Hello

Hi Alexdors Yes it’s completely normal to pass these little plugs of mucus. Have you tried sitting on the toilet and gently bearing down as if you were passing a normal motion?

You could also try posting on the stoma board?

community.macmillan.org.uk/.../ileostomy-and-colostomy-discussions-forum

Thank you,I will have a look at the stoma board, I have done what you said but there is something permanently there, find it hard sitting and walking around its very uncomfortable the hospital say it’s normal to have this feeling after a stoma operation, as I still have the tumour there.

Hi Alexdors,

The feeling you have is called tenesmus & it’s horrible.

I had it after my lower anterior resection with loop ileostomy and it can be caused by a number of things; mucus build-up, inflammation, diversion colitis, phantom rectal sensation, to name a few. It’s uncomfortable to walk, lie down or sit and it did take over my life for a while as it was all I could think about.

I found sitting in a warm bath helped a bit but sitting on a hot water bottle helped much more, I also got a doughnut cushion to sit on. Mine literally went from one minute to the next after just over 6 weeks. I’m not sure how long ago you had your stoma op but I really hope this horrible feeling you have will pass soon.  Let me know how you get on.

Best wishes,

Net77

Thank you for your reply, I had my stomach fitted end of June, this feeling is awful,I will try hot water bottle as not got a bath, being disabled I have a wet room. I thought after getting stoma bag thing would be easier, which they are on that part, no more mess and showering 4,5,6 times a day, I am losing a lot of the mucus since my stoma, palliative care thought morphine tablets might help but it’s not so much pain as the baring down feeling something there, has yours has gone now, I’ve spent so much time in bed since having cancer, it’s been over a year since my diagnosis, but one think after another has happened gets very frustrating, still waiting to see if I will get the big operation in a specialist hospital as tumour has got bigger again thank you for your message hope you are ok too

Hello again Alexdors,

I’m sorry you’re having such a hard time of it at the moment. I think many of us feel you just get over one thing and another comes along to try us!

I’m pleased having a stoma fitted has made that part of your life easier I’m sure it’s taken some of the stress away regarding accidents and it must have been exhausting having to shower so often. You’re doing very well and remember to remind yourself how far you’ve come.

It's still relatively early days since your stoma operation, only 3-weeks or so. As I mentioned above it was just over 6 weeks after my op that my tenesmus stopped. I remember it well as it was such a relief and I was so excited I was messaging all my friends.  I guess it takes our bodies a while to adjust after being operated on and I’m sure there will be some internal inflammation which will hopefully settle as your body mends itself.

If the hot water bottle helps you might want to consider getting a (microwaveable) heat wrap as it’s more malleable than a hot water bottle and therefore easier to use especially at night on your bottom. But do be careful and don’t over-heat or burn the area.

I hope you get your ‘big operation’ once you’re over this hiccup.

I’m doing well thank you. I’ve just passed my 5 year mark and been signed off surveillance, so a celebration is in the offing!

Best Wishes,

Net77 X

Thank you so much for you support, I have a wheaty bag my husband has warmed it in microwave, I spoke to palliative care today the duty nurse is going to prescribe pregablin start at low dose it’s a blocker, thinks it will help, I said I needed something as have plans to travel to see my niece, not been able too do that, if I haven’t got much time I need to do it soon, I was taken into hospital very poorly that’s when they decided to do the stoma while I was in,but didn’t know if I was well enough to survive as I had to have a filter put in due to a recent blood clot, after my operation I was put in a side ward,I got an infection then was in a lot of pain I got a tare in my stoma, which they thought was to do with the operation, treated it with antibiotics the doctor was worried about me having to go back for operation to repair it, she didn’t think I would pull through, I have lost so much weight, they given me drinks to have to build me up, everything worked out well thankfully. Long stay in hospital 4 weeks next step is the big operation and wether I am fit enough, my appetite is better but eat very small. I just hope I can get this feeling gone so I can make my trip away. I’m so gad you are doing well,always want to hear that with cancer, keep getting better and stronger god bless you I will keep you in my prayers and thank you again for replying to my message,I Wii let you know how things go. Doreen 

Kareno62 has echoed my own experience with this sensation. Although my rectum was resected and not re-joined (I have two stomas) mucus was passed in small quantities and the feeling was strange, perhaps worrying, but I used the lavatory as 'normal' when the urge arose and placed a pad of toilet tissue in the strategic place when dressing - just in case of a leak when out and about. That worked fine and in spite of this urge to 'go' the quantity was small indeed. Eventually it stopped after a number of weeks (this was four years ago) and hasn't happened since. The hospital told me that this was a natural occurrence because our digestive system is one long mucus membrane (together with our eyes, nose and throat) to lubricate the passage of food, etc., etc. 

The things we never knew!

Best

Dulac

Thank you for your message, we are never told about what to expect but I can see what you say about the sensation,I'm finding it difficult, but feel reassured that it's not there for good, just hope it goes away soon,as got family I want to visit as not sure how long I got if I don't get the big operation my stoma was fitted 4 weeks Friday I was told things should settle after the six weeks so that would great. I do get a lot of the mucus but put that down to still having the tumour, I will see how things go, thank you again for your message makes me feel better about things take care 

Hi just to let you know palliative care nurse has put me on pregablin accord started at 25mg now increased it to 50 mg I’ve had the stomach 5 weeks Friday but no improvement as yet hope you are getting on ok and had or having your celebration best wishes Doreen