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08-30-2010, 05:23 PM   #1
wolfem
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Location: Tucson, Arizona
Entocort

So, my doctor doesn't want to put me on entocort. He says because I had my terminal ileum taken out that it wouldn't do anything-- it only has an effect on the terminal ileum. He wants me to wait until they do the pill camera to see if I'm having a flare! I know I'm having a flare already.

I have some entocort here at home. It was prescribed awhile back before my surgery but I was never able to take it during that time. I'm tempted just to start taking it. I don't want to wait until I have blockage and then have to go to the ER again. What should I do?



____________________________
Diagnosed: Crohn’s December ‘09
Gastritis August ’09, TMJD 1992
Surgeries: 1-terminal ileum removal
Treatments: Current- pentasa
Past- pred. aciphex, ranitidine
Other: Multi-vitamin, calcium,
digestive enzymes, probiotics,
and fish oil
08-30-2010, 05:55 PM   #2
Crohn's 35
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I have had my a resection of the Ileum too but there is some evidence it could still work. He could be right thought since my second resection it hasnt worked, I have tons of it too. What other meds have you got stashed?
08-30-2010, 07:26 PM   #3
wolfem
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I've been on prednisone but had really bad side effects from it. The only medication I'm on now is pentasa. I can't tell if its the pentasa that is making me nauseated or the flare. At any rate, I'm still having symptoms. I'm very worried.
08-30-2010, 07:35 PM   #4
Crohn's 35
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It is hard to tell but Pentasa is mild and of course doesn't keep the flares down very good. If Prednisone isnt for you, the only thing that helps is Flagyl and or cipro, but if you are having spasms you may need a antispasmotic. I would see if you can get an appt to see the doctor sooner. When is your pill cam? Just to ask if you feel a blockage isnt a pill cam risky? Just wondering. Sorry I cant help and Entocort takes a lot longer to work. Pred is faster but as you say, a reaction. Sorry I am not much help. Can you call your doctor? Good luck!
08-30-2010, 08:10 PM   #5
wolfem
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This is a really difficult situation. Strangely enough, if it is the pentasa that is causing the gastro upset then I was told in the hospital that taking aciphex along with it would help protect the stomach. Weird. Anyhow, they do a fake pill cam first to be sure you don't have a blockage. Then they take an x-ray to see if the fake pill gets stuck. If it gets stuck, then it will dissolve.

I don't have diarrhea but my abdomen looks like a beach ball

Thanks Pen. I really appreciate the advice! I really need a new doctor because the one I have now, looks like he is uncertain about what to do next. I just don't understand why he wont let me try the entocort to see if it helps.

Last edited by wolfem; 08-30-2010 at 08:18 PM.
08-31-2010, 07:04 AM   #6
Rossy
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Entocort (budesonide) works on both the ileum and right side Colon, so your Docs reason for you not using it, due to the loss of your terminal ileum, isn't valid.
I was on budesonide for a while and it worked well for a period, it presents very few side affects as opposed to pred and i liked it.
Hope you feel better soon.

G
__________________
Pancolitis
2003


Just about hanging on to my Colon!
Mezavant xl
Pred (my back up)
Entocort (no longer works)
Azatrophine (gave me pancreatis - ouch)

Last edited by Rossy; 08-31-2010 at 07:08 AM.
09-01-2010, 06:23 PM   #7
kenny
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I just got put on it to help with some swelling at the resection site in what seems like the same spot as the rest of you. My take on it is that it releases around that point regardless of what surgery we had. If thats where the swelling is it will do its job. If we had an ostomy and the pill was just shooting out that would be different.

I'm going in for a scope in a week or so to check things out but he thought it would be good to help me get through work days for now. Hope you get sorted and feeling more better soon.
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Rectum? Damn near Killed'em

Diagnosed July of 2009 / Surgery Oct 2009 / 175mg Imuran since Jan 2010
09-01-2010, 09:23 PM   #8
wolfem
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I just got put on it to help with some swelling at the resection site in what seems like the same spot as the rest of you. My take on it is that it releases around that point regardless of what surgery we had. If thats where the swelling is it will do its job. If we had an ostomy and the pill was just shooting out that would be different.

I'm going in for a scope in a week or so to check things out but he thought it would be good to help me get through work days for now. Hope you get sorted and feeling more better soon.
lol. Thanks Kenny. I finally convinced my doctor to put me on the entocort if my symptoms don't subside by the end of the week. I'm having my pill cam done sometime next weeks so they can determine how extensive my crohn's is.
Then I'll switch doctors.

Good luck with your procedure.

Last edited by wolfem; 09-01-2010 at 09:26 PM.
09-27-2010, 07:31 AM   #9
brennerh
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Hello all, very interested on your entocort convo. I too am taking Entocort right now to control a flareup (along with usual remicade). I too have had terminal ileum surgery, but only to take out the ileo-cecal valve and a small amount of ileum. Still, I guess that is technically terminal ileum either way.

My question is this: I have been bleeding rectally, and I am wondering if the Entecort could be the CAUSE of the bleeding? Even when I have had my worst Crohns problems I dont usually bleed.

Also, the comment about it only be effective on the right side (ascending/transverse colon). Is that really true? My whole colon is inflamed but my sigmoid/descending (leftside) is probably the worst!
__________________
I have had Crohns since age 10, I am currently 25 years old.
Ileocecal valve removed in '05, Colitis-type Crohns since surgery

Medicine:
Started Humira a few months ago after many years on Remicade.
09-27-2010, 12:18 PM   #10
Rossy
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Also, the comment about it only be effective on the right side (ascending/transverse colon). Is that really true? My whole colon is inflamed but my sigmoid/descending (leftside) is probably the worst!
From the makers website:



"What Is ENTOCORT® EC?
ENTOCORT EC is a prescription medication used to treat mild to moderate Crohn's disease in many people. However, it does not work for everyone who takes it.

ENTOCORT EC is approved to treat mild to moderate Crohn’s disease affecting part of the small intestine called the ileum and/or part of the large intestine called the ascending colon. It is used for the treatment of active disease to help control symptoms and achieve remission, and for maintenance therapy (once symptoms are under control) to help maintain remission.

In many patients, Crohn's disease is commonly found in the ileum and ascending colon. That means ENTOCORT EC may be appropriate for many patients with mild to moderate Crohn's disease affecting the ileum or the ascending colon.

So What Kind of Medicine Is ENTOCORT EC?
ENTOCORT EC is a nonsystemic steroid, which means it works mainly in one area of the body. The medicine in ENTOCORT EC is released in the intestine. Therefore, it helps control the symptoms of mild to moderate Crohn’s disease affecting the ileum and ascending colon even though 90% of the drug does not go into the bloodstream. Also because of this, it causes fewer severe side effects than other corticosteroids."

Last edited by Rossy; 09-27-2010 at 12:20 PM.
09-27-2010, 01:59 PM   #11
brennerh
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Rossy, thanks for the reply. That is something else, my doc never told me that, not to say hes not a great doctor, but I know my sigmoid/descending is a big problem for me, and Entocort does not look like the drug for that. Thanks again. -harry
09-28-2010, 03:58 AM   #12
Rossy
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Ok no problem Harry, hope you feel better soon.
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