Mucus sucks. I had issues on and off with the mucus for a couple of years before I built up some courage, had the J pouch removed, and the Barbie butt formed in 2019. My experience with the Barbie butt has been amazing. My rectal region has always been an on and off source of problems for me since my J pouch was formed in 1992. Once I developed fistulas in 2015, it became unbearable. That is when I had a loop ileostomy formed to bypass my J pouch. Some weeks would be fine with no mucus so I thought I was in the clear. Next thing I know, I am out somewhere and my pants would be soaked with mucus. I started wearing pads all the time. I think the mucus has a mind of its own...darn intestines doing their job Producing mucus that I didn’t need any more. Uggghhh. 
Do you still have your J pouch in or did they remove it and not close things up? I hope you can find someone to give you an insight on how to tackle the mucus issue. 
My surgeon decided to keep my ileostomy a loop because the stoma really is perfection EXCEPT now I have problems with the little bit of intestine I have left that once connected to my J pouch. I have a lot of mucus drainage from that tiny portion of my intestine which comes out the stoma hole flush to my belly.  I don’t know if I will ever be free of mucus from my life. I have a doctor appointment in September so we will see if there is any hope! So frustrating. 

Best of luck finding a solution!!!

Thanks Lori. My surgeon just disconnected my small bowel from the pouch and brought out the top part for the Ostomy, so it’s an end Ostomy not a loop. The stoma is perfect  and I feel so much better without the pouch and all the abdominal and rectal problems.  It’s just the volume of mucous that’s the problem.  As you said...”Darn intestines” doing their job. I don’t want more surgery, just thought maybe there’s a medicine or something that would help. Thanks again!

I too had a diversion, with an end ileostomy in '17 (my history is very much like Lori's, I had fistulas, and abscesses).  For a year after diversion, I endured the mucous drainage, which was so very unpredictable and intense and embarassing at times.  My surgeon let me try Keflex (antibiotic), which seemed to work a bit, but not really enough to make it worth being on antibiotics long term.  So, I put up with the drainage, knowing the plan was that my pouch was coming out a yr after the diversion, and everything  would be closed up (Barbie butt).  The surgeon really had no other suggestions/advice re. the mucous (for what it's worth, I was going to the Cleveland Clinic).  

The pouch removal/BB surgery itself was a success - I was stitched on the inside of my butt, so recovery was a bit easier there.  My stoma was revised due to (uknown to me) kinking.  I had some complications (afib, low bp, an ileus), and had to return to the hospital for 10 days or so, but it was all worth it.  

I wish there were more advice I could give you re. the mucous.  Good luck with everything.

Thanks for the reply.  Still worried about undergoing the pouch-removal surgery and the recovery.   I am a healthy 65 year-old woman with a good quality of life, other than having to wear pads all the time.   I may meet with my surgeon, who was wonderful, and just get her input.

 Take care!

I've also been having problems with mucus and my jpouch (i also have a loop ileostomy). I'm going to try irrigation soon which was suggested to me by an internal pouch nurse under my hospital. but I think for you, speaking to your surgeon might be the best bet for you if you havent done so already, they might not want to operate as you're otherwise healthy but who knows. 

Mucos is the bane of my life at the moment so im really feeling for you and hope you get some help with it. X

I too have constant mucus /water. All day every day. Some days worse than others. I hope the irrigation Works for you. It didn’t work for me - it was  what the surgeon suggested for me and  not help.
Loop and jpouch. 

Unfortunately the only way to end the mucus is to have the abandoned J pouch removed. I had what you have and it was great at first but the excretions from the abandoned J got worse and worse. On top of that I had a poor stoma due to pressure from the the J pouch. I had the J pouch removed, the stoma reworked but did not get Barbie Butt . The anal canal was left intact. I get a tiny amount of mucus and they do a quick scope every 2 years (I had CRC after 25 years of UC). Its been 8 or 9 years since my last surgery. Everything is working well.

Thanks for this information.   No one seems to know why I am having issues with this constant drainage. It of course seems to be my internal sphincter as the external ones are good and strong.

