Probably been asked before but bleeding question

[aideen33]

(Note first, I am out of town and will call my doc when I get back Friday morning)


Before I freak myself out.... Back story- DX is currently Crohn's colitis but doc suspects small bowel involvement but hasnt been able to confirm yet due to difficulty doing a capsule endoscopy on me.

Ive had bleeding with diarrhea for some time, doc knows this. We are tapering the prednisone (down from 40 to 30 right now, next week to go to 20) in prep for transition to Aziathioprine or Humira.

Since the taper started, the bleeding increased which i kind of half expected since there is less pred to control the inflammation. But the last 12 hours, major increase. Im not like going to pass out from blood loss or anything but it has significantly increased. As in thicker, higher volume, etc.

While I am going to call the doc obviously once Im home, has anyone got any insight on why it might have suddenly ramped up like that?

thanks!

 

[theOcean]

Call your doctor. If your symptoms are getting that much worse you shouldn't be tapering. It just means you need more time on a higher dose of prednisone so it can treat the inflammation. Tapering too quickly won't allow it to do that.

Can you ask about starting Azathioprine sooner, or while you're still on Prednisone? It takes three months to reach therapeutic levels and that's too long to be sick...

 

[aideen33]

I have an appt on the 11th but i think thats too long to wait so when I get back into town on Friday I will call the office and see what they want to do i guess. Im guessing we tapered too soon, i know he wants me off the pred and on something long term since the Asacol HD has done very little for me, but this ramped up quite a bit with the taper so *sigh* I suspect its gonna mean going back up for a bit but we will see I suppose.

 

[Lady Organic]

Call your doctor. If your symptoms are getting that much worse you shouldn't be tapering. It just means you need more time on a higher dose of prednisone so it can treat the inflammation. Tapering too quickly won't allow it to do that.

Can you ask about starting Azathioprine sooner, or while you're still on Prednisone? It takes three months to reach therapeutic levels and that's too long to be sick...

I support these 2 claims. call your dr asap and they can change your prescription by sending a fax to whatever pharmacy you are near by. 11 days for your next app is too long in your relapsing case.

 

[aideen33]

Ive just been breaking one of the preds in half, i have 20 mg pills so i went to one and a half when we dropped from 40 to 30. Perhaps I should call and see if he wants me to go back to 2 a day instead?

 

[Lady Organic]

call tomorrow. there is even a chance your dr will want to put you on a higher dosage than what you started with.
good luck.

 

[aideen33]

Just spoke with doctors office. Apparently i am to go back to 40mg immediately and if not improved in 24 hrs to ER for IV

 

[Lady Organic]

im glad you could get rapid intervention. One thing I know with crohns it to not let it aggravate. Good luck and let us know how it goes.

 

[aideen33]

well the bleeding has slowed. Not gone but slowed. Am continuing the 40mg pred and have moved my appt from the 13th till the 11th, which was best i could do since doc has left on vacation and is gone all this coming week.

 

[Hope345]

please keep us updated. I am anxious to hear that you are doing better eventually without the prednisone. Crohns in the colon can cause much more bleeding, and harder to control. the cortifoam seemed to help my daugher the most (if bleeding is in sigmoid colon or lower)

If possible, try to find something you love to do to occupy your time: jewelry making, painting, or anything so you keep living. (I only say this because some stop living, waiting for all of this to go away)

take care

 

[Lady Organic]

in my experience, cortifoam is good but only for mild symptoms or early relapse. After a while when disease is more aggressive it stops working or has minimal impact. It also goes in the first 25 cm only, so its action is very limited.

 

[aideen33]

Doc had mentioned the idea of the enema early on, but seems to have abandoned it due to my lack of response even to prednisone(there was improvement but not anywhere near what he wanted to see) and his suspicion (unconfirmed yet but suspected) that there is small bowel involvement. Will be talking to him on the 11th about the decision process as to whether we do Aziathioprine or skip it and go to Humira/Remicade (Doc has already stated he believes Aziathioprine will fail and i will eventually need to consider humira/remicade)

 

[theOcean]

Humira and Remicade would hopefully kick in much faster for you if you do consider going on them. I've been on both if you have any questions about them.