WTH, Crohns?

[TwinkleToes]

Hey All -

So, I was diagnosed back in January of 2011 with Crohn's primarily in the anal/rectal region. I was working out constantly, taking care of myself, and eating well. So, I my Doctor never put me on meds because he said it was mild enough to where I didn't need them.

Fast forward to May of 2012. I recently moved into a new apartment, have been given new responsibilities at work, and have been under more stress. I took a vacation with my family, but for some reason, it just didn't feel like a vacation. I've had to call out from work three times in the past three months due to my Crohn's flaring, and while i'm still trying to keep it under control with diet and exercise, it just hasn't been as easy. In addition to that, i'm feeling like a burden at work, and I've been using my sick time to cover my sick days. I want to apply for FMLA, but to my knowledge you have to take an actual leave of absence, and it's not like you can use the FMLA time to cover your sick days.

Last, i'm scared, because I am going to see my GI doc in two weeks, and I am worried that he will want to put me on medications. I just hear so many horror stories about the medications making people feel worse instead of better.

So, needless to say, I feel like poo (no pun intended). Every time I think that i'm getting a step ahead, I fall behind and get sick again. Any suggestions or words of wisdom from others out there?

 

[SdN]

Twinkle I'm sorry to hear you've been having such a rough time. I was diagnosed back in 2009 and I'd be happy to share any of my experiences with you if needed. That said, Crohn's doesn't typically get better on its own and you more often than not need some sort of medication to keep it under control. In my experience short term solutions include prednisone and long term solutions include remicade, humira, pentasa and a host of other options. If your Crohn's is not under control I'd recommend you talk to your doctor and see what options you have. Please keep us updated on how things are going.

 

[TwinkleToes]

Hi SdN,

Yeah, I had to take prednisone this year for when I had Bronchitis, and needless to say I would love to not have to go on it ever again. I would get night sweats, halluncinations, massive food cravings, and other unappealing side effects. I'm hoping that I can still manage for a little while without needing medicine, but we'll see. My appt is scheduled for August 7.

 

[Jennifer]

Hi TwinkleToes!

Not all meds will give such horrible side effects. I know Prednisone is the worst drug I've ever taken but have you tried Entocort instead? Its also a steroid but with less side effects (I don't notice any actually). It takes a little longer to work than Prednisone but can work just as well.

I also never had any side effects from 6MP or Asacol. Sure all drugs have a list of common side effects but that doesn't mean you will get all of them if any at all. Diet and exercise can only go so far with some people unfortunately. Hope you find something that works for you.

Keep us posted on your appointment!

 

[carolhew]

Twinkle toes, I am in the process of applying for intermittent FMLA to cover those days I can't make it to work. I just got the paperwork today, there is a section how many days needed per week/month needed. Now to see if it gets approved!

I have taken meds since my diagnosis and prednisone has to have the worst, I hope to never take it again! Unfortunately entocort didn't work for me. Now I take Humira and Pentasa and not too sure how well they are working. I see the GI Monday and hope to avoid the prednisone.

Good luck, just wanted to let you know about the intermittent FMLA.

 

[TwinkleToes]

Carol - Thank you so much for your post. I applied at work for Intermittent FMLA. It's not paid leave; however, it's nice to know my job would be covered if anything ever happened.

I went to go see my surgeon that dx'd me with Crohn's this past Tuesday, and he said that he actually thinks I might be having gallbladder issues. I'm going in on Tuesday for an Ultrasound and a HIDA scan. So, we'll see what comes from that - but it would explain so much. It just didn't make sense that my Crohn's would be flaring so much after a year and 1/2 of no issues. He did refer me to a GI Doctor here that is now seeing patients. I told him I would like to try everything except medication, and he said unfortunately with the symptoms I might be having (and the fistulas I have) that I may have to go on meds. So, we'll see what happens.

Thanks again everyone for the support! It's so nice to have all of you here.

 

[jbug86]

Hi TwinleToes, I realize I'm stumbling on this thread pretty long after you posted. Just wondering how your application for intermittent FMLA went? I have the same sort of issues (mainly affecting the rectal region) and sitting for 8 hours a day is impossible during flare-ups, so I'm starting my FMLA application this week. Any advice? I hope your doctor was able to get your pain under control!

 

[TwinkleToes]

Hi JBug! Sorry for the delay in response. Yes, things went fine with my FMLA application and I am now covered for when I have to leave or be out because of my Crohn's.

If you have any questions please let me know! The process was simple for me - just had to get proof from my doctor, and submitted the information to our FMLA people. Other than that, that was it. Good luck!