Looks like  I am headed in that direction of getting an end from this loop - but if I could do an end and remove pouch without the BB, that would be ideal.  

It’s difficult as I have seen surgeon number 3 today and said if I have the jpouch removed have to get the Barbie butt?  But if I understand you u didn’t get the Barbie butt when they took the jpouch out ?

Yes I had pouch removed and did not get Barbie Butt. Most people do very well with BB, some don't but it does make for a bigger surgery which I didnt want. My surgeon didn't have any problem with not doing it. Now if you have Crohns they may want the anal canal removed.  I haven't posted for a long time but there was at least one other poster here who had the same basic surgery I had.

Thank you for reply

No I don’t have chohns it was UC that I was dealing with.  I really don’t want the BB so I hope to avoid. I so wish I never had this jpouch surgery and then right after surgery to have this constant drainage and the loop  which is a challenge.    I know the loop was to have been temporary but it now seems with my internal sphincter was not working almost day one after the surgery has been trying and confusing. The surgeon who did the actual construction of the jpouch said directly to me. You will probably be incontinent but I don’t know why u wouldn’t try ....to the next surgeon I got for a second opinion said that it would be a disaster to connect it, and I am so grateful to have gotten his opinion.  

This site and the people who take the time to reply have been so great and help me keep me on track to keep going for the right solution and to ask the questions. Thank u again

Just to clarify: I had a fully connected J Pouch for about18 months,  2 step surgery. It was pretty much a disaster. I had incontinence from day one. I believe I was damaged in the original surgery which was very difficult. After getting to the point where my life really sucked I first went to an end ileo with the J pouch left in place.  Beautiful... then after a month or so the excretions from the pouch began and got worse, they were not controllable, they didn't burn like the incontinence which was good but still a real mess. They say the excretions are caused by the pouch being in effect starved, because it is out of the excrement stream and just sitting there doing nothing but they really don't know. Most people that go this route have problems but oddly some don't. So after about 6 months of this I had the pouch removed  which is a tricky operation and you need a surgeon experienced in removals to do it, and as was said no BB. My anal canal is intact and there is a tiny bit of the old pouch connection which had a mucosectomy when I got the pouch. After that its been roses, roses... well  maybe not quite but my life is not restricted by having the end ileo.  Tiny amount of mild smelling mucus which I remove in a shower once a day. That's it. Well I do have a bag which I change twice a week and empty maybe 5 times a day. Of course if I had it to do again I would say no to the J.  and go with the ileo. But it was what it was.

Thanks guys, for all the info and commiserating which is helpful.  One thing we agree upon is that the ileostomy is “livable” and better than having UC with the symptoms and high chance for colon cancer after having it for years.  I can live with the pads and should probably buy stock in Poise or “Always.”  Happy Holidays!

Jamie

Thanks for the reply.  Still worried about undergoing the pouch-removal surgery and the recovery.   I am a healthy 65 year-old woman with a good quality of life, other than having to wear pads all the time.   I may meet with my surgeon, who was wonderful, and just get her input.

Sounds like a perfect plan!!!

I think the drainage will stop if the pouch is removed but if you can live with how things are now, I think that is good too! A lot of people leave the J-pouch alone and just live life with the ostomy. I think whatever you chose is great

By the way, I think if you clean out your J-pouch with enemas maybe around once a week, that will stop the drainage. My dad has an ostomy and his colon/rectum are still there, we clean him out with enemas every 4-6 days and he never has drainage. Try cleaning out your J-pouch every 4-6 days with enemas and see if that clears up the problem, I am confident it will

Thanks Lauren. Just a weird question, is a Fleet enema enough, or do I need some other type of enema “apparatus?”

@JamieS posted:

Thanks Lauren. Just a weird question, is a Fleet enema enough, or do I need some other type of enema “apparatus?”

You are very welcome! Fleet enema is more than enough actually, that should definitely solve the problem.

@Former Member posted:

You are very welcome! Fleet enema is more than enough actually, that should definitely solve the problem.

@JamieS posted:

Thanks Lauren. Just a weird question, is a Fleet enema enough, or do I need some other type of enema “apparatus?”

