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Urostomy- feels like stoma is being pulled and twisting

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Posted 12/5/2012 7:19 PM (GMT 0)
This is my first post here and I'm desperately hoping that some of you may know what the heck is causing this pain.

I had my bladder removed back in 2000 and then had a revision done in 2005, which involved them moving my stoma from the right side to the left.
Anyway, for the past couple of weeks I've been having some VERY intense twisting sensations coming from the piece of ileal colon they used for my urostomy. This is also causing it to feel like my stoma is being pulled back inside of me. It's also causing quite a bit of pain in my kidneys (I'm guessing that ureters are also being tugged on by whatever is causing this "twisting").
I do have a history of adhesions and the last abdominal surgery I had, it took them 4 hours just to cut through all of the adhesions.

I'd really like to get an idea as to what is going on before I approach any of my drs about this.
So, any ideas, experiences, etc will be greatly appreciated!

Thanks in advance!!
Posted 12/6/2012 2:20 PM (GMT 0)
Wow, over 30 views and no replies . . .I'm guessing that this means that no one has experienced this or heard of anything like this before?
Posted 12/6/2012 6:27 PM (GMT 0)
Hi Sunee.. I'm not sure the views thing is that accurate.. and also people find each post if they're searching for something via google, and they may not even be members of the site. To be honest though unfortunately there aren't many urostomists on here. Most tend to be ileostomy folk.

I'm sorry you're having this pain though. It does sound like it might be adhesions and probably worth a visit to your Dr. Sorry I can't help much more than that! Hope things improve for you soon.
Posted 12/6/2012 8:03 PM (GMT 0)
Thanks! I greatly appreciate your reply!
I truly hate the thoughts of having more surgery for adhesions as I've been told that this next time will be an 8+ hour surgery.

Have any of you heard of using HA/CMC (Hyaluronic Acid/Carboxymethyl Cellulose Membrane) to reduce the incidence, extent and severity of abdominal adhesions?

Yes, I've noticed that most of the topics I've read have been from those with ileostomies. From what I've found our ostomies are set up the same with the exception of the opposite end of my stoma is connected to my ureters as opposed to being connected to my intestines.
Posted 3/13/2013 2:31 AM (GMT 0)
Not many of us with actual Urostomy's. I had my ileal conduit surgery in 2010, due to my bladder and bladder neck being virtually destroyed by radiation damage, in a second attempt to cure my prostate cancer. The radiation failed. I ended up with the Urostomy surgery after being nearly a full year with a Suprapubic catheter in place.

If you want to talk, compare notes, etc, feel free to contact me. Be happy to come back here, or you can e-mail me to contact me.

Good luck.

david in sc
Posted 3/13/2013 2:53 AM (GMT 0)
Whoa! Different situ, but I can sympathize. I have a third ileostomy stoma revision that so far wrap wood, I can pass liquid diet through. Been on liquids for 5 months and have some wasting syndrome called cachexia. Like my hair, eyelashes, muscles, bone, teeth, skin, you name it and it has withered, decayed, or atrophied tho my blood work looks surprisingly good. I have all this distention by night time and retain up to 8 lbs of liquid in my body by the end of the day. I think I have some horrid organ function problem from all the malnutrition. Have a few consults to go to about a new stoma and likely move it to other side, BUT....who the heck knows. I have Soooo many adhesions. So while not familiar with your specifics, I can relate to the adhesion and the frustration issue. Feel for you. Rosemary Good LUck
Posted 3/13/2013 7:11 PM (GMT 0)
I know the OP posted this a while ago but the www.uoaa.org has a forum for urostomies.

good luck!
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