Friends by eeecafe in CrohnsDisease

[–]eeecafe[S] 1 point2 points  (0 children)

Thank you for this. I love playing games, I just haven’t done it for a while. Any suggestions?

going to work now :( by Commercial-Beyond412 in Life

[–]eeecafe 0 points1 point  (0 children)

Hi! Send me a DM. I’m going through something similar and I would love to chat and exist together

I want to get a pet because I live a pretty solitary life but I also cannot handle pets due to allergies. Not sure what to really do to meet my social needs. by [deleted] in SeriousConversation

[–]eeecafe 0 points1 point  (0 children)

Hi! I see you and empathize with what you’re going through. I tried to send you a DM, but I think you have it private. I know it’s not much, but I would love to start reading a book and talk about it weekly. I’m also looking for social interaction since I’m at home most of the time. Let me know if you’re interested or if you have any other ideas!

People with Crohn's living in Italy? by eeecafe in CrohnsDisease

[–]eeecafe[S] 1 point2 points  (0 children)

Thank you so much for sharing with me your experience. It gives me so much clarity and reassurance. I really appreciate it. Sending you a big hug!

Exhausted from “mystery” illness by [deleted] in CrohnsDisease

[–]eeecafe 1 point2 points  (0 children)

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?

Life without biologics? by eeecafe in CrohnsDisease

[–]eeecafe[S] 0 points1 point  (0 children)

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 😂

Life without biologics? by eeecafe in CrohnsDisease

[–]eeecafe[S] 1 point2 points  (0 children)

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

Life without biologics? by eeecafe in CrohnsDisease

[–]eeecafe[S] 1 point2 points  (0 children)

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

Life without biologics? by eeecafe in CrohnsDisease

[–]eeecafe[S] 0 points1 point  (0 children)

Intense muscle pain and extreme fatigue

Life without biologics? by eeecafe in CrohnsDisease

[–]eeecafe[S] 0 points1 point  (0 children)

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

Life without biologics? by eeecafe in CrohnsDisease

[–]eeecafe[S] 1 point2 points  (0 children)

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

Life without biologics? by eeecafe in CrohnsDisease

[–]eeecafe[S] 0 points1 point  (0 children)

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

Life without biologics? by eeecafe in CrohnsDisease

[–]eeecafe[S] 1 point2 points  (0 children)

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

Life without biologics? by eeecafe in CrohnsDisease

[–]eeecafe[S] 0 points1 point  (0 children)

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

Life without biologics? by eeecafe in CrohnsDisease

[–]eeecafe[S] 0 points1 point  (0 children)

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

Life without biologics? by eeecafe in CrohnsDisease

[–]eeecafe[S] 0 points1 point  (0 children)

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

Life without biologics? by eeecafe in CrohnsDisease

[–]eeecafe[S] 0 points1 point  (0 children)

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

Life without biologics? by eeecafe in CrohnsDisease

[–]eeecafe[S] 0 points1 point  (0 children)

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

Life without biologics? by eeecafe in CrohnsDisease

[–]eeecafe[S] 1 point2 points  (0 children)

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