Afraid of Entocort....and some other stuff..

[Jackie]

Hey there everyone. I recently was diagnosed - actually am glad about that since I read so many of your stories that showed it took so long!!!!

Some questions/fears that I have, maybe some of you can share or shed some light on stuff for me. First is whether or not any of you got diagnosed even though your colonoscopy was clean. My colonoscopy came back fine last week with the exception of slight swelling around the ileum. He went ahead and stamped the diagnosis based on my mouth ulcers, tummy issues (constipation and bad diarhhea alternating) granulomas found in a biopsy of a mouth ulcer and the blood test that came back saying I have an auto-immune issue. He thinks maybe my first "flare up" happened back in February when the mouth ulcers became an issue. Was curious if anyone else had the normal colonoscopy and still got diagnosed and if so what your doc said. The reason that I am asking is I have a husband that doesnt quite understand how it is that I have CD and my gut was okay at that moment. Of course I have been on Prednisone since February for the swelling I get from the mouth ulcers. Any thoughts? I am still so new to all of this.

Second question - I just finished Prednisone yesterday and am supposed to start Entocort today....afraid ....anyone take it and NOT have side effects? I am one of those people that seems to have side effects with everything! I take one Benadryl and I am groggy for two days. I am doing the 3mg 3X day for 30 days. He thinks that will help with my bowel movement issues and help me to go into "remission". Any stories or thoughts, I would be grateful.

 

[Cara Fusinato]

I took Entocort and it really doesn't have side effects. I had an unusual effect, which was sort of a blind rage after about a week. On the other hand, I was diagnosed, was upset over that, had a horrible horrible GI doc at the time, and a friend was causing some personal issues. It may have just been me losing it over personal reasons and nothing to do with the Entocort. I have taken it for short term a couple times with no effects.

Entocort is far easier to deal with than Prednisone so I would worry.

As to your colonoscopy, don't make it the be-all-and-end-all of diagnosis. Mine was a combination of colonoscopy, CT scan, Upper GI series with small bowel follow-through, bloodwork, AND visual when they went in and took out my appendix. I assume your doctor is looking at several diagnostic tools. Don't stick your head in the sand on this. If your Doctor is fairly certain, you are entitled to get a second opinion if you are still concerned, this is a progressive illness and treatment improves long term health.

 

[killerzoey]

Hi

I'm newly diagnosed as well and my colonoscopy only showed a few areas of inflammation. Nothing more. Biopsies indicated inflammation and I guess it looked unusual enough for him to want to biopsy those areas but that's all I really know. He didn't do my colonoscopy and say "aha - it's Crohn's!" Rather he saw a little something and ordered the blood test which predicted I had Crohn's.

My other symptoms were dull, vague upper right quadrant discomfort, and a gnawing hunger that would not go away no matter what I did. THe hunger lasted about 2 months and finally (thank goodness) subsided. The endoscopy showed chronic inflammation of my stomach, too, so I guess I have it there as well, though again, he didn't look at my stomach and say "aha - it's Crohn's!".

CT scan, small bowel series, abdominal ultrasounds all were normal. The only other abnormal finding, I guess, was that I'm slightly anemic. But he didn't seem to think that was a very big deal as I'm a menstruating kind of gal.

For whatever that's worth, I hope it helps.

By the way, I'm on Entocort 9mg a day and I don't notice ANY side effects. None. The Prednisone freaks me out but the Entocort I have heard mostly very good things about. I believe only about 10% gets absorbed systemically; most of the capsule only makes its way to the gut itself.

Best of luck to you. I know it's hard for our significant others to understand all this. Hard for us, too.

 

[karlyg]

I too am recently diagnosed, and have had several "mostly clean" colonoscopies that have only shown minor inflammation. X-rays and CT scans show thickening of the bowel walls, and blood/fecal samples show other stuff that has indicated inflammation. So, people get diagnosed in all kinds of different ways - mine took over 3 years to get them to really commit to it.
As for Entocort, I started it a few months ago, and it is pretty much the only thing that has really helped me, and (at least so far) I really haven't experienced any other side effects other than that I absolutely have to take it with food, or else get real bad abdominal pain. As long as I don't take it on an empty stomach, I am good to go with it. And, for me at least, it is SO much better than being on Prednisone (I had lots of the side effects with that one).
Good luck!

 

[Cara Fusinato]

My doctor told me to keep Entocort on hand, even though I don't take it every day. If I start to feel like I am going into a flare or getting discomfort, take it 3 pills a day for 3 days. It pretty much stops any beginnings of anything. I've had to do that maybe 3 times in the past year. Don't be afraid of Entocort. It's quite gut specific and has minimal effects on the whole body.

 

[old hat]

I took Entocort for 12 weeks at first and then another couple of weeks after I found out I couldn't tolerate the Asacol. I didn't notice any side effects at all. It worked like a charm for me.