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Recovery time from and experience with ileostomy reversal?

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Recovery time from and experience with ileostomy reversal?

Postby janeandrea » Sun May 25, 2008 9:53 pm

Hi all - I go in Tuesday morning to get my ileostomy reversed. I don't really have a very clear idea of what my recovery time or experience will be. I remember having quite a bit of pain after the ileostomy was put in (Feb 29 of this year), and of course the even worse pain after my resection last month (April 7). My doctor said 5-6 weeks recovery, which is the answer he gave for all my surgeries. :) Not saying it isn't accurate. But my experience has been that the surgeon underestimates the pain of surgery, or is inadequate at communicating it. He must feel I will heal fairly well, as he told my oncologist we can start my 6 mos of FOLFOX 3 weeks after the surgery (we are already late starting, lots of reasons).

So - can anyone share what their experience was with their ileostomy or colostomy reversal? And if you also had a rectal resection, how did it go (no pun intended) using your plumbing again?

Thanks,

Jane
Stage IIIC rectal cancer, dx 12/07
Interrupted 5 week 5 FU and daily radiation treatment suspended in the 5th week, due to adverse reaction to radiation
Emergency temporary loop ileostomy Feb 2008
Low Anterior Resection April 2008, 11 of 22 nodes positive
FOLFOX in 3 weeks
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Postby Ali » Mon May 26, 2008 4:57 am

Wish you good health.
Some doctors like mine prefer to wait for a year or more before reversal especially if you need chemo. In my opinion having the ileostomy makes it easier to deal with chemo because chemo can cause diarrhea and if there is a pouch it can affect the healing.
I don't know details about your problem, but it is good to have a quick second opinion from a doctor if you can even aver the phone.
having said that, I am sure your doctor knows better and has considered all that but sometimes they under estimate the healing time or they don't give you enough time to discuss things.
good luck.
stage IV colon cancer
surgery Aug. 2007. ileostomy
finished chemo Feb. 2008
-----------------------------
If your prayer has not been answered, don't worry, God likes to hear you more.
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Postby janeandrea » Mon May 26, 2008 9:45 am

Actually having the reversal first was a decision I made with my doctors. Having the ileostomy was so affecting to me, so depressing, that they feel the positive effects of reversing the ileostomy (I do not need it for the healing of the resection - he had never planned to give me an ileostomy for that, it was given to me over a month before, in an emergency situation) outweighed waiting 8 months after chemo and healing from chemo. I have to go through the pain of the diarrhea anyway, so why not get it out of the way now, was part of our thinking.

Thanks so much for your input, it was a big decision for me to make, and I had almost changed my mind, but talking with my oncologist helped me feel better about having the reversal now. I had actually posted a thread here asking for input for that decision. This thread is wondering about the healing process etc, after the reversal.

Jane
Stage IIIC rectal cancer, dx 12/07
Interrupted 5 week 5 FU and daily radiation treatment suspended in the 5th week, due to adverse reaction to radiation
Emergency temporary loop ileostomy Feb 2008
Low Anterior Resection April 2008, 11 of 22 nodes positive
FOLFOX in 3 weeks
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Re: Recovery time from and experience with ileostomy reversal?

Postby bigG » Mon May 26, 2008 3:29 pm

I had my reversal 12 days ago and I'm doing very well. The pain from reversal was more intense than my resection. I wasn't able to get the same dosages of pain medicine due to the fact that the pain medicine causes constipation.

The BM's started the next day. I was releasing alot of liquid. Somewhere between 12-15 times a day. Now twelve days later my bowels have returned to normal. Twice a day with regular stool.

I was in the hospital for exactly 7 days. If my blood coagulation times were better I think my stay would have been a little shorter.

Overall, I'm so glad I had the procedure done. I have no regrets. Also, It feels really good to sleep on my stomach again.

Good Luck
bigG
Stage IV - diagnosed August 15, 2007
Liver/Lung mets
Colon resection - September 1, 2007
xeloda+avastin

It's not the size of the dog in the fight, but the size of the fight in the dog!
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Re: Recovery time from and experience with ileostomy reversal?

Postby janeandrea » Mon May 26, 2008 5:00 pm

Thanks so much for your reply, that is good news to hear! Not about the worse pain, but the relatively normal bowel movements. I see you had a colon resection...so you still have your rectum?

I have rectal cancer, and most of my rectum was removed, though I still have my sphincter. Anyone out there who had/has rectal cancer who can tell me their experience?

