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

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Amy14760
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Re: Reversal Log: Experience,Problems, Q & A's

Postby Amy14760 » Sun Mar 10, 2013 5:34 am

It's now 5 days post reversal operation and I'm finally getting released from the hospital. I am very happy with how well the jpouch is functioning to date, althought I haven't strayed from the BRAT diet yet. I'm able to control and hold....don't know for how long yet. I haven't had butt burn...maybe the second skin spray is working. And, I've had limited clustering....but of course clustering may be a problem as the breadth of my diet opens up.

I'm really feeling lucky and appreciative of my surgeon right now.
Jun 12: Rectal cancer - Stage IIIC pT2N2 (15/19 pos nodes) - age 49
Jul 12: Resection w/ileostoma
Aug 12: 6 weeks rad w/Xeloda
Sep-Jan 13: FOLFOX - 6 rounds
Jan 13: clean scan
Mar 13: Reversal/Port out
Aug 13: Clean scope
Currently NED

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Amy14760
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Location: Stuttgart Germany / Western NY

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

Postby Amy14760 » Sun Mar 10, 2013 12:38 pm

Still Day 5 post op......enough of the BRAT diet...I'm constipated. But, after waiting for something to happen all day, I finally produced my first fully formed rabbit pellet. I'm also experiencing the dreaded clustering. Time to experiment.
Jun 12: Rectal cancer - Stage IIIC pT2N2 (15/19 pos nodes) - age 49
Jul 12: Resection w/ileostoma
Aug 12: 6 weeks rad w/Xeloda
Sep-Jan 13: FOLFOX - 6 rounds
Jan 13: clean scan
Mar 13: Reversal/Port out
Aug 13: Clean scope
Currently NED

SammyJ
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Facebook Username: Samantha.douglas

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

Postby SammyJ » Sun Mar 10, 2013 3:28 pm

Amy, sounds like you are doing pretty well, keep us posted.

I am very frustrated to report that I am going backwards!!! Just over 3 months for me now. After feeling almost normal for a couple of weeks I am now back to clustering, butt burn and terrible rectal spasms that go all day and night. This has been going for about a week so far. I can only produce rabbit pellets and little worms....and with extreme urgency. Sigh.....had just got used to admiring my normal poo! I haven't changed anything in terms of diet, so not sure what I have done to deserve this. Am taking psyllium 3 times a day and resorted to an Imodium two days ago to give my poor skin a rest.

The only other thing to report s that I have a suspected fistula. Don't know why after everything I have been through I am embarrassed to talk about this but I am! At this stage it is likely only to be tiny as only gas is escaping on high gas days. So the plan at the moment is to try and control the gas rather than go straight to surgery.

Any tips to get back on track?

Other than this I am happy to report I am in a very good headspace, finally feeling very strong and healthy and positive again. I think less and less about what could go wrong and mostly just assume I am going o be fine.

Anyway folks, advice greatly appreciated!
Diagnosed Stage 3A Rectal Cancer March 12, age 39
ULAR and temp ileostomy March 12
Folfox started April 12 , completed Oct 12.
NED 16/10/12
Ileostomy reversal 23 Nov 12....

Sbp79
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Re: Reversal Log: Experience,Problems, Q & A's

Postby Sbp79 » Mon Mar 11, 2013 1:44 am

Hi everyone,

Firstly a big thanks to Jane and the whole gang here for documenting how reversal has gone. I just read through all the posts and it gave me significant confidence that things will get better!

I had my ileostomy reversed on 20 Feb 2013, so it's Day 18 post surgery. I go 4-5 times each day, though the major poop session is a midnight party. Takes a good 1-2 hours to evacuate. Poop is formed, but finger sized and rabbit pellets so far! (No turdles yet!) I saw my surgeon this past week, and he suggested I add fiber starting tomorrow. I am going to start with Metamucil - a teaspoon in 2 oz once a day and slowly introduce one fiber food each day.

So far, I have been eating white rice, chicken, fish, yogurt (normal and greek), egg whites, potatoes, noodles.

The butt burn and itch have been extremely frustrating! When I go for a few times, I start noticing streaks of blood on my poop and on the baby wipes I use. Liberally using desitin and convatec's aloe paste for relief after every BM. Surgeon said not to worry about blood since the area gets sore after repeated BMs, but I am going to ask again tomorrow. Based on what I read, I suspect an anal fissure... Lets are what he says. Really praying that Metamucil helps me. I have also been doing sitz baths to soothe my butt.

