Tough Times

[SunshineSmile]

Hello, I'm new on this forum. I have been dealing with stomach issues since I was 13 years old. I'm now 20 years old and still going to doctors and doing tests and no one knows what it is.
My symptoms are diarrhea, cramping, bloating, etc. Whenever I eat something I'm running to the bathroom whether it's during my meal or a few minutes after. I've been to the hospital many times for my pain, and no one knows what's going on.
My newest doctor is wonderful though. He was ruling out Crohn's disease but then realized that with my last Colonoscopy with my other doctor, he never checked my Terminal Ileum. He seemed concerned and thinks I may have Crohn's, and I think I will be doing another colonoscopy again soon. He found that in my small intestine my microvilli are really short instead of really long, and in my sigmoidoscopy I had a little bit of inflammation in my colon but biopsies returned and was normal. Also, my IgA level is pretty low.
Has anyone been in the same situation as me? What do you think?
I hope you all are doing well. Thanks for reading my story, I appreciate it.

 

[Dexky]

To answer your question...YES!! The Undiagnosed Club here...http://www.crohnsforum.com/showthread.php?t=13113 is very large!!

Good luck and welcome Sunshine!!

 

[SunshineSmile]

Thank you so much! I will check that out!

 

[Cat-a-Tonic]

Hi Sunshine, I just replied to your post in the Undiagnosed Club but I wanted to welcome you to the forum as well. I'm undiagnosed too but I haven't been ill for as long as you have - my symptoms first hit in Oct 2009 and I haven't been the same since! I already mentioned this in the other thread but your new doctor sounds wonderful and thorough, and that's pretty much half the battle right there. I hope you get some answers soon. There are quite a few of us on here who are undiagnosed and we understand what you're going through. You're not alone and we're here for you!

 

[allieinwonder]

Welcome to the forum! I know I have spoken to you on the undiagnosed club as well.

I have been undiagnosed since I was 15, so 6, almost 7 years now. I didn't get this bad until a year ago, and thats when my tests started. I am in the same boat as you, at first they really had no clue, so they labeled it as IBS, gave me antidepressants, and told me I would be in pain for the rest of my life and I would just have to learn how to deal with it. I continued to go to my GI month after month and slowly but surely we are back to Crohns due to two black out episodes, an ulcer that went through my tounge, and a sore on the corner of my mouth (which led to a blood test indicating my vitamin b was on the lower side of normal).

You are not alone! I hope your tests show exactly whats going on so that you can get on the road to recovery.

 

[SunshineSmile]

Yes, It feels so good to know that I'm not crazy when I say I'm having pain! Doctors always keep saying IBS and just start giving me meds just like with you Allie, but I know in my heart that it's something else. And this doctor is definitely finding things that all my other doctors never found, so I am trusting in him.

I'm thinking I'm getting a colonoscopy in a few weeks for them to check my terminal ileum for Crohn's or Ileitis, since no one has ever check my terminal ileum.

Allie- So, you are diagnosed with Crohn's or they just have a feeling it's Crohn's but haven't found the right proof? I don't have black outs. It must be really scary to deal with so I'm sorry you have those fainting spells. Are you going to do any tests soon?

Thanks again for the replies Cat and Allie, I really appreciate it.

 

[allieinwonder]

I'm not officially diagnosed with Crohns yet, but my GI believes I will be in time. Its been 8 months since my colonoscopy, and I have never had a pill cam, which looks at parts of your small intestine that the scope can't see. I was suppose to have one, but a few months back they changed their minds because they thought it wasn't worth the money when there was a small chance it would find something. Right now I am preparing to move back to the states for four months for school (I am an Army wife, we are stationed here in Germany), and my government healthcare is set up to be good at only military bases, and there are none near where I am going. So the plan for now is to start tests again once I get back in January. Then again, I see my GI next week, and he might have a different idea in mind, but we will see.

The IBS crap is probably the worst part about this whole process! I'm so glad that you found a doctor who is willing to not see you as someone who is fine, which is generally how they see IBS patients. Ever since they stuck the word IBS in my medical files it has haunted me for years. I've decided I am not telling any doctors that I was dxed with IBS so that they don't give up on me. Someone with IBS would not have to go on a liquid diet like I have for the past 5 days! >.<

 

[SunshineSmile]

Yeah I went to the hospital recently because of the pains I was getting and the doctor there told me that IBS is just a name they use too often in diagnosing patients if they don't know what's going on or they are lazy. Haha. She was funny. But I think you should get a pill cam done. My doctor said that he's going to do another colonoscopy and then if that's normal he's going to do a pill cam. He seemed to think that would show stuff that you normally cant see with a scope.

I totally understand how frustrating it is to have doctors not take you seriously because they rush to say IBS. Sometimes I don't think we get a fair chance to be heard.

How are you going to go to school? I am considering not going to school this upcoming semester because its hard to sit through 4 hour labs when I'm constantly running to the bathroom or just worrying about if my stomach is going to cooperate. I'm still deciding if I should go to classes this semester or not. I'm going for nursing so I have science labs as pre reqs. I need to get fixed before nursing school so I can get through 12 hour clinicals... Ugh sounds almost impossible with what's happening to my tummy.