Need advice on hard mucus build-up with loop ileostomy

I have a loop ileostomy and had the surgery due to dysmotility of the gut and pseudo obstruction (no longer had any peristaltic wave to move things along). This happened after two lots of major surgery on my spine done through my abdomen. I had the surgery done one year ago this month. The problem I now have is that I have a buildup of mucus in my back passage fairly high up and can't get it out. When I lay down, I can feel it and it feels like I need a bowel movement and is quite uncomfortable. But when I sit on the lavatory, the feeling completely goes and I'm unable to push as I have no feeling. I have put surgical gloves on and tried to manually remove it myself, only able to get a small ball as it's too high up.

Desperate for any helpful advice.

Hello Kateinbed.

Sorry to hear that you are having these sorts of problems.

You do not say when you had your surgery and this might be relevant because mucus buildup in the anal stump is quite common soon after this type of surgery.

I had some painful, disgusting and seemingly irresolvable problems like this for about a year after surgeryand having tried all sorts of things to resolve the issue, such as digital extraction, suppositories, anal irrigation with the cone, nothing seemed to be working. Eventually, I made a gadget( or rather two gadgets becasue one did not do the job properly).

These were made from anal catheters that I had been using prior to the operation; I adapted them so that they fitted onto the shower in the bath, which gave me enough pressure to force the mucus from the end and sides of the anl stump without causing damage to the tissue. The technique which worked best was to first use the catheter with the end cut off ( and shaped) so that the water shot straight out of the end and cleaned the top end of the stump; I then changed the catheter for the original design which shoots the water out of the sides. Pushing the catheter up the stump and gradually pulling it back out with a twisting round and round movement, dislodged the mucus from the side walls of the anus and forced it out.

Disgusting as it may seem, it gave me great satisfaction to see all that gunge floating down the bath, knowing that it was no longer inside me! It also educated me into seeing what was causing my pain. After about 6-9 months, the mucus started to become clear, runny and odourless , rather than the disgusting, smelly, semi-solid, multi-colours it had been before.  Once it had settled down to the clear output I slowed down and then stopped the irrigation and just used incontinence pads to catch the output and I am still doing that today.

I will pass on the very appropriate warning that the nurses conveyed to me when I wanted to try this method for the first time: There are very real dangers in poking catheters up your anus where you can easily puncture the lining of the colon and then you are in real trouble. This danger is greater because there are few nerve cells in that region to let you know when you are causing pain. In my case, the surgeon was not prepared to say how much anal stump there was left, so I was guessing as to where the end of it was. This was why I used the water pressure to do the work, so that it was less likely to puncture the tissue.

I do empathise with you plight in dealing with this matter and I am convinced that the medical profession ought to be giving you appropriate advice and practical help to resolve it.

The method I used has its dangers and I would not recommend it to anyone else as a DIY process. However, If you could find a medic that would do the irrigation for you or at least help you for the first few times,  I would be glad to pass on the design of the apparatus that might be able to assist them in their endeavours.

Best wishes

Bill       

Hi Kate,

I just tried to respond to your question but I must have hit a key or something wrong because it's missing! Some unsuspecting person out in cyberspace is probably going to receive a message wondering what in the heck I'm talking about :)

I think I had a similar question last month so I'm just pasting it below to see if we're on the same page... if so, I'd really like to chat with you about it because I'm still having issues and I have passed the mucus plugs. Oh... and what does CFS/ME mean?

HERE WAS MY QUESTION (I got no response):

I had surgery February 2nd at which time a loop ileostomy was done bypassing the large intestine. For several weeks I've felt like I need to have a [normal] bowel movement and lots of pain cramping. I have talked to my surgeon and had a simple x-ray. It seems I'm having symptoms of Diversion Colitis. She has prescribed Dicyclomine (Bentyl) but I think the cramps are worse. She also mentioned Short Chain Fatty Acid enemas. They are not covered by insurance because they have to be formulated at a local pharmacy. I don't know what to expect or how they work and would like to know if anyone has advice or personal experience.
Thanks for your time,
Vicki

Hi Bill, Thank you for your reply. I actually ended up in the hospital on Monday as I went to see my GP in the morning and they sent me into the hospital. I have motility problems with the whole gut and so I get pseudo obstruction and slow output sometimes as well, but wasn't expecting, since having the ileostomy 12 months ago and I wasn't passing any mucus at all, that it just was building up inside. I did mention once to the surgeon that I had read people pass mucus but I didn't, and he just said everyone is different!! Now I know I was producing it all along but my large bowel, which is still in place, does not release it down to the rectum. I had enemas done over two days with an anesthetic gel as the pain was horrendous and sooooo much congealed stuff with blood came out. I couldn't believe that was inside of me and even the nurses I had hadn't seen that before - so I now have to wait to see my surgeon, he is on leave and I have to wait six weeks now but am terrified of that happening again.

