Diagnosed in 2012, but just had first huge flare

[Olygal1215]

I was diagnosed in late 2012, although I obviously had it longer than that and just didn't know it. As soon as I got the diagnosis I was very proactive about caring for myself. I saw a nutritionist who works with Crohn's patients and set up a specialized diet plan, took my meds religiously, found a great probiotic, and stayed active. And for most of this year, other than a few minor hiccups, I felt pretty good. I wasn't going to let Crohn's get me down or stop me from having a life.

That all changed Christmas Day this year. I woke up Christmas morning and immediately started vomiting, then came the non stop BMs. For a while I was on the toilet with a bowl in my lap with it coming out both ends. It felt like my insides were wrenching out of me. After a few hours of that, when it finally stopped the pain was horrible, it was as if my whole body was cramping up. I was taken into urgent care and put on IV fluids and given prednisone. That was my Christmas. Finally, almost a week later I'm almost back to "normal."

What I'm dealing with now is what feels like PTSD. I thought I had it under control, I though I could live with Crohn's no problem, I wasn't going to let it stop me. But after that hideous flare, which I was lucky enough to have experienced until now, I'm afraid to eat or do much of anything. I just got a new job, a job I had wanted for a while and is so much better than the job I've had for the last few years. But I haven't even started that new job yet, and I'm afraid I'll have another nasty flare and not have the chance to prove to them that they're choice to hire me was a good choice. I keep thinking about it and every time I feel a pain or a cramp I start to panic. I'm not as strong and capable of dealing with this as I thought I was.

 

[ryansbronco]

Welcome to club prednisone. I think most of us has had to use the bowl of shame at lest a few times in our life. Even on my best days I still have a bit of pain. It took a while to find my happy drug. Remicade seems to be working the best for me. Has your gastro talked to you about any drugs? When ever you need to vent or have questions someone is usually here

 

[Olygal1215]

Welcome to club prednisone. I think most of us has had to use the bowl of shame at lest a few times in our life. Even on my best days I still have a bit of pain. It took a while to find my happy drug. Remicade seems to be working the best for me. Has your gastro talked to you about any drugs? When ever you need to vent or have questions someone is usually here

Thanks for your reply, I appreciate you taking the time.

As for drugs, I have been taking Pentasa since my diagnosis, 1000 mg 3x a day. Along with promenthazine as needed for the nausea. When I was diagnosed my GI doc said my Crohn's was mild to maybe moderate so she didn't think I needed anything more than those drugs. And for the first year or so after my diagnosis, I didn't have any major issues really so I thought I'd lucked out and would be just fine.

Christmas day was my very first experience with a nasty, full on flare and it scared the crap out of me (no pun intended). My GI doc is always so over booked so I don't have an appointment with her until the end of January. She may suggest a drug change then since my Crohns appears to have gotten worse or maybe something else, I don't know. I do know that I worry about taking biologics and such simply due to the price, even with insurance it's way more than I can afford. So if my GI doc reccomends that I don't know what I will do.

 

[ryansbronco]

if you go the remicade route look up remistart. It covers most of what insurance dose not. There is always a gastro on call. You can demand to talk to that person. You might have to go through the advice nurse first. In all of my ER stays only once I had my normal Gastro. Next time you in pain as you descirbed it would be worth a trip to ER. The ER will run most of the same test your Gastro would. Then the Gastro on call decides how it should go.

 

[cca2013]

I was diagnosed in late 2012, although I obviously had it longer than that and just didn't know it. As soon as I got the diagnosis I was very proactive about caring for myself. I saw a nutritionist who works with Crohn's patients and set up a specialized diet plan, took my meds religiously, found a great probiotic, and stayed active. And for most of this year, other than a few minor hiccups, I felt pretty good. I wasn't going to let Crohn's get me down or stop me from having a life.

That all changed Christmas Day this year. I woke up Christmas morning and immediately started vomiting, then came the non stop BMs. For a while I was on the toilet with a bowl in my lap with it coming out both ends. It felt like my insides were wrenching out of me. After a few hours of that, when it finally stopped the pain was horrible, it was as if my whole body was cramping up. I was taken into urgent care and put on IV fluids and given prednisone. That was my Christmas. Finally, almost a week later I'm almost back to "normal."

What I'm dealing with now is what feels like PTSD. I thought I had it under control, I though I could live with Crohn's no problem, I wasn't going to let it stop me. But after that hideous flare, which I was lucky enough to have experienced until now, I'm afraid to eat or do much of anything. I just got a new job, a job I had wanted for a while and is so much better than the job I've had for the last few years. But I haven't even started that new job yet, and I'm afraid I'll have another nasty flare and not have the chance to prove to them that they're choice to hire me was a good choice. I keep thinking about it and every time I feel a pain or a cramp I start to panic. I'm not as strong and capable of dealing with this as I thought I was.

I'm so sorry you were sick on Christmas! :ghug:

PTSD is pretty normal! I'm still going through it from my last flare. Don't let it take over though. YOu have to eat! Maybe look into the low-res diet or just keep a food journal. But you will need all the nutrients you can get! Also, look into taking Calcium, Vitamin D3 and B12. I was given that advice on here and it's worked wonders! And I know it's easier said than done, but try not to think about it too often or stress out. You could possibly make things worse. Try to watch a ton of funny movies, laugh with friends, do whatever makes you the happiest. And make sure to always keep on top of your meds. You also may want to avoid nuts and popcorn. Some can tolerate it, but better safe than sorry.

You are strong! When you heal even more and get in remission you'll look back and realize just how strong you were! Trust me! Getting out the flare is usually the hardest part! :ghug:

 

[Olygal1215]

Thank you to those who have replied here. Getting advice and support from those who know what it feels like really means a lot!

It took a while for me to finally get diagnosed because my biggest issue has always been constipation. Most people including some doctors think of diarrhea as being Crohn's, so it wasn't until I had a colonoscopy and biopsies were taken that my Crohn's was finally diagnosed. And constipation is still the main symptom for me, so while the advice is usually avoid fiber and such, I have to get more fiber. Usually I can't go for days and then one day it all just comes out, all at once. I also have bad nausea sometimes due to the constipation, but once I have a BM the nausea usually improves.

But like I said, for the most part, until Christmas Day last week, I've had it easy and Crohn's hasn't really knocked me out until now. It very well could have been that bag of popcorn I ate at the movies the night before, because the very next morning is when I got slammed with it. I guess I know now not to eat popcorn again. But ending up in urgent care and being practically disabled for almost a week is something I haven't experienced with this yet. My eyes have truly been opened to what an unforgiving disease this can be. And right now the hardest part of all this is the emotional impact and it couldn't have happend at a worse time, right before I'm about to start a great new job.

But, again, thank you so much for replying. A whole new journey with Crohn's has started for me and I'm glad to have a place to go to talk about it!

 

[anitcincin21]

Hang in their. I have been on humira for almost four years and I went three years with no symptoms at all and I lost my insurance then I applied for assistance and now I get my humira for free for the next year.
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