What a Good GI Doctor Can be Like

Gloria · Post by **Gloria** » Sun Aug 01, 2010 9:09 pm

Wow, Charlotte, what great news! You've had the quickest response to Entocort of anyone in recent board history. That's a great sign and probably means that you'll be able to taper the dose quickly.

It certainly does sound like Imodium and/or Pepto Bismol were the culprits.

I hope your next pair of contacts work for you. I know what you mean about being unable to read labels when you're in the store. Maybe we need to bring a magnifying glass with us....

Gloria

wonderwoman · Post by **wonderwoman** » Mon Aug 02, 2010 12:07 pm

Today is my 4th day on Entocort and am doing well. Since taking my first three Entocort on Friday about 9:00am I had one D on Friday at 10:00am, then at 5:30 pm I had a much firmer BM and then nothing on Saturday. Sunday I was rather uncomfortable until the Norman BM at 11:30am and then nothing again until 8:00 this morning. The stool this morning was extremely firm. Because of something Gloria said I took it that it is unusual to have success this fast when going on Entocort. Is that right? How long does it normally take?

I am continuing with the simple diet that I have been on and recording everything in my diary. I will keep you posted.

Post by **tex** » Mon Aug 02, 2010 2:44 pm

Charlotte,

Looking at what members here report, it appears that success with Entocort EC typically occurs at about 10 days to 2 weeks, or longer. Everyone usually has a slightly different experience, of course. If my estimate is way off, someone please correct me.

Gloria may be right - the Imodium and/or Pepto-Bismol may have been the reason/s why you were unable to return to remission.

Tex

Joefnh · Post by **Joefnh** » Mon Aug 02, 2010 2:47 pm

Charlotte, for me I did notice a mild effect within the first 5 days, but it took until day 10 or so to really see the symptoms subside. It took about 3 weeks for the bloating to subside.

I am glad that this medication is working for you.

Best wishes

--Joe

Tanya Lynn · Post by **Tanya Lynn** » Mon Aug 02, 2010 3:08 pm

Hey Charlotte,

I'm glad to hear that the Endocort is working for you so quickly. It's day 16 for me and I have also been keeping a daily record (my husband calls it my
Log-Log) HAH if he only knew. It's definitely not a Log-Log... Anyway, I
am going anywhere between 8-12 times in a day and it's stil D.

I keep waiting on the day that it's gonna be just a normal BM.

This is just the weirdest thing talking to complete strangers about your
bathroom habits. Oh well, I've learned so much here and I'm so excited
to have found everyone here..

Hope you keep doing well on the Endocort.

Tanya

Gabes-Apg · Post by **Gabes-Apg** » Mon Aug 02, 2010 4:16 pm

Tanya

that is one of the WONDERFUL things of this site is that it is the place we can talk about poop (good and bad), gas or bubbly butt, baboon butt (rash)
you sound alot better, there is no instant cure, it is small improvements day by day.

Charlotte - do you think the marked improvement is because you are not having the lactose?

wonderwoman · Post by **wonderwoman** » Mon Aug 02, 2010 6:01 pm

I was avoiding dairy right from the beginning and therefore would not have had any lactose that I am aware of.

I better explain something that I just now realized. I think it was July 21 I talked to the nurse and she told me to take Imodium instead of Pepto Bismol. My husband was going to Walmart July 22 so I told him to pick up generic Imodium. He brought home two packages (48) of the Walmart brand. I began taking them on July 23.

On Saturday July 24th I was at Costco and hadn't taken enough Imodium before I left home so I was having D while at the computer store and then again at Costco. Because I was eventually going to run out of the Walmart brand I bought the Costco brand and took two right away at Costco. Those were the only two I took of the Costco brand.

When I got home I went back to the Walmart brand. I had cut the pills out of the packaging and put them in a small container. I threw away the Walmart box. Therefore, I don't know if there was lactose in the Walmart brand or not. And I didn't realize there was lactose in the Costco brand until I believe Gloria mentioned it.

If there was lactose in the generic Pepto Bismol I used in May, June, & July I won't know. Don't have any boxes left. We had some brand name here that I took months ago, then before the trip I bought two boxes of the CVS brand. In Washington we bought two boxes of the Walmart brand, and then in Alaska I bought two boxes of a strange generic brand at a little mom & pop grocery store. There were no drug stores in the town. I remember I quit taking them the day we got home and no improvement for a whole month. In mid July I got more at either CVS or Walmart.

