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Recently diagnosed so confused feeling alone

Hello all,
I recently just diagnosed with crohns disease at the age of 22. No one in my family has this no one in my family has a autoimmune disease i have no clue where this came from but I know it doesn't matter because I have it. I don't know much about it all i know is from the time I got diagnosed the extreme amount of pain I had and the blood in my stool. `i got put on medication from my gi specialist and i currently take steroids because I have no recovered fully from my introduction phase. I have no clue what to eat, I am tired a lot on my bad days, I have to go the bathroom a lot more than i ever did (5 times a day) and sometimes my gut hurts. i am just so confused about the disease in general and what to do. I feel like my whole world is about to change once i go back to my gi dr. I am also scare once i come off these steroids I will be back to laying in bed in the fetal position because of the pain.
 
Welcome. You can try a food diary to determine which foods agree or disagree with your system. Also, you might ask your doctor about blood work if he hasn't already done any. This could help determine why you are always tired. I wish you the best. Come here anytime.
 
Welcome weetpeabexx, you've come to the right place for support, really sorry to hear about the pain you've been experiencing.
Agree with ronroush a food diary is a good place to start, from what I've read lactose and gluten can be common offenders but everyone is different. Good luck :)
 
oh yes milk products hurt my stomach, so i learned to stay away from them. drinking is another big one for me some days i can have a glass of wine and be fine but others i cannot cause ill be hurting. I am coming off my steroids and i don't think my medication is working i am hurting sometimes (rarely but it hurts) i have started throwing up again and my bathroom habits have increased but at least there no blood.
 
The beginning is such a confusing time, read as much as you can. Best bet is to eat whole grain oats and reduce lactose/milk sugar and refined sugar intake, take some vitamin d supps too. Many other tips that will help though.

Suspected causes of IBD are Vit D deficit, exposure to antibiotics, low fiber diet, high animal fat diet, exposure to emulsifiers in processed foods like modified food starch etc. titanium dioxide in many processed junk food. Potential cure is replenishing lost microbial species that live along the intestinal lining in a treatment called fecal microbiota transplant, follow my thread in the link below to keep up with the progress of this treatment.
 
oh yes milk products hurt my stomach, so i learned to stay away from them. drinking is another big one for me some days i can have a glass of wine and be fine but others i cannot cause ill be hurting. I am coming off my steroids and i don't think my medication is working i am hurting sometimes (rarely but it hurts) i have started throwing up again and my bathroom habits have increased but at least there no blood.
Talk to your doctor. It sounds like he needs to change your medicines. I wish you the best.
 
Location
Australia
Hang in there kid. I got diagnosed at your age, and it's about 25 years later and I'm still here. I was crook as when I was diagnosed. And back then the internet didn't exist. I was totally flying blind, and there was not support group for me to tap into.
I got into remission, and stayed there. Got crook again, then another lengthy period of remission. Now - horrible flare that is very recalcitrant.
The things I have learnt - don't be afraid of the drugs that bring you remission. Use them in a way that enables you to get the best out of that remission. This advice excludes Pred. Always use Pred with caution and respect. But use it if you need it.
You never know when your remission will end, and often why it has ended - so squeeze as much out of it as you can.
When you feel crook - it won't last forever. You will get better. It probably won't work to the timetable you have in your head though. Crohns is a lesson in humility.
Surround yourself with good compassionate caring people. If they are not - they don't deserve to share your journey with you. These people are out there. Find them. Crohns won't stop you from meeting the right people, it will stop you meeting the wrong people. And the people on this site are an amazing group of incredibly supportive people. People here have helped me through my darkest days. I've never even met them face to face, but I certainly count them as my friends.
Everything will be ok. No matter how bad it might seem.
 
