Flareups

[num1habsfan]

Question for you guys...I'm in the middle of having another flareup (believe me, the symptoms are all coming!), started yesterday...

Just how do you guys deal with them, especially for those of you in university??

~ Lisa ~

 

[amor151]

well im at school and to be honest ive found that a couple of days of just relaxing and watching what i eat can really help. if i feel flare up coming i try and chill out abit, put my feet up and try to do nothing at all. unfortunately ive got ALOT of important tests coming up so all i can really do is go to school, suffer through the day and collapse when i get home!

my disease has never really got any better yet and im always in some sort of pain so ive just learnt to go to school as much as i can but if i know im not up to it to stay home, do nothing and just chill.

not much advice to go on there but thats just what i do. hope the flare up flares back down quickly! best of luck

 

[num1habsfan]

I wish i could take a couple days off, but the semester is just getting started!! And I don't have my letters yet from the disability office for my instructors so I can't even prove that i'm not feeling good. This morning I just about didn't make it to the washroom, I'm sooo lucky that it caught me right as class ended and not before. I would have had to drop everything and run.
I think that's what i hate the most about the flareups, besides the obviously "on fire" feeling--that EXTREME urgency!

~ Lisa ~

 

[amor151]

yeah being in education with crohns is definately tough. i dont think i would even show up at school if it werent for my medical pass. (a small card that allows me to leave a lesson whenever i feel the need to) There have been MANY close shaves and ive even snuck into the staff toilets on the odd occasion because our school toilets are so poor theres only one cubicle with a door that locks for over 600 boys!

yeah that extreme urgency you talk about has gotta be the worst bit. once you feel like you need the toilet youve got about 2 minutes before hell breaks loose which is never an easy situation to be in!

hope you get your disability letters ASAP and wish you all the best becuase were in the same boat here and it aint a nice place to be! good luck

Henry

 

[Kev]

num1habsfan... just a thought. contact instructors, advise them of your situation, tell them the letters are in the works. I taught at various college campuses (sp) years ago. most of my peers were not 'naturally' un-sympathetic.. Just some had become a little jaded by some students who tried 'anything' to get a 'free ride'. It is a totally different story if we see (saw) someone who desparately wanted to get their education; but had real issues or hurdles to overcome. If your desire to get your education is genuine, and your instructors know this from your discussions with them, I'd be surprised if they were anything less than extremely accomodating. That's the way it used to be... Just be sure to always avoid the temptation to play on your illness, OK

 

[num1habsfan]

num1habsfan... just a thought. contact instructors, advise them of your situation, tell them the letters are in the works. I taught at various college campuses (sp) years ago. most of my peers were not 'naturally' un-sympathetic.. Just some had become a little jaded by some students who tried 'anything' to get a 'free ride'. It is a totally different story if we see (saw) someone who desparately wanted to get their education; but had real issues or hurdles to overcome. If your desire to get your education is genuine, and your instructors know this from your discussions with them, I'd be surprised if they were anything less than extremely accomodating. That's the way it used to be... Just be sure to always avoid the temptation to play on your illness, OK

Trust me, I don't try to get everyone to support/help me unless I really need it. On Celiac's forum I think I've heard from everyone who follows my posts that the world needs more people like me because of my strength. My friends have said it too. So unless i'm in some MAJOR distress, i deal. I feel like staying in the bed or living in the bathroom when I get these pains, sometimes just in the fear of throwing up (my nausea is BEYOND BELIEF!) but I dont--I drag my ass out and still make an appearance.
Though being strong is a disadvantage too because then it's harder for someone to actually SEE that i'm not feeling good at all!

~ Lisa ~

 

[num1habsfan]

yeah being in education with crohns is definately tough. i dont think i would even show up at school if it werent for my medical pass. (a small card that allows me to leave a lesson whenever i feel the need to) There have been MANY close shaves and ive even snuck into the staff toilets on the odd occasion because our school toilets are so poor theres only one cubicle with a door that locks for over 600 boys!

yeah that extreme urgency you talk about has gotta be the worst bit. once you feel like you need the toilet youve got about 2 minutes before hell breaks loose which is never an easy situation to be in!

hope you get your disability letters ASAP and wish you all the best becuase were in the same boat here and it aint a nice place to be! good luck

Henry

Sometimes I dont even have 2 minutes.....theres been quite a few occassions where I was only about 10/15 feet away from the bathroom and I went for it as soon as I felt the urge and nearly didn't make it. So yeah..sometimes I have well under a minute, or it would be too late. I talked to 2 of my instructors though and for now one said no problem to going bathroom, and the other said i can probably get extra time on exams. But we'll see yet. Hopefully they dont take too long with the letters.

