Crohn's really knocks you out doesn't it??

HorseLover!! · Nov 29, 2013

Damn I've been tired, so tired I walked into a lamppost while walking my dog, fell over in the middle of the road whilst I was in town well that was embarrassing :ybatty:. I was asked "why do I walk hunched over??" I answered "I happened to be in pain pretty much all the time" The person asked "why??" so I then said "I have Crohn's Disease, so I can't stand up straight when I'm in pain"

.

I had my blood tested and that came back and I'm anaemic great!! Food hates me at the moment, I'm absolutely exhausted even if I haven't done anything. the pain I keep getting is horrible, still getting blood and mucus in my stool.

I hope it gets better before I go back to work!! I hate working whilst I'm flaring and because I work with horses it makes it so much harder!!

but as usual I just keep pushing myself through it because I love my job and I love horses!!

I'm just asking why does CD make people so tired??

cca2013 · Nov 29, 2013

Aw, I hope you feel better! Believe me, we've all been there and I'm JUST (literally since weds) getting my energy back.

I started taking Vitamin D3 and Calcium back when I was advised on this forum. Do you take those? It really does help and from what I understand we are very deficient in those areas. Vitamin D3 also helps with inflammation as well. I'm also going to start taking Vitamin B12 as well...since I want even more energy when I start work in 2 weeks.
Also, taking iron might help as well. You may be weak because you are still loosing blood.

I hope you Feel better! It sucks, I know! *hugs*

HorseLover!! · Nov 29, 2013

cca2013 said:
Aw, I hope you feel better! Believe me, we've all been there and I'm JUST (literally since weds) getting my energy back.

I started taking Vitamin D3 and Calcium back when I was advised on this forum. Do you take those? It really does help and from what I understand we are very deficient in those areas. Vitamin D3 also helps with inflammation as well. I'm also going to start taking Vitamin B12 as well...since I want even more energy when I start work in 2 weeks.
Also, taking iron might help as well. You may be weak because you are still loosing blood.

I hope you Feel better! It sucks, I know! *hugs*

Thanks cca2013, I don't take vitamin D3 or calcium so I might start taking those. When I last tried taking iron I ended up with side effects

so I stopped taking it. I'm going back to work in January so I've got a bit of time to hopefully get better

Scaryman · Nov 29, 2013

Question: if your still having flares, have you thought about talking with your doctor about medication change? I know I've been through all the drugs up to humira. Just wondering why not try looking into it. Hope you feel better with supplements.

Goddess · Nov 29, 2013

You might ask your doctor to prescribe iron infusions to get you past the anemia. In my case, the fatigue is a major symptom, but the anemia on top of it wasn't doing me any favors.

I asked my pharmacist what types of iron supplements are best absorbed. He said, "none of them. If you can get infusions to start with, then supplements might maintain the level".

Once I got a decent iron level back the physical weakness went away, along with the dizziness. I'm still extremely tired and sleepy, and my concentration's a mess.

The staff at my local supplement store was very helpful when I went to get iron, calcium, vitamin D, B-complex, and probiotics. They explained about the different forms of each and gave me some samples. Sometimes the very thought of taking a handful of vitamins on top of the other pills makes me feel ill. They set me up with fizzy tablets, a liquid iron supplement, liquid-filled calcium gel capsules that don't bother my stomach at all, and gummybear vitamin D! I also got some protein powder with vitamins in it, so I can throw it in the blender with a banana and a tub of yogurt and have something in my stomach even if I'm not hungry.

Haven't had a long enough test to know that it's going to make a huge difference, but getting rid of the anemia and finding supplements you can actually tolerate sounds like Step 1.

HorseLover!! · Nov 29, 2013

Scaryman said:
Question: if your still having flares, have you thought about talking with your doctor about medication change? I know I've been through all the drugs up to humira. Just wondering why not try looking into it. Hope you feel better with supplements.

I have spoken to my doctor about changing meds but he really wasn't any good at all, he just said to me "there really is no point in changing the medication" and when I asked him "why??" he just shrugged his shoulders at me, when I have another appointment with him I think I'm just going to say to him that I want a med change because Aza obviously isn't working for me.

