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01-20-2014, 04:42 AM   #31
Spooky1
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None of us seem to have a cure, we're all suffering. The fatigue seems to be one of the worst symptoms of crohns. We are all suffering with you, Kauffman.
01-25-2014, 10:25 PM   #32
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Don't know what to do with a 40 hour plus work week and a cleaning job while all I want to do is sleep!

Started seeing a GI doctor for the first time in 7 years after diagnosis of Crohn's Disease.

Take all the right natural supplements, foods, and sleep habits. Any type of help for this chronic tiredness??
Start with the complete blood check... as a precaution. I had my doctor test anything and everything... I even had a sleep test... but no dice.

If it turns out to just be the exhaustion we all experience from our bodies constantly attacking ourselves... it really becomes more about sleeping and rationing energy... its no fun at all.. but that's what I've had to do.

Eating well helps me mentally a bit..., but the fatigue just doesnt go away... it just always lingers... its only gone when Im on prednisone.
01-26-2014, 06:00 AM   #33
Spooky1
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I was on steroids for 9 years solid many years ago. I had no fatigue issues as far as the whole mind and body is concerned. I cannot shift the complete lack of muscle energy. I have issues just doing anything physical and my mind is objecting to thinking correctly and at a normal speed to keep up with what people are saying to me. But I'm pleased I'm not the only one.
01-26-2014, 08:49 AM   #34
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Newbie here, but not with respect to my Crohn's (30 years of dealing with it, since Age 12). I've read through everyone's personal experience, but mine seems to be somewhat different. I never seem to get enough restful sleep. My average is 4hrs 5mins and I wake up about 10 times per night, a couple times I get out of bed to urinate as I drink so much (no way to stop it due to dehydration issues). I have no large bowel, but do have an ileostomy that usually carries me through the night.

My issue is that I am falling asleep while driving now, which scares the heck out of me. When I get that feeling of extreme fatigue, I try pulling over, napping on the side of the road or walking around the car to get blood flowing. It seems to help sometime, however other times its a 5 minute fix and then I return to my previous state. The sad part is that I live in a small rural town and commute an hour+ in to work and an hour+ home each day. My days are long, as my alarm goes at 5:30am, I leave for work at 6:15am and usually get home between 5:30pm-6:00pm.

I have osteoporosis (thanks to 20 years of prednisone use) and take morphine to deal with constant discomfort in my spine. I find lately that things are getting worse as I have nights with net sleep of 2.5 - 3.5 hours now. I even took Friday off this week for fear of dying (worried I would fall asleep and run off the road or in to someone).

I'm now in somewhat what of a dilemma. If I talk to my doctor about my sleep issues and how its affecting me, I run the risk of losing my license, which in turn prevents me from working. If I don't tell her, I may end up losing both my life and someone else's if I get in an accident.

I'm in Ontario, Canada. I'm trying to decide what I should do, bearing also in mind I have a mortgage and car loan that needs to be paid. One option is to take sick leave and collect Employment Insurance, then I would have up to 15 weeks of paid leave to get my sleep issues sorted out. This is assuming my doctor provides the necessary note.

Am I alone in my fatigue issues or are their others that just don't sleep enough and that, combined with Crohn's nutritional issues is tough to deal with?

Thanks!
01-26-2014, 09:11 AM   #35
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I know exactly how you feel. I can't seem to ever get enough sleep. I too live in a rural area. I am fighting to get disability because of the fatigue and concentration issues. I rarely drive, having my spouse or daughter take me where I need to go. I was telecommuting, but my company moved its HQs and is not permitting telecommuting anymore. It is a 2 1/2 hour drive each way. I have been without pay since November, adding more stress as I juggle payments with just spouse's pay (a fraction) of mine) and help from my kids as they can. Since I don't know the Canadian system, I can only commiserate and not advise. Just know you're not alone.


01-26-2014, 10:16 AM   #36
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My issue is that I am falling asleep while driving now, which scares the heck out of me. When I get that feeling of extreme fatigue, I try pulling over, napping on the side of the road or walking around the car to get blood flowing. It seems to help sometime, however other times its a 5 minute fix and then I return to my previous state. The sad part is that I live in a small rural town and commute an hour+ in to work and an hour+ home each day. My days are long, as my alarm goes at 5:30am, I leave for work at 6:15am and usually get home between 5:30pm-6:00pm.

