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Stoma pain interfering with work

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Posted 11/25/2012 2:45 AM (GMT 0)
I've had three stomas so far, and this third one is the only one that has caused me this many problems.

about three years ago I had my colon removed, and the first stoma was beautiful, the only pain i had was caused by my inexperience at dealing with the bandage when I would have bouts of terrible skin irritation, but that made sense at least and was my own fault for not being diligent enough. My second one was the one I was given during the j-pouch construction when they gave me a new one so that my j-pouch could heal properly. That one I also didn't experience any pain with, and I was taking care of my bandage well by then so that one went by perfectly. The only pain i ever experienced with these two was when i didn't chew my food enough or i would eat something that came out to bulky--and even then it was rare for me to experience pain from them.

This third one i had to get when the j-pouch failed and I had to go back to living with an ostomy, a choice that I was fine with as my main goal in life has always been to be a mom, and the more abdominal surgeries someone has the less likely to conceive they are.
Anyway, for the first couple of months i didn't experience any problems and all was going well, but then about once every few weeks i would have terrible pain that would make it unbearable for me to even walk around. Then it started to happen about once every week, and now it happens at least once a day and usually after I eat (no matter what it is or how well i chew, the pain always seems to come) my natural reaction would be not to eat, but with my high metabolism and no colon to properly digest what food i do eat, i'm pretty thin and not eating would make it hard for me to function (i have no idea how anorexics manage).

shakehead

I have a terrific job as a server at Medieval Times, but it's very physically demanding. I love working there but today about 1/3 of the way into the show i had to ask my boss to get someone to cover my section, I was in so much pain that I could barely make it around the arena. I thought that having an ostomy would end all the pain that UC has caused me, I mean remove the problem organ (my colon) and all should be well, but apparently that isn't always the case. My output is traveling, so I don't think it's a blockage but i'm also experiencing this sore, bruising pain to the upper right that I've seen other people associate with a blockage.

I'm so confused, and my doctor thinks its what i'm eating, but with an ostomy your suppose to be able to eat almost anything that a normal person would. I don't want to lose a job I love because of this issue, and I don't know what to do about it or what it could be :(

Have any of you experienced this or know what it could be? I'd really love the help
Posted 11/25/2012 12:29 PM (GMT 0)
So sorry that you've had to go through so much.

Could it be adhesions from the surgery? A stenosis (closing of the fascia around the stoma)?

Is your doctor at a teaching hospital? It sounds to me like you need a second opinion, preferably from someone at a teaching hospital -- they see a lot more of the people w/complications. It doesn't sound like your doctor is taking this seriously enough -- this is not normal. Have you had a CT scan recently to check for any issues near the stoma? Any kind of exam of the stoma itself?

Hang in.
Posted 11/25/2012 7:02 PM (GMT 0)
That sounds a lot like what happenedto me in the months leading up to my adhesions. It was worse with some foods. I had output just a full pressure feeling, and sometimes pain. Then one morning I woke up and it was all twisted shut!
Have the dr run a scan or mri,whatever they use to see. I was out of it when they did mineand I don't remember.
Feel better!
Posted 11/25/2012 9:12 PM (GMT 0)
I'm sorry you are going through this. I think the first thing is to get your doctor to take your pain seriously or to find another doctor. Are you dealing with a surgeon or a GI doctor? If you are dealing with a surgeon, I might recommend going to a GI doctor also.

So.. you have had a lot of abdominal surgeries since you had a failed jpouch. More abdominal surgeries, means possibly more adhesions which may be causing semi blockages. One way sometimes to tell if that is the problem is to go to a softer dieter, or even a liquid diet for say 24 hours.. and see if that changes your pain at all.

Also - wondering about the gallblader?

Have you been tested for celiac disease?

As for tests - seems like maybe a CT scan, ileoscope, and maybe even a small bowel series are needed... to look for inflammation, possibly bowel kinks, see how things are moving through,  and to look up into the bottom of the small intestine through the stoma.

In the interim.. also try eating smaller meals. So instead of 3 normal meals a day, try eating 5 or 6 smaller meals a day. Sometimes that helps with semi-blockage issues. But your pain is really not normal and you need a good doctor to listen to you and get to the problem so you can get on with things.

best wishes.

Posted 11/26/2012 2:05 AM (GMT 0)
Deedles - sorry to hear about this..

You sound like you have a very demanding physical job.....how much and how often to you lift? I'm asking the questions because you may have an abdominal tear and/or hernia caused by the physical activity....plus, having the multiple surgeries has put extra pressure on you abdomen...if you are still having output, and everything is "normal" but the pain....it sounds like a hernia or tear....

Please get a Dr. to look at your abdomen as soon as possible.

Let us know what's going on!

jimmy
Posted 12/5/2012 10:17 PM (GMT 0)
Hey! Sorry it has been awhile and I haven't replyed. I've been cramming for finals and therefore avoiding the computer (which is a huge distrator for me)
Anyway:
We think it *could* be an infection? or something, but I don't feel like that is it because I don't think that would cause the internal pain, and since I'm taking care of it better than I was last time I don't see any reason that I should get an infection with this stoma when I didn't get one with my previous stoma.

I have talked to my GI doctor about it more and sent him images. Me and my parents have also come up with our own theories, and thank you so much for helping me with this, I'll make sure I do the research into what it could be. :) He's going to try to schedule me for sometime this month, he works at Children's Healthcare of Atlanta which is a teaching school (thankfully) located near Emory, and for the most part he corresponds for second opinions with my surgeon since the both work in a relatively close proximity.
I'm not sure if it's a stenosis (can you see those?) From the outside my stoma doesn't appear to be closed up, but maybe underneath the surface or something?

I've heard a lot of people suggest to eat smaller meals throughout the day, and I think I might go ahead and give that a try, since not eating really isn't my thing (food is just to yummy to give up, especially since I already had to do that when I was on lipids) but does anyone know why that helps? Does it promote better digestion? Also are there any good suggestions on what would be good for small meals?

I haven't been tested for celiac disease but I'll mention it to my doctor and see what he says. It could be adhesions because when I don't eat or stay on a liquid diet I don't experience the pain.

And jimmy I had no idea you could get a tear! :0 I thought that excersise was fine with a stoma so I never really worried about it, but now i'm wondering if that could be it. I do hold heavy trays against my abdomen a lot, weighing anywhere from 15 to 20lbs and since I have to use one of my hands to serve I end up using one arm and pressing it against my side (above the stoma thankfully) hard to help support it.

Also something I somehow forgot to mention earlier: There is this mass of tissue stuff right underneath my stoma (that looks remarkably like a stoma) that is actually considerable in size (but it's obvious to me it isn't the stoma, as there is a very thin gap between it and the stoma. I actually have to fit the colostomy hole around both of these. It's sensitive to the touch so thats why I don't think it's part of the stoma, but I have no idea what it is as I don't understand how my skin could end up like that.

Again thank you guys so much for all of the help! :)
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