Update....still feel icky sicky.

I can see why you're in a Debbie Downer mode, and that's okay! It's funny you named your attitude b/c I do mine as well. I have my Debbie Downer days too...Negative Nancy...and then I force myself to be Happy Hatti b/c I refuse to allow my disease to take control of everthing. I also have Pity Parties for 10 minutes and one a day...I time them. I have clients that like to focus on the negatives in their lives, which normally are not nearly as bad as they feel they are, and I am very strict with them having timed 10 minute parties too. : ) But that's just what I do...I also tell people I'm Negative Nancy that day just to give heads up. : )

Anyway, are you dehydrated? My nurse told me that fatigue and headache are some of the first signs...I get confused and overwhelmed with my symptoms and side effects b/c so much is going on. I started trying to drink more, which does not normally always happen, and then I down Ensure. I know our situations are still very different b/c I haven't had my surgery yet, but our bodies could still be reacting the same way to similar things. But I am so sorry to hear of the blood clot and that would very scary and I wish they could so something about it as of yesterday. However, I started feeling better after drinking Ensure 2-3 times a day and really trying to push the fluid. I'm sorry you are having trouble with consistency and whatnot. I haven't experienced that yet, but I know that Immodium doesn't really work for me either. That was another reason I want to throw in the towel...it used to buy me a few hours of doing something normal, but when it quit working I was like 'why not? If Remicade and prednisone don't work anymore why the heck should Immodium?!' : )

Anyway, it's good to vent and talk about your feelings...journaling is an amazing tool...and that's what's wonderful about online supports such as this is that you journal and get response. : ) So it's hopefully a win-win situation!

I hope you start feeling better soon!!!

: ) Robin

Tapering slowly helps to avoid the terrible side effects associated with Prednisone. I had the hardest time going for 10 mg to 0. It took me several weeks and I actually was shaving a little off of 5 mg pills to decrease it a little at a time. My body just did not start producing it's own steroid-like drug again when I began taking away it's supplement and I went thru horrible withdrawals. I was also taking 60 mg/day orally, steroid suppositories and also steroid enemas prior to this last surgery with no response. (Remicade, Humira didn't exist for me then.) But after surgery, over time I got off of it completely. Keep in mind, my surgery was probably at the lowest point in my health, I was on a lot of pain meds, and on top of that, was having hormone issues.... even tho the Prednisone was a pain, it was manageable once I realized what I needed to do to get off of it. Tapering is necessary for some people to avoid going thru withdrawals which can have flu-like symptoms. It eases the body into producing it's own again too.

Yummy! Potato Buds...I'm learning from you guys what I should try in the future. I happen to adore instant potatoes anyway. : )

Cheese normally causes constipation if consumed in access...do you all find that it can thicken your output or does it just cause blockage?

Thanks for the advice.
I've never been a good drinker and my husband is always lecturing me on it. However, I'll really try to drink more H20. I've laid off the gatorade b/c it was going through me within 2 hrs. So I'm sure it made things worse, even though I needed those electrolytes. Pediasure I do have, but that stuff is NASTY. I have a hard time making my 14 month old drink it. She hates it too. I love ensure! They got me hooked on it while at the hospital. It's so good for you too. I try to drink one a day at least. Good snack.

Robin,
They put me on 40mg of pred with a fast taper after my original surgery (colectomy). My slow pred taper is b/c of my second emergency surgery. B/c I had so many abscesses and so much infection (the result of poor blood flow to stoma/intestine and my intestine started dying and separated from abdomen-causing a leakage into my abdomen), they thought there would be lots of inflammation post-op. They were right which is probably why I got the blood clot.
P.S. I think you're going to do great after your surgery! You have such a great attitude towards everything! And I know you'll feel better.

I have no problems with cheese, or anything really. My ET nurse told me that the thing she notices that causes the most blockages are corn chips and chinese veggies. I do notice that corn chips slow things down. But I can only eat so much, especially since I don't feel like eating. I had a baked potato with ham and cheese for dinner. It didn't hit the spot. I felt sick after dinner too.

Yesterday was lousy, but I hope to have a better day today.
Chassity

Oh I wish Elliott (yes it's a girl) would sleep until 8 a.m. ! She's a 6:30-7 a.m. girl. UGH!
And my Dr. has me taking the pred twice a day, so at her nap time (now) it's kicked in, so I can't nap and at night around 2-3 a.m. it's kicked in so I'm up then too.
It's been hard to keep up with her while recovering from so much. She's such a mommy's girl that she always wants me over everyone, but I have my husband and mom who've been a huge help!
And I know it's going to get better. We actually danced to Barney today (once my pain meds kicked in LOL) and that was fun and exhausting.

I don't know about Pediasure. The Pedialyte that we've tried are the cherry (red) and bubble gum. I can't stand them. BARFO! Is pediasure maybe like ensure, except for kids?

Good thing you're getting the cold b4 surgery, so you'll have a bit of immunity post-op to something like that. B/c coughing hurts more after your muscles are trying to heal!