Diagnosed a month ago

[SaraTee]

Hi! Just wanted to start out with introducing myself and my experience with Crohn's so far. Was diagnosed with IBS and an aversion to dairy almost a year ago after some bloody D. GI did a colonoscopy and found nothing, so he merely suggested to avoid dairy and gluten and see if anything improved. Now, almost a year later and a move 3 hours away (and doctor-less in my area) I was having a month-long bout of bloody D that I believed to be stress-induced. And with the diagnoses I had been given, I wasn't too worried... Until I was laid up in bed for three days with cramping, weakness, no appetite, and a fever. I went to the ER and they ran a CT scan, tons of blood work, and rehydrated me with IV fluids. Of course they admitted me to the hospital (I was still in denial, and hoped I wouldn't have to stay overnight). I got a colonoscopy and my newly appointed GI said it was absolutely Crohn's, even without waiting for the biopsy results. I had ulcers all along my colon. They kept me for 3 more days (was there a week total) where I was given a variety of medicinal goodies: Flagyl, Calcium drip, Potassium drip, a blood transfusion, and started on Prednisone. I'm still tapering off the steroids, as well as taking iron supplements and Omeprazole for the ulcers. I've also recently added muscle relaxers because after being basically immobile for a week, I managed to pull a muscle along my left rib cage. Won't even get into how much that is bothering me, since I can't even do yoga to regain my strength.
I finally have my follow-up with this new GI tomorrow, where he will likely start me on Imuran. Of course I'm quite nervous. I've been reading nothing but Crohn's/IBD info for the past month, though sometimes I feel more confused than ever. My friends and family are trying their best to be supportive, but most don't understand the disease (and I'm not completely sure I do either, yet).
Anyways, thanks for letting me ramble on. I'm really glad I found this forum!

 

[JDTM]

Welcome, Sara! If you end up starting Imuram, definitely let us know how it goes. It sounds like you've already been through a lot, but once you get a treatment plan dialed in, you should start to see some real improvement. It's tough to understand what's going on at first, and there's a lot of information out there and it can be quite overwhelming, but try not to freak yourself out too much. (Easier said than done sometimes, I know!) Anyways, it's nice to meet you -- feel free to use this forum as a sounding board and a place to ask questions, and there's certainly TONS of information here as well.

And remember, even though your friends and family might not understand IBD firsthand, it's good that they're trying to be supportive! Let 'em know that it's appreciated.

 

[carrollco]

Welcome! You have already been through so much! There is a ton of information on this site to help you. Personally, I don't know what I would have done without it. Once you get settled and on treatment, you'll feel so much better. I did a week in hospital last year. Not fun. I hope to never see the inside of one again.

 

[Angrybird]

Hello and :welcome: to the forum. Sorry to hear about the diagnosis, I don't think it is ever easy to take in at the beginning. Just take your time having a look through the information available and never hesitate to ask questions if you are not sure on anything - that is what we are here for

I am on the Imuran (aka Azathioprine) myself for the second time and so far so good, usually the idea would be to start this whilst still on the steroids so they can still be keeping things at bay whilst it kicks in.

Fingers crossed you can be feeling better soon hun, all the best.

AB
xx

 

[David]

Hi Sara and welcome

Shoot, I've been reading everything I can about inflammatory bowel disease for quite awhile now and I still don't understand the disease, so don't feel bad about that one There is SO MUCH to learn but learning so you can advocate for yourself is very important in my opinion since, at present, this is a life-long disease.

In case you haven't seen it, we have an Imuran support forum you may want to check out.

We're here for you any time you need us. I wish you all the best

 

[Adam1971]

Hi Sara-

Thanks for sharing your story. I am at the hospital now for pretty much same reasons. Its totally overwhelming and scary, and people don't get it. Hang in there, and I will too.

 

[SaraTee]

Thank you all for the warm welcome! GI did indeed put me on Imuran, but is also drawing out my Prednisone taper. Somehow it just helps knowing what the plan is now. And I'm excited to be able to begin getting off that darn low-residue diet! I'm still intrigued to read all I can (and my parents are doing the same!) with some new insight every day.

Adam, sorry to hear you're in a similar position. Good luck and be strong! Hopefully the things they are doing will make you feel better very soon.