Steroids Kicking In!

fatbuster205 · Post by **fatbuster205** » Sun Jul 22, 2012 6:16 am

I am so happy to report that the Prednisolone is kicking in and I am starting to feel so much better. I also think the impaction has cleared - pain has eased - so I am going to cut back on the Movicol too. But the best is the energy surge - I have already done an hour's gardening!!

carolm · Post by **carolm** » Sun Jul 22, 2012 7:25 pm

It's great that you are feeling better and up to doing a favorite activity. Just the mental and emotional boost we get from that can keep us going.
Hang in there.
Carol

fatbuster205 · Post by **fatbuster205** » Mon Jul 23, 2012 1:37 pm

Thanks Carol!
Definitely feeling a lot better, although having a slight withdrawal from caffeine so having to add in the odd cup of normal tea rather than decaf! The consultant did say I could if needed for a week or two! But I feel better today than I have felt in about 3 months and that is such a good feeling! I also had a great walk earlier and then made a great dinner so I am feeling pretty chilled!
Anne

coryhub · Post by **coryhub** » Mon Jul 23, 2012 2:49 pm

Hi Ann,
I feel for you kicking caffeine. I had the hardest time learning to love green tea. Now I find it tolerable. I also have an occasional decaf iced coffee. Thanks for sharing your good news.

Cory :smilejumpinginenvelope:

Leah · Post by **Leah** » Mon Jul 23, 2012 4:48 pm

always great to hear good news . :)

humbird753 · Post by **humbird753** » Tue Jul 24, 2012 7:21 pm

Anne - that is great news. I hope you continue to feel this good.

Paula

fatbuster205 · Post by **fatbuster205** » Mon Jul 30, 2012 9:16 pm

Quick update - switch to Budesonide today after 2 weeks on Presnisolone. I am feeling so much better and that is despite it being 4:00am and I am up! But I know the imsomina is temporary. Other than slightly odd muscle sensation in my hands (no cramps) I am not experiencing adverse side effects - in fact I have made the most of having tonnes of energy - my garden is really tidied now! I am going to go do some ironing now as sleep is just not happening and I might as well make the most of it. There is nothing worse than lying in bed, tossing and turning! I have a check up with my GP tomorrow and I hope to be able to come off the Movicol - I just hope that I don't get another impaction! However, I feel I am winning and am almost a caffeine free zone now - just one cup of regular tea a day and no coffee. My head is no longer fuzzy and as I say I am feeling so much better!!
Hope all is well with you all!
Anne

Leah · Post by **Leah** » Mon Jul 30, 2012 9:37 pm

Great news! Hope you continue on this path. Thanks for the update.

Leah

Christine. · Post by **Christine.** » Mon Jul 30, 2012 11:06 pm

I can hear the joy in your words! So happy you are on the path to feeling well.
Christine

fatbuster205 · Post by **fatbuster205** » Tue Aug 07, 2012 2:01 pm

One quick question! The D has stopped and I am starting to have "normal" BMs although I am still going quite a bit, maybe 5 or 6 times a day. That said today only 2! Does it normally take a couple of weeks for things to settle down?
Anne

Leah · Post by **Leah** » Tue Aug 07, 2012 2:52 pm

Everyone is different. I'm happy for you that this is working so well! My BM count went down very quickly, but they weren't ( and still aren't) always solid. Just remember if you start to feel a little constipated, then that is a sure sign that's it's time to lower your dosage ... SLOWLY. Keep us posted

Leah

fatbuster205 · Post by **fatbuster205** » Wed Aug 08, 2012 3:13 pm

Thanks Leah and I will keep you all updated. But it is so great just to feel so much better! I have so much energy at the moment and the weather has turned nice so I am enjoying getting out and exercising - I try and walk 4-6 miles a day - gut allowing - so I have some catching up to do now that I am able to get out again. Here is keeping everything crossed that I continue improving!!! Next appointment with the GP is 23 August!

Lesley · Post by **Lesley** » Wed Aug 08, 2012 10:42 pm

I don't (can't) walk like you do, but I do try an walk almost daily, When I was in a flare I had an attack in the middle of the walk, and had D running down my legs. I had to hide behind a car and let someone go up in the elevator so I wouldn't stink him out. VERY embarrassing.
Since then I wear a depends when I walk so it will at least prevent the D running down my legs. The smell? I plan to look around and say "where's THAT coming from?" if it happens again.
It hasn't so far!

fatbuster205 · Post by **fatbuster205** » Thu Aug 09, 2012 2:20 pm

OMG Lesley - that must have been awful!! I always carry tissues with me as a precaution and have identified suitable "bushes" that I can leap behind if necessary. So far I have not had a problem that I haven't been able to handle discretely! I am just so relieved to be getting back to some semblance of normality again - well better than that. Obviously there are still more questions than answers but the problem with this disease is how indescribably ill you feel and it is only when you do feel better you realise just how bad you have been feeling! At least I am in the fortunate position of having sympathetic doctors - both GP and Consultant - who are prepared to listen! And the big issue is going to be what has triggered it - in all likelihood gluten etc - and therefore going GF! The weird thing still buzzing in my head is that now I am on budesonide I can eat all and everything except caffeine which I was advised to give up and I have.
So a new question - if you are gluten sensitive, haven't yet gone GF, do you still respond to budesonide even if you continue to eat it? Because I am responding really well now but am continuing a normal healthy diet with fruit, veg, salads and bread, pasta etc. In other words other than giving up caffeine I have not changed my diet yet. I have agreed to work with my doctors on this!! If I am gluten sensitive would I respond as well? BTW today is a celebratory day because I have had just one totally normal BM!! JUST ONE!!!!

Who would have thought such a non-event would cause such joy in my life!!!!

Anne

Post by **tex** » Thu Aug 09, 2012 3:17 pm

Anne wrote:So a new question - if you are gluten sensitive, haven't yet gone GF, do you still respond to budesonide even if you continue to eat it?

Yes, some people are able to do that, and that's why many doctors believe that budesonide can "cure" MC. For many of us, though, we continue to react even while taking Entocort, until we remove the offending foods from our diet. We all respond differently to the various drugs.

Anne wrote:normal BM!! JUST ONE!!!! Who would have thought such a non-event would cause such joy in my life!!!!

Congratulations! Yep, this disease teaches us to appreciate the finer things in life.

"Normal" people don't know what they're missing because they take such things for granted.

Tex