Last week, I ate the pulp of a mango and it made me empty my bowels quickly - sort of like a diarrhea episode. No more mangoes for now!

In other less significant news, my open wound post ileostomy reversal is closing up slowly but nicely.

What should I try, stop or change? Anything to improve things - my sore butt is really bothering me!! Prune juice and oatmeal in the AM?

btw, I loved the puns and am loving the new reversalitis vocab I have picked up! :)

Thanks!
Pi

-------------------------------------------------------------
04/12: Dx Stage 3 RC, T3N1M0, 3 cm from anal verge, 1 inch, 32 yrs (married/no kids)
05/12: Confirmed for Lynch syndrome
05/12 - 08/12: Folfox, 8 sessions
08/12 - 09/12: 25 sessions of chemoradiation - Xeloda and proton beam
11/12: CT, MRI and sigmoidoscopy showed no tumor
5 Dec 2012: LAR with diverting ileostomy and coloanal anastomosis
12/12: Pathology - NED
20 Feb 2013: Ileostomy reversal

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Amy14760
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Re: Reversal Log: Experience,Problems, Q & A's

Postby Amy14760 » Mon Mar 11, 2013 8:30 am

Sammy.....I was just reading about pouchitis at www.jpouch.org. Could this be a reason for the issues you are currently experiencing.

Last night after convincing myself I was constipated, I drank a big glass of prune juice. WOW.....won't do that again. I will be buying new underwear this weekend.
Jun 12: Rectal cancer - Stage IIIC pT2N2 (15/19 pos nodes) - age 49
Jul 12: Resection w/ileostoma
Aug 12: 6 weeks rad w/Xeloda
Sep-Jan 13: FOLFOX - 6 rounds
Jan 13: clean scan
Mar 13: Reversal/Port out
Aug 13: Clean scope
Currently NED

SammyJ
Posts: 198
Joined: Wed Jul 25, 2012 5:03 pm
Facebook Username: Samantha.douglas

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

Postby SammyJ » Tue Mar 12, 2013 2:36 pm

Thanks for the giggle Amy.

No pouch so cant be pouchitis. Am thinking maybe I am not taking my psyllium quickly enough after a meal or am having too much liquid with a meal for it to be effective in helping things bulk up?

Or maybe i should take immodium more often? Or a regular pro biotic?
Diagnosed Stage 3A Rectal Cancer March 12, age 39
ULAR and temp ileostomy March 12
Folfox started April 12 , completed Oct 12.
NED 16/10/12
Ileostomy reversal 23 Nov 12....

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

Postby RayGirl » Tue Mar 12, 2013 5:03 pm

Prune should have a warning label on it for people with semi-colons. Best drink an ounce or two only at a time.

SammyJ wrote:Thanks for the giggle Amy.

No pouch so cant be pouchitis. Am thinking maybe I am not taking my psyllium quickly enough after a meal or am having too much liquid with a meal for it to be effective in helping things bulk up?

Or maybe i should take immodium more often? Or a regular pro biotic?



Per MD Anderson bowel training. Try taking your psyllium before you eat with 2 oz of fluid rather than the 8oz in the directions. Limit fluid intake with the meal as well will help. It was hard to get I the habit of drinking in between meals, I usually drank two glasses a meal and was really dehydrated after a few weeks until it registered that I had cut out almost four glasses of water a day! Good luck!
Stage III Rectal: T3, 3/21 Nodes
dxn:Feb-10
Radiation&Xeloda
7.5 hr surgery
12th FOLFOX Nov-10
Takedown:Jan-11

"Life is not about waiting for the storm to pass, it's about learning how to dance in the rain."

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

Postby RayGirl » Tue Mar 12, 2013 5:03 pm

Duplicate post

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

Postby Badass » Tue Mar 12, 2013 10:13 pm

Amy, welcome! Glad you find the thread helpful.

Sammy, for what it's worth, I found that the psyllium stimulated a lot of clustering for me- well-formed but clustering nonetheless. And I was very careful to take it with minimal liquid. I am doing better with just one or two Metamucil cookies a day. I find Imodium very helpful and sometimes combine two Imodium with one lomotil (prescription) and I am good for the whole day. Can't do that everyday,though, or I would never go. Just every few days and it makes a big difference.

Jane
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

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

Postby Jachut » Wed Mar 13, 2013 12:51 am

Psyllium gives me clustering too - still can't poop unaided, just get the sharts instead.