I have osteoporosis (thanks to 20 years of prednisone use) and take morphine to deal with constant discomfort in my spine. I find lately that things are getting worse as I have nights with net sleep of 2.5 - 3.5 hours now. I even took Friday off this week for fear of dying (worried I would fall asleep and run off the road or in to someone).


I'm now in somewhat what of a dilemma. If I talk to my doctor about my sleep issues and how its affecting me, I run the risk of losing my license, which in turn prevents me from working. If I don't tell her, I may end up losing both my life and someone else's if I get in an accident.

I'm in Ontario, Canada. I'm trying to decide what I should do, bearing also in mind I have a mortgage and car loan that needs to be paid. One option is to take sick leave and collect Employment Insurance, then I would have up to 15 weeks of paid leave to get my sleep issues sorted out. This is assuming my doctor provides the necessary note.

Am I alone in my fatigue issues or are their others that just don't sleep enough and that, combined with Crohn's nutritional issues is tough to deal with?

Thanks!
I think you know that the short-term solution has to be to stop driving. Whatever financial problems it brings, they will not come close to being as bad as you will feel if someone else is injured or killed if you fall asleep while driving.

I know it's not as simple as that - the fact that it's possible you may continue driving without hurting yourself or anyone else means that in reality it's not a clear-cut choice.

Maybe you should investigate with a doctor whether something else can be done to manage your discomfort and pain. You won't necessarily have to broach the driving issue right away, just explain the pain and the resulting insomnia.

You have two options to approach this, though you can try both: tackle the pain or try to sleep through the pain.

There are some great meds to help you sleep. Usually I'm the opposite - I can sleep anytime, anywhere, but prednisone, when I was on it, caused me awful insomnia (though not with any tiredness - I had more energy than at any other time since being sick when I was on pred). After some unsuccessful attempts at trying out sleep meds, my doctor prescribed me Amitriptyline which gave me the best nights' sleeps I ever had, even while still taking the prednisone, and it got rid of the restlessness pred caused me too. Amitriptyline helps me so much with sleeping through most pain and discomfort and I continue taking it now I'm no longer on pred - and it's still helping me sleep, I've not become tolerant to it.

There are many options for meds for sleep, if you talk to your doctor you may find something that helps you, and it may be that it is easier to find a solution this way than to try to find ways of controlling the pain itself.

You really should stop driving if you can't trust yourself - even if you're not actually falling asleep, if you're tired your reactions will be off and your timing slower.
01-26-2014, 10:35 AM   #37
Spooky1
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I also have these issues. I am trying Melatonin as a sleep aid. I also read somewhere many years ago that it does help something to do with Crohns. I must reinvestigate that. But I'm sleeping more fitfully when I do sleep.

I too live in rural areas and find a long drive incredibly tiresome and muscle fatigue and joint issues also mean I take my time on any journey and take breaks whenever I need to. I am wondering if moving nearer would compensate for less use of petrol.
01-26-2014, 11:43 AM   #38
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I think my concern about taking any medications to aid in my sleep is I don't want to miss getting up when I really need to (bathroom). Before I got my ostomy, I never slept well either, but that was because I was going to the bathroom 30+ times a day. I did not want to force myself to sleep as I know the results would have been messy.

I take hydromorphone for the chronic pain, which I have long grown use to, in that there in no fuzzy head effect. I can't take any more than I take now, as my digestive system slows down/stops if I do , which just leads to pain.

I have to explore my options with respect to employment insurance, as its hard to just not work and not have any income coming in. Despite being at the same job for 16 years, it might be time to change. The hour+ commute just isn't working for me anymore. I can't move closer, as I a partner and her two kids to consider and its not fair to uproot them from all their friends and family. She does work, so fortunately she had an income, but we also carry two mortgages so mine is needed as well.
01-26-2014, 10:28 PM   #39
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I hate to read all these stories of people being so tired - fatigued!! I have felt like such a slacker - lazy bum for so long thinking it's just in my head. Sorry we have this to deal with on top of Crohn's!! I wish there was a better word to explain the fatigue..... horrible mental & physical exhaustion.... but sometimes you're so tired you can't even sleep. I feel your group's pain!! makes me feel LESS CRAZY! The Crohn's "related" issues are as bad as the disease itself!!
01-26-2014, 10:57 PM   #40
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Do many people also suffer from depression, as lets face it, life could be better. I do, thus my reason for asking. I never felt my depression caused fatigue, but it may contribute to my body aches. It seems ok, but I guess asking a crazy person if they are crazy, doesn't always get the true answer I take Cymbalta to help me witn this.
01-27-2014, 02:00 AM   #41
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Do many people also suffer from depression, as lets face it, life could be better. I do, thus my reason for asking. I never felt my depression caused fatigue, but it may contribute to my body aches. It seems ok, but I guess asking a crazy person if they are crazy, doesn't always get the true answer I take Cymbalta to help me witn this.
Depression and anxiety can make crohn's worse. Even the most skeptic doctors will tell you to manage your emotions.. and change your lifestyle as best you can, to cope with it... and will even suggest anti-depressants and anti-anxiety medication for short term relief.

