The Good, Bad, and Ugly

nerdhume · Post by **nerdhume** » Tue Jun 03, 2014 4:23 am

Stopped the Uceris on the 1st.

The Good....Day 1 seemed ok. Day 2, yesterday, I felt a little nauseous and had very little appetite, which might be good as Uceris caused me to be hungry all the time and I had gained back most of the weight I lost.

The bad...I felt really tired all day yesterday and spent most of the day in my recliner cross stitching.

The ugly... today began at 4 am with WD.

Not sure what to do now. Take Imodium? Wait and see? Call GI?

Chrisdat · Post by **Chrisdat** » Tue Jun 03, 2014 4:41 am

Nerdhume,

What did you eat and drink since stopping Uceris?

Chris

nerdhume · Post by **nerdhume** » Wed Jun 04, 2014 4:10 am

I replied to this yesterday, not sure where it went. I have been EF DF GF SF and basically ate meat and well cooked veggies, banana, avocado, & cantaloupe.
The one episode of WD was all there was other than small amounts of mucous.
Anyway, yesterday I felt totally wiped out and nauseous all day. Spent most of the day in bed and only ate/drank because I know I must.
Coffee, hashbrowns & ham, homemade chicken soup (previously frozen), ricecake, gingerale, water kefir, banana
This morning I am feeling some better, slept well and no more episodes so far.
I really believe this is withdrawal from the Uceris, no matter how much they would like us to believe that it doesn't get into the bloodstream.

Leah · Post by **Leah** » Wed Jun 04, 2014 5:00 pm

It's very possible that you are withdrawing. Try to hang in there with the safest foods you know of. The Uceris could have been masking some food intolerances, so be careful. ANY melon will still send me running to the toilet ! Once you feel stable, test each food back in for three days before deeming it "safe". Good luck. Hope you feel better soon.
Leah

janet · Post by **janet** » Wed Jun 04, 2014 7:13 pm

I would say, sit in your recliner, have a nice read, do some cross stitching, have some one make you a warm drink.
Think nice thoughts, like you are GOING to be better.
I dont trust GI Drs anymore.
I went off him.
I will be thinking of you enjoying yourself.
Im wishing you well and saying a prayer for you.

meant sincerely
Marie

UkuleleLady · Post by **UkuleleLady** » Wed Jun 04, 2014 8:41 pm

Hi Nerdhume,

I'm sorry the D hit at 4am. It could be the cantaloupe, as Leah says.

How long were you on Uceris? Is that the same as budesonide? I stayed on it for more than four months before weaning. Total time was almost six months. I really needed that edge to heal before the diet kicked in. That said, every time I reduced my dose I had symptoms. Eventually it leveled out.

I can eat more fruit and veggies now but it's taken about a year. I sometimes have a bad day. When I do, I focus on eating mostly meats, and I skip my banana, nuts, avocado, etc.

Wishing you health,

Nancy

Heady · Post by **Heady** » Wed Jun 04, 2014 8:51 pm

Leah is soo right... Keep it basic...go slow... It's not a race, it's all about progress!
My best wishes for a future of Normans!

nerdhume · Post by **nerdhume** » Thu Jun 05, 2014 2:48 am

Thanks for all the encouragement, it's really helpful when going through a rough patch.
I was on the Uceris for 3 months, 9 mg.
I felt a lot better yesterday, no D, just fatigue. This morning I feel almost back to normal (and normans) other than waking up early and not being able to go back to sleep. Laying around all day and napping interferes with my nighttime sleep.
Still have NO appetite, just forced some food down yesterday because I know it's a must. I have been scrambling some diced ham and frozen hashbrowns together for breakfast lately. I had that for breakfast and dinner yesterday. Had homemade chicken soup for lunch and a rice cake. coffee, water kefir, gingerale and a banana.
Will stick to the simple plan until it seems safe to add something else.

Chrisdat · Post by **Chrisdat** » Thu Jun 05, 2014 3:44 am

Nerdhume,

Wishing you good health as you stop the Ucercis. I am very curious about your progress and was asking what you eat, because ending medication for MC, is something we all aspire too. Please keep updating your progress as you go along. It is so helpful to have a window into the potential future, and see how others have done it, good, bad and bumps along the road.

Best to you,
Chris

nerdhume · Post by **nerdhume** » Thu Jun 05, 2014 4:40 am

Chrisdat
I am hopeful that I am in remission. The Uceris was a lifesaver for me. It stopped the WD immediately and helped me while I sorted out my diet with enterolab. A few days of withdrawal are nothing in the long term scheme of things.
I began on lots of prescription meds, for pain, etc. Now the only one I am still on is Nortriptilyn, antispasmodic that I take at bedtime. I will continue it until I see my GI on the 12th. I also am still taking the probiotic VSL #3.
I truly believe the right diet is the key, and we each must find our own. The enterolab and Uceris just helped to speed up the process.
I know there is no cure for us, and we will have relapses, I am just taking it one day at a time.