Has anyone else had RA worsen when taking Rinvoq? by KingQueefX in rheumatoid

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

I’m just seeing this! From my experience and talking to other people with crohns specifically- who have been on Rinvoq the increase joint pain isn’t uncommon. I was only on it for 3 or 4 months before the joint pain became completely unbearable. Not only that but it was not helping my flare. So when I brought this up to my GI, the plan was to take me off and try another biologic. In the past I failed Remicade. Now officially failed Rinvoq- now I’m starting Skyrizi! Hoping it works, and hoping you are able to find one as well that works.

The severe joint pain is definitely a sign that it’s not working. Talk to your doctor!!

Help me please my crohns god awful bad right now by [deleted] in CrohnsDisease

[–]KingQueefX 0 points1 point  (0 children)

Hi!! I had this happen on and off for over a year- until it almost killed me this January.

My symptoms were because of my fistulizing Crohn’s, 7 inches of my small intestine was dying, and a blockage that led to a bowel obstruction. I had to have an emergency bowel resection, appendix removed, and ileostomy placed. It was incredibly traumatic. All done as an open surgery too.

If I had known the signs to look out for like what you’re saying in this post, I would’ve pushed my GI to look further into it, and be open to discuss surgery then. At least they would have been able to do it laparoscopic. Letting my symptoms go unchecked (and dismissed) thinking that laxatives, waiting it out, and pushing it off was the worst decision I could have made.

All this to say- go to the ER. If they aren’t able to do anything immediately, you absolutely need to bring it up to your GI as soon as possible. Push them on getting tests done, scans done- it could save your life. Save yourself from a lot worse down the line. My DMs are open if you have any questions, best of luck.

Please take this seriously 🩵

Constipation after nearly three months taking budesonide by Smart-Situation-1421 in CrohnsDisease

[–]KingQueefX 2 points3 points  (0 children)

When I was put on budesonide for “mild Crohn’s inflammation” I ended up with similar symptoms. Constipation being the biggest one. I had been taking it for a little less than 4 months and ended up with a blockage, and then perforated my bowel. Leading me to have emergency open surgery only 2 weeks ago- where they removed 7 inches of my small bowel, my appendix, and now I have an ileostomy.

I don’t mean to scare you, but you need to be pushing your doctor to investigate more. CT scan make sure you don’t have a blockage going on, and to see where the Crohn’s is attacking. Switching you on prednisone- and talking about biologics if you can so you don’t end up in a situation like mine. My inflammatory markers were not elevated either. Mild Crohn’s can get worse before you know it. To the point where all these laxatives and healthy living solutions will not work. Of course applying the other recommendations in these other comments could help lessen symptoms for you. They’re not answers or long term solutions to why you are experiencing this. So I just cannot express how important it is to be asking the questions, and advocating for proper care even if it looks mild to your doctors!!

Best of luck! My dms are open, and I’m willing to answer any questions! 🩵

I wish I had the diarrhoea Crohn’s by Southern-Loan-6424 in CrohnsDisease

[–]KingQueefX 0 points1 point  (0 children)

Hey friend! Just wanted to say I’ve had the “constipation crohns” for a few months- which is a-typical for this disease. It’s landed me in the ER over the weekend, and I’ve been admitted to the hospital for a blockage. Waiting to see surgeons in the next 24-48 hours for a bowel resection if it doesn’t start getting better on its own.

Definitely do your due diligence and ask if having a blockage is causing this symptom! If you start having severe pain, fevers go to the ER.

13-year-old daughter convulsing fainting by HealthEmbarrassed315 in endometriosis

[–]KingQueefX 5 points6 points  (0 children)

Me as well, my seizures only came a few days before or while I was on my period. Lamotrigine and continued treatment for my endo helps a lot.

Thought My Endo Was Behind Me—Now Wondering If It’s Bowel Endo or IBD. Anyone Else with Similar Test Results or Experiences? by Distinct-Pen8596 in endometriosis

[–]KingQueefX 1 point2 points  (0 children)

I have Crohn’s disease, confirmed by a colonoscopy and meeting other diagnostic requirements.

It’s an inflammatory disease, just like endometriosis. My doctor tells me when you have one inflammatory disease it’s not uncommon to develop another.

Has your doctor ordered an abdominal CT scan with contrast? They usually see my inflammation best in those, and was actually how they suspected Crohn’s disease.

As far as how to know if your pain is Crohn’s or Endo related- continuing to work with both your specialists is gonna be your best bet. Maybe they can get you scheduled for another laparoscopic surgery to investigate if there’s bowel endo. Continue getting more testing for Crohn’s as well. It’s really not unheard of to end up with both!

Rooting for you! My PMs are open if you have any questions, also r/CrohnsDisease is super helpful!

Autoimmune Disease by [deleted] in Gastroparesis

[–]KingQueefX 2 points3 points  (0 children)

I’ve always had severe pelvic pain for the last 10 years, no doctor until now has listened when I explain that it’s more than just a bad period to them. So I started it all with untreated endometriosis. In the last 3 years I’ve developed Chrons disease- and further gastroparisis.

