Stool from Rectum Even with Ileostomy

I'm about 5 weeks post-op from bowel resection, fistula repair, and temporary ileostomy creation, thanks to aggressive Crohn's disease. I don't know the details of my ileostomy, which is my fault because I should have asked more about it. I don't know if it was a loop or what kind, and I don't even really know how much of my colon was removed, but I do still have my colon and other parts as far as I know. I will follow up with the doctor in a couple of weeks, and I will talk to him about that then.

I'm still out of work on post-op recovery, and I'm thankful for that because I'm having a lot of difficulty mentally and physically adjusting to having a bag. I've had a lot of problems with leaks and peristomal skin damage, and I'm mentally just not doing well grasping the fact that this thing is attached to me. It basically makes me feel like a hermit, and I don't want to go anywhere or do anything. Whenever I have tried to go out, which was only a couple of times, I felt like I looked like I was packing heat. Concealed carry is common in Ohio, but I don't want people to know that I'm carrying around a bag of my poo. I have to go back to work in a little less than 2 weeks, and even though I have a desk job that's very close to the bathroom, I'm extremely self-conscious about it. So I'm working on the mental and emotional aspects of trying to grasp this, and I'm holding on to the hope that it will be reversible because my doctor has said multiple times that the plan is to reverse it.

All of that said, I have a question that maybe someone can answer. For the last few days, I have felt a weird urge to go to the bathroom. Sometimes it feels like really strong gas down below where my stoma is, like deeper in my colon. A couple of times, I've sat on the toilet because it felt like I was going to go to the bathroom. At least two times, I did. I know about mucus and have read up on that, but I don't think this is mucus. It looks exactly like dark greenish, dark grayish, chunky, wet stool and has a bad smell to it. It is nearly the same color as what's usually in my stoma bag, but it is definitely more pungent than what comes out of my bag. I believe it is fecal matter and not mucus. Is this normal for ileostomies? I don't want to call the surgeon for every little thing, because while the urge is so strong it feels like I need to pass a whole watermelon, it isn't a lot. Nothing really ends up in the bowl; it is more like a sort of chunky, wet stool only on the toilet paper, about the size of a half dollar. It has happened two or three times now over the course of the last few days, always preceded by that strong urge with what feels like gas pain down there. I haven't noticed any blood in it or anything like that.

Anyone else experienced this? I know it is not mucus, so it's got me a little concerned because I didn't think I should be able to pass stool that way after getting an ileostomy. Maybe my colon is just a workaholic, being stubborn about taking her PTO...

Hi! Does your stoma have one or two openings? Do you have any discharge paperwork from the hospital?

Hi A,

What you're experiencing is normal, just another weird aspect of the shit-bag world. It's also perfectly normal to feel the way you do about going back to work. As that famous guy Leo Buscaglia once said, “Worry never robs tomorrow of its sorrow, it only saps today of its joy.” So don't worry about what people think. You'll find that most will be very accepting of your situation, whether temporary or permanent, and ultimately you are your own worst enemy. I was as apprehensive about going back to work as you are (desk job in a cubicle scenario) and I was a bit surprised that no one really gave a shit (pun intended) that I had a bag. Just reverse the situation and if one of your coworkers showed up one day after being sick and they showed you their ostomy bag, how would it go? You'd look at it, say wow... and it would be done. Then you get right back to work. Same thing will happen to you. Nobody REALLY cares... which is good. So don't sweat it, because you'll be the only one sweating.

;O)

Hello,

What you're experiencing is normal, especially so soon after surgery. I'm 16 months post-op with a permanent colostomy. I pass mucus nearly every week or two. It's the same as you describe; strong odor with a small amount coming out. I get the same intense sensation that I have to pass a stool too, but then little actually comes out. Mucus is produced by the intestines to move food along as it's processed.

About 12 months post-op, I had a period of time where mucus stopped coming out. I thought, "OK, I guess my rectal stump is now inactive." I visited my surgeon for a stoma check-up. Part of the visit entails examination of my rectum. The surgeon probes the rectum with a gloved finger checking for abnormalities and blood. He said all looked good and sent me home. About a day later, I got the familiar "gotta go #2" feeling again. I then passed a lot of solid mucus that had been somehow trapped in the rectal area. Quite a bit came out. And now, I'm back to normal. Mucus comes out every week or two. So, if mucus production suddenly stops, it's time to visit your surgeon for a check-up.

I went back to work 3 weeks post-op. It was hard, but I took my time. I showed my stoma to curious co-workers, who were amazed the little red beast in the bag was my intestine. They were happy to have me back.

My surgeon left about 1 to 2 inches of intestine sticking out. A stoma is constantly on the move due to peristalsis. It gets longer, shorter, fatter, and wiggles around. It's a shape-changing little beast.

