iN NEED of FRIENDS with UC or OSTOMY

My names heather im 22 years old ive been suffering with Ulcerative Colitis since im 15 over the years i have yet to find someone close to my age that suffers from the same thing.... and its driving me crazy because i need some1 who i can talk to that undersands what im going thru. may sound desperate but after fighting with ulcerative colitis for 7 years, 3 weeks ago i had to get surgery and i now have a ileostomy and i need a friend who can relate to me in either way more then ever.

Hey Heather. I'm 26, and I was diagnosed two years ago. I am steroid dependent right now. Currently at 25mg of pred, slowly tapering. My liver enzymes are horrifically low after being on pred for pretty much the last two years. I've tried Asacol, Asacol HD, Apriso HD, Maselamine enemas, sulfazalazine, and am currently on 125mg of 6-mp. So far nothing seems to be working, so I have an appointment on Tuesday to see a colo-rectal surgeon.

I totally feel where you're coming from. People like to think that UC is funny, because you poop frequently. I've heard female's compare the abdominal pain to that of childbirth, and if I were a female, I would never give birth, after going through the pain I've been through.

Send me a PM with your email, and we can exchange emails now and then. I'm kind of in the dark about the whole ileostomy process, and would love to hear it from someone who had it done before I decide to do it.

HI matt i see we have alot in common! im not sure how to contact you can you go in chat?

MattSCESC said...
Hey Heather. I'm 26, and I was diagnosed two years ago. I am steroid dependent right now. Currently at 25mg of pred, slowly tapering. My liver enzymes are horrifically low after being on pred for pretty much the last two years. I've tried Asacol, Asacol HD, Apriso HD, Maselamine enemas, sulfazalazine, and am currently on 125mg of 6-mp. So far nothing seems to be working, so I have an appointment on Tuesday to see a colo-rectal surgeon.

I totally feel where you're coming from. People like to think that UC is funny, because you poop frequently. I've heard female's compare the abdominal pain to that of childbirth, and if I were a female, I would never give birth, after going through the pain I've been through.

Send me a PM with your email, and we can exchange emails now and then. I'm kind of in the dark about the whole ileostomy process, and would love to hear it from someone who had it done before I decide to do it.

THANKS!!

notsosicklygirl said...
Hello and Welcome!

I think you will find quite a few users in their lower 20s here. You may want to change your subject to allow people to see your age. That may attract more people in their early 20s.


It may be worth checking out the ostomy board too: https://www.healingwell.com/community/default.aspx?f=33

Hey, Heather.
I was Dxed in my first year in college. I was doing pretty well for a year after the diagnosis but everything started to get worse exponentially during second semester of sophomore in college, probably due to not taking my meds sometimes, some drinking, eating so much unhealthy food in the middle of the night, stress, supplements(was on at least 6 different ones for weight training), etc.

I was hospitalized recently at North Shore University Hospital(I think you probably have heard of it) and my doctor discussed the possibility of surgery b/c I wasn't responding to high dose IV steroids which was given every 6 hours. But I got much better after modifying my diet(very strict), stopping weight training and switching over to mainly cardio exercises and adding LDN with Humira.

Anyways, we all have our own stories with this horrible disease.
And I think we all need support from each other or something to endure and cope through this without feeling left out.
Fellow UCers know better than anyone else about this sickness more than the doctors so feel free to ask anything :) We're here to share our experiences and help each other.
I'm all ears.

can surgery permanently cure uc, what kind of medication require after ileostomy, and why ileostomy why not j-pouch