How long is this going to go on for?

[freespirit]

I know its different for everyone but is there anyway of knowing how long a flare up is going to last? I am currently starting week 4 of steroids and it just doesnt seem to be easing despite being on over 25mg still of pred, i am not putting on weight (which i am fine about)but in fact last week i lost 3 pounds.

I'm going to the toilet like at least 5-8 times throughout the night for a tiny bit of diarrhea and then total constipation again. When the time comes that i eventualy pass more than a small amount of fluid, the pain is horrible and i find that i have to lie down on my bed afterwards to "recover" my heart and lower back pounding and usually end up sleeping for a small period of time.

I'm so bored and really disheartened at the lack of improvement. This is my first flare up since diagnosis, hence me not really knowing what to expect

Thanks

 

[Ian]

Hi,

Really sorry to hear you're suffering I remember my first flares when it was all new, it's not a good time but you will get through it in the end

What dose of Pred did you start at? I always start at 40mg, any lower and it doesn't seem to work. My first go on Pred I started at 30mg and it did nothing. 40 was the magic number. If you started lower than that, you may need to go up to really stamp the symptoms down before tapering?

Seriously, don't suffer in silence. Contact your GI asap and make a new plan

 

[freespirit]

hiya
i started on 8 steroids a day, so thats 40mg right? Ive only been in contact with my doctor who wrote to my GI and they said they cant see my until May? :-(

I have been diagnosed a couple of years so feel like i should know what i am doing, but i really dont lol!!

Aside from being on steroids i only take asacol.

Seems to be going on forever! Hope you are well?? I have read a few of your posts!!

 

[Ian]

Yeah assuming you're on the standard 5mg tablets 8 a day is 40mg.

How long were you on 40mg for before you started tapering? Did that dose help with the symptoms and things have worsened since you reduced, or have you not had any relief at all?

I don't think you should've started tapering unless the symptoms had receded. I'm normally told to take 40mg for 2 weeks and then bring it down 5mg per week, but I've had to be on 40mg for longer than that in the past - you have to play it by ear based on how you're responding. You may just need longer at the higher dose.

You should try and contact your GI somehow; you don't need a routine appointment, you need an emergnecy one if you're having problems. I see my GI once a year routinely if I'm having no trouble, but if something bad happens I just email the GI nurse and she squeezes me into the next available clinic. And this is the NHS, not private health care! They should be able to do better than that. You might not even need to go in; he/she could probably advise you over the phone in a few minutes.

I'm okay thanks, waiting to see if I improve over the next 2 weeks with ALL the stuff I'm on (which includes 40mg of Pred - week 3, btw!). I feel alright but my insides say otherwise - I'm VERY inflamed so if it doesn't calm down I may be having my first surgery In terms of symptoms though, it sounds like you're suffering way more than me! Weird how this disease can operate isn't it!

Hope you get some releif soon - especially as you're a fellow Midlander

 

[freespirit]

Yeah i just do not understand it at all!! I dont know if my symptoms are bad or not that bad ? I know its different for everyone but just dont really have a clue.

Maybe i will up my dose of steroids tomorrow for a few days as a test, i might give my doctor a call in the morning and see what she says, i spoke to my doctor on the phone last week and she said she would be writing to my GI to tell him i needed some contact before may as things werent improving.

I was only taking the 8 steroids for a week and was told to reduce them by 5mg a week. Then when i saw my doctor last she said to start tapering them as they were mesing with my head, i was crying uncontrollably like a right wierdo in her office and think she wondered what the hell had wondered in lol. Some days i feel like i am improving and other days i feel right back at square one, i wouldnt mind so much if it was consistent. This is my 4th week off work and i only get paid paid full pay for another 2 weeks so thats another concern. Was meant to be watching foo fighters at wembley on Friday and i am not going to be able to go to that either, i think it is so hard to stay positive with this disease when there is so much worry and stress and lack of fun surrounding it!! grrr!!

