Those with Ostomy baggies....

[Sea_Star]

did you find medication plays a huge part in preventing or holding off on you getting a Stoma til later? Just thinking if medication (particularly LDN) guarantees a stop to disease/inflammation progression, moreso microscopically. I ran away from the diagnosis, the mainstream medications, and NOW that I have a Dr. open to alternatives, now I'm feeling symptoms and thinking of surrendering myself to the "harsher" ones, out of fear the LDN is too "soft"...

i'm scared...25 y/o and haven't LIVED....never been on a date or anything, which is why I want to prevent this getting worse, at the same time prevent the risk of cancer...
even the FDA says the efficacy and safety of Mercaptopurine for IBD has not been established....

Anywho, just curious about your stories and advice....thank you I admire the strength each of you has!

 

[theOcean]

Hello, just letting you know I've moved your thread to our stoma section!

I'm not a person with an ostomy, but from using the "harsher" medication (Humira) you've been running from, I've managed to get myself into remission and don't feel like I have an illness at all anymore.

 

[vonfunk]

I was a couple of years older than you when I was diagnosed. I almost lost my colon during my first flare up. I was hospitalised for close to a month and made an 11th hour recovery a couple of days before they needed to do surgery. I went through the entire cycle of meds available and was able to delay surgery for a few years, at the end of it all. I chose to have the surgery because I was on long term predisone to keep me in remission. The long term effects of that are terrible and I chose to have the surgery to avoid those, and due to the state of my colon I would have most likely developed cancer in the next 5 years and would have needed to have my colon removed anyway.

I figured it was easier to have it out and be over and done with when I was still young, as opposed to waiting for all of the worse things I was facing to occur and force me to have it out.

 

[Jeff D.]

I was diagnosed at 14 and after many years of being in denial my rectum grew so much scar tissue that it is about as wide as a number 2 pencil. I've got a temporary ileostomy and my life is much better, though in the next few months I'm likely going to need surgery to remove my colon, rectum, and anus. If I feel this good now I can't wait till after my next surgery. I guess what I am saying is that it depends on your disease. If your colon looks fine then you are okay with less "harsh" medications but at some point you just may need something like Humira or Cimzia, which is what I am on. Take care