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How to deal with Anal Mucus?

Sun May 30, 2021 3:31 pm
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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 I my neurologist told me to ask my GI for a referral to an colorectal surgeon. After all the testing was finished, they agreed a loop ileostomy would be the best option for me. The surgery and recovery has 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 a one fleet enema every three days to clear out the mucus. At first this seemed to work. There was a small amount each time mucus after each enema. Then about five weeks out I started having to relieve my self 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 through 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 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. 

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Sun May 30, 2021 5:06 pm

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 advise 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 unexceptable to have to live that way.

puppyluv

 

Sun May 30, 2021 5:20 pm

Hi Memphis ...  been there and had that for a long time .  Having a Loop Ileo  can cause the problem . One section goes out as your Stoma , the other sde 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 Ileo 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 Ever 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 it's way into the wrong Tue !!  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 2nd  Opening in your Stoma . I used to get some real Gushers . I have a JPouch  but it is disconnected and the  second hole in the Stoma  would allow poopy stuff to get down into my JPouch . 

   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 goin 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 bady 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 you own trying to figure things out ...o happy MAO  is here for us all . Good Luck ☘🤠

Sun May 30, 2021 8:07 pm

Looks like magoo has given a good explaination. I can not 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.

Sun May 30, 2021 10:18 pm

 

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 

Mon May 31, 2021 7:33 am
magoo wrote:

 

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 


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 to purchase Absorbagel in the US, please anyone feel free to correct me!

Mon May 31, 2021 3:31 pm
memphisblues wrote:


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 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 .

Mon May 31, 2021 3:59 pm
magoo I wrote:


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 you're 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. 

Tue Jun 01, 2021 12:30 am
memphisblues wrote:


I am so sorry for your loss. 
I appreciate you're 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 . 

Tue Jun 01, 2021 8:20 am
magoo wrote:


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 . 


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 are 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 life savers.

Tue Jun 01, 2021 6:55 pm

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  !! 

Wed Jun 02, 2021 7:19 pm

Thank you!!

Fri Jun 04, 2021 12:28 pm

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 satchets 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!

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