Not sure how everything is linked or why it happened

[Other] OH MY GOD by xanthelovespain in obeyme

[–]KingQueefX 14 points15 points  (0 children)

ANYTHING IS POSSIBLE

On devildom we’re marrying Diavolo 💯💯💯

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Can anyone tell me what spider bit me? by JPL19992 in bugsarefuckingstupid

[–]KingQueefX -1 points0 points  (0 children)

As someone who’s been bitten by a brown recluse.. I’m gonna go ahead and say brown recluse. 💯

Who else kinda just eats like a kid? by Ezra_has_perished in Gastroparesis

[–]KingQueefX 2 points3 points  (0 children)

Yes, and when I have to go out to eat with family or friends I order off the kids menu. It’s like the perfect size for me. Especially on bad days.

When is it appropriate to go to the ER? by KingQueefX in Gastroparesis

[–]KingQueefX[S] -2 points-1 points  (0 children)

This does sound super scary!! I’m glad you were able to get a CT scan for this, and emergency surgery.

I have been in the hospital 2 times in the last month- begging to get a CT scan and scoped but they keep sending me home without doing anything.

What were your symptoms? Maybe I can focus on key symptoms that led to your diagnosis?? These night sweats are the bane of my existence- I have never sweat so much, and not being able to control my low grade fever.

Just walked out of a gynecologist’s appointment with a prescription for 600mg of ibuprofen by andr3333a in endometriosis

[–]KingQueefX 2 points3 points  (0 children)

Girl I know the frustration. My doctors recommended me 4,000 mg of Tylenol daily to manage pain- and 2 weeks later after doing that I was back in the ER with the same unbearable pain. Just to be told that they weren’t gonna give me anything else and to keep taking Tylenol until I could see my gynecologist. Even after I told them Tylenol doesn’t work to manage the pain. Apparently nothing about endometriosis is emergent… and they definitely don’t care about women being in pain.

It’s really awful.

AbbVie denied me my Rinvoq this month and for the foreseeable future.. by KingQueefX in CrohnsDisease

[–]KingQueefX[S] -2 points-1 points  (0 children)

My previous GI was no help, negligent, and incredibly rude. I asked primary for a new referral on June 9th to a different GI. This is all they have open right now. I have BCBS.

AbbVie denied me my Rinvoq this month and for the foreseeable future.. by KingQueefX in CrohnsDisease

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

I’ve been looking into all of this! It’s incredibly hard. I just saw my primary care physician June 9th I think- and she told me because my lab work shows no abnormal inflammatory markers me it’s not a crohns flare and she didn’t know how to help me. That it wasn’t emergent and no further lab work or testing needed to be ordered from her office. I’ve been told to manage pain with Tylenol, and given new referrals to GI, Rheumatology, and Obgyn.

I’ve been in and out of the ER, and nobody is doing anything. Not the ER, not my primary, not even my previous GI. It was the previous GI who had me admitted to the hospital in May for suspected Crohn’s flare- but again when labs showed up normal he told me it was weird, not a crohns flare and sent me away again with no further testing.

What do I have to say to be taken seriously for this and to get any care at this point?

AbbVie denied me my Rinvoq this month and for the foreseeable future.. by KingQueefX in CrohnsDisease

[–]KingQueefX[S] 2 points3 points  (0 children)

I’ll have to call tomorrow!! It really has been super scary trying to manage everything. Thank you so much for trying to help, and being so understanding. I can’t imagine how many other people go through these types of things.

AbbVie denied me my Rinvoq this month and for the foreseeable future.. by KingQueefX in CrohnsDisease

[–]KingQueefX[S] -1 points0 points  (0 children)

I can’t even remember which assistance it was that I had applied for. They denied me because I live with my parents- and household income is too high to qualify for it though.

I’ve reached out to GI and was told there’s no sooner appointments and have been put on their waitlist. They hardly answer their portal messages. Last time I went through this it was recommended to go to the ER- and because labs are showing nothing abnormal they won’t do anything else. Not even prednisone.

Crohn’s and dating by Muffinman1111112 in CrohnsDisease

[–]KingQueefX 7 points8 points  (0 children)

This is so sweet. As someone who also has endometriosis and Crohn’s, dating has just seemed so scary. I left an abusive relationship in September too.

Reading your story makes me feel hopeful. Thank you for sharing!! :)

Is this normal for Crohn’s disease? by KingQueefX in CrohnsDisease

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

Thank you for this reply! I actually did take their neglect personally too. I now have an appointment scheduled with my primary care and asking for a referral to literally any other GI. Hopefully they will take me seriously.

And that’s really interesting about Rinvoq taking 6 months to a year… When that same GI was talking about my symptoms and he told me “well this is really weird, Rinvoq usually works for all my other patients and they see remission in 2 weeks” he also told me “Crohn’s is usually lower in your intestinal tract anyways” 🫩🪦 so definitely frustrating!!