I find LSA mix much better for enlarging and softening the stool - bonus is its full of nutrients too. Still can't poop without an enema but when I do the enema it all comes out in a very impressive almost- log!

teachpdx
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Location: Portland, OR

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

Postby teachpdx » Sat Mar 23, 2013 1:29 pm

Hi All,

I finally got around to getting my info updated so I could post. Had my reversal on 3/12 and working on having poops on a regular basis. Was concerned about diarrhea when I got home and promptly plugged myself up. Should have guessed as much as constip was more my norm than not. With help of Colace, Miralax, prune juice - got things moving. Now working on a high bulk/fiber diet. First day without colace or miralax. Will keep my fingers crossed. Seem to have my clusters in the eve which might not be so bad when considering getting back to work. The think what has saved my life is I purchased a bidet (biffy) that attaches to your toilets water source. I know I would have a much more unhappy bottom except for that. Had a few days without before it arrived and now I swear by it. Stay home in eve mostly, especially after eating. Went to a friends the other night to watch bball and after awhile clusters began. By the third time without my Bif'fy my butt was hurting. Had a slight accident from TRYING to hold back because I couldn't stand another trip without Biffy. Got home, cleaned up, no harm no foul.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

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

Postby Badass » Sat Mar 23, 2013 4:06 pm

Jachut,
Very validating to know that you also find psyllium stimulates clustering. What is LSA mix?

Teachpdx, Congratulations on your reversal. Sounds like you are already finding your routine! Keep us posted.
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

Jachut
Posts: 1137
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

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

Postby Jachut » Sat Mar 23, 2013 4:30 pm

Linseed, sunflower seed and almonds all ground up. You can buy it in supermarkets or health food shops here. It's the linseed (flaxseed) part that does the job so you can buy those and grind them up too - tastes good nd you can mix into oatmeal, yogurt, use in baking etc.

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Amy14760
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Facebook Username: Amylynneehmann@gmail.com
Location: Stuttgart Germany / Western NY

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

Postby Amy14760 » Wed Mar 27, 2013 10:46 am

Hey All,
I'm now 3 weeks post op and "turd is the word". I actually have real poop, albeit skinny poops. I seem to have one day of going alot and then 2 days without much action. I have expanded my diet to eating most everything and the going is pretty good. I do have have some clustering despite oatmeal for breakfast and 1-2 metamucil cookies per day.

I have developed a fissure...believe the tissues are still recovering from radiation and lack of use. Resultantly, I have learned to love the bidet in the bathroom that has never been used before my reversal.

I'm back to work and life full time now with only small issues....such as excusing myself during an occasional meeting. I am able to hold it until I reach a bathroom as I learned the other day when I was stuck in traffic on the way home. And somehow my body seems to know when to let loose as my colon is much more active when I am at home.

In short, I'm delighted to be using my anus again. While the new septic tank ain't like the old one, it works and I'm feeling pretty fortunate that I had a great surgeon.

Hope you are all progressing well and eating cheeseburgers with fries : )

Amy
Jun 12: Rectal cancer - Stage IIIC pT2N2 (15/19 pos nodes) - age 49
Jul 12: Resection w/ileostoma
Aug 12: 6 weeks rad w/Xeloda
Sep-Jan 13: FOLFOX - 6 rounds
Jan 13: clean scan
Mar 13: Reversal/Port out
Aug 13: Clean scope
Currently NED

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Amy14760
Posts: 186
Joined: Mon Jul 02, 2012 10:08 am
Facebook Username: Amylynneehmann@gmail.com
Location: Stuttgart Germany / Western NY

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

Postby Amy14760 » Sat Apr 27, 2013 3:25 am

Hi All,
I'm coming up on 2 months post reversal. Situation continues to improve and the new septic tank is not keeping me from living life. I do have some bad evenings still, but am eating anything and everything I want. I am trying to learn what triggers a bad night and have learned that greasy food, chinese takeout, and bier do not sit well in the system. I also had a problem with bolognese pasta this week. Probiotics and fiber seem to help. On days I know I can't be running to the bathroom, I take immodium and don't eat much. So far, that has worked well. To date, I have only had one accident outside of the house. In short, most days are great and I am so happy to be reversed. I have recently bought a new wardrobe in celebration of the thinner and bagless me. I hope you all are doing well.
Amy
Jun 12: Rectal cancer - Stage IIIC pT2N2 (15/19 pos nodes) - age 49
Jul 12: Resection w/ileostoma
Aug 12: 6 weeks rad w/Xeloda
Sep-Jan 13: FOLFOX - 6 rounds
Jan 13: clean scan
Mar 13: Reversal/Port out
Aug 13: Clean scope
Currently NED


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