Just need to vent

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Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 3/3/2009 9:28 AM (GMT -7)   
I've been on cimzia for 2 months now and I don't see any difference yet. My GI said if there is not any change he wants me to go back on humira. I just got to the point that I can walk again. And my cholesterol is normal again, but he wants me on humira because it helps the crohns just not the rest of me. I'm getting sick of the bathroom again. I want something to work that don't cause more problems. And I'm sick of the blotting on pain. It seems that the new cimzia is a dud for me. How do you know how bad the crohns is worse or the same???????? Do you have to wait until there's a major problem??????? I'm very confused.. My regular doctor won't talk about the crohns, and I have to drive 200 miles to see my GI.... I look and feel like I could be 8 month's pregnant, and I can't have kids so, that's not it. I was told that on my right side I have around 3 foot of small intestines infected with the crohns, can it clear up or just get worse?????? I have one pill I can take that helps but just starting the cimzia I don't think I should. My GI thinks everything is fine. He gives me pain pills, and it seems like every other kind of pill,shot, or what ever. I'm sick of this. I want my life back. I don't understand how most of you can get up go to work and deal. when I go to my GI I have to take 2 days.Just to go to town takes all I have. I'm to the point I want to scream.



Dawn turn yeah
49 Female
Dx June 07 Crohn's take asacol 2x3 a day ,lotrel for HBP , omeprezole for stomach , potassium , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08 on 1 shot a week, vit-B 12 shots , crestor,off crestor,now pravastatin,off humira, pristiq, abilify,
Dx Bipolar May 08


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/3/2009 10:13 AM (GMT -7)   
Looking at your profile it looks like you already tried Humira. Did it work for you the first time? Not sure I am understanding why he would want you to go back on something if I didn't work the first time.

I am so sorry you are hurting so much. The only way I make it to work daily is because thankfully I am in remission of sorts right now. Would maybe another round of Pred help to get things back under control? Sorry I am not of more help, but know I am praying for you.

Hugs,
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 3/3/2009 12:50 PM (GMT -7)   
I'm so sorry that you're going through this...are there no other doctors you can see? It's nice yours is willing to prescribe pain pills and try other medication, but it's ridiculous that he/she thinks everything is okay. I hope you feel better soon. You shouldn't have to go through this...
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 5 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


cherriepie01
New Member


Date Joined Aug 2007
Total Posts : 13
   Posted 3/3/2009 1:12 PM (GMT -7)   
Hi NeNe- I am so sorry that you have to go through this! I was in the same position with my old GI and methotrexate. He would not take me off the methotrexate even though i was seriously ill form the side effects, and had made no progress on this medication. At that point i was in and out of the ER and on many pills and was not at all ok. The best thing I did was get a second opinion, this new doc is great, immediately put me on Remicade infusions every 8wks. I've been in remission for about 2yrs now, and I take it one day at a time. I was at that frustration point when I found this website and it helped me to know that there really are people out there who understood EXACTLY how I was feeling. I could not get out of bed most of the time, was depressed, lost a lot of weight, all do to this disease. The more I came here for support, hte better I started to feel, talking about this helps a lot too. I'm here if you need to vent some more, sincerely Andrea.

25yrs old, Chron's disease, diagnosed September 2006, currently on Remicade infusions every 6wks, prior...methotrexate,pentasa,asacol, cipro and flagyl, prednisone

CUBFAN26
Regular Member


Date Joined Feb 2009
Total Posts : 46
   Posted 3/3/2009 1:19 PM (GMT -7)   

I know how you feel, i have been in a flare up since October 2007 and have been riding the rollercoaster of Meds since then.  The prednisone made me ballon up and gain about 30lbs and  still felt like crap everyday.  But i get up and deal with it the best i can.  I always think that there is someone who has it worse than me who has a smile on there face so why cant I have one on mine today.  Dont get me wrong i still have days where feel like crap and cant move and dont want to be around anyone.  But i try my best now to laugh at my situtation especailly when I am in pain.  In my mind it helps.  My doctors put me on Humira and i went through the first two rounds of shots and was finally feeling better then I got histoplasmosis and was in the hospital for 11days.  When I got out they took me off all of my drugs due to the fact that the drugs i had to take to get rid of the histoplasmosis would interact with EVERYTHING. So here i am 7 months later still in pain and 3 days away from surgery.  What really gets to me is I am just 28 years old and i feel like i am 82.  I just want to feel better too.  I too wanna scream and I do in my car all the time.  i turn up the radio and then just AHHHHHH as silly as it sounds i feel better after i scream so maybe you could try that.

