Overwhelmed

[Eri01z]

Hi everyone,
I am 18 years old and a college freshman. I’ve had type 1 diabetes and Crohn’s disease since I was 11/12. Over the summer things weren’t going well with my mom and her bf so a few weeks ago I moved in with my aunt and little cousins. Since then I kinda feel like I’m dealing with everything on my own. I might have gastroparesis but I’m not underweight. Actually I feel fat. Considering how thin I used to be. But I’m gonna get tested for it. I am nauseous all the time, I throw up sometimes, l get full fast but I’m always hungry especially since I’m on prednisone right now. I started stelara in the spring I don’t know if it’s doing anything since I just had a partial obstruction. I don’t know what decisions to make for myself. I’m overwhelmed and scared and just wanna give up. Adulting is hard.

 

[Jo-mom]

So sorry you are dealing with all this on your own. Is there any family member that might be able to help you through this? You mentioned you moved away from your mom but can you still contact her for help? Have you visited your GI lately? Taggiing @my little penguin, @Maya142 and @crohnsinct that have had more experience with gastroparesis and that might offer you some suggestions. Hug.

 

[crohnsinct]

Hey Girl! I have a 19 turning 20 year old Crohnie daughter who was also dx'd at 11 1/2! She is away at college and also just switched her med to Entyvio and it is 21 weeks later and we still aren't sure if it is working. She also went to school her freshman year in a flare ands been in one ever since (she is a junior now).

Are you away at school or are you commuting?

Does your school have a counseling office? Their services are included in your tuition and they could be an excellent resource for helping you deal with all of these pressures. College on it's own is tough. Add in the family dynamics and the health issues and man you have a full plate so there is no wonder you are struggling right now. But you seem like a really smart girl and to come on here and ask for help? Wow! Strong!

If you are commuting to school and are still close to your GI's office, I would encourage you to ask them if they have a psychologist in their IBD center who you could speak with.

Also, see if CCFA (I am assuming you are in the US) has a local chapter that you could connect with. They have some awesome support groups AND there may even be a campus chapter at your school or a nearby school.

Now for the medical issues. Where is your disease primarily located? I am guessing small bowel. If so, the nausea and feeling full early could very well be from disease activity. Could be GP also and it is great that you are getting tested for it but I wouldn't rule out disease activity at this point. When were your last labs? How were they? When was the last time you saw your GI? If you are away at school, do you have a GI near school helping you?

PM me if you want me with your location and email if you would like my daughter to reach out to you. There is also a teens section here but IDK how active they are these days.

Come on here anytime to ask questions or vent. There is always someone online and we are happy to help in any way we could.

 

[Eri01z]

Thanks guys I’m not away at college, I drive there. The other stressful thing that happened is my car died and I spent 700 fixing it and then it died again and I don’t have any money and neither does my aunt. I lost my job I just started that I really liked. So I have over an hour drive to school but my aunts letting me take her car after I drop her at work. I’m really stressed because I think I shouldn’t have picked nursing because I doubt I’ll be able to do the job with my health problems. I don’t know if it’s realistic but that’s what I got a scholarship for. I already missed a week of classes. I like school but I feel like quitting. I won’t tho. The last labs was when I was in the hospital. All I know is they showed inflammation. I sW my GI after and he’s been wanting to test for gastroparesis. Hopefully I don’t have it. What do they even do for it? I don’t have an appt yet. I live in Maryland and I go to school in Pennsylvania. This isn’t how I thought things would be when I was in college. Oh I have a question, do u go to the doctors with your daughter? I just always think I’m 18 I should be fine going by myself but I hate going alone and I don’t know if I’m immature about that.

 

[Jo-mom]

Hi, I can at least answer that last question. Having crohn's can be overwhelming for anyone let alone a young person. You are only 18 and having someone go with you is NOT IMMATURE. My son was diagnosed at 19 and just turned 21 and I go to all his Rheumatologist and GI appoiintments. I know Crohnsinct will answer your questiions and I know she is very involved with her daughters' treatment and doctor visits.

As for gastroparesis, I believe they have medication for it. Again, you will probably get a fuller and better answer from one of the other mom's in due time. Don't quite college. I know it's very tough for you right now but if you can ride it out and continue, then it will be rewarding. Don't let crohn's stop you!

 

[crohnsinct]

Not immature in the least! I still go with O, although I think she wishes I wouldn't. I personally think that anyone with a chronic illness should bring someone with them to appointments. A lot gets discussed and you sometimes miss bits or pieces or hear things differently so having an extra set of ears is never a bad thing. Add to it that a lot of the time when you are in the GI's office, you are not feeling great and heck yeah, someone should with you.

Does your school have a "disabilities and accommodations" office. Most colleges do. You should go there and get registered and explain to them the various accommodations you might need at school. This will help you with attendance issues, assignments, tests etc. That said, if you have missed a week, that is a lot of time to make up in college. It is not like high school. Things move fast. Only you know your school and how behind you feel but now may be the time to start discussions with your professors, academic counseling etc about whether or not you should continue the semester. DO NOT QUIT SCHOOL! AT the most I would say, withdraw from the semester and defer your start date to the spring. There will be monetary considerations with this though. My daughter had to withdraw from her summer semester. Her school's policy is very generous. If it is a medical withdrawal, they refund all tuition not used and just pro rate tuition and charge you for the classes attended. This is something the disabilities office can help you figure out but you have to reach out to them right away.

Maya and MLP have kids with GP. They can help you with the meds question but I am pretty sure there are meds for it.

Your other priority item would be to get that appointment with the GI. You really want to know if this is GP or your Crohn's acting up. The sooner you get in there the sooner they can get you feeling better.

I would also ask the GI if you could do labs again. I would include a fecal calprotectin test on that lab request. It is a very good indicator of Crohn's activity without having to prep and drag into the hospital for procedures and such.

Do you have someone helping you with all the insurance and billing issues. Those can be a bear. If no one in. your family is well versed with that stuff see if the hospital your doc works at has a social worker. They can help you figure all that stuff out.

 

[Eri01z]

I am caught up with everything. I had a 504 plan in school, I didn’t know I could get something like that in college. I’ll look into it. I’ll write down those tests and ask them about it. I won’t quit school. I was just feeling stressed. I have free health insurance cus im poor lol Thanks for helping me, I’m feeling a little better now.

 

[paddywack]

Adulting IS hard!

I stared with dysphagia when I was 12/13 but was told i was making it up, so I went untreated until early 20s. Dx'd with esophageal lichen planus (which is weird, docs think it's cool), and crohn's a few years later.

Sometimes parents need parents of their own. If that's the kind of relationship you have with your mom, a little space may be good. If it's not, GREAT!

I'm glad there are some more experienced people here to offer support.