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02-15-2014, 05:36 AM   #61
Spooky1
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Actually, iron is one supplement I don't take. I know the tablet form feels like it's burning a hole in my stomach but I think these days its possible to get it in liquid form. I will give that one a go.
02-15-2014, 10:00 AM   #62
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Actually, iron is one supplement I don't take. I know the tablet form feels like it's burning a hole in my stomach but I think these days its possible to get it in liquid form. I will give that one a go.
I had similar problems, even vitamin pills without iron upset my stomach. I believe you can get iron injections as an alternative.
02-15-2014, 12:18 PM   #63
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Hi spooky, like many folks, irons pills were very disruptive. Can not take them. So I took Iron Chewables. They were much better. But still not enough absorption . So currently I am in the middle of 10 iron infusions. It's a pain, but this the only way to get iron up,,,and provide me with energy. Hope this helps
02-15-2014, 05:55 PM   #64
Spooky1
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I think I might look into the injections. Thanks all.
02-15-2014, 06:27 PM   #65
durwardian
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I have had some luck with supplements like Propolis, bee pollen. And keeping up the energy vitamins, like C, D. B series. Also, bone broth helps. I do think it is a matter of the damaged intestinal walls not absorbing anything, so the more you can get into the blood the better. Liquid vitamins are not as important as the absorption catalysts, like fatty compounds. Some are water and some are fat or oil items. I can tell I am getting nowhere when I'm still tired and my urine is dark and smells like the vitamins I'm trying to absorb. Shots really help, get the B-vitamin shots, they do wonders. It actually helps to do anything you can to repair the walls of the intestines, and be aware that you probably don't produce the right enzymes any longer. Also try taking Mucinex, or guafinesin, about 800 mg per day. It is hard on the tummy, so take it with a meal. My neurologist is not sure why it works, but it does. Try taking enzymes to help break down the foods, and don't hesitate to try baby food or liquid nutrition supplements.
02-15-2014, 06:34 PM   #66
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Interesting. Bee Pollen. Anyone played around with Bee Pollen?? I've always thought of trying it but always hesitated. Any thoughts friends??? As always, this site allows me to give input and receive it. You friends give me MORE than My GI Dr. Bee pollen anyone??
02-15-2014, 06:56 PM   #67
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Interesting. Bee Pollen. Anyone played around with Bee Pollen?? I've always thought of trying it but always hesitated. Any thoughts friends??? As always, this site allows me to give input and receive it. You friends give me MORE than My GI Dr. Bee pollen anyone??
http://www.webmd.com/balance/bee-pol...d-side-effects
02-16-2014, 04:39 PM   #68
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Always tired. I was once active and always out n'n about, and now I'm having a hard time just getting from the couch to my bed…

I went grocery shopping today and had to have a cart (though only need a few things) just to support me from not falling over.

I'm a 22 year old female! Being inactive is making me miserable but I just don't have the energy

(Aslo my resting heart rate is sitting around 116…ugh)
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Crohn's Disease: December 23, 2013 (pre-exisiting symptoms four years prior)

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02-16-2014, 05:08 PM   #69
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I've just started using liquid iron supplement which us apple flavoured see how that goes
02-16-2014, 11:30 PM   #70
nogutsnoglory
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I have been trying D-Ribose to try to gain energy. It has shown promise in small studies. Day 3 and no change yet. I'm not too optimistic after trying everything but what the hell.
02-17-2014, 12:52 PM   #71
Spooky1
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Fayee,
I use a cart/trolley as its my glorified zimmer frame. I just can't manage the supermarket without one.
02-17-2014, 12:56 PM   #72
durwardian
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I love holding the cart, less pain shopping. I try to pull off that "I'm just real casual" lean using both arms.
02-17-2014, 01:03 PM   #73
Spooky1
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Ha, that's exactly what I do.
02-21-2014, 11:35 AM   #74
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I am feeling drained today! I've been working all week and filling in for someone else while also trying to do my job. My house is a horrible mess! It looks like a tornado has gone through it. I don't think I've done any laundry since last weekend. And I haven't been to the grocery store at all this week. I feel horrible that I'm not being a very good mother/girlfriend by neglecting things at home. But it seems like if I want to have the energy to work, I don't have anything left when I come home. Oh, and I work tomorrow (which means 6 day work week with 1 day off before I go back). Ugh... Thanks for letting me vent!
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02-21-2014, 12:40 PM   #75
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Well, you impress the heck out of me!

