What is life like living with an Ileorectal Anastomosis?
I have severe diverticulitis and I am going to get my colon removed and get the small intestine connected to my rectum. I am looking for people that had this same operation for feedback, how is the recovery, will I be able to live normal, would I be confined to my home because of how many times I’ll use the toilet. Any advice will be greatly appreciated because I’m terrified. Should I just get an ileostomy? I can’t find anyone that has had this surgery in any platform. Thanks!
Interested in more discussions like this? Go to the Ostomy Support Group.
Hi, it’s terrifying whenever one has to have surgery. I’m sorry that you are going through this. I wish you the best and will pray for a successful surgery and recovery.
Some years ago my husband had a terrible experience with diverticulitis and had to be brought to the ER. Surgery was not needed but suggested that he avoids small seeds, chews well, and drink water. He’s been okay without the recurrence.
My sister had some colon removed. I don’t know what the reason was since she wasn’t sure herself. She appeared to be doing okay. However, she has a lot of other health issues.
If you locate the ileostomy association support forum in the UK they have a forum with a section on “internal pouches which might answer some of your questions.
As a newbie in here, I cannot post a direct url, but search for IAsupport dot org.
There is a lot of varying experience there.
I had a temp ileostomy back in the day. The out put from the small bowel is WET. Like very runny.
Personally I would want to know much more about what to expect with this proposed surgery. Will there be much rectum? How can you control the flow??
I always thought I would rather have a stoma than deal with the small bowel output with no colon. But I never actually had to make that decision. Tbh I have quite a lot of my colon missing now and muddle through, somehow!
Tough call.
Do more research.
Good luck 💞
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?
Surgeon recommended ileorectal anastomosis
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.
OMG! THANK YOU SO SO MUCH! This is so helpful and uplifting! I really appreciate it. If you think of anything else please feel free to reply. You have no idea how much this helps. I am reading with my kids and now they feel better about it as well!
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.
Thank so much! I’m so glad I found this forum. Appreciate it!
Excellent post! Thinking positive.
Be sure you have a doc who has done this procedure many times and often.