Thanks again, this board is a great resource.

Jane
Stage IIIC rectal cancer, dx 12/07
Interrupted 5 week 5 FU and daily radiation treatment suspended in the 5th week, due to adverse reaction to radiation
Emergency temporary loop ileostomy Feb 2008
Low Anterior Resection April 2008, 11 of 22 nodes positive
FOLFOX in 3 weeks
12/07 dx RCA3C
2/08 FOLFOX
2/08 bad rad, ER ileo
4/08 LAR
5/08 ileo td
6/08-2/10: 7 surg
09 lung mets, undx IV
9/10 failed RFA, dead 15 mins
6/12 growth, start Xeloda
8/12 add Avastin
11/12-10/13 break
10/13-1/14 xel/avast
1/14 irinotecan
2/14 Stop all
janeandrea
 
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Location: Chandler, AZ (moved here Nov 2011 from Chicago, IL)

Re: Recovery time from and experience with ileostomy reversal?

Postby HDLadyRider » Mon May 26, 2008 7:05 pm

First of all, best of luck to you with your upcoming reversal. My husband did NOT have rectal cancer, however, he did have an ileostomy reversal on May 5, just 7-8 weeks after resection of liver and colon. He had some very rough moments the first few days in the hospital but once everything was under control it began to get better. His hospital stay was 9 days. He has spent a LOT of time on the toilet, sometimes upward to 20-30 times a day. He takes immodium to keep it under control if he needs to leave the house. Today he managed to change the oil in three motorcycles. I had to do all the moving of the bikes for him because he is still on weight restriction, he is now totally whooped.

The down-side which several people on this board warned about is that he is putting off chemo because of the bowel issues. He said he can't deal with both the way he's feeling. He has been off chemo since the end of January which is beginning to make me nervous.

Obviously though, not everyone has problems with the reversal. I hope all goes perfect for you. Keep us posted, please.
Hugs...
Husband...Diagnosed Sept. 07 Stage IV
Chemo until 1/29/08
Surgery on 3-17-08 - Liver/Colon Resection
Ileo reversal 5-5-08
6/08 New tumor growing in liver/More Chemo
NED since 10/08
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Re: Recovery time from and experience with ileostomy reversal?

Postby irish » Mon May 26, 2008 9:05 pm

I had my reversal in November. I have to be honest with you - I am more depressed with having the reversal than the bag.
I had majority of the rectum removed so the storage is not what I had before. Many accidents have occured since the reversal. I am slowly getting control. My doctor just suggested to use some fiber products to bulk up.
Good luck and you will be in my prayers.
Stage IIB - Rectal Cancer / Diagnosed Nov 22, 2006
6 Surgeries in 16 months. NED in Jan 2008.
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Re: Recovery time from and experience with ileostomy reversal?

Postby vancouver eve » Mon May 26, 2008 11:58 pm

Have all people that had the reversal done been given little pain medication. I will be getting the reversal and I hate to think it is worse than the first operation. That was a large incision but I had the pump for pain.
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Re: Recovery time from and experience with ileostomy reversal?

Postby DeeDee » Tue May 27, 2008 8:43 am

My tumor was at the junction of the colon and rectum so I had part of my rectum removed. For me the reversal surgery was a breeze. I had very little pain and wasn't using any pain med by the time I left the hospital. I was in the hospital for 7 days because my system is very slow to start up after anesthesia. From a control standpoint the first 3-4 weeks were pretty rough. I alternated between constipation and severe diarrhea. At about a month out it started to normalize and the bad days became less frequent. At about 6 weeks I was doing well enough to travel for my job. I still have more frequent bowel movements (5-6 per day) but otherwise things are pretty much back to normal. The worst part of my recovery was deal with an anal fissure I developed soon after the reversal. If I didn't have that the reversal would have gone pretty smoothly.
Hugs,

Dee
Stage 2 Rectal Cancer
Tomo Radiation and resection 12/06
Folfox stopped after 3 due to toxicity
Ileostomy reversal 04/07
NED
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Re: Recovery time from and experience with ileostomy reversal?

Postby frank2001 » Tue May 27, 2008 4:24 pm

Thank you all for your comments regarding ileostomy reversal...I have had my bag on since March 11 and was hoping to have it reversed on June 11....but oncologist wants me to continue with my Chemo for a couple of months longer. Not something I was very happy with but going along with his advice...I am very happy I was sent this site from the American Cancer S. ...I have always had a million questions since I was diagonosed with Rectal Cancer back in Nov 07...and its good to come to this forum to ask or post a question....Thank you all for you comments..Frank
Frank
Colon/Rectal Cancer Type 3
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Re: Recovery time from and experience with ileostomy reversal?

