Im always so tired and have no energy... any suggestions?

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Glasgow
Hi there

I Have Crohns-Colitis and i am on ASACOL HD and AZATHIOPRINE every day. for the last few years ive literally had no energy and i want to do is lie down. im not even a great sleeper at night but i just feel like im constantly in a tired zombie like daze.

Does anyone have the same thing or HAD the same thing. and is there anyone with any suggestions on how i can get more energy.

Im a 29 year old guy and i feel like an 80 year old man.

Thanks

Nicky
 
Have they checked you for anemia? I was dead tired for two years while I fought low iron and ferritin.
 
That sounds very familiar. The winter messes with me a lot. I think seasonal affective disorder or it being dark definitely affects my energy. I have a bag now so i don't worry about the toilet anywhere near as much, i used to get an hours sleep a night maybe. Crohns is just generally really exhausting. Do u drink allot? I try not to but i do regularly and heavily and that definitely makes me sink into myself.

Things i do. I try to eat well and make sure i have b12 supplements you can get them from holland and barrett. I walk places i find that clears my head. Having stuff to do helps me sleep better, cause i'm not well enough to work i do some voluntary which helps allot. No change can be exhausting. I try not to care to much about things and be more easy going otherwise everything winds me up like living in a flat where the walls are paper thin and having to listen to people bickering constantly. On the flipside a bit of catharsis and madness can bring me to a comfortable rest. I live in newcastle which is quite similar to glasgow in some ways and newcastle alone is enough to do anyone's head in. Dont get me wrong i love it here but its like with family i have the right to criticise them. I think in this condition your always trying to get just a normal amount of sleep. When your feeling slightly better try and get something done and dusted.

Routine helps. Try not to muck up your sleeping pattern because i know it takes meway longer than everyone else to recover. Laughter is good obviously https://www.youtube.com/watch?v=DZthGdjGX0E thats a show called burnistoun which made me laugh alot based in scotland
 
Have they checked you for anemia? I was dead tired for two years while I fought low iron and ferritin.

Hi Jen

Yeah ive been checked. i was low but not worryingly low. i was given ferrus sulphate tablets but they made no difference. my iron gets taken every fortnight and the doctor hasnt mentioned me being anaemic.

I always say i will go to the gym after work but by the time it hits 4pm, all i want to do is lie down on my couch. feels like i have no motivation or energy.

Nicky
 
That sounds very familiar. The winter messes with me a lot. I think seasonal affective disorder or it being dark definitely affects my energy. I have a bag now so i don't worry about the toilet anywhere near as much, i used to get an hours sleep a night maybe. Crohns is just generally really exhausting. Do u drink allot? I try not to but i do regularly and heavily and that definitely makes me sink into myself.

Things i do. I try to eat well and make sure i have b12 supplements you can get them from holland and barrett. I walk places i find that clears my head. Having stuff to do helps me sleep better, cause i'm not well enough to work i do some voluntary which helps allot. No change can be exhausting. I try not to care to much about things and be more easy going otherwise everything winds me up like living in a flat where the walls are paper thin and having to listen to people bickering constantly. On the flipside a bit of catharsis and madness can bring me to a comfortable rest. I live in newcastle which is quite similar to glasgow in some ways and newcastle alone is enough to do anyone's head in. Dont get me wrong i love it here but its like with family i have the right to criticise them. I think in this condition your always trying to get just a normal amount of sleep. When your feeling slightly better try and get something done and dusted.

Routine helps. Try not to muck up your sleeping pattern because i know it takes meway longer than everyone else to recover. Laughter is good obviously https://www.youtube.com/watch?v=DZthGdjGX0E thats a show called burnistoun which made me laugh alot based in scotland

Hello there

Thanks for your great reply. i have seen burniston a few times, its really funny.

