Knowing the difference between a few bad days and the start of a flare

Congrats on a full year of school and managing crohns! I hope you can keep that going a long time.

Anxiety over an unpredictable illness can take a lot out of you. It totally takes over my life sometimes and even when my husband is fine, and only has minor issues, I am overwhelmed with anxiety. Basically I'm waiting for the other shoe to drop because I know how bad crohns can be.

I think that's where you are as well. You have been put through the wringer with crohns, and you know how bad it can get. So, when you experience a few off color moments, your mind immediately wonders if crohns is rearing its ugly head again, if things are going to get really bad again. It is almost like PTSD. You remember the trauma of being really sick, and what other people can shrug off as indigestion sets off an anxiety response in you.

This daily anxiety can suck all the energy out of you. I am perfectly healthy, and the anxiety makes me exhausted. I function enough to get things done, but I have to drag myself through it through sheer will. I am currently seeing a psychologist who would like me to start on an anti depressant because he says that prolonged stress and anxiety can change brain chemistry to where you are depressed.

This isn't to say that this is what is causing your exhaustion. I just want you to also consider how much your anxiety and stress contribute to the tiredness.

When you see the doc next, maybe you can get some blood testing done - check your vitamin D, vitamin B, iron, etc. a friend of mine who complained of being tired a lot improved after taking some high potency vitamin D (she was low in vitD). Also, check your esr and crp levels to see if you have any low grade inflammation going on. Inflammation can cause fatigue as well.

Also, are you sleeping enough? Lack of regular sleep can cause a lot of fatigue especially combined with illness and medication related fatigue as well. I was the type of person to whom a routine was anathema, but since my husband got sick with crohns, we try to keep a regular sleep schedule, so he can get plenty of shut eye. It really does seem to help.

I don't know what meds you are on now,but if you think crohns is still simmering away in the background, you should definitely seek more investigation. Start with blood tests and then move on to colonoscopy or MRE etc.

To answer your other question about whether you know it's a flare up or not, you are not alone I that. Every time my husband gets sick, he isn't sure if it is crohns or something else. We've used a 3 day rule - feel off for more than 3 days on a very strict diet, and it is time for a GI visit. Or if he goes downhill fast. My husband hasn't been able to tell what's just a blip and what is crohns.

When your friends and family forget about crohns, remind them. Perhaps being open about how you feel and the worries in your head will let them get a glimpse into your world. My husband gets asked if he's all better now - since he now looks fine. He does try to explain that it is something he has to live with everyday, but honestly only a few people take the time and effort to think about it and understand. Being that you are in college, I suspect that your friends just don't understand . . . yet. But with time and openness, I think you can slowly expect a few to empathize.

((Hugs)). I hope you find and treat the cause of the fatigue.

PV

Thank you both really needed to hear those encouraging words.

You're probably right about the anxiety, it's stupid because some of the scarier symptoms like pain and blood don't phase me but silly things like aches and pains tiredness scares the crap out of me lol

I am def getting bloods done before I go for the bog standard stuff and see if my doctor feels the need to get my vitamins tested I already take a whole bunch of supplements lol.

Ncot you're right my flares usually appeared out of no where but I sometimes wonder if I ignored warnings signs wanting to pretend I'm invincible lol but I also don't suffer with the dreaded D all that often more often than not I get constipation instead which doesn't help with the pain either...

My mums not a problem in appointments she usually remembers more about what the dr needs to hear than I do, but she's also the first to dismiss "silly" symptoms which to me aren't silly because I lie with them... If you know what I mean
As for my friends I guess they've never seen me sick so how could they understand let alone remember

I am really grateful for the health I do currently have, and I'm even more grateful for both your responses. It feels so much better knowing you're not alone, without wishing this disease on anyone else I dunno how I'd cope sometimes without someone who's been through it in their life either giving me kind words of reassurance that I am normal lol or telling me to sort myself out haha

Thank you both again. Just a shame were all going to be worrying what's round the corner.

I was angry for a while that I couldn't keep up with everyone else at uni partying and managing my studies, but now I see it more as a survival tool. I need to complete college to eat a job that will include good insurance lol so the fun side has to take a back seat but I know now that it will be worth it, because hopefully it will ensure some independence somewhere down the line. Even I. I do wana give up every time I face an exam lol.

I sometimes wonder if I have IBS too, because I get a lot of the bloating and constipation and I have muscle spasms all the time.
It's so hard when you know you're bodies telling you sometime but you don't have the power to do something about it. My doctor is good, but we haven't pushed because of the cost of changing meds and he's just been respecting that, I guess at te time id started feeling better and felt I could live like this until something else went wrong lol.
But last year I was hospitalized from the pain, basically was doped up with pain killers n told when the meds kick in the pain will stop. Well I'm still popping pain killers more than I'd like.

It's hard to be sick and ask for help when you're so trained to not complain lol it's only recently my neighbor and my doctor have said, how are you? I'm okay thanks and then they're Kirk, ok no you're not... Lol
First two people to tell me it's okay to be honest and I guess that's a huge problem with the world we live in too, so trained to expose as little as possible.

Argh lol I'm so appreciative of you guys an I guess we can only keep hoping things will start changing soon!

Oh Jennifer that's horrible, I hate having that "wake up call" feeling when things aren't as good as you thought! I hope you and your doctor come up with a plan of action soon! What meds are you currently on? If you're not treating it sufficiently its more likely to get worse than just subside I learnt that the hard way.

I have had the diff flares too... I once was admitted because my eyes looked like they were bleeding and because of arthritis in my foot had no bowel probs then I was admitted once or twice because of bad D and the rest that follows I've been hospitalized for constipation too lol
It's crazy. They should invent some kind of home test that we can do to either test our own blood or poop at home to reassure ourselves lol!!

I have my appt at the end of the month but I may ask to get my bloods done in the next week or so for my peace of mind that if something is abnormal I haven't left it too long! And if everything's fine I can ask for further tests into my vitamins n maybe look at my thyroid, I hate pushing for more tests, really hate it. But I guess it's time to man up and just do it!

It's very easy to go into denial, I spend most of the time telling myself I have to know my limits and what I can and can't do and then as soon as I get sick I wonder why.... Of course it has nothing to do with not being strict on my own rules lol.

It's a pain, I hope your insurance gets into gear ASAP. And I hope humira works for you because asacol really isn't a great help, my dr took me off and said chances are it isn't doing anything at all, and I feel no different to when I was on it a year ago.

Well if I go by everyone's advice if waiting approx 3 days then I need to make some call, but of course it's Friday and I will tough out the weekend first unless something drastic happens.
I was freaked out last night I was just falling to sleep n I woke up feeling like I'd been punched in the stomach it was the strangest feeling in the world lol.

Anyway I'm exhausted only been up an hour so I'm gunna try having another shower, cold this time lol.