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Posted 4/22/2014 8:46 AM (GMT 0)
Hey guys

So I'm in the middle of a very bad flare up. I'm 28 and have lived with the disease for 10 years now. I always have a positive attitude, but for some reason this flare is really getting me down. I also have a 1 year old, so it's difficult to take it easy or get much rest.

I guess I'm in denial with this flare- I'm afraid to go to the doctor as I'm scared I will have to take corticosteroids again. I've been for two operations this year to sort out the Avascular Necrosis I developed in my hips as a result of prolonged steroid use.

I hate asking people for help and I just needed to vent today.
Posted 4/22/2014 9:52 AM (GMT 0)
Go see your GI as the longer you wait the worse it is going to get.
Posted 4/22/2014 11:47 AM (GMT 0)
Hey Lulu :)

I feel for you. It is hard to have this disease right in the prime of our lives as we sort everything out and develop into who we want to be.

Any GI specialist worth their weight is going to want to skip doing prednisone if it's already led you to having a surgery once. There are options to help you... and there are ways to meet your needs whether or not you have the financial capability I'm pretty sure.

See if you can get to the doctor for yourself, and please stay on here. This site is invaluable in the support it provides.
Posted 4/22/2014 1:24 PM (GMT 0)
Have you been on any other meds or on them now? Waiting will only make things worse. You don't have to take pred. There are several other choices, many of them being much, much, better than pred. What country are you in? Do you have insurance?
Posted 4/22/2014 4:40 PM (GMT 0)
Hi, Welcome to the forum....sorry to hear your having a really difficult time...I always think its very hard for people that have young children to care for whilst struggling with U.C...I do think you need to make that appointment to see your GI, fear can be very exhausting, and as someone mentioned, the longer you wait the worse it could become...let us know how you get on.
Posted 4/22/2014 4:53 PM (GMT 0)
Sorry to hear about the problems. I have 2 little ones myself, and I know how that can add a whole other layer to this struggle. As far as worrying about going to your GI because of meds he/she may suggest, remember...you can always tell your doctor no. There have been meds over the years that they wanted to try again for me, and I just outright said, "No. We need to figure out something else." YOU are your best advocate. You have a voice in your treatment, let it be heard.

Sending lots of hugs and prayers your way. Keep your chin up!

Posted 4/22/2014 7:34 PM (GMT 0)
Go see your GI. I hope you feel better soon.
Posted 4/25/2014 1:22 PM (GMT 0)
Wow thanks everyone for the support. It feels so good to know that people can relate to me because I don't know anyone with UC in "real life". I am so glad I joined this forum.

jswindler0, you really make a lot of sense. I always feel like I'm at the doctor's mercy, but I will use my voice this time. It is very difficult to deal with the disease when you have to hide your exhaustion and frustration from your kids.

Michelejc, Poppie and iPoop I've made the appointment with my GI and hopefully he can find some alternative for me. Thank you.

garylouisville, yes I've tried Nexiam, Asacol, Azapress, Infliximab, cortisone as well as sulphur based medications (and discovered that I'm allergic to sulphur!). The cortisone worked the best although it caused so many complications.
I'm currently on pentasa. I think the flare is getting me down this time because I haven't had such a bad flare up in a year. My doctor actually reduced all my meds a year ago when I fell pregnant, keeping me on pentasa alone. I'm from South Africa and do have insurance.

Thoreau, I feel like there's a million things to get done in life and it's so frustrating when a flare holds you back!

Also, does anyone suffer with really bad migranes during a flare or since you were diagnosed? I hate that part...and the nausea! shakehead

Thanks everyone for your support
Posted 4/25/2014 1:54 PM (GMT 0)
Sorry for your pain. Yes, you have tried lots and I understand your hesitation for more and more treatment. Do it anyway. Be there for your little one as best you can. This disease has a mental component and can bring you down- and the naseau is relentless for my daughter. Turns out, most of it was from acid reflux/hiatal hernia. Helped to get a a strong anti acid. Can't help with the migraines. Best to you.
Posted 4/25/2014 2:12 PM (GMT 0)
Thank you Katmom. I wish both you and your daughter strength.

My mom was my biggest support from the start and it always means the world to me. Your daughter is lucky to have you by her side <3
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