How do you know if you're flaring?

[bushydougie]

As many of you know I am still undiagnosed but my GI believes I have CD only they haven't found it yet.
I have recently started back at work after 8 months off and I have just come off pred 12 days ago.
I have been getting a variety of symptoms since my last week on pred but am unsure what they mean. Could it be that I am back at work which is making me extremly tired? or could it be the effects of coming off pred? or could it be my suspected CD coming back? How do you know or is there no real answer to this??
I am finding it really confusing and am getting a bit paranoid about each twinge that I get.
How long after coming off pred should the inflammation stay away?

So many questions for you all

I hope some of you can help alleviate some of my concerns

Thanks
Sam

 

[Cat-a-Tonic]

Hi Sam,

As you know, I'm also undiagnosed, so there's a fair amount of guesswork for me too when I'm in a flare. But I know for sure I'm flaring when I experience anything like chills, fever, night sweats (hot or cold sweats), joint pain or a lot of lower back pain. And of course my other symptoms like d, nausea, fatigue, pain are all much worse than usual.

What symptoms are you experiencing? I wasn't on pred long so I don't know the symptoms of pred withdrawal, but it could be that too.

 

[Tinkerbell]

Hi Sam,

I have the same problems. How do you know if you are feeling very run down due to the disese or is it me just being soft and everyone feels run down after a full day at work??!!?

I have had crohn's for 7 years and still get confused with the symptoms and feel I am being paranoid at times....wondering if you need to call the hospital or wait a few days...

I am not sure what the answer is. It must be very tough for you not being diagnosed. I am sure people here can offer you support and answers, for me it is nice to know that people think the same as me!

Thanks

 

[bushydougie]

it's basically most of the symptoms that I had before the pred though my bms are not too bad. My back ache has got worse at the base of my spine since my last week of pred and yesterday I started to get pains in my knee which I've never had before. My night sweats have returned but not as bad as before. My fatigue is getting worse and I am getting worried about work as I literally cannot manage to do anything in the evenings or at the weekend or my day off. The pain is not as bad as before the pred but it seems to be coming back too. Argh!!!
At least I'm seeing my GI next week and can talk to him...

 

[Rossy]

Had to think about this as its really not easy to answer.

I think I know what the "normal me" is and if things start to get much worse for a range of issues then thats me flaring however i don't feel i'm ever without something going on.

Normal for me would be 4-6 bms a day, some discomfort, mild pain, tired, foggy head, some joint issue and thankful thats all.

Flare would be an exageration of the above ie 10+ bms a day with blood, sometimes explosive (looks like someones been murdered), little control, pain, stomach feels very heavy, exhausted, joint pain and really irritable and pretty pissed off

 

[2thFairy]

I have UC. Before all of the really bad stuff runs wild, I have a twinging thing in my gut and get gassy, and all food tastes weird. Then pain, chills, sweats, mucus, diarrhea, nausea, blood, and fatigue. When this lastest flare started, I was so incredibly moody that I knew I needed to call the doctor.

 

[Cat-a-Tonic]

Hi Sam, just checking on you to see how you're doing. And to add that you may want to write down everything, so that you can show your GI when you see him next week. Write down every symptom, every question, what you eat and how often you go to the bathroom, etc. And if you feel the symptoms are getting worse, don't wait to see your GI next week - call his office and ask to speak with either him or his nurse, and let them know what's going on. They may be able to prescribe another short round of pred over the phone so that you could get some immediate relief. Good luck, please let us know how it goes.

 

[bushydougie]

Thanks for all your replies!
I guess it's hard to know what's normal or not for me at the moment. I only got sick in january and was ill until taking pred in July. Having started back at work and then finishing pred within a short time I am struggling to know the causes of feeling rubbish!! I do however know that I am not feeling right.
Cat - I shall indeed right everything down and go through it all with my GI next Wednesday. I'll see how I go over the next week. I am not anywhere near as bad as I was before pred but I just don't want to go back to that at all!! How are you feeling now?

