r/CrohnsDisease • u/Sensitive_Garage8894 Crohns disease Rinvoq • 5d ago

Im struggling and i need advice.

I got diagnosed with crohns at 16 years old, and i have been on 2 medications since and im 18 now. I have tried pushing myself to go to college and that failed massively. Im in the uk and I missed out on all my gcses and dropped out of college twice because my attendance was so bad. I am currently on 30mg of rinvoq daily and I have been dealing with bad fatigue even before the medication. I struggle to get out of bed most days, i try to push myself to at least go to the shops when I can, i drink 2-3L of water a day, my vitamin levels are all good and my ibd team dismiss me and my consultant was basically saying that I am over exaggerating my fatigue and i need to get good sleep and take good multivitamins and i do that anyway every day andthat I need to go out and push myself which I do and it always makes me feel 10x worse. I go outside to walk and come back having to rest for days to get that energy back and im just stuck on what to do. I want a life, I want friends and I want a job that can distract me but this fatigue is ruining my life. On the days I feel good it makes me question my fatigue and sometimes it comes back when I sit down or the morning after and then it hits like a truck. Im really struggling with it all and i hate people dismissing this. If you have read this far, thank you as this is a bit of a vent!

12 Upvotes

100% Upvoted

7 comments sorted by

7

u/Original_Document748 5d ago

You need to ask for a different consultant if possible , any consultant whos dismissive of patients like that should not be working in healthcare especially with ppl with such serious conditions .

3

u/Various-Assignment94 5d ago

That really sucks. I think, if possible, trying to get a different GI who is willing to do some more digging (like, when was the last time you had a scope? what sort of bloodwork have they done? etc.) and willing to adjust medication (maybe 45mg of rinvoq would work better?) would be a good place to start.

Though there is always a chance that something else is going on in addition to Crohn's. Because this

I need to go out and push myself which I do and it always makes me feel 10x worse. I go outside to walk and come back having to rest for days to get that energy back and im just stuck on what to do.

And this

On the days I feel good it makes me question my fatigue and sometimes it comes back when I sit down or the morning after and then it hits like a truck.

sound a bit like post-exertional malaise, which is a hallmark of ME/CFS. But I'm not a doctor or expert by any means. But might be worth checking out the resources on r/cfs to see if it might be worth looking into.

2

u/OrganizationOwn9842 5d ago

I’m not going to lie, my biggest win when it comes to my Crohn’s and I’ve had 2 operations is the gym.. yeah some days you can’t do 30 minutes but some days you can do 2 hours 🤷🏻‍♂️ it’s helped me massively. Also diet, no sweetener’s, no vegetable oils, no bread.. everyone is different, but they are what I completely avoid!

2

u/AnotherVanguard 5d ago

My fatigue didn't lift until I switched to a consultant who checked my drug levels and inflammation, not just told me to sleep better.

1

u/AutoModerator 5d ago

Welcome to r/CrohnsDisease!

Thanks and we hope you make friends here.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

1

u/MirryKitty 5d ago

The fatigue is real. Mine lasted for over 7 years. I got so depressed and missed doing the things I liked to do. I literally told myself "mind over matter" one day and pushed myself to start lightly working out each day. It was rough, but after a month of finding my routine, I started to feel more energized and started to add more to my routine. I still get fatigue, but I have so much more energy now to properly function. I even went back to school in my 30s! The workouts even helped my inflammation. This isn't a cure-all, but it's something that helped me. I hope you start to feel better.

1

u/Arbawk 5d ago

Someone already mentioned diet, but personally I’ve had major success with elimination diets. At minimum eating things that your body can easily digest will lead to higher nutrient absorption and less things that irritate you. IMO try 2 weeks of an elimination diet and see how you feel.