Sorry if I rambled, do you have family that can help support you?  I find looking at my 9month old daughter really brightens my day and makes me want to get better if not for me for her and the future we have together.  I hope that you start to feel better and get a control on your crohn's.  i will pray for you and better health.

good luck and smiles turn


Crohn's since June 2005
Relapse/flare up since Oct. 2007
Been on Pentasa, Asocol. Prednisone, Entocort, Imuran, Protonix, various anxiety meds, painkillers
 
Humira for 1 month from July 2008-Aug 2008 then contracted histoplasmosis and was in hospital for 11 days in Aug. 2008

Surgery scheduled for March 6th 2009


Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 3/3/2009 1:30 PM (GMT -7)   
Nanner,I was on humira I was to the point I could hardly walk, and my cholesterol went sky high. But almost all the side effects form the crohns was gone. He doesn't think it was the humira that caused the other problems. I'm back to almost square one on cimzia. I had a job in 06 but on its hard for me to keep up with my house, I'm always tired, and I start something and I start hurting. I use to be a stocker at JC Penneys, now I have a hard time sweeping my floor. I'm trying to get on SS

LMills,I can go to MAYO if I want but, I don't think they will do any different. I just want to know if this cimzia is going to work or not. this waiting for it to help with the problems is driving me up a wall.


Dawn turn yeah
49 Female
Dx June 07 Crohn's take asacol 2x3 a day ,lotrel for HBP , omeprezole for stomach , potassium , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08 on 1 shot a week, vit-B 12 shots , crestor,off crestor,now pravastatin,off humira, pristiq, abilify,
Dx Bipolar May 08


Wild_Swan
Regular Member


Date Joined Apr 2007
Total Posts : 89
   Posted 3/3/2009 6:16 PM (GMT -7)   
hey - i totally get yourfrustration - i'm quite peeved off at the momyself- so am maybe not the best person to be dishing advice!!! things are also having a huge impact on my day to day life. i myself find it more frustrating dealing with the drs & lack of straight answers than the crohns sometimes! i cant offer advice on what you've got going on medically as i dont know. one thing i will say if you dont feel right try & try again and again to tell your dr & tell them again - i'm in the process of turning to a parrot myself at the moment!! your the most important person & you've gotta fight for yourself - when the dr walks out of your meeting they dont have to live with it you do. As for the pain med mania - they're tryin to start me on that too, am a bit reluctant to tho if i can at all. keep asking are you sure my meds are working - if you begin to annoy the drs you know your getting to the right spot!! - my opinion anyway!
 
 


Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 3/3/2009 8:02 PM (GMT -7)   
Wild_Swan, I hear you it seems like most of the time the dr only wants the money.My GI don't seem to believe me as to how I felt on the humira. I think he thinks I was making it up. Like walking is not that important. I've done everything but scream at him, and if I say much its more blood work. I want to know what the inside of me is doing, the last camera pill I did was stuck in the spot that hurts for 3 or 4 hours.

CUBFAN26,I really feel for you at your age its got to be tough, I've had it for awhile almost 10 years before it got so bad and I'm 50 now,its hard to deal with most days. I want that wonder drug, where I can have my life back. I hope you can find something that can help you.


cherriepie01,Some of the same thoughts for you, and I went to MAYO they are the ones that upped the dose of humira. I think if the cimzia don't do better I'm going to go to MAYO again see if they have something new. I'll be a Ginnie pig. So many days I just want to scream but I keep it inside. And thats when I come here ant let it out, I have a great family but they don't understand. My daughter told me I should be use to D. How do you get use to it??????


Dawn turn yeah
49 Female
Dx June 07 Crohn's take asacol 2x3 a day ,lotrel for HBP , omeprezole for stomach , potassium , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08 on 1 shot a week, vit-B 12 shots , crestor,off crestor,now pravastatin,off humira, pristiq, abilify,
Dx Bipolar May 08

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