And yes... stress and depression can cause fatigue... even if you don't have Crohn's.

My sleep therapist even said they can cause sleep dissorders.

But, on the other hand.... even when I am as happy and relaxed as can be (which is rare)... my fatigue still doesnt go away... But I have DEFINITELY noticed a pattern between crohns flareups and stress.
01-27-2014, 04:17 AM   #42
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I can't even survive my day without a nap anymore! It is so hard to balance
Crohn's and life. I have had Crohn's all my adult life and it affects everything. In order to go to school I have to work, but it's not easy with Crohn's. Setting new limits for myself has been especially challenging because I don't want to give anything up, but also don't want to feel icky all the time.
01-27-2014, 05:02 AM   #43
Jimena
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This 40 hour a week job is just not for people who have crohns. It crazy that all your energy goes to your work and then you just sleep when you get home and try to eat something and be like zombie rest of the evening. I go to bed 9pm every night and sleep like a baby to 8 am. And i am still soo exhausted.
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Severe Crohn's since 2002. Tried every longterm medicine there is, Pentasa, Azamun, Remicade, Humira...
Temporary colostomy 2013 -> Parastomal hernia
Surgery, mesh, end colostomy 2014 -> deep wounds that didn't heal, three fistulas around stoma
Colon removal and ileostomy 2015 -> So far so good

And after every stoma surgery, nasty Pyoderma Gangrenosum around my stoma.
01-27-2014, 11:45 AM   #44
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I hate to read all these stories of people being so tired - fatigued!! I have felt like such a slacker - lazy bum for so long thinking it's just in my head. Sorry we have this to deal with on top of Crohn's!! I wish there was a better word to explain the fatigue..... horrible mental & physical exhaustion.... but sometimes you're so tired you can't even sleep. I feel your group's pain!! makes me feel LESS CRAZY! The Crohn's "related" issues are as bad as the disease itself!!
I tried to explain that to my doc... and he didn't seem to understand. If I had the choice between the stomach pain and the fatigue... I'd pick the pain in a second. I can manage pain and frequent bathroom visits... but fatigue is a complete and total life-changer.... and what's worse... its not easy to explain to a healthy person.

40 hour/week jobs... I guess that depends on the severity of the fatigue and the type of job.

I used to teach... I can't anymore, since I can't stand for any amount of time. Most of my work I do is done at home lying on the couch... and only during strategic periods of time when I am not vegetating.
01-28-2014, 05:02 PM   #45
Spooky1
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I totally identify with all of you. This is the only place I actually get some genuine understanding. I've got the flu on top of everything too. That's what I get for a visit to the GP surgery! Soooo exhausted.
02-09-2014, 10:08 PM   #46
nogutsnoglory
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Just getting around to joining this group. I suffer from extreme fatigue and dizziness and it's very disabling. I mostly can't go out and when I do it's scary and I often cancel plans. It's very depressing but when you feel like collapsing, going out is not a good idea. It doesn't matter what I eat, how much I sleep, I never feel refreshed. A good day is one where I'm exhausted but have a tiny bit of energy to go out.
02-10-2014, 12:51 AM   #47
tots
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I have been out of remission for about three years. I have had varying degrees of symptoms in that time. Fatigue has been a constant though. I work retail- its hard physical work. My husband is not so patient, his answer is don't work so hard at work so I can get all "my" stuff done at home! Easy for him to say! I just do the best I can.

