Struggling with recent Crohn's diagnosis

[skendall]

Hi everyone,
I'm new to this whole forum thing, but I decided to give it a try. I'm a 16 year old who was recently diagnosed with Crohn's disease. I am at a complete loss for what to do. I've been put on prednisone, which has given me the "moon face" and made me gain so much weight. I was underweight before, but I've gained all that weight back and then some. My clothes are starting to not fit me, and I barely go a day without someone commenting on how my face looks like I "got my wisdom teeth out" or "like a chipmunk". I'm feeling more self-conscious then ever. I'm also under tons of stress from missing so much school. It's my junior year and I have no idea how to even start thinking about colleges when I have Crohn's to think about. My symptoms have improved since I've started taking all the medications, but I'm still having pretty persistent stomach pains.
My main question is: how on earth do I deal with all of this? I try to talk to my friends, but none of them understand anything about Crohn's. My parents are being as supportive as they can, but they don't really know anything about the disease either. I'm just struggling so much with the constant comments from people about my face and how I look. And I'm worried about college and how I will be able to function. Any suggestions and advice would be greatly appreciated. Thank you all so much for taking the time to read my post!

 

[dave13]

welcome Skendall! You will find support here.Your friends don't understand,are they willing to learn?I'm recently diagnosed and am going through friends and family not being familiar with crohn's.If you are o.k. talking about it tell your friends to ask you anytime they have a question.Might break the ice.

 

[valleysangel92]

Hello, welcome to the forum


Unfortunately, a lot of us suffer moon face and weight gain as side effects of pred, if you feel comfortable, you could tell the people commenting that the weight gain is something you can't control right now, and is the side effect of a vital medication. If they still make comments, tell them you find them insensitive and would appreciate it if they would stop.

You could try to educate your friends by telling them what crohns is like for you, tell them about the medications you personally have to take and how they make you feel. If you wanted, you could show them this forum, or show them leaflets if you can find any (there's some at www.crohnsandcolitis.org.uk) . If they are your true friends , your illness will not put them off or make them treat you differently. If they shun you then maybe they were never really your friend.

You could also show this place to your parents, my parents don't know a massive amount about crohns either, but do help with what they can, but I was diagnosed at 19 and already used to making choices about my health care.

I know it's hard, but try not to stress out about college. It is a big choice but there is always the opportunity to return to studying later on if you need to take a break after school, but by then, you could be in stable remission so don't give up completely. For now, you need yo focus on your health, do your school teachers know of your situation?

You will get a lot of support here, we are all in similar situations and we all know what this disease can do. You could find our teenage section helpful too. Feel free to rant and rave and to ask anything you need, we'll do everything we can to help you.


Also - heat packs are my best friends, they work very well for stomach aches for most of us and you can get one's which stick to the skin underneath clothing which you'd be able to use in school without anyone noticing if you needed.

 

[DJW]

Hi and welcome to the forum. Just want to send you my support and best wishes. This is a great forum.

 

[skendall]

Thanks for the warm welcome everyone! :ysmile: I actually talked more to my friends today about the disease, and explained some of the effects of my medication, because this morning my symptoms were awful. I missed the bus to school because of the abdominal, and when I finally came into class I was in tears. My friends were so supportive of me, which was great! They took me aside and let me vent, and helped to cheer me up. When someone went to make a comment about my face, one of my friends stood up for me and told them to drop it. They were extremely understanding about everything!
valleysangel92, you mentioned telling my teachers. This is actually something I have been debating for a long time. I'm not sure if I want to tell my teachers about the disease, because I'd feel awkward and embarrassed. However, I know it would take a weight off my shoulders, because I wouldn't have to worry about them having problems with me using the restroom during class or being late. I just don't know how I would even go about telling them. In fact, I've barely told anyone except my closest friends and relatives. What do you think? Do you think it's necessary that my teachers know I have Crohn's? I also play soccer for my school and for a travel team, and I've been debating on whether or not I need to tell my coaches as well. I know I probably should, but I'm still so embarrassed and I'm afraid of what they would think, or that they would treat me differently, if that makes any sense. Thanks again to everyone for the advice and support!

 

[leah H]

It's hard enough for an adult to deal with this diagnosis, much less a teen. I do think you need to tell your coaches what is going on.

Don't let your doctors tell you that food has nothing to do with this disease. Certain foods make matters worse ( like fiber, raw fruits and veggies, salad, coffee…etc.) . And then there are the food intolerances. Many people with an IBD feel much better going gluten free. Dairy can also cause major issues when your gut is inflamed.

Think about keeping a food/symptom journal to help you figure out what bothers you.
Also, remember that stress can make things worse, so try to stay calm.

Good luck
Leah

 

[valleysangel92]

Thanks for the warm welcome everyone! :ysmile: I actually talked more to my friends today about the disease, and explained some of the effects of my medication, because this morning my symptoms were awful. I missed the bus to school because of the abdominal, and when I finally came into class I was in tears. My friends were so supportive of me, which was great! They took me aside and let me vent, and helped to cheer me up. When someone went to make a comment about my face, one of my friends stood up for me and told them to drop it. They were extremely understanding about everything!
valleysangel92, you mentioned telling my teachers. This is actually something I have been debating for a long time. I'm not sure if I want to tell my teachers about the disease, because I'd feel awkward and embarrassed. However, I know it would take a weight off my shoulders, because I wouldn't have to worry about them having problems with me using the restroom during class or being late. I just don't know how I would even go about telling them. In fact, I've barely told anyone except my closest friends and relatives. What do you think? Do you think it's necessary that my teachers know I have Crohn's? I also play soccer for my school and for a travel team, and I've been debating on whether or not I need to tell my coaches as well. I know I probably should, but I'm still so embarrassed and I'm afraid of what they would think, or that they would treat me differently, if that makes any sense. Thanks again to everyone for the advice and support!

