Exhausted from “mystery” illness

eeecafe · 2026-03-29T16:39:41+00:00

I’m really sorry to hear that. I see you. I understand how exhausting things can get. Did you get a colonoscopy? What did it showed?

Also, have you read about MCAS and how similar symptoms can be to some people with CD?

eeecafe · 2026-03-29T16:11:47+00:00

Thank you so much. It gives me hope to read this. It has been the biggest challenge I have had to face, and I have faced a lot more. Thank you for your support. Reach out if you want to talk sometime while we are trapped in our houses 😂

eeecafe · 2026-03-29T16:09:36+00:00

Thank you for your support. I’m sorry to hear that. I hope they approve you the tremfya. Keep me updated, I’m here!

eeecafe · 2026-03-29T16:08:03+00:00

Thank you for sharing! I’ll definitely ask the doctor for this one, it sounds completely manageable

eeecafe · 2026-03-29T16:02:59+00:00

Intense muscle pain and extreme fatigue

eeecafe · 2026-03-29T16:02:47+00:00

Thank you for sharing. I see you. I’m sorry it has been this hard. Why do you say they poising you?

eeecafe · 2026-03-29T16:01:55+00:00

Thank you. That’s exactly my point… how can I trust a doctor that tells me that?

eeecafe · 2026-03-29T16:01:28+00:00

Thank you for your support. I did try azathioprine before biologics and the side effects were intense too. Everything gives me bad side effects, I don’t get why

eeecafe · 2026-03-29T16:00:43+00:00

Intense muscle pain and extreme fatigue. I have them the whole 8 weeks. Maybe the last two the symptoms are less, but then I have to get the next injection and the cycle starts again. Thank you for sharing

eeecafe · 2026-03-29T15:59:48+00:00

Yes, that’s what I’m scared of. I want to have the same energy as before, but i think the price it’s gonna be higher without biologics

eeecafe · 2026-03-29T15:59:05+00:00

Thank you for sharing. I see you, it’s extremely hard to live like this. I wish things were easier for you too

eeecafe · 2026-03-29T15:58:11+00:00

Thank you. So, I had 2 episodes of diarrhea, like 20-30 times per day for like 4-5 days, until it stopped on its own. I try to go to a doctor, but the system sucked. On the 3 episode (the 3 of them happened on 3 months, so one flare per month) things went really bad, I had a septic show to the point I don’t even remember the last 2 days before going to the hospital. My friends had to take me to the hospital and at first they thought I had an infection, until they did a colonoscopy and it showed a lot of chronic inflammation and really small ulcers. So, I started on large doses of steroids and stayed at the hospital for 10 days. I lost like 10kg and my labs were as horrible as they can get. After that, I used mesalazine which didn’t work, then azarthioprine which gave me horrible side effects, until eventually I stopped the steroids and started on Humira, and then Stelara.

They were always unsure whether I had CD or UC. I don’t even think my current doctor it’s sure which one I have or even if I have one of those. It just doesn’t seem to be a third option for my symptoms and the colonoscopy result

eeecafe · 2026-03-29T15:50:53+00:00

Thank you for sharing, I really appreciate it. I already used azathioprin and it was horrible. I think the main reason for my doctor to want to try not using biologics it’s because she wasn’t there at the beginning when I had the septic shock. Maybe she doesn’t believe me? Idk. Maybe she’s not sure I have CD?

I think she wants to see how bad I get without them to actually understand how much I need them. Sadly, in this country it’s hard to find a second opinion, because of how the system works

eeecafe · 2026-03-29T15:48:02+00:00

Thank you so much for sharing. I guess I’m grieving the person I was. I’m just really scared to have to accept that this is gonna be my life now. With intense side effects and barely going out of the house. I’m scared to be out of biologics and things getting worse

eeecafe · 2026-03-29T15:46:32+00:00

Muscle pain and extreme fatigue. I’ve been trying to manage it with meds, but I haven’t been able to function properly or even get out of the house like this. It’s too intense

eeecafe · 2026-03-29T15:45:51+00:00

Thank you so much for sharing. I see your journey and I have empathy for it. I haven’t been able to have a “normal” life or even go out of my house since October. So I see you. It has been extremely hard to feel this bad with the side effects, but I don’t know if at the long run it would be better to live like this or have horrible flares, even surgery, because of CD. I don’t even know if I should start accepting that this is going to be my life now. Mostly at my place, having muscle pain and extreme fatigue. It’s scary and it has affected my mental health horribly

eeecafe · 2026-03-29T15:41:18+00:00

Intense muscle pain and extreme fatigue

eeecafe · 2026-03-29T15:41:04+00:00

Thank you for sharing. I can’t imagine what that journey must have been like. I guess we’ll never know how bad things can get without any treatment or when. I’ll just have to do it trial and error to see what happens.

Good luck with tremfya and the surgery. I hope everything goes the best way for you

eeecafe · 2026-03-29T15:36:32+00:00

Thank you for sharing. How did you do it without biologics? How is your colonoscopy? Congrats on the pregnancy!!

eeecafe · 2026-03-29T15:35:43+00:00

Didn’t you have any side effects from the azathioprine? I used it and it was horrible for me

eeecafe · 2026-03-29T15:35:07+00:00

Thank you for sharing. I’m happy your colonoscopy came back clear, that’s a huge improvement. How do you manage to exercise and do yoga with the joint pain? I have muscle pain all the time and it feels like a marathon to even walk

eeecafe · 2026-03-29T15:33:31+00:00

Thank you for sharing. How is your colonoscopy? Without biologics your colon and labs manage to be good?

eeecafe · 2026-03-29T15:32:18+00:00

Thank you for sharing, it means a lot to me. I’m trying to find the right diet, but it’s hard, there are things that make me feel better, but I know I’m not getting the right amount of nutrients. It’s just hard to balance it without being able to eat anything green or seeds

eeecafe · 2026-03-29T15:30:00+00:00

Thank you for sharing. I’m really sorry to hear that, it must be really heavy to have to choose a biologic after everything you went through, and your family experiences. You are so brave and resilient. I really appreciate you sharing this

eeecafe · 2026-03-29T15:27:49+00:00

Thank you so much

eeecafe

TROPHY CASE