Crohn's reflaring?

[SammyD]

Hi everyone,
I am fairly new around here and new to Crohn's so just after some advice. I have been on pred for 7 weeks tapering every week, I am currently down to 5mg an am due to stop taking it in a few days.

Since my last taper on Sunday from 10mg to 5mg I have been seeing spots of blood again on the toilet paper. It is nowhere near as bad as when I was diagnosed, but it is back. It is also bleeding in between BM's (just a few spots). The thing is, I will bleed for half a day to a day, then it seems to clear up, then its back again? This confuses me. I had some D as well a few days ago but no BM's since (this is my usual pattern prior to diagnosis), but still some blood here and there.

I am due to see the GI in a week, just wondering if this is a sign up that I am flaring up again at the low pred dose? Do I need to call the GI/IBD nurse before my appointment or should I wait? Not sure whether I should be tapering off or not now. I am so confused, I have no idea what is normal/not normal and I don't know what warrants a call and what can wait. I am currently on 4g Pentasa daily as well.

Also, my eyes have been sore this week - quite light sensitive/achey, but this also comes and goes along with pretty bad joint pain. Something to discuss with the GI? I know pred tapering can also cause these problems. Does anyone else have eye/joint problems? What should I do about this?

Thanks for any help.

 

[Josephine]

It can not hurt to phone the IBD nurse just brief chat.

 

[Cross-stitch gal]

I too would contact the doctor in the morning. They might have some ideas to make you more comfortable until you're able to be seen. Or, they might even recommend for you to come in a little earlier. Please keep us updated.

 

[SammyD]

I was feeling ok today, so decided to just wait it out. Bad idea. I think I am actually flaring up again as the same old symptoms are back tonight with enough blood to make me worry.

I've emailed the doc, but he probably won't get back to me until Monday. Wish I listened to my gut and called today, but thought I would be ok and I am sick of hassling him with my worries. He is very good but I feel guilty as I am sure he has other patients that are in worse shape than me.

Crohn's sucks

 

[Cross-stitch gal]

Sorry you're suffering so. If you don't hear from him tomorrow morning, I'd call him. Better to get taken care of now rather than wait it out if you're uncomfortable. Hopefully things will get worked out for you soon. :hug:

 

[SammyD]

Thanks Cross-stitch gal, feeling a bit sorry for myself as I have been pretty ok lately, then in the course of half an hour its all back. The pain has been horrible. Doc will probably want to put me on Aza as we spoke about it last time but he wanted to give the pentasa a little longer. Doesn't seem like its going to work for me though. I have been so good too, been really strict with the diet he wanted me on, trying to stay stress free/taking it easy, sleeping lots (I need to anyway I am so fatigued) and minimising late nights, no drinking, eating healthy, all so I can heal, and it still comes back.

Not happy and feeling sad and frustrated

 

[Cross-stitch gal]

Sometimes things just don't work out. Make sure and let them know about this too. The more info they know, the easier it'll be for them to be able to help you. This is why they're there, to help you. Hopefully you can get in tomorrow somehow. Xxxx