I work 5 days a week but by the time i get home im drained. even though my job is mainly office based now, i feel mentally drained.

im starting to wonder about coming off medication... would i get my energy back.. but would i end up having a flare up?

one thing i know certain is, i cant keep going the way im going. i have no energy for anything. im only 29 and should be doing things i enjoy

Nicky
 
Aw thanks for that :)

Just want to get my energy back to what it was. Im not a lazy person mentally but physically im becoming lazy lol
 
If youve still got some fitness get on it. I find its hard to find motivation if im just excercising cause i'm just running around for no reason and my brain complains. Football though that's a different matter. I used to love 5 aside. My mate still does it through a work leauge and he always looks loads better after. Dont mind excercising when its fun and if youve still got the energy itll clear your head 2
 
Hi there

I Have Crohns-Colitis and i am on ASACOL HD and AZATHIOPRINE every day. for the last few years ive literally had no energy and i want to do is lie down. im not even a great sleeper at night but i just feel like im constantly in a tired zombie like daze.

Does anyone have the same thing or HAD the same thing. and is there anyone with any suggestions on how i can get more energy.

Im a 29 year old guy and i feel like an 80 year old man.

Thanks

Nicky
What is your diet like?
 
I feel like that quite often, and I don't really have a solution. I often feel mentally exhausted at the end of the work day. By the time I get home from work (and possibly attend whatever social function I have that evening), I just want to put on my pajamas and sit in bed until it's time to sleep. I go through all week looking forward to the weekends, and then I just want to relax. When I get a break, I have trouble making myself do all the things I need to do -- like housework.

I was anemic and had pretty low B-12. For awhile I felt like I couldn't remember things 2 seconds after I thought of them. Both my levels are now normal, and I've noticed I'm not forgetting things as often, but the fatigue continues.

Sometimes I wonder if I'm just allowing myself to be lazy, but other times I don't think I can do anything but zone out.

There have been a few things that haven't necessarily improved the situation, but have at least helped me manage it. I started tracking my sleep with a Fitbit device. A lot of nights I would stay up late for no reason, and then it would take me days to recover. So I've set a monthly average that I want to hit and it helps me focus on getting more rest at night and becoming aware of my sleep patterns.

Also, I started planning days where I don't schedule anything else. I used to look at my calendar and have only 3 free evening weeknights/weekend days for a whole month. Now I make sure I schedule in at least one weeknight with nothing else after work and one totally free weekend day each week. I really shoot for two free weeknights a week, at a minimum. If my friends want to do something, I just tell them I have plans that night. (Hey, doing nothing can be a plan!) Then we reschedule for another time.

I don't know if any of these will help. My fatigue seems to be pretty "functioning". I'm able to do a lot, but I get wiped out and it takes me a long time to feel "normal" after a really busy week, a rough work day, or a night with little sleep.

EDITED TO ADD: It seems like no matter how much sleep I get, I still have trouble waking up and getting out of bed. And I'm 31, so I know what you mean about not wanting to feel this way!
 
Hi Nicky

I know what you mean. I am on Asacol and I feel like I hit a wall of tiredness nearly every day. Some days I feel unbelieveably tired I am probably a danger to myself and everyone else. I don't know if it is a side effect of Aza as well.

Glasgow at this time of year might be cold, dark, and bracing. Still, I would say try and go outside for a walk when you can. More vigourating than the gym, and probably less daunting. Find a mate to have a wander with or explore a street or area you don't know so well. Maybe during the day when you do have bit more energy.

Have you had your vitamin D checked too?

Hang on in there, it could be a seasonal thing too and spring is on it's way I promise. :sun::Flower:
 
My fatigue seems to be pretty "functioning".

I guess that puts me in the "non-functioning" category. I can't work, or do much really, though fatigue is only one of the reasons for that, but possibly some of the things that help me deal with exhaustion can be applied to those working, socialising, etc.

Sleep - Good sleep is absolutely vital, try medication if symptoms or anything else is stopping you sleeping at night (not all sleep meds are addictive). Naps during the day are very important to me as well. My sleep is sacred to me. I don't just feel bad physically if I've not had enough sleep, I can't think straight and get in a bad mood. Usually I sleep about nine hours at night and have a one hour nap in the day.

