Ileostomy for Colonic Inertia - Seeking Reassurance and Advice

Hi Everyone

I'm sorry to be so needy on here. I think this is my second post seeking reassurance, so thank you all in advance. I will try not to make a habit out of this.

I'm starting to have a lot of doubt that an ileostomy for my slow colonic constipation won't work, and I'm seeking reassurance.

Also, I've read on other forums that the slow transit can migrate from your colon to your small intestine once the colon is removed, which scared the heck out of me. Is this true? Is there any way to prevent this?

I'm desperate for relief and to get my life back, and I was so hoping an ileostomy would do this.

Thank you all.

Molly

Hi Molly, we've got to get you to stop apologizing for asking questions 😉 I know we've talked a little, but I wanted to respond here because you asked a question I think a lot of people would have after reading what you have online. So, and this is just me, I stopped reading stuff online that couldn't be verified. My body didn't follow a textbook for how the colon was attacked and nerves killed. I can't remember, do you have a good GI motility doctor? Not a general GI but specific to motility, especially when the cause of dysmotility is unknown? For me, and this is only me, my doctors say they don't know if it will spread because there are so many unknown variables. My current GI doctor tells me to take the win with how I'm doing right now. I have a good motility doctor I can recommend 😉 Look for studies that are specifically about the connection between brain-gut function.

I don't have any experience with colonic constipation to offer. I just want to say the same basic thing as CC. There is never, ever any need to apologize for asking questions here, even those fraught with fear and trepidation. One of the major reasons for this site is to offer support to the community of ostomates, and we are as varied as they come. :-)

Daniel

Please don't apologize. All questions are welcome. Like CC said, get yourself a specialist doctor who is experienced in the intestinal issue affecting you. Not a general doctor. We are all different. You need to be examined, tested, and diagnosed. Only then can a treatment plan be formulated. Don't waste time worrying about "what might happen." Get the facts about you. Then work from there. Good luck.

I had my colon and rectum removed. Total proctocolectomy. Mine was due to very severe constipation, and now I go quite well with no issues. Actually, we can use foods to make our output runny or thick. We can use warm drinks, etc.

I'd say if they have done all the tests and you have exhausted all options, then go for it.

We all have our own unique issues with our constipation, so I would not go by the bad things online.

Maybe you can try a temporary ileostomy before removing the colon to see if that works for you first. That's how they did mine, but because I still had my colon, I was still producing mucus, and that was hardening up like the poop, so that's when I said, "Okay, let's go for the whole kit and kaboodle," and had everything out.

Don't be afraid. If you're in pain and your quality of life is suffering, put your anxiety aside.

If you go for the end ileostomy, have them take the rectum and stump as well, so you don't have any issues with that thing down the road.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi Mollo, yes, please stop apologizing! Your worry is normal, but I think it's unnecessary. There is so much misinformation on the net that it will drive you crazy if you let it. There are probably lots of unknowns as well, when it comes to ostomy outcomes for all the differences in each individual circumstance. I can tell you that I got my ileostomy due to colonic inertia, and that in my case, it's been three years and seven months and there has been zero sign of the inertia spreading to my small bowel. I can control how thick or thin my output is from diet and liquid consumption. Nothing has changed since day one. Could it? I suppose anything is possible. Life is not without risk as we all know. If you have been properly diagnosed and you trust your surgeon, you need to have faith. My ileostomy made a huge positive change in my life.

Terry

Have you been seen at the Ferguson Clinic in Grand Rapids?

Hi

Thanks for responding again. I have a GI doctor through the University of Michigan. I'm currently at Mayo Clinic having testing for surgical options and have two appointments at the end of June to meet with a GI doctor and colorectal surgeon at Cleveland Clinic per your advice.
Did your GI doctor or surgeon ever mention the possibility of inertia moving to your small intestine as well?
Thank you again, CC

Thank you, Terry. This is very reassuring. Do you know the cause of your constipation?

Did they test your stomach and small bowel to make sure they had normal transit before your ostomy?

Hi Hibiscus

Thank you!

If you don't mind my asking, I have a few other questions.
1. What was the cause of your constipation?

2. Did the doctors check the transit time of your stomach and small bowel before performing your ileostomy?

3. Did they ever mention the possibility of the problem with your colon transferring to the small intestine or stomach?

4. How long did you have your temporary ileostomy, and how long have you had the permanent one?

Thank you

Daniel

Thank you for your kindness and understanding. This really is an incredible forum. I don't know what I would have done without it and all of you these last several weeks.

Molly

No, but I will check it out.

Thank you!

Thank you for the great advice!

So true, get everything taken out when having the ileo. One time. First time. With a sewn-up Barbie butt.

It seems troubleshooting with a temp ileo sounds like good advice. First. So she may need the second operation later.

Each case is unique. Also, pardon the pun, a crapshoot.

Constipation, I thought, was all about diet.

If all other avenues fail, a proctectomy should be a last resort.

Good luck to her.

We are here to help.

