Rectal-What's is "normal" like after my ostomy is reversed?

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katycards1
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Rectal-What's is "normal" like after my ostomy is reversed?

Postby katycards1 » Sun Jun 24, 2012 4:12 pm

I just found you today and spent some time reading people's comments. Thanks to all for being willing to share.

I was diagnosed with rectal cancer in Sept 2011, through a routine colonoscopy. Had combined radiation/chemo for 5 1/2 weeks, an 8-week wait, then surgery in Dec 2011. My tumor was at the top of the rectum, just below where it joins the colon. Stage 3, I think. Most of the rectum was removed except for a small section just above the anus. A temporary ileostomy was created. Just finished adjuvant chemo last week. Everything has gone well so far, and pathology reports indicate a large negative margin around the small amount of tumor that remained. The last step is to reverse the ileostomy and adjust to my new plumbing.

But what's it going to feel like after the ileostomy is gone and my whole system is back online? How different is it from pre-surgery normal? Doctors can tell you something about it, but I was hoping someone who's actually gone through it can give me a more detailed idea of what to expect. I'm very nervous about it, to the point that I've considered keeping the ileostomy permanently instead of having the reversal. Sort of like not wanting to trade the situation I know and have learned to tolerate for an unknown condition that might be worse. I would love to hear from someone else who has experienced the "new" plumbing.

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

Re: Rectal-What's is "normal" like after my ostomy is revers

Postby Badass » Sun Jun 24, 2012 8:21 pm

Hi Katy,

Welcome to the ColonClub! I am in your situation (a little behind you) as I am in the midst of adjuvant chemo and anticipating reversal surgery in a few months. I would suggest you do a search with the word "reversal" as there have been many, many threads devoted to this topic-- one was just within the week! Best of luck to you!

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: Rectal-What's is "normal" like after my ostomy is revers

Postby Jachut » Sun Jun 24, 2012 9:36 pm

I felt exactly the same as you do - I'd read all the horror stories and on the whole, I was managing the ileostomy really well, was dying to get back to work and my life in general and really did NOT want to spend months recovering from an ileostomy reversal and dealing with bowel issues. My surgeon was scathing of that - I happened to read his correspendence to my GP (which wasnt shared with me intentionally) and he referred to my feelings as crazy. He seemed to feel that because I was "young, fit and attractive" (his words, not mine!) that made some sort of difference. I dont know, obviously you cant be young, fit OR attractive with an ostomy?

Anyway, the thing is, if you dont try, you will never know. On the whole, I feel life is very different to what it was before, but with ostomy or without, my life was going to be ruled by my toilet routines, at least for a while. I've kind of come down from blaming my surgeon, or being mad about being bullied into a reversal, to accepting that cancer is nobody's fault and I had low rectal cancer and that means natural and normal bowel function is not a reality for me.

I'm a year out of reversal, so things could still change. I've found it to be a lot like how you feel relieved or horrified by a stage your young baby is going through, its the end of the world and then the next week, it all just changes. But my problem for the past five or six months has been obstructed defectation - at the moment, I am not consiptated in that I have soft stools but I cannot pass them unaided. I am totally laxative dependent right now. Its hard, its a three or four hour routine for me and its really difficult with three teenagers and a full time job and a heavy gym and running schedule to find that time. Really hard. But I sit up every second or third night and go through it. I am seeing a pelvic floor physio and a dietician but in my gut (pardon the pun) I know neither will help.

If I dont do this, my life is a blur of constant discomfort, bloating, fullness and multiple unsuccessful urges to go to the toilet and I cant function at work. But I can sadly say, I wont be able to function on school camp with my grade sixes, and caravanning and camping as grey nomads is not in my retirement future. I will always require private access to a bathroom that is mine and mine only on future holidays.

Its a darn sight better than the incontinence and diarrhoea I was so afraid of. Its manageable, but I just want to be normal! Having a bag was easier in a LOT of ways but I dont thing on the whole I'd go back. I do know though that if I hadnt even tried, the whole issue would still be hanging over my head and I'd still be in an agony of indecision. And I would have fought with my surgeon over it each and every time I saw him.

I could have lived happily with my ileostomy, but I dont think I could have let go of the possibility of what life might have been like without it. On the whole, even though I'd not call mine a hugely successful outcome, its not disastrous, if I have to ahve a problem, then obstructed defecation beats incotinence hands down and I'm glad I did it.