Where in the midlands are you from?! I'm in Telford-shropshire, another reason to be gloomy haha xx

 

[Ian]

That might explain it - people often need at least 2 weeks at 40mg before they see any improvement! But I didn't take other side effects into account; I only get the annoying visual ones; moon-face, spots, weight gain etc. Oh, and insomnia and night-sweats sometimes lol. But they've never really affected me mentally, so if you were struggling emotionally on the higher doses that could be a problem :/ But maybe if your symptoms started improving they wouldn't mess with your head so much - it's got to be frustrating when you're getting all of the negative side effects and none of the positives.

Definitely get in touch with your doctor - I think, if you can stand it, you may need to give 40mg another, longer chance. Personally I would do this of my own accord (like you said you might) but I'm naughty. I'll be sensible and suggest you get your doc's permission first Have you been prescribed some kind of calcium supplement too? If not make sure you get that too (Adcal D3 or something). And do you always take your tablets at the same time of day? Routine might help your body adjust to them more easily.

I know exactly what you mean about consistency; my days vary so much at the moment. One symptom will improve while another declines and then the next day they'll all change up - don't know if I'm getting worse or getting better right now! It can take time. Sorry it's ruining your plans and stressing you out so much I worked for a year between two degrees (yep, one of those constant students haha) but didn't have ONE symptomatic day the entire time, so I've yet to experience the stress of not being able to do my job (must be horrible...). All my flares have happened at Uni - this current one is threatening to stop me graduating on time. It truly sucks!

Haha yeah I have a friend from Telford, she doesn't speak too highly of it! I'm from Warwick, equally dull lol. Meant to be in Bournemouth at Uni but no, I'm stuck here in bed watching way too much daytime TV. My hatred for Noel Edmonds intensifies by the day - and it's NOT the Pred, it's HIM haha.

I’m gonna have to go to bed now since I can’t sleep in when I’m flaring (I miss waking up at 12pm!), but make a plan for tomorrow about contacting your doctor etc and maybe it’ll help you relax a bit. Hope you can get some sleep and make some changes in the morning. Update this thread and keep me (and anyone else reading this) posted, I'm sure I'll be back tomorrow at some point

Hope you feel better soon! x

 

[Ian]

Any progress today?

 

[freespirit]

hey hey, well this morning i took 35mg of red, i think i felt a bit better when waking up this morning anyway but decided to take Dr Ian's advice and do this, so its your fault if it all goes wrong-dont worry im joking !! I dont have any calcium tablets, i asked my doctor about them and she said she wouldnt prescribe me them unless i was going to be on steroids long term :s I didnt ring her this morning but am due to ring her on friday so will request some then and add it to the rest of the pharmacy stock i am taking. I was even a geek last night and ordered pill box organiser so i can remember to take everything when i am meant to take it-GGEEEEKKKKKK!!!

Also i actually had a phone call about half an hour ago off my GI secretary telling me she had squeezed me in for an appointment on 2nd march at 4pm so thats next wednesday so hopefully will get some sort of information then? Is certainly better than waiting til may, she said she has left my may appointment in aswell in case i need a follow up. So feeling slighty more positive today.

How are you feeling today? Enjoying jeremy kyle? errgghh!! Ive seen the current episode that is on about 500 times!! Noel Edmonds? Cannot stand deal or no deal, although won £17 on the pub quiz game of it once lol!!

Bad about this stupid disease affecting your studies! I hope you can get back on track soon xx

 

[freespirit]

hey, well todya has been a good day, but ive had a couple lately and under no illusions, will see how tomorrow is, gonna continue with the higher dose of steroids until im feeling more confident, i can hear my appetite sitting on my shoulder screaming into my ear though!! Have you seen that new "toast me" advert with the little green monster thing snarling and randomly running round the kitchen looking for food?? (you tube if u havent lol) Well i feel like he is sitting on my shoulder! grrr!!

