Possible Flaring?

[bwightman]

I'm not quite sure what's going on with me at the moment...I've only been diagnosed with Crohn's since the end of April, and felt great while I was on the Prednisone, which ended right before July 4. Since then I've been getting more and more fatigued it seems. But also...is it possible to be in a flare up situation and have [quasi] normal bowel movements?

All of my other symptoms seem to indicate a flare: extreme fatigue, fever/chills, night sweats, loss of appetite, sometimes nausea. My stomach feels ok for the most part...a little crampy particularly after eating, but not painful like it was during my first flare/initial diagnosis. I'm only having 3-4 BMs a day. Been on Pentasa 4MG/day for about two weeks, prior to that I was on Asacol, 1600mg/4x a day. But then again, this is a new diagnosis and may be my first flare since coming of the Pred....I'm not sure what to expect!

Has anyone else experienced this? Right now I am FREEZING COLD and feel like if I just laid down under my desk here at work I could sleep for a week (and I slept through basically the entire weekend!)!

Help!

 

[teeny5]

Sounds like a flare to me.

 

[Babe123]

definatly sounds like a flare

i know what you mean about being freezing cold. i am freezing.. and then ill suddenly go hot all of a sudden and then back to being cold again. i wake up tired..which i didnt think was possible... its a pain in the backside!
xx

 

[bwightman]

Well, I just got back from an appointment with my GP (one that has been scheduled for a few months). I described to her all of my symptoms and she and my GI put their heads together and decided to do a bunch of bloodwork, a possible CT scan, and put me back on Prednisone 60mg. Ugh. It'll give me more energy but I hate the side effects.

I really hate this disease and what it's done to my life since being diagnosed. I'm having a really hard time accepting it and I'm so afraid that feeling like this is going to be the new "normal" me.

 

[bwightman]

Pen, thank you so much for your support and kind words. I'm doing my best to try and stay positive and I know it hasn't been that long since my diagnosis so they're still working on trying to find the best meds for me. It's just so frustrating. I used to have so much energy and now it seems like it takes all my effort to drag myself out of bed in the morning to go to work. When I get home I just collapse...only to start over again the next morning.

I feel like I've become a terrible burden on my husband and my parents...it's just awful but I feel like I don't have the energy to do anything.

 

[Creepy Lurker]

Well, I just got back from an appointment with my GP (one that has been scheduled for a few months). I described to her all of my symptoms and she and my GI put their heads together and decided to do a bunch of bloodwork, a possible CT scan, and put me back on Prednisone 60mg. Ugh. It'll give me more energy but I hate the side effects.

I really hate this disease and what it's done to my life since being diagnosed. I'm having a really hard time accepting it and I'm so afraid that feeling like this is going to be the new "normal" me.

Cheer up

When you're in remission, life is great.

 

[Babe123]

Well, I just got back from an appointment with my GP (one that has been scheduled for a few months). I described to her all of my symptoms and she and my GI put their heads together and decided to do a bunch of bloodwork, a possible CT scan, and put me back on Prednisone 60mg. Ugh. It'll give me more energy but I hate the side effects.

I really hate this disease and what it's done to my life since being diagnosed. I'm having a really hard time accepting it and I'm so afraid that feeling like this is going to be the new "normal" me.

dont let it get you down. you cant let it take over your life. for the past 3 or so months ive been ill and have let it really get me down. its only in the past 2 weeks that ive decided that im not going to let being ill take over my life. im going to be a normal teenager who goes out with my friends and doesnt hide in my room because i dont want to risk being ill outside of my comfort zone. you have to take each day as it comes. one day im fine and feeling great..the next day im ill. you not a burden at all. you wont have the energy to do much.. but once your meds are sorted and you go into remission you'll feel great

its a hard thing to accept but talk to everyone on here. i have had so much suport and help since being on here..ive had mre support than any medical team could ever give me
xx

 

[bwightman]

dont let it get you down. you cant let it take over your life. for the past 3 or so months ive been ill and have let it really get me down. its only in the past 2 weeks that ive decided that im not going to let being ill take over my life. im going to be a normal teenager who goes out with my friends and doesnt hide in my room because i dont want to risk being ill outside of my comfort zone. you have to take each day as it comes. one day im fine and feeling great..the next day im ill. you not a burden at all. you wont have the energy to do much.. but once your meds are sorted and you go into remission you'll feel great

its a hard thing to accept but talk to everyone on here. i have had so much suport and help since being on here..ive had mre support than any medical team could ever give me
xx

I know, I feel so lucky that I found this site. It's only been a few days, but I'm really grateful for all the support I've gotten from everyone here. It's so reassuring to know that people here actually understand and have experienced what I'm going through right now...it makes such a difference.

I started Pred and Flagyl today...two of my least favorite drugs. I have an appointment next week with a C/R surgeon to determine if I have a fistula or a pilonidal cyst (the jury is still out on that one, although I've already had three unsuccessful surgeries for the pilonidal over the course of the last 11 years). At that point, I guess my GI will decide if I'm a good candidate for one of the biologics. Fun stuff.

Thank you, everyone, for all your kind words and support. It means so much!

 

[bwightman]

wow, you really need big hugs! I hope that Remicade will help you, it is the best one of all the biologics, you have to fight, dont give up. We all need to fight this stupid disease, it is hard, but I have been in the self pity thing, and hard to get out of it. I have a wonderful husband who is supportive. I hate Flagyl too, makes my mouth go fuzzy and tasting yucky. I havent taken the proper dose of 3 a day, I go every other with Flaygl and cipro. Good luck!

Flagyl is the worst....I hate that gross metallic taste you get in your mouth. And it gives me diarrhea, which of course is not a good thing, but unfortunately there's not much I can do about it at this point.

It seems like the Pred is definitely working...I feel much better today, but I'm also really jittery and having trouble sitting still and concentrating for any amount of time. I don't really remember that happening the last time I was on Pred, but I think I was just so happy to be feeling better and out of the hospital that I was just happy all the time. Now it seems I'm more anxious...maybe because I know what the Pred and Flagyl are going to be doing to me this time around. I'm supposed to follow up with the GI on Friday so I think I'm going to really push her to start tapering me. I'd much rather be off the Pred and onto something like Remicade or Humira, and I think she feels the same.

What's most unfortunate is that I haven't had a good night's sleep in at least a week, and the Pred definitely won't be helping with that!

 

[theability]

bwightman...

I just finished the "prednisone" tapper and my big side effect it, inability to sleep-whatso-ever during my course of steroids, it sucks!!!

I feel completely manic and have surges in energy levels, its really crazy, then it takes days for me to normalize.!!!

I hope that things calm down for you and you recieve the relief you so much deserve.

Hang in there!!!

 

[Isla]

When everyone talks about the steroids it makes me really feel bad for my sister who has to be on steroids for the rest of her life due to her brain tumor removal. She has to take even larger doses when she gets sick. That stuff just sucks.

 

[Ghostwind]

Hang in there.

Flares can come and go so there will be good days and bad days. Hopefully you can find a treatment that helps minimize symptoms or completely puts you into remission.

I'm still searching for the magic formula myself and have been really dealing with the fatigue factor the last couple of months.