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getting frustrated - need support


Mon, June 10, 2013 9:41 AM

I am 59 years old and was diagnosed with UC in 2003.  This is my 4th flare up in 10 years and my doctor is having a problem getting this one under control.  I was on Remicade years ago, but stopped.  Since January, I have been on prednisone and Lialda.  As soon as the prednisone was completed, my symptoms started coming back.  I made the mistake of switching doctors, which delayed things.  I have been taking 6MP since April 28th, but it  hasn't taken full effect.  My doctor just started me on Uceris last week.  I know it's new to the market, but has anyone tried this?  It's supposed to be the new prednisone without the side effects  So far, it doesn't seem to be doing much.  I'm on an antidepressant and still feel so sad that I can't get this under control.  I'm afraid to leave the house and I'm afraid to eat.  I feel like I need support from people that understand.

FPO alley
Joined Jun 10, 2013

Wed, August 14, 2013 9:42 PM

 Reply posted for alley.

I am a 32 year old female just diagnosed in 2012 and have yet to get this under control I have had 2 flare ups in less  than a year  from each other and docs have tried prednisone and it damn near liquified my pancreas twice the first time was in the hospital for  5 days the 2nd time was only there for a day cause I had caught early enuff b4 it got worse I am on imuran now but still scared that this medication will not work and I end up with cancer  or have to have something drastic done

FPO amazonice
Joined Aug 13, 2013

Thu, June 27, 2013 7:01 PM

 Reply posted for alley.

I understand your frustration. I am about 10 years younger than you and I am self employed. I have my own appliance repair business and I am the business. There is nothing worse than being in a clients home when UC hits. You don't want to ask to use their bathroom. You feel like your going to go in your pants. It takes every bit of strength you have not to have an accident. I have had to rush out of peoples homes saying I had to go get a part and then made a b-line for the nearest target ,walmart or available toilets nearby.I like you have been on anti depressants (zoloft) for many years. I also have rhumatoid arthritis in my spine and joints. My doctor says that my arthritis and UC are related because they are both auto immune related diseases where your body attacks itself. My doctor has had me on lialda, methotrexate, pregdisone,bacterum ,cipro. Lately everytime I go off cipro the UC gets worse and I get the bonus of the icky mucus.

The best thing I can tell you is this is a life changing disease not a life ending one and we should be greatful for that. One thing you can do to help with you depression is to sit down every morning and make a mental list of all the positive good things in your life like: I woke up today; I have a roof over my head;I have food to eat; etc. Things could be a lot worse. You could have no food to eat or a roof over your head. There are many people everywhere that have to endure those hardships and a disease.

I hope you find some of what I have wrote helpful

Your fellow UC victim ,
Steve

FPO i hate uc
Joined Jun 27, 2013

Thu, June 27, 2013 7:01 PM

 Reply posted for alley.

I understand your frustration. I am about 10 years younger than you and I am self employed. I have my own appliance repair business and I am the business. There is nothing worse than being in a clients home when UC hits. You don't want to ask to use their bathroom. You feel like your going to go in your pants. It takes every bit of strength you have not to have an accident. I have had to rush out of peoples homes saying I had to go get a part and then made a b-line for the nearest target ,walmart or available toilets nearby.I like you have been on anti depressants (zoloft) for many years. I also have rhumatoid arthritis in my spine and joints. My doctor says that my arthritis and UC are related because they are both auto immune related diseases where your body attacks itself. My doctor has had me on lialda, methotrexate, pregdisone,bacterum ,cipro. Lately everytime I go off cipro the UC gets worse and I get the bonus of the icky mucus.

The best thing I can tell you is this is a life changing disease not a life ending one and we should be greatful for that. One thing you can do to help with you depression is to sit down every morning and make a mental list of all the positive good things in your life like: I woke up today; I have a roof over my head;I have food to eat; etc. Things could be a lot worse. You could have no food to eat or a roof over your head. There are many people everywhere that have to endure those hardships and a disease.

I hope you find some of what I have wrote helpful

Your fellow UC victim ,
Steve

FPO i hate uc
Joined Jun 27, 2013

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