Without me knowing exactly what was in the products I used I cannot say that it was this or that that may have caused it. All I know is I am doing well now on the Entocort.

I just wish sometimes I wouldn't think I was such a Wonder Woman. I thought if someone can do it without drugs I surely can. Maybe I would have switched Rx's sooner. I did ask the pharmacist about Entocort on June 16 when I got back from vacation and she encouraged me to stick with the Balsalazide. So I did.

Trial and error. Two steps forward, one step back. Live and learn.

Gloria · Post by **Gloria** » Mon Aug 02, 2010 7:23 pm

Tanya,

When I first began taking Entocort, it took 4 weeks for me to see a more solid BM. You are still seeing D and still going 12 times per day, which is excessive, but that's considerably down from 40-50 times per day that you were originally going, as I recall.

Entocort is helping you, but you probably need to give it a couple more weeks. You wrote in another post that you are GF and DF, but you may also have to go soy-free. Hopefully you will get your test results from Enterolab soon so that you know if soy is a problem. I hope it isn't, but half of us have had to eliminate it.

Gloria

harma · Post by **harma** » Tue Aug 03, 2010 7:55 am

Charlotte, so good to hear you are doing so much better. I also had a very quick response on entocort, like you do. What is your dosage? Since you are responding so well, maybe a lower dosage is also sufficient for you. I started with two a day for the first two days, and changed to one a day because of the side effects. It is just an idea.

wonderwoman · Post by **wonderwoman** » Tue Aug 03, 2010 9:54 am

Harma,
I take 3 of the 3mg capsules of Entocort EC a day. I too wondered if I could get by with 2 a day but want to give it a little longer. Then I might drop one every other day for awhile. Yesterday afternoon I had a headache, and I never have headaches. I thought I maybe was hungry so I ate some of my home made chicken with rice soup and went to the swimming pool. I remember saying at the pool that I had a headache but don't think I had one last evening and none this morning.

When I do a Google search on Entocort I come up with Entocort EC and just Entocort. Is there a difference between the two or was the EC just dropped from the name.

Have not had a BM today yet. Last one was yesterday morning about 8:00.

Tanya Lynn · Post by **Tanya Lynn** » Tue Aug 03, 2010 10:14 am

Gloria,

I just wrote on another post to Tex and he was suggesting that I go
SF as well. I have only been GF/DF. I just didn't want to give up my
soy. So, today I will start SF.....

I was going up to 40-50 back last year when I got the flu shot that
put me in the hosptial. This flare up that started about 6 weeks ago,
I was going about 20 times a day. Now, I'm going about half, 8-10 times...
Maybe going SF will be the ticket...

Charlette,

Hope you are still getting better...

Tanya

Post by **tex** » Tue Aug 03, 2010 12:58 pm

Charlotte,

There is only one Entocort. The EC stands for encapsulated, (I guess). All Entocort is encapsulated, with an enteric coating. Without the coating, it is simply budesonide, (the active ingredient). Many people leave off the EC, but technically, it is part of the official name for the product.

Tex

grannyh · Post by **grannyh** » Tue Aug 03, 2010 3:44 pm

I watched what I ate when I started on Entocort... I had a feeling it might work faster if I was careful with not eating things that caused me the most problems. I only added foods I missed after the entocort started to work..and then only sparingly.
grannyh
6 yrs on entocort

Gloria · Post by **Gloria** » Tue Aug 03, 2010 3:48 pm

Grannyh,

Thank you for explaining that. I had the impression that you ate whatever you wanted and Entocort took care of the rest. I thought it really was a miracle drug for you. It's helpful to know that you also had to watch your diet very carefully.

Gloria

wonderwoman · Post by **wonderwoman** » Sun Aug 08, 2010 8:58 am

Monday August 2nd was the last day I reported on my progress with Entocort which I started on Friday July 30. (Computer was in the shop and I was using an Ipod) The good news is I have been having just one NORMAN every morning beginning on the second day of my taking Entocort. This is wonderful considering what I went through since mid May. On the 6th day of taking the RX, I went to 2 Entocort every other day, alternating between 2 and 3 for the last 5 days. And still one Norman a day. This is great because I am back to swimming laps every day without the fear of an accident.

I want to go to 2 RX soon because I don't want to think, Oh, I can add back a bunch of foods and the RX will take care of it. I want to be able to control it with diet and with only a little assist from Entocort. Hopefully this will work.

Oh, and yesterday I added back my multiple vitamin. Will slowly add back my other vitamins and minerals.