Reversed Ileostomy 10 weeks ago. Struggling Bigtime! Help :(

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Reversed Ileostomy 10 weeks ago. Struggling Bigtime! Help :(

Postby StupidAssCancer » Tue Mar 25, 2014 5:54 pm

I had my ileostomy takedown on Jan 15th... 10 months prior I had a Jpouch created with a very low anal resection. On march 5th I was back in the hospital for a 3rd surgery to remove staples from the original surgery. My cancer was super ultra low in my rectum so the staples were killing me!
Since the staples were removed I'm still dealing with major pain, burning, pressure, stinging and very little control. What symptoms are normal of these and what is not?
I've laid in bed all day long as today has been violently painful with multiple bm's causing stinging burning and pressure and pain all inside. There is some outside pain however most is located inside. I've tried every cream butt balm etc. that they make I swear! I've even squirted straight lidocaine or straight hydrocortisone cream up there with no relief.
A perm colostomy bag is looking so very good to me as I'm struggling keeping hope alive. My PET scan is tomorrow.
I'm almost 10 weeks out and really struggling. If it wasn't for the pain, I could deal with this. But the pain is truly making it unbearable. :evil:
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

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Re: Reversed Ileostomy 10 weeks ago. Struggling Bigtime! Hel

Postby tammylayne » Tue Mar 25, 2014 7:08 pm

I am so sorry to hear you are suffering this way!!!! What does your doc say? Do they know why you are having so much pain? Is it from frequent BMs or from the staples/surgical site? Could it be something more then that????

I hope you are able to find some answers and get relief soon. Take care,,,,
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."

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Re: Reversed Ileostomy 10 weeks ago. Struggling Bigtime! Hel

Postby gtownguy » Tue Mar 25, 2014 11:31 pm

Really sorry to hear that you're having such a tough time post reversal but I'm afraid a lot of it is considered normal. My tumor was rather low down as well, and I was told nothing would ever be the same. I'd just have to prepare for a "new" normal. I dealt with all the same issues - the urgency, the lack of control, the burning & itching, the pain, the pressure, etc. You just have to give it a few months and it will improve - just takes some time.

For the most part, things are pretty tolerable now 5 months down the road. On a pretty good day, I'll hit the bathroom up to 4 times. There's still some pain and burning but rubbing Calmoseptime ointment down there really does help. And Gas-X pills help a lot with the gas and associated pain. On a bad day, I can spend an hour in the bathroom - going 5,6,7,or more times. Those are the rough days which fortunately aren't as frequent now.

I found that taking a teaspoon of fiber dissolved in a glass of water, juice, etc. at night does seem to help. Also using bathroom wipes and soaking your butt in a bath tub for a while can also help some of the pain and discomfort. Good luck! Hope some of this helps.
Sep 12 - dx rectal cancer - stage 3B - T3N1M0
Oct/Nov 12 - 6 wks daily radiation & Xeloda
4 Feb 13 - LAR w/ temp ileostomy
18 Mar 13 - install port
19 Mar - 02 Jul 13- FOLFOX chemo
23 Jul 13 - clean CT scans
26 Sep 13 - reverse ileo & remove port

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Re: Reversed Ileostomy 10 weeks ago. Struggling Bigtime! Hel

Postby jjlist » Wed Mar 26, 2014 5:37 am

i don't think that much pain inside is normal. I would report this to your surgeon. Is there any bleeding?
reversals can be difficult for some. Its been difficult for me. But the pain you are describing after 10 weeks needs to be checked into.
age 56
11/16/09 DIAG low rectal tumor ST II T3N0M0
12/21/09 chemopump radiation
3/18/10 suregry colo-anal anastomosis, no nodes,.
4/29/10 Abcess infection
6/3/10 started 12 folfox sessions completed 10.
1/11/11 ileostomy takedown

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Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Reversed Ileostomy 10 weeks ago. Struggling Bigtime! Hel

Postby Ehut » Wed Mar 26, 2014 9:30 am

I had similar issues with burning and severe itching for several weeks after the reversal. The first week was so awful I wanted the ileostomy back! I found that psyllium husk fiber (aka Metamucil) worked wonders for me, along with Calmoseptine for temporary relief.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 8+ years and counting!

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Re: Reversed Ileostomy 10 weeks ago. Struggling Bigtime! Hel

Postby davidfarmen » Wed Mar 26, 2014 10:28 am

My ileostomy was reversed on November 20 2013. entire rectum removed no j pouch. I was sure I would need to have a permanent ostomy the pain was to much I think I was insane from it. My gastrointerlogist did a colonoscopy about 10 weeks post op It only set me back to ground zero going 30 times a day just like the first few weeks after the reversal. About the first of march around 16 weeks post op the pain eased up it just happened all at once I still go 8 times a day some times more or less. things are still changing for the best I am not so worried about a permanent ostomy. there are many horror stories behind me I did not believe it got better until it did

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Re: Reversed Ileostomy 10 weeks ago. Struggling Bigtime! Hel

Postby beccab1 » Wed Mar 26, 2014 12:04 pm

Sorry you are having these issues. You may want to check out MD Anderson's Bowel Training info: ... index.html

Hope you find some relief!
My husband, Eric, dx @ age 35
Stage IIIb RC (T3N1M0), 3/10
Finished 6 weeks rad/xeloda 5/10
Surgery 7/10, Lap LAR, Colonic J Pouch, Temp. Ileostomy
Xelox (5 rounds)
Takedown 12/13/10
Clear CT - 2011-2015

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Re: Reversed Ileostomy 10 weeks ago. Struggling Bigtime! Hel

Postby mariabeauton » Sat Mar 29, 2014 4:10 pm

Hello there
I am experience much the same - 3 weeks post ileostomy reversal. I did see some blood in my stool the last few days? Is this normal? I don't think anything has grown back so soon, but the blood is a concern for me.
For those of you having bowel issues, My Dr. and Nurse told me to speed up the recovery it would be advisable to do Kegel exercises for the butt. Here is a link for Bowel Management that I am going to work with. ... c&docid=34

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