I have had my Vit D and B checked- I take 50,000 of Vit D a day to get my number from 18 to 89. MY B is normal at 450, Thyroid normal. I still feel like I am dragging my way through the day.
I would dearly love to give up CD so I could feel "normal"!

Any suggestions? Anything I may be over looking?



Lauren
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Diagnosed= 1992 and again Feb 2012 Confirmed with
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Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


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Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
02-10-2014, 02:47 PM   #48
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Oh wow I'm so glad I read this, I have posted in another thread.

My panic has been difficulty reading at times the words will just not go in, the fatigue too its extraordinary and I can just drop asleep at the drop of a hat. Today I nearly fell asleep in a meeting and was yawning my head off. I'm so exhausted. I have difficulty concentrating then suddenly I sort of pick up, my head clears and then it clouds over.

My lower abdomen has been upset a bit, especially passing mucus as I have a stoma. I was told that my body does not absorb nutrients as well and I could feel tired. Now there is tired and there is tired, and when I feel exhausted I become upset and can't believe how tired I do feel. I still don't understand a flare up at all. My hubby has noticed I've become very forgetful and it feels like my head is full of nothing like cotton wool. Then there are days I'm back to normal and switched on. It's all quite weird.
02-10-2014, 02:58 PM   #49
Spooky1
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Fatigue is a constant with me. Maybe there needs to be some proper focused research into dealing with this and then maybe the crohn's itself would not be so bad or exhausting to deal with.

I am exactly the same as nogutsnoglory. What a horrible life it is. I always end up so disappointed with my day because doing something takes so much physical effort and muscle pain, and yes the nausea means we can't even get one chore done without having a sit down break. The worst of course is that people just don't understand what we are actually experiencing and having to go through and live with.

One day we will all be better and then maybe we can laugh at the bad old days.

Keep cheerful, keep reading the joke thread and the officially funny pictures thread. If you can't be healthy have a good sense of humour available to you and others.
02-12-2014, 12:22 PM   #50
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Hi, I have only been diagnosed with Crohn's for 3 weeks now but the tiredness is definitely getting to me.

I have to commute by train and bus in the morning in order to get to college but by the time I get there I feel like I could collapse, curl up in a ball and sleep until home time! Let alone try and concentrate on my work!

I am yet to really get my head around crohns and find a routine but I want to look into doing some yoga to try and get me going in the mornings.

Does anyone have opinions on whether a change in diet would make a difference to how tired we get?

Even through all the pains I have been getting, I feel really pathetic being so tired all the time! Im only 19 years old and I can literally fall asleep anywhere and trying to find the motivation to do anything at the moment is becoming harder and harder!

Reading this support group is giving some encouragement though that im not going through this totally alone
02-12-2014, 12:43 PM   #51
wildbill_52280
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tiredness is from a few possible causes-

iron intake- not all supp are same quality try a few.
b12 status- if you take a supplement take 2 forms metyhylcobalamin and adenosylcobalamin
oxidative stress- try green tea, coffee, vitamin e supplements, chocolate, high antioxidant fruits. i wont explain how here, but yogurt that is fermented for 24 hours get also help restore energy, and soluble fiber in take to produce short chain fattys acids as crohn's patient are low due to abnormal fermentation but our intestinal bacteria.
02-13-2014, 06:58 AM   #52
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Hi, I have only been diagnosed with Crohn's for 3 weeks now but the tiredness is definitely getting to me.

I have to commute by train and bus in the morning in order to get to college but by the time I get there I feel like I could collapse, curl up in a ball and sleep until home time! Let alone try and concentrate on my work!

I am yet to really get my head around crohns and find a routine but I want to look into doing some yoga to try and get me going in the mornings.

Does anyone have opinions on whether a change in diet would make a difference to how tired we get?

Even through all the pains I have been getting, I feel really pathetic being so tired all the time! Im only 19 years old and I can literally fall asleep anywhere and trying to find the motivation to do anything at the moment is becoming harder and harder!

Reading this support group is giving some encouragement though that im not going through this totally alone
I don't find that what I eat makes a difference. However, if you are not eating enough and are underweight or losing weight, that could certainly make you more tired. Many people with Crohn's can end up with low iron levels, which is a cause of tiredness. Low iron can't always be helped with diet if your absorbtion isn't good - if your blood tests do indicate low iron you might benefit from a supplement.
02-14-2014, 01:23 AM   #53
Zeppy321
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I am so tired all the time. Don't know if it's the disease or the meds. I have 3 teenagers and a great husband so things are pretty much taken care of around my home but I don't want to live in bed and miss out on things at my kids schools.

