18 with Crohn's Disease

[Neryo]

Hi everyone, I must say it's been a hell of a week for me. I went to bed last Friday with a sharp pain in my stomach and woke up the following days with exruciating pain.

I ended up going to see my pediatrician, and she basically was CONVINCED it was just a stomach virus. I was completely skeptical of this considering i've had stomach viruses and they didn't seem anything like what I was experiencing. So i gave it a few more days with no improvement and decided to see a specialist.

They ran blood tests and ct scans and they all pointed to Crohn's Disease... I had never even heard of this disease before a few days ago and now I have to live with it for the rest of my life.. I'm literally in my last few weeks of high school ever with my graduation coming up and now I'm dealing with this.

Going away to college and being indepenedent was a scary enough thought in itself but now I'm even more terrified. What if i have flare ups and can't do my work?

At the moment im on Prednisone. The only weird side effect of it so far has been auras (flashy colors in my vision lasting about 30 minutes.) I've had migraines with aura's every once in a while for years but ever since I started taking this I've gotten one a day.

I will be having my first colonoscopy as soon as school ends in early June. Needless to say I'm terrified. I've suffered with Anxiety problems all my life and medical proceedures have always scared me half to death. I once had a simple surgery only to find out afterwards that i had a bad reaction to the anestesia. So now im terrified of anestesia. My doctor convinced me this wouldn't happen again because they use a different type of anestesia but im still really scared ... well, based on what he finds in the colonoscopy he'll be perscribing me a medication to control it. I'm ... overwhelmed, scared, nervous, confused, and a lot of things right now.

All I can do is be thankful this isn't life threatening and roll with the punches.. Thanks to anyone out there who reads my whole rant :sign0085:

 

[Trysha]

Hello Neryo
It is very frightening to get a diagnosis like this at the tender age of 18.
As time goes by you will learn to cope with it all and one they get you into a remission you will be able to get on with your life without so much worry.
Most people find the hardest thing about colonoscopies is the prep the day before.
Now they have a prep called miralax which is a breeze to take.
When you have the colonoscopy you will not be aware of whats happening, they sedate you really well and will find something you don't react to, so try not to worry too much.
I sympathise with you re the migraines, I get a lot of them too.
There are a number of drugs that will help to bring the crohn's under control so try not to worry about the future you will be able to cope with all the help you will be getting.
Feel better soon
Hugs and best wishes
Trysha

 

[Jennifer]

Hi Neryo welcome to the forum!

I know its a lot to deal with just before you start college but at least you have the summer to try and figure out what meds to start out on before school starts. There are a lot of college students on the forum and a lot of threads about how to manage school and Crohn's. Try to not worry about it so much. I finished grad school a few years ago so I know it can be done.

If you're going to be living on your own, be sure you know where the local hospital is in case you need to go and find a GI specialist first thing for your area as it can take time to be seen by them. Don't wanna wait too long on that and wind up in a flare and have to wait a few months to be seen. I know you mentioned that you're glad the disease isn't life threatening but as with many diseases, if left untreated it can be so stay on top of your treatment (tests, meds and check ups). Be sure to tell you GI about the auras you're seeing or anything else like back or joint pain, fatigue, anything at all because Crohn's can cause a lot of problems. Have your vitamin levels checked as well to make sure you aren't low on any (its very common to be low because we don't absorb nutrients as well) and if you are there are supplements and shots/infusions for some.

With scopes they often give you an IV and give you something that relaxes you then give something called Versed which is supposed to make you forget the procedure. Be sure to tell them that you're nervous/how you feel and they should help make sure that you don't feel a thing.

 

[Neryo]

Thank you both for the support, it means a lot. I'll be sure to keep my doctor updated on all my weird symptoms. I know everything will be fine as we find the right treatment, its just really a bombardment of emotions right now quite honestly. I was already on an emotional rollar coaster with graduation and college coming up, now forget about it. One minute I feel like its not real, the next i feel hopeless, then the next I'm like I can deal with this! and so on. I just need to give myself some time to accept this for what it is. It just seems ironic in a very cruel way that someone who is as scared of medical problems and proceedures as i am to get a life altering disease at the age of 18. Hell, I used to get panic attacks if I just had a headache. I would run around thinking I was having a stroke or something lol. So I hope that being here on this forum will help me to see that I can get through this like countless others have.

