New to Crohn's Disease

[skirv710]

So all through middle school I had problems with acid reflux. I was put on Ranitidine, but I continued to have acid reflux all the way through high school. Last summer (Between my senior year of high school and freshman year of college) my ped. GI told me that I had to go through some tests to see why I was still having problems. Within two months I had two endoscopes, one colonoscopy, my blood drawn numerous times, stool tests, and the pillcam. What a busy two months! After the endoscopes and colonoscopy, my doctor told me I do not have Crohn's, but I needed the pill cam so he could look at what a portion of my small intestine looked like (he couldn't see everything with the scopes)..... The pillcam was an easy process and when I went to the doctor to see my results, my doctor me with Crohn's. At that point, I had no idea what Crohn's was. The doctor gave me pamphlets and put me on Lialda, that was about it. I went home, told my parents (they were really upset) and then I went on with getting ready to start college.

My school is on trimesters, so it is crucial to go to class if you can. But during week 9 (out of 10 weeks) I had to miss all of my classes because of my first flare-up. I woke up on a Monday, with terrible gas and diarrhea. I was embarrassed to tell anyone, so I just acted like nothing was wrong. I went to my first class of the day- BIG mistake. I tried to act like nothing was happening whle my stomach made loud noises but 15min into class, I had to rush to the bathroom. After staying there for 15min I called my mom because I was so scared. She told me to leave class and go back to my room to sleep. Even though she was at work, she called my doctor because she didn't know what was going on either. Later she called me and told me I was having a flare-up... Blehhh. The doctor put me on lovely prednisone on Wednesday, but it didn't seem to work quick enough. So throughout that week I was continuously talking to my doctor, many times at 2:30 in the morning.... I couldn't help it, I was SCARED. My body has never gone through anything like that before, so I didn't know if anything was serious enough to go to the hospital- I was becoming dehydrated. So that Friday my doctor told me to go back home (2 and a half hours away) so I could be hooked up to an I.V. I went home, but the next day, the prednisone seemed to kick-in. My symptoms got better, and I was able to have privacy in my own home. The next Sunday I went back to school, and was able to catch up on my school work- THANK GOD.

Now I'm still learning about Crohn's, and it is hard to talk to my friends at school about this, because they don't really understand. It stinks that if you don't LOOK sick, people don't think you are sick. It also doesn't help that not many people know about Crohn's. I am very uncomfortable to be around people, especially in my room. It's hard having a roommate- and it doesn't help that I got a social butterfly who likes having people in the room all the time. I also HATE these community bathrooms.

I try to be positive about this though. Stressing about it only makes it worse. My parents have been great to talk about this to and can make me laugh about it altogether. If anyone has advice about being in college with Crohn's, that would be awesome! I've never used a forum before, but I'm hoping it will help to talk to other people who have the same thing as me

 

[CeeCeeGo]

Hello and welcome to this forum. I hope that you find the forum supportive - I have. There are some great people on here who have a lot of experience of IBD.
Try to work on your stress - I started therapy a few weeks ago and it is really helping - even some deep breathing can help!
You will always find someone to talk to on this forum, so stick with it.
Take care.
Carol

 

[David]

Greetings and welcome to the community. I'm glad you joined and thank you for sharing your story.

The bad new is, you're on the wrong medication. I say that because it was the pillcam that diagnosed you. That tells me that your inflammation is primarily somewhere between your duodenum (the first part of your small intestine) and your terminal ileum (the last part of your small intestine). The problem is, not only is Lialda a form of mesalamine that is formulated to treat inflammation in your LARGE intestine, it works very poorly for Crohn's disease and isn't even approved for its use.

You need to get on the correct medication. I might also get a second opinion from a gastroenterologist who is a little more experienced with Crohn's disease and how to properly manage it.

Sorry, I know this isn't what you wanted to hear.

We're here for you.

 

[xmdmom]

My son was diagnosed last spring after his freshman year. Since diagnosis, he has got accommodations from his college disability office. This includes having a single room. He also gives a letter to each teacher at the beginning of the semester from the disabilities office. This smooths the way if he needs to miss classes or have extensions for work because of illness. I would definitely contacting the disability office at your college to let them know you have Crohn's and find out about how to apply for accommodations. Sometimes they even have rooms with their own bathrooms. He took a lighter load of classes last semester to try to avoid too much stress. This semester he has chosen a difficult load and we'll see how that goes. Avoiding sleep deprivation and alcohol are helpful.

Best wishes and hope you feel well soon!

 

[LindaS]

I was diagnosed in college, and it was hard to find friends who understood what I was going through. The people here are so helpful and welcoming.

I missed a final exam due to being in the hospital. But because my professor knew I was sick (I told him in the beginning of the semester) and I had gotten As on all my tests, he waived it for me. It might be a good idea to let your professors know up front what you're going through, not because you want any special treatment, but so they understand if you miss class, you're not goofing off.

 

[persephone300]

...biggest advice I can give, is for years, I was too embarrased to have admit to people I had problems, and even once diagnosed, hated talking about it. I'd have panic attacks, and wouldn't be able to tell people, and Drs say the worst thing about a panic attack is trying to appear "normal" whilst having one - which I did, and was exhausting.

Best advice I can give, is be as open as possible with as many people as possible - the more it is "out there", the ore comfortable I feel being around people who know I have a problem - even if they don't fully understand it. Keeping it all under the surface caused me more stress

 

[skirv710]

Greetings and welcome to the community. I'm glad you joined and thank you for sharing your story.

The bad new is, you're on the wrong medication. I say that because it was the pillcam that diagnosed you. That tells me that your inflammation is primarily somewhere between your duodenum (the first part of your small intestine) and your terminal ileum (the last part of your small intestine). The problem is, not only is Lialda a form of mesalamine that is formulated to treat inflammation in your LARGE intestine, it works very poorly for Crohn's disease and isn't even approved for its use.

You need to get on the correct medication. I might also get a second opinion from a gastroenterologist who is a little more experienced with Crohn's disease and how to properly manage it.

Sorry, I know this isn't what you wanted to hear.

We're here for you.

It's wierd you say that because I actually switched to an adult GI a few months ago, after my flare-up and he just increased the amount of Lialda I take every day. I'll ask my doctor about that. Thanks!

 

[David]

So that you can educate and advocate for yourself with reputable data and information:

1. Here's the prescribing information for Lialda. It doesn't even begin to be released until your digestive system pH hits 6.8. For most people that means the terminal ileum is where the capsule begins releasing medication. So the vast majority of this medication is waving to your inflammation as it cruises on by on its way to your colon. And considering Crohn's disease is transmural (affects every layer of the intestine) and mesalamine is thought to act topically, what, if any, medication does hit the targeted area is putting a wet blanket over a coal mine fire.

2. Here's a Cochrane review discussing mesalamine (the active ingredient in Lialda) in Crohn's disease.

 

[skirv710]

Ok so I talked to my doctor and he said that Lialda starts breaking down at the end ofthe small intestine so it works for me! I also talked to a student at my college that has crohn's too and he also takes Lialda! Thank you for the help tho!