need advice on crohns treatment

Crohns since 2009 and found out I have it in my Stomach down too, July 2012. I confused! At first I was having drop you to your knees kind of pain! Like someone grabbing my inside and pulling them out of my body and twisting them at the same time. HOWEVER...I no longer have them.(THANK GOD) I tried Aseolc(? on Spelling) and felt bad every day.....also the same with Pentsa (AGIAN? on spelling) I was still running to the bathroom everyday..but felt bad no energy. So I stop. Was on nothing but a nerve pill, which was to easy my stress and keep the pain at bay..which worked. So fast forward to May 2012 and I have a BAD pain that sent me to the hospital and was sent to a new GI Dr. He looked over my test and suggest biological drugs...I researched it and was not happy about the thoughts after talking to my dr he suggest 6mp mercaptopurine...was not happy about that one either however he wanted to run the scope down to see how to really treat me since I was having pain up high...and had never had the scope run down. That is when he found the Crohns in my tummy...after $$$ Blood work he has told me it will be the 6mp!!

ok here's where I have a problem.......I'll explain it this way: I feel like a have the common cold and I have been to the DR and he tell me I have pneumonia and need to be in icu!!!! It's only a cold ..yes I have good days and bad days mainly running to the bathroom, not really any pain.. but I stay tired,very tired. This is how I feel about this medicine and the treatment. Not like I need icu help stat!

Is this normal... or am I in denial??? I do realize that some of you will read this and be like LUCKY..because you (they) SUFFER daily and more than just running to the bathroom. And I truly feel for you...I have had them days earlier on when I had no idea what it was. My dr says I'll have ot have surgery in 5-10 years and with this med.s I can make that 15-20 years before I need it...

Can you really need such a harsh drug to help you with something that feels so small.....I guess maybe I might be the lucky one that is worse off then they feel..but with me luck is never on my side so I doubt.

thanks for listening to me ramble and any thoughts and advice would be great.. <3

Post Edited (willowbrook7) : 9/4/2012 1:19:49 PM (GMT-6)

Hi willow,

Yes, some times the medications prescribed, depending which ones can be considered harsh or have possible severe side effects.
The medications are hopefully (the analogy you used) to keep you at the stage of a cold rather or no cold rather than having pneumonia. They're meant to keep the Crohn's under control or best as possible. Also as the GI suggested to prolong surgery, to push it back far as possible.
Most of us are different in how Crohn's and medications effects us. You may be OK with nothing for a long time, have minimal effects or you may continue to get worse while on a medication. Just like I can tolerate Pentasa and you cannot.

As far as being so tired, as NCOT suggested, blood work can reveal if you currently have any deficiencies.

and nicecupoftea...as for being puzzled sorry I tend to confuse myself at times..sorry!!! :)

I so got hold of the wrong of the stick. I did wonder if you'd started 6MP, but then I thought, 'nah she must have done'... <_<

Hey! I was on 6mp for about 2 years. I got extremely sick on it after my dr went up on the dosage from 50mg to 75mg a day. It was like a "bad stomach flu" for about a week! Cramping in my stomach, vomiting, diarrhea, a lot of pain, but then ... I felt fine! And I was fine on it for almost 2 years,then I started having panic attacks when I went up to 100mg a day. I would get hot all over and my heart would race. It made me feel horrible like I was going crazy! I immediately went off of it, my dr. said it could take 3 months to get into your system and 3 months to get out.

I will say though that in the 5 years I've had Crohn's, it was the best I have felt with Crohn's symptoms. I just had a bad reaction to any time that the dosage was upped. No flu like symptoms though, but everyone is different!

I took Imuran for 2 weeks the first time and my blood counts were good so my dr increased me from 50 to 75mg and that very day I got a fever, headache and neck ache and the worst heartburn I ever had in my life. He pulled me off it and within a day and a half the symptoms were completely gone...he wanted me to try again as it could have been a virus so a week and a half later I took the 50 mg at 8 am and by 1 pm I had the fever back and by 5 pm every joint in my body hurt so bad I couldn't get off the couch. Worse symptoms than the first time. Stopped it again and no more Imuran for me. Do all 6mp have side effects? I was so hoping it would work as it is cheap!!!