How do you tell if symptoms are improving

[Ihatecrohns88]

Hi I've had crohns for about 13 years. I feel like I've been lucky as right now I'm only experiencing my third flare up. Because of this though I'm so uneducated about it and am having a really hard time. Two weeks ago I started asacol hd and have been on 40 of prednisone for about a month. My symptoms got somewhat better at first but this week has been terrible and seems like a step back. I've spoke with my doctor who says I need to give it more time but I'm really scared. I've limited food to eggs avocado and oatmeal. I feel like that's all I can tolerate and I've dropped so much weight (and i was only 130 to start) What are some signs to tell if I'm improving or the symptoms are getting better? Please let me know how you could tell when you were starting to reach remission. I feel like I'm giving up hope.

 

[Justanothercp]

You'll feel it if you're improving, you'll know. But stick to a good diet, maybe look at SCD diet. (personally I follow Paleo/low FODMAP, lots of work, but it helps me)
Be patient (no pun intended), if things don't improve, see what MD says.... Hope you can stay away from surgery, but if it ever comes to that, you will feel much better after.
Good luck and keep us posted.

 

[Cross-stitch gal]

One thing that I tried to remind myself when I was in a long 2 year flare was: I didn't get sick in a hurry, so I won't get better in a hurry either. It will happen, even if it takes a little longer to get there. Hang in there. We're here for ya.

 

[Ihatecrohns88]

Thank y'all!! I actually found out today that I have been taking my prednisone incorrectly. Spreading it out through the day instead of all at once. I wonder if anyone else has made that mistake. Hopefully I'll start to see some more improvement now. It helps talking to people who have same
experiences.

 

[Cross-stitch gal]

I've never heard of spreading out the dose of prednisone. I've always taken it all at once. Hopefully you'll notice the difference though. Please keep us updated.

 

[UnXmas]

I'm not sure the timing of taking prednisone will make a difference. I was told that spreading it out increases the risk of adrenal gland problems long term, and that taking it all first thing can help with the insomnia it causes, so was advised to take it all at once, but not because it would increase its effectiveness.

Prednisone tends to work pretty quickly. You'll know if you're improving. If you're having to ask whether you're getting better or not, you're probably not getting better. I'd speak to your doctor again.

 

[Desperatemom]

If you dont feel better after a few days on predisone, you need to let your dr know. My daughter was given predisone for flare ups at very beginning of diagnosis and she would feel difference within a day. Now predisone barely makes a dent so she started Remicade. As far as timing of dosage, she has always been told to spread dosages. Both from pediatric GI to current GI. I guess each dr prescribes dosages differently but regardless, it should work pretty fast

 

[hawkeye]

Pred has typically worked quick for me. Reading your post, although maybe there is both active inflammation (that the pred reduces) and scar tissue (stricture) that medication won't handle. Or it could be that additional meds are required (like the Asacol) to keep the inflammation in check.

 

[lilac]

you'll feel better within yourself generally.

I'm currently in an "active resistant flare" - have been for a year. Meds take forever to work but I recognise remission by seeing a reduction of blood in my stools, going to the bathroom less frequently and being able to eat comfortably i.e back to my "normal" diet, for example.

Are you taking anything like Adcal as your on steroids? Always take Adcal for bone density, especially if you think your going to be on steroids for a while.

I hope you feel better soon

 

[DaisyB]

This is a really good question OP and something I've wondered. Is it possible to be in remission but still have urgency, loose BM and bloating? Can you be in remission but still have some inflammation?

Medications have helped relieve the worst of my symptoms - I don't have the same pain and no blood loss - but I'm not 'normal'. I'm wondering if having an IBD means I won't ever be normal again or if I just need the right medication?

 

[Ihatecrohns88]

So after getting an opinion from a different doctor he noticed that my symptoms started getting worse after I started the asacol. Apparently it has that affect on some of his patients. I quit taking asacol Saturday and have noticed a slight improvement at least in frequency and pain level. Has anyone else experienced this