Coppercent
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Joined: Thu Feb 23, 2012 4:00 pm

Re: Rectal-What's is "normal" like after my ostomy is revers

Postby Coppercent » Sun Jun 24, 2012 9:39 pm

Just remember to keep in mind everyone's situation is different. Also keep in mind that there are people who have had the reversal and have been unhappy and went to a colostomy. So you probably want to discuss this option with your doctor to see if this may be an option for you of you are unhappy after the reversal. I will be having my reversal soon so I don't have first hand experience but I have talked to several of my surgeons patients that have had similar cases as mine. They are all doing well and have adjusted fine. My surgeon feels that I will have the same results which means I will be out of work for two weeks. Although I know things can go wrong but I am pretty confident they will not. I am not sure if all illeostomy loops are the same but I have bowel movements occasionally after my surgery. My BM's now look like tootsie rolls but I have control and my new plumbing works which gives me hope that things will work well when 100% of my food/waste goes the normal route. Good luck on the next stage of your journey and I hope you find the answers you are seeking.
07/15/11 Stage III Rectal, 08/11 - 09/11 Chemo/rad 11/11 LAR - Whole rectum gone, ostomy, hysterectomy
01/12 Port placed, 01/12 thru 06/12 Folfox, Xelox 10/03/12 Reversal, Clear scan
And then the story continues.
Currently, remission round two!

Surroundedbylove
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Location: Seattle

Re: Rectal-What's is "normal" like after my ostomy is revers

Postby Surroundedbylove » Sun Jun 24, 2012 10:09 pm

Here is a "mini-blog" that I did on my post-takedown (reversal) experience.

viewtopic.php?f=1&t=10327&p=75111&hilit=takedown+info#p75111

And, as an aside, you might also want to check out the Colon Club blog (link from main page). NW Girl did a three part posting called The Colostomy Conundrum. It was her experience with a temporary ileostomy, reversal, and then a decision to have a permanent colostomy.
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

crockpotgirl
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Re: Rectal-What's is "normal" like after my ostomy is revers

Postby crockpotgirl » Sun Jun 24, 2012 11:03 pm

I'm about 2 years out from my reversal and feel blessed with a good outcome. My new "normal" is that I go about 2-3 times per day, but I do try to get plenty of soluble and insoluble fiber everyday in my diet and I also take a tsp of Konsyl fiber every afternoon. I occasionally have "clustering" if I eat something that triggers it (chocolate, raw spinach, etc) but usually have no problems. It took about a year to get to this pattern of 2-3 bms daily.
T3N0M0 rectal IIa 11/6/09 age 43
5FU and radiation
LAR, BSO, j-pouch, ileostomy 2/12/10 at MD Anderson 0/21 nodes
Folfox4 3/10
Ileostomy takedown 7/21/10
Neuropathy 8/10
Port out 10/29/10
Married, 4 young boys, lots of pets
Thankful to be alive!

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RayGirl
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Re: Rectal-What's is "normal" like after my ostomy is revers

Postby RayGirl » Mon Jun 25, 2012 7:08 am

For the most part it's pretty manageable for me. Occasionally I'll eat something I regret, but then again that happens before. The only difference now is that it's different foods, so it's a learning process. My surgeon actually encouraged me to delay my reversal a month or more so that I could travel a bit. I had no issues with my ileo and no one could predict when I would be comfortable doing it again. My tumor was extremely low and he said I would probably hate him for awhile but to please give it six months. Fortunately I did get to travel again three months post reversal.

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."

sadysue
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Re: Rectal-What's is "normal" like after my ostomy is revers

Postby sadysue » Mon Jun 25, 2012 11:38 am

I am three months out from my reversal and I am very happy with the results. I am not the same as pre-cancer (my entire rectum and some colon was removed) but it has not been difficult to adjust to either. The first several weeks are a bitch and may leave you wondering if you did the right thing but it gets better with time. Everyone is different. Some peoples' bodies adapt well and very quickly and others take more time, and then there are others who have problems and can never adapt. Give yourself time to adjust, watch everything you eat for a few months, and make necessary adjustments. If you have any questions at all, this is the right place to come to for help and answers that you won't get from your doctors. Best of luck to you!
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012
NED

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BrownBagger
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Re: Rectal-What's is "normal" like after my ostomy is revers

Postby BrownBagger » Mon Jun 25, 2012 11:54 am

My bowel function is certainly different, but I'd have to say that by and large, it's no better and no worse than it ever was. That's almost three years out, but I'd say it settled into that routine at about two years. I'm on chemo at the moment so my "normal" constipation is even worse, but I think my main complaint is that, unlike before, I never really feel that I'm "done." So, I never really know when I'm done, if that makes any sense at all.
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.

lorrainem
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Re: Rectal-What's is "normal" like after my ostomy is revers

Postby lorrainem » Mon Jun 25, 2012 12:01 pm

Unfortunately normal is only a cycle on a washing machine. Success rates vary from perfect to failure here, just keep informed and have lots of patience. Everyone has different stories but yours is still to be written. Wishing you comfort and personal success on your next step.
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

