Have Interstitial Cystitis and Need My Colon Removed

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5
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578
Toona17
May 29, 2023 2:23 pm

I have interstitial cystitis and need an ileostomy or possible J-pouch. Also, I have a torn gluteal muscle that cannot be fixed, so I use a TENS unit every day, all day. I was wondering if anyone else has IC too and if it affects the bladder. How can I wear electrodes on my upper buttocks and not hit the tender gluteal area with a wrap? Clothes hurt it, and wearing something tight over it seems impossible. Plus, I have to turn it back on every hour.

CrappyColon
May 29, 2023 3:44 pm

IC can be irritated by surgeries, like if you have a catheter, medications given through IV during/after surgery, whatever they have you taking orally after. What works for calming your IC now? What are the health reasons behind an ileostomy or J-pouch if I may ask?

So there are some wraps that are not tight, I can attach a link for one if you want that is soft/non-irritating. I've been thinking it through... I think you'd place the electrode pads on the area while you're getting ready, then the wrap over that, then attach the wires to the electrode pads under the wrap and it shouldn't interfere with whatever you're wearing.

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Gemini16
May 29, 2023 11:20 pm

Hey Toonal. I have IC, which does cause issues with the urethra and bladder, but that isn't the reason I have an ileostomy. Are the electrodes you are using to calm down nerve issues? As far as wraps, there's Ostomy Secrets, but I just googled ostomy wraps and had a couple sites come up.

Toona17
Jun 01, 2023 1:21 am
Reply to CrappyColon

Thank you for answering. I am on a few drugs to calm my bladder and some supplements. Elmiron was taken off the market so I had to give that up. It caused macular degeneration which I now have.
I would like the name of the wrap you mentioned. I think the electrodes under should work. Not sure it will handle all the pain in that area. Does the stoma have to be covered by clothes? If I wore lower jeans then the wrap that would work? High-waisted pants really hurt me so most of my pants and skirts sit below my navel. Do you have to be careful if what you are wearing hits right under the stoma?

Toona17
Jun 01, 2023 1:32 am
Reply to Gemini16

I have IC but I tore the muscles in my gluteal area and the surgery didn't work. That is why I wear the TENS unit to kill the pain. I can actually feel the pain if I slightly push on the area; it is that tender. I am having the ileostomy because I have indeterminate colitis and a J-pouch is a risk because there can be Crohn's involved. My bladder is painful to the touch, so I have to make sure the bag is not pressing on it before I do this. And the band is not too tight that the TENS will not be able to stop the pain. I am looking at quality of life, and I have many bad polyps but don't want to start my IC up or have pain in the glute I can't stop.

 

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Past Member
Jun 02, 2023 1:57 am

I had IC and had my bladder removed on 4/25/23 and now have a urostomy. My colon is fine and I go to the bathroom normally. I don't understand why you need to have the colon removed because of having IC.