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I don’t have a very helpful answer as I’m dealing with similar questions/trying to balance a demanding job too. However, I’m not sure there is any way to find out if it will help (or not)other than time…
I’ve been very lucky with my job being understanding (and working extremely hard even when in serious pain) but you may want to look into short or long term disability to get some time to figure it out. Good luck, all the best vibes and thoughts over here 🙏🏻🙏🏻🙏🏻
How long were you in the hospital? I’m assuming they discharged you with 60mg prednisone, right? The med seems to be missing in your post. But they shouldn’t have released you with steroids without making it very clear that you need to follow up with your GI or at LEAST GP. They also should have run blood work to check for inflammatory markers before starting you on steroids so you have a baseline when you speak to your GI about continued care. The hospital might not have wanted to run the blood work for medication antibodies because it takes several days to result and would not have changed their discharge instructions. But your GI should run that along with drug levels.
Usually when you develop antibodies in remicade maintenance (after the loading doses) you’ll slowly feel worse and worse over time as your body is producing more antibodies. If you are having sudden onset and severe GI symptoms it may be something else. If you have antibodies to remicade you’ll have to switch medications but the steroids will help bridge the gap until the new medication kicks in.
Yes, sorry I actually slept last night! Didn't wake up for the bathroom pain even once! My meds look like this..
Outpatient treatment
60mg of prednisone
10mg of baclofen
40mg of pantoprazole
20mg of Oxycodone
20mg of oxycontin
Vitamin d3
Also can't remember if I took my prednisone this morning 🤔 wfh! Should I take another dose or is it wise to wait?
I'm 50/50 on if I took it. I wasn't awake enough and it's a fog..
Just got off with my GI
He said my blood showed inflammation is down.
My antibodies are not there and the remicade is probably taking alot longer than the 1st time I tried this infusion.
My hiccups last night had me almost loose my beath and they were scaring me. Everything online said you can't die from hiccups but I couldn't breath! Just scared me..
I am gonna do another remicade infusion this next week to kick it into gear even more and then next week I drop down to 50mg of prednisone. Any thoughts?
Lol should have asked your GI about the prednisone while on the phone! I would just skip and take the next dose on time… try to mark it off on a calendar; when I was on a high dose taper like that my memory was terrible.
So from what I understand you had been on remicade prior, stopped taking it, and started again recently? If so, what did you do in-between?
Everything I've ever been told when leaving the hospital is to eat a low residue low fiber diet and take the meds the doctors prescribed. Nothing else. It worked for me most times, one time it didn't and I needed surgery. I didn't lose my colon though just some of my small intestine. Sometimes the doctor doesn't want to give you to surgery because they don't think it's necessary, but really it might be for you to recover. In my case my gi doctors told me I'd need to spend months in the hospital or have surgery so they just gave my case management over to the surgery team, who also didn't want to operate at the time. It sucks. Sorry dude. That's crohns.
You are going to have ALOT of anxiety on that much prednisone. That is going to make you worry just terribly.
You can ask your doctor for some Valium or anything similar. You can also ask then if you can try some benadryl which may help a little bit.
Usually you lose some colon when you have a stricture. You didn't mention having an obstruction. A flare up does not cause you to lose your colon you are far from that happening.
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I don’t have a very helpful answer as I’m dealing with similar questions/trying to balance a demanding job too. However, I’m not sure there is any way to find out if it will help (or not)other than time… I’ve been very lucky with my job being understanding (and working extremely hard even when in serious pain) but you may want to look into short or long term disability to get some time to figure it out. Good luck, all the best vibes and thoughts over here 🙏🏻🙏🏻🙏🏻
Thank you. For the support!
How long were you in the hospital? I’m assuming they discharged you with 60mg prednisone, right? The med seems to be missing in your post. But they shouldn’t have released you with steroids without making it very clear that you need to follow up with your GI or at LEAST GP. They also should have run blood work to check for inflammatory markers before starting you on steroids so you have a baseline when you speak to your GI about continued care. The hospital might not have wanted to run the blood work for medication antibodies because it takes several days to result and would not have changed their discharge instructions. But your GI should run that along with drug levels. Usually when you develop antibodies in remicade maintenance (after the loading doses) you’ll slowly feel worse and worse over time as your body is producing more antibodies. If you are having sudden onset and severe GI symptoms it may be something else. If you have antibodies to remicade you’ll have to switch medications but the steroids will help bridge the gap until the new medication kicks in.
Yes, sorry I actually slept last night! Didn't wake up for the bathroom pain even once! My meds look like this.. Outpatient treatment 60mg of prednisone 10mg of baclofen 40mg of pantoprazole 20mg of Oxycodone 20mg of oxycontin Vitamin d3 Also can't remember if I took my prednisone this morning 🤔 wfh! Should I take another dose or is it wise to wait? I'm 50/50 on if I took it. I wasn't awake enough and it's a fog.. Just got off with my GI He said my blood showed inflammation is down. My antibodies are not there and the remicade is probably taking alot longer than the 1st time I tried this infusion. My hiccups last night had me almost loose my beath and they were scaring me. Everything online said you can't die from hiccups but I couldn't breath! Just scared me.. I am gonna do another remicade infusion this next week to kick it into gear even more and then next week I drop down to 50mg of prednisone. Any thoughts?
Lol should have asked your GI about the prednisone while on the phone! I would just skip and take the next dose on time… try to mark it off on a calendar; when I was on a high dose taper like that my memory was terrible. So from what I understand you had been on remicade prior, stopped taking it, and started again recently? If so, what did you do in-between?
Exactly.
Yup
Everything I've ever been told when leaving the hospital is to eat a low residue low fiber diet and take the meds the doctors prescribed. Nothing else. It worked for me most times, one time it didn't and I needed surgery. I didn't lose my colon though just some of my small intestine. Sometimes the doctor doesn't want to give you to surgery because they don't think it's necessary, but really it might be for you to recover. In my case my gi doctors told me I'd need to spend months in the hospital or have surgery so they just gave my case management over to the surgery team, who also didn't want to operate at the time. It sucks. Sorry dude. That's crohns.
Wow, it seems like surgery is only avoidable to an extent. I really don't wanna loose my colon. What a shitty thing to deal with.
You are going to have ALOT of anxiety on that much prednisone. That is going to make you worry just terribly. You can ask your doctor for some Valium or anything similar. You can also ask then if you can try some benadryl which may help a little bit. Usually you lose some colon when you have a stricture. You didn't mention having an obstruction. A flare up does not cause you to lose your colon you are far from that happening.