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Pain already coming back

So its only 10 days since I finished taking pred. All was going ok, until I woke up at 5am this morning with quite bad stomach pains, and I had to get up to go to the toilet and I had diarrheah. This hasn't happened to me since before I went into hospital in December.
I still have a long time to wait until I start infliximab. Do you think I should contact my GI? Or should I give it a couple of days and see if it was just a bad night?
Why does it have to come back so quickly? :(
I'd get in touch with your GI, at the very least if they don't do anything at least they'll then be aware of the situation

Until then we're thinking of you Holly, its dreadful feeling like you're letting Crohn's run free!
I would definitely call your doctor and just get it on the record that you don't feel well. Maybe they can rush the infliximab or start you on another course of prednisone (although that is never fun). I'm so sorry it's come back so soon. This disease is unrelenting!


Super Moderator
Absolutely let your doctor know. Like those above said if anything they can put you back on the pred until you are able to get your other meds. Could be a slower, longer taper is needed. In the meantime just keep track of your symptoms and be ready to report to your doc. So sorry you have to go through this :( we all know just how fun it is to flare...:yrollseyes:
Hi there,

I`m exactly the same, I do finished pred 8 days ago and have had trouble within a few day, luckily I'm due to see my GI in a couple of days. I've put on a huge amount of weight on pred, is this normal?

Hope you get something sorted, good luck.
Hi Holly
Thinking of you and sending you my best wishes. Like everyone else I think you should let your GI know and see if they will speed up your infliximab.
Lots of hugs.
Lizbeth, yes weight gain can be a side effect of Pred, especially if you'd lost weight before starting it.
Thanks everyone.
I have actually felt all right for the rest of the day - just a small amount of pain, and only one bm.
I'm guna hold on for a couple of days and see how it goes.
I really don't think there is a chance of speeding up the infliximab, its taken me so long to get here as it is.
Its very frustrating!
Ive seen your story on other threads .. sorry the pain came back so quickly!! is pred all you were on? if yes your crohns is still active and seemingly untreated so its naturally going to cause problems .. perhaps low dose pred could tide you over? x
I was gonna say give it maybe 2 days, tell yourself you're not going to worry or stress about it over that time - let your body do what it's going to do - then after that time take action. And continue not to worry or stress

p.s. aren't you due for a blog update ;)
I am also on 40mg of aza as well. Which is next to nothing to be honest!
Its going to be hard not to stress over the next few days - I have another two job interviews. I can't help but get nervous.

lol, yes I probably am due an update. I don't update too often because I kinda need to be inspired to write something. So it all depends on whether I think... hmm I'm going to blog about that! :p
I've been on aza for almost 5 years, I can't increase the dose because I'm TPMT deficient.
Its so annoying being on 40mg though because they have to get the 10mg capsuals on special order and it takes the pharmacies forever to get them in so I usually run out between months. And the doctors always tell me how expensive it is... Well sorry I can't change my dose!
Hopefully I can come off it 6 months into infliximab.
It annoys me how every single doctor always says: How come your on such a small dose? Even my GI asked me that when I last saw him!
That sux :( 40mg probs isn't very therapeutic but at the same time they might keep you on it to minimize any chance of you developing antibodies to remicade, I'm currently on 50mg imuran but plan is to increase to 100, (I'm only 53 KGs) so that should be pretty powerful for me, I hope you find remission soon!
Also, there is something called alluperinal or something starting with A that GI's are starting to give patients as it helps them metabolize thioprine better, but you've been on it for 5 years I'm sure your GI woulda mentioned something
Yeah I think that is why they are keeping me on it. I started off at 100mg and that is when they realised about my TMPT deficiency because I had bad side effects. I then went down to 50mg which I was on for a few years until my liver tests came back not quite right (I don't know what the result was) So I had to come off completely until it went back to normal. I then had it on 10, 20, 30 then finally 40mg, testing all the way to make sure my liver function was ok. I have stayed on 40mg ever since.
To be honest I wish we had tried something else the min I couldn't take 50mg. Fistulas have developed while I have been on such a small dose, and I flare so far every two years so it clearly doesn't do enough!


Super Moderator
LMV, just a thought, if you don't want to go back on pred, perhaps a taper of Entocort would get you through until you can start the infliximab? Personally Entocort worked well for me and it tends to cause far fewer side effects than pred. At any rate, I definitely agree with the others that you should call your doc about this - as my GI says, he can't help if he doesn't know what's going on. Hang in there!