26 year old female, newly diagnosed

[fee_fi_fo_feena]

I have had intestinal issues for a long time, but back in May when I started the ball in motion for a cross country move, my symptoms started getting worse. Fevers, chills, sweats, joint aches, sudden change in vision (I got new glasses maybe 8 months ago and I realized they were already too weak), irregular periods, nausea, and I could go on and on and on. It felt like extreme exhaustion was killing me; I would get home from work at 530 and be asleep by 715 and sleep almost 12 hours and still be tired. I ended up in the ER one day for dehydration about 3 weeks ago, while I waited for my colonoscopy to be scheduled.

I had a positive prometheus test for Crohn's, and yesterday I had my colonoscopy which showed ulceration and stenosis from scarring in the ileum. The doctor sent off biopsies to be as sure as possible, but said at this point we are looking at Crohn's and when the biopsies are back we will start treatment. My dad has Crohn's, so I knew it was likely given all the symptoms but I still feel kind of ... lost. I forget what not being exhausted and feeling sick all the time feels like and I am scared to hope for anything better, yet I want something better. My family is far away and even though it was expected to hear this, I feel scared and alone :/

 

[rdehof]

I am sorry to hear you are scared and alone and even though it may sound cliche, try so keep your hopes up. (Easier said than done believe me I know!)

Remember that with your diagnosis (and upcoming biopsy results) comes treatment options. Hopefully your GI can get a plan in place to get you some relief soon.

Being scared, feeling down, and wondering if there is anything better happens to the best of us, but you can't let that consume you.

Even if your family and loved ones are far away there are usually local resources and groups available to talk to, and forums like this are here to help as well if you need to talk or vent

 

[fee_fi_fo_feena]

I am sorry to hear you are scared and alone and even though it may sound cliche, try so keep your hopes up. (Easier said than done believe me I know!)

Remember that with your diagnosis (and upcoming biopsy results) comes treatment options. Hopefully your GI can get a plan in place to get you some relief soon.

Being scared, feeling down, and wondering if there is anything better happens to the best of us, but you can't let that consume you.

Even if your family and loved ones are far away there are usually local resources and groups available to talk to, and forums like this are here to help as well if you need to talk or vent

My doctor called with the biopsy results a few hours ago (so much for a week, I guess; not that I am not grateful) and the Crohn's diagnosis is definitive now. I start on Asacol tomorrow and follow up in office in 3-4 weeks. He is trying to avoid prednisone for now, which is okay with me because while I like the energy I get from prednisone, I get bad anxiety and insomnia and other things I'd rather not deal with right now.

I am not letting myself get too down, I have just been so sick lately it is a bit of a struggle. My family is supportive even though they are far away, even though my dad is kind of blaming himself because he is the genetic link despite logically knowing that it's no one's fault and nothing anyone can change. :ybatty:

I went into my first doctor's appointment pretty much knowing this was what the diagnosis was going to be (all the symptoms, family history, etc.) so I thought I was prepared to hear it. I guess no one ever really is.

 

[lgpcarter]

No, I don't you are ever prepared. When I first sought treatment for my symptoms, my doctor was pretty sure it was Crohn's. I still held out hope for a bug or something else right up until the end. I was 20 at the time and in university far away from my friends and family.

I hope the Asacol helps and you get some relief soon. I understand the desire to avoid Prednisone. I am almost a year into a flare and still not wanting to go down that road.

 

[hingrum]

I am also 26 and I am also diagnosed with Crohn's Disease. There is no history in my family, but I have been suffering from symptoms since I was 13. There is no way to be prepared for the diagnosis, even if a family member already has Crohn's because the disease is so different for everyone. Even though I have had Crohn's for half of my life, I got news back after a recent colonoscopy that mine had spread and is no longer confined to the ileum. So even though I have had Crohn's a long time, that news still stung. I hope that you will find some relief with the drugs your doctor has prescribed.