New here

[algae]

Hello. My name's Alexandra, I'm 22 and I was just diagnosed with Crohn's disease on 9-25-10. I was expecting to hear that I have IBS but not Crohn's.

I'll try to keep my story short, but I have a lot to mention.

I'm upset, confused, frustrated, anxious, worried, tired, and the list goes on.

I'm mostly upset because nobody I know can relate to me. Nobody understands my pain and frustration. My parents are also in a bit of a denial and pardon my bluntness, but it pisses me off.

I have always been sick since I was probably 12. I would go to the doctors constantly and he would always prescribe me antibiotics and send me on my way. Finally, when I was 19 my primary care physician, who I'm very disappointed with to this day for taking so long to point me in the right direction, advised me to go to an Ear, Nose and Throat doctor after countless throat and ear infections. Eventually I got my tonsils and adenoids taken out. One day I suddenly got a swollen lip out of no where, ended up in the ER, was prescribed steroids and benadryl, and was sent on my way. After a few weeks I had a follow up with my ENT (due to chronic ear "infections") and I was told I had angioedema aka Quincke's disease which causes swelling of tissues such as the eyes and lips. When I Googled this disease I remember seeing "Crohn's disease".

2 weeks ago I had god awful ear infections and I had lost so much blood when using the bathroom. I finally told my sister about my cramping and bloody stools because it was really starting to worry me. The next day I went to the doctors and my primary care physician immediately did a blood and stool test and told me I needed to see a gastroenterologist right away.


Here I am, 3 years later, experiencing excruciating pain and finally diagnosed with CD.

I suppose you can say I'm extremely bitter. But my frustration mostly comes from the lack of understanding from my friends and family. I feel alone.

Does anybody else have Quincke's disease?

Thanks for reading,
Alex

 

[Manzyb]

I don't have Quincke's disease, however before I was diagnosed I too had gotten a terrible swollen bottom lip and eye lids and then broke out in terrible hives.

I totally understand being frustrated and bitter. You'll find that it took many of us a long time to get a correct diagnosis and to get good treatment going for our illnesses. It took me about 2 or 3 years. they kept telling me it was IBS, or I was anorexic and all kind of crazy stuff until finally I had lose 40 pounds and could barely walk. I was diagnosed shortly after that.

Friends and family do have a hard time understand whats going on with you. It may just be a defense mechanism for them to think that you are okay and nothing is wrong with you. They don't want you to be sick. My dad was kind of like that, but I had really good support from my mom. My friends had no idea and really.. I kind of lost most of my friends. I was in highschool and people can be nasty.

It is completely normal to feel all of those things in one. You should really try to educate your parents about the disease. It might help them at least understand things that are happening to you.

I am glad you found this forum and hopefully you will find some comfort in knowing that you are not alone. We do understand what you are going through.

You can always PM me or friend me on FB if you have any questions, or just need a buddy. Stay strong!! It will get better!

 

[DustyKat]

Hi Alex and :welcome:

I'm so sorry to hear about what you have been put through and that you have no one close to turn to. You will not be alone here, although I don't know if anyone else has Quincke's disease you will find wonderful support and understanding here plus loads of members here that are around your age.

How did they diagnose your CD and where is it located? Did they commence any treatment?

Please stick around and browse through the forums and if you have any questions don't hesitate to ask. Good luck and keep us posted.

Welcome aboard!

Take care,
Dusty

 

[seaofdreams]

Welcome Alexandra.
I feel frustrated for you just reading your story!
You've found a place where it's safe for you to vent your frustration and it's full of people who can relate to what you're going through.
I'm 21 and was diagnosed at 20 so I know how hard it is to be told that you have your entire life ahead of you to deal with this disease. There are quite a few of us on here around our age that are always happy to chat and listen if you need

 

[Dexky]

Hi Alex, welcome!! I've never heard of Quinke's sorry!! You say it is responsible for your lip but do they think it is also responsible for your ears and throat? How long did you have the cramping and bloody stools before your dx??

Did you ever have ear tubes implanted? My oldest daughter had severe ear infections when she was 1-2 years old. She was a completely different child after the tubes!! She's 15 now and has never had another ear infection.

Sorry for all the questions!! Hope you stick around Alex!!