New to meeting ppl like me

[Diamondinside]

Hi, I am 21 and I have been diagnosed with Crohns for over 11 yrs now. I have never really met or spoken with anyone who has Crohns before, and definitely not with anyone who's around my age. Although I have a pretty severe case in the fact that its spread so thoroughly, I have always done a great job at managing it... until recently. I thought I had this all figured out but this last yr I have been struggling. My problem: I have all the physical pain and swelling but my insides and blood work "Look Great!". So, I am literally stuck in a stand-point where I have no answers from anyone. I know this isn't my normal pain, but I don't know what else to do..... I used to run everyday and be extremely active but for the past 2 months I have taken pain medication every day, and I have never had to do that before.

 

[EthanPSU]

Hey diamond, nice to see younger people coming on the site. This place is great to talk to people that have the same condition. I don't know of anyone outside of this site that has crohns. I was diagnosed 5 years ago, so you have a bit on me.

I'm in the same boat as you at a younger age trying to live a normal life and deal with crohns and it is hard with friends wanting to hang out and all. Currently i'm in between treatments so not doing so well either, but hopefully that'll change for the both of us.

Anyways, welcome to the forums, if you have any question, just ask!

 

[David]

Hi there and welcome! I'm so sorry to hear you're having so much trouble Would you be game to answer some questions? Someone here might have some insight:

1. Where specifically is the pain?
2. What medications are you on?
3. What tests have you had to evaluate what's going on?

Again, welcome!

 

[FriendoftheKiwis]

Hey there!

I am definitely sorry to hear about your pain. :[[ I got diagnosed with UC when I was in hs. 21 now and suffering through a relapse. I also used to run everyday, go to the track, it was my escape from the world where I could just be me. I used to love it. Everyday on the track. Now, I can hardly walk let alone have time to run or go to the track. It sucks. I know. I hate it.

Hopefully you will start to feel better though. I can also understand how it appears you are doing well but really aren't. I just got back from the ER, they were pretty much no help except for some vicodin...I still am waiting to see my GI.

Anyways, I'm glad your on the forum. Sounds like we have a lot in common, which is great since I don't know anyone with UC or Chron's. Hope you feel better soon!! :]
[I'm from northern cali too! -bay area woo woo]

 

[Angrybird]

Hello and welcome to the forum, I am sorry to hear you are not feeling so well at the moment. I was also wondering where you are getting the pain and what is your current treatment regime? Fingers crossed we may be able to point you in the right direction of what is going on.

AB
xx

 

[Diamondinside]

The pain is across my lower abdomen and its really intense. Usually my pain is really sharp but this is different. Idk if anyone can relate to this description but I literally feel like my intestines are swollen. And my stomach appears swollen.
Currently the only medications I am on are predisone and ultram.
And last week I had a lower GI where the dr said everything looks fine.

 

[David]

If everything looks fine, I wonder about the possibility of Small Intestine Bacterial Overgrowth.

Were you having these symptoms when you GI saw you last?

 

[Diamondinside]

FriendoftheKiwis
Thanks! And its so reassuring to hear something so similar to what I'm going through but I'm sorry you are! I cant believe how many ppl suffer with this and how many are so young but I'm really happy to have found the forum and having so many ppl to relate to for once.
Where at in the Bay Area? I grew up in Antioch

 

[Diamondinside]

David
I am only on predisone and ultram for pain. I was stuck on the predisone about two months ago after I spent a few days in the hospital. They had tried putting me on Dipentum and the second day I was on it about 45 min after I took it I went into so much pain it was making me sick, then the next morning same thing and I was going to the bathroom pure blood.But even with all this my blood work looked fine. And the drs dont believe its a reaction to the medication bc its not typical. I have not seen my dr sense before the lower GI and the follow up apt isn't until the end of July. I have Crohns in most of my smaller intestine and my esophagus though and my dr did not do an upper GI, so I was thinking he missed something.

 

[David]

Yeah, if your Crohn's Disease is known to be in the small intestines and they didn't evaluate disease activity there, that would leave me concerned as well.

They need to move up your appointment. Call and explain what you're experiencing.

 

[FriendoftheKiwis]

FriendoftheKiwis
Thanks! And its so reassuring to hear something so similar to what I'm going through but I'm sorry you are! I cant believe how many ppl suffer with this and how many are so young but I'm really happy to have found the forum and having so many ppl to relate to for once.
Where at in the Bay Area? I grew up in Antioch

This forum is a great place for support especially since most of us can relate to what you are going through and want to help. I hope your feeling better and get the help you need! Def try to move the apt up so you are seen soon. I am trying to do that as well since I don't have an apt with my GI in July either! Frustrating. Right now worrying about health is something I don't have time for.
I also was experiencing a LOT of blood when I went to the bathroom but the ER doctors said my blood work was fine which is hard to believe since I feel like i am losing so much.

And I grew up in Redwood City! Nice to have something in common other than pain! Though, I sure can relate to what your experiencing.