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Crohn's Disease Forum » Support Forum » Sometimes I just get mad


08-19-2012, 11:49 PM   #1
HoneySunlight
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Join Date: Aug 2012
Location: Milwaukee, Wisconsin
Sometimes I just get mad

I am 18 years old and I have had crohn's since I was 11. It been hard going from med to med and going to doctor to doctor. And some days, usually before my Humira shot, I just want to be normal. Not in pain or telling people about my poop. Or being in the bathroom for a long time. These two weeks have been bad. I have been having blood in my stool every time I cannot find out what is wrong until Tuesday. And every time I have to stop what I am doing because of pain and tell my boyfriend that I just need to lay down and have him rub my tummy. I feel terrible. I want a normal life where I am not sick. And I wouldnt have to get a stupid colonoscopy until I am 50. Also I like how they include these smileys because this is how i feel.
08-20-2012, 12:05 AM   #2
PattyLynn
Senior Member
 
Join Date: Jul 2012
Location: Vancouver, British Columbia
Hi Honey,
I am sorry to hear that you are having such a hard time just now. It sounds like you have a loving boyfriend who is their to support you and rub your tummy. There are some really great guys out there!

Are you seeing your GI on Tuesday? Are you on any meds besides Humira? How long have you been on the Humira? Have you had any surgeries? Make sure you write down everything you need to talk to your doctor about. Sometimes we can be in such a state that we forget to mention something important when we are with the doctor and once we walk out the door, it is too late! Gotta wait another 6 months before you can get another appointment!! So write down everything and pull out the list during the appointment. Good luck and let us know how it goes.
Hugs.
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DX - Crohn's Disease 1991
Current meds: Azathioprine, Remicade, Pariet, Percocet, Effexor
Past meds: too many to remember! But a super long stint on Prednisone that made me gain 40lbs - I'll never do that again!
Surgeries: Resection 1992; Ileostomy in 2000; Proctectomy 2004; 11 surgeries from 2000-2007 for various problems associated with Crohn's (resections, prolapses, hernias; twisting of the intestine, etc.); Surgery #13 is imminent to repair a fistula and possibly do another resection
08-20-2012, 12:16 AM   #3
HoneySunlight
New Member
 
Join Date: Aug 2012
Location: Milwaukee, Wisconsin
Yeah I love him I have been on Humira for 2 years and also Lialda but I just started that. I use to be on Remicade. I loved it. It made me feel so much better it was like I didnt have crohns anymore. But the tests came back that the crohn' s was active and they had to change meds. And on tuesday I get my test results. Hopefully its not bad.
08-20-2012, 12:28 AM   #4
PattyLynn
Senior Member
 
Join Date: Jul 2012
Location: Vancouver, British Columbia
I am certainly not a Remicade expert as I only just started infusions in Nov 2011 but the reason I am on the drug is because I have active Crohn's. I am sure your doctors know what they are doing but I don't understand why they took you off the Remicade. In fact, this past Thursday I had my first increased dose of Remicade (was 30mg now 60mg) because the disease is active and the lower dose did not put it into remission.
Good luck on Tuesday.
08-20-2012, 12:52 AM   #5
annawato
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Join Date: Apr 2012
Location: sydney, New South Wales, Australia

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Hi honey. I certainly get where you're coming from.. Sometimes you just dont want to be on the roller coaster of doctor visits, blood test. scans, new doctors feeling achey. sore tummy etc etc etc. You just want to live a normal life and have normal energy and not be a nuisance for anyone around you. But crohn's doesn't always allow it. I wish i could wave a magic wand for you and make everything better. In the meantime, keep in mind that any of these new medications may be perfect for you. putting you in to remission and eliminating the need for a colonoscopy until you're at least 50. I like these smileys too. Helps get some feeling into the posts.
Anna
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Anna

you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
08-20-2012, 12:40 PM   #6
lola99
Senior Member
 
Join Date: May 2011
I try to enjoy everyday that i feel good. because the days when im feeling bad or having to go to the doctor/have testing,etc i know i'm just going to be upset. Its only natural. You can't let it define you or run your life but a person should never feel guilty about being depressed about it. Anyone would. You can't change it but you can learn to deal with it in a healthy way.
08-20-2012, 07:21 PM   #7
annawato
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Join Date: Apr 2012
Location: sydney, New South Wales, Australia

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perfect advice from Lola- now i just have to remember to do it!!!!
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