HorseLover!! · Nov 29, 2013

I know the one supplement I won't be taking is iron as the last time I did it made me really dizzy, blurry vision and made me throw up

.

JustAYoungLad · Nov 29, 2013

HorseLover!! said:
I know the one supplement I won't be taking is iron as the last time I did it made me really dizzy, blurry vision and made me throw up .

Yeah, Iron supplements are horrible. The capsules made me throw up quite a few times on them. I was able to tolerate it as a liquid though, so you might want to look into that, although the taste isn't great

uke_r:

ronroush7 · Nov 29, 2013

cca2013 said:
Aw, I hope you feel better! Believe me, we've all been there and I'm JUST (literally since weds) getting my energy back.

I started taking Vitamin D3 and Calcium back when I was advised on this forum. Do you take those? It really does help and from what I understand we are very deficient in those areas. Vitamin D3 also helps with inflammation as well. I'm also going to start taking Vitamin B12 as well...since I want even more energy when I start work in 2 weeks.
Also, taking iron might help as well. You may be weak because you are still loosing blood.

I hope you Feel better! It sucks, I know! *hugs*

Besides my GI, I have a holistic doctor. He just started me on D3 today to protect my gut because I may be going off Remicade and increasing my Imuran intake.

2

ronroush7 · Nov 29, 2013

I hope you feel better soon.

2

cca2013 · Nov 30, 2013

HorseLover!! said:
I have spoken to my doctor about changing meds but he really wasn't any good at all, he just said to me "there really is no point in changing the medication" and when I asked him "why??" he just shrugged his shoulders at me, when I have another appointment with him I think I'm just going to say to him that I want a med change because Aza obviously isn't working for me.

Wow, that's horrible! Is there anyway you can change GI's? Obviously if CD isn't responding to one drug you switch, to get in remission! Doc's like this really piss me off because WE ARE SUFFERING when not in remission! He doesn't have to walk in pain, watch what he eats, or cry on the toilet, WE DO! Ugh!

HorseLover!! · Nov 30, 2013

cca2013 said:
Wow, that's horrible! Is there anyway you can change GI's? Obviously if CD isn't responding to one drug you switch, to get in remission! Doc's like this really piss me off because WE ARE SUFFERING when not in remission! He doesn't have to walk in pain, watch what he eats, or cry on the toilet, WE DO! Ugh!

Yeah he really isn't great, maybe it's because I'm moved from paediatric care to adult because ever since I switched it just hasn't been very good, I really liked my paediatric GI, it was sad when I had to change

. I definitely am going to see what I can do about changing to a different GI!!

HorseLover!! · Nov 30, 2013

JustAYoungLad said:
Yeah, Iron supplements are horrible. The capsules made me throw up quite a few times on them. I was able to tolerate it as a liquid though, so you might want to look into that, although the taste isn't great uke_r:

Thanks I think might try it in liquid form

jonique · Nov 30, 2013

Goddess said:
You might ask your doctor to prescribe iron infusions to get you past the anemia. In my case, the fatigue is a major symptom, but the anemia on top of it wasn't doing me any favors.

I asked my pharmacist what types of iron supplements are best absorbed. He said, "none of them. If you can get infusions to start with, then supplements might maintain the level".

Once I got a decent iron level back the physical weakness went away, along with the dizziness. I'm still extremely tired and sleepy, and my concentration's a mess.

The staff at my local supplement store was very helpful when I went to get iron, calcium, vitamin D, B-complex, and probiotics. They explained about the different forms of each and gave me some samples. Sometimes the very thought of taking a handful of vitamins on top of the other pills makes me feel ill. They set me up with fizzy tablets, a liquid iron supplement, liquid-filled calcium gel capsules that don't bother my stomach at all, and gummybear vitamin D! I also got some protein powder with vitamins in it, so I can throw it in the blender with a banana and a tub of yogurt and have something in my stomach even if I'm not hungry.

Haven't had a long enough test to know that it's going to make a huge difference, but getting rid of the anemia and finding supplements you can actually tolerate sounds like Step 1.

Goddess: did you get the iron infusion from your GI doc or family doctor? What brand of liquid iron are you using? I'm having a hard time finding an iron that doesn't give me diarrhea and stomach ache.

