My Remicade Update…Able to Drink a Cup of Coffee! I can’t believe It

Hi everyone! ok it has been almost 2 weeks now since 1st Remicade infusion. I splurged and had Starbucks soy latte!  The devil right? not this time, it tasted soooooo good and did not have me running to bathroom, so I have been drinking a small one, just 1 a day for past 5 days and no running to bathroom at all! :)

It has been good so far for my gut. I am having normal once a day bathroom trips like a normal person for the past 5 days and no abdominal pain at all, except for yesterday I had a little bit of pain and had to run to the bathroom and was stuck in there for a half hour. That was after working my usual 12 hour night shift, which was kinda busy and then I had to meet with a guidance counselor at my son’s school and stop by the doctor office to do get some paperwork approved for FMLA stuff. It was going on 9:00 am  and my body felt like it was hit by a Mac truck! I feel that this one time incidence of urgency and pain with diarrhea was directly correlated to being up way too long (over 18 hours) along with stress of too many things to get done on a time schedule right after working all night. During my 12 hour shift I ate a Lean Cuisine meal (which I haven’t done in months) and a big cup of hot cocoa at the end of my shift.  I also snacked on some homemade healthy carrot cake that I make a lot, and I ate some Whoppers (lol, I love Whoppers) so maybe too much sweets that night too.  Sometimes it is hard to eat well at work during a busy night.  Also I do not drink coffee at work at all, don’t want to risk it, lol.

Other than that one morning episode (which happened at GI office while getting paperwork, how convenient lol) nice bathroom :)  I have felt good in the gut.

Cons….I still have some wicked joint pain. I have not taken Advil at all since last post. I have constant runny nose but not real bad, just need tissues no meds.I have also had a continuous dull headache for the past week. I thought maybe I was dehydrated but I drank a ton of water and still headache lingers.

New symptom this week….TIRED TIRED TIRED!!  Those who know me know I am not a tired person! I am running all the time! Well I am sleeping on average this week over 10 hours a night, and still fatigued. I usually go to gym at least every other day. I am still doing that and it feels good and helps my joints a lot, but next day the hurt is back and I’m fatigued. I went to bed at 11pm last night and I am still sitting in bed right now and it is almost noon! My elbows are on fire and so are my hips.

MY 2nd infusion is tomorrow morning, so I will pick their brains a little regarding joint pain remedies and the headache thing.

My diet is varied lately, some of my favorite things are strawberry Eggo waffles with natural peanut butter and strawberry preserves for snack. I eat eggs almost every day 2 eggs (cage free, organic) scrambled with 1 piece of whole grain toast.

I am hooked on burritos lately. I know what you’re thinking….but no, they don’t bother me much. I made homemade burritos last night all natural ingredients. Sun dried tomato tortillas and vegetarian re-fried beans (small amount), fresh avocado, chopped organic tomatoes, onions, fresh cilantro, sour cream, and rice with freshly squeezed lime. They are so good! Lots of protein..over 20 grams for 1 burrito.

I drink Muscle Milk a lot too. They have a lot of protein and low carbs, non dairy for those of you who don’t do dairy. I love them! They are packed with vitamins and protein. I think they are better than the competition out there.

I drink performance drinks at the gym. Heed is a good one. REI sells it. These supplements are pricey but are well worth the added cost.

Some of my fiends with Ulcerative Colitis say that they can’t do high amounts of protein and that it brings on a flare. With me it is carbs, bad carbs. I am active in the gym and do strength training as well so I need the protein, it works fine with my body.

I stay away from fast food.  All of it!  It is not good. If I have one bite of fast food of any kind (hamburger, chicken tenders, fries, etc,) it is almost an instant gut pain. Fast food and UC don’t go together. If any of you are eating fast food and still wondering why you feel like shit, just delete it now from your life! There is nothing good about it, I promise you that!

Take care everyone and have an awesome day!

Liz :)


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2 thoughts on “My Remicade Update…Able to Drink a Cup of Coffee! I can’t believe It”

  1. Hi Nurse Liz,

    Thank yo so much for the update on your progress. I really hope you see some continued success with the treatments!
    And also, hopefully the tiredness gets better soon. I was going to say maybe some anemia stuff, but I’m guessing you probably already had tests for that. For me, one time I was extremely tired, and after a blood test, it came back that I was very anemic, so the doctor had me pop some iron pills and that seemed to do the trick.. take care, adam

  2. Liz,

    I am glad to hear you are feeling better but have learned not to push it with respect to diet. Please do not take offense to this, but your diet does not sound that great for UC. Dairy and soy can wreak havoc on UC. Beans on a regular basis are not great either. I understand and miss not being able to eat many of the foods I used to enjoy but I figured out options that are enjoyable and this keeps me off hard core UC drugs.

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