Excessive Anal Mucus Discharge - Need Advice on Managing Ostomy

Hello,

I'm new to this site and I'm a new ostomate. I have a loop ileostomy and I'm one day away from being nine weeks post-surgery. I had to have this surgery because I have a neuromuscular autoimmune disorder. I was no longer able to have a bowel movement naturally even with the use of daily laxatives and enemas. After four years of going through that daily regimen, my neurologist told me to ask my GI for a referral to a colorectal surgeon. After all the testing was finished, they agreed a loop ileostomy would be the best option for me. The surgery and recovery have gone well. My only issue has been problems with anal mucus discharge. Because of the disease I have, I have no feeling and no muscle control in most of the anal and pelvic floor region. About two weeks post-op, the surgeon started me on a regimen of one Fleet enema every three days to clear out the mucus. At first, this seemed to work. There was a small amount of mucus after each enema. Then, about five weeks out, I started having to relieve myself of mucus (urgently and with accidents) about twelve times a day. Now, there was also quite a bit more mucus each time (around 4 oz/ 118 ml). At this point, I called my WOCN and she told me to stop the enemas until everything calmed down and told me how to care for the irritated perianal skin. She also said to start doing only 1 enema weekly. It took about a week and a half for everything to calm down. So once everything settled down, I did another Fleet enema. The same thing happened again, but this time I also had episodes of a lot of pressure and cramping sometimes with being able to get rid of mucus and other times with nothing happening. So I called the surgeon and explained the situation, he said to stop using the enemas completely and only when I was having episodes of cramping and the strong pressure feelings to use a Dulcolax suppository. That was about a week ago. For about five days, nothing happened. Then this morning, I had two episodes of what I would describe as massive uncontrollable diarrhea. I know it was mucus though. I had no warning, no feeling, no pressure, no cramping, etc. Both instances were major accidents and it was what I would consider an excessive amount. Just to give an idea, it completely soiled my clothes enough to throw them all over the floor, all the way to the bathroom, and I continued to go once I got to the toilet. I was wondering if this amount of mucus is normal, how to handle or avoid this type of situation from happening again, and if there is anything I need to be doing to alleviate this problem. Luckily, I was at home. But it's certainly going to cause me quite a bit of anxiety next time I'm out since this could happen again with no warning. Thank you in advance for your time and advice.

Hey Memphis,

I am so sorry you're having all these issues. I cannot relate because I have a colostomy and a Barbie Butt. There have been many discussions on here about having mucus output after surgery. Lots of good advice there. Yours does seem to be excessive. Others that can tell you their experience will chime in soon. I just wanted to say I certainly hope you find the cause and cure for it! That is unacceptable to have to live that way.

Puppyluv

Hi Memphis ... been there and had that for a long time. Having a Loop Ileostomy can cause the problem. One section goes out as your Stoma, the other side of the intestine goes to the Anus. Mucus is produced naturally for lots of reasons. Regular plumbing ejects it with your poop but in the absence of digested food, the body still produces the Mucus. I'm not sure if you've seen graphics of the loop Ileostomy configuration. In mine, I have two holes in the Stoma, one for waste, or as we Irish would say, "Shite!" The other will be headed for your Rectum and expelled. One key factor in helping is a powder called "Absorbagel". You put one or two into your bag every time you empty, every time!! When lying in bed if your bag is almost all liquid, mine looks like coffee, very liquid. This shitty liquid will make its way into the wrong tube!! It will be sucked into the side that goes to your Rectum. So instead of just a little Mucus, you get extra shitty liquid from the second opening in your Stoma. I used to get some real Gushers. I have a J-Pouch, but it is disconnected and the second hole in the Stoma would allow poopy stuff to get down into my J-Pouch.

My first and best weapon was "Absorbagel". Instead of the contents of the bag looking like very odiferous (don't get to use that word too often) stinky coffee, the Gel Packs in the bag turn the liquid into a paste-like consistency and this prevents it going down the wrong tube. You could possibly have a bacterial infection and you could ask your Doc about Flagyl, it just might help. Remember that you are a newbie to all this crap so your body will take quite a while to adjust to this new configuration. This site is such a great resource for us all. When I first got mine, you were pretty much on your own trying to figure things out ... so happy MAO is here for us all. Good luck

Looks like Magoo has given a good explanation. I cannot add anything just to say I hope you find some answers soon. Please keep us informed as it might help some others. Best wishes and stay safe.

Hi Memphis, if you look at my photos you will see that I have uploaded a couple of graphics showing the Loop Ileo and the two openings. For a long time, I never thought about the second opening and how it causes discharge problems. What goes to my rectum,

to my J Pouch is a part of my small intestine. Using Absorbagel to thicken my output stops the liquid going down towards the rectum. When you lie flat in bed, the liquid can easily get into the wrong tube.

I never thought about the second opening until a friend on MAO pointed it out to me. I actually told my doctors and surgeons about this problem and how Absorbagel helped, they also never thought about this situation

and what was causing the discharge. It will take a year or more for things to settle down for you, but using the gel packs will make it happen quicker.

