06-01-2010, 06:04 PM   #1
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EmAitch88's Avatar
Join Date: Jun 2010
Location: Washington

hello, i just joined this forum today. i was diagnosed at the end of April with Crohn's Ileitis. i have my follow up appointment tomorrow and i have so many questions!

one thing that i am desperate to figure out is my fatigue. i will have a full night's rest and i own't be sleepy..but my body will be sooo tired. i have to stand at work, and i find myself leaning on the counter all the time. sitting down is such a TREAT!! haha.

like i said, i haven't had my follow up appointment yet (had blood drawn, etc.) so i'll know more after tomorrow..but i'm assuming my body is so tired because i'm anemic from the Crohn's.

what do y'all do when your body is so tired?? do you have vitamins and supplements that help?

06-01-2010, 06:06 PM   #2
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Join Date: Jan 2010
Location: Barrie, Ontario

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Could be that your B12 is low too. Make sure you get that checked out.

Good luck...and welcome

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

06-01-2010, 06:08 PM   #3
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Crohns08's Avatar
Join Date: Sep 2008
Location: Florida
I take an iron supplement and I get monthly B12 injections. Of course you may want to do weekly if yours are low, mine are at a good level now. Something you also might consider is sitting outside in the sun for ten minutes, I find it helps me feel rejuvenated and as an added bonus your body will produce vitamin D!
Toni, Diagnosed in September '08
Specific Carbohydrate diet
Currently on:
Vitamin D
SCD Multivitamin
09/2011 - Draining an Abcess the size of a lemon!
10/2011 - Same abcess, different approach this time, open incision!

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06-01-2010, 06:17 PM   #4
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EmAitch88's Avatar
Join Date: Jun 2010
Location: Washington
Nyx, i'm hoping to find out about that at my appointment tomorrow, considering they drew blood and what not. thanks!

Crohns08, i heard that too much iron is to be avoided?? i dunno, though..the last time i had my vitamin D checked, it was at 16%!!! supposed to be at least 50%, i believe..my mom had breast cancer, so i immediately started taking Vitamin D. could still be low, i guess? thank you!

another thing: i've been getting headaches a lot and i'm getting a cold. i read that ibuprofen and other "regular" pain relievers shouldn't be taken. what can i do to relieve the pain/cold symptoms?
06-01-2010, 06:28 PM   #5
New Member
Join Date: Apr 2010
chk with ur doc about vitamin D supplement dosage. I was put on vitamin D by my primary and the dosage is considerably higher the the otc stuff. (I also only had to take it 1x a week for 4 weeks). Good luck with everything! Hope you get some energy back and some answers with your blood work
06-01-2010, 06:37 PM   #6
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Join Date: Feb 2010

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you really cna't go wrong with vitamin D. Crohnies benefit from as much as they can get as well as calcium!

Yeah, it's not good to take too much iron, so I'd wait to hear from your doc if you are anemic or not. Depending on if you are anemic and how anemic you could be prescribed high dose iron supplements or recommended to get a multivitamin with some extra iron. the reason too much iron isn't good is because it can constipate you. So, best to hear from your doc what your levels are and they'll make some recommendations from there.

Also with B vitamins, specifically B12. If your disease is in your ileum you may not be absorbing your B12 properly and unfortuantely no matter if you take an oral tablet of B12 it won't be absorbed because of the inflammation. If you are B12 deficient, the only way to boost your levels would be by injection

Hope that helps Oh...and if you are going to get any type of supplements, gel caps or liquid forms are the best because they are the easiest to break down by the digestive system, thus ensuring you absorb more and getting the most out of your vitamins and supplements.
February 2010 - diagnosed with Crohn's disease.
January 2011 - Inflammation downgraded from moderate-severe to mild with no symptoms!
January 2014 - adopted a mostly Paleo diet
May 2015 - still in remission!

Currently Taking
Humira - 40mg/week
Imuran - 125 mg/day
Calcium magnesium citrate
Fermented cod liver oil/butter blend
Culturelle probiotics
Vitamin D
Vitamin C
06-02-2010, 01:55 AM   #7
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Join Date: Apr 2010
Location: Nottingham, UK
Or colds and mild pain relief you should stick to paracetamol (acetominophen? Or tylenol in the states).

