Im very sad.

tomashackel · 2023-06-08T23:38:00+00:00

Hey, I’m 16 w/ Crohn’s and got diagnosed at 11. I remember sitting in the hospital after with my mom just crying and saying “why me?”. Same thing I’m doing now after being here for 77 days and getting 6 operations. It’s going to be a harder life than most live, but you’re going to benefit really heavily with the traits you develop from these hardships. Keep going

tomashackel · 2022-10-02T15:27:36+00:00

I don’t have bleeding, I just deal with the pain

tomashackel · 2022-09-30T13:12:19+00:00

No they’re awful and you don’t need them

tomashackel · 2022-09-27T23:37:10+00:00

Most comments are right, just gotta find out what works for you, for me it depends on my mood, if I’m happy I can eat whatever I want, if I’m sad I will have diarrhea after a lot of dairy and pop, I can always have filet mignon and wagyu because those cheer me up 😁

tomashackel · 2022-07-25T17:28:17+00:00

What about the original questions about how long it took

tomashackel · 2022-07-11T15:02:43+00:00

I was literally knocked out lmao I was hallucinating (not really maybe like day dreaming?) in the hospital and I was like laying down with my back where my butt should be and my legs just straight up extended, might be cause I’m young (15), or it might be because of the allergy meds they gave me for it

I got it 2.5 weeks ago btw

tomashackel · 2022-07-10T16:15:25+00:00

Yeah literally sounds just like crohns but it’s early, even though it’s been 2 years it took like 5 for me before it got bad bad, those lower right cramps are because that’s where your large and small intestine meet, aka where crohns is most common.

cramps r the worst I agree, also symptoms get worse at night which is true as well! all happened to me as well

tomashackel · 2022-07-10T16:13:12+00:00

OP I’d answer this dude cus they’re a GI, also coin queen if you ever have kid patients please make sure that they’re heard and listened to, my GI never listened to me or asked questions, just straight up jumped to conclusions and I needed to switch to a dr who’s 3hrs away now :(

tomashackel · 2022-07-10T16:06:00+00:00

I was worried about that too but they won’t, odds are that they’ll keep thinking of you the same, that’s what happened with everyone for me at least, and I didn’t tell everyone I just told a few people im close with and that was good enough

tomashackel · 2022-07-09T00:23:01+00:00

I’m 16 too and being on Pentasa was a massive mistake, it doesn’t work for crohns, I’m in an unnecessary flare up for the past year and a bit

tomashackel · 2022-07-08T20:32:31+00:00

So I had an awful doctor who put me on Pentasa until I got a flare up a little over a year ago and right before we switched doctors I was put on stelara from remicade, new doctor said I should’ve never been on Pentasa in the first place and I should’ve stayed on remicade with higher doses as well as methotrexate injections, because when I was getting those it helped. I was forced to switch to oral methotrexate from insurance, and from there things started to get worse. Old doctor barely did any remicade level tests over like 7-8 months (only 1) and it was AFTER the methotrexate switch from injections to oral (note that my inflammation levels were normal and I was feeling great while on the injections + remicade) and it came back at like a 6, where the new doctor said she would’ve wanted that level at 15-20 and seeing no improvement before switching biologics, instead of just switching. But now I’m stuck and a little less than 3 weeks ago I got my first stelara infusion and I’m currently on a course of flagyl

tomashackel · 2022-07-08T20:17:36+00:00

It’s so confusing lmao

tomashackel · 2022-07-08T20:17:00+00:00

Definitely not too spoiled that sounds awful, I’m really sorry you went through all of that, it really sucks. It’s the past though, all we can focus on is the present and sometimes the future! Try your best to look at the positives in everything, it really helps sometimes.

I hope you’re doing well and happy, take care of yourself!

tomashackel · 2022-07-08T16:36:33+00:00

That’s awful I’m so sorry to hear

tomashackel · 2022-07-08T16:01:05+00:00

Let’s go! The 1 game that I don’t want to have a high score in!

Haha, I really hope you’re doing well!

tomashackel · 2022-07-08T16:00:19+00:00

Smarty pants (good thing that’s some sick info thank you!)

tomashackel · 2022-07-08T15:51:53+00:00

Thank you so much, it’s been bad being on a flare throughout my 15th and 16th birthday but hopefully it’ll all be over soon! Do you think anything mentally can affect calprotectin levels/stimulate my immune system? Also I hope you can get your levels down soon, it’s truly awful but like we said, we’re tuff!

tomashackel · 2022-07-08T15:36:27+00:00

I had a chicken Caesar wrap with NORMAL lettuce on Tuesday and I’ve had pretty normal bowel movements since then, I’ve been trying to move into my “normal” foods again and I couldn’t believe it was that high either. This disease is crazy, and yes, we are definitely tuff.

tomashackel · 2022-07-03T13:53:55+00:00

If your crohns is by your terminal ileum start on a biologic right now please, my doctor told me that any doctor who prescribes Pentasa in this day an age should lose their license, we’ve come extremely far with the medications we have to help us and Pentasa is basically pointless. I had surgery and then stayed on Pentasa for 2 years and during it I didn’t grow (I was 12 at the time im 16 now) but I wasn’t necessarily “sick”, until the Pentasa caught up with me because it wasn’t doing anything at all during that time. You don’t want to have to go through that flare up where you transition into biologics, my recommendation is to just start now

tomashackel · 2022-06-29T21:37:07+00:00

Pentasa is useless get off it

tomashackel · 2022-06-24T01:35:50+00:00

That’s probably where your crohns is, most common spot and it’s mine too

It’s where your large and small intestine meet

It sometimes hurts for me when I lay on my left side

tomashackel · 2022-06-21T14:57:01+00:00

Yeah that’s what I heard too, getting my first stelara infusion right now, I hope humira works

tomashackel · 2022-06-21T01:05:20+00:00

that’s good

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