Postby janeandrea » Wed May 28, 2008 10:33 pm

Thank you all so much for your input and help. I was grateful to read about some positive (relatively speaking) experiences ater reversal.

I had my reversal surgery yesterday morning (May 27), and so far so good on the pain front. Hurts, but well managed with my PCA. I have not yet had anything traveling the newly re-configured inside plumbing, but hopeful that will occur in the next couple of days.

I am so glad to have that bag gone...I think I will feel less of a "victim" without the bag hanging off me, and the bulky clothes that went with it! :)

Again, thanks all, and please feel free to continue to add to this thread. More real-life been-there-done-that experiences, the better!

Jane
12/07 dx RCA3C
2/08 FOLFOX
2/08 bad rad, ER ileo
4/08 LAR
5/08 ileo td
6/08-2/10: 7 surg
09 lung mets, undx IV
9/10 failed RFA, dead 15 mins
6/12 growth, start Xeloda
8/12 add Avastin
11/12-10/13 break
10/13-1/14 xel/avast
1/14 irinotecan
2/14 Stop all
janeandrea
 
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Re: Recovery time from and experience with ileostomy reversal?

Postby Sally1898 » Wed May 28, 2008 11:04 pm

Hey Jane--
Glad to read you're doing well! Spoil yourself for a few days, get lots of rest so you can heal, and feel even better, sooner. Take care, Sally
Dx:St. 3 rectal ca. on 1-8-98 at age 31. Perm. colostomy,friends refer to it as 'Pedro'.Favorite sentiment:Poop happens!!!
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Re: Recovery time from and experience with ileostomy reversal?

Postby janeandrea » Thu May 29, 2008 6:33 am

Thanks, Sally! I don't think I can do much other than rest right now (and take few walks)! The pain at the incision site/where the stoma was, is pretty relentless and flares up quite a bit when I move. But I am taking my pain meds, which control it, and I know surgical pain goes away pretty quickly.

Will write more later, in an email

Peace,
Jane
12/07 dx RCA3C
2/08 FOLFOX
2/08 bad rad, ER ileo
4/08 LAR
5/08 ileo td
6/08-2/10: 7 surg
09 lung mets, undx IV
9/10 failed RFA, dead 15 mins
6/12 growth, start Xeloda
8/12 add Avastin
11/12-10/13 break
10/13-1/14 xel/avast
1/14 irinotecan
2/14 Stop all
janeandrea
 
Posts: 314
Joined: Wed Apr 30, 2008 6:47 pm
Location: Chandler, AZ (moved here Nov 2011 from Chicago, IL)

Re: Recovery time from and experience with ileostomy reversal?

Postby NWgirl » Thu May 29, 2008 1:29 pm

I'm glad you are doing well Jane. I plan on having my ileostomy reversed towards the end of this year. My chemo won't be done until the end of August and my kids birthdays are in September and October. I want to wait until after their birthdays to have my reversal surgery so that I can enjoy their special days. Not that I'm thrilled to wear the bag, but at least I know what to expect and how to manage it. I had all of my rectum removed, so I am anxious to hear how your recovery goes. Fortunately I'm a stay at home Mom and I work in the yard/garden a lot - so sweat pants and a baggy t-shirt are my clothes of choice even before the bag came along! :-)

I hope you continue to do GREAT on your road to recovery and the new you. Please keep us posted and take care!
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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Re: Recovery time from and experience with ileostomy reversal?

Postby DottieS » Thu May 29, 2008 5:13 pm

I had my ileostomy reversed in June of '07. First couple of weeks were erratic. Right now, almost a year later, my bowel function is pretty OK. I am careful of what I eat with the help of a nutritionist. I do have occasional bouts of near constipation and sometimes too frequent bowel movements, and don't know what to do about that. Usually I have about 5-7 bm's a day and they are formed. Have not had diarrhea. I have part of my rectum remaining. Good luck to you. I also had to stop radiation after 5 of the 6 weeks due to adverse reaction. Wound up in the hospital for 4 weeks with acute colitis!!
Rectal CA Stage 3C at age 66
diag. 7/06, 5 weeks radiation & 5FU
resection 11/06, 8 of 11 lymph nodes
8 rounds 5 FU & oxaliplatin
takedown 6/07
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