Constantly Tired & Fed up

[libbyhughes]

I was rushed into hospital in October with severe stomach pain.

Im being sent for an MRI as my GI would like to see my small intestines. Hopefully this will come soon, even though im nervous as ever for it!

Im constantly tired and mentioned this to my GI and he didn't seem bothered. He told me he couldn't do anything as my bloods were all fine at my last test.
Im also suffering really bad with painful joints - my hips, ankles and hands are so stuff and sore

Im only 28 but feel like im around 80. I work in retail and my colleagues and managers are amazing and always tell me to 'have a sit down and relax' as much as possible while im working. Its just making me feel so fed up. I hate not being full of energy like I used to be

Anyone feel the same and know something that could help?

(I also think stress brings on my crohns big time, as its getting busier in work I can feel my body and stomach suffering - Im a team leader and would love to be one of the managers but I feel like ill never be able to work full time)

Somebody please reassure me or help in some way!!!!!!!!!

 

[DJW]

Hi libbyhughes,

Sorry you're not feeling well. I know how tough it can be. Fatigue is a constant battle for me.
I hope you start feeling better soon.

Sending you my support. You are certainly not alone.

 

[libbyhughes]

Thanks DJW.

Is this just part of crohns that I need to deal with? Fatigue is awful and so much worse than just tired. Sometimes on the way home from work Ive cried because I am so tired!

 

[DJW]

It sounds like you might be flairing even though your blood work was normal. Hopefully the MRI sheds some light on things.

Are you on any maitinance meds? How long have you been diagnosed?

I'm flairing and have been for awhile; extreme fatigue and joint pain are my biggest issues.

 

[Pilgrim]

When my daughter was flaring and exhausted it took a few months for it to show up in her labs - although the anemia was the first to show.

I feel terrible that you have to feel weak during those strong years of life. I'm sending lots of motherly hugs.

 

[libbyhughes]

I take
Pentasa 1g x 2 a day
Folic Acid 5mg x 1 a day
And then another tablet I cant remember the name of - Begins with 'c' and is for B12?

Ive been officially diagnosed for roughly 3 years. Took awhile for diagnosis as after my first camera they said they couldn't see anything and I was basically 'making it up'.

Then I moved and changed hospitals and had the same test and they diagnosed crohns, ulcers.. allsorts!!


Can I just ask - If my MRI shows that im flaring or that theres some problems with my small intestine, what might happen?
Ive never really had a proper flare before so all this is new to me.

 

[libbyhughes]

When my daughter was flaring and exhausted it took a few months for it to show up in her labs - although the anemia was the first to show.

I feel terrible that you have to feel weak during those strong years of life. I'm sending lots of motherly hugs.

Thank you Pilgrim.

Im wanting to start trying for a family next year and hope to be promoted but right now feel like I wouldn't have the energy for either, yet alone both:thumbdown:

 

[DJW]

By all means ask.

I might mean an adjustment to your meds to get things under control. Did your blood work include iron and B12 levels? Both can cause fatigue.

 

[FrozenGirl]

I would be asking about iron for sure. That was my first sign my iron was going low again was constant fatigue. Now even when my iron is up I still feel a level of fatigue most of the time but not as debilitating.

 

[Pilgrim]

Have you thought about trying Enteral Nutrition while you are waiting for an appointment and testing?

I think if you are flaring, then you may get a med adjustment to help keep the inflammation under control. If you mention to them that you are hoping to start a family soon, they will choose a med that is better suited for that.

If you wait it may get worse. It would be good to take the time to look into what is happening.

 

[libbyhughes]

Yes he always checks my iron, b12 and folic acid.
I used to have B12 injections but they stopped them and put me on the tablets. (One doctor was annoyed because he said they wouldn't suit me and it was just cost cutting) but nothing has changed.

 

[libbyhughes]

Have you thought about trying Enteral Nutrition while you are waiting for an appointment and testing?

I think if you are flaring, then you may get a med adjustment to help keep the inflammation under control. If you mention to them that you are hoping to start a family soon, they will choose a med that is better suited for that.

If you wait it may get worse. It would be good to take the time to look into what is happening.

