Stoma Pain and Irregular Activity: Seeking Advice

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jonnyuk
Feb 19, 2013 1:10 pm
Hello,
I have an illeostomy and also subsequently a sugarbaker technique parastomal hernia repair.
A couple of months ago I notice a slight increase in pressure around the stoma and then 4 days ago I suddenly started experiencing a great deal of pressure and discomfort around my stoma and it started working quite iratically. When it was working it was very painful indeed. It felt raw. It hasn't ceased working for more than half a day but there do seem to be bigger gaps between activity than before. I've been on liquids ever since this started but the discomfort and pain hasn't eased off at all.
My wife has had a upset stomach and I was wondering if I got the same thing and perhaps the escess stomach acid has slightly damaged the intestine leading to the stoma.
Any ideas ...?
Thanks
John
trudel
Feb 24, 2013 11:15 am
Hi jonnyuk

just read your post, I have experienced something similar, it started a couple of weeks ago when I was rushed into hospital with what turned out to be a compacted bowel, I was only in overnight. I have a colostomy and had it over 2 years with no problems so this happened out of the blue and also was still having output although quite firm, I was kept on liquid for 24 hours and given some meds to move things along.
Came out next day still a bit tender but things moving. However I thought I could get back to normal but making sure I watched my diet, but since the episode and having the ducosate and tried movicol output has been very liquid and my stoma bleeds very easily and quite a lot. Also woke up two days ago with pain like stitch around the stoma area and feeling like pressure like I needed to pass a lot of wind but nothing would happened.
Have stopped the meds because to me the output is too loose and I worry that the pain is caused by the stoma bleeding or infection. Oh and I have a heavy cold as well so didn't know if this was having an effect as well. If things haven't settled by tomorrow will ring the oncology clinic and let them know what happening and get some advice.
If your worried and the pain isn't letting up you need to get seen to asap as with bowel problems bad things can happen really quick, with me I had a tummy ache at about 10pm and by 6am next morning I was being rushed by ambulance to A&E, prior to that no problem at all.
Good luck and speak to the experts

Trudel
Posted by: Nini4

Well,  I  hit the two year mark. I went back and read my posts from when I first found this site. I was very fortunate in that I stumbled upon it only 4 weeks post op. I have said many times that this community really saved me. The first 2 weeks after my surgery I shut down completely. It wasn't until about the 3rd week that my son came in to my room, flicked on the light and told me I was going to have to get back to living because I was scaring him. I had fallen into such a depression.  He  ticked me off,  but it also made me stop and think- what was I going to do? Feel sorry for myself and sulk, or be grateful I was alive. 

I've re-read my journals from that time and it was after my son kicked my butt, so to speak, I took an honest inventory and had to dig deeper than I've ever had to. I mean, I had survived a pretty nasty divorce, after a pretty crappy marriage and that was tough. But this was different. I felt like I was now a handicapped person who would be limited in their life and be looked at as a freak. My mental state was precarious, at best. 

But then I found this site. I just lurked a bit before posting. I read so many of the other stories and I started to see just how full my life can be, I was not handicapped,  and certainly not a freak! The stories of survival, the sense of humor, the support and compassion was inspiring.  It was then I made myself get out of the dark, and get my sh*t together.  

Not all rainbows and sunshine at first, hardly! But with grace from myself - to myself, and the kindness and willingness of the folks here to be supportive, non judgemental and openly share intimate details about their life circumstances,  l not only survived but thrived. 

I think of all the years I had suffered with such extreme pain, barely functioning,  and the many hospital stays and how that is all behind me now.  (All fingers, toes, and legs crossed that I never have to go near a hospital for myself ever again. I think I'd rather have a fork stuck in my eye. I loathe every about them.)  

So, to everyone who has been a part of this journey with me, to say thank you is not enough. I'm forever grateful to know you all.  My Angels, each one of you. 

 And as the Grateful Dead famously said,

"what a long strange trip it's been!"

Im so happy I'm tripping with you all.


beatrice
Feb 25, 2013 6:21 pm
Hi jonnyuk,

Hope that you are feeling much better by now.
Just want to agree with trudel ... those with ostomoties that experience that type of pain ... off the emerg!

Things can go downhill really quickly.

We all have the little cramps and odd feelings that we come to know ... but anything that makes you gasp or cringe repeatedly is something to take seriously. And since your output is irratic ... more reason to be concerned.

Let how know how you are doing.

All the best,
Beatrice
skidder
Mar 03, 2013 6:13 pm
Hey jonnyuk, just now opened n saw your post. Could be acid output...notorious for skin breakdown. Is skin immediately around stoma discolored? In my case that indicated a hernia. Symptoms also included bulges in skin around area covered by wafer, purple,gray discoloration on bottom half of stoma. Went for check up with GI doc and it was a hernia: was repaired with mesh...no problems and that was 2008
Good luck...peace
jonnyuk
Mar 04, 2013 8:11 pm
Hi..
Thank you for your advice & kind wishes ...I just thought I'd update ..
I kept up the liquid intake and managed to get an appointment with my surgeon.He scheduled me for a CT Scan. I few days after meeting him, about 8 days afterit all started I suddenly found that the burning sensation eased a bit and thenkept getting better each day. I now have a date for the CT scan (this Thursday)but I'm going to cancel as I feel pretty much back to normal. I now chew myfood more, eat smaller portions and drink more. That was an experience I wantto try and avoid again if possible! On the bight side I lost 1/s a stone andI'm now at my idea weight. This seems to have helped with the pressure I'vebeen feeling around my hernia repair although it's a bit early to say.
Regards and I hope you are all ok ..
John
 

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