Living with High Output Ostomy: Encouragement and Lifestyle Tips?

Hi there,

I'm actually writing on behalf of my mother, who underwent surgery for an ileostomy about eight weeks ago. She's suffered from Crohn's for 30 years.

Everything went wrong after the surgery, despite the surgery itself being a success and the stoma being "beautiful" (-quote from the surgeon). Mom developed pneumonia and then experienced kidney failure. She spent 2 weeks in the ICU and is now back on a regular ward, doing okay. But her stoma is pouring out 3-4 liters of liquid stool a day. Today her new surgeon told her that the surgery was a mistake. She's been downhearted and unmotivated since then...as you would be.

But on further research, it seems like there are quite a few ileostomy folks living with high output stomas. It just requires a ton of work and lifestyle changes. I'm wondering if any of you have gone through something similar, and if so, if you have some words of encouragement for my mother? What steps did you take to start living a "normal" lifestyle?

I should note that she's been on dosages of Imodium and has just started Octreotide today to slow down the output and thicken the stool. But she has already been through a round of medication without much result. So, yeah. That.

I can say that eight weeks is a very short time post-surgery. It takes quite a while for the GI tract to acclimate. In normal situations, the material from the ileum, which is externalized (hence ileostomy), is in a high liquid state and enters the large intestine (colon) where much of the water is absorbed and consolidation of fecal material occurs. In the case of the ileostomy, there is an absence of a colon into which the contents of the ileum would pass. Hence, the high liquid content is released into the bag. Over time, the small intestine including the ileum will adapt and absorb more and more water. However, the discharge will still be watery and never reach the consistency of a normal fecal discharge. For this reason, ileostomates must be sure to keep their intake of water sufficiently maintained to avoid dehydration and its effects such as kidney stones. I am sure that your mother probably is not eating normally and is probably on a liquid diet. Of course, this will affect the output of the ileostomy. Over time, your mom should become much more normal as her GI tract adapts.

X_

I couldn't have said it better, Xerxes.

Mywalsh03,

That is very soon after surgery. Her body will adjust to not having a colon, but it will take time. In the meantime, she could start eating foods that thicken and/or slow down her output. Marshmallows work well. Other things I've noticed that thicken my output are potatoes, pretzels, crackers, pasta, and bean and bacon soup. Be sure she chews all of her foods up VERY, VERY well so she avoids getting a blockage or obstruction, especially raw fruits or veggies or anything that acts like a natural laxative like peanuts.

Hydration, as Xerxes states, is very important. It might not hurt to drink a Gatorade once in a while.

It takes about 5 hours now from food to stoma when I eat now, depending on what I eat. It will eventually slow down and be manageable.

Bain

Thanks so much for your response, Xerxes and Bain. It is now 12 weeks post-surgery and my mother is still in the hospital. She had 1-2 really excellent weeks where her appetite was up and her output was fantastic, but she suffered acute dehydration this week and is now in a special care unit. The doctors say it is just a "bump in the road," and hopefully things become more manageable soon. Anyway, just wanted to thank you both for your words of encouragement!

Mywalsh03,

You're very welcome! I'm sure she'll come around soon. Keep us updated on her progress.

Bain

Thank you! It looks as though her surgeon wants to operate again and move the stoma. Her output continues to be too high and last week she ended up in special care due to dehydration. Not sure what to think about it, but the doctor is confident she'll be strong enough for surgery within a few weeks.

Hi mywalsh. It's been a couple of months since your last post. How is your mom doing? I hope her second operation improved things. It's been a tough road, hasn't it?

I was in the hospital for 3 months. I went in for a colostomy reversal and ended up with an ileo. nbsp

I've experienced some of the same things your mom has. Let me know, and maybe I can ease your mind some if she's still having issues. Anytime at all.

Hi GR,

That's so kind of you to follow up, thank you. :) Mom's second surgery went very well, and she was released from the hospital a few weeks later after a long six months. But she never really recovered fully and ended up with at-home oxygen and a whole myriad of other complications from that initial surgery. I had a final year of ups and downs with her before she passed at the end of July 2019 due to multiple organ failure. Nbsp

I so hope you're doing well and have adjusted to your life with your ileo!

Oh my dear.... I am so sorry to hear this. God loves her.

I am doing very well, thank you. My last surgery was a long time ago (2011), so I am a professional ostomate.

I hope things are happy and settled for you... and thank you for replying. Take care. *hugs*