Hello everyone.. my name is Selena I’m 21 and I’ve been diagnosed with Crohns about 2 weeks ago. It all makes sense now I never had energy to do the most simple things for years honestly. My parents swore I was lazy but I literally just couldnt find the energy to get up some mornings. I had my first flare 2 weeks ago which I thought was maybe an infection or something but after a week in the hospital and getting poked everyday some days twice a day (I am terrified of needles by the way), catscan, ultrasounds, and finally the MRI it turned out to be Crohn’s. I was shocked I obviously cried I still do.. this disease is very frustrating. I’m struggling on figuring out what to eat I’m really scared to go back to the hospital just because of something i ate should I just try different things and wing it? Does anyone have any recommendations. I am honestly so lost with this. I am currently on 60 mg of prednisone a day, my pain medication doesn’t help much at all truly as it is a non narcotic pain med. I’m constantly hungry even when I’m not hungry. I know this is a lot to read I’m sorry guys lol just need some guidance even if it’s not with food pls help thank you!
Newly diagnosed
- Thread starter Selenae
- Start date
Help Support Crohn's Disease Forum:
Anna's Bandit
Member
Well I suffered with Ulcerative Colitis for 20 years until last month when I was diagnosed with Crohns. Inflammatory Bowel Diseases are not "one size fits all", that is for sure. So much frustration, disappointment and so many unanswered questions. My experiences are minimal and my education is limited compared to many folks on the forum. Right now I am only able to tolerate liquids. My doctor is prescribing me Humira injection pens. He did not start with prednisone first, so I hope my Health Insurance Company will approve the Humira. Plus I am applying for financial assistance from a foundation to pay for my Humira.
I am sorry you had to spend a week in the hospital. I have had all the same testing, but not in the hospital. Ron is right, a food diary is a good idea. Did you have your stool tested for C-diff, C-diff is an intestinal infection. I had C-diff in 2015 and it caused frequent diarrhea.
I read almost all the posts on this forum and I have learned so much.
Sending you my support
I am sorry you had to spend a week in the hospital. I have had all the same testing, but not in the hospital. Ron is right, a food diary is a good idea. Did you have your stool tested for C-diff, C-diff is an intestinal infection. I had C-diff in 2015 and it caused frequent diarrhea.
I read almost all the posts on this forum and I have learned so much.
Sending you my support
- Joined
- Oct 22, 2016
- Messages
- 556
There a few different types of diet you can try: the low FODMAP diet, SCD (the specific carbohydrate diet), and IBD-AID. I pretty much follow the low FODMAP diet. Below are links to more information about these diets.
https://www.dietvsdisease.org/diy-low-fodmap-diet/
https://www.dietvsdisease.org/specific-carbohydrate-diet/
https://www.umassmed.edu/nutrition/ibd/ibdaid/
An excellent site for all kinds of nutritional advice is this one:
https://www.umassmed.edu/nutrition/ibd/
Do you have an appointment with your GI to discuss your treatment plan? He or she can recommend a nutritionist so you can get more detailed information if you’d like. Until then, don’t be afraid to ask your GP for advice or even an appointment to go over things. Please let us know how you are going on.
https://www.dietvsdisease.org/diy-low-fodmap-diet/
https://www.dietvsdisease.org/specific-carbohydrate-diet/
https://www.umassmed.edu/nutrition/ibd/ibdaid/
An excellent site for all kinds of nutritional advice is this one:
https://www.umassmed.edu/nutrition/ibd/
Do you have an appointment with your GI to discuss your treatment plan? He or she can recommend a nutritionist so you can get more detailed information if you’d like. Until then, don’t be afraid to ask your GP for advice or even an appointment to go over things. Please let us know how you are going on.