The flylady.com website does a good job with the "exhaustion + housework" combination, breaking things down into targeted spurts of 15 minutes. And reminding you to take care of yourself first. The time when you've got absolutely no time to rest is the time that you most need to.

Hang in there.
02-21-2014, 05:55 PM   #76
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the fatigue is ridiculous! it's worse when as a manager at my job I have to cover a callout and work an 18 hour shift...when a 9 is tough enough sometimes...and they wonder why I get the way I do sometimes.
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Diagnosed with Crohns Disease in January 2012.

Colon Perforated March 2013, total of 3 feet of intestine removed and temp ileostomy placed.
ileostomy take down March 2014
Hernia repair June 2015 in surgical area from 2 prior surgeries
Perianal abscess found Feb 2017 with subsequent fistula discovery & seton placement March 2017 w/2 additional seton drains placed May 2017
Have surgery pending to remove gallbladder & repair hernia along a prior surgical site.
02-24-2014, 02:39 AM   #77
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hi,
i can't seem to stay awake! my sleeping patterns all over the place. i usually sleep at around 6am waking up at around 1 in the afternoon and when i try to do an all nighter to sort it out i can barely make it past 9am and then make it even worse! the fatigue is making it harder to concentrate and is therefore having a huge impact on my work which in turn is increasing stress.
any advice?!
02-24-2014, 06:35 AM   #78
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hi,
i can't seem to stay awake! my sleeping patterns all over the place. i usually sleep at around 6am waking up at around 1 in the afternoon and when i try to do an all nighter to sort it out i can barely make it past 9am and then make it even worse! the fatigue is making it harder to concentrate and is therefore having a huge impact on my work which in turn is increasing stress.
any advice?!
A good sleep routine is so important! There have been a couple of times in my life where my sleep has been so messed up, and it makes such a difference to how I feel mentally and physically. I sleep so well now and I'm careful to make sure it stays that way!

Staying up all night like you've tried is one option, if you can do it. Have you tried staying awake through the night (as you currently are) then making sure you're outside somewhere throughout the day to ensure as little sleep as possible until you make it through to the evening? It will be an awful day (and definitely not a day for doing anything requiring attention - no driving!) but if you can hold out you should sleep through the night.

What helped me so much with sleep has been taking Amitriptyline. I had been sleeping well, but then I had to take prednisone, which caused severe insomnia - it was awful. My doctor prescribed Amitriptyline which cured it immediately. And I don't seem to have built up any tolerance to it - it still knocks me out, well over a year later. I guess you could try taking a strong sleep med in the evening, something that will make you sleep even if you haven't been awake for a full day.

So perhaps you could try something like the following: fall asleep around 6am as you're currently doing. Try and get up earlier than 1pm if you can, so you haven't had much sleep. Then the following evening, rather than staying awake until 6am, take a strong sleep med in the evening at a reasonable bed-time. Amitriptyline in a high enough dose should cause you to sleep when you wouldn't naturally be tired. There may well be other sleep meds - different ones work for different people - I'm using Amitriptyline as an example because that's what causes sleep to come for me. It helps me sleep through pain and discomfort, and if it works for you it should help you sleep even when you otherwise would not be tired.