Hang in there kid. I got diagnosed at your age, and it's about 25 years later and I'm still here. I was crook as when I was diagnosed. And back then the internet didn't exist. I was totally flying blind, and there was not support group for me to tap into.
I got into remission, and stayed there. Got crook again, then another lengthy period of remission. Now - horrible flare that is very recalcitrant.
The things I have learnt - don't be afraid of the drugs that bring you remission. Use them in a way that enables you to get the best out of that remission. This advice excludes Pred. Always use Pred with caution and respect. But use it if you need it.
You never know when your remission will end, and often why it has ended - so squeeze as much out of it as you can.
When you feel crook - it won't last forever. You will get better. It probably won't work to the timetable you have in your head though. Crohns is a lesson in humility.
Surround yourself with good compassionate caring people. If they are not - they don't deserve to share your journey with you. These people are out there. Find them. Crohns won't stop you from meeting the right people, it will stop you meeting the wrong people. And the people on this site are an amazing group of incredibly supportive people. People here have helped me through my darkest days. I've never even met them face to face, but I certainly count them as my friends.
Everything will be ok. No matter how bad it might seem.
thank you so much for your kind words it my first day off steroids and i feel ok not my best but i am learning on my good days i make the most of it
 
I know how you feel, the biggest question I asked was "Why me?". Than I came to realize that most people will go through major medical problems in their lives, so you really aren't alone. Your just experiencing it at a younger age than most. I was diagnosed 34, a relatively young age as well. Your symptoms will get better and you will be able to live a normal life again. Just try to find the right medications and therapy that can help you maintain the remission. Think of it this way, your learning at an early age how to eat properly, maintain your stress levels, exercise regularly, these things will all help you maintain a remission state. You are not alone.
 
I know how you feel, the biggest question I asked was "Why me?". Than I came to realize that most people will go through major medical problems in their lives, so you really aren't alone. Your just experiencing it at a younger age than most. I was diagnosed 34, a relatively young age as well. Your symptoms will get better and you will be able to live a normal life again. Just try to find the right medications and therapy that can help you maintain the remission. Think of it this way, your learning at an early age how to eat properly, maintain your stress levels, exercise regularly, these things will all help you maintain a remission state. You are not alone.
thank you so much for your kind words
 
I know how you feel, the biggest question I asked was "Why me?". Than I came to realize that most people will go through major medical problems in their lives, so you really aren't alone. Your just experiencing it at a younger age than most. I was diagnosed 34, a relatively young age as well. Your symptoms will get better and you will be able to live a normal life again. Just try to find the right medications and therapy that can help you maintain the remission. Think of it this way, your learning at an early age how to eat properly, maintain your stress levels, exercise regularly, these things will all help you maintain a remission state. You are not alone.
Agree.
 
i have zero motivation to excersise I'm gaining weight horribly. did anyone else have this problem when first diagnosed
I recently got diagnosed and I'm still on those steroids and btw I joined the gym and all the members at the gym look at me like some alien. But I don't care man. We're all the same with different problems due to different circumstances. And yeah I've gained some weight too
 
i have zero motivation to excersise I'm gaining weight horribly. did anyone else have this problem when first diagnosed
I try to run regularly but my motivation really does take big dips, one thing that's helped me is making a totally new goal. I installed a pull-up bar recently and I can only do a few 'lowering' exercises each day, but I am already improving, maybe there's a different exercise you can find that's more enjoyable and you'll have more motivation for it?
 
I try to run regularly but my motivation really does take big dips, one thing that's helped me is making a totally new goal. I installed a pull-up bar recently and I can only do a few 'lowering' exercises each day, but I am already improving, maybe there's a different exercise you can find that's more enjoyable and you'll have more motivation for it?
I'm trying when i was younger i liked to do sit up. i think I'm going to start taking our dog for a walk for volunteer at an animal shelter and walk the animals.
 
Hi weetpeabexx! It's so confusing when you're first diagnosed isn't it, I was diagnosed when I was 12 and I'm 22 now. There are plenty of ups and downs but things do get better and you can live a normal life.
I feel your pain with the steroids, I hated every minute of being on them and suffered weight gain and bloating. But it's a temporary thing to make you better in the long run and once you're off them you'll hopefully be feeling a lot better and the weight will soon come off. Once you come off the steroids there are medications that can be used to maintain remission if needed so try not to worry about going back to square one, the only way is up 🙂
Take care of yourself X
 
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