Routine - Keep to a routine, and as far as possible, try to plan your day round your energy levels. E.g. I get tired and often need to nap after meals, and I've seen other people here mention this before as well. I'm also very much a morning person, so I get up early in the morning, go to bed early at night. I go out in the morning if possible, e.g. I go outside with my dog earlier in the day. If you can work out how your energy fluctuates, and what causes the fluctuations, plan round them as far as the flexibility of your schedule allows.

A few other tips I've found: if you're cold, you may feel more tired, so try to keep warm. Medications, as you mention, can kill your energy or give you too much of it, depending on the med in question (prednisone is an example of the latter, for me). Mental stress, and emotions generally, affect energy, though the effects vary from one person to the next. Not eating enough is very likely to cause tiredness. Fresh air can wake you up. Exercise (whatever that means for you - for me it means a slow amble with my dog) often gives an immediate energy boost, though not if you're truly exhausted, then only sleep will do.

I would think sleep would be the most important thing for you to focus on, Danico. If you're not getting that right, it will be hard to find energy during the daytime. What stops you sleeping well?
 
I guess that puts me in the "non-functioning" category.

:D I didn't know how else to say it. My fatigue, fortunately, is not debilitating, but still present. I know fatigue can run the gamut from being mildly annoying to putting people out of commission -- just like Crohn's!
 
What is your diet like?

Hi Poppy

I will be honest, my diet isnt great. infact its pretty bad

i will give you a wee example of an average week

Breakfast - Crunchy nut cornflakes

Mid-Morning - Bananna or Tangerine

Lunch - A sandwich on turkey or chicken with coleslaw / Yogurt and tangerine

Dinner - Chicken/ Chips / Peas

and i snack on maybe 1 packet of crisps and 1 bar of chocolate per day.

- i only drink water during the week (maybe a couple of cups of green tea)


At the weekend i go out drinking one of the days and probably drink alot of fizzy juice and have 1 take away (i really let myself down at the weekend)

Nicky
 
I feel like that quite often, and I don't really have a solution. I often feel mentally exhausted at the end of the work day. By the time I get home from work (and possibly attend whatever social function I have that evening), I just want to put on my pajamas and sit in bed until it's time to sleep. I go through all week looking forward to the weekends, and then I just want to relax. When I get a break, I have trouble making myself do all the things I need to do -- like housework.

I was anemic and had pretty low B-12. For awhile I felt like I couldn't remember things 2 seconds after I thought of them. Both my levels are now normal, and I've noticed I'm not forgetting things as often, but the fatigue continues.

Sometimes I wonder if I'm just allowing myself to be lazy, but other times I don't think I can do anything but zone out.

There have been a few things that haven't necessarily improved the situation, but have at least helped me manage it. I started tracking my sleep with a Fitbit device. A lot of nights I would stay up late for no reason, and then it would take me days to recover. So I've set a monthly average that I want to hit and it helps me focus on getting more rest at night and becoming aware of my sleep patterns.

Also, I started planning days where I don't schedule anything else. I used to look at my calendar and have only 3 free evening weeknights/weekend days for a whole month. Now I make sure I schedule in at least one weeknight with nothing else after work and one totally free weekend day each week. I really shoot for two free weeknights a week, at a minimum. If my friends want to do something, I just tell them I have plans that night. (Hey, doing nothing can be a plan!) Then we reschedule for another time.

I don't know if any of these will help. My fatigue seems to be pretty "functioning". I'm able to do a lot, but I get wiped out and it takes me a long time to feel "normal" after a really busy week, a rough work day, or a night with little sleep.

EDITED TO ADD: It seems like no matter how much sleep I get, I still have trouble waking up and getting out of bed. And I'm 31, so I know what you mean about not wanting to feel this way!

Hi Amy,

Thank you for your nice reply.

Mines is pretty similar. Im not weak to the point i cant move etc. I work every day and im required to walk around a little and a wee bit of climbing onto boats and stuff so im not totally bed bound or anything. i just feel mentally and physically drained alot of the time. and at the weekend i can find myself in my bed the full day on saturday and most of the day on sunday because im really drained.

