Crohn's fatigue

[MumsyLove]

What are the ways you manage/prevent Crohn's-related fatigue? Any thoughts or tips welcome.

[Delzek]

I really wish I knew,I feel completely burnt out all the time,I know its not only the Crohns that causes it, but I think it's the main Reasons.

[jackdup]

I hope you get some replies as I would love a solution as well.

[saj12]

My employer has been very good and pretty much have allowed my freedom to work at home and come onsite as required - has helped my fatigue issues

[Tillymay]

I was just going to post the same question my other half is drained and tired all the time.Its a very unfair illness x

[MumsyLove in reply to Tillymay]

The chronic inflammation makes the body so tired from being always a little sick-like, and the meds to help the inflammation can also make the body tired from being always in healing mode-like.

[Tillymay in reply to MumsyLove]

Thank you for the feed back he was just going to stop his medication.but I told him you can’t just stop it will make you feel worse.he is on azathioprine.and has a blood test every 3 months.I feel so sorry for people with this illness x

[MumsyLove in reply to Tillymay]

Tired from healing is way better than tired from illness. If bloodwork hasn't been checked, there can be some indicators of what to do to support the fatigue. A psychiatrist can help as well (has with us). Some antidepressants are activating, there are other pharmaceuticals that stimulate various systems for some support (do not want to name them because I am not a doctor, so don't want to misstep boundaries). I know asking and trying is even exhausting, yet also if you find the perfect care provider it feels like a buddy helping you through. My 17 year old has two therapists and a psychiatrist. All are like cheerleaders. They listen a lot and when he is ready to try something they offer something, but sometimes they don't talk about fixing things at all...sometimes they just talk about music or the world or how weird the body is...or whatever. My son has food anxiety bc it has caused pain for so long (and we didn't know it was Crohn's) so he is relearning how to engage with food so he can both enjoy social gatherings AND gain weight. He is inconsistent with following the protocol, bc it is annoying to think you are learning to eat at 17. The person he works with on food doesn't skip a beat, they just say "well, it wasn't the week for it...what else is going on in life?" The world is set up for climbing the ladder, progressing in grades, every year means something, the idea that growth and wellness is a linear path. It is not. It is a messy scribble, for all of us. The more we admit that and realize this is a big long improv skit, the better off we are. I wish you gentle days.

[Tillymay in reply to MumsyLove]

Thank you so much.food is a big problem because he likes Indian food but it’s one of the foods that doesn’t agree with him.Ive asked for a foods list before on what good for crohns but just got told everyone is different.I feel so sorry for your son going through this he is only young.has anyone else in the family got it? X

[MumsyLove in reply to Tillymay]

Not that we are aware of. I wonder if there is a network of people in India who have Crohn's and adapt their traditional cuisine? The more I get into this, and read people's posts, I feel that the change in food is actually a serious grief process. Letting go of what you love, what you've known, a social connector, a part of your identity even. Working with it as grief might be a helpful place to start.

[Tillymay in reply to MumsyLove]

There must be some people in India with this illness and your right it’s bad enough living with this illness.without having to give the foods you love.x

[Cylarreta in reply to MumsyLove]

I’m not Indian but have you had Kitchari? Through someone that I know who practices Ayurvedic medicine, I’ve heard it’s healing.

[SORRELHIPPO]

I had my bloods checked, things were better when I was given regular B12 injections and started to take vit D3.

[MumsyLove in reply to SORRELHIPPO]

Thank you!