Newlywed-Crohn's 1 year

[Rachel]

Hi everyone,

My husband encouraged me to join a Crohn's forum and get involved with communicating with others like me. So, here I am ready to connect!

I was diagnosed with Crohn's about a year ago in September. I was 24 years old. I had been living with the disease for many years...sometimes I look back and wonder how the heck I was doing that. It had become my "normal." (as if normal is going to the bathroom 10-20 times a day ha!) I really became concerned and decided to see a doctor when I started bleeding a lot and physically could not leave the restroom for hours at a time.

So, this past year has been a whirlwind. I was immediately put on 40 mg of prednisone (hate that drug), pentasa, entocort, a probiotic, many vitamins, and xanax. I felt very overwhelmed by all the drugs. I didn't feel educated and I felt like my body was experiencing things that was turning me into a crazy person. I blame it all on the prednisone!

It took about a good 4 months for the pentasa and entocort to really start making a difference. From September to December 2011, I just felt very sick. On top of being flared up, I was extremely tired, emotional, bloated, puffy and crazy feeling from the prednisone.

In November, my boyfriend proposed and wedding planning began! Honestly, it was the worst time to start planning a wedding. I was so freaking tired. And when I bought my wedding dress, I was so puffy and moon faced! It was not the most fun time.

Thankfully, I got through the holidays. And by February, I was feeling much better. I would have symptoms every couple weeks-which was the best I had felt in years! I was able to plan my wedding and happily be married on June 15! No flares on the wedding day. I made it down the aisle with out having to go to the bathroom and enjoyed the whole day! That was my worst fear for my wedding day. It ended up being perfect.

A few weeks after we returned from our honeymoon, I went into a flare. So, currently I am in a flare and have been since mid-July 2012. It sucks. My doctor says my drugs just aren't working and never really were. I am in the process of getting Cimzia approved and should start my first injection very soon.

Not sure what to expect with Cimzia. Does anyone have any adivce on how long it will take to notice results?

Currently, I am back on a small dosage of prednisone. Again, I am very very tired, headaches, rapid heartbeat (is this normal??), puffy feeling in my gut, and still having symptoms every few days-but not as often as when the flare first started.

Also, I started a blog to help me journey through this disease and what it is like to live with it from day to day. You never know what to expect and everyone is so different! Everyone has such a different experience with Crohn's.

Looking forward to communicating with you all!!

Rachel

 

[jami]

When do you start the cimzia? I just got the starter dose in the mail today, but I can not start it until Sept. 4th...I think that is the date, need to call the doctors office to double check, but because I was on humira, and had just dont a shot last week, I cant start it for a little bit. Ask the doctors office for the cimpay card, it paid the rest of what my insurance didnt pay...loved that one!!! I cant help with what to expect, I posted earlier about it, but no responses on it.

Prednisone is not one of my favorite meds either, but it does help...I was so bad at first when they diagnosed me that I had to have it put in me through an IV, was on it for nearly a year til they finally got me tapered off.

Good luck on the cimzia!!

 

[Rachel]

Well, I'm not sure when I start. It took nearly 3 weeks to get approve. Then yesterday, I finally got a call from the drug company tell me how much it will cost and that I should be hearing from a nurse soon to schedule a time to teach me how to inject it. They also said my pharmacy should be calling soon to schedule a time to deliver it since it has to be refrigerated. No calls yet! I want to start soon, because I don't want to be on prednisone too long. Let me know how it goes when you start! I'm anxious to get mine going. My doctor told me it could take up to 3 months to really see results. Geez.

Thanks for the reply!

 

[Angrybird]

Hello Rachel and welcome to the forum

I am sorry to hear you are struggling to get the tum settled, fingers crossed the Cimzia will do the trick for you. We do have a sub forum dedicated to this if you wanted to find out more about it and chat with others who are currently on it: http://www.crohnsforum.com/forumdisplay.php?f=87.

With regards to the Pred is your GI aware that you are feeling so bad on it and that you still have syimptoms? If not I would get onto the about this. Also have you been given any type of calcium supplement to take whilst on this?

Finally I would also ask your doc about having a full vitamin panel check done, it is common for people with crohn's to have deficiences in this area and a low B12 for example can cause fatigue among other things.

I hope you can be feeling better soon.

AB
xx

 

[David]

Hi Rachel and welcome to the community!

In addition to what was said above, do you know if your magnesium levels have been tested? Magnesium deficiency is pretty common with people with Crohn's, especially when in a flare and can lead to that rapid heart beat you mention.

I'm a fan of juicing. There are a variety of benefits and one is a big nutrient kick which Crohnies invariably need from all those vegetables. It may be something worth looking into.

Again, welcome!