I feel like i am missing out on alot and i should be out having fun more often and going to the gym but cant because all i want to do is laze about :(

Nicky
 
Hi Nicky

I know what you mean. I am on Asacol and I feel like I hit a wall of tiredness nearly every day. Some days I feel unbelieveably tired I am probably a danger to myself and everyone else. I don't know if it is a side effect of Aza as well.

Glasgow at this time of year might be cold, dark, and bracing. Still, I would say try and go outside for a walk when you can. More vigourating than the gym, and probably less daunting. Find a mate to have a wander with or explore a street or area you don't know so well. Maybe during the day when you do have bit more energy.

Have you had your vitamin D checked too?

Hang on in there, it could be a seasonal thing too and spring is on it's way I promise. :sun::Flower:

Hi there

Thanks for your reply

Its hard for me to do much during the day because of my job. when i go to work its dark and miserable and when i come home its dark and miserable haha

Ive not had my vitamin D checked... whats that?

Nicky
 
Hi!

I was feeling exactly like you - like I had become an old woman before my time. I was on Mezavant and Azathioprine and had been free of bowel symptoms (except for looser stools than before getting ill) but had been feeling very lethargic and reluctant to do anything because it felt like such hard work.

My consultant agreed to a trial stopping of the Mezavant and it has made a real difference. I no longer feel like everything is such an effort and stools are actually back to pre-disease state - it was the Mezavant causing them to be looser.

I will stay on the Azathioprine for the foreseeable future.

I don't suggest you do anything without your doctor's approval, but dropping the mesalazine has certainly helped me and it's definitely worth considering.

Good luck!

Nitty
 
Hey Nitty

So are you not taking any anti-inflammatories atall then?

My biggest problem is not being able to do the toilet. i get constipated alot and sometimes im straining alot on the pan which makes things worse and causes bloody pencil like stools.

i take 1-2 movicol (mild laxitives) a day to make it more loose. so im worried if i come off the anti-inflammatories then it will be even more difficult to do the toilet

Nicky
 
I guess that puts me in the "non-functioning" category. I can't work, or do much really, though fatigue is only one of the reasons for that, but possibly some of the things that help me deal with exhaustion can be applied to those working, socialising, etc.

Sleep - Good sleep is absolutely vital, try medication if symptoms or anything else is stopping you sleeping at night (not all sleep meds are addictive). Naps during the day are very important to me as well. My sleep is sacred to me. I don't just feel bad physically if I've not had enough sleep, I can't think straight and get in a bad mood. Usually I sleep about nine hours at night and have a one hour nap in the day.

Routine - Keep to a routine, and as far as possible, try to plan your day round your energy levels. E.g. I get tired and often need to nap after meals, and I've seen other people here mention this before as well. I'm also very much a morning person, so I get up early in the morning, go to bed early at night. I go out in the morning if possible, e.g. I go outside with my dog earlier in the day. If you can work out how your energy fluctuates, and what causes the fluctuations, plan round them as far as the flexibility of your schedule allows.

A few other tips I've found: if you're cold, you may feel more tired, so try to keep warm. Medications, as you mention, can kill your energy or give you too much of it, depending on the med in question (prednisone is an example of the latter, for me). Mental stress, and emotions generally, affect energy, though the effects vary from one person to the next. Not eating enough is very likely to cause tiredness. Fresh air can wake you up. Exercise (whatever that means for you - for me it means a slow amble with my dog) often gives an immediate energy boost, though not if you're truly exhausted, then only sleep will do.

I would think sleep would be the most important thing for you to focus on, Danico. If you're not getting that right, it will be hard to find energy during the daytime. What stops you sleeping well?



Hi UnXmas

I go to my bed at 11pm during the week and sometimes im lying awake at 1am still tossing and turning. But i would say the majority of the time im sleeping about midnight. then i probably wake up once a night then it takes me about 20 mins to fall asleep again. Then im up for work at 5.45am... then when i get home from work, i have my dinner and usually have a nap between 5.30-7pm.

