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Can I say “I can’t take it anymore?”

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Crohn's Disease
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Posted 11/21/2023 3:17 AM (GMT 0)
I’ve had Crohn’s for 16 years. The first 9 years I wasn’t eligible for biologics as my disease was still evolving until I developed a perianal fistula and took Remicade. It could heal my fistula and my Crohn’s was bearable until I failed it last year. Also, I failed Stelara thereafter and developed a new perianal fistula on top of the old one and had blood loss for which I took iron infusions.
Started Rinvoq mid August and could finally finish the 12 week 45 mg loading dose yesterday. It has already given me the gift of elevated cholesterol level but it hasn’t kicked in yet. Until yesterday, I had this unexplained pain I get in the terminal ileum after eating and I don’t have any strictures. Will start to go down to 30 mg today.
Don’t want my post to be a rant but I feel I’m drained. I’m off work this semester but I had to go to work two days ago. When my friends and colleagues saw me, they all commented that I’ve lost weight, look pale and have dark circles under my eyes though I’ve worn make up to hide them. I feel I’m weak and this pain I have below the beauty bones because of my GERD and gastritis in addition to muscle pain and fatigue really bother me but I don’t know whether my GI would understand this or not. Lately, things haven’t been Ok especially with my stomach and I was very constipated and I don’t want to screw things up. I’m already taking Ensure to avoid terminal ileum pain and get energy but I feel I can’t fight pain more than that. I have done that for 9 years + last year. These are 10 years. I feel I need to collapse physically and not psychologically as I still have hope that Rinvoq would kick in soon and things would get better but at the time being, I feel weak and drained.
Posted 11/21/2023 11:56 AM (GMT 0)
Minnie,

So sorry that you're feeling so exhausted and I'm sure at your wit's end. This disease can be incredibly difficult to manage, and at times can take total control of one's life. I think you need a full on "rant" for starters, but a systemic plan on what to do going forward will be the best way to get on the road to feeling well.

At this point, I think you need an advocate. Do you have a close friend/family member that can accompany you to you next appointments? You really need a bad cop type that isn't afraid to push the Doctors on you behalf. This is tough for patients to do, as they always fear that it will result in neglect, but today, you need to be forceful about you health unfortunately.

I also think you need to get a close look at your TI. The persistent pain there could be scarring that needs resecting at this point. I'm guessing mind you, but just encouraging the best approach possible. Has a surgeon seen any diagnostics that you've had done? Could you get an MRI scheduled?

I'm not familiar with Rinvoq at all, and have no idea of how long it takes to reach a therapeautic level to be effective.

I really hope you get something done soon. Even if you could get to feeling a little bit better, baby steps as they say. You might be able to get some renewed vigor. Enough to keep moving forward.

Keep us posted Min'. Wish I had some more earth shaking advice for you.
Posted 11/21/2023 8:14 PM (GMT 0)
Got nothing more than what Monte said, but good wishes😇
Posted Yesterday 9:59 AM (GMT 0)
Dear all
Thank you so much.
Waited for a week hoping that I would get used to the new 30 mg Rinvoq dose side effects but I couldn’t. Diarrhea increased and so was the urgency, and pain in the terminal ileum became unbearable. Saw my GI yesterday. He said that he can’t up the dose of Rinvoq to 45mg as the maintenance dose is 30 mg and the insurance company won’t approve of it. When he said that I had to bear up with the pain, I reminded him that I have been suffering from Crohn’s for 16 years now and apart from the 7 good years of Remicade, he had always asked me to bear up with the pain and I can’t take it any more. At this moment, he wasn’t nice to me but I was very decisive too and insisted to be treated or at least to soothe my pain. So, he put me on dexamethasone injections every day for 3 days and then it would become every other day for other 3 days. He also prescribed solpadeine for the unbearable pain in the terminal ileum. Entocort and Imodium will be taken as usual. We also added Ensure. He mentioned something like 6 months for Rinvoq to kick in. This is my 4th month. Other people have mentioned that it worked quite quickly for them within days for UC and two months for Crohn’s. I don’t know why my body’s response to meds is so slow if there would be any.
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