Molly, you are right to have concerns about surgery for your slow transit constipation (STC). Surgery should be a last option and only if you definitely have STC. It does not migrate to the small intestine; rather, you can have slow motility in your small intestine as well as your colon. If surgery is chosen, the most common and most successful surgery is a complete colectomy with ileostomy. If you are not sure, you can choose to have a loop ileostomy while leaving the colon intact in order to determine if an ileostomy improves your condition. In order to have more informed information, I have enclosed some research papers you may want to peruse:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10819559/

https://onlinelibrary.wiley.com/doi/full/10.5694/mja18.00241

https://onlinelibrary.wiley.com/doi/10.1111/apt.13415

 

Hi Mollo, I will never know what caused my 'constipation,' I guess. I do know that I always had normal bowel function and never gave having a bowel movement a second thought. That is until I returned from a five-month trip to Europe in 1973, backpacking and staying in cheap pensions, etc. I got a couple of pretty extreme cases of diarrhea while there, but so did my travel companions. I began to notice a change shortly after I returned home. It just got worse over the years. I tried every new drug on the market, and some would work for a short time, then not. My gastroenterologist said I had a 'lazy bowel,' probably the most accurate diagnosis I ever got. I had every test available, including transit time tests. I sometimes wonder if I picked up some kind of bug that just lived in my system and slowly killed my colon. Who knows? It got to the point where finally, in 2019, my bowel perforated, and I needed emergency surgery. They gave me a colostomy, which was a disaster because my colon didn't function any better with a colostomy than before. My surgeon suggested a loop ileostomy, keeping my colon intact in case the ileostomy didn't work any better. It worked perfectly from day one and continues to do so. No, I didn't have any transit test prior to the ileo, but I had a safety net with it being a loop. I lived with the loop for nearly a year before they removed my colon and closed up the old colostomy site. My advice to you would be to start with a loop ileo. Then you know you can always go back.

Terry

Warrior

Why do you recommend getting it all out and a Barbie butt? What's the benefit?

I still have a lot to learn.

Thanks,

Molly

Thanks, Terry
This is very encouraging!

Wow!

A traveler, I can't thank you enough. I love to research myself and can't wait to read what you've sent. Please feel free to send anything and everything you think might be helpful.

Thank you so much
Molly

Hello

They never did find out the reason. I had one doctor say it could have been from medication for anxiety that destroyed it. They suspected maybe adhesions as I had a nephrectomy, 2 C-sections, and an ovarian cyst removed. Abdominal surgeries. So, adhesions maybe from prior surgery. My hernia doctor said I did have many, but that surgery was after my ileostomies. So it could have been that. They won't just open you up to look for them. I had an ileus for months before my ostomy surgery, unknown why.

Also, at Cleveland Clinic, they have you see a psychologist before surgery who only works in their colorectal dept. She says stress can do this to our colons, so she gives a website of hers for stress reduction. She does not have a say so if you're getting surgery there, but she's there for stress, etc.

Yes, they did all the testing prior for my transit, etc. Many tests. The pill that's a camera, the radioactive eggs, and more.

They never mentioned the constipation moving to the small intestine. I did ask, and he doubted that would happen, and it did not. You can literally control the poop by food. Bananas, rice, etc., for thicker and coffee, pop, etc., for liquid poop. Most ileostomies do have liquid, although I tend to have pasty. Not constipation, just thicker. I can thin it down by drinking a Diet Coke, but then I get gas, lol. My gas is not painful at all; it just fills my bag with air. I just have to open it carefully and let the air out.

I had the temporary for 2 years, and when we did a colonoscopy, they determined the colon was not working, so we did the end ileostomy with rectum removal. I had lots of rectal pain before my ostomies. I think it was 2019 when I got my end ileostomy.

If you get an end ileostomy, there is no turning back, so there is no need for that rectum to stay. Some doctors leave it with some stump of sort that people have issues with, so have them take that stuff out along with it.

I hope I answered all your questions. I'm glad you're using Cleveland Clinic for your colorectal surgeon, and the floor they put you on is all colorectal floor, and they are wonderful! They actually come in if you ring the buzzer. Great staff, and the nurses know what they are doing. Stoma nurses come in to help with the bag and teach you as well. It's really an amazing hospital floor. Never seen one so good as that colorectal floor.

Hello! You are the first person that I have ever heard mention Colonic Inertia. I was diagnosed with that in the late '90s and had 85% of my large intestine removed. My life changed drastically for the better, including running over 35 marathons, 20+ half marathons, and numerous 5k and 10k races, and I attempted 2 ultras. The ultras were still too much for my gut. I even attempted roller derby. Then, 1.5 - 2 years ago, it started going downhill, and I'm facing an ileostomy. But my current condition is really interfering with my activities and quality of life.

I hope you find the answers you need and get the treatment to help you.

 

I had a lifetime of problems with reduced motility/inertia. Many surgeries, including 12 years with an ACE stoma, before that gave up and an ileostomy was the only option (about 8 years ago).

I've never heard of inertia happening in the small bowel. I often need to slow things down to avoid dehydration, but there are plenty of ways to do this.

Hi! I'm from Michigan too! My story mimics yours so much. I too had colonic inertia and went to U of M Hospital, and then Mayo Clinic. I started out with a temporary ileostomy and it changed my life so much for the better that Mayo Clinic did a permanent ileostomy and removed my colon. That was in 2006 and I have had no further issues with inertia. My life did a 100% turnaround. I can do everything that I did before and then some! I bike, I hike, kayak, and downhill ski. I travel all over the world and my ostomy goes with me 😊 offering this as encouragement to you. Maybe we could become friends 💜

Susie Clou

This is amazing!
I pray this is what can happen in my life. I've had some really low moments lately and hearing stories like yours brings me so much hope.

Do you recall the name of the surgeon at Mayo?

Do you know what caused your colonic inertia?

Where in Michigan are you? I would love to become friends! 🙂

Hi Amelia,

Thank you for responding!

I got my ileostomy because I had severe constipation as well as having muscular dystrophy. Getting my ileostomy was the best thing I did as my life is so much better. I hope all goes well for you.