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I was diagnosed with Crohn's August 2009, but had been treated unsuccessfully for 4 to 5 years for an incorrect diagnosis of ulcerative colitis prior to that.  I have had a tough last year and cannot remember a time when I actually have felt good.  I was on Remicade infusions up through June, but that did not work for me.  In July everything seemed to go down hill...constant diarrhea, visible blood, pain, bloating, nausea, etc.  Mid August I was hospitalized for two weeks for the first time.  I was released a day before I turned 29. 

The reason I am writing is because I am starting to get pretty down at times.  I am now on Cimzia injections.  I have also been on 40mg of Prenisone since July 23rd.  I have started having hip pain as well as a pain in my mid lower back that shoots down my right buttocks area when I walk.  The prednisone has made me puffy everywhere and is keeping me from sleeping well.  I am feeling unattractive and old...I can't even take a fast paced 30 minute walk with my dogs in the evening because it hurts to walk.  I really don't know why my joints are hurting...the new Cimzia treatment? being on Prednisone so long?  My husband is extremely supportive and tries to understand, but in reality he has no idea what I am going through physically and emotionally.  I can explain to him, but that does not justify it. 

I am not even 30 and am on so many medications and supplements.  I just am having trouble staying positive.  I just want to have a day where I have energy and feel good.  I often feel twice my age.  It is hard and I worry that my husband may eventually get tired of me never having a good day.  I am just frustrated, exhausted, and need to hear some words of encouragement from others that might be going through the same thing. 

 Reply posted for rebeccaou.

You poor thing... we know what you're going through, and it's good not to be alone in it! It's such a crapshoot (ha ha) to try to guess what's causing the pain... because it could be any number of things! It could be side effects of either disease or treatments. Isn't that irony?!

Anyway, one thing that might help is to keep track of when you're noticing that joint pain is at its worst, if you haven't. Crohn's causes inflammation of the joints (can be some inflammatory arthritis), and so if you're noticing it around the same time as you are "sickest," it could be the CD. Or if you're noticing it right after your injection, it could be the Cimzia.

Either way, it sounds like the Cimzia is not working for you and that it might be time to try something else if you're still that sick. I know sometimes docs now have to try Cimzia before Humira or Remicade, because insurance companies dictate what they can prescribe... (My doctor told me that... UGH) Anyway, some insurance companies require you to have "failed treatment" on Cimzia before you can try Humira or Remicade. So if you haven't tried either of those, they both worked really well for me when Cimzia didn't. And I had the joint pain and all of that, and it completely goes away with my Humira injections. It's amazing! I'm so thankful to have found something that works.

Best of luck!

 Reply posted for rebeccaou.

Hi rebeccauo,

I'm really sorry that you're dealing with all of this stuff.  One thing that came to mind when I read your message was about your hip paine.  I started Prednisone recently and was told that a rare side effect of Prednisone is hip paine.  I just wanted to let you know incase you hadn't heard of this.  Also, sometimes Crohn's disease can cause paine and inflamation of the joints, too.

I hope you're feeling better soon!

Take care,

Zinnia

 Reply posted for rebeccaou.

As you know steroids are dangerous and should only be taken for a short period of time.  Please see if you can find an acupuncture school and chiropratic school that you can have interns treat you inexpensively.  That has been my saving grace.  Create a commitment to being positive and well.

Understand that you must be in charge and research and ask all the hard questions rather than leaving decisions to your doctors.  You are responsible for your own health.

Meditate and pray often, call on all angels for guidance as they cannot intervene without your permission.  You may email me at laimingpetersen@yahoo.com.  May God be with you.

 Reply posted for alanschachter.

Thanks for the links and other good information.  I will definately check them out and hopefully start going in the right direction.  I am taking it day by day and trying to keep optimistic about what my future holds.  The responses I have received from the forum have made me feel less alone and made me realize how many good people are out there that are willing to share their thoughts and experiences to help me get on the right path.  That, alone, has really helped within the last few days.

Thanks again!

 Reply posted for rebeccaou.

I understand about your spouse not really knowing what your going through. I love my wife and over all she tries to be understanding, but unless you have UC you really don't know. I have been diagnosed since July 1998, as for staying positive I may not be able to give much advise there, at times I feel so alone it really gets me down. I have been really lucky so far after reading some of the problems other UC patients post on these forums. I guess that is one way I deal, just reading about other people and realizing I'm not that bad yet.

 Reply posted for mckinndn.

Thanks.  It is nice to be able to read others experiences and hear their thoughts.  It definately makes you feel less alone in what you are going through.  I will look into a local support group.  That might help me find someone that I can talk to during rough times.  I think I would rather try that than be put on another medication at this point.  But, if it comes to it, I won't hesitate to talk to my specialist about that. 

Good luck on your end also.  I am glad you are doing better and hope that things continue to improve.

I really appreciate your thoughts!

 Reply posted for rebeccaou.

You will be okay and everything will work out. I am sorry that you have had to suffer so long and hopefully since you have a different diagnosis now they can find out what is needed to treat you. I know I have gotten very down about this, I was diagnosed  Jan 09 with UC, and I actually started Zoloft. I feel better with it and I know drugs are not for everyone but it helped me get through the rough times. Also you should look into a support group. I come on this sight all the time and read others stories and it also helps me.

I hope you feel better soon!!