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Ileostomy reversal - Please share your experience


Thu, April 30, 2020 11:45 AM

Hello,

Recently, I had a colectomy (due to Crohn's Disease) in which my entire colon and much of my rectum were removed. I was given an ostomy and recovering well.

Prior to the colectomy, my surgeon recommended carrying out the surgery in 2 - parts: removal of the colon and then the reversal (reconnecting the small intestine to what is left of the colon). After talking with both my surgeon and gastroenterologist I am receiving a disclaimer of how often the bowel movements can occur if I move forward with a reversal (on average 6 times a day and perhaps more).

I would love to hear the experiences of those who went through a colectomy and moved forward with the reversal. All experiences shared are appreciated.

Thank you!

FPO ceehand
Joined Apr 30, 2020

Tue, March 16, 2021 12:19 PM

Reply posted for generic00.

It takes about a year to heal.  Try baby diaper rash creams.  Butt Paste is a strong brand. I knew a guy who mixed bees wax in with diaper cream. He gave me some and it was the best for protecting my butt. Your dr. May be able to get you a prescription cream. Believe me, it will get better and you don't want to go,back to,a bag. Those are so limiting and in the end, theynalwaynbreak.

FPO charbs
Joined Oct 31, 2016

Wed, September 16, 2020 12:12 PM

Reply posted for ceehand.

July 2019 I had the total colectomy. Home within 5 days, pouch on stomach.

November 2019 2nd surgery to build internal pouch (also needed to lose 50 pounds and visceral fat). New ostomy, has to kinda re-learn how to seal the bag on stomach.

February 2020 3rd surgery to do reversal, small intestine connected to rectum. Learn to use bathroom again.
Horrible rough toilet paper in hospital, really hurt my unused hiney. 
But ... home in maybe 3 days (maybe 5). Lots of walking , lots of water and gatorade.
Tylenol as the only pain med.

It is Sept 2020 now, 7 months later. I do not think I am fully healed.
Within a few weeks I ended up with hemorrhoids (I have never had those in my life).
Visiting about every 3 weeks got a shot of Phenol into the hemorrhoids.
Developed painful diaper rash, visually diagnosed as Candida (yeast infection), given Flucanazole oral, and Clobetasol topical.
In August 2020 went to Dermatoligist for Candida, topical powder Nystop (Nystatin) used to 
treat and made huge improvement within 3 days.

My concern rigt now is that I go to the bathroom seems like 6 times from 6am to 9am. 
Still have pain outside the anal area. I feel like the pouch is fine and the surgery part worked.
I think there is still some hemorrhoid (it was internal for sure, and some external).
 
I am 61 years old. And no one will tell me how long this will go on, I am mean, if it might take
a year to get back to normal (less pain, maybe a little more control) then I can prepare for that.
But it seems like every single person is different and some heal better/faster than others.

There was talk of reversing this surgery, putting a permanent ostomy bag on stomach.
But my life goal was to be free of needing appliances, medicine, doctors.
I am determined to make this work. 
But I am curious if anyone else spent months working back to feeling better.
Or is everyone who has this surgery bouncing back in a month or so ?

Thank you to everyone for yourt answers and support.

FPO generic00
Joined Sep 16, 2020

Wed, July 01, 2020 2:06 PM

Reply posted for Davidg.

Hi there,

I had pain for years and was undiagnosed, then things went sideways fast in the begining of 2019 my symtoms go so bad I was russhed to hospital and they did a total colectomey and setup the ileostomy. I really didn't like that setup but was so glad the pain and discomfort was gone( i spent more time in tbatroom then outside of it). I was told about the reversal and that if things didn't go right i could still wake up with the bag only permanent this time. I still went forward, the bag thing was just not a choice I wanted to live with. I had the reversal later on that year. I at 50 my body had a hard time bouncing back. I spent almost 3 weeks in the hospital. a week and half being fed from an iv, finally i was able to eat and i got stronger and did a lot of walking aound the hospital floors. when i was discharged and got home i really didn't know what to expect. Had to whatch what i ate and my body had to relearn how to do all the functions i never thought about (especially, gas could never be sure it was gas or not (dont take a chnce on it)). going to the bathroom for me on average was 6-11 times a day (once at night). I have had a couple rounds of pouchitis which is no fun (in bathroom 12-20 times a day) took a lot of cipro,in fact taking now still. even after all this i am still healing (hasn't been a year) I am still glad I did the reversal, i just absolutley hated the ileostomy. now I average about 5-9 bathrooms trips a day somedays are better and 3-5.

FPO Davidg
Joined Jul 1, 2020

Sat, June 20, 2020 12:24 AM

Reply posted for ceehand.

Hi there,

So glad to hear that your surgery went well! I had a total colectomy due to Ulcerative Colitis in three parts. The first two surgeries were 6 months apart, and I was so happy to be living life again, that I held off for 5 years to get the reversal. In hindsight this was a mistake. The surgery went well, but the recovery, especially after that time, was didficult for me. I still have some bad days, but nowhere close to before the surgery. Keeping a consistent diet was key for me. 

Hope that your next step goes well!
Jason


 

FPO TheBigLeebowski
Joined Jun 20, 2020

Wed, May 13, 2020 9:53 AM

Reply posted for Carlz.

Right after surgery I must admit, my pain was limited. I actually felt less pain and took less pain medication than a hospitalization with a Crohn's flare-up. I used pain medication each day for up to four weeks post-surgery. After that, the pain was manageable and eventually subsided completely after six weeks post-surgery. I do not recall very noticeable gas pain. I think the pain varies for everyone. I felt no different than undergoing my c-sections and was able to mentally prepare a lot better because of my c-section experiences. 

FPO ceehand
Joined Apr 30, 2020

Sat, May 09, 2020 9:25 AM

Reply posted for ceehand.

The collectomy is the hard part. After the take down surgery it takes about a week or so for your digestive organs to wake up. You'll have to re-learn to fart, among other things.it took me about a year to fully heal. I had the occasional sharp pain in my abdomen, like I was getting poked with knitting needles.  It all slowly went away.

FPO charbs
Joined Oct 31, 2016

Fri, May 08, 2020 8:18 AM

Reply posted for ceehand.

Hello, I'm sorry I am not able to answer your question. I hope you don't mind I wanted to ask you how Long were you in pain & gas pain after surgery? My brother is almost 3 weeks post surgery getting colon & rectum removed & he is still in so much pain. I was wondering if this is normal? I'm so very worried. I am also curious to see what ppl share about your question because he will also be in the same boat in time where he will look at reversal j pouch. Thank you so much. I wish you all the best! 

FPO Carlz
Joined May 2, 2020

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