I take : Imuran 50 mg daily and Entocort 3 mg x 3 daily
02-14-2014, 11:00 AM   #54
jdpar
I have 4 daughters (ages 13, 9, 5 and 5 (twins)) and work full time as a nurse. Because of my recent diagnosis and 2 trips to the hospital on top of being sick and seeing my GI, I've missed a bit of work lately. My boss is threatening to "put me in a different position" instead of my office job that I have. She wants to move me out to work on the floor, which means I'd be on my feet more. (She knows this is difficult for me right now because of all my swelling not only in my abd. but my lower extremities too due to my 40mg of Prednisone daily.) I think she's doing this because she's angry and she thinks this will make me quit. Even though I'm not able to go to work as much as I want/need to, I still get more work done than the 2 other people that have the same "job description" as me. I'm so frustrated with not feeling well and then having to put up with this all the time too. I'm wondering about doing something that I can work at home instead, or maybe even trying to get on disability (althought I REALLY don't want to do that!).
Does anyone else have problems with keeping up when it comes to work? I would love to hear what other people have done in similar situations.
02-14-2014, 11:08 AM   #55
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Zeppy and Jd,
I know how you feel. In a way it's easier for me as I never had children. I just wouldn't with this health. Work is nigh impossible as I am so depleted of energy and I'm on a liquid feed through a pump for 20 hours a day. Living anything of a normal life seems way out of my league and leaves me quite disappointed in life in general. Sometimes I wish I just had people at home to chat to, on the other hand though, as you both probably know, it's hard work just keeping up focus and concentration on anything, even a loved one.
Jd, I'm on disability. I hate to say it but employers don't want those with lifelong illnesses. Sounds to me though, you are doing a good job.
02-14-2014, 11:37 AM   #56
jdpar
Thank you Spooky. I try to keep up. Luckily I'm fairly fast and accurate at what I do, so when I am at work I do a good job. I'm supposed to be full time (40 hours/week), but I haven't been able to work a 40 hour week since at least November 2013. My boyfriend lives with my children and me, but he also works and his is a physical job so he is tired at the end of the day too. The only reason I am against disability right now is because 1) I don't think we could financially survive on it and 2) I also suffer from bipolar disorder and my psychiatrist thinks that it's good for me to be at work because that's how I get out of the house and in a social situation. Unfortunately though my Crohn's diagnosis has seemed to taken a big toll on my bipolar diagnosis and I am having more and more "bad" days mentally.
But there I go rambling... Thanks for the welcome and the encouragement!
02-14-2014, 11:52 AM   #57
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The fatigue I get from my Crohn's is so crippling. I cannot do much, and when I do finally muster up strength to accomplish something, I have to rest for days after. It is so annoying, especially because people just assume that I am lazy. I am not lazy, I'm just so exhausted!
This doesn't help, but I know EXACTLY how you feel. Other people really don't get it!

jill
02-14-2014, 02:47 PM   #58
Spooky1
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JD, I am quite shocked that you are trying to hold it together. It's really sad you have to work a 40 hour week. I'm not awake much more than that, let alone care for kids, be a mum to them and your boyfriend. In a way I think they might be the biggest stabilising factor in your life. But, my, that's really pushing it with what you have wrong. I am so sorry for you. I sincerely hope both illnesses heal soon.
02-14-2014, 04:49 PM   #59
jdpar
Spooky - "Holding it together" seems to be what I am struggling to do most days. Not only do I feel tired a lot but I also haven't really gone into remission since being diagnosed and put in the hospital the first time in December, so I feel very unaccomplished by the end of the day/week/whatever... I know I get very "short" with my kids and my boyfriend and other family members because of my fatigue and pain too. Then I feel really bad because I know it's not their fault I feel so bad either. It's so hard! I'm sorry to be venting so much. I litterally just found this site today and I'm just so excited to find other people who "get me"!
02-14-2014, 09:51 PM   #60
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Hang in there jd. Fellow Crohns friends realize the frustration from those whom think we are imagining our fatigue and pain. But eventually those around you will provide support. My fatigue improved once my iron levels improved and B12 numbers rose through supplements and injections. Keep in touch. Take care.
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