~ Lisa ~

 

[num1habsfan]

Ahhh this is driving me mental....today my side is seriously feeling ON FIRE. I even have to sit in a certain way. i would go to a doctor but my usual ride isnt around and i don't have enough cash for a taxi....

~ Lisa ~

 

[Sojourn]

Are you at the university now? If I needed to I would tell another student I was having a medical problem and needed a ride to the doctor or hospital. If it costs as much as here in the U.S. I can understand not wanting to take an ambulance.

 

[num1habsfan]

Are you at the university now? If I needed to I would tell another student I was having a medical problem and needed a ride to the doctor or hospital. If it costs as much as here in the U.S. I can understand not wanting to take an ambulance.

If I didnt have my 1st class of one class tonight, I would be going...the ERs here SUCK, honestly. That last time I went in there as an emergancy by referral from a doctor at a walk-in clinic and was supposed to be seen immediately. I got there 5 pm, didnt get out til 3:30 AM. Always spend at LEAST 10 hours in there. and I dont think I could handle that right now.

~ Lisa ~

 

[Babe123]

is crohns a disability?

becuse i havnt had itlong im not sure if i have had a flare up although the past few days ive felt so ill beyond beleif. ive missed college because of it. its a painbecause the toilets are no where near my classrooms so i would be in trouble if i ever needed them.

x

 

[Kev]

I was on short term disability due to my health. After my 1st op, I came within 1 week of qualifying for long term disability... If only the symptoms had returned one week sooner... Or, if the minute they did show up, i'd headed straight to the ER. Que sera, sera. Would have solved my money troubles and paid for my meds too. If your symptomology warrants, and your doctor agrees, then I've heard of others on here who applied for disability in one form/other.
I could apply for it now, but it would be public disability, no medical coverage, very little income. My stubborness makes me work as much as I can, whenever I can... even when that struggle is extremely difficult, embarrassing even. But that's just me. I'm old, on my own, and I don't have children/responsibilities.

 

[Shane]

In the UK, if you have Crohn's, you are possibly (depending on severity of symptoms) entitled to Disability Living Allowance. It doesn't take income into account either, just how the disease affects your day to day living. I was awarded it (after medical examination by their Doc) and it has really helped me out.

Shane

 

[Guest]

i've just applied for incapacity benefit, dont know if i will get awarded it yet. i've got a sick note from the gp, and my hospital doctor is writing an explanatory letter to give to the benefits agency too. i hope it goes through ok as i cant work at the moment.

 

[Shane]

I haven't been able to work either. I applied for IB after SSP ended from my employer, had to fill in a personal capability assesment, then (once again) I had to undergo examination by one of their doctors. I have been awarded the benefit and am just waiting for them to get their arses into gear over the doc's report so I don't have to keep getting a new doctors note from my gp every month.

I miss my job, driving me mad not being able to work. Even when I'm upto working again I doubt I'll be able to go back to same job anyway.

I'm sure, with the doc's letter, you'll have no real probs with it.

Shane

 

[Jeff D.]

Maybe if you are having problems then you should just take the semester off to get better. I'm doing that right now but I'm taking Remicade as well right now so I have a lot to do right now. Best of luck, I'll be praying for you

 

[Guest]

hi shane - thanks, thats quite reassuring to read that you were awarded the incapacity benefit - i'm really pleased they allowed it for you. i actually walked out of my job due to an issue relating to my ill health, even though i'd dragged myself into work nearly every day near the end.. however, i dont miss it at the moment. it was getting harder and harder to face each day, and i dont feel any better now than i did then. i'm sure, once i start to pick up, i will be itching to get back to some work or other, but to be honest its a relief to not have to go, just now.

num1habsfan - hiya. i cant imagine how hard it must be for you all in canada & the states to have to pay for everything medical, including ambulances! i know we moan about the national health service here in the uk sometimes, but really we are lucky. we also have the incredibly long waits in a&e, and overcrowding - many times i've been lying on a trolley in a corridor for hours on end, surrounded by drunks, druggies, and hardly any staff without shouting distance. but at the end of the day, the hospital does give good treatment usually, and we dont have to pay. (well, we do in our taxes, but not directly).

how are you now? - better, i hope.

dingbat.

