ileostomy reversal questions

katienavs

I completed my thirteenth and last round of Folfox two and a half weeks ago and am having my temporary ileostomy reversed next week. I am aware that as with most medical treatments and procedures, the recovery time and difficulties vary greatly from patient to patient. But I am still hoping to learn from some of your experiences. I have two specific questions but welcome all advice any of you may have.

1. For those of you who had a relatively easy time, what do you think was the main contributing factor to your success?
2. Did you have any trouble maintaining your weight?

Thank you so much for all of your help and advice. Although I am looking forward to life without the ileostomy, I am quite nervous about the coming months.

Katie

cherriann

hi katie,
i dont post much here but check in quite often, this board was one of my lifesavers when my journey began. i cant help you with reversal mine is permanent but you will get alot of feedback if you go to uoaa. its a great board with alot of great advice.
take care, cherri

markatger

Hi Katie,

I had mine reversed last May after having the ileostomy for almost 9 months, which was on the long end of time according to my surgeon. I had lots of fears/worried prior to including pain, frequent bowel movements and incontinence. I have been fortunate that I really only dealt with frequent bowel movements. No real pain and no real problem with control.

Sorry not much help as to why some people are lucky and have not a lot of problems. Does your surgeon think you will have any problems? They may have some insight into factors that contribute to problems. I had read some really rough stories about reversals (which can happen when you're online). My surgeon didn't really seem to have a lot of experience with problem reversal nor think I would have any problem - its almost like he made it sound like its rare to have problem with reversals?? Serious problems that is..

I do still have frequent bowel movements but sort of consider that to be expected at this point. I hope to get continue to get a little better though. But right now its workable.

Things that helped me were natural baby wipes, natural baby diaper rash ointment, watching my diet for constpating and laxative causing foods, immodium.

Best wishes
Maria

Moesimo

Katie,

There are many people on this board who have had an ileostomy reversal and have done well. You will have frequent trips to the bathroom tht should lessen with time. Be prepared to be close to a bathroom initially.

Unfortunately I was not one of those who did well after my reversal. I had my ileostomy for only 8 weeks befroe it was reversed. I continued with frequent trips to the bathroom and had diarrhea, incontinence and urgency. That left me in constant pain. Frequent tub baths and vaseline helped a little. Types of food made no difference. It affected the quality of my life and 18 mos. after my reversal I had a colostomy done. I haven't looked back. It was the toughest decision I have ever had to make. My life is sooo much better now. I am not trying to scare you, just prepare you.

My surgeon had been doing this for over 25 years and I was the first who had a colostomy done after a reversal. My tumor was very low and all my rectal tissue was removed. I have alot of damage from radiation and was left with radiation colitis.

I wish you all the best with your upcoming surgery. You can email me if you want.

Maureen

Ps I also lost weight after the surgey.

StacyGleaso

Hi Katie,

I had my reversal done 9 months after my surgery. My surgeon told me to expect changes for up to 36 months (3 years). But I had no problems from day 1. I think what contributed to this was that I didn't stray too far from the diet I had when I had the ileostomy. You obviously need to "ease" back into things like spicy foods and veggies and fruits. Plus, it's a good idea to introduce new foods (or really old foods since you're going back to the foods you ate prior to the ileostomy)one at a time. You'll want to see the affects the foods have on your body.

As far as maintaining weight, not a major problem. The thing is, you're now able to eat anything without the restrictions of the ileostomy. So a good dose of common sense will help there.

Hope I helped. Good luck!

Stacy

jenittu

StacyGleaso said:

Hi Katie,

I had my reversal done 9 months after my surgery. My surgeon told me to expect changes for up to 36 months (3 years). But I had no problems from day 1. I think what contributed to this was that I didn't stray too far from the diet I had when I had the ileostomy. You obviously need to "ease" back into things like spicy foods and veggies and fruits. Plus, it's a good idea to introduce new foods (or really old foods since you're going back to the foods you ate prior to the ileostomy)one at a time. You'll want to see the affects the foods have on your body.

As far as maintaining weight, not a major problem. The thing is, you're now able to eat anything without the restrictions of the ileostomy. So a good dose of common sense will help there.

Hope I helped. Good luck!

Stacy

Hey Guys,
My 16 year old cousin went in to have the J-pouch procedure done yesterday. In the procedure, there were problems and they had to give her a "permanent" ileostomy bag. We are looking for any possible way to have this reversed, taken out, or internalized. Do y'all know of any resources/procedures/doctors (absolutely anywhere!!!) who can help us find this information?
Thank You So Much