yes I figured out dairy was bothering me even before I was actually diagnosed with Crohn’s disease I thought I just became lactose intolerant outnof the blue and then boom! It was Crohn’s all along. I now switched to almond milk and I even use and olive oil based butter to substitute regular butter. I’m scared to try fruits and vegetables everyone is so different with Crohn’s it’s like you basically have to try foods and see what bothers you.. hope for the best.. it’s kind of scary flares are so very painful I can’t even breath sometimes.. excruciating. As for medication I just started my Crohn’s meds today he put me on apriso (mesalamine) 0.375g 4 times a day as well as prednisone I didn’t want the Percocet because I wanted a non narcotic pain killer as I’m in the Army but it looks like I’m going to get a medical discharge for this one.. so might as well change to a better pain med but thank you so much!! I appreciate it
I’ve heard good and bad things about Humira my doctor also talked to me about putting me on this as well but I asked him to start me on a different medication I’m on apriso just started it today so we will see how that goes! I hope everything works out for you with the Humira god bless you! God bless all us crohnies!!! Such an expensive and painful disease to deal with! But oh yes! My stool was tested in the hospital for C-diff everything came back clear then that’s when my doctor ordered the MRI and found I in fact have Crohn’s. These forums literally have been all I’ve been on for the past two weeks it’s amazing seeing everyone come together and support one another. Dairy is a big no no for me I learned that the hard way lol! Thank you for your support I hope everything works out in your favor and I hope you have a speedy recoveryWell I suffered with Ulcerative Colitis for 20 years until last month when I was diagnosed with Crohns. Inflammatory Bowel Diseases are not "one size fits all", that is for sure. So much frustration, disappointment and so many unanswered questions. My experiences are minimal and my education is limited compared to many folks on the forum. Right now I am only able to tolerate liquids. My doctor is prescribing me Humira injection pens. He did not start with prednisone first, so I hope my Health Insurance Company will approve the Humira. Plus I am applying for financial assistance from a foundation to pay for my Humira.
I am sorry you had to spend a week in the hospital. I have had all the same testing, but not in the hospital. Ron is right, a food diary is a good idea. Did you have your stool tested for C-diff, C-diff is an intestinal infection. I had C-diff in 2015 and it caused frequent diarrhea.
I read almost all the posts on this forum and I have learned so much.
Sending you my support
This is very helpful thank
You so much! And basically my GI told me to try out different foods and see what bothers me but he did say absolutely no dairy as I already cut that out of my diet about a month ago anyway.. but I’m just scared to test the waters with different foods because when I flare it is severe excruciating pain and I do not want to go through that it feels like I’m getting stabbed every time I breath, torture! But I will definitely make an appointment with a nutritionist that seems like a great idea thank you so much I appreciate you!!
curlywurly
Well-known member
Hi Selenae
Welcome to the forum I am sorry you are going through so much at the moment, as you have read from previous posts it seems to be a very individual disease.
I do hope you get more support from family and friends now that you have a diagnosis.
I myself have Crohn's and it can be difficult to find a medication that makes you feel better.
I think it is a very frustrating disease as people don't understand what you are going through.
This forum does help to make you feel less alone and you can vent if it helps.
I hope you settle down quickly keep your chin up we are all with you.
Welcome to the forum I am sorry you are going through so much at the moment, as you have read from previous posts it seems to be a very individual disease.
I do hope you get more support from family and friends now that you have a diagnosis.
I myself have Crohn's and it can be difficult to find a medication that makes you feel better.
I think it is a very frustrating disease as people don't understand what you are going through.
This forum does help to make you feel less alone and you can vent if it helps.
I hope you settle down quickly keep your chin up we are all with you.
- Joined
- Dec 13, 2017
- Messages
- 76
Welcome to the forums Selenae, so sorry to hear about your Crohn's troubles, at the same time though it's great you have a diagnosis and now you can take steps towards getting better. There is so much knowledge on this forum I am sure you will learn a lot here and get good advice and support 
Agree with ronroush on the food diary, it may help you identify some issues in your diet. Record your food, how you're feeling, bowel movements and so on. From what I've read dairy, gluten, processed foods and high fibre foods are some of the more common areas people have issue with. Hope you can start to feel better soon!
Agree with ronroush on the food diary, it may help you identify some issues in your diet. Record your food, how you're feeling, bowel movements and so on. From what I've read dairy, gluten, processed foods and high fibre foods are some of the more common areas people have issue with. Hope you can start to feel better soon!