Thanks again everyone. It helps to know how others are doing

Sam

 

[Cat-a-Tonic]

I'm actually feeling wonderful - the Entocort seems to really be kicking in - I had heard it takes a couple of weeks to kick in, and I'm on day 9, and feeling really good today for the first time in a long time. Appetite's up, energy's up (but not to the levels it was up when I was on pred!), and the pain/d/nausea/fatigue have decreased a lot. It's been a long time since I've felt human - I think the last time was when I was on pred!

Sorry to hear you are still not feeling right. It certainly sounds to me like a flare - just before my most recent flare, I had a feeling all day of "something is off". So if you aren't feeling right, I hate to say it, but it sure sounds like a flare to me. Take it easy as much as you are able to and try to stick to low residue foods and get plenty of rest - I know, easier said than done when you have to work. I hope the week flies by for you and you get some answers and relief from your GI! I'll be thinking of you and hoping you are able to get some relief.

 

[bushydougie]

Thanks Cat. I am so pleased to hear that you are doing so well. That has made me feel really happy
Today is my day off and I have taken it really easy though I'm still tired now. I try to be really carefully with my food anyway as don't want to make anything worse I'll see how I go and get in touch with my GI if I get any worse. Was hoping the pred would put me into remission for a while longer than this...

 

[Tinkerbell]

Hi Sam, How are you feeling today? hope things are a little better. Hope you are still resting....

 

[Cat-a-Tonic]

Yeah, let us know how you are doing today, Sam. If you went to work, I hope you are able to take it somewhat easy and take lots of breaks. Thinking of you!

 

[bushydougie]

Thank you for your kind words and thoughts Tinkerbell and Cat. I've been to work today and coped ok. I don't feel as bad as I have done but I find that this happens from one day to the next. I've now got back from work and had a lie down and am now on the sofa under my duvet!!
Let's hope tomorrow brings a similar day

 

[Cat-a-Tonic]

Glad to hear you had an okay day today - I hope tomorrow is just as good or better! Just remember, tomorrow's Friday, so you just have to make it through that one day and then you get 2 lovely days of rest. That's what I always tell myself to get through a Friday after a long work week! Just one day, that's all you have to worry about.

 

[Cat-a-Tonic]

How are you doing today, Sam? I hope all is well.

 

[bushydougie]

Thanks for your concern Cat. I had a temperature during the night and obviously didn't sleep well so haven't felt great today. But I have managed to get through a day at work. Am now in my pjs under the duvet watching tv
Hope you're still doing well?

 

[Cat-a-Tonic]

I'm not so well today - you already saw & posted in my other thread. Maybe it's just a Monday thing, ha ha. I felt fine over the weekend - got a bit dehydrated at one point which made my headache worse, but other than that, I felt great. Wish I could say the same about today, but I'm having some pain and my appetite is low, and had blood on the TP this morning. A bit scary, I'm hoping it's just a weird fluke.

Sorry to hear you're not doing so well either. Glad to hear you're resting, and I believe you get to see your GI again in a day or two? Hopefully he is able to either put you back on pred or give you something else to get you feeling some relief again. Let me know how it goes with your GI - I'll be thinking of you!

 

[DustyKat]

Awwww, I really feel for you two! I know I can't do anything for you or offer any advice but I am thinking about you both and sending mega loads of squishy hugs your way...................................

:hug::hug::hug::hug::hug::hug::hug::hug:

Lots of love, :kiss:
Dusty

 

[Amc2861]

Hope you feel better soon.

 

[bushydougie]

Thank you Dusty and Amc. I'm off to see my GI tomorrow so will be able to ask him all the long list of questions I've written down

 

[Cat-a-Tonic]

Good luck with your GI appointment tomorrow! Let us know how it goes, if he decides to do more tests or put you on meds or what. And if he decides to do more tests, I hope the prep is easy this time around.

 

[ThatBeerGuy]

The pains could be from coming of pred. I havent been on it but it is a cortasteroid and could have helped injurys that were before you started the dose. Now that your off it make them flare up.

 

[bushydougie]

Thanks Thatbeerguy. I've been of the pred for almost 3 weeks now. Not sure how it works but could it still be causing my aches and pains? Will certainly be checking with my GI!!

 

[ThatBeerGuy]

It could, CortiSteroids are used also in some sugery recovery instead of cotozone injections to tighten the muscles back up around the wound. As the muscles go back to their normal state it could cause pain.