How are you doing after ileostomy reversal?

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Airmid
Posts: 67
Joined: Fri Feb 05, 2010 9:26 pm
Location: Ontario Canada

How are you doing after ileostomy reversal?

Postby Airmid » Sat Feb 13, 2010 12:29 am

Hi all-I am counting down the days to have my ileostomy reversal surgery and have been reading the threads related to your experiences with having this surgery. I am glad to be getting the surgery, but I am nervous about what my recovery will be like. From what I've read everyone's experiences vary widely, so I guess I'll just have to wait and see how things go for me. I've had my temporary ileostomy for about a year and 8 months so I expect it will take some time for my bowels to remember what their supposed to do. I am so glad to have found this site because I've only met one other person who has had rectal cancer and a temporary ileostomy reversed. I expect I'll be staying home and close to the tolilet for quite a while once I come home from hospital and it is reassuring to know that I will be able to talk to people through this site.
Wish me luck
Airmid
Airmid
02/08 DX-mCRC, liver mets
03/08 Xeloda 6wks, Radiation
06/08-LAR, Temp Ileostomy
10/08 Folfox 8 treatments
04/09-Liver resected
05/09 5FU 8 treatments
02/10 Ileostomy Reversal
11/11 CT Scan NED

NWgirl
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Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: How are you doing after ileostomy reversal?

Postby NWgirl » Sat Feb 13, 2010 1:06 am

The UOAA site has a sub-group for people with temporary ileos and reversals - here's a link if you haven't checked it out before - http://www.uoaa.org/forum/viewforum.php?f=25

Peoples experiences vary GREATLY - some have great success, some complete failure - and pretty much everything in between. Keep in mind too that people who do have great success most likely have less reason to come to the boards - so if you don't see tons of posts of "I'm doing so well" - that it means people don't do well - it's just that the majority of those people have moved on and don't post as often.

Best of luck with your reversal!
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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BrownBagger
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Location: Central NYS

Re: How are you doing after ileostomy reversal?

Postby BrownBagger » Sat Feb 13, 2010 8:54 am

Well, I'll start you off on a positive note. I got reversed on August 20 and returned to work (office job) within a week. By early September, I and was traveling around the country for work and pleasure (airports and interstates) and didn't have any accidents or other unfortunate experiences. I did use percocet and immodium to keep the rectal cramping under control and while it wasn't always easy, it has been manageable.

If my experience is any indication, plan to stay close to a bathroom for the first two weeks, watch what you eat, and expect a fair amount of pain and discomfort at times during the first few weeks. After that, things should slowly improve for you.

I hope that's how it goes for you. Sleeping on my stomach again was one of the many benefits.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

Cured
Posts: 560
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: How are you doing after ileostomy reversal?

Postby Cured » Sat Feb 13, 2010 9:22 am

Airmid, I am happy for you that you are OK 2 years after "mets to liver". Faith & modern treatments give us hope for long life.

Since you have read-up, and are focusing on this, you have some advantage. If you discipline yourself in what you eat in the early weeks, you will do better. I also had Rectal Cancer, but my Illeo was only 6 months - still long enough for the "tubing" to shrink (now needs to stretch). When eating high fiber, I feel "fullness" and need to go. But I do not have accidents. To the world, I appear normal. It is amazing how the body recovers.

Best Wishes.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 CyclDone 1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA to 4.5 after 1 chemo
After 8rds CEA 3
CEA 1.8, 2.3,1.7,2.2,5.7,5.3
12 rds Folfiri
Avastin evy 3 wks
Seizure Anti-seiz meds work-no driving for 6 mo
4-20PET: Lung spots=Chemo

dipifit

Re: How are you doing after ileostomy reversal?