Ive never tried or even heard of Enteral Nutrition. I was going to mention about starting a family last month but I forgot as soon as I went in!

I have an appointment book in march so will TRY and mention it then!

 

[AnimalLover]

I'm sorry you have extreme fatigue. I have it as well and wouldn't wish it on anyone! I have lost all interest in doing things I use to do. My friends have stopped asking me to do things probably because I have turned them down so many times because I don't want to do anything but sleep. There are days when it's all I can do to keep my eyes open at work and driving home is dangerous sometimes. I would love to feel alive and enjoy the things I once did.
I also have the joint pain. It's not all of the time but when it does surface I feel it in my knees and elbows the most.
It's nice to have yet another person to talk to that knows what I am going through. Welcome!! You're not alone.

 

[Pilgrim]

I'm putting on my mother hat again. Use a phone or a little notebook and keep notes for your next appointment. It really helps. I'm the same way. My mind goes blank as soon as the Dr. steps into the room - well, not blank but when he leads the discussion then things can get lost. I don't know if it's possible for you to take a friend or loved one in with you - sometimes that helps to retain the information when you leave.

Enteral Nutrition. I'm surprised that you haven't heard about it because I heard it was used a lot in the UK (not so much in North America) but maybe that is just in pediatrics.
I don't know what brands there are in the UK, but in Canada there are meal replacements that you can buy in the grocery store or pharmacy called Ensure or Boost (or off-brand also). It has proven results in bringing remission from flares.

My daughter is on her second 6 week cycle of exclusive enteral nutrition (EEN). She has nothing but this formula for her nutrition. This brings 100% of her calories. It's worked really well for her. Unfortunately, when we reintroduce any food she starts into a flare. So we need a med as well for maintenance. Still working on that.

It helps to work with a dietitian to see what your calorie needs are if you go that route. Psychologically, of course, it's tough. If you are interested you could talk to your doctor about it. The EEN along with iron and vitamin D supplementation have made a world of difference for her. She has more energy, it's not perfect, but it's a noticeable difference.

Also, if you can cut out anything that causes you extra fatigue and stress, sometimes it has to be the social things if you need your energy for work - just do it and don't feel guilty. If you can ask anyone for help with anything personal, do it.

 

[wildbill_52280]

crohn's brings stress. but stress is always a part of life. many people with IBD suffer from fatigue, so in a way its normal. things to try: yogurt, green tea, vitamin d 1000iu, B multivitamin. Typically fatigue can be attributed to iron or b12 status, but can exist despite adequate blood levels. Eating too late at night also makes my fatigue worse the next day especially when I eat beans.

 

[libbyhughes]

I like the notebook idea Pilgrim. I think im going to use it My partner is a teacher so hes never been with me to my appointments, but maybe if I rearrange times for later in the day he might be able to join me.

My joint pain has increased today. Paracetamol doesn't do a thing! Its still in my legs and ankles but moved to my fingers so typing this and working on the till will be tough today.

Im looking forward to my day off on sunday...but then I need to tidy the house! No day is a rest dayx

 

[libbyhughes]

I have my MRI booked for 6th January and hospital booked for march for follow up.

Has anyone had an MRI on small intestine? If so does the machine go over your head? Im scared of small spaces

It also states I need to drink this solution before hand and will have a muscle relaxant and contrast medium - Can anyone explain what these are in normal terms?! haha

 

[DJW]

I have my MRI booked for 6th January and hospital booked for march for follow up.

Has anyone had an MRI on small intestine? If so does the machine go over your head? Im scared of small spaces

It also states I need to drink this solution before hand and will have a muscle relaxant and contrast medium - Can anyone explain what these are in normal terms?! haha

I had on about a year and a half ago. I don'trecall if iI had if contrast or not. I went in head first. I brought a CD to listen to. They gave me headphones and piped the music in from the control room. I think it took about 20 min from what I recall.

 

[Pilgrim]

We haven't had the MRI, but she did a SBFT with contrast. She hated the contrast fluid (barium). I understand if you can drink it with a straw you can bypass some of your taste buds.