Questions About Living with a Loop Ileostomy

Hi. I face having a ileostomy next month where they will leave my one foot of left colon in and the rectum will be left in..... I guess it is called a loop ileostomy.... I would love to chat to people who have this kind of surgery to know upfront what I will be facing.

such as:

mucus issue

how offten your bag leaks or blows

how often you empty the bag or change it

any insight so i know

Oh my goodness, I just jumped onto the site and onto your question... and I'm the first to answer. But I'm really kind of a newbie.

Welcome, tpattison! We're here for you. I'm not familiar with your surgery; I'm a colostomy girl... woke up from ovarian cancer surgery and voila! Big surprise.

First line of advice... I see you're from the USA like me. Ostomy bags are like gold... get all the freebies you can and immediately demand from your bag company the maximum number of bags allowed by your insurance. Stockpile if you have to for now; if you ever end up with extras after a couple of years, we can help with that. But you probably won't. Get them NOW.

On this site, if you click and snoop around a little, there exists LOTS of advice and tips and stuff. The MeetAnOstomate group is a GREAT bunch of people; we'll help you as we can! But if you surf a little through the site you can also stumble across some cool stuff... The "How often your bag leaks or blows" is probably out of my purview... I'm still not sure how much ileostomies and colostomies have in common. Do we even use the same bags?

As for the "Mucus Issue"...

I may be wrong in what you call the "mucus issue," but let's start here. This may not be the mucus issue you were thinking about, either. I dunno, you were pretty vague on that one, tpattison.

So let me start on about a mucus issue (perhaps not yours at all) that I have experienced that nobody else has mentioned.

After surgery, about 2 weeks after I came home with a colostomy bag and being told that I had (only) about 8 inches of colon above my rectum, I felt like I needed to have a proper poop sitting down on the toilet. And sure enough, I did! It wasn't much of a poop, but it was there. And brown. And part of me was wondering if they made a mistake, and that my colon was present and working after all. It was a surprise. I wish that someone (like, my ostomy nurse) had warned me.

But it was actually a mucus poop. I'm into this two years now, and my mucus poops seem to come less and less frequently. But when they do? Thankfully they time themselves to the old days, when the family would be GONE and I'd grab a book, in perfect peace, with no demands. And for a few minutes, I'm back to my pre-cancer normalcy...

Are your bags the same as mine but just higher up?

I change daily, but my skin could NOT handle a daily adhesive rip initially. It took about a year before I could do that comfortably on a daily basis. I think more than once daily would be crazy-obsessive-weird. At first, I changed "when needed" (I didn't know until it smelled really bad). Then I changed every 2 days, but hubby and I had a few distracted moments then...

Daily bag change is lovely. Shower. Clean. No problems. Changing before the potential leak surfaces.

Know your flow, because ostomy people DIE from blockages.

Emptying your bag is a whole different story. My hubby installed a super-power-fan into our little bathroom, which is now MY bathroom, and the kids avoid it. So I decorated it to suit myself instead of the family, and it worked out.

I empty my bag as needed. If I eat regular small meals it's predictable. If I gorge in any way I throw off the balance.

Eating less, and being fussy, and not ever wanting to have any bulge showing, I empty my bag about 6 times per day. I don't think that's "normal," I'm just fussy about that.