Immunotherapy with ileostomy

Posted by whootie911 @whootie911, Apr 21 11:39pm

DX stage 4 rectal cancer due to Mets to Para aortic lymph nodes in July 2023. I’ve completed FolFoxIri, radiation to pelvis /abdomen, and finally LAR surgery with ileostomy. Unfortunately I still have minimal residual disease so I’m currently going through immunotherapy. I’m curious if anyone with an ILEOSTOMY that has gone through immunotherapy struggled with high output —> dehydration.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

susan_f | @susanbfoster | Apr 27 4:42pm

I have struggled with high output and dehydration, although not in conjunction with immunotherapy. I've had an ileostomy for over 20 years.

Definately talk with your health care team about your concerns. Drugs that can slow things down include Imodium (over the counter), Lomotil (prescription), and opiates like codeine. Food choices can help as well. Starchy foods like bagels, pasta, rice, as well as foods with water soluble fiber, like oatmeal, applesauce and bananas can help.

When I get dehydrated I generally drink diluted Gatorade (about 1/3 strength). Full strength has too much sugar, and it can cause further dehydration. I don't react well to artificial sweeteners, and I don't think that is uncommon, so try and avoid those.

Colleen Young, Connect Director | @colleenyoung | May 3 6:39pm

@whootie911, I hope you saw @susanbfoster helpful reply. I added your question to the Ostomy support group and am tagging @angela59 @cjay and @positiveps who I believe has experience with an ileostomy and getting immunotherapy for colorectal cancer.

Whootie, have you been able to get the high output and dehydration issues under control? What helped?

gbm | @gbm | May 4 7:32am

In reply to @colleenyoung "@whootie911, I hope you saw @susanbfoster helpful reply. I added your question to the Ostomy support..." + (show)

What exactly does "high output" mean?

Colleen Young, Connect Director | @colleenyoung | May 17 1:21pm

In reply to @gbm "What exactly does "high output" mean?" + (show)

@gbm, that's a good question. @whootie911, what does "high output" mean for you?

gbm | @gbm | May 18 9:28am

In reply to @colleenyoung "@gbm, that's a good question. @whootie911, what does "high output" mean for you?" + (show)

To Colleen Young - I have no idea what "high output" means. That's why I asked the question: what exactly does "high output" mean?

Response to question from Microsoft Copilot:

"High output" in the context of an ileostomy refers to excessive fluid loss through the stoma. Typically, normal ileostomy output ranges from about 800 to 1,200 mL per day. When output exceeds 1,500 mL per day, it's considered high and can lead to dehydration, electrolyte imbalances, and nutritional deficiencies.

High output can be caused by various factors, including:

Dietary choices (certain foods can increase stool liquidity)

Medications (like immunotherapy, antibiotics, or chemotherapy drugs affecting gut function)

Infections or underlying GI conditions

Short bowel syndrome (if a large portion of the intestine was removed)

Stress or illness impacting digestion

Managing high output often involves fluid replacement with electrolytes, diet modifications, and sometimes medications that help slow bowel movements and improve absorption. If left unchecked, it can lead to serious complications requiring medical intervention.