 

[EthanPSU]

Hey Neryo, I was in your EZACT same boat. I was diagnosed my senior year of high school with college right around the corner. I was worried shitless. But I must say...I just graduated college and it was actually not that bad. I was on a lot of diff stuff throughout college like Prednisone, Asacol, Remicade. And most of the didn't work that well but I got through it. When you have a flare just slow down and let yourself heal. You are going to have a million distractions at college, so don't think this is the biggest.

Also, heres a great secret....

I was a heavy partyer and drinker at college but it comes with pain. Alcohal kills your stomach if you have crohns. The day after drinking the least of your worries will be a hangover. Just make sure you're near a bathroom that whole day. I could tell a hilarious story about a girl and that day over but I don't know if we need to be PG on here so ill hold off on it.

Anyways, It's gona be tough until its settled in, but don't worry because it does get ALOT better.

 

[<3kylewithCrohns]

My boyfriend Kyle has Crohn's and was diagnosed last June. He started school in August (where we met), and he had to learn how to deal with the flare ups and missing classes. He talked to the Student services about possibly getting registered with the Student Disability Services. They approved him and he had all of his teachers sign something from them say that he has a disease that may make him to miss classes and turn assignments in late. Most of his teachers were more then happy to give him extra time. I am so sorry that you are having to deal with all of this at a very exciting time in your life. You should be getting excited about graduation and then going off to college. But keep your head up and go into this new chapter in your life with a fighting spirit!!! Good luck!!!

 

[David]

Greetings and welcome!

First off, the drug (Propofol) they usually use to sedate you for a colonoscopy these days is GREAT. I don't do well with anesthesia either but had zero side effects to it and most feel the same.

Second, I suggest giving this thread a read, it might be of use to you

I wish you well!

 

[lucy101]

Im only a year younger than you and trust me i know what you feel like especially since its your last year of highschool and its supposed to be the best. It;ll be scary at first but you just have to stay stress free and focus on getting better. Also ive had 3 colonoscopies already and im only 17. I am terrified of anesthesia as well but you;ll eventually get over the fear. Stay strong and enjoy your last year but you know what helps the most, talking to your friends about this since they can cheer you up in every situation

 

[ThatsWhatSheSaid]

I was diagnosed in the fall during my freshmen year of college (I turned 18 in August and almost immediately had blood in my stool, being much like you-at least so it sounds-I assumed I had cancer). My primary care doctor kept insisting I was depressed and having a hard time dealing with the changes of going to college. I couldn't make him believe that I was actually LOVING school, but hating being fatigued, always feeling sick and in pain and losing a ton of weight. Anyway, I was a freshmen in 2004 and graduated right on time in 2008. It is definitely doable. Unfortunately, I did not have the assistance of the student disability thing, so some of my grades did suffer from absences etc. If that is available to you, I highly recommend you look into, even if you are feeling well when school starts.

Also, I understand the irony you are seeing in this situation. I have panic disorder pretty severely. I am terrified of needles and get faint just walking into a hospital. So of course I end up with something that involves all of those things. Anyway, I have always read these forums but never participated. I'm kind of in a bad place now so I thought, what the hell?

Prednisone is my savior. I did not have any issues with auras or anything though, I would definitely place a call to your doctor just because often times diseases like this come hand in hand with other issues. And it's better to know for sure than to worry about 'if.'

College was the most amazing time, even with crohns. Like Ethan, I was a HUGE partier. Of course, most of college my crohns was pretty much under control so my only issue was the day after like he said. Now I have pretty much been flaring since I graduated, so I won't touch alcohol. But right after diagnosis, I started treatment and everything got well under control. I hope the same happens for you.

Just take care of yourself and ride the wave.