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preparing for surgery as cant get off the steriods and im only 20 years old :-(

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Ulcerative Colitis
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Posted 1/8/2013 4:12 PM (GMT 0)
Hey there im all new to this site but not new to UC as ive had it for nearly 3 years now, im 20 years old and have a 2 year old lil girl.... i have had a tough year of being on steriods and not being able to wean me off them without having a flare but now its surgery time ive had enough now.... just wondering if anyone got any advice or tips for me or just someone to have a chat
You can email me if you like
[email protected]
Posted 1/8/2013 5:03 PM (GMT 0)
"ive had enough now"

haha, I had enough after 1 month in.

I don't know how people with 20 years under their belt do it. They must be a glutton for punishment. I don't think with my status quo if I could last 10 years.
Posted 1/8/2013 5:53 PM (GMT 0)
I had the exact same problem. Was steroid dependent and almost died getting off of it. (I forget what that's called at this moment)

I'm so sorry you're going through this especially at a young age. Brings back memories.

My suggestion in fact I'd beg you to get your GI to put you on IVIG. Saved my life. Do that before you have surgery.
Posted 1/8/2013 6:21 PM (GMT 0)
Jasmine: Are you taking any other meds? Prednisone is not a cure and just about everyone will relapse once they taper down or off, unless you are taking other meds such as Asacol. If you haven't been on other meds you basically have no chance with steroids alone. Seems like your doc has dropped the ball and you are staring surgery in the face unnecessarily. By the way, there are other meds you could try besides steroids. Unfortunately, they all come with risks.
Posted 1/8/2013 7:07 PM (GMT 0)
Hey peeps i have tryed other meds like azathioprine and methotrexate but still dusnt work and also on folic acid and pentasa..... they refused to give me infliximab and they reacon there isnt anything else they can do for me.... ive been waiting so long now and the steriods are destroyin my bones :-( i dunno if where ur from you can get access to more drugs than what i can plus since i have been diagnosed i havent realy been in remission its always realy bad and im still on 25mg steriods and still seriously loosing blood!!!
Thanks again for posting to me xx
Posted 1/8/2013 7:16 PM (GMT 0)
Jasmine,
I had j pouch surgery 2 years ago. I would be happy to send you and email and chat with you about it to help you although if I were you I would remove your email address from here. I don't ever post my email in a public forum...I learned that lesson. I'll shoot you an email. :)
Posted 1/8/2013 7:18 PM (GMT 0)
Oh ok sorry lol like i said im new to this **** yess itd be great to hear from you :-) x
Posted 1/8/2013 10:28 PM (GMT 0)
Jasmine,

I am going through the surgery process right now. I am 23, but I had the first step of the j-pouch surgery when I was 21. As a young female, I can relate. If you have questions my email is [email protected]
Posted 1/8/2013 10:35 PM (GMT 0)
Welcome Jasmine. Enjoy your stay on the forum.

At 22 i've been on and off pred for almost 8 years. Personally would never go for surgery there is just so much going on! School and "trying to have a normal life". Hopefully it works out better for you.
Posted 1/8/2013 10:50 PM (GMT 0)
Wow shocking least someone can understand what my mind is going trough...
You was on pred for 8 YEARS!!! blimey surely the side affects where bad as ive got like every single side affect from being on them and i feel awful! Well my feelings are that i feel as isif i am posponing somethi thats just gona happen at somepoint and id rather get it out the way and get on with my life coz i cant have more kids while being on steriods and not going to let it destroy my body!! Xx
Posted 1/9/2013 3:13 AM (GMT 0)
i got sick when i was 21, and honestly, knowing what I know now, I would have gotten my colon out right away. i wouldn't have wasted 8 years of my life on UC and dangerous drugs. I was 28 when I had surgery and I had an almost 2 year old. I was unable to be a good Mom and I couldn't do anything other than be sick. So I had my colon out and now I can do everything.
Posted 1/9/2013 6:25 PM (GMT 0)
Summerstorm - sorry for my ignorance, but is a permanent ileostomy a permanent bag outside?
Posted 1/9/2013 9:57 PM (GMT 0)
Jasmine you will make it through this. Are you going to get the jpouch?
Posted 1/9/2013 10:15 PM (GMT 0)
I hope i do i burst into tears thinking about it becoz im scared my partner will leave me and i just eont feel sexi anymore and im very low on confidence wihout he bag so im gona be worse with it :(
I think id end up having the bag for healing time and i would get the pouch done in time but they have recomended that i finish my family first before getting it done x
Posted 1/9/2013 11:41 PM (GMT 0)
If someone leaves you because of your bag, then they don't love you for who you are. It does not bother my fiance at all. You cannot see through the bag if you get the opaque ones or if you wear a pouch cover. When you aren't sick anymore you will be thankful for that bag :)
Posted 1/10/2013 2:30 AM (GMT 0)
Minners, yes that's what that means.
Posted 1/10/2013 6:53 AM (GMT 0)
Note the on and off part about my pred usage, and no I got almost none of the bad side effects. (few anger issues and acne)

I would agree if your partner cant handle the change then wrong partner. Although I myself would also feel less confident with a pouch which can mess things up themselves.

Why have they refused Infliximab?
Posted 1/10/2013 9:11 AM (GMT 0)
They said i wasnt bad enough for it so they couldnt fund me for it!!!
He says he wont leave me coz of it butnim scared he will cheat on me .... oh i dunno my head all over place..
I got all side effects like weight gain, acne, osteporosis, brusing, blured vision, thinning skin, hair growth and hair loss, tired, nasea, big appetite, forgetful and my brain cant concentrate on simple things andd depression x
Posted 1/11/2013 8:32 PM (GMT 0)
Yeah but everyone gets different things from different places all over the world so surely not veryone can get the same treatment ....
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