Postby dipifit » Sat Feb 13, 2010 9:58 am

As well as Brownbagger, I never had a problem with my reversal...I was reversed on April 2009, and no "accidents".
I did go to the bathroom several times a day but hey!! I love to be able to go to the bathroom several times, I had no problems with that, I had no pains or disconforts, everything went fine. I was very anxious of being able to have a reversal and back to a more normal life. I Thank God everything went fine. I started working 3 weeks after my reversal, and what I mean by working is working out, I am a Fitness and Pilates instructor...so I was already doing real strong abs not even a month after the reversal and port removed surgery. Diet, mental and physical acctivities play a very important part on your recup.

I was DX with stage II CRC in July 2008, and went through the entire combo of 2 months of 24/7 chemo and radi,otherapy then the colon resection with temp. ileo, 4 more months of Folfox and then the most beloved surgery of them all my reversal :D .

Keep your mind very positive, and work on your recuperation, keep focus, and remember that cancer is a battle that needs to be fought to the end.... the very end, we have to become strong warriors from one minute to the next to be able to win this battle.

Buena Suerte on your reversal, I am sure you will do just fine

rayfar
Posts: 6
Joined: Sat Feb 06, 2010 1:05 pm
Location: usa

Re: How are you doing after ileostomy reversal?

Postby rayfar » Sat Feb 13, 2010 9:19 pm

Airmid,I am hoping the super Awesome Lord God gives you much healing this year. Pray often to Him through these battles. Peace to you dear friend. GLORY TO GOD AND PTL :-) Rayfar

Twinsmom
Posts: 294
Joined: Sat Mar 07, 2009 5:23 pm
Location: Illinois

Re: How are you doing after ileostomy reversal?

Postby Twinsmom » Sun Feb 14, 2010 5:37 pm

Airmid,

I had my reversal on Deecember 7. The surgery itself was a no brainer. Surgery on Monday, home on Wednesday, off pain killers Thursday. I did (and still do) have very frequent bowel movements but never any explosive accidents and was back at work in 2 weeks. Just got home from a 4 day business trip on Friday. I do have a few suggestions:

1. DO NOT use the hospital toilet paper. Bring some diaper wipes to the hospital and use only the diaper wipes. (They are softer and bigger than moist wipes.) I made the mistake of using the cheap hospital toilet paper and had an open sore near the anus by the time I went home. You should also invest in some soft zinc-oxide cream. If you are really going a lot, even the diaper wipes can feel hard. Spread the zinc oxide cream on the diaper wipe and use that.

2. Start with a low fiber, low residue diet (apples with no skin or applesauce, rice, white bread, potatoes with no skin, yogurt, etc) and gradually add the fiber into your diet. My doc told me I could eat anything and so I did. (I love fruits, veggies, nuts, etc). I found that the amount of fiber I ate was directly proportionate to the number of times I pooped. I really paid for the bowl of chili I ate on night 5...

3. Probiotics are a good idea since the bacteria mix in your intestine will be totally off. Talk to your doc about immodium.

4. Once you start using immodium (and you probably will) be careful not to use too much. A few people on this site have said you can't OD on immodium. Not true. My system is not highly tolerent of it and I made myself very sick a couple of times.


Best of luck - be patient, it does get better over time. I'm still recovering but it's now very tolerable.

Wendy
rectal cancer dx 12/19/08 at age 46
49 yrs old
stage IIa
chemoradiation 6 weeks Jan 09-Feb09
surgery 4/13/09, clean margins, temp ileo
Folfox 5/09 - 10/09
Takedown 12/07/09
Clean CT scans April, 2010 and May 2011: NED
Twin sons, age 13

mm66ny
Posts: 427
Joined: Mon Jan 18, 2010 11:11 pm

Re: How are you doing after ileostomy reversal?

Postby mm66ny » Thu Feb 18, 2010 12:23 am

Good luck with your reversal.

I had mine four weeks ago, and went back to work last week (part time for now). I had my ileostomy for seven months.

The first week or two was rough; mixed with the pain of the surgery and trying to figure out what I could eat after having my colon inactive for so long. Dairy caused a lot of pain, but now it's fine (although I think it makes my colon rumble a bit). I go to the bathroom about ten times a day, and have caught up on a lot of reading.