So it may be down to my sleep pattern.

Nicky
 
Yes Nicky, I'm just taking azathioprine now. I don't think the anti inflammatories did much to help anyway as it was whilst on them that I had my second flare (after never really recovering from the first one) and it was only a course of Pred and getting onto Aza that seems to have done the trick. The docs just wanted to keep the mesalazine going as back up and to help guard against future bowel cancer, but the side effects (as I now know) weren't worth it.

I have to say I did get a bit bunged up at first when I stopped the Mezavant, but it then stabilised to my 'pre-disease normal' - I even queried whether the Crohn's diagnosis was certain, but apparently there is no doubt it is CD. My official diagnosis is Crohn's Colitis, so I don't know if this is different to your own and therefore you may react differently to the treatments.

I've just modified my diet and make sure I drink more and get a higher amount of fibre as my guts allow. I've even been able to have a small amount (not too much) of popcorn at the cinema, which was a complete no-no before!
 
Hi Nitty

Do you feel when you came off the mezevant that you got your energy back?

Do you know any reasons why the mezevant (and asacol) would sap peoples energy?

I dont know if the asacol im taking is even working because when i go to the toilet, they seem to be fully formed in the pan.

Nicky
 
I had been feeling really old before my time and also prone to joint pains, and the Mezavant listed muscle and joint problems high up on the info about side effects, so this was the main reason for me stopping it. It hasn't really done much for my joints, but I definitely feel more like my old self (or should I say younger self) in general energy. I think 'weary' would be a good word to describe how I felt before, and that has gone.

I'm no spring chicken (I'm 44) but even my consultant said I shouldn't be attributing things to old age yet!!

I really don't know why the drug would have this affect. It could be a chemical thing, or maybe I just wasn't absorbing everything I needed.

Also, I don't know that formed stools means that the Asacol isn't working, as I don't think everyone gets the same 'loosening' effect from the drug, although I have heard some people have to stop Mezavant because it can cause diarrhoea sometimes.
 
Hi Poppy

I will be honest, my diet isnt great. infact its pretty bad

i will give you a wee example of an average week

Breakfast - Crunchy nut cornflakes

Mid-Morning - Bananna or Tangerine

Lunch - A sandwich on turkey or chicken with coleslaw / Yogurt and tangerine

Dinner - Chicken/ Chips / Peas

and i snack on maybe 1 packet of crisps and 1 bar of chocolate per day.

- i only drink water during the week (maybe a couple of cups of green tea)


At the weekend i go out drinking one of the days and probably drink alot of fizzy juice and have 1 take away (i really let myself down at the weekend)

Nicky
Well, if it's possible and you can handle it, start experimenting with different diets, taking things out, put them back in. Start tweaking your diet now. I'm sure you've heard this thousands of times here, but DIET IS IMPORTANT!!!!!

Start taking out the common things that seem to give most people problems (milk, red meat, gluten). One of these ingredients may be SERIOUSLY effecting you. See if it has any effect, you don't have to go all out paleo or anything, although I personally did everything I could possibly think of. and it's still not perfect, but the results in my blood work have PROVEN that my dietary changes have effected me. I'm currently in sushi/ corn taco mode right now. Literally just that. I have a thread made in the diet/fitness section. My hemoglobin, hematocrit are now at levels I haven't witness in a long time. My CRP has gone 4.5 6 months ago to 0.15 now. I have the blood work to prove it.

Not saying what I do is going to work for you but you have to at least make an effort with your diet. You may surprise yourself with how much better you feel.
 
Hi there! Sorry if I missed it, but have you had any scopes recently? Wondering how your inflammation levels are - inflammation can show up on biopsies even if lab inflammation levels are "normal" and you aren't having symptoms. Interesting article on importance of endoscopic findings linked in this thread: http://www.crohnsforum.com/showthread.php?t=70582

I second the "figure out what works for you diet-wise" advice. Fatigue has been my ongoing complaint for years. (Labs all normal - except I don't think my Vit D has been checked so I'm going to ask for that with my next round. Colonoscopy visually clear and biopsies only showed one area of "mild microscopic" inflammation.) Last year I got fed up with the fatigue and my then-GI not offering any real strategies, so I've made a lot of changes over the course of about the last 10mths.