I hope it gets better for you, I know how badly your sleep can be affected, hang in there my friend

Magoo wishing you all the best

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Thank you for your help! I am definitely going to ask my WOCN and doctor about the Absorbagel. You've given me more info in two replies than I've been able to find or get from healthcare professionals in weeks. Thanks again.

I looked up Absorbagel online and the Opus Health site said it could only be purchased in the UK. So my question is, will all the gelling products work for this specific issue? From a quick overview, it looks like the main gelling products here are diamonds, pearls, and one other I can't remember at this time. Also, if I'm wrong about not being able to purchase Absorbagel in the US, please anyone feel free to correct me!

Hi again, I am so happy that I could at least point you in the right direction. I know how horrible it can be at first, but it does and will get better. Hang in there and I hope I helped a little.  I got my Absorbagel in Ireland, but I thought it would be available here by now. I guess not. The love of my life, Kitty, who we lost last Oct to a blood clot, got her supplies (she had an Ileostomy also) through Kaiser in Calif, and I think it was "Pearls" she used. I tried them and they were almost as good. They come in a slightly bigger package (like a fat sugar pack)  . I tried two in my bag every time I emptied, and they worked quite well. If you have to pay for them, they are quite expensive, but they will make a huge difference to your quality of life and your freedom to go out in public (not sure about yours, but the mucus-type stuff I used to get smelled so damn bad, like the worst pig shite ever!!!  lol...not so funny in a restaurant!!!) The most important time to use the gel is when you are lying down. I think they use the same stuff in underwear for people with weak bladder problems.  

Best of luck, my friend, and I'm always around if I can contribute.

Magoo.

I am so sorry for your loss.
I appreciate your help so much. I will definitely speak to my WOCN tomorrow. Today is a national holiday so she wasn't in when I called. I'll ask her about the Absorbagel and if they do have it, I'll definitely try to get it. If they don't, I'll try for the Pearls. Thank you once again so much for your help. It's a relief knowing I've finally found a group that can help me. Yeah, I'll definitely be getting these even if insurance won't cover it. The smell is astonishingly awful. I don't know what I'd do if that happened to me in public.

One last thing, Memphis. Micropore Surgical Tape by 3M is one of my dearest friends, lol!!! Only the one made by 3M, it's the best!! If you swim in a pool or the ocean, a 2-inch roll of Micropore will be a lifesaver. I use it all around the perimeter of the flange, four strips of the 2-inch. Cheap on Amazon. It will not come off until you take it off, amazing stuff. Leaks will happen but the tape will save your life in public. I was in the security line at SF Airport when the closure on the bottom of the bag failed!!! The entire contents poured out the leg of my pants!!! This is why I always carry a full set of clothes in my backpack, just in case.

All the best, Eamon. nbsp

Will definitely pick up some of the tape. I am already carrying a full change of clothes and emergency kit because I know leaks in public are bound to happen. I'm so glad everyone who has dealt with these issues for years is willing to share their experiences. It at least gives us who are new to this an idea of what to expect and what to do when various things happen. I hope one day when I get the hang of all of this I can help others just like everyone here. Thank you!! You are lifesavers.

Hi again, I also use the "Eakin Cohesive Seal" under the wafer. It will cut your bag changes in half. Like a round 4-inch washer that goes over the stoma. The hole in the middle is malleable so you can shape it for your stoma shape... Great stuff!!

Thank you!!

Hi everyone,

I just wanted to give everyone an update on what's going on. I spoke with the WOCN and she didn't know where or how you could purchase Absorbagel in the US, but she did recommend Diamonds sold by Ostomy Secrets which are also gelling sachets and they seemed to have really good reviews so I ordered some (of course they aren't covered by insurance). In the meantime, she told me that taking Metamucil would cause the output to come out in gel form. I've been doing this for two days now and have had no incidents! It really seems to work well. However, I'm now having periods of hard pressure and contraction-like feelings in my lower abdominals, pelvic area, and anal area. Because of my neuromuscular disease, I have no voluntary control in this area. I didn't before the surgery and I don't now. After I would have episodes of the extremely large amounts of anal mucus discharge, these hard pressure and contraction feelings would happen. I figured it was all part of the same problem, but apparently not. So I have a message in for the doctor. Because I'm having about 3-4 of these episodes a day and they last around two hours each. The feelings start out mild and then progress to pretty severe discomfort and a constant urgency to have a bowel movement. It will start with regular, clear, non-smelly mucus coming out then some sandy light brown stuff (that I'm assuming is a little bit of hardened mucus), then nothing will come out at all, but the spasming feelings continue for quite a while. I have to stay very close to a bathroom because every now and then what looks like water will come out, soiling my clothes. So needless to say, I haven't been able to leave the house at all this week. The spasming is so hard it feels like my entire torso area is sore. Hopefully, I'll hear back from the doctor soon. But on the positive side, one problem seems to be solved! Onto the next! Any thoughts or past dealings with this would be helpful and appreciated. Thanks!