemas yet (at least not on a regular basis). I see the surgeon in Jan and am hoping he will have some ideas also.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

ozziej
Posts: 239
Joined: Thu May 21, 2015 8:35 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby ozziej » Thu Dec 17, 2015 8:30 am

Hang in there Cathy, it does get better but some of us just take longer than others. I'm 7 months out from reversal now and have seen a large improvement just in the last month or so . Generally I now go about 4 to 5 times a day on a good day, more on a bad day, with normal type stool. This is down from a max of 20 or so on a bad day, 10 on a good day. Every few weeks I have a day when I get tenesmus and feel like my bowel is trying to turn itself inside out (if men ever want to know what childbirth is like a good round of tenesmus will give them insight :roll: ). I've found that taking laxatives on that day gets rid of everything and sort of resets the system. I'm now back to eating my homemade muesli for breakfast, and can tolerate fibre rich foods like apples with peel, dried fruit, and baby spinach leaves. My system seems to do best if I stick to a routine sort of diet. Things go astray if I miss a meal or eat something off plan such as Thai food or chocolate (boo hoo :( ). I've been doing an exercise program for about 2 months now and that really seems to be helping as well. Evenings are still my worst time but I think that's because it's when I have my largest meal. It really sucks when you're trying to eat your dinner and you have to ignore the pain in your bum that tells you to go to the loo but I've found that hanging on until the pain subsides seems to be teaching my neo rectum to stretch and hold more, making my BM's larger and thus less frequent. I still have some difficulty with wind but generally I can tell the difference and find sneaky ways to let it out without heading for the loo. My experience has been a series of steps with sudden improvements rather than a gradual improvement (not unlike a toddler). I qualify all this by mentioning that pre-dx my 'normal' was severe constipation so control hasn't been a big issue for me. My surgeon says I can expect to see incremental improvement over the next 15 months and if he's right I think things will be manageable.
I've seen posts from people who also had a ULAR and were back to their normal eating patterns with no problems within a couple of weeks. I am so jealous of them, but I suspect they're the exception rather than the norm. So hang in there, because you may be like me and see a sudden improvement when you least expect it.
Best wishes
Jan
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!! : )

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby cathy123 » Thu Dec 17, 2015 10:49 am

Glad you are seeing progress jan! Gives me hope. :D
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

CatHair
Posts: 45
Joined: Mon Aug 17, 2015 11:09 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby CatHair » Thu Dec 17, 2015 12:45 pm

Justin Case, my surgeon is a colon & rectal specialist. The nurses at St. Luke's deeply respect and like him. Their opinions made me feel better about the whole business.

Here's a bang-up breakfast: Familia original Swiss muesli (with dried fruit and nuts in it), soaked in an ounce of prune juice plus other preferred liquid (milk or juice) to desired consistency. Heat up the liquids before adding to the muesli. Include a sploop of good Bulgarian yogurt. Wham-o.
F 55 at Dx
Dx rectal cancer 7/22/2015
LAR with temp ileostomy 8/31/2015: T2N0M0
Ileostomy reversal 11/30/2015
NED 7/15/2016
Work full time, physically active
Wife, mom of two sons now 23 and 19 plus cats and dogs, daughter, sister
Wicked Brazilian samba-reggae drummer
So far, so good

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Reversal Log: Experience,Problems, Q & A's

Postby justin case » Thu Dec 17, 2015 5:31 pm

CatHair wrote:Justin Case, my surgeon is a colon & rectal specialist. The nurses at St. Luke's deeply respect and like him. Their opinions made me feel better about the whole business.

Here's a bang-up breakfast: Familia original Swiss muesli (with dried fruit and nuts in it), soaked in an ounce of prune juice plus other preferred liquid (milk or juice) to desired consistency. Heat up the liquids before adding to the muesli. Include a sploop of good Bulgarian yogurt. Wham-o.

St. Luke's delivered my first son, and the closest we were to colorectal, was, my son's an asshole :shock:
But, He's my asshole 8)
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

CatHair
Posts: 45
Joined: Mon Aug 17, 2015 11:09 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby CatHair » Fri Dec 18, 2015 2:15 pm

Ha! Gotta love those boys.

