What should my expectations be??

I had a double dose of remicade last Thursday. I felt a boost the first couple of days after. My body wasn't so tired and I had more energy.

My symptoms are a little back and forth. Going any where from 2-5 times. No real blood just random barely pink on tp. Mucus seems to be going away slowly. Minor cramping only before I go.

What should my expectations be on healing and if the the remicade is working? A couple of weeks? Its crazy to think it would be immediate right?

Everytime I use Rowasa my symptoms the next day seem to be worse so I think I need to stop using it. I don't know how I feel about not using rectals but every time I use them (any of them) things get really irritated. Are they even needed with the remicade?

I'm still on Uceris but was hoping to start to taper it...not sure its doing much. I see my GI this afternoon to discuss everything but wanted input from the people that actually live with this disease.

Thanks iPoop. I know I am really impatient. I've had this mild patch of inflammation for 3 months now and nothing seems to be helping it heal. I thought I caught it early enough in the beginning but that's not the case.

I just don't want to give up on Remicade. I responded so well at first. I guess it's going to take time and most likely a few more infusions.

I just worry that if Remicade doesn't help where I am going to next? I do not want to jump around on biologics. I am the worst person ever to have this disease...so type A...so wanting to be in control. Humbling is the only word I can attach to this flare.

Thanks Judy2. I definitely know my type A, neurotic, perfectionism leads to anxiety and then multiple poops lol.

I see you have been on Remi for almost a decade. Have you ever had a flare while on it? If so did Remicade get you back on track?

Thanks NSSG - I hope its a short time til things settle out too! Patience is not my friend and of course I'm worried.

Thanks Alice22 - after your bumped up dose how long did it take before you felt back to normal?

I have been mildly flaring since July. Started after my 5th infusion. My 6th at standard dose kept me stable with no progression or regression of the flare. Just had my 7th and the dosage was doubled.

I've been using enemas, a quick burst of prednisone and uceris during this time to keep things under control. Since it started nothing has gotten worse or better. I'm hoping this double dose does the trick. I just wasn't sure where my expectations should be on how quickly it should work. Days? Weeks?

PS - I am post partum by 6 months and just finished breastfeeding. I know my UC is affected by my hormones so they are playing some role.

Saw my GI. To start I have oral thrush. Noticed the white bumps in my mouth on the way to the GI. 5 days of diflucan...anything I should worry about UC wise with this one?

He thinks I need to add more fiber to my diet to bulk the stool. He also thinks there is an IBS connection especially because of the stress I put myself under.

I was told I could stop rectals and see how my body handles it. I will start tapering Uceris this week as well. He thinks I will start feeling better in the next week or so as the Remicade does its job and my body starts to heal. He thinks my hormones are a big role in all of this. He prescribed bentyl 10 mg twice a day.

@Alice22 - I keep a pretty strict bland diet. I can not find any food correlations. I don't eat dairy since I'm lactose. I stay away from raw veggies, soy, corn anything. I make fruit smoothies. Chicken, eggs, salmon, white rice...anything soft on the gut. I should start a food journal to see if there is something I am missing...sometimes I wonder about peanut butter and marinara sauce/tomatoes.

I can't do Imuran because 6mp messed with my liver.

Hi Totes!

Glad to hear that you're stable. I do think you're expecting to recover too quickly. You should measure progress by the week, not by the day, and also remember that staying the same is good! I've always found that when I'm in a flare, I get steadily worse. So being stable is a good sign. Your body needs time to heal.

Consider every day without more mucus, more blood, or more urgency a good one.

As you know, I suspect the hormones. Hormonal shifts after pregnancy and breastfeeding take some time to resolve. Again, all you should worry about is not getting worse.

FYI - I've had oral thrush several times and have always refused to do Diflucan because I tend to be allergic to meds, and consistently terrified of the med affecting my UC. Instead, I use an RX mouth rinse and it's always gotten rid of the thrush. You may want to consider trying the mouth rinse, first. Fewer possibilities of systemic effects. Of course, Diflucan may not be a problem for you at all - just something to think about.

Definitely stop the mesalamine enemas and see what happens. As you taper off the Uceris, you could try cortenemas. They can be a good bridge off steroids.

Finally, let us know when you start the curcumin. I think you should try it a few days after you're off the mesalamine enemas.

Most important, try to relax and enjoy your kids. It's fall and Halloween-time. If you think you're healthy enough to go trick-or-treating, you're doing well! I was flaring exactly two years ago and could manage only two blocks of trick-or-treating with my little guy but I was back to 100% normal by January 1st (thanks to curcumin). With the Remicade, you could be 100% by Thanksgiving!

Well when it rains it pours. Hopefully this is a good perfect storm.

I had my double dose of remicade last Thursday. Quit breastfeeding last Thursday. Today I got my period. Here's to hoping that there is a stabilization in my hormones and this flare will finally be kicked!!!!!!

Thanks momto2boys! I'm actually hanging in there pretty well. But usually I feel the worst the 2nd day of my period so who know what tomorrow will bring. I'm hoping my period coming explains the ups and downs in frequency.

I am grateful that the stomach pain seems to be gone and cramping before a bm is on its way out. This has been quite a ride.