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Need support

Hi everyone :) my name is Hannah and I am 17 years old. I'll start off with some background information- I was in And out of the hospital a lot from ages 11-13 and then finally diagnosed with Crohn's disease at age 14. I started getting remicade infusions every 8 weeks along with weekly shots for being anemic. I've struggled with it a lot but for the most part managed to live a pretty normal life up until recently. I'm usually not one to complain but it's all gotten to be too much to handle and I guess I just need somewhere to turn to, so I'm hoping to find some support. As I'm sure most of you know, remicade works by suppressing the immune system. I've always gotten sick a little easier but it was always minor stuff that was easily treated. Recently, I've been in a rough patch that I just can't seem to get out of. It started off when I was visiting my brother in Colorado. I had a really uncomfortable rash on my leg so I went to a hospital there and was diagnosed with shingles. I stayed at my brothers house for 2 more days before returning home and was sick and miserable the whole time. Upon returning home I noticed that the rash had spread throughout my whole body in random places so I ended up being hospitalized with deseminated varicella due to the remicade. The blisters became infected with staph and I was in the hospital for the first couple weeks of school. It took about a month for the blisters to completely heal and they left scars all over my body. Just as everything was healing up I noticed that I was having trouble breathing so I went to the doctor and was diagnosed with pneumonia. I just got over the pneumonia and now am facing a new set of problems. I haven't had an appetite the whole time I've been sick and haven't been able to maintain fluids at all so in turn, I have lost a significant amount of weight. I have always been extremely skinny so losing a lot of weight for me is a big concern. I'm waiting to see a specialist in a bigger hospital to figure out what to do to gain the weight back but in the meantime I am extremely dizzy and I even pass out sometimes. On top of all these medical issues my school isn't being very helpful despite my 504 plan. I had 3 teachers request that I drop their classes because I haven't been able to attend enough. I understand that I have a difficult situation to deal with but it doesn't seem fair to me that I should have to give up my education just because it's a lot of work to catch me up. I thought about fighting this, but at the end of the day I decided I was too tired and sick to deal with another thing so I ended up just dropping the classes. I spend most of my time laying in bed now so I have become extremely depressed. I have lost all of my friends while going through this as none of them understand or care enough to stick around. I guess I just feel like no one is working with me. I have never felt so helpless in my life. The worst part about everything to me is whenever I try tell my story anywhere else I can just feel that people don't care so I stopped trying to explain myself. I know it sounds stupid but I guess I just need someone to tell me that it's all gonna be okay. I need something to pull me through this because I'm out of strength physically and mentally. My family is supportive but they don't have any idea what I go through, and it would be extremely helpful to talk to someone who does. Any advice or words of encouragement would be strongly appreciated. Thanks for taking the time to read this.
 
Hannah,
So sorry you are struggling with this and feel as though you are doing it alone. Hopefully you can get stabilized soon.
Do you have a good GI you trust? I hope you meet a doctor at the new hospital you spoke of that will work with you.
What other Meds are you on and what is your diet like?
 
Thanks for taking the time to reply. :) I am currently only getting the remicade. I think my GI has good intentions but I'm not sure if she's doing everything that she should be. I actually got referred to the bigger hospital by another doctor that thought I should be doing more. As for the diet I'm not able to keep much down right now nor do I feel like eating but when I do I usually stay away from dairy products. :)
 
Stay strong Hannah. I will be okay. Like u stated hopefully u see a GI doctor soon. I took remicade it worked a lil bit but kept going back and forth to the hospital every 3 to 4 days. I am praying that everything goes well with you.
 
Stay strong. Even though it may not be motivational right now, you have your whole life ahead of you at 17. We all hit rough patches, but at the end of the day we know we have gotten through another one, and we just have to hold our head up and get through another. Hopefully the new GI will have some insight in how to help you out and how to put on some weight. You will make it through and the education that you are getting through having a chronic illness that is currently seeming to be flaring can me much more of a life lesson than anything learned in school, even though school is still important. You learn a lot having this horrible illness, but in the end I think that we all come out better, more caring, and more educated citizens of society that can help out more people than we will ever know, even if it is just by us sharing our story. You may not think people listen, but they do, and friends will come along that will see you through this. Hold you head up. You can do this.
 

DJW

Forum Monitor
Oh Hannah, you've been through so much.

This disease can be relentless. We feel it physically and emotionally. One thing I've found helpful is to do everything I can to remain hope full. (easier said than done...I know). I find it helpful to write out your plans for the future. Each day set a goal to accomplish something. Their are times when getting out of bed and dressed are big accomplishments.

Know that we are here for you if you want to talk or vent. Sending you my support.
 
Shalom hannah @hannah_26

So sorry to hear what you are going. Please be assured you are not going through this alone. These forums are great in helping us understand there are other people with crohns who fully understand and care. I have had crohns over 30 years and you have both good and bad days.
Please be assured of our prayers and support.

Shalom john (& marian) my wife of 47 years.
 
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Hey @hannah_26
Sorry to hear that you're feeling so crappy. I'm 16 and trying to get my head around my ulcerative colitis, I'm on all these meds which have terrible side effects that I'm yet to experience (so scared). I'm not going to school just quit my job and I'm just laying in bed thinking about how everything is just gunna get worse. I don't know how you're feeling but you're not the only one confused and upset about what's going on :(
 
I didn't develop Crohn's until college, but I have experience dealing with being sick in high school. At the age of 15, I had a traumatic brain injury. I missed a year of school, and returned back with a 504 plan. I think one of the most difficult things then, and even now at 26, is that we look "normal". It's so difficult not only for our peers to understand, also teachers, principals, doctors. At first, I thought that I would be fine, once high school was over, that older people would understand. Unfortunately, it's not the case. It's difficult, but there are decent people out there, that even if they don't understand, they are willing to try. It may not be, and most likely won't be the same people you were best friends with before. Just don't give up hope. There are people out there that care, that are willing to be there, and will support you. It's a long road ahead, but hang in there!
 
I think anyone really young teens,20,s and younger will be o.k longer term as there,s tons
of research going on,there will be an answer hopefully sooner rather than later.its off subject but it's just been announced here that a team in Poland and the uk have repaired a man,s spinal cord he can walk!that was believed impossible surely an answer to crohns is achievable I think it is.
 
Kayla,

I'm sorry to hear that you're going through this too. :/ I wouldn't wish it on anyone. im sure you will experience good days and bad ones but all you can really do is try your best to stay positive, even though it can be hard sometimes. Try not to worry about the side effects because they don't happen to everyone:) Being diagnosed with a chronic illness takes some time to get used to & it's definitely tough but believe it or not it does get easier with time. If you ever need someone to talk to feel free to message me :) I hope everything gets better for you!
 
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