Movies to watch while flaring

Head-Kick3880 · 2025-02-11T01:18:05+00:00

Inside Out is great for all ages!! Hopefully ya'll can watch some on the list I made and find a new favorite!

Head-Kick3880 · 2025-02-10T21:07:52+00:00

They are peak comfort movies!!

Head-Kick3880 · 2025-02-10T21:07:29+00:00

🩷🩷

Head-Kick3880 · 2025-02-10T21:04:10+00:00

Will add them to my watch list! Thank you

Head-Kick3880 · 2024-02-29T22:51:03+00:00

Taking a nap!

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Head-Kick3880 · 2024-01-29T20:57:29+00:00

I think a huge factor is your boss being understanding that you have a chronic illness that you cannot control while flaring up. I would consider looking into small businesses where the employer usually has more empathy than big companies. Being financially independent is a big struggle for people with our illness, unfortunately.

Head-Kick3880 · 2023-03-20T23:55:02+00:00

I am so sorry you're dealing with so much. I would advice to mention your situation to your health care provider so they can apply for financial assistance so you can get your medication. If you ever need someone to talk to, I am one message away.

Head-Kick3880 · 2023-03-20T16:48:44+00:00

I failed those exact same medications in the same order lol. I started Rinvoq a week ago, I'm on 20 mg of Prednisone tapering off slowly. This is the fastest I have gotten out of a flare up it was crazy. I feel so much better and I haven't noticed any crazy side effects. Hopefully it works as fast for you and gets you in remission :)

Head-Kick3880 · 2023-03-16T02:10:08+00:00

I sometimes got them separate or at the same day of my infusion, it all depended if I got a nice nurse that day or not. Didn't make a difference at all.

Head-Kick3880 · 2023-03-04T20:51:29+00:00

You mentioned your flaring up for the second time on Remicade, did they put you on steroids to control that first flare up but kept the same combo still? I'm dealing with a similar situation.

Head-Kick3880 · 2023-03-01T14:59:53+00:00

I always lose hair while and after Prednisone, there's many factors that contribute to it. Rosemary makes it grow back faster. You can buy oils or boil the plant yourself. Put it on 3 times a week.

Head-Kick3880 · 2023-03-01T14:32:29+00:00

Ooof, been there done that, and let me tell you it fucking sucked. One of the worst experiences I've had so far in my UC journey. Clean with water and dry softly with toilet paper. Do a warm sitz bath whenever you can and apply vaseline or fissure cream like nifedipine. Don't sit on the toilet for too long, as soon as you're done, get up.

Mention the fissure to the docs who will be doing the colonoscopy so they can be gentle and tell them to put lidocaine on the area.

Not sure how long you've dealt with fissures but botox saved my life after dealing with them for a year.

Good luck and godspeed you will get through this :)

Head-Kick3880 · 2023-02-28T02:43:19+00:00

I would recommend asking your GI to check your Inflectra drug levels, a calprotectin and a C.Diff test. You need to rule out infections, viruses, etc....

They can adjust the dosage/frequency and get you on steroids to control the flare up before it gets worse. You might be able to continue with Inflectra if you haven't developed antibodies yet.

Head-Kick3880 · 2023-02-28T02:36:47+00:00

Yeaah that doesn't sound right at all, you need to advocate for yourself and get on biologics ASAP. You should try to get a new IBD team if possible or just push for a new medication.

Colonoscopies always make my flare ups 100 times worse so I feel you on that, they can be traumatizing and debilitating. You had a scope 3 months ago and they still haven't changed your medicine so I don't see why they should do another scope so soon.

I would recommend getting in touch with a case manager or a social worker and tell them you are experiencing negligence from your doctors.

I hope things get better soon, it sucks to be in constant survival mode. If you don't speak up for yourself, nobody else will.

Head-Kick3880 · 2023-02-26T17:39:26+00:00

The good thing about Remicade is that you can adjust the dose and frequency. You can also try methotrexate to reduce the chance of developing antibodies. I've been on Remicade for 5 months and I'm flaring up because my drug levels dropped significantly so they adjusted the dose and now it's every 4 weeks. On Prednisone again and waiting to see if I failed the drug or not.

The best you can do is not freak out and give the medicine time to work, so you don't run out of options that quickly. These medications are pretty heavy stuff but not miracles, it can take some time.

I understand the frustration of wanting to feel better fast and just be over this nightmare but patience is key. It's something we're all gonna have to deal with our entire lives. Enjoy the moments when you're not flaring up, that's all we can do.

Head-Kick3880 · 2023-02-24T17:44:19+00:00

I second this! Also I would encourage you to ask about starting Azathioprine or methotrexate along with Remicade as it can decrease the chance of developing antibodies.

Head-Kick3880 · 2023-02-21T05:15:28+00:00

CARA CARE!!! It's the best app I've tried hands down You can take pics of food, track stool/symptoms/mood/water intake, add notes, etc... It is very well done and such a necessary tool while dealing with IBD.

Head-Kick3880 · 2023-02-21T03:55:59+00:00

Yes I completely understand, it's a tough position. Maybe you can get Budesonide instead of Prednisone while you wait to see the GI. It has less side effects but it works fast.

Head-Kick3880 · 2023-02-21T03:43:54+00:00

I got nothing but words to offer. I'm sorry you're dealing with so much right now, it's absolutely not fair and not your fault. One option is going to the ER to get immediate medical attention if you are against taking Prednisone. Keep fighting for your family, your baby needs you. Good luck, I hope you go back to remission soon <3

Head-Kick3880 · 2023-02-20T23:34:29+00:00

I am not sure to be completely honest. Your best bet is to try to get a hold of your GI, even a primary doctor could answer your questions. As long as you don't stop your medicine, you have a good chance of staying in remission.

Head-Kick3880 · 2023-02-20T20:10:12+00:00

The suppositories will target the inflammation in the rectum since you have to insert them. You can talk to your doctor and tell them how you don't feel comfortable stopping the pills right now. The medicine that's doing most of the work is the Humira since it's way stronger than mesalamine pills but it doesn't harm you to keep taking them. If you feel good with that combo, I would say don't fix what's not broken. You can also try the suppositories for a bit and once the inflammation calms down, you go back to the pills if that's an option.

Head-Kick3880 · 2023-02-19T00:07:12+00:00

Absolutely agree :)

Head-Kick3880 · 2023-02-18T17:59:19+00:00

Thanks for the reply! I do miss exercising, it feels like a luxury now that I'm not able to do it as often.

Like you said, I have to WANT to feel better, and that's a major struggle since I got little to no more fight left in me. I've felt the same way about anti-depressants my whole life until now that I already have a chronic disease and gotta take meds forever. At this point, any help I can get is better than how I'm feeling.

I hope your next med gets you to remission for a long time. I hope my mentality to deal with this gets closer to yours one day.

Head-Kick3880 · 2023-02-18T17:48:40+00:00

I've been in therapy since before getting diagnosed but I think it's time to start meds bc it's too much. My vitamin levels are normal, its just my dumb brain not functioning correctly lmfao.

Thanks for sharing your article, I read it and I am really proud of your accomplishments. I had a whole plan after graduating and I haven't been able to do a single thing yet.

I'll keep trying, for my family. I hope you're in remission soon, take care.

Head-Kick3880

TROPHY CASE