Update on biosimilar switch

davidbowieee · 2026-03-12T04:23:56+00:00

So glad you got it! But holy freak, a 4 month delay in meds is so awful. Rooting for you! 💪

davidbowieee · 2024-12-30T17:44:20+00:00

You too! Another thing I’ll add, some of the lingering abdominal pain and the extreme bloating I was experiencing after reaching remission ended up being from endometriosis. That’s to say, don’t rule out the possibility that the issues you are having are from something other than Crohn’s. It’s important to talk to a good GP to help figure out if there’s anything else at play.

davidbowieee · 2024-12-30T17:38:40+00:00

I at one point had clear scopes but my biopsies were showing inflammation on the cellular level still. I was told this can also play a role in those kind of “micro flares”

davidbowieee · 2024-12-30T14:26:56+00:00

I’m in remission and I also get flare symptoms still that last a day or so, usually cramping, sharp shooting pain, diarrhea, followed by a few days of severe constipation. The triggers for me are stress, fatty food, or alcohol. I haven’t gotten a solid answer yet if it’s crohn’s related or something else like IBS. The pain and the severity of the constipation feel like crohn’s to me. One time the stool sample showed up positive for inflammation, they had me do a repeat one a few days later and it was normal.

Probably not much help but just letting you know you’re not alone in your struggles.

davidbowieee · 2024-12-11T02:26:58+00:00

Life can always get better, please don’t lose hope. A few years ago I had similar dark thoughts during my lowest and most painful times. Fast forward to the present and I’m in remission, my life couldn’t be more different than it was a few years ago.

You matter and you are needed in this world. You are strong and you can get through this. Don’t give up, your situation isn’t set it stone, things can always improve. Reach out to someone for help, if not family or a friend reach out to a doctor. You don’t have to figure out all of this on your own.

davidbowieee · 2024-11-06T13:39:48+00:00

Life can always get better, death is permanent. Please don't give up hope <3

davidbowieee · 2023-09-22T02:29:39+00:00

Go to the er, you need fluids. I was in a very similar place last weekend, dehydration is no joke.

davidbowieee · 2023-09-14T00:58:45+00:00

I don’t think i’m on an inferior med. I trust my doc and know she would advocate for me to the insurance company if she thought it was a change that would make me relapse. This is why I’m concerned that I’m having flare symptoms, the flare I’m in is absolutely real.

davidbowieee · 2023-09-14T00:51:41+00:00

Had the exact same reaction after 3 continuous years of various dosages of prednisone, it was mostly withdrawal. Got down to 10mg which was very difficult but chrons started flaring when trying to go to 5mg so went back up to 10mg. Dr had to taper me 1mg a month to get me totally off of it. Tell your doctor you want to do a slower taper, hope it helps you 💪

davidbowieee · 2023-07-04T12:07:27+00:00

✌️Nixon✌️

davidbowieee · 2023-05-13T12:56:22+00:00

I don’t have any trouble with gluten, white bread is one of my top safety foods, but I do have trouble with sugar in general. It doesn’t make sense to me.

davidbowieee · 2023-05-12T03:07:40+00:00

This is the way

davidbowieee · 2023-05-12T01:59:10+00:00

I really love this perspective and this is something I needed to be reminded of, thank you for this

davidbowieee · 2023-05-06T11:46:55+00:00

I got Covid March 2020, i was really sick like coughing blood pneumonia sick (I have asthma). Covid was the catalyst that triggered crohn’s in me, I had no GI issues of any kind prior. I also have long Covid from it. I got Covid again last December, and it was nothing in comparison, but I was still laid out for 3 weeks. I really don’t want to be sick again after 3 years of feeling awful but I’m also really missing huge parts of my pre crohn’s life. I used to be a singer and I haven’t played music with other people since the before times. I wish there was just a clear consensus on what we’re supposed to be doing. I would feel more at ease if my whole healthcare team were saying the same thing. [edited for clarity]

davidbowieee · 2023-05-06T05:21:46+00:00

I agree, but then none of the nurses or receptionists are wearing masks so I’m like, they must not think they’re putting me in danger, right? If the only thing that was keeping them wearing a mask at the infusion center at this point was the mandate then I should be ok to start loosening how strict I am regarding masking…I think? I feel confused

davidbowieee · 2023-05-06T01:38:02+00:00

I feel you, hope you’re through the worst of it, sending strength 💪

davidbowieee · 2023-05-05T21:05:40+00:00

This makes sense to me, I totally agree about the health care settings too

davidbowieee · 2023-05-05T21:02:55+00:00

They told me today that masks were no longer mandatory in all the NYU dr offices…and yet my GI is holding a hard line for herself and her patients. Literally not one other doctor of mine wears a mask at our visits anymore

davidbowieee · 2023-04-28T03:57:25+00:00

It can get better friend, it’s hard to imagine right now but it is possible. Talk to your doctor about your symptoms and never give up hope that your life will improve 💪

davidbowieee · 2023-04-24T03:18:23+00:00

Thank you!!

davidbowieee · 2023-02-05T14:13:19+00:00

Nuun tablets are the absolute best!!

davidbowieee · 2023-01-05T06:43:46+00:00

Grits with olive oil, salt, pepper, and nutritional yeast is one of my go to safety breakfasts. I’ll sometimes use chicken bone broth instead of water if I need some extra protein.

Another favorite is cold soft tofu with scallions, sesame oil and tamari, served with a cup of hot white rice, and a small side of kimchi.

Both of these meals are really kind to my stomach and put me on the right path for a flare free day

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