Our two were born at St. Luke's, too. Never thought I'd be back :shock:
F 55 at Dx
Dx rectal cancer 7/22/2015
LAR with temp ileostomy 8/31/2015: T2N0M0
Ileostomy reversal 11/30/2015
NED 7/15/2016
Work full time, physically active
Wife, mom of two sons now 23 and 19 plus cats and dogs, daughter, sister
Wicked Brazilian samba-reggae drummer
So far, so good

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: Reversal Log: Experience,Problems, Q & A's

Postby JDMNYC » Mon Dec 21, 2015 1:58 pm

Hi CatHair -

So here's my update. Surgery on Thursday; home yesterday afternoon. Except for wound pain (and there is some), I feel pretty good - I'm overweight, so my wound is pretty deep (looks like I was run through with a broadsword). Had a wound vac in the hospital and expect to have one here by Wednesday.

Otherwise, so far so good. I went clear liquids on Friday breakfast and lunch, whole/full liquids for Friday dinner (cream of potato soup and the like). Had some liquid output and gas that sounded like I was auditioning for a sequel to Animal House. Having progressed thusly, they moved me to low fiber/low residue diet on Saturday morning. Had oatmeal and toast for breakfast with a cup of coffee - no problem (in the bathroom every hour to two, mind you, but no accidents or other issues). Had chicken and rice for lunch with a cup of coffee - still no problem. So by Saturday night I was feeling so good that I decided that, by golly, I must be cured, and they'd be writing articles about me in the Journal. So I had some chicken quesadilla, two slices of pizza, little apple pie and a few spoonfuls of vanilla ice cream (on the low fiber/low residue diet). I paid for it; I mean I really paid for it. Horrific gas pains followed by horrific gas. Lotta bathroom time from 12-1 am, and from 5-6 am. I was tempted to set up a cot in there.

So Sunday and today (and for the the foreseeable future), a very bland diet (oatmeal, rice, chicken, banana, applesauce, etc), and since then, it hasn't yet been horrible. I have, however, ordered a bidet seat, a squatty potty, and some cream, and I'm sure I won't regret it - I'm already tired of the wipes that I used to consider luxurious.

Went to bed at 11:30 last evening, woke up at 7 this morning with no interim bathroom visits and no "escapees" (but the cost of an unused Depends is a small price to pay for peace of mind). Moved my bowels at 7 am when I woke up, was back in at 7:30 for another round, and since then (now nearly 4 pm) nothing.

I'm sure I can't draw any conclusions from any of this, but my roommate at MSK was a fellow who had been reversed last Thursday and was still there after I left (11 days in) (first several days he was vomiting, and couldn't pass gas, had all kinds of issues) so I really can't complain.

Keep your fingers crossed.

Jim

CatHair wrote:JDMNYC, I had the same deep apprehensions before my takedown. It truly has been nowhere near as awful as I had imagined. Hope all goes well and smoothly for you tomorrow. Oh, here's a helpful hint: bring prune juice with you to the hospital. It won't be on the low-residue diet menu, but you may need it! My chaplain scored some for me from the 19th floor...
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

CatHair
Posts: 45
Joined: Mon Aug 17, 2015 11:09 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby CatHair » Tue Dec 22, 2015 10:46 pm

Jim,

Good to hear from you. Congratulations on being home. Sounds like you have lots of dietary/digestive things figured out already. It also sounds like MSK doesn't use Aramark for its food services.

Animal House auditions...that Saturday night dinner...hoo boy. But your rhythm so far is barely troublesome. Impressive!

Here's a tip: If you have any potted plants, the filler in unused Depends can be worked into the potting soil to help retain water.

CatHair
F 55 at Dx
Dx rectal cancer 7/22/2015
LAR with temp ileostomy 8/31/2015: T2N0M0
Ileostomy reversal 11/30/2015
NED 7/15/2016
Work full time, physically active
Wife, mom of two sons now 23 and 19 plus cats and dogs, daughter, sister
Wicked Brazilian samba-reggae drummer
So far, so good

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby cathy123 » Wed Dec 23, 2015 2:09 am

Glad you made it home Jim! Definitely sounds like pretty good progress so far.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: Reversal Log: Experience,Problems, Q & A's

Postby JDMNYC » Wed Dec 30, 2015 12:28 pm

Hey All (CatHair and Cathy) -

Thanks for your concerns/comments - very encouraging and very useful. Been home a little over a week now, not going quite as swimmingly as the first day or so had gone. Tons of bathroom time with very little output, lot of discomfort, burning, and what feels almost like anal spasms, if that makes any sense. I'll be good for some hours during the day, and then from say 6 - 10 pm be in the bathroom 25 times (no exaggeration). Only thing that seems to slow things down is Oxy, which I have stopped taking for pain, and reserved solely for bowel control. Still keeping to the largely bland diet, but have to say this phase of things is really wearing me out.

