Very Scared..

[Britt31109]

When i was five I spent more time in the hospital than in school, I had frequent polyps and severe abd. pain. After no answers for a long time the symptoms subsided and everything just stopped. 15 years later I had a baby and everything came back full force. A year a half of testing came back with Crohn's. I have tried almost every medication out there with no help. I am only 20 and getting married this year, all of this sickness has caused me horrible anxiety and depression. About a month ago I went to the e.r. with tachicardia and it has happened several times since then. Now my digestive dr believes that I have carcinomia tumors. I am currently doing a 24 hour urine to test 5-HIAA levels for the tumors. I work at a hospital and not one of the nurses has dealt with this disease and Im scared. I live in Illinois and am looking for a doctor that has a lot of experience with great bedside manor. Please tell me someone knows something about a great dr, and these tumors.. I am so scared.

 

[Keona]

Hi Britt
I dont live in illinois and I dont have much to say about tumours however, I can say that I have felt really scared about what has been happening with my body.
I get really frustrated with doctors who tell people "they think..." knowing full well that it is normal for anyone to react with extreme fear and a re-evaluation of their life. The anxiety and depression are normal - makes me wonder why they dont do the tests FIRST and then when they KNOW ....then they tell you - that could avoid any needless worrying.
I hope you receive some answers soon and remember - there are a lot of people who recover from tumours. Congratulations on your engagement
Take care
Wendy

 

[Caleb9849]

Britt, I'm so sorry to hear about what you're going through. I don't live in Illinois either so I don't know any doctors, BUT there are a lot of sites out there, if you Google around for them, where doctors are reviewed/rated, not only on their knowledge/skill in their profession but on how well they personally interact with their patients, which in my opinion is just as important. You could start by looking at this one that I found:

Okay, it won't let me post the link because I haven't made 15 posts or more. I love the people here but the forum itself has just lost a few of its cool points in my book. Well, put in "reviews of gastroenterologists in illinois" without the quotes, and click the one at "avvo.com" which is the 5th one down when I search, and that will take you to the site I'm talking about.

You can narrow it down by city, and it arranges them by "Avvo" rating...granted, this isn't an average of patient reviews (AFAIK) but who knows, "Avvo" may be really good at rating doctors. It's at least worth a look, I think

 

[Britt31109]

Thank you for your understanding. With Crohn's I feel as if this is the only place that I can really have people that understand what is going on. Honestly who wants to hear my stomach hurts a million times a week and how many BM's I have. Im lucky I work at a hospital because the fellow nurses have seen and heard it all, but I just wanted to thank you all for being here too. I do appreicate it

 

[archie]

hi britt you sound like your having a hard time and hopefully you'll get some answers soon. I've just had a small bowel resection and the pathology report showed I had a carcinoid tumour in the appendix. It hadn't shown up on any scans so it was a complete surprise to me. It was very small and insignificant apparently and now that it has been removed there is no further treatment or investigation. Keep on their backs until you get all the answers. I was told that they are very slow growing and if I hadn't had the surgery I would be none the wiser. They did say it wasn't related to the crohns though.

 

[Guest]

Okay, it won't let me post the link because I haven't made 15 posts or more. I love the people here but the forum itself has just lost a few of its cool points in my book.

hi Caleb, sorry you weren't able to post the link due to your post count not reaching 15.... we have this in place to stop spammers littering the board with umpteen spam posts - but, as we've more or less got a spam-proof registration system now, i'm going to put this issue up for discussion with the other staff - so that rule may be relaxed somewhat, shortly.

just as a reminder though, anyone who has any suggestions or complaints about the forum, please post it in Site Suggestions - that will ensure that the issue gets noticed by staff. i only found Caleb's post by accident.... thanks

 

[CDDad]

Hi Britt,
I'm so sorry about your current situation. If I were you, I would head to a top hospital.
Here is the list according to US News...:
http://health.usnews.com/best-hospitals/rankings/digestive-disorders

University of Chicago Medical Center is #6 on the list for Gastroenterology, very impressive ranking and that would be my first stop for your location. They are also ranked #15 for cancer, very good when you consider the hundreds of hospitals that don't even make any list.

Best of luck to you. One thing I have learned in my 20+ year Crohns journey is that you have to be your own best advocate. Make the calls, do the research, be a "nice" minor pest. The docs are busy and will not call you.

 

[ameslouise]

Hi Britt- Just wondering how you were doing and if you have any updated news for us? Hang in there!

- Amy