As someone else mentioned, start with a low residue, low fiber diet and slowly work fiber back in. It's sort of like the B.R.A.T. diet. I ate white rice, eggs, white bread--refined things. They were easier on the digestive system. I've lost some weight since then.

I have not had any accidents yet, but I do experience a bit of cramping and urgency (difference from the type of urgency feeling you had before cancer overtook your life), but I have been able to hold it for fairly long periods of time, but it can be painful. I'm hoping in a few months that the pain lessens. I have a coloplasty, not a j-pouch.

I also agree with what someone else said--and I had to remind myself of that before I had the reversal and was fearing it. And that is, people who have successful outcomes usually don't post. It's the people who have a hard time that go searching for boards and post, so you can't judge the chances of a favorable outcome based on the number of people posting with less than favorable outcomes. Everyone has a different outcome.

And keep your sense of humor. It has worked for my whole life, and especially during the past year.
Dx RC, T3N1M0, Feb. 2009
LAR, Ileostomy June 2009
12 Folfox tx
Ileostomy takedown Jan. 2010
June 2014 five years NED
Age 48
married w/7 children
Generally irresponsible

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Airmid
Posts: 67
Joined: Fri Feb 05, 2010 9:26 pm
Location: Ontario Canada

How are you doing after ileostomy reversal? 3 days to go

Postby Airmid » Mon Feb 22, 2010 3:26 pm

Hi everyone
Only three days until I go in for the surgery. Letting me know about your experiences has given me hope that everything will turn out just fine. Thanks for all the tips about how to best care for myself after the reversal: zinc oxide, baby wipes, foods to eat, pain meds, immodium, and prayer. It's so good to hear that you are all doing so well after having these surgeries. I'll try to keep my sense of humour because I know it will help me recover all the faster. Thanks again for your support--It really helps!
Airmid
Airmid
02/08 DX-mCRC, liver mets
03/08 Xeloda 6wks, Radiation
06/08-LAR, Temp Ileostomy
10/08 Folfox 8 treatments
04/09-Liver resected
05/09 5FU 8 treatments
02/10 Ileostomy Reversal
11/11 CT Scan NED

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: How are you doing after ileostomy reversal?

Postby BrownBagger » Mon Feb 22, 2010 3:30 pm

Good luck, Airmid. We'll be here to help you get through the rough spots if you need it.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

Surroundedbylove
Posts: 3124
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: How are you doing after ileostomy reversal?

Postby Surroundedbylove » Mon Feb 22, 2010 9:58 pm

Good luck Airmid - when you're ready to start reading my day by day experience and food suggestions, it's on this board - it may help you with food choices and adaptation after the surgery.

We're all pulling for you to have a smooth recovery!
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

530jgs
Posts: 50
Joined: Wed Mar 10, 2010 12:49 pm
Facebook Username: 530jgs

Re: How are you doing after ileostomy reversal?

Postby 530jgs » Wed Mar 10, 2010 2:59 pm

i have just found this site. i will be having my ileostomy reversal after 15 months on apr 12th. i had a laparoscopic lar with ileostomy after chemo, rad and another round of chemo. i was to have a reversal last fall but a deep dvt in my inferior vena cava was found by ct one week before surgery. i have been on coumadin for 6 months and now finally geeting the reversal. i am quite apprehensive about the surgery but it is great that i found this resource . many answers have been found to my questions. i wish you luck with your speedy recovery..jim

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Airmid
Posts: 67
Joined: Fri Feb 05, 2010 9:26 pm
Location: Ontario Canada

Re: How are you doing after ileostomy reversal?

