Recent Diagnosis

[cheerio]

Hello All!
Glad I found my way here.....I have spent hours going over threads and am amazed, more informed and less lonely. Thank you.
I was diagnosed last month after several blood tests coming back with low iron and high CRP's. I did not have ANY symptoms and then after my colonoscopy, BAM! My Crohn's barged right on in. I am an American living in Germany so the way my doctor approaches things might be a bit different. He put me on Budenoside (9mg) for one month and I felt like a million bucks I went off last Thurs and by the afternoon I was living in the restroom.
I'll admit I am still in denial, who wants to embrace that life may now revolve more around my digestion than I ever wanted. Not to mention that I use food for comfort....it's a vicious cycle, people....vicious.
I'm sure you will see me around here from now on. A BIG thanks to whoever created this!
-Kelly

 

[Grumbletum]

Hey Kelly
I'm glad you found us too Sorry to hear your diagnosis. That must have been a real shock with no symptoms. So what's happening now? Have you got a doc appointment? It's quite common for symptoms to return when your tapering off steroids the first time. Did your doc mention a maintenance med when you have weaned off?

 

[mikeyarmo]

Welcome to the forum Kelly!

I am glad that you have already been able to benefit from the forum and hope you will continue to enjoy the forum and become an active contributor.

 

[allieinwonder]

Hello, and welcome to the forum!

I am also an american living in Germany!!! I live in Bamberg. Are you here with the US military also? If so where do you go to get treated? I have been driving 3.5 hours one way to Landstuhl hospital since I got here in October.

I have found that Germans treat IBD way differently that Americans. My first colonoscopy was with germans and their prep is much more severe than the US...I did the prepacol and the pills, and the bottle was pure mineral oil! YUCK! The US prep from landstuhl is much better in my opinion. Also German hospitals use different drugs, so the pain meds aren't as strong.

I am excited that another american in Germany is on the forum. This has been a unique experience!

 

[cheerio]

Helen- I go see him on Wed. I hope to go back on Budenoside- it really worked for me. I had an ultrasound last Wed and my inflammation (terminal ileum) went from 6mm to 4mm, with normal being 1-3mm. I'll be honest- I took the medicine he gave me and it worked so good that I just convinced myself that it was just a temporary thing and all was well. It is sinking in now...I have to accept this- I'm getting there. I'll ask him about maintenance

Allie- I'm in Stuttgart! Tricare sent me to a German Dr and I am pleased so far. The prep for my colonoscopy was awful. It was a lukewarm, orange scented (it did NOT taste like oranges!) thick, nastiest stuff I ever swallowed. By the morning I was not keeping it down, but the test went well (so glad I was asleep for that ) I had a MRI of my small intestine and an endoscopy. I have two inflammation points- my doudenum and terminal ileum. I hope you get some answers soon. Having a place like this to converse is also comforting. We head back to the States in Oct. 3 years has flown by! Glad to connect with you here!!!

 

[David]

Hi Kelly and a most hearty welcome to you! I'm pleased you found your way here and have found our community to be beneficial to you

As you have inflammation in your terminal ileum, IF your doctor has not discussed Vitamin B12 supplementation with you, I would suggest bringing it up with them. We wrote a short article that talks about this for our newsletter which you may want to check out.

Again, welcome!

*hugs*

 

[allieinwonder]

We have been here a year so far, and it has flown by as well! I was sent to a German GI as well, but just for a colonoscopy, and he refused to talk to me about my situation (he just wanted to do the test and thats it). Then the clinic said I could either see another german GI or drive to Landstuhl... the drive seems to be worth the care I'm getting, well, at least to some degree! My case has been hard and complicated so the language barrier makes things very hard (I was hospitalized in April in a german hospital which was hard at times).

I agree with you...that prep..yuck! They must believe comfort is part of the test process. I have to prep tomorrow for a pill cam (spending the night at landstuhl in the hotel because of the long drive and early appt time) and I am so glad its an american prep!

 

[cheerio]

David- A HUGE thanks on mentioning the Vitamin B12. I get my first injection tomorrow! When I asked for it my doctor was surprised and his attitude towards me changed immediately when he realized I was not going to follow blindly and that I am a part of the decision process with my treatment.
Again, a BIG thanks!

 

[David]

That's fantastic! Good for you And you're very welcome. All my best to you and please keep us updated.

 

[scottmyster]

HI kelly, welcome to the forum. i have had crohn's for 21 years now was! in remission for 15 years and it just decided to flare up out of blue.I am currently taking predisone for awhile hopefully that will work. but, it's great that you here among this great family of people who have the same problem. and i wish you all the best with your recovery. best wishes

scott