Some things that seem to make me feel better:

Bone broth and sauerkraut -
http://www.crohnsforum.com/showthread.php?t=44473
http://www.crohnsforum.com/showthread.php?t=69814
External link with sauerkraut recipe: http://www.theprairiehomestead.com/2015/02/how-to-make-sauerkraut.html

Fermented cod liver oil/"butter oil" supplement

Magnesium - I make a spray out of magnesium chloride flakes and distilled water (equal parts, dissolve mag in boiling water), and spray on as much as I can tolerate on my arms/legs/stomach before sleeping. Stings like crazy. I would totally give this up in a heartbeat if I hadn't started feeling better soon after starting.

Trace minerals - got a liquid form and add it to food and broth (too bitter for me to drink straight in water).

Gentle stretching/alignment exercises, walking

I've added/changed things gradually. It can be exhausting to change too many things at once especially as you are working all week! With my type of Crohn's it seems that as my meds kept my gut symptom-free and blood work didn't show anything deficient (again, going to check on my vit D), I had to just try things and see what would help.

Good luck to you - fatigue is just miserable.
 
Hey Nitty

So are you not taking any anti-inflammatories atall then?

My biggest problem is not being able to do the toilet. i get constipated alot and sometimes im straining alot on the pan which makes things worse and causes bloody pencil like stools.

i take 1-2 movicol (mild laxitives) a day to make it more loose. so im worried if i come off the anti-inflammatories then it will be even more difficult to do the toilet

Nicky


First off, I wanna say I know the feeling. I'm 22 and have problems with energy on and off again. And it sucks being in your 20s going to a bar on the weekend having a 50 something woman dancing like crazy in the corner and you just want to go home and go to bed. Second I have the problem with constipation and can tell you when I take a good **** after a week of constipation I immediately get my energy back. And I think your energy problems stem from that. So here's my answer for you. SUGAR-FREE GUM! An entire pack a day until youre regular again then taper down to a few pieces a day. A little secret I learned. The main ingredient in sugar free gum is called Sorbitol (it'll be the first listed on the back of the pack). It's a laxative (They use it in place of sugar as the sweetener). Now a regular laxative (saline, pill, etc.) is harsh and you risk flaring up. But in gum sorbitol is a)not very harsh. and b) in very low doses (Since stride, etc. would go out of business if all their customers were glued to the toilet). Most chewing gum these days are sugarless so you have a range to choose from too (Stay away from Wrigley's they use sugar). P.S. Drink plenty of water. Sorbitol takes extra water and directs it to the colon. So if you're dehydrated it doesn't quite work as well.
 
Thanks very much for your response Jordanasquith

Im completely at one with your reply.

I feel like sugerfree gum and sugerfree polo mints definetly work as a laxitive.

My main issue is actually getting started on the pan. i feel like the first bit of stool is ALWAYS dry and hard to get out and usually ends up with me straining lots and that causes blood then causes my day to be ruined.

during the week i go to the toilet once per day. if my work involved me moving around then i would be going much more but because im stuck at a desk im fine. usually when i get home from work thats when i do the toilet and its like throwing a dice to what kind of time im going to have. i feel like its a result when i dont see any blood (most IBD'ers, probably know that feeling)

Nicky
 
I haven't read all responses so apologies if this has been covered, but have you had a followup colonoscopy to see if you are in remission and healing? I know after I hit remission it took a little while to get back to 100%. I think it was because my body was in a state of healing and repair. Something else you should watch is your mental health. I had depression, anxiety, all kinds of bad stuff as a result of crohn's. Feeling tired all the time could be a sign of depression.
 
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Hi there

Vitamin D is the "sunshine vitamin". The vitamin D is made by the body during exposure to the sun. It is an important vitamin for lots of different body functions, including calcium absorption and regulation of the immune system. I am not going to pretend to be an expert on it.

