Entocort / Update

[WendyM]

So I have been on the Entocort for a little over a week now and am feeling so much better than when I was taking the Asacol. My GI wants me to take both, but with as terrible as I felt on the Asacol I am very hesitant to put it back into my system. Not sure what the problem was - some have mentioned lactose....I have been drinking lots of milk the last few days and feeling fine. ANy thoughts? Do I need both, or is the Entocort sufficient?

In fact, and I feel compelled to share this.... I had a totally normal BM last night and almost woke my Hubby up to share the news with him

I did have a follow-up with the GI last week to review my biopsy results (which I had already read online). He said that about 15% of Celiacs have MC, and as many as 40% of MC have CD.... Not sure how that math works out, but that is what he said. He said no one is exactly sure what triggers the MC, but it is manageable. He didn't really talk too much about diet - so I asked about gluten and he agreed that it would probably help, but was a mute point since I had to do it for the Celiac anyway. (He said it much nicer than I just typed it). Basically no suprises from the visit. Wants to see me mid-summer for a follow-up.

I'd like to say that I feel about 60-70% better, but the reality is that I don't remember what "normal" is like. Energy level is much better, and I'm getting used to the whole GF thing....in fact I made some killer chocolate chip cookies tonight that my boys are inhaling. My next goal is to get off the antidepressent, and then I think I will feel as if I am pretty much back to being me.

Thanks for all the help!

[tex]

In fact, and I feel compelled to share this.... I had a totally normal BM last night and almost woke my Hubby up to share the news with him

Your hubby might not have appreciated being awakened to hear that news, but I can guarantee that all of us know how you felt about it. It's a great relief, isn't it. Congratulations!

I don't see any reason to take two meds to do the same job. If Asacol is so great, why did he prescribe Entocort? If Asacol makes you feel bad, why take it? The Entocort is obviously getting the job done. Remember, your GI doc is working for you - you're paying him, he's not paying you. Don't do anything you don't feel is right - it's your body, after all, and taking care of it is ultimately your responsibility. Some people are just intolerant of certain medications - and they get sick, if they take them. Some members here have become sick from taking Entocort. We're all different.

As the days and weeks pass, and the diet begins to take effect, and your intestines heal, you should feel better and better. Thanks for posting the good news.

Tex

[Gloria]

Wendy,
I'm so glad that Entocort is working for you and your life is getting back to normal. I've never used Asacol; I've found that Entocort along with diet have worked fine for me.

Gloria

[starfire]

That is really wonderful news and I'm so happy for you. Looking forward to more posts as you continue to heal.

Love, Shirley

[Dee]

Great News, Wendy!!!
I remember when I had months & months of D that I kept saying that if I ever did have a normal Bm, that I was going to frame it!!!! So, your comment about you want to wake your hubby up, gave me a chuckle!
I totally agree with Tex about the Asacol. If you are doing fine on the Entocort, there is no way that I would add the Asacol back into the mix!!!!
Keep us posted...

Dee~~~~~

[Stinky]

Hi Wendy!

I'm brand new on here - haven't even tried any meds yet (and frankly, don't really want to because I'm scared of steroids and anti-inflam's) - so I'm just kind of waiting and watching with small diet changes and Imodium only at night. I've gone from D over 10 times per day down to about 6. Sounds like from reading alot of posts on here tho, that folks have had good luck with Entocort - so I guess if I don't get better or start to get worse, I'll join the bandwagon - actually, that's the very first thing my GI wanted to put me on once he diagnosed me with CC.

Anyway, I just had to laugh at your remark about having a normal stool! It's been about three months for me and understand, I used to pride myself on my twice a day, very healthy eliminating habits. It'd sound awful to anyone outside of here but my gut was so very healthy. It was a shocker to me that this just started clear out of the blue one day - healthy me! As it went on for a month, then longer and longer and longer - depression started to set in. I'm a single mom and it was already difficult to have any life outside of home - well now, impossible almost. I try to deal with this in a humorous fashion whenever I can and one day as I was walking my best friend (dog) I just stared in envy as he squatted and hunched over to poop - thinking "man, you don't know how lucky you are to be able to make something solid!" NEVER in my life did I EVER think I'd be so consumed by what's in the pot - I tell everyone to not take for granted the simplist things - even going to the bathroom!

Good luck with your therapy!

[Polly]

Hi Wendy!

Progress at last! Congrats on your normal BM. Ta Daaaa!

Asacol did nothing for me, and I agree with those saying that you can probably stop it.

Be careful about the dairy.......the Entocort will lessen/stop your reactions to foods while you are on it. (It decreases the inflammatory response to any offenders you ingest). And dairy is the second most common intolerance around here after gluten.

Energy was the last to return for me - it took almost 2 years before I realized I had my old energy back.

Anyway, keep up the good work!!!

Love,

Polly


Hi Stinky and !

Stinky.....what an appropriate MC name! HAH!

I enjoyed your post. You do have a sense of humor! However, I thought you'd be interested to know that I know of a poodle with MC! I was walking my dog one day and met up with a lady who told me her poodle was on Entocort for MC. Can you believe it? Poor dog.....at least we can run for the tolet when the urge strikes, but the dog depends upon us to let it out. So you see, there are worse things than being a single mom with MC - you could also have a dog with MC. LOL!

Seriously, how are you coping? MC can be such an isolating disease. Even with a partner or supportive family or good friends, it becomes tiresome and embarrassing to share the messy details of our illness.

Love,

Polly

[Stinky]

Hi Polly and thanks for the msg!

Wow! That would be awful to have a dog with this - I know poor dog - but can you imagine what your house would look and smell like?? What'd the vet do - a colonoscopy on the poor poodle? Ok so that would be worse - much!

What do I do to cope? Well, I guess what everyone else does - just the best they can. I'm usually the Pollyanna (sorry to use half your name) and look for the good in whatever comes - have to admit it's been pretty hard to find one good thing about CC - BUT, I'd never have found this site without it and so far it seems like people on here are so wonderfully nice - and you can always find someone much worse off then yourself - so day by day you take it. It is hard - and it is isolating like you say that's why it was so cool to get a response right after I'd left my first message on here yesterday - made me feel really good - like I'd just hooked into a huge support group. Take Care!!!

[JoAnn]

Hi Wendy and Stinky, welcome to the site. I joined last Dec. I too was hesitant about entocort, but it has been wonderful for me. No side effects, except good ones like getting my energy back. I've been on it a little over 2 months and with the advice from the veterans here, I think I'll stay on it for 6 months and then start tapering. I changed my diet and am still fiddling with that, but it has really helped too. Good luck on your journey, JoAnn