 

[Kev]

Well, we don't pay for everything.. but the distinctions are pretty blurry & bizarre. I ended up in ER (12 hr wait - no fun) That hospital decided I needed admission on the spot, problem was they didn't/don't have a GI ward/dept (it's in another hosp) but I needed fluids, iv, pain meds... so the popped me in a room, hooked me up, & observed me overnite. Next day they transferred me by ambulance to the other hospital - where they teach GI, and have full departments and a GI ward. (why that hosp doesn't have an ER, won't admit patients directly, I dunno). To make long story short, I wasn't charged/didn't pay for the ambulance transfer. Years before, as my dad lay dying in hospital, he needed to be sent to another hospital for diagnostic imaging that they did not have in that hospital. Another nearby hospital did have the equipment, but they didn't have the staff to run it (true story, really embarrassing faux pas on the part of those running these hospitals). Anyway, they shipped poor old dad 1000 k round trip to a hospital with equipment/staff to have the diagnostic. He was at death's door (literally), my baby sister made the trip with him, she was young AND fit. In total, they spent approx 14 hours in the back of ambulance (less than 45 minutes away from hospital they were forced to wait 2 hrs for a 2nd set of drivers - drivers were forbidden to work more than 12 hour shifts... tho only 45 minutes from their destination).. 2 hours in cold ambulance sitting waiting for relief drivers in the midst of one of our Canadian winters, no less. My sister was totally exhausted by the ordeal. We were amazed dad survived. The result? The imaging revealed/confirmed inoperable pancreatic cancer. Dad passed away later that year... After he passed, my mother received a bill for this ambulance trip.. tho it was hospital to hospital, and he had no insurance, etc., etc.. Yeah, our government agency who runs the hospitals here sent mom a bill for $1500 Talk about adding insult to injury. OK, that's enough of my rant

 

[num1habsfan]

Yeah i'm better now at least, for the moment anyways. It sucks when I do get these flareups/the bleeding by the time I can get in to see a doctor it's already passed so I no longer have proof of it happening.
I STILL am waiting for the letters from the disability office and it sucks. My teachers are getting anxious and without those letters I feel weird leaving the bathroom for 10 minutes at a time!
My crohn's pains are slightly less (because i havent eaten meat, or much of anything at all!) but my gallbladder attacks are happening more often and I just found out my asthma is VERY worsened (my breathing apparently dropped by almost half!!). I can tell you when its -40 C outside (NO JOKE!!) thats REALLY hard on my lungs!!

Curious question, since I'm not sure if I got glutened (though I think I did), do you guys with Crohns ever get horrific/"real" nightmares if it is acting up?? Or can I blame that on only the Celiac?

~ Lisa ~

 

[Guest]

Yeah i'm better now at least, for the moment anyways. It sucks when I do get these flareups/the bleeding by the time I can get in to see a doctor it's already passed so I no longer have proof of it happening.
I STILL am waiting for the letters from the disability office and it sucks. My teachers are getting anxious and without those letters I feel weird leaving the bathroom for 10 minutes at a time!
My crohn's pains are slightly less (because i havent eaten meat, or much of anything at all!) but my gallbladder attacks are happening more often and I just found out my asthma is VERY worsened (my breathing apparently dropped by almost half!!). I can tell you when its -40 C outside (NO JOKE!!) thats REALLY hard on my lungs!!

Curious question, since I'm not sure if I got glutened (though I think I did), do you guys with Crohns ever get horrific/"real" nightmares if it is acting up?? Or can I blame that on only the Celiac?