Once you are in a good routine, don't break it! Make sure you don't give in to temptations to lie in in the morning. Make yourself get up early to stand the best chance of getting to sleep at a good time in the evening.
03-10-2014, 06:55 AM   #79
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I was doing so well this morning! Travelled in to London by train and bus for college and have managed to get on with my work really well and get a decent amount done for a change. But then BAM! I suddenly feel like Im gonna fall asleep on the table! I have got too much to be doing to stop but my concentration is disappearing!

I have stopped for a break, eaten and had a drink but somehow I don't think I'm going to get much more done today! agh its so annoying!
03-10-2014, 07:22 AM   #80
nogutsnoglory
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Natasha I have episodes like that too. What is that? I feel better and embark on a task and out if nowhere I feel like my legs are going to cave on me, I get weak and my body aches and I want to just lie down.
03-10-2014, 07:25 AM   #81
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I know its so annoying! Im stopping for lunch soon so I'm hoping I will have more energy after but I doubt it! Its stressing me out thinking that I have still got a few more hours here and then got an hours journey home! Im so gonna fall asleep on the train!
03-10-2014, 08:42 AM   #82
JoFowler
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I take Remicade and anywhere from 1-4 weeks before my treatments I suffer from fatigue. Two days after my infusion, I get out of bed and immediately notice that the "fog" is gone. It feels like a miracle every eight weeks.
03-10-2014, 08:44 AM   #83
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What is Remicade? Is it something that you go on after steroids? x
03-10-2014, 08:51 AM   #84
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Yes, if you click on it in my post, there is a proper explanation, but basically a medication that gets administered through an IV, for me every 8 weeks. It is used for moderate to severe Crohns - I have it in small bowel and had a perianal fistula and abscess when I was diagnosed in Sept 2012.
03-10-2014, 03:11 PM   #85
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I have recently started magnesium, vitamin B, and iron supplements as my levels were low. I am surprised that I can tolerate iron supplements as I am very sensitive to those type of things. The one I take is Mason Natural Sugar Free Ferrous Sulfate.
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03-10-2014, 04:00 PM   #86
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I need to join this support group. I can hardly stay awake--I actually need ADHD medicine to keep me from falling to sleep, which does not always work.
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03-11-2014, 06:26 AM   #87
Spooky1
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yes, i just got soluble iron and will start taking it today. Must say, it's a bit expensive but i want to give it a try as i cannot cope with the extreme fatigue. Life is a disappointment when you haven't got the energy to complete any one task, let alone live normally.
03-11-2014, 11:59 AM   #88
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I need to join this support group. I can hardly stay awake--I actually need ADHD medicine to keep me from falling to sleep, which does not always work.
This is interesting, I am on ADHD meds for the same reason. I can't stay awake, even to drive sometimes. I'm glad I'm not the only one~
jill
03-11-2014, 01:10 PM   #89
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I have had a mild case of Crohn's since 1998. In 2009, I developed a tingling in my feet and fatigue with no other symptoms and no flare ups. I spent the next 3 years trying to determine the cause. No doctor said it could be Crohn's. Last year, I felt much, much better. I didn't know how much better until the beginning of this year when the tingling and fatigue set in again. The fatigue is more of a light-headed feeling, a little dizziness, and a foggy head. If I get 8 hours sleep, I am not sleepy during the day and I can stay up until 1 or 2 in the morning. I am not on any medication for the Crohn's as I find it does not prevent the one or two flare ups that I may have a year. If I feel a pain, I can take a couple of prednisone to stop it. Has any one else with mild Crohn's experienced this and what supplements or treatment have helped?
03-12-2014, 10:40 PM   #90
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My sleeping patterns are no patterns at all. Most nights, I fall asleep around 9:30, wake up about midnight, fall back to sleep at 4:30 a.m. or 5 a.m., before waking for work. Sometimes I am so tired I stay in and sleep all day. I've tried meds for depression and insomnia, get B 12 injections and take a prescribed Vitamin D, but I just stay tired. I hate it. I've had Crohn's since 2004.
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