Newly Diagnosed and New to the Forum!

Hi everyone! I’m 20 years old and was recently diagnosed with crohns this summer. Like many of you, my story is a long one but I’ll try to keep things short! I’m 5’9” and have always been stick thin. It didn’t really seem to be a problem until I started losing a bit of weight 4 years ago. I was actually called into the nurses office at school and asked if I had an eating disorder! I didn’t have an eating disorder but knew the constant stomach pain meant something else was wrong. I went to the doctor and after a whole year of tests I was diagnosed with celiac disease. I went gluten free and all that jazz, gained weight, went to college, and felt pretty good. Then the diarrhea happened. At first I would go once a day…but then it got worse. I went to a GI and they told me I was getting gluten cross contamination. By the time I was going to the bathroom 10 times a day and they kept telling me it was celiac I was getting depressed. Meanwhile, living on my college campus there was like no gluten free options. I tried living out of my fridge but the food was limited.

When I came home this spring I was feeling really sick. I was thin but afraid to weigh myself. I figured I would quickly gain weight with my mom’s cooking. But I was feeling really sick and getting even more frustrated.

When I walked into the psychologist’s office I was sat down and told I was going to die and I had to go to the hospital immediately. When I entered the hospital I weighed 83 pounds…my body had gone into starvation mode and I was told there was a good chance I would not have made it the rest of the summer. I was finally diagnosed with crohns and put on a strict diet.

I’ve been eating 4500 calories a day and have gained back 15 pounds. I’m going to the bathroom less but it’s still excruciating. I hate predisone and can’t wait to get off of it. Two nights ago for the fist time I had an issue with blood. LOTS of blood. So I’m starting remicade next week and am sort of nervous. I’m feeling like complete crap every day and can’t wait to get better...reading a lot of the stories on here gives me hope and I'm thankful to have found a community that can relate to the struggles!!
…I’m sorry that wasn’t so short haha

Hello, welcome to the forum

I'm sorry you've been so unwell. I'm glad you found us though . It is horrible being so unwell and not knowing why especially when others judge us or make assumptions. I got asked about anorexia too and it's not a pleasant experience. Now you have a diagnosis you can work with your doctors to find treatment that works for you.

I know prednisilone is a hard thing to take sometimes, the side effects can really get to you, but for many the positive effect is well worth it. Once you come off them the side effects will fade and you'll hopefully feel much better.

We have a treatment forum which includes a section on remicade where you can get support and information.

You might also find it helpful to keep a food and symptom diary. Write down all your meals and the symptoms you experience, score any pain from 1-10 with 10 being the worst.

Heat is really good for pain, and ginger and peppermint can settle bloating and nausea.

If you ever have questions don't be shy to ask and if you ever just want a chat, you are welcome to inbox me, I'm the same age as you so I can relate to you.

thanks for the welcome, it's so nice to have someone to relate to! The anorexia thing did get quite annoying...especially when no one believes you. The symptom diary seems like a really good idea, one of my doctors actually suggested it as well but I never got around to it..

I drink ginger tea on occasion..works wonderfully! and also I find a cold pack to feel really soothing

thank you for all the advice

Be carefully diet wise some healthy options are really bad for crohns,there loads of advice on here

Thank you! I'll definitely read up! I'm on a gluten free and lactose free diet and am trying to eat as organically as possible. lots of rice! lol after the bleeding I haven't been keeping up with the 4500 calories...I just feel like my gut needs a break

Chicken,fish are normally ok when things settle slowly add your more usual diet in,you,ll get bored senseless by rice,homemade soup I find is really good just make sure the veggies are well cooked and,or blended

haha yeah..the rice is getting old... I'm definitely going to have to look into breaking out some of our old soup recipes

Shelley,
Sorry you've been feeling so bad. I will tell you, I've been on Remicade over 10 years and it has been great for me. Hopefully now that you've been diagnosed and will be getting treatment,you will start to stabilize and feel better.

Welcome! Every crohns patient is so different just try what works for you. If you have any questions I have had it for 22 yrs

As I,m not sure how product promotion goes here a certain boxers health grill is usefull if you get the urge for bacon,sausage,hamburger gets rid of the fat and oil which isn't,t good for us crohnies,but only when things settle down,chicken is nice done in it.cheers

thank you all! I went today to get bloodwork done and all that jazz so I can start remicade soon. I'm very hopeful from what I've heard.

I have had the worst bacon cravings haha...I'm such a carnivore. I love me my red meat and steaks but I know my doctor said to avoid it. I mean I'm fine with chicken at the moment..there's a lot you can do with it.