I developed a peristomal hernia about 6 months after surgery. So, my ostomy sticks out quite a bit. No way to hide it. I'm a little guy with a big bulge. I'm not happy about it, but I don't obsess over it. I'm lucky with a colostomy. It's easy to take care of. I've never had a major leak or bag blowout (had a few close calls at first).

I was offered reversal surgery about 6 months post-op. My surgeon spent a long time consulting with my wife and me. I decided to keep the colostomy. I'm 66 years old. If I was younger, I would have "rolled the dice."

Back when I was hospitalized and getting weaker every day, I would look out the large picture window in my room on the 6th floor. I had a grand view of Balboa Island and Newport Harbor. I could see people jogging, biking, boating, and driving. I wondered, would I ever get my life back? And through the grace of God and talented medical professionals, I'm back! My colostomy made it all possible.

So true! I had very similar (I have a loop ileostomy-3-1/2 years now) urges and small discharge as recently as a month ago… I think the ole' colon still wants its old job back - probably nothing to worry about just yet and since you have a follow-up appointment you can ask your doc. In the meantime, you have come to the right forum - grab the parachute ropes here and hang on for a little smoother landing whilst you wait for reversal.

The only thing I would add to w30bob's comment is:

Autiej, reading your post felt very much like I felt almost 4 years ago. I take no medication and in fact loathe them, however, if there was a pill that could turn on that “JUST DO IT NIKE” switch - I can assure you I would kill to be the first one in line for THAT medicine!!! jb

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi Autiej, Welcome to the site. As others have said, what you are experiencing is normal. You say you know it's not mucus, but you would be surprised how unmucusy mucus can look! I've had an ostomy for 4 1/2 years and I still produce mucus. As long as you still have your rectum, it will continue to produce mucus, which is the natural lubricant meant to move your stool along. When you had your surgery your rectum 'didn't get the memo' that its job was done. Feeling like you need to poo is normal. The amount can vary and its appearance can vary too. Mine is usually light in color and loose, but sometimes is quite dark and more formed. You can relax.

Terry

Thank you. I was just concerned because it looks like stool, not mucus of any sort. It even mimicked the color of what was in my bag at the time. I will ask the doc about it at my follow-up, but thanks for your helpful words.

Hi, for a very long time I wasn't aware of the two openings in the stoma (loop ileo). Getting the little absorbent packets (Absorbagel or Pearls) changed my life! The fluid would leak down the wrong "tube" to my de-functioned J-pouch. This fluid and actual bits of food came out my butt regularly until I started using Absorbagel. Apparently, it leaks down there because of how liquid the poop is, especially at night when lying in bed. The Absorbagel turns the liquid into a sort of sludge so it does not slosh around in the bag and is no longer watery. I have to squeeze it out of the bag if I use more than one packet; just one packet works for me. This makes such a huge difference in my life. No more shitting my pants (very little but feels like a deluge but enough to wet my pants) as I walk down the street!

Magoo ☘

Hi Auntie, before I used the Absorbagel I had Pouchitis all the time! It seems that bits of poop/food fragments stayed in my de-functioned (still in there) J-Pouch and caused chronic infection. This caused horrible cramping pain (a friend told me it mimicked PID) that had me doubled over in agony almost every day for years. My docs just shrugged! "Eventually it will stop"... it didn't. An MAO from Aus, Jo (thank you Jo), reminded me about the two stoma exits, one coming out into the bag and one going to my J-Pouch and to my butt. The debilitating pain stopped when I began using Absorbagel. The shocking thing is that most docs I told about my solution weren't even mildly interested and didn't contribute any info about this nasty problem and didn't seem interested. Pain meds were their solution! I took antibiotics to clear out the infection and with Absorbagel the poop stopped and the pain eased and also stopped after a few weeks, never came back!

Thanks to Jo for her helpful insights and info on the two holes in the Loop Ileo 👍.

Magoo ☘

Hello and welcome to the site. So I had my ileostomy in 2010. Also had problems with leakage. I now use a precut drainable pouch so I can keep it relatively flat because I empty it often. I always carry around a water bottle to rinse the bottom of the pouch after I dump it in the toilet. You will learn how to do things one-handed because you need to hold the end of the bag pointing up when wiping the water or residual liquid out. I use adhesive spray, a rubber ring around my stoma, and also stoma paste around the opening of the pouch. It's a process but eventually, your skin will get tougher and not be so sensitive to the enzymes in the digestive juices that your small bowel produces. Watch for seepage around the pouch where it adheres to your skin. If you see any seepage, change the bag as soon as possible because it will leak once that happens. I get away with changing my bag once a week, after a shower and completely dry. You gotta work quick and I use the palm of my hand to press down the ring, etc. for at least 60 seconds to secure that seal. Good luck, you got this. And oh yeah, after almost 15 years I still get rectal discharge. Mucosa is normal for us.