Symptoms of parastomal hernia and stoma pain?

How do you know if you have a parastomal hernia? Is it painful? I realize there is supposed to be a 'bump', but I've gained 20 lbs. since surgery (sigh...........) so can't go by that.

My main question is what could cause pain around the stoma area - like deep inside pain, not skin surface pain. Could that be a hernia? It isn't a blockage because I have output - actually yesterday was a great deal of output more than usual - can the stoma get sore or the bowel get sore after a day like that? Very new at this and worried about a hernia. What are the symptoms? How would I know? My doctor is an idiot so don't even go there. He's afraid of my bag and my stoma, and there's a dr. shortage so I'm stuck with him.

Hello HarleyDoll. It's a good question you ask. However, it is not so easy to give a straightforward answer because hernias manifest in different ways. Part of mine is obvious from the outside because there is a swellingbut I was much more concerned with what was causing pain on the inside so I took a trip to see the stoma nurse. She poked her finger right down inside the stoma and found out that the pain was being caused by a faecal lump being blocked by a muscle (that is involved in peristalsis) moving right across the hole at the back of the stoma and blocking output. Now! the point of this story is that I irrigate and do have output so this muscle is obviously not blocking the output pathway all the time. I figured if the nurse could poke her finger in the stoma, then so could I. What I found was that this circular muscle is amazingly strong as it tries to push my finger out. I have to push hard to keep it in there and the muscle squashes my finger like you wouldn't believe. However, after a minute or so, it relaxes its grip and the exit path seems to be perfectly clear. The problem then is that if there is faeces in the pathway, it has nothing to push it out because the peristalsis isn't working. In my case, once it starts again the muscle moves across the whole and stops the output. I think the term is 'catch 22'. I get pain when faeces or gas is trapped behind this muscle blockage but becasue I know what is causing it, I no longer worry about it. If it really gets bad, then I irrigate again to clear it but most of the time I just put up with the pain until my usual irrigation time comes round becasue I like to think that getting into a regular routine is training the thing to behave itself and if I start getting out of that routine, it might decide that I should be irrigating more often. My thoughts are that I prefer to be in control of it, rather than let it control me so I try my best to stick to my normal (abnormal) routine.

I hope this helps but I would EMPHASISE  that my initial enquiry was with the stoma nurse and that was very instructive in my case.

Best wishes

Bill

 

Good morning Bill: As per usual, your responses are so very helpful for me. This one went beyond the extra mile and I have copied it off for my files and future reference (with the above-mentioned doctor). Some of the doctors need to be schooled as they know very little about the stoma or anything to do with it.

What you say makes sense. Every day there seems to be a new pain of some kind for me and I am contemplating getting the entire colon removed and having an ileostomy. But not yet. I have had many complications with what is left of the bowel. Irrigation is not an option for me, this has already been discussed with the ostomy nurse. I do have motility issues, they existed as part of my medical issues before the surgery, and not only have they remained but have gotten much more painful.

Thanks again for such a thorough reply. I am also absolutely amazed at what you said about the strength of the stoma and the muscles in it. This would certainly explain why 'spasming' in my bowel is so very painful. I have given birth before and the pains can be that bad at times. Not all the time, but sometimes. So yeah, another surgery might be the way to go for me yet.

Have you found any product that will assist in neutralizing gas buildup? That can get extremely painful.

Have a great day Bill!

Hello HarleyDoll. Thanks you for your comments which are very flattering if not scary. The posts I write are only sharing my thoughts like anyone else. Sometimes I think I ought to stick to writing in rhyming verse because it seems that people don't read that and take the rhyming verse seriously. I don't expect people to think that I am in any way authoritative on the subject. Although, pushing my finger into the stoma and keeping it there has been very interesting and informative.  I now do it regularly because I am finding that the shape of the inside of the stoma has not stayed the same over a period of time. Knowing more precisely what I am dealing with has helped a lot in overcoming some of the difficulties with managing it.

As for gas buildup, I don't much bother about it now because I use a stoma plug, which is a bit like a small tampon attached to the middle of a wafer. These keep the channel open and are made of a porous material that allows the gas to escape, so there is no build up at the exit point. I do have gas further into the bowel, but although it's painful, I know what it is and so I just wait until it moves along and dissipates. It's one of those things that even though the pain is extreme at times. if I know that it is going to 'pass' I just put up with it until that happens.

There have been a number of past posts dealing with how to manage gas buildup and if you go into 'collections' on the left of the screen you will probably find something to answer your questions on the subject.

I hope this helps

Best wishes

Bill

Interesting, and makes sense putting your finger there for an extended period would affect the entire large intestine. Curious what you look for when examining the area. Is there a device that penetrates to check blockages or is that best done with someone with small fingers? Preferably a woman, I recommend. Cheers, Michael

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Hello Mojowin.

When I first had this problem it was the stoma nurse who stuck her finger up there and told me what was amiss. I figured if she could do it, then so could I (next time). What I am feeling for is anything that I did not know was there before. I would liked to have purchased a proper medical camera system, but I suspected that, if the problem is a faecal blockage, then I would not be seeing much other than that! Anyway, not being medically trained, I am not sure that whatever I saw would be recognisable for what it is so, perhaps these video explorations are best left to the medical experts.

Best wishes

Bill