I'm gonna need my geek box, have loads of tabs to take at the moment and have got vitimins my nan bought me, and ordered some herbal stuff yesterday too, plsu if i get my calcium tabs there is NO WAY i will remember to take them all, in fact while writing this i realise i have not had my last asacol of the day (see!!!)

Jeremy kyle cheers me up, especially when im ill and feeling sorry for myself and thinking the only relationship i am ever going to have is with the white toilet upstairs, then i put jeremy kyle on and realise that isnt such a bad thought lol

Have you had a good day? xx

 

[Ian]

Glad to hear you had a good day yesterday, how was today for you?

Lol not seen the advert but my appetite is starting to rage a bit on the Pred too, I must resist! Even though Jeremy Kyle is a great reminder that life could be so much worse, I still can't stand it haha. Too much shouting in the morning - I prefer the quiet, inoffesnive property shows lol.

Yeah I continued to have a good day yesterday (ONE visit to the bathroom!) but today hasn't been very good so it doesn't look like I'm improving I'm on maximum drug therapy now, have been for 2 1/2 weeks and still passing bloody mucas with every b/m - it doesn't look like it's going to stop. Going under the knife is looking more and more likely...

 

[freespirit]

are you scared if you have to go under the knife? or is it what you want if it relieves your symptoms?

Today was a bit iffy to be honest and im suffering again with the emotional side of the pred, gonna try and hack it out though. Feeling a bit down like i know that im never going to quite be what i want, im never gonna quite reach my potential cos of this stupid desease!! one of those days, im sure ill get over it!!

Hope your ok xx

 

[Ian]

I am scared, yeah. Not so much about the actual process of surgery itself, more like how the recovery time is going to affect me completing my degree on time, having scarring and the possibility that it will negatively affect my bowel movements afterwards (although I'm told this is probably unlikely due to the part I'd be having removed). Like I said, I'm not even very symptomatic so the idea of needing to be cut open is a bit hard to take! If I was suffering I can imagine being desperate for the surgery, but I'm not... two trips to the bathroom today. Only two! That would be totally fine and normal for ANYONE if it weren't for the blood and mucas I passed with them lol. This flare is so strange....

Ah that's rubbish that it affects you emotionally so much! I've been on 40mg for nearly 3 weeks and other than not sleeping as deeply/for as long (and maybe a bit of water-retension?) I have NO side effects. Unfortunately I'm not really seeing any benefits either. Sorry to hear you've been having a bad day, I know it seems impossible but try to think to a point in the future when you're not in this flare - because it WILL happen! x

 

[freespirit]

I would be very scared going for surgery :-( Maybe some miracle will happen and the flare will clear itself up!!

I know what you mean about thinkin about a point when i am not in a flare but it just feels like im never gonna be able to make any plans just incase, snd i had some many dreams and ambitions and every single one of them is being thrown right back at me at the moment and feel like just giving up! Anyway, I am always so miserable eh? lol sorry!!

On the positive...............my geek box arrived today lol x

 

[Ian]

Don't beat yourself up for feeling miserable, you're bloody entitled! I'm in awe of the people on here that remain upbeat and positive in the face everything, but I sure as hell ain't one of them lol. I'm frequently having a paddy or a panic over it all, and occassionally a little weep in private... just has to be done sometimes, letting it out in some form is better than holding it all in

Glad your geek box arrived, hope it's now full of pills for the rest of the week lol.

 

[freespirit]

Thanks I am a negative person anyway if i am honest, things just never seem to work out, think i need to genuinely do something about gaining and more PMA!!

Well i have the box but got "ill" after going to see my nan this afternoon and havent had the energy to bbother doing anything with it!! I might do it now seeing as i am now wide awake with nothing to do lol x

 

[Ian]

I can be very negative too, it's not good But as a pessimist at least I'm always prepared for the worst, which means things normally turn out better than I expect them to haha. Never any nasty surprises when constantly expect things to go tits up! .

How're you feeling now? And have you sorted out your pill box yet?

