New Here & Introduction

[tex]

I did notice that my face was flushed kind of red when I got up this morning. Perhaps this a side of effect of the Endocort?

Yes, that is a cardiovascular side effects of budesonide, (the active ingredient in Entocort). Cardiovascular effects can include chest pain, palpitations, tachycardia, dependent edema, face edema, hypertension, flushing, and increased C-reactive protein. Hopefully, you won't experience any of the other possible cardiovascular side effects, but stay alert, and if you experience any of the more significant adverse events in the list, namely, chest pain, heart palpitations, tachycardia, (rapid heartbeat), face edema, (swelling of the face), or high blood pressure, go to the nearest ER immediately, or if the symptoms are just slight, call your doctor.

Please don't let that scare you, because we have only had one member who had a serious cardiovascular event, and that was due to a doctor prescribing too much Prednisone to treat back pain, when the patient was already taking Entocort to treat her MC. IOW, this resulted in an overdose, with very serious consequences. (Her main issue was dangerously erratic blood pressure, and she will probably have to take meds to control her BP for the rest of her life, as a result). That shouldn't be a problem in your case. Entocort can be safely taken at double the normal labeled dose, without any significantly greater risk of side effects, than the regular 9 mg daily dose.

Thanks, I hope you have a great Easter weekend, too.

Tex

[Becky]

I'm not sure how often a colonoscopy is necessary for different cases. My primary (who I love) said I wouldn't need another until I'm 50. I'm 42 now.

[chastecl]

Becky and Tex,

I just read the follow-up letter from my doctor. There was no mention of dietary restrictions so I will keep reading and researching GF diets and ask him about it at my next appointment. Becky, as far as future scheduling of colonoscopys, I am still on the 5 year schedule according to the letter I received. Heavy sigh of relief :)!!! Tex, the red flushing of my face went away after I'd been up for a while. I will keep alert for any of the other symptoms you mentioned.

Carol

[tex]

Carol,

That's good news about the flushing disappearing so soon. Since that symptom went away so promptly, and no other side effects were noticed, it's probably nothing to be concerned about.

Regarding the colonoscopy schedule, an MC diagnosis shouldn't affect your normal colonoscopy schedule, (IOW, unless any polyps were noted, or you have some other increased risk factor, it should remain at 5 years.) Doctor's usually assume that after treatment, the colonic histology, (pathological condition of the cells of the epithelia, in the colon), of MC patients, will return to normal, and they will, so long as all symptoms disappear, so GI docs don't normally do a followup colonoscopy for MC.

Regarding the diet, if you intend to remain on a maintenance dose of Entocort, indefinitely, your fast response time suggests that you would not need to change your diet. IOW, a maintenance dose of Entocort would probably completely control your symptoms, indefinitely. If you plan to completely stop taking Entocort some day, though, (or your doctor intends for you to do that), you will discover that a few weeks after the Entocort is discontinued, your symptoms will return, unless you have removed gluten, (and any other food intolerances that you might have), from your diet, and your gut has had sufficient time to heal, (usually about 6 months or longer).

That rule isn't chiseled in stone, but it seems to be true for about 99% of the members here who control their symptoms with Entocort. Since your doctor didn't recommend any dietary changes, I'm pretty sure that he will argue that you would be wasting your time, to alter your diet, because there is no connection between diet and MC, (at least that's true in his mind - no reflection on him, that's just the way that he was trained in med school).

Tex

[angy]

welcome carol



sorry you have been dx with cc...i understand your frustrations and you may feel desperate to research the condition. I was dx with cc in june 2008 and the docs couldnt tell me anything about it apart from put me on mesalazine. Shortly after my dx i found this site and the help and support i received was wonderful...so many people here who are real sufferers and have all been to hell and back. I learned more within one week from the caring people here (especially tex) than i did in months from any doctors.

I have also found everyone here to be so understanding more so than any one i know in my real living life...even families have no clue to as how you feel even though they try to understand. Without this great family i would have been climbing the walls...

Theres so much information here and a wealth of knowledge to discover....also you gotta check out dees kitchen...god i wish i lived with her lol!!:lol:

good luck with the tests,docs and everything else...i suggest eat gluten free..it has helped me hugely...i have even cut down my own medication to 1000mg a day( it was 3000mg to start) and i feel this has been due to diet...I have tried to eat gluten stuff just to test the symptoms and bingo i get all the bad gut stuff..now i have become so strict with my diet im determined i aint gonna let that evil gluten get me
i wish you the best of luck in your recovery and look forward to reading your posts...

[chastecl]

Angy,

Thanks for the warm welcome! The concept and implication of being diagnosed with CC is still pretty new to me. I had never heard of CC or Entocort prior to this week :) At this point, I have no idea if I will be continuing with a maintenance prescription for Entocort after the six weeks course and that will be one of my first questions to my doctor when I meet with him at the end of the 6 weeks. So far, I've enjoyed a big improvement in just 3 days. Other than some minor facial flushing one morning, there has been no indication of sensitivity to Entocort so far. But, I'll keep my guard up just in case sensitivity develops later on. I have not yet decided whether to try going GF. I will probably wait to see if my diarrhea returns first. I suspect it will but I still want to wait and see. I probably will bring up the GF treatment option with my doctor just to see where he stands. My clinic is a Mayo affiliate so perhaps he may be somewhat informed on the subject. In the meantime, I've been reading about the benefits of going on a GF diet and since I love to cook and collect recipes, I will definitely be checking out Dee's Kitchen :)

Carol