Still only 13 days after reversal, so I'm assuming it gets better, but man, this part is not fun.

Jim
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."

TracieLynn
Posts: 46
Joined: Thu Mar 19, 2015 2:00 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby TracieLynn » Wed Dec 30, 2015 2:04 pm

Well I am in the car heading home from hospital-ostomy reversed Monday. I imagine this is the calm before the storm...only moving a little gas and waiting for the games to begin. This thread has helped me prepare mentally and I've stocked up on a few bathroom essentials. Diet suggestions also appreciated. I'm hungry but afraid to eat! So far a little maltomeal and scrambled egg. Heading home to yogurt and chicken soup. Good luck!
43 yr old Wife to DH Stage IIIB w/one Tumor Deposit
1/17 lymph nodes
Low RC Dx 2.26.15 CEA 19.5
Xeloda and Radiation 3.24-5.1
May 2015 break for recover CEA 5.5
LAR June 2015 w/temp ileostomy CEA 3.3
Xelox Aug 2015 and switch To Northwestern
09/2015 blackout, blood clot, seven stitches, on blood thinners
CT scheduled for 12/8/15
Feb 2016 Met to liver. CEA at 3.1
Liver resection @NW 3/23/16
VATS for Lung 5/6/16
More spots popping up lungs
Folfiri+Avastin Started Sept 2016-current (April 2017)

tammylayne
Posts: 2177
Joined: Fri Jul 16, 2010 9:24 am

Re: Reversal Log: Experience,Problems, Q & A's

Postby tammylayne » Wed Dec 30, 2015 8:43 pm

Don't get discouraged by how things go the first weeks...even really the first 4 weeks. I found my improvements came at 2 weeks, 4 weeks and 8 weeks....then 4 and 6 months. A little more in the following 6 months.

Don't let a bad day get you down...or even a couple of them. Your body has to reinvent itself in many cases...that takes time. There might be foods you can't eat at week 2, or week 4...but when you try again at week 8 you have no problems! Go slow,,,embrace your victories and be kind to yourself. In many cases, you will reach a new normal that is perfectly acceptable. And if not...well...you will worry about that IF it happens, but that cannot be decided for many many months.

Food journal was my life saver those early weeks...I wrote down what when in....and I wrote down when it came out :wink: Really helped me to get a feel for what was happening based on fact.... 5 times in the washroom can FEEL like 10, and that can start to get you down. My journaling actually helped me to see that things went much better then I thought each week...which by the way...is a great way to mark your progress. Day to day...not so much, but look for improvements week over week.

Wishing all the new reversalites GOOD LUCK!!!
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

ozziej
Posts: 239
Joined: Thu May 21, 2015 8:35 pm

Re: Reversal Log: Experience,Problems, Q & A's

Postby ozziej » Thu Dec 31, 2015 3:57 am

Yep, yep, yep..what Tammylane said..wise words. If it helps, I'm 7 months out from reversal after a ULAR. Happy to say that things are becoming quite manageable, definitely not the same as before but still not too bad. I saw a really big improvement between 6 and 7 months out so don't give up hope if things are going belly up in the first few weeks and months.
Happy New Year
Jan :)
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!! : )

JDMNYC
Posts: 133
Joined: Wed Apr 15, 2015 5:12 pm
Location: Morris County, New Jersey

Re: Reversal Log: Experience,Problems, Q & A's

Postby JDMNYC » Sun Jan 03, 2016 12:50 pm

Hey all -

Anyone have any good (healthy) suggestions for the low fiber/low residue diet for the first month or so following reversal? Trying to incorporate some items more heathy than white bread, pasta, saltines, etc. without violating the intent of the regimen. Thanks.

Jim
- Dx Stage IIIc rectal cancer: January 2015 (CEA 20)
- Chemo (Folfox): January - April 2015
- Chemo-Radiation (Xeloda): May - June 2015
- Surgery (LAR/temporary ileostomy): September 2015; 4/20 lymph nodes – no adjuvant chemo
- Reversal: December 2015
- Stage IV: August 2016 - Lung Mets
- Chemo (Xeloda) Started October 2016.
- CEA down; lung mets shrinking.

"There are more things in heaven and earth, Horatio, Than are dreamt of in your philosophy."


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