 

[freespirit]

Oh i am glad you are here, i am soooooooooooooooo bored. Had a bit of a "iffy" afternoon and lay down for a while afterwards and woke up 3 hours later, so now i am wide awake and bored out of my brain with nothing to do lol.

I have sorted my pill box, i need to do it tomorrow for the next week though, its a good little contraption especially for someone with a forgetful mind like me!!

How are you? Have you done much the weekend? I am so bored of being stuck in the house, its depressing!! xx

 

[Ian]

Ah that sucks, well at least you're getting some sleep.

I was rudely awoken at 4am with the need to go to the toilet lol. Did manage to get back to sleep but can't sleep for as long as I normally can 'cause of the Pred. I'm used to getting up at 12pm and only eating breakfast and dinner. I'm now up at like 8am every morning, bored out of my mind because the days are so long, and eating more because I have to include lunch in my day now lol. And since I'm barely leaving the house I'm burning no energy, plus the Pred, so I feel like I'm getting fat. Think I might have to crack out the Wii Fit soon lol. My friend came over this eve though so that cured the boredom. Haven't done anything else though 'cause I don't really feel like leaving the house, I don't think I've been outside for about week! Definitely depressing! I'll have to go in the back garden with my cat or something just to get some sunlight haha.

Yeah a pill box is so useful, filling it will become your Sunday evening ritual! Do you feel better for having had some rest? You're seeing your GI soon aren't you? Hope you work something out.

 

[freespirit]

Yeah i am getting up throughout the night 3-4 times now which is much better and getting back to sleep but like you i am also waking up early, which is so frustrating. Again like you, i dont feel like doing nothing either, esepcially at a weekend, everywhere is soooo busy and it would just annoy me and stress me out!

I do feel better for having some rest, i didnt really have a choice, when i have my painful "passing" i have to go and lie down, and i dont mean to fall asleep cos i know i will be up half the night, but it zaps all my energy and i wake up a couple of hours later, i feel fine when i wake up, but then means i am up all night and the days are super long, so its like catch 22 lol!!

I'm seeing my GI Wednesday, will see how thats goes!! Any developments with you?? This pred is killing me today, i just cant stop eating!!!! its not good!! Doesnt help at the other end either does it!! lol x

 

[Ian]

Sounds like you're having a rough time but I'm glad it's a bit easier than it was, really hope you and your GI come up with an effective plan on Weds! Are you still on the increased dose of Pred? Yeah, it can give you the munchies! I had Chinese food tonight (I'm lucky, food doesn't really affect my Crohn's so I can basically eat what I want) but I feel like such a fatty I'm gonna have to fight the appetite from now on and be sensible!

The long days are the worst part for me, my mum works in a school and was on half term all this week but next week I'm gonna be home alone all day and don't want to be waking up so early! And it's not like I can sleep in the day to pass the time either, so annoying!

I'm pretty much the same - still feel fine in myself, still only going 2 times a day, but still passing blood and mucas when I go. Maybe less than before? Maybe not. I've thought that before and then had a day when I pass a lot. I think things are better than they were 2 weeks ago, but I feel like things may have improved as much as they're going to on this current regime. I'll be really interested to know what my GI wants to do next - I'd like to think there are a couple more steps to try before we cut me open! We shall see

 

[freespirit]

In comparrison to last week, i am feeling a lot better, but nowhere near right. I hope something gives a little on WEdnesday. I am still taking 35mg of pred, think im gonna stay on it until Wednesday at least when i see my GI. I am feeling ok in myself now whereas before i was feeling really ******, energy levels are still low but think thats more to do with the aneamia. I hope there is more they can do for you before surgery :-( I would feel at such a young age to be told i would have to have a surgery, and i have a couple of years on you !!

Well i am going to be off next week, stuck at home alone too, so if your bored you can talk to me xx

 

[Jennifer]

Surgery at a young age isn't so bad. I was 17 when I had mine and I think there are some people on here who had theirs younger than me or have had a couple before me. Main thing is to start feeling better when meds just aren't cutting it anymore. I actually think I was less scared about my surgery when I was younger cause I didn't even think about all the possible complications. Had I known anything I would have told my parents that I was throwing up that night I went home instead of waiting it out until my stitches broke open from the infection.

