endless and unseen battle
Thu, January 15, 2015 7:59 PM
Was diagnosed in Aug of 2012 with uc at the age of 18. Tried every medication I could. Asacol, predisone , 6mp, remicade are just some. Ended up having my large intestine removed because the Dr told me with no large intestine I would have no symptoms. I couldn't go on with the bloody diarrhea so after 2 years I gave in and had the surgery.I'm now 20 and recovered from the surgery but my symptoms are flaring up again and I was told the tests they ran showed I have crohn's disease and will need to go back on remicade. I guess the reason I'm posting this is just looking for some hope. Being as sick as I was I pushed away most of my friends and really don't talk to anyone about how I'm doing mentally.
Joined Dec 21, 2014
Sat, March 14, 2015 11:23 PM
Reply posted for apl2018.
Finally someone I can totally relate. I have CD 10 years already. Had my Colin removed did remicaide asacal, prednisone and nothing. I'm miserable. I live in the bathroom. Fistula's are so painful. Crohns pain is no joke. I take something for pain also. What a life. I'm sad a lot cause no one understands. Be well my friend.
Joined May 14, 2011
Fri, February 06, 2015 12:16 AM
Reply posted for ria75.
I really connected with this post. IN 2014 I spent 4 months in the hospital and just got out from doing 4 days even spending my birthday with IVs blowing out left and right due to my veins being so collapsed and scared from multiple surgeries. I think what bothers me offends me to rhe upmost is when medical professional say " you are having anxiety are you sure you are not abusing your pain meds, insinuating thah I am an addict. However I am licensed mental health therapist and also Dually credentialed to treat co-occuring disorder. And I know what the symptoms of anxiety and addiction are and I have neither. So I say wouldn't you (the medical staff) have some anxiety when you have uncontrollable diareaha, vomiting with no warning what so ever? I just wish people would not jump to conclusions. It is not easy to go into the ER or drs office to rattle of a list of embarrassing and torturous filled symptoms. I too feel that this is an endless battle- I try so hard to make sure my "outer shell" looks great for the world just so it can make people think I am just fine however they have no idea that at that very moment the conversation is occuring I could be gritting my teeth so badly due to discomfort and pain
Joined Jan 11, 2014
Fri, January 30, 2015 12:57 AM
Reply posted for baystate87.
Hey your story sounds fairly similar to mine and I had no where to turn either it was/is really hard especially when you are burning the medications. Im 25 year old guy and medical student from Virginia diagnosed at age 17 and ive failed pentasa,pred, 6mp, remicade, humira, cimzia+6mp and just had ileostomy so we will see
I hope you feel better as soon as possible. keep your head up
www.crohnspatient2patient.wordpress.com
Joined Jan 26, 2015
Fri, January 23, 2015 8:45 PM
Reply posted for baystate87.
Don't just give up based on medications. Try focusing on a healthy lifestyle and diet. There are tons of books out there and resources to try. I know it's hard when you're sick, but if you can even make tiny improvements, you will feel a lot better mentally and physically.
My doctor kept me on immunosuppressants after my surgery and I've been in remission. Sometimes it's better to tackle things before they get worse. If you're not feeling confident in your doctor's decisions, maybe it would help to find a doctor that will explain things to you a little better and work with you on different options for treatment.
I made the mistake of hiding my disease from most of my friends for most of my life. Looking back, I wish I had been more open with people. You'd be surprised how many people know someone with Crohn's or another autoimmune disease and can really sympathize.
Joined Aug 23, 2014
Alrightalright