Community Forum

So today I had another doctor appointment and was put on 6-MP because the Asacol was giving me absolutely unbearable side effects.  But after paying another huge bill for the prescription and then reading about the possible side effects and then thinking about how I will have to get blood tests on a regular basis it sort of hit me that this is really happening.  I've been coping with my Crohn's really well and have been feeling great, but now I feel like an angry little kid because I'm just pissed off at having to take pills that could potentially harm me despite the fact that I feel totally fine.  To be honest I wish that I could just wake up tomorrow and not have to deal with any of this.

Does anyone have any advice on sort of just accepting everything and learning to deal with it all?  I'd honestly really appreciate it.

 Reply posted for penwestern.

I hope your right about advances/cure, Penwestern! Sometimes I get worried that maybe I won't live as long as I should because of uc.

 Reply posted for christenzilla.

christenzilla,

I undersand your feelings completely.   I never verbalize it but I too like the skinny part of CD.  Then they give me Prednisone and the skinny goes away.

You are right - stay busy and try to take meds and get on with life knowing we are not alone.

You are young (I am 54) I bet there will be a cure or at least some better drugs by the time you are my age.  They have made a lot of advances in the past decades.

Go CCFA and stem cell research!

 Reply posted for heckyeah09.

I was diagnosed in 1999 with crohns of ileum.  For five years I faithfully took the steroids, pentasa, imuran and remicade.  Ended up with drug induced hepatitis.  Dumped the doctors and went without meds til 11/2008 when I crashed and had a partial obstruction and landed in ICU.   Back on Pred/Imuran/Remicade with a surgery consult this Fri.

I wish there were a way around the meds (Prednisone in particular) but  no. 

My GI Doctor scolds me profusely for ignoring my severe disease for a few years but it felt like a vacation.  I don't think harm was done. I bet had I taken those powerful drugs all those years I would be overweight, have a bad liver, osteoporosis and cataracts.  (I am 54)  Who knows?  No cure no relief and no end in sight.

I can't beat the disease so I guess I will just take the meds and hope for the best.  I hate crohns (it is worse when it travels to your mouth/sinus) and I hate drugs but I love my life so if I need surgery I will do it.  If I need drugs I will do it.   

 I hate rude comments about my "round" prednisone face.  Makes me want to sock people who comment. I don't because they do not understand.

 Reply posted for heckyeah09.

Yeah I know how you feel, I started taking medication for the first time. Felt great, didn't think I needed the highly expensive medication that I totally can't afford. So I stopped taking it, then I got extremely sick again. Which the only upside to that was I got supermodel skinny.

Then I realized life really sucks, cause I have to worry about making doctors appointments and buying pills. Forever sick. I am only 22 still trying to learn how to be independent and grow up. I thought about killing myself at one point, then I realized I hit a new low so things can't get any worse from here.

The best thing I can suggest is to not think about it so much and stay really busy.

 Reply posted for heckyeah09.

I know just what you're talking about, I'm in about the same position as you and I know it can be rough.  What helps with me is reminding myself that Crohn's is something that I have, but it doesn't define me.  I mean that yes it's annoying, exceptionally annoying at some points, and occasionally horrible, but 99.9% of the time I'm still me, I can still live my life, and I'm very thankful that I'm able to. 

Remember that your life is still about the things you love, not 30 seconds of pills a day.

 Reply posted for heckyeah09.

Hi Hechyeah, I have Ulcerative colitis and been living with it for a year and a half now. I was diagnose with this disease on June 6,2007 and it has been a nightmare. I was on Asacal too when I first started and then to Prednisone and now Imuran and lialda. My disease and your disease is very difficult to understand and why we have it doctors dont know. I wish that no one has any of this diseases. I know how you feel and I feel the same way. This is a setback in our lives as well. But we just cannot giveup we need to keep hoping that their will be a cure some day. I will keep you in my prayers. From Kirkbute

 Reply posted for heckyeah09.

Hi Hechyeah, I have Ulcerative colitis and been living with it for a year and a half now. I was diagnose with this disease on June 6,2007 and it has been a nightmare. I was on Asacal too when I first started and then to Prednisone and now Imuran and lialda. My disease and your disease is very difficult to understand and why we have it doctors dont know. I wish that no one has any of this diseases. I know how you feel and I feel the same way. This is a setback in our lives as well. But we just cannot giveup we need to keep hoping that their will be a cure some day. I will keep you in my prayers. From Kirkbute

 Reply posted for heckyeah09.

Hi Hechyeah, I have Ulcerative colitis and been living with it for a year and a half now. I was diagnose with this disease on June 6,2007 and it has been a nightmare. I was on Asacal too when I first started and then to Prednisone and now Imuran and lialda. My disease and your disease is very difficult to understand and why we have it doctors dont know. I wish that no one has any of this diseases. I know how you feel and I feel the same way. This is a setback in our lives as well. But we just cannot giveup we need to keep hoping that their will be a cure some day. I will keep you in my prayers. From Kirkbut