Newly diagnosed and have so many questions

Hey Everyone!
I'm not sure where to start, as I have so many questions to ask! Well, I guess I'll start with my story: after having severe abdominal pain every time I ate and the good ol' "constipation/diarrhea war of 2014", I went to the hospital looking for answers. While they did every test under the sun (bless their hearts), the only thing that worked were the meds they started me on for ibd/crohns. While my GI has not confirmed this diagnosis (I have a f/u on the 24th), I left the hospital with this diagnosis and have so many questions! I have been finding very limited information on successful strategies!

1) how do I eat without feeling like a gremlin isn't going to rip out of me?

2) how to I gain my stamina back (I am at this point only able to work part-time)?

3) While I know each individual is different, what are some "tools" you folks use that work for you?

I appreciate any and all information! I'm just so tired of being left to think living again is impossible, and would love to hear any kinds of possibilities

1) That generally comes with time! As you work your way out of a flare (usually with medication), you will eventually have an easier time eating, and you'll start to figure out your "trigger" food that your stomach disagrees with.

2) That also comes with time! Once you start getting treated, you'll start to get better. I'm in remission, and I feel totally normal now. So it's possible!

3) My "tools" would be medication, I guess! I'm just taking Humira these days, though. Otherwise I also try to keep my motivation up by signing up for habitrpg, and giving myself goals that contribute to self-maintenance.

Is it okay to ask if you're on any medications yet and what they are? Or are you waiting for an official diagnosis first?

Thank you so much for your response!!!!
I am an open book and will gladly share. While I was sent home from the hospital with about 15 or 16 different medications (prednisone, bentyl, reglin, prevacid, etc), I am waiting to hear more from my GI regarding pain management via meds. In the meantime, I have been working with a dietician to uncover what foods are safe to eat, and have been receiving acupuncture twice a week (which seems to help a bit). I just seem to get tired so fast, and am still afraid to eat anything without being in dire pain.

Yeah, the tiredness is an unfortunate symptom but it pops up whenever you're in a flare. Not to mention that Crohn's is basically your immune system working too well and trying to attack your colon/respective affected area (since it's recognizing it as foreign) so you're a bit compromised!

Prednisone works well for calming down flares initially, and then I'm sure your GI will probably put you on some kind of maintenance medication. They usually start with what's called a 5-ASA, like Pentasa, which is an anti-inflammatory to treat the inflammation in your system.

In my case, because my illness is more severe, I was put on Imuran (6mp is similar to this, and you might hear people mention it on this forum as well), which is an immunomodulator. It changes how your immune system functions (temporarily) and prevents your immune system from attacking you and creating that inflammation in the first place. You could always bring that up to your GI if you're curious about it.

Past that, there's biologics that are more heavy-duty, but they might bring that up later on.

If you have any more questions or want me to go into any more detail about things, just ask!

Funny you should mention feeling like something is going to rip out of you. The man who wrote Alien had Crohn's Disease and credited his illness for inspiring the chestburster scene. Source

Maybe the tiredness is from vitamin deficiency? You could go to your GP and ask them to check your B12 and/or D levels. If your B12 is low you can get a monthly injection and they have supplements for D.

Orchid that is interesting about the creator of Aliens.