TimT
Posts: 70
Joined: Mon Jan 16, 2012 2:58 pm
Location: new orleans, LA

Re: Rectal-What's is "normal" like after my ostomy is revers

Postby TimT » Mon Jun 25, 2012 8:59 pm

Hello there katy,
Odds are you will do fine. My doc says 95% of his patients are happy they did had the reversal. I had a low tumor removed and then had my reversal back on dec 20 last year. Lots of hersheys chocolate for christmas. The first six weeks were a little rough, but i've learned to manage it and the end of my colon is doing his best and learning how to be a rectum. I'm 6 mos out now and I generally have 1 planned marathon bm a day (morning). Its strange as without the nerves in the rectum, you don't have that same old good feel that things are about to flow. But it sounds like you still have some left down there so you will probably have better results. About once a week things still get a little crazy when I eat too much or drink too much beer. I did have to make some diet adjustments. fiber fiber fiber!! I'm glad I had the surgery and I now believe it when they say it takes a year to reach the new normal. These days i'm much more worried abour the cancer than the poopy!
Good luck and happy pooping
CRC: dx T3N0M0 1/11
chemoradiation 6 wks - 2/11
surgery LAR 5/11 - T2N0M0
4 mos xel 7/11
reverasal 12/11

katycards1
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Facebook Username: katy.musolino

Re: Rectal-What's is "normal" like after my ostomy is revers

Postby katycards1 » Thu Jul 05, 2012 2:38 pm

Jachut wrote:I felt exactly the same as you do - I'd read all the horror stories and on the whole, I was managing the ileostomy really well, was dying to get back to work and my life in general and really did NOT want to spend months recovering from an ileostomy reversal and dealing with bowel issues. My surgeon was scathing of that - I happened to read his correspendence to my GP (which wasnt shared with me intentionally) and he referred to my feelings as crazy. He seemed to feel that because I was "young, fit and attractive" (his words, not mine!) that made some sort of difference. I dont know, obviously you cant be young, fit OR attractive with an ostomy?


I'm sorry your surgeon was so lacking in support for you. My surgeon said the decision of IF and WHEN to have the reversal was totally up to me. He's not pushing either way. And having just finished chemo, I realize that I'm just not ready to face another abdominal surgery yet. I probably will get a reversal eventually, but I want to feel much stronger and get my energy level back closer to normal before having surgery.

Thanks for your response.
Katy

sadysue
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Location: Charleston, TN

Re: Rectal-What's is "normal" like after my ostomy is revers

Postby sadysue » Thu Jul 05, 2012 3:43 pm

Hi Katy....hopefully you will be surprised and get your energy back faster than you think. I waited about 6 weeks to do my reversal and my surgeon told me the same thing as your's - totally MY decision when/if I choose to have the reversal surgery. I am actually super happy :D :D :D with my results. I had a few bad weeks early on, to be expected in almost any kind of surgery. I still have a bad day occasionally but overall, I am feeling great. My bowel function is not the same as it was before cancer but honestly, it is easy to manage, especially after getting some great advice and ideas from this forum. Best of luck to you!
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012
NED

nicola smith
Posts: 1040
Joined: Thu Oct 07, 2010 9:06 am

Re: Rectal-What's is "normal" like after my ostomy is revers

Postby nicola smith » Thu Jul 05, 2012 3:43 pm

I waited a year for my reversal (j pouch takedown). It was the right decision. I did Kegel exercises throughout the year to maintain the tone of muscles down below and make sure they were ready when the big day came. My surgeon actually congratulated me on their strength.
UC history
11/09: Dx, CEA 2.9
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
2010/11/12/13/14: 6 PET and/or CT's - NED
quarterly 03/2010- 03/2015: CEA range 0.8-1.3
03/2015: discharged to GP :D

justin case
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Location: Katy, Texas

Re: Rectal-What's is "normal" like after my ostomy is revers

Postby justin case » Thu Jul 05, 2012 4:33 pm

I got my reversal march 3 of this year. I generally do all right, even with the fact I have been on chemo, for the last 12 weeks. I might have overdone my 4th of July festivities, because I was on the pot every 45 min, since 7PM yesterday. Maybe chemo, probably corn on the cob, and Dr. Pepper& Coke. I rarely drink a Coke or Dr. Pepper. I only had the ostomy for 3 weeks, as we definately did not get along. Generally I have 5 good days, and 2 iffy days, it's really not bad. As you have heard, everyone is different. I might do better if I watched my diet, but I'm still trying to gain weight after my surgeries.
Regards,
Michael
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


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