Update (again).

Just wanted to share w/ everyone that I am doing better these days, as far as the ostomy goes anyway. The rest of life is not so easy right now, but getting a bit brighter. Thanks to everyone for helping and supporting me!

Still having issues w/ getting it to work "right", had a colostomy and output is still very watery, still searching for an effective appliance (using lots of convex supplies, etc), and problems w/ the meds I need to keep everything working--insurance continues to deny the only meds that have worked for my chronic constipation, and without those meds, i will end up back in the hospital w/ an NG tube and more. We tried stopping the meds one time for a 3 day period, output stopped and it was just really horrible--I'll spare you the details!!

BUT…..

i'm starting to feel more positive about this whole ostomy thing! "Talking" with people on the forum and working w/ a really good ostomy nurse has helped a lot. And my family has been very patient with me when i have my "pity parties" every now and then. Getting closer to a good pouching system and my stoma has shrunk lots and doesn't freak me out anymore…actually, i find it sort of interesting! Mentally, I feel like I will be able to deal with this thing long term, which is good cuz it's permanent! Physically things are very new to me…new anatomy, plus my stomach makes noise--something i haven't heard/felt in years! Sometimes i hear a noise and it takes me a while to realize it was my gut. I'm not used to my guts actually moving things around. It fascinates me!

Still have my ups and downs, but definitely have gotten past my "i don't want this thing! Take it back!" stage. Feeling more in control of the ostomy and more confident in dealing w/ it.

Thanks for all the support! I'm sure i'll be back soon with more weird questions etc.


Sunny.

Thanks. Saw my surgeon's nurse today--she's wonderful. Got the med situation figured out (hopefully)! She cleared up lots of my fears/anxieties, said that because I have the neurogenic bowel, etc, things will likely never have a "normal" or "regular pattern" for me. She said it will most likely be lots of ups and downs and changes from one day to the next, pretty unpredictable. But, as long as the ostomy works and i don't get any obstructions or dehydrated from excessive output, I'll be ok. She said don't compare myself to others, it will never be the same. But it will be ok. Feel really good about the appt and the talk we had.

Will get my meds, but only a once a day dose is allowed by insurance and FDA, so have to get the higher dose and split it into 2 doses for the day. Shhh!! Don't tell anyone I'm cheating. Docs and I feel it's the only way to keep things moving and stay healthy. Normally they wouldn't do it that way, but my situation is rather unique. Sometimes long periods of time w/ no output and others i have the crazy spasms that basically empty my guts in a super short time.

Pains the other day went away after a crazy cramping and spasming in my guts which lead to an 800ml output in like less than a minute! Glad it went away but weird!!

I am happy to have the ostomy, despite the issues w/ it. No more horrendous 2 week at a time constipation, along w/ the bloating and feeling sick. No more bowel purges (YUCK) and bowel incontinence. I might just have a life after this.


@UC: how are YOU doing? Been thinking of you and hoping you are feeling ok. Wish i was there to help you out or just keep you company!! I hate thinking you are going thru this alone….I might not be there physically, but I'm "here" for you as much as I can be!


Thanks again!