Mucus Issues with a Permanent Loop Ileostomy

Hey everyone

I have a permanent loop ileostomy for a little over a year. In that first year, I only passed mucus maybe three times total.

But for the past two weeks, I've been passing mucus every single day, and it's starting to get pretty painful. This is totally new for me, so I'm a bit thrown off.

Has anyone else had this happen after things were quiet for a long time? Any idea what might cause it, or if it's something to worry about versus just an annoying thing we have to deal with? I'm trying to figure out if this is worth a call to my GI/surgeon or if it's more of a “welcome to ostomy life” thing 😅

I would really appreciate hearing your experiences. Thanks

Have no answer for you but hoping someone will come to your rescue…jb

Clara, I have a Barbie butt, so no mucus for me, but I'm sorry you're experiencing this, especially with pain. I hope you get some empathetic, informative responses soon.

G-Day Clara,

Because you kept your anus and rectum, it will keep making mucus. You're still young, so having all that removed might be hard to accept, but that would stop all the mucus, and as your ileostomy is permanent, it would also stop any chance of rectal cancer.

I hope some of the ladies will explain another reason, which I will leave to them.

Regards, IGGIE

Hi ClaraD,

Hubz has a loop colostomy since August and wasn't told about the mucus in advance.

We understand it now, but because he's in treatment for rectal cancer, passing mucus is sometimes painful.

The intensity of pain has changed recently, sometimes better, other times worse, so his oncologist scheduled him to get checked by his GI this Saturday.

Our take is if something changes or seems odd, it can't hurt to get checked out. 🌻

Living with Your Ostomy | Hollister

I had this same issue, so my surgeon had to remove my J-pouch and gave me a Ken butt and made my ileostomy permanent.

Hi Clara, mucus is normal; some get a sort of "plug," some liquid. I get one or the other usually. I pass it every time I empty the bag. When you say painful, do you mean external irritation like nappy rash or internal with an urgency? If the latter, it may be one of several irritations that can happen. Stop in at the docs; you may need some meds to treat it.

Hi.

I've got an ileostomy and was told that I might occasionally pass the mucus. It's happened a few times since the operation in February. As mentioned, if you have some rectum left, it will still produce the mucus.

It was rather odorous, I must say, but I haven't had pain.

Hope you are okay now, but if not, maybe phone your stoma nurse?

Mine has been brilliant. Any problems we have, we just phone or WhatsApp images, etc.

Keep us up to date.

Tony😊

Before my ileostomy surgery, my surgeon actually recommended that I leave it all intact during my childbearing years. My understanding was that removing it at this point can cause complications, fertility issues, among other issues.

It is an internal pain, almost like something pulling that makes even sitting so uncomfortable. It's hard to describe because I cannot compare it to any other pain, but it is definitely internal.

I will try to get an appointment with my GI to discuss it.

I just saw my surgeon for this. When she said surgery for a Barbie butt was about 8 hours, I didn't want that at this time. I had a permanent end ileostomy about 8 months ago, and the surgeon explained it was called "stool balls," that my body is releasing mucus leftover from surgery, basically. She recommended glycerin suppositories or a Fleet enema once a week for a while, to help clear it out. If it persists, there's an outpatient procedure where they can clean you out. Best of luck to you, and Happy Jingle Balls!

G-Day Clara,

That's why I said leave it up to the ladies to tell you.

You're only 39; are you married? Are you thinking of having a child?

Give a Barbie butt some consideration after you have a new little Clara.

If you're not married, well, it happened once before at Christmas. Good luck.

Merry Christmas, IGGIE ✨✨🎈🎇

Clara,

Mucus is normal, but pain is not. It wouldn't hurt to get a sigmoidoscopy just to be sure everything is okay. I had a form of colitis in my rectum, and the doctor prescribed medicinal enemas. I wasn't thrilled with the idea. I would suggest suppositories instead. It did, however, clear the colitis. Hope this helps.

-Bain

Iggie, I had a double loop ileostomy 6 months ago, rectum removed, and had mucus occasionally, but today, I actually thought my pouch had leaked; however, when I went to the bathroom, I discovered a lot of discharge from the anus, which looked like it should have gone into the pouch! It terrified me.

The inner surface of the digestive system is called the "mucosa," and for good reason. It continuously produces mucus to protect itself. This is why the stomach and the small intestine do not digest themselves, in spite of being subjected to enzymes that digest food. The mucus also acts as a lubricant. The digestive tract continuously releases mucus, whether through the rectum and anus or through a stoma.

Thank you. I have an appointment with my GI for the end of January. I hope she will be able to recommend something, but your experience definitely helps me go into the appointment informed.

Thanks IGGIE

I am married and have two children born before I became sick ten years ago. I would love to have another if I can.

I wonder how that would work? How would prep work with a stoma? Wouldn't it all come straight out of the bag? Can they even perform a colonoscopy on us?

So long as there is an opening to the digestive tract, a "scope" can be inserted to view the interior of the system. To observe the stomach and duodenum, for instance, an "upper endoscopy" can be performed by inserting the endoscope through the mouth. And to view an intact rectum and colon, a "colonoscopy" can be performed by inserting a colonoscope through the anus. And I, on more than one occasion, have had an "ileoscopy" performed by inserting a "scope" through my ileostoma. This is often done in conjunction with an imaging study, such as an MRI after drinking contrast fluid. Indeed, surgeons don't even need an existing hole to peek inside the abdomen. For minimally invasive surgery (laparoscopy, also called "keyhole surgery"), a laparoscope is inserted through a small hole in the abdomen made by the surgeon to take a sightseeing tour through the peritoneal cavity to remove or fix anything that might have gone astray.