We are Macmillan. Cancer Support
I wonder if anyone who has has an ileostomy and loop stoma also experiences pain and discharge from the anus? My operation was eighteen months ago, aprox, but the colon has not healed yet, so a reversal is not possible yet. Although the colon (large intestine) is not functioning I get a reddish fluid escaping from the anus and this burns inside until it is released. I've no idea what this is, why it hurts, and how I can ease the pain it causes.
Another question I have regards the stoma, which is working properly. As well as the top opening that excretes the waste into a pouch, it has a second hole at its base where it meets the skin. The problem is I cannot see this second hole when I change the pouch as it is below me and hidden from sight. I don't know why there is the extra hole or if it has some function, but if I perchance cover it with the pouch then it leaks under the seal. I don't understand why or how it is able to leak the waste that should come out of the top hole.
I'm perplexed. Can anyone help me understand these two happenings?
Hi Royston, well I am a bit familiar withsome of your problems. I had an ileostomy (now reversed) and my husband also had one (now changed to a colostomy as it could not be reversed, and colostomies are easier to live with) but my husband has always had a rectal discharge. He had it heavily after his operation for 2 years, then it stopped for a year (nobody knows why, it just 'happens' according t the surgeon) - and then it started again, and he still hasit. It is not a reddish fluid though.
Have you asked the surgeon for his opinion,? I am sure he will know - I believe this is quite common. Regarding the extra hole, I am not exactly sure what you mean. There should not be an extra hole as far as I am aware. Please contact your stoma nurse, and/or surgeon to ask about these two things. Do post again on this link and keep me informed......best wishes -
Thank's for your reply. It's at least some reassurance that your husband has had similar effects to mine.
I did ask the surgeon both these questions and he said the discharge was probably wind (??) or naturally produced fluid, but he couldn't give a definite answer. It seemed a bit of a mystery to him. My nurse said there is still a passage through from my stomach so some matter is not surprising. Neither reply was very satisfying. The burning pain was unexplained.
The stoma holes were investigated by junior doctors who were bewildered and contacted my surgeon who said not to worry about it. I've searched Google but can't find any reference to it. It wouldn't worry me if it didn't leak and get under my pouch. I can't even reason it out for myself.
If I do find out anything i'll post it. I'll keep watching this thread too.
It's not wind! It is a naturally produced fluid which is indeed very common. I know this because we went to see a well-known professor of colorectal surgery who has written many books etc , after not getting satisfactory answers previously. BUT if it is reddish, that surely indicates some bleeding somewhere...we had all that investigated over and over again before we got the answers fromthe Prof. !!
The pain I can't explain as my husband never had too much of that, just a bit. As for junior doctors well I would forget that....this is a very specialised area of medicine and only the top guys will do! (sorry to sound a bit weird,but for us it's true). There are surgeons, and then there are surgeons.
I am a bit concerned about the stoma hole (second one) as I have not heard about that before but I do know that your surgeon MUST know and should explain it to you. You don't say where you live, are you in London by any chance? Because if you are I can direct you to the very best surgeon probably in the UK, and even more likely, one of the best in the world, for a consultation. If not, why not just get a second opinion from the head of colorectal surgery at either your own hospital, or another one> Plus, what does the stoma nurse say about it?. Tamara
I had a colostomy for four yrs...the discharge is normal and usually clear, it what your bowel does naturally...but you never realised before because you had bowel movements. This occurs naturally 35-40 day cycle, and the rectal spasums are to help sercrete the mucus. Your stoma nurse should have all the info and there are social meetings at most hospital where you can try different products as well...stoma nusre should have all this info.
As for the stoma you should only have one exit for the feaces to pass!!! but sometimes it can look like there are two holes...this is or could be what is happening to yours, the part of your bowel that is on the outside which you place in the pouch, can sometimes fold and crease so it looks like two exits?!! have you ever watch when you have a motion? take your pouch off hold tissue below and it could help you to see if there is one or two exit for sure.
If your still having problems keep going back and get this checked...as having the stoma should not interfer with your normal every day life!!! its surpose to make life worth living...hope i have been some help, if you need me to explain further, let me know
take care Helen
Yes, it sounds very similar, but my discharge is and always has been a reddish colour, more like rust than blood. I have told the surgeons about this but they give no explanation for it. It is frequent, about six times a day or more, and the burning is really depressing me. It's worse as I wake up when the whole pelvis feels on fire. I don't often see the surgeon, only one of his team, and they can't explain it. I think the burning pain is related to the fluid because there is some relief after it has passed. Fortunately I am able to hold it for a while giving me time to reach a toilet.
The second stoma hole is definitely a seperate exit like the top hole, but it does not excrete as much waste. The medics have seen it and the surgeon says not to worry about it. It does make changing the pouch difficult though.
I shall be seeing the oncologist this month and the surgeon's team in february. I shall be more insistent in asking about these two problems.
These replies do make me feel that mine may be just variations of what we have in common and are not unique.
Hi Royston, don't know if this is any help, but my partner had his illeostomy carried out in October. He has only had one episode of bloody rectal discharge so far, but the surgeon warned him to expect this and there was no pain.
He has the second stoma that you've described but on the opposite side from the illeostomy stoma. The surgeon explained that they are normally on the same side but his had to be some distance apart because of the large amount of bowel removed. I've done a bit of internet searching and it would appear that it's not uncommon, where the illeostomy or colostomy is to be reversed, for both ends of the resected bowel to be on the surface. Try googling "loop illeostomy". The active, upper part of the bowel produces the normal faecal matter while the lower part produces mainly clear mucus. My partmer's second stoma is only covered with a small dry dressing which we change every couple of days. Certainly we've found that junior doctors - and even some senior ones - from other than colo-rectal disciplines seem pretty ignorant about the whole thing. I would also say that you need to be really assertive about asking the things you need to know. Medical staff (of all types) can be pretty patronising and insensitive at times (and yes, I know, not all of them) and I've found I have to be pretty up front, stubborn and at times confrontational to get what we want/need. Really hard to do when you need all your energy just to fight the illness so maybe you have a friend/relative who is able to support you to be be assertive and insistent about getting the info you want and have a right to. Best of luck!
It does help to hear of other people experiencing the same or similar things. I shall certainly insist on getting some positive answers when I next see the surgeon.
I had my ileostomy done in May 2010 and like you mine has two openings - my nurse described it as a figure of 8 or a "rose" opening. Most of the waste comes out of the top but there is occasional seepage from the lower opening. I have found that pulling my tummy up, or using a mirror, when applying my bag works. I also self cut my bags as the precut ones always seemed to cause problems.
I have had a problem with leakage once or twice so now use a cohesive seal under my bag - this is a small "washer" that you stretch to fit and provide an extra bit of security. Since using them I have had no problems.
I hope you can sort out the discharge problem. I have episodes of heavier mucus discharge which gives me mild backache but nothing that seems to equate to yours.
If you have any questions about Macmillan we would love to hear from you
You can also follow us on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2014
what are these?