~ Lisa ~

i'm glad to read you're feeling a bit better now lisa. i've studied dreams a bit, and this coupled with my own experience would probably lead me to assuming it may not be the actually condition that alters our dreams to nightmares, but the fact that we are not well in general. its a known fact that when we're coming down with, say, a virus, we can have bad dreams which is usually associated with a high temperature. crohns can cause night sweats, plus the underlying worry we have about ourselves when we're ill - its no wonder our sleep isnt always the calm and gentle thing it should be.

if the nightmares are recurring ones, there are things you can do to try and stop them happening. if you want any advice, let me know

 

[num1habsfan]

i'm glad to read you're feeling a bit better now lisa. i've studied dreams a bit, and this coupled with my own experience would probably lead me to assuming it may not be the actually condition that alters our dreams to nightmares, but the fact that we are not well in general. its a known fact that when we're coming down with, say, a virus, we can have bad dreams which is usually associated with a high temperature. crohns can cause night sweats, plus the underlying worry we have about ourselves when we're ill - its no wonder our sleep isnt always the calm and gentle thing it should be.

if the nightmares are recurring ones, there are things you can do to try and stop them happening. if you want any advice, let me know

Yes, actually that would be nice to know how to help them!. There are some that I've seen/had 3 or 4 times identically. Then its clearly they must be caused by being glutened and only that. *hates Celiac for nightmares*.

~ Lisa ~

 

[Guest]

Yes, actually that would be nice to know how to help them!. There are some that I've seen/had 3 or 4 times identically. Then its clearly they must be caused by being glutened and only that. *hates Celiac for nightmares*.

~ Lisa ~

i didnt know about the 'glutened' effect, and that celiac can cause bad dreams

but on the recurring nightmares.. this is one thing that often helps people, but it can only work if you actually remember the nightmare...

write it down, every last detail you can remember, and draw pictures of scenes from it. also write down bullet points about how certain parts of the nightmare made you feel, what they made you think. try & do it over a full day, so you can keep adding to it as you remember things. then read it through a few times.

then, before you go to sleep, get yourself really relaxed (you can add things here like lavendar oil near your pillow etc) and have a good long think about the nightmare itself, about the things you've written and drawn, and try and picture it as a film you've seen - get into it.. and then change the ending in your mind. make the nightmare flow into a positive ending where you are in control and everything is ok. if you're not too tired, sit up, and write the ending after your description of the nightmare.

i suppose its kinda like aversion therapy, facing it head on in your waking hours, but we do have the ability to control dreams to a certain extent, by what we do with those images and thoughts when we're awake. there is a thought that recurring nightmares reflect a particular worry of ours, which we dont address, dont allow ourselves to really look at and think about, so the symptom (the nightmare) keeps coming back. if we face the symptom, and take away its control, it often stops the repetition.

if you try it, let me know how you get on.

 

[num1habsfan]

i didnt know about the 'glutened' effect, and that celiac can cause bad dreams

but on the recurring nightmares.. this is one thing that often helps people, but it can only work if you actually remember the nightmare...

write it down, every last detail you can remember, and draw pictures of scenes from it. also write down bullet points about how certain parts of the nightmare made you feel, what they made you think. try & do it over a full day, so you can keep adding to it as you remember things. then read it through a few times.

That would be easy to do but take forever, writing it all down. 99% of my dreams are VERY clear. If I ever have the same one again that I have before I'll try it.

And yes, gluten sure does have a lot of effects on a person . I was at a concert on Sat. night and I actually got glutened from the gyproc covering the floors!! (gyproc is often made with wheat). I wish it went as far as stomach pains. These are one of the cases where its so minimal amount that i get everything else BUT the stomach pains -- brainfog, and last night was insomnia (only slept 2 hours total, didnt fall asleep til 7am!)

Know a relief for insomnia besides coffee? :tongue:
~ Lisa ~

 

[Guest]

That would be easy to do but take forever, writing it all down. 99% of my dreams are VERY clear. If I ever have the same one again that I have before I'll try it.

And yes, gluten sure does have a lot of effects on a person . I was at a concert on Sat. night and I actually got glutened from the gyproc covering the floors!! (gyproc is often made with wheat). I wish it went as far as stomach pains. These are one of the cases where its so minimal amount that i get everything else BUT the stomach pains -- brainfog, and last night was insomnia (only slept 2 hours total, didnt fall asleep til 7am!)

Know a relief for insomnia besides coffee? :tongue:
~ Lisa ~

jack daniels?

being hit over the head with a large frying pan?

umm other than that, no

 

[num1habsfan]

jack daniels?

being hit over the head with a large frying pan?

umm other than that, no

Haha what nice suggestions you have!! May just have to dig into the vodka tonight to put me to sleep, or a couple gluten-free beer, or both? :ycool:

~ Lisa ~