A lack of vitamin D seems to be linked to diseases such as inflammatory bowel disease (I've seen more about this on the forum) and multiple sclerosis.

Not enough vitamin D can also cause lethargy and fatigue. The doctors here in the Netherlands are quite switched on about it and test it if people say they are tired and have no energy. In fact they recommend a supplement of 10ug a day for most of the population, and more for the over 50s.

Needless to say anyone in Scotland probably does not get enough vitamin D from sunshine (even if it is sunny it is not strong enough). For example, the rate of MS is much higher in Scotland than the south of England. The correlation of sun hours with disease has been shown in other countries too.

The good news is that you can take vitamin D as a supplement (I take a teaspoon of vitamin D oil suspension, completely tasteless). A 2 week holiday in the sun would not be enough for the long term, I'm not sure you get that on the NHS.

When my last flare started the doc said my vitamin D was the lowest value she had ever seen. Coincidence? She gave me a high dose treatment for a month and since then I have been taking a vitamin D supplement - and still my vitamin D came back as just below normal.

Ask your GP for a vitamin D blood test, and check out the forum here for opinions on the dosing (some people suggest that if you have IBD you might need a higher supplementary dose than the normal population, but be aware of the maximum doses too).

It's worth checking out, even if it helps a little bit. Good luck!
 
I have struggled with fatigue myself for about 6 months now. I have low iron levels and was on humira. Right now I'm not taking any medication for crohn's, I'd had enough of it and decided to have a break even if just for a while.

No flare ups yet, I've been able to control it with diet so far, but I still need to get my iron levels up. The iron tablets didn't agree with me at all.
 
Well, Nicky, I spoke too soon!

Shortly after my first post on your thread I noticed a teeny weeny trace of blood. Unfortunately it hasn't been a one off and there is a little more there every time I go now. Not a lot, but enough to make me a bit concerned after being blood free for over a year before that, and I can tell that it's not just piles or any other local trauma like that.

So DON'T follow my example with regard to dropping the mesalazine - I may be having to go back on it myself!!

Thoroughly p---ed off now!

Nitty
 
Hi Nitty

Im sorry to hear about that. Ive never tried coming off meds as yet. dont get me wrong, i have thought about it. But im too scared incase i get a massive flare up.

Every time i get traces of blood i start to worry because i HATE getting put back onto steroids. They make me put on soo much weight. and it always happens after i have worked so hard to loose the weight. Its a gutter.

Recently ive noticed its been much harder to go to the toilet. i know its there but my bowels will just not move or the stool isnt soft enough to pass through my inflammed arse-hole haha (sorry)

Nicky
 
Maybe a "squatting stool" / "squatty potty" type thing would help? Or extra phone books to prop you feet up? I'm not flaring but getting into a more "squatty" position helps things move along better for me at least.
 
Hi Nicky
Just checking up on you - are you feeling more energetic now? And did you find out about your Vit D levels?
Hope you're OK!
 
Hey King of Orange

Sorry not been on lately.

Thanks for your concern, its appreciated.

Although there has been a very slight improvment. Im still as tired. i bought a treadmill and weight bench for my flat in the hope that it would help re-energise me. it does for a bit and makes me really tired at night which in turn helps me sleep better but the next day im like the walking dead haha

i dont like complaining because i know there are people on here far worse than me but i just need some sort of boost :)

Thanks again

Nicky
 
do you have some activities that passionnate you? anytime I get passionnate about something I do, i feel full of energy and forget all about my ''problems''. sometimes we have to create passions and take a step into something new in order to avoid becoming bored, which increase the feeling of fatigue. We often become passive in front of the tv and that I belive is pretty bad for energy level, brain and physical activity. i really try to avoid tv as much as possible.
I do computers, but its mostly for my reasaerch and knowledge about IBD, which motivates me, other than that I dont like it so i avoid computers and all electronic gadgets.

also as previously said, check vitamin level such as B12.

I have also read your typical diet and I wonder if you get enough calories in that for a full day? im a small woman and I seem to eat more than you...
 

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