By the way , no question is weird

After a diverting end ileostomy my j-pouch didn't get better so had my j-pouch removed and ended up with a barbie butt. It took months before I could sit without a cushion. That was not a big deal as I felt so much better.

That said I had these surgeries at the Maho clinic where I had been treated by a GI for 3 years. According to the medical experts it was the most complicated surgery I've ever had.

I am new to this group (which I cam across it sooner), so I apologize for a delayed response, but has anyone else had success with enemas reducing drainage like Lauren had mentioned for her dad? I have had a Jpouch now for 2 years with 2 unsuccessful reversals. I now have an end illeostomy again, but dealing with bad mucus drainage as well. I also was wondering if anyone has noticed if their mucus was increased if they had a sinus infection or cold? I currently have one and this is the worst my mucus has ever been. Wondering if potentially related? I know the pouch has no rhyme or reason as to when it produces more or less mucus, but figured maybe it was producing more now like my nose to rid the body of the mucus? Any feedback would be greatly appreciated!

Paige,

In my situation, the increase mucous drainage  seemed to be related to increased inflammation of the pouch. When they did a pouchoscopy, my GI said the pouch looked pretty bad with ulcers and poor-appearing tissue. Since my quality of life was deteriorating due to the constant drainage, and the fact that the pouch itself was in bad shape, my GI and colorectal surgeon recommended removing it and closing off the anus, or Barbie butt surgery. (Actually called an abdominal perineal resection.

  I had the surgery in August and I have never felt BETTER.  It is wonderful to not have to worry  about changing pads every 1-2 hours and being able to do any athletic activity that I love such as hiking and biking.  Yes, it is a major operation but I recovered quickly and am so happy with my decision to remove that troublesome pouch!

I was never able to find a solution to the mucous drainage issue other than that.

Take care…   Jamie

Thank you so much Jamie! I am so glad to hear you are doing well

I had my pouch removed.

Anal canal still intact. No bb butt.

But I do get mucus in the anal canal.  Which was sewn from the inside shut.

It's normal. I'm not going to have it removed.

I'll deal with it.

Too bad they don't make a tiny tampon type thing to soak it up. Mine does not go any further and onto my underwear. But it's annoying.

Richard.

Reading Jamie was so good for me. My 20 years old pouch has a squamous cells cancer which is very rare and very unfortunate! It has been disconnected 1 month ago and just starting to have a lot of leaking mucous, I felt pretty good for this first month and started sleeping without protection pants or bed mats for the first time in the last few years and now back the it, pity.  My question is how difficult is the recovery from the excision of the jpouch?,
unfortunatly I have to do this big operation because of the cancer and it will be probably in February after having had chemio and radio therapy. Any reply is welcome! I really hope to get over this difficult few months  for my sweet grandchildren and to be able to play a bit of golf still, which I enjoy so much!

Happy New Year to  all

Patrizia

Patrizia,

Since the surgery to remove the pouch in August, I feel better than ever and I’m so glad I did it.  My recovery was easier than I had anticipated. I was in the hospital for 3 days, and had the usual post-op pain for about a week, easily managed with medication. The main recovery issue is that you can’t SIT for 2 weeks so you have to either eat standing, or in a reclining position. I also had stitches between the buttocks for 2 weeks which itched and poked a little, but not to bad.. My strength came back after a week, and I would say by 3 weeks I felt totally normal.

Since you probably already have the ileostomy when the pouch was disconnected, you won’t have that to adjust to, and not having to worry about drainage at all  is fantastic. I have stopped wearing pads altogether which has been great.

I am 66 so don’t worry that you are older. If you are in basically good shape , you will do well and definitely will be playing golf before you know it. I love to hike and it’s great to be able to stay away from a bathroom with no worries!

I hope your treatment goes well, sorry you have to go through that first. Please feel free to private message me if you have other questions.

Take care, and Happy New Year!

  Jamie

Have any of you had mucus or something also draining from your vaginal area as well as the anus?

Paige,

This sounds like it could be a fistula tract between the pouch and the vagina. I would definitely contact your GI surgeon if this is happening.

Jamie