I don't think I could do what you do as I am not brave enough to risk that and also have the whole large bowel in place would have too much to clear.

I wish you well and make sure you take care!!!

Best wishes, Katherine

Hello Katherine.

Thanks for the update and I'm pleased for you that they have cleared it for now, although the proceedure doesn't sound very pleasant.  I can just imagine how much hardened mucus would have been there if I had not found a solution to the problem at an early stage. Asi t was there was copious amounts of the stuff coming out on a daily basis.

It will be interesting to find out if the medics come up with a more satisfactory permanent solution for you. From what I was offered, it seemed as if the only thing they had by way of a suggestion was to have the lower bowel removed altogether and seal up the anus. The surgeon explained that the proceedure was much more involved than when I had a stoma and they have to open us up properly. I declined the offer and felt that I would persevere with the problems as they were, until such time as they became unbearable. As it happened, the situation improved the more I irrigated so I've been relatively free of anal mucus for some time and I stopped anal irrigation a few years back.

Anyway,  I hope your situation resolves itself or gets resolved soon.

Best wishes

Bill 

Living with Your Ostomy | Hollister

Kateinbed: I had an ileostomy in Nov 2016 due to slow mobility but still have my large colon attached. I do have some mucus discharge after doing about three enemas during my shower. I think I may have the same problem as you and not getting it all out as I'm very uncomfortable in the stomach area and it seems it's worse than 2 months ago. I've been to my GI doctor and she thinks it's my psoas muscle that is too tight. Really? Now I have another issue? She sent me to a therapist to learn how to stretch this muscle and also I found some exercises I'm doing online. I'm still in pain. I have an appointment with her in Feb. My question for you is what did your GI doctor suggest to do about the mucus buildup? Remove your large colon??

Hope you found relief.

Sis1949

Hi Kateinbed and Sis1919,

You two are the first I've found that really understands what is happening. I was told a long time ago, on another site, that leaving the large intestine/bowel is nothing but trouble. I see you both have other issues as well which play a part in not being able to pass this mucus. I am never without the pressure and discomfort but I have tried to accept it as a part of the initial pelvic floor problems. I told my surgeon about it (noted: I was very careful not to seem like I was telling her how to do her job) but she said it's nonsense and we, under no uncertain terms, I was informed we would NOT be removing the large intestine. She also reiterated the fact that the ileostomy may not help with the pelvic floor!! She DID, however, prescribe cortisone enemas.

I am almost to my 1-year anniversary of the surgery and still can't get the skin around my stoma healed. I know it's largely because the active side of the "loop" ileostomy gets pushed below the surface by the inactive side. It's another issue I've tried to discuss only to be told she will not revise it. She even told me some people never get the skin totally healed... do you think that's the truth?

I can't tell you how relieved I feel to finally run across a couple of people who really understand me. I'm all ears if you have any advice or suggestions.

Patience has not been my strong suit, I will admit. I'm getting pretty frustrated though.

Looking forward to your thoughts, Vicki

I've had a problem having a bowel movement for around 20 years. I've been to the Mayo Clinic, which they said I had pelvic floor dysfunction and sent me to two weeks of retraining my pelvic floor. It didn't work. I used Maralix for years. Then that didn't work very well, so I started using it with Exlax.

Saw GI doctors after GI doctors. The last one had me take Liness, which worked okay but I still have stomach issues (uncomfortable), so she then said there wasn't much more she can give me. So I asked her to refer me to a surgeon, which she did.

I had taken a mobility test where you swallow "markers". About 27 of them. Then you go in and get an x-ray every few days to see where they are. After a week, I still have 21 of them scattered throughout my colon, which proved my colon was not moving correctly.

So I had an ileostomy, which I can live with. But why the pain? As I said, my GI doctor thinks my psoas muscle is too tight. I'm doing exercises for it every day to see if this helps. I would like my large colon removed. I know I won't reverse my ileostomy, so why keep it if it could be causing me pain.

I'll let you know what my doctor says after I see her in Feb.

I had an emergency ileostomy op four years ago and was left with a huge hole in my stomach that took twelve months to heal with a vac machine, leaving me with no navel. I have done quite well up until now. Then I found a pong that did not come from my bag, soon I found it was from my rectum and hard waste had set up there that will not move at any cost. It is a worry and concerns me so much.