What is life like living with an Ileorectal Anastomosis?

Welcome, @emmy1207. I added your question to the Ostomy support group as well as the Digestive Health group. You may also be interested in this related discussion:
- Anyone else have a subtotal or total colectomy with ileorectal anastomosis? https://connect.mayoclinic.org/discussion/subtotal-colectomy-wileorectal-anastomosis-support/

Along with the kind replies you've already received from @suzeworld and @mo22, I'm also tagging @ellemorgan @bluehedgehog @annewithane @nobletype @bermuda56 @bevjoy @grammam @rjmobe, who have experience with a total colectomy and ileorectal anastomosis.

You may wish to search discussions related to your questions in the Ostomy support group here: https://connect.mayoclinic.org/group/ostomy/

Emmy, is your team recommending an ileorectal anastomosis or ileostomy for you?

Hi. I had the surgery you're having (TC-IRA) 2 years ago in August. It was robotic assisted, laparoscopic. I was terrified as well. But, it went extremely well. I was in the hospital for 2 nights, released to drive within the first full week. I was walking a mile in 10 days. I was sore, but the laparoscopic really helped.

I live a completely normal life. I'm active, take long car trips, go out and about. It was an adjustment, but a positive one for me as it was necessary. I had no choice but to embrace it.

Initially, you will eat soft foods and will be using the bathroom quite often. But, it got better. What I have learned is that it's extremely important to take it slow with your food choices. I went thru many trial and error pts. We're all different. But, maintaining the rectum is the key to this surgery IMO. I am not incontinent with my BMs. Sometimes, I need to go NOW, but I manage to get to a bathroom in plenty of time.

My surgeon told me to eat fiber (35 gr per day) to teach the small intestine to do the job of what the large intestine used to do. I asked him if soluble or insoluble, and he said it doesn't matter. That gave me a perspective that I believe helps me.

Fiber:
I tried psyllium husks (Metamucil), but it worked for a little while, but I started to feel a little sick. It's a sequestrant which means that it may block absorption of vitamins and medications. I believe that it did that for me. I stopped and the bloating feeling went away.
I explored the use of Hydrolyzed Guam Gum) starting very slowly. I stopped it because I was getting very gassy. Gas hurts more than it used to. I guess it's because the large intestine carried to gassy load more and now it's up to the little guy!

I eat small meals. It really helps. Every few hours, I eat a little something.

I now eat this in the morning and before bed: a bowl combining all-bran cereal, greek yogurt (no fat or 2%), some canned or peeled fresh fruit, and 1% milk. This is really delicious and I believe that it helps me during the day and at night. I very rarely need to get up in the night to use the bathroom. I do take a lactose pill with it...not sure if I'm intolerant, but I figure it can't hurt.

I have things that I just don't eat/drink anymore (it is what it is!). I can't tolerate raw vegetables, especially those which are very difficult to chew up well, such as lettuce and raw spinach. The same goes for fruits. The skins just irritate me (upon exit). The same goes for spicy foods.

ISometimes I can get away with a bit of spice, but I never know! Tomato sauce can affect me sometimes, especially if I have leftovers. Seeds and nuts also have caused me some issues.
I also had my gallbladder removed in 2008, so I have to go easy on anything too fatty.

I've always had stomach issues as well, so acid is a problem for me digestively in general. Sourdough pretzels, fig bars, and yogurt are all my go to items.

Tracking is important in the beginning. I still do it, just in case and will refer to it when I suspect something disagreed with me.

I crave salt and need to curb my sugar. And, sometimes a hamburger (not too greasy). My B-12 levels are good.
I drink a lot of water. Sometimes too much and it may cause issues, but dehydration is a concern without the colon. At times, I'll use a little sprinkle of IV solution into my water. I also like the vitamin waters and will add a little to my water for flavor.

There are so many things that I'll think about after writing this! Feel free to reach out to me with questions.

I had total colectomy with ileorectal anastomosis 4.5 years ago because of Crohn’s disease and precancerous lesions. It takes some time to get used to but I am able to live a normal life. I work full time and go out as I did before surgery. I just know where all restrooms are located just in case. I was terrified when they told me I had to have this done too. The recovery is rough but after a few months you feel back to normal.

Hi. I had the surgery you're having (TC-IRA) 2 years ago in August. It was robotic assisted, laparoscopic. I was terrified as well. But, it went extremely well. I was in the hospital for 2 nights, released to drive within the first full week. I was walking a mile in 10 days. I was sore, but the laparoscopic really helped.

I live a completely normal life. I'm active, take long car trips, go out and about. It was an adjustment, but a positive one for me as it was necessary. I had no choice but to embrace it.

Initially, you will eat soft foods and will be using the bathroom quite often. But, it got better. What I have learned is that it's extremely important to take it slow with your food choices. I went thru many trial and error pts. We're all different. But, maintaining the rectum is the key to this surgery IMO. I am not incontinent with my BMs. Sometimes, I need to go NOW, but I manage to get to a bathroom in plenty of time.

My surgeon told me to eat fiber (35 gr per day) to teach the small intestine to do the job of what the large intestine used to do. I asked him if soluble or insoluble, and he said it doesn't matter. That gave me a perspective that I believe helps me.

Fiber:
I tried psyllium husks (Metamucil), but it worked for a little while, but I started to feel a little sick. It's a sequestrant which means that it may block absorption of vitamins and medications. I believe that it did that for me. I stopped and the bloating feeling went away.
I explored the use of Hydrolyzed Guam Gum) starting very slowly. I stopped it because I was getting very gassy. Gas hurts more than it used to. I guess it's because the large intestine carried to gassy load more and now it's up to the little guy!

I eat small meals. It really helps. Every few hours, I eat a little something.

I now eat this in the morning and before bed: a bowl combining all-bran cereal, greek yogurt (no fat or 2%), some canned or peeled fresh fruit, and 1% milk. This is really delicious and I believe that it helps me during the day and at night. I very rarely need to get up in the night to use the bathroom. I do take a lactose pill with it...not sure if I'm intolerant, but I figure it can't hurt.

I have things that I just don't eat/drink anymore (it is what it is!). I can't tolerate raw vegetables, especially those which are very difficult to chew up well, such as lettuce and raw spinach. The same goes for fruits. The skins just irritate me (upon exit). The same goes for spicy foods.

ISometimes I can get away with a bit of spice, but I never know! Tomato sauce can affect me sometimes, especially if I have leftovers. Seeds and nuts also have caused me some issues.
I also had my gallbladder removed in 2008, so I have to go easy on anything too fatty.

I've always had stomach issues as well, so acid is a problem for me digestively in general. Sourdough pretzels, fig bars, and yogurt are all my go to items.

Tracking is important in the beginning. I still do it, just in case and will refer to it when I suspect something disagreed with me.

I crave salt and need to curb my sugar. And, sometimes a hamburger (not too greasy). My B-12 levels are good.
I drink a lot of water. Sometimes too much and it may cause issues, but dehydration is a concern without the colon. At times, I'll use a little sprinkle of IV solution into my water. I also like the vitamin waters and will add a little to my water for flavor.

There are so many things that I'll think about after writing this! Feel free to reach out to me with questions.

Thank so much! I’m so glad I found this forum. Appreciate it!