I was on high doses of Pred (75mg) and some other steroid along with 6MP (also 75mg) and Asacol for about a year till they called it quits and went for surgery. They couldn't give me anymore meds for my weight and body size and a lot of drugs weren't out back then. Makes me sound old. Gonna be 29 this April and still in remission though!

 

[Ian]

Ugh yeah the anaemia can be really annoying. Are you on iron supplements? If not you should ask your doc about getting some. I've gotten anaemic in the past but this time I started taking iron as soon as the bleeding began, so even though I've been passing blood since November my iron stores are normal which is good. I'm sure I'll be on a lot so will probs catch you here

I do think the blood and mucus has reduced over the last 4 days, but it's hard to say... and I'm fully expecting it to increase again as these little periods of supposed improvement have occurred before and after getting excited about it I've ended up getting a nasty surprise. But overall, I do feel better than I did, so hopefully that counts for something. As much as I don't want another flexi-sig (it aggravates the inflammation for a couple of days), they might have to do another one to be sure if things are improving or not - I can't really tell them!

I agree Crabby, there's no point avoiding surgery if it's clearly the answer. The annoying thing is I don't really FEEL unwell and I'm trying to complete a degree by June, so it's really not a good time! (not that it ever is lol). I also don't think I'd have your luck with remission - my inflammation bounces around all over the place so it's likely it would crop up else where in my colon as soon as the currently diseased part was cut out I like hearing that you've had so much success with your surgery though, and it's good of you to frequent this forum and offer support and advice even though you're not suffering from the disease at the moment (and hopefully never will again!). I will promise not to be one of those people that completely bails when they're not flaring haha.

 

[Jennifer]

I like hearing that you've had so much success with your surgery though, and it's good of you to frequent this forum and offer support and advice even though you're not suffering from the disease at the moment (and hopefully never will again!). I will promise not to be one of those people that completely bails when they're not flaring haha.

Sites like this weren't around when I was going through all that and the internet wasn't even around when I was first diagnosed. I have experience with older medications that are surprisingly still being prescribed today and I know how it feels to have no one to talk to so I feel that everyone, whether you're flaring or are in remission right now has knowledge that others out there would love to hear.

I also think its important to talk more about what remission means for each individual, as in, do you still have symptoms at all? The answer to that is yes but having symptoms does not mean you're flaring or are even in a mild flare. I take maintenance drugs and sometimes inflammation pops up here and there but goes away on its own due to the medication I'm taking (right now just 50mg of 6MP). It'll affect my BMs or give me joint or back pain from time to time. And its important to see your GI regularly even if you aren't having symptoms be it once a year or every couple of years and get lab work done according to what medications you're taking be it once a month (like me because of the 6mp) to a year etc.

I hope no one bails from the forum whether they are in remission or not because we need all the information we can get and even I'm still learning from you guys about all these new medications just in case I start flaring again and so I know what I'm getting myself into. I never knew what I was taking before and never understood why the medications made me feel or look a certain way. I was just a kid doing what I was told back then.

I'm sorry to hear that you're being affected in more than one area. I guess I was lucky in a way. But like you said, if a section needs to come out then it needs to come out. So if you need another surgery then you need another surgery. I knew a boy who was in the hospital at the same time I was and he had to have multiple sections removed. We never kept in touch (a 9 year old and 10 year old? Come on! ) but I've always wondered how he's doing now. He was one of the ones on the verge of death before they decided surgery was the answer. I think he had his first surgery when he was 10 and the second a couple years later (my mom kept in touch with his mom for a while). He may have a stoma now but from what I heard from a few people on here is that a stoma is a God send practically. I used to fear having one until I came to this forum.

Sorry I kind of ramble a lot. I guess there's just a lot to say.