Also unfortunately in some cases being tired is just part of the condition. Someone here (sorry can't remember who!) said that when your body is fighting inflammation it doesn't have a lot of energy left for other things. I schedule in time for a rest or nap after I get home from work. Some days I might only need to watch tv for half an hour and I'm good to go again, other days I might sleep for an hour before I'm recovered. I also make sure I get a proper lunch break at work- before I was ill I would grab a cracker or two and head back to work. Now I have a sit down meal and drink, and spend at least half an hour chilling in the staff room before going back to work.
Crohn's in the terminal ileum, dxed Jun '10

125mg azathioprine
4g Pentasa
06-02-2010, 07:46 AM   #8
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Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

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Hi Em
and welcome

Yes Rebecca is right, fighting inflammation when you're flaring does take it out of you, rest is crucial for healing, try napping, just to recharge your batteries.
Fatigue is all part n parcel of being a Crohnie I'm afraid! In time you will recognise the signs, your body will tell you!
Stay away from the NSAIDS!!! (Ibuprofen etc) try paracetamol
good luck, lots of support here for you
lotsa luv
Joan xxx


Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery


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06-04-2010, 07:42 AM   #9
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Marie's Avatar
Join Date: Jun 2010
Location: Gold Coast, Queensland, Australia
Yep, I'm tired. Sometimes I sleep 21 out of 24 hours. A good day is probably 12-15 hours. Crashed out of a job 10 hours per week working from home mid last year and have only slowly been recovering over almost a year (it was an emotional/mental breakdown too). Thing is I'm supposed to be in remission and my blood tests don't show any other serious problem (aside from low B12 which I've been getting injections for). I was diagnosed in 1980. I'm wondering if just having the disease for 30 years can create chronic fatigue like this? I've always needed naps in the past and been much lower in energy compared to healthy types but since I turned 40 (now almost 48) this fatigue has just been creeping slowly more and more over me. I hope there's a turnaround somewhere...

Last edited by Marie; 06-04-2010 at 07:45 AM.
06-04-2010, 03:19 PM   #10
Regular Joe
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Join Date: Sep 2009
Location: Cleveland, Ohio
Hi Em,

Welcome. I'm a 51-year-old guy, with a long-term flare lasting about a year. That may have been the onset of Crohn's or it may have onset 7 years ago with a partial obstruction.

Crohn's disease is an autoimmune disorder, which means it involves multiple organs and body systems, and effects different regions and areas of the body. My ortho surgeon calls it a "systemic" problem which is very accurate. The two most obvious being the immune system and digestive system. Also depending on it's preference, Crohn's can manifest in one of 5 digestive areas: Gastroduadenal CD (upper GI), Jejunoitis (between duodenum and ilium), Ileitis (iliem - more common), Ileocolitis (ileum & lower bowel - also more common), and Crohn's Colitis (or "Granulatomous Colitis" involving lower bowel). Just because Crohn's disease manifests in one area doesn't mean it won't progress to another area.

Crohn's disease causes one (or more) of three major problems to our gut. 1. Fibrostenotic which means it causes "strictures", narrowing, or obsstruction in the intestinal wall. 2. Perforation which means it causes holes that allow leakage of the bowel that result in absesses, fistulas, or other abnormal connections from the bowel to the bowel or other organs, and 3. Inflammation which means localized swelling, ulceration, lesions, sores, and the like. All nasty stuff.

Because it is an autoimmune disorder, Crohn's disease can and often does have "Extra-intestinal Manifestations (EIM's)" that effect joints, skin, eyes, liver (fatty infusion), kidneys (stones), and "psycho-social" (anxiety and depression)

Fatigue is part of this disease because of the inflammation process which is somehow initiated by the immune system, and the immune response. The immune system is doing double-duty which the body is not designed to do. So it takes more energy to operate the immune system which means the body has to figure where to get the energy from. Obviously it's not there so we get fatigued.

With my case, I get fatigued when I'm having a flare or "active inflammation" going on. I'm being treated with EntocortEC for about 3 weeks now, and I believe it is working. My symptoms have become mild, and the inflammation has gotten less active because I haven't had fatigue a symptom during the past 3 weeks. So if you are feeling fatigued, you are probably having an active inflammation, an absess or fistula, or a blockage or stricture. I'm pretty sure any of those conditions will bring about an autoimmune response and fatigue - PLUS a lot of pain! Usuallly when the Crohn's flares are under control or in remission, the fatigue subsides.

But until any of us gets effective treatment, we all have to live with fatigue as good as we can. For me it was missing days of work without pay, lots of naps and rest, and general "unproductiveness" for the past year. It's not a pleasant disease nor is it easy to get under control.

I'm not an expert, but I read a lot and absorb as much information that I can. My girlfriend has Crohn's Colitis, and I have Crohn's Ileitis. The more we know and understand about this disease, it becomes easier to manage and live with the symptoms. Glad you could join, and hang in!


Last edited by Regular Joe; 06-04-2010 at 03:28 PM.

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