Steroids Kicking In!

Leah · Post by **Leah** » Thu Aug 09, 2012 6:36 pm

Unfortunately Ann, your symptoms will most likely come screaming back when You get off Entocort if you don't take the offending ( inflammation maker) foods out of your diet. Most doctors won't let you stay on it forever ( and I don't know if you'd want to), so this is a good time to work on your diet so you can eventually work your way off Entocort.

Leah

Mim18 · Post by **Mim18** » Thu Aug 09, 2012 8:45 pm

Tex,

I guess I am one that continues to react, even while on budesonide. This thread had many comments on caffeine. I am still having my black coffee. It does appear that it is one more thing that I need to eliminate. That is going to be very hard to do. I currently have 3 cups a day. I will try to do a gradual cut back on that. It is just depressing, that after eliminating lactose, gluten, and soy, that I need to eliminate more.

Marion

Leah · Post by **Leah** » Thu Aug 09, 2012 8:59 pm

Marion, I know what you mean about coffee. I noticed it was giving me problems even before my Dx. So I went to black tea. Right before my dx of MC, I noticed the tea was starting to also give me problems. Gone. Now, I am down to certain herbal teas ( camomille, and mint). It's not the same. I miss coffee and black tea immensely. Don't forget to do it gradually so you don't get headaches.
Leah

Post by **tex** » Thu Aug 09, 2012 9:31 pm

Marion,

Actually, most of us don't have a problem with coffee/caffeine (though obviously a few of us do) unless it was a problem before we developed MC. Though most doctors (incorrectly, IMO) advise against drinking it, research shows that there is no valid medical reason not to drink it, unless we have certain blood sugar issues (caffeine stimulates glucose uptake in the small intestine). The only research report that I've been able to locate on this topic compared the use of water, sports drink, and sports drink with caffeine (rather than coffee), but the implications should be similar.

There were no significant differences between the three drinks for gastric pH and reflux during the preexercise, the cycling, and the postexercise episode, respectively. Gastric emptying, orocecal transit time, and intestinal permeability showed no significant differences between the three trials.

http://jap.physiology.org/content/89/3/1079.full

Tex

Mim18 · Post by **Mim18** » Fri Aug 10, 2012 8:41 pm

TEX, THANK YOU, THANK YOU!

I really do NOT want to give up my coffee. I have no issues with blood sugar. It is just that my system is NOT "perfect" yet. It may never be. So for now I shall continue drinking coffee. I may change my opinion after I end my course of budesonide (2 1/2 weeks away).

Marion

fatbuster205 · Post by **fatbuster205** » Mon Aug 13, 2012 2:14 pm

I was advised to stop caffeine because of the dehydrating effect it has - in addition I have to drink a minimum of 2 litres water a day! This was because of impaction - two episodes in as many months. I am getting used to decaffeinated tea and coffee although I need to try and get a decent brand of filter coffee because what I have is rank! LOL!

Leah · Post by **Leah** » Mon Aug 13, 2012 3:18 pm

Do you have PEIE'S COFFEE in your area? They have the best decaf coffee.
Leah

fatbuster205 · Post by **fatbuster205** » Thu Sep 13, 2012 12:26 pm

Another quick update - definitely in control now, although still between 1 and 3 large but normal (types 2,3 or 4 BSC) BMs every day. Feeling so much better, although I am having to handle fatigue by ensuring at least 2 nights a week in bed by 9pm! If I do that I can get through the week and function normally! Still on 9mg budesonide - I see my GP in 2 weeks for monitoring. Have had very mild cramping in the hands and feet but nothing like the first time I took this medication so I seem to be able to tolerate it better. Haven't put weight on but my face is puffy particularly under the chin and eyes - hopefully that will go once the dosage gets reduced. Overall I am so much better than a few months back but I am really determined the more I read (I have read your book twice through now as I still have to get used to some of the long words!!! LOL!) to look at diet. I am looking forward to seeing the consultant and having a really long chat!!! I have so much more evidence to bring to him, even though a lot is anecdotal. But I think I have doctors willing to listen and they may be interested in my proposal to try an elimination diet. We will see!!!
Anne

Zizzle · Post by **Zizzle** » Thu Sep 13, 2012 12:37 pm

Marion,

It is just depressing, that after eliminating lactose, gluten, and soy, that I need to eliminate more.

If you haven't eliminated casein yet (milk protein), I would try that before you feel you have to eliminate coffee. I know, depressing, but it's a huge irritant for most MCers.

Leah · Post by **Leah** » Thu Sep 13, 2012 4:04 pm

Great news Anne! So glad you are feeling better! I think you know what we are all going to say about diet. It is the very key to getting this disease under control. The Budesonide is temporary. You probably will go right back to where you started when your doctor takes you off the meds. Now is a great time to at least go GF .
Good luck
Leah

Gloria · Post by **Gloria** » Thu Sep 13, 2012 6:58 pm

Anne,

It's terrific that you're able to tolerate Entocort this time and it has helped you.

Anne wrote:But I think I have doctors willing to listen and they may be interested in my proposal to try an elimination diet.

You don't need your doctor's permission to change your diet. They will likely tell you that diet has nothing to do with MC, but we all know better. Most of us get our script from our doctors and go about resolving our MC issues on our own by modifying our diet. It's nice, but not necessary to have the approval of our doctors.

Gloria

Lesley · Post by **Lesley** » Thu Sep 13, 2012 8:28 pm

I can reiterate that. I have a different problem so entecort made me even more constipated. But my docs reaction to my diet proposals was
"it can't do you any harm, but it won't help".

I did it anyway.

cjbndtsn · Post by **cjbndtsn** » Thu Sep 13, 2012 8:41 pm

Yep I have to agree.....I saw no relief until I went GF. When I told the GI that she flat out said that has nothing to do with it. I did not test pos for Gluten allergies. She said it won't make a difference what I eat. WRONG..........I can attest that my MC wouldn't even slow down until I eliminated gluten. I went from 12-15 times a day to 2 maybe 3 at the most. Then after 2 weeks of that I finally got Entocort and (knock on wood) I have been normal since with the exception of getting glutened accidently one time. This forum of folks are the ones that lead me to give up gluten.........I trust them with my life now.
Hang in there and guess what..............gluten free really hasn't been all that bad to do. I have some friends (with no medical issues) that are doing it with me because they read how many people are doing so much better. Check out Dee's recipes on here. OMG I have fixed several of them and they are better than what I was eating. lol