That's awesome! It's great that you're friends were so supportive of you and good on you for telling them I know it's not easy but the support of your friends will be invaluable.

Yes I would think you need to tell your teachers, as you said , that way they should be understanding if you need the bathroom a lot or if you miss school or are late, also, you need them to know incase it affects your ability to carry out certain tasks (for example if you're in too much pain to do P.E.) and you may be allowed extra time to do essays etc to allow for your symptoms and you may also be allowed extra time in exams so that you don't miss out if you need to use the bathroom or if your having problems concentrating. I know it can be hard talking to them but I think the website I mentioned has links for leaflets and things for teachers if you want some help, and we will all support you too!

 

[skendall]

That's awesome! It's great that you're friends were so supportive of you and good on you for telling them I know it's not easy but the support of your friends will be invaluable.

Yes I would think you need to tell your teachers, as you said , that way they should be understanding if you need the bathroom a lot or if you miss school or are late, also, you need them to know incase it affects your ability to carry out certain tasks (for example if you're in too much pain to do P.E.) and you may be allowed extra time to do essays etc to allow for your symptoms and you may also be allowed extra time in exams so that you don't miss out if you need to use the bathroom or if your having problems concentrating. I know it can be hard talking to them but I think the website I mentioned has links for leaflets and things for teachers if you want some help, and we will all support you too!

How do you think I should tell them? My guidance counselor, who was helping me keep organized with all my absences last semester, has left on medical leave for some unknown amount of time, and I normally would have gone to her and asked her to send e-mails to my teachers, or maybe talk with the school nurse. But since she's gone, I don't really know how to go about all this. I don't want to randomly approach my teachers and say "Hey! I have Crohn's!"; maybe I'm just really awkward:redface: Do you think I should have my doctor send them an e-mail? Sorry, I just have so many questions and I don't know where to start...

 

[dave13]

Do you have a teacher you feel more comfortable with? A faculty member you can talk to? A communication between your Dr. and the school nurse perhaps? It may make school less stressfull if you knew you had teachers who understand what you are going through.

 

[valleysangel92]

How do you think I should tell them? My guidance counselor, who was helping me keep organized with all my absences last semester, has left on medical leave for some unknown amount of time, and I normally would have gone to her and asked her to send e-mails to my teachers, or maybe talk with the school nurse. But since she's gone, I don't really know how to go about all this. I don't want to randomly approach my teachers and say "Hey! I have Crohn's!"; maybe I'm just really awkward:redface: Do you think I should have my doctor send them an e-mail? Sorry, I just have so many questions and I don't know where to start...

You could have your parents send a letter to your teachers, or ask them to arrange a meeting for you to speak to them... When it came to telling my uni lecturers about it I just came out with it, but, they were all trained nurses, so it was easier. Talking to the school nurse could be a good option, or you could contact your IBD nurse (your GI can give you the number) and ask them if they would mind calling your teachers or even popping into the school to speak to them. If you want to speak to them yourself, you could ask a parent to be with you at the time, or ask one of your friends if they would mind supporting you. You could start by saying ' I would like to have a word with you if you have a few minutes ' or 'there's something I would like to discuss with you, it's a little delicate ' thats how I used to approach school teachers. You could continue by saying something like ' I've been missing a lot of school lately, which is because... ' or ' I'm having concerns about keeping up with school work because... ' I hope this helps!

 

[Naturelover]

You mentioned your stomach hurting. Please be aware that many steriods can cause gastritis or ulcers. If you have any stools that are black and tarry, let your doc know asap. If you feel nauseous and you didn't before starting the steriods, please let your doc know. We care about you and want you to feel better.

 

[skendall]

Thanks for the advice everyone. Lots of good news from the past couple of days! First, my guidance counselor finally came back, and immediately scheduled an appointment to meet with me and see how I was doing. She discussed getting me a 504 Plan and found one written specifically to meet the needs of Crohn's patients. The plan makes accommodations for me (ex: making sure I can use the restroom whenever I need, even during tests, without being penalized) which will alleviate TONS of stress. This also addresses the problem of letting my teachers know. Apparently there has to be a large meeting with my teachers, counselor, and parents, in order to approve the 504 Plan; they'll be informed in this meeting about the complications of Crohn's and how it may effect me in the classroom. This is a huge weight off of my shoulders, because I won't have to go through the struggle of telling my teachers myself.
Also, as I mentioned before, I've been struggling a lot with the side effects of the prednisone, so my mom called my doctor today to see what options we had. My doctor said I could start weaning off the prednisone! I can decrease the dose from 40mg a day to 35mg, and after 2 weeks we are going to see how I feel. However she also wants to make sure that the bleeding/inflammation in my colon doesn't get worse, so she may increase the dosage of my Apriso, and is also considering adding a new medication. But I don't really mind, because I've been so miserable on the prednisone. Although upon doing some research, I've found that weaning off can be rough too. I've been taking it for a couple months now so I don't know if I will have trouble with tapering the dose. Would anyone who has had to wean off prednisone be willing to share how it effected them?
Overall, the past 2 days have brought some much-welcomed relief

 

[leah H]

Good news about the meeting with the faculty.
Weaning off Pred can be tricky. Just do it slowly.
And please remember to change your diet. If your parents can afford it, there is a lab in Texas called Enterolab ( look it up) that can test a stool sample that you send in for food intolerances. If we continue to eat the foods that cause inflammation, then it's very hard to get off any of the drugs because you are continually eating the things your body reacts to.
Good luck
Leah

 

[dave13]

Good to hear Skendall!