Postby Airmid » Wed Mar 17, 2010 7:25 pm

Hi Everyone
It’s been 3 and a half weeks since my reversal surgery and things are going pretty well. No surgical complications (eg abscess) as I know could have happened. Thank God!
They kept me in hospital for 5 days. I was given metroclopramide, a drug that helped get things moving through my system. After that drug I had major diarrhea for a day. I am glad I took baby wipes and zinc oxide to the hospital with me as it likely saved me from butt burn.
The first week home I had to take pain meds regularly. I have no more pain whatsoever so I’ve stopped taking all the pain meds. My doctor told me not to take any immodium when I got home and so far I have not needed it because I’ve had no diarrhea. I’ve been following the low residue diet that some of you suggested which seems to be agreeing with me. I sure do have to go to the bathroom a lot. My doctor said I could expect to have 6-12 bms a day, but it’s been more like 10-15 times a day. I don’t mind how often I go but the urgency I feel sometimes-Yikes!. I don’t get much warning that I need to go, then I dash so I can make to the toilet on time. Anyone else experience this?It amazes me that some of you said you would have been back to work by now. I know some of you have the j-pouch, I have a straight connect, someone mentioned coloplasty (I don’t know what that is?)—maybe that makes a difference. I’ve only left my house a few times since I got home 3 weeks ago and made sure the stores I went to would have a bathroom just in case.
For the past year and 8 months I had to get up at least once through the night to empty the pouch. I was so surprised last week when I slept through the entire night without waking up at all. Yeah! no bms at night. It’s also nice that I can sleep on my stomach.
I don’t have to go back to work (deskjob) for a while yet and maybe the urgency and number of daily bms will improve, but I am concerned about how I will cope at work if I have to go to the bathroom 10-15 times a day. Maybe I’m trying to think too far ahead? Did any of you have these issues and if so how did you cope?
Airmid
02/08 DX-mCRC, liver mets
03/08 Xeloda 6wks, Radiation
06/08-LAR, Temp Ileostomy
10/08 Folfox 8 treatments
04/09-Liver resected
05/09 5FU 8 treatments
02/10 Ileostomy Reversal
11/11 CT Scan NED

Surroundedbylove
Posts: 3124
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: How are you doing after ileostomy reversal?

Postby Surroundedbylove » Wed Mar 17, 2010 10:57 pm

Hi Airmid,

Hang in there - you're still early in the process and it was tough for me too at that point but I've really improved and easily am able to be active and also be at work. If you haven't read my thread about my experience, please check it out - just search for "Takedown Info" and find the thread I started.

At three and a half weeks I'd talk with your doc about adding more soluble fiber to your diet. The low residue diet doesn't bulk up the stool in the right way. WIthout bulking up the stool, the urgency and frequency are worse. Once I got the hang of the soluble fiber working with my system, things improved. Also, I'd talk with your doc about Imodium again - I could use it earlier than you are at right now. It slows down the contractions of the colon which helps when you have either a j-pouch or a straight connection. With the radiation you had, the remaining tissue isn't as elastic so it can't expand to hold soft stool and instead you have urgency and frequency. When the stool has soluble fiber added, it firms up and presses against the tissue, helping rebuild elasticity over time. When you add Imodium it also helps to allow the stool to expand agains the walls of the colon and stretch things out rather than rush along. So, usually some combo of soluble fiber and Imodium works.

Also, trying to get a meal or two a day that trigger bowel movements helps to "clean things out" so that you don't have stool to move along. The bowel training program I did really helped with that - and still does.

If you have any questions after reading through my thread, please post them - between Eric (brownbagger) and I and the others on this board, we're happy to comment.
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: How are you doing after ileostomy reversal?

Postby BrownBagger » Thu Mar 18, 2010 6:44 am

Sounds pretty typical to me, Airmid. Follow SBL's advice and you should see results sooner rather than later. Frequency is an issue for all of us. I'm down to 2 or 3 times a day, so it does get better over time. I'd second the Imodium suggestion--I hate taking medication, but it helped me a lot during the first six months. Also, keep track of what you eat. Something unexpected may be triggering uncomfortable episodes--something you could eat before but can't now. For me it was tomatoes. Love 'em, but go figure! And, as I probably said earlier, measure your progress week-to-week instead of day-to-day.

Good luck!
'
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.


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