Goddess · Nov 30, 2013

jonique said:
Goddess: did you get the iron infusion from your GI doc or family doctor? What brand of liquid iron are you using? I'm having a hard time finding an iron that doesn't give me diarrhea and stomach ache.

The GI prescribed it. It was given at an "infusion center" that also does home infusions. One of the nurses there also recommended a ferrous gluconate liquid supplement as being more easily absorbed, so I got some at the supplement store.

Here's info on iron injections from anemia.org

http://anemia.org/patients/feature-articles/content.php?contentid=000403&sectionid=00015

scoutfinch · Dec 1, 2013

HorseLover!! said:
I'm just asking why does CD make people so tired??

It's because we're internally bleeding from the inflammation (this also contributes to the anemia). Also, due to the inflammation, our intestines aren't absorbing nutrients the way we should, so we end up malnourished. Lovely, huh?

For iron, definitely look into IV infusions. I've had it a few times and it's not too unpleasant. I also found an oral iron supplement that doesn't make me nauseous - the brand name is Feosol (it's ferrous sulfate).

CAREforCrohns · Dec 2, 2013

I toooootttallyyy understand! I walk hunched over too because Im in pain most of the time, but we get super tired due to the lack of nutrition our body is getting from the malabsorption of food. also the rectal bleeding caused us to become extremely anemic and that too will make you fatigue. trust me, when I am in my flare, I practically narcoleptic, I fall asleep without even warning lol so it is totally normal it comes with Crohn's unfortunately. My doctor put me on hemax, a prescription iron suppliment but I dont really take it I cant even lie, but I started getting iron infusions and after 6 sessions I was no longer anemic, and I had a drastic change in my energy levels immediately after my first infusion, ask your doctor about it.

HorseLover!! · Dec 2, 2013

CAREforCrohns said:
I toooootttallyyy understand! I walk hunched over too because Im in pain most of the time, but we get super tired due to the lack of nutrition our body is getting from the malabsorption of food. also the rectal bleeding caused us to become extremely anemic and that too will make you fatigue. trust me, when I am in my flare, I practically narcoleptic, I fall asleep without even warning lol so it is totally normal it comes with Crohn's unfortunately. My doctor put me on hemax, a prescription iron suppliment but I dont really take it I cant even lie, but I started getting iron infusions and after 6 sessions I was no longer anemic, and I had a drastic change in my energy levels immediately after my first infusion, ask your doctor about it, oh and Check out the website careforcrohnsfoundation.com

Thanks CAREforCrohns, when you mentioned you fall asleep with no warning I definitely know where your coming form there lol I fell with no warning right in middle of a conversation I was having with my boss :facepalm: I really hope it doesn't happen again. My doctor never prescribed my anything for it he just said "take iron supplements" so I did and I can tell you now I'm never taking iron in tablet form ever again :ybatty:. I'm definitely going to ask my doctor about getting iron infusions.

CAREforCrohns · Dec 2, 2013

most iron pills are harsh on your stomach, any good doctor should tell you that smh...if you must take an over the counter supplement try 'sloFe' iron they are easy on the stomach. But you need to go see a hematologist and they will determine your blood levels so you can get the infusion. good luck, and try to stay up lol

ronroush7 · Dec 2, 2013

I take an iron supplement called Ferrofood.

2

ronroush7 · Dec 2, 2013

Also, I see a hematologist. He says that a lot of his Crohn's Disease patients usually need an iron infusion twice a year.

2

HorseLover!! · Dec 2, 2013

ronroush7 said:
Also, I see a hematologist. He says that a lot of his Crohn's Disease patients usually need an iron infusion twice a year.

2

I've never had an iron infusion, I've been told by many doctor that I am low on iron and have been ever since my diagnosis and I'm severely anaemic, but none of which has ever mention me having any iron infusions, I am confused as too why none of my doctors have ever mentioned it :confused2: all they keep saying is "take some iron tablets" or "I'll give you a prescription for some iron". I tell them that every time I take any iron tablet I throw up and get really bad stomach cramps

. of course they don't always listen to me and end up saying to me "are you sure it's not all in your head".

So I think I'm going to ask about seeing a hematologist so hopefully I can get thing sorted