Worn Out!

[tots]

I was diagnosed 20 years ago with Crohns after a long long time of pain, diarrhea and vomiting. All the while working full time and raising 2 kids. I like most- dont want or have the time for what Crohns has to offer!

After moving to Texas and trying to establish with a new Dr he decided I never
had Crohns. Ok.... my family Dr treated me with the minor flares I had until last
month. Thats when I had pain (child birth was eaiser) and bloody diarrhea. I was
admitted through the ER. Had a colonoscopy Negative- biopsy-negative. Barium follow through showed narrowing in the ileocecal valve (same as the first time around ) Radiologist said Crohns dr said crohns. Started on Entocourt-Bentyl and Nexium.

Went in today for follow up. Dr wants to do the IBD 7 - to confirm because colonoscopy and bx was neg. I have read that IBD 7 is not no longer going to be used.

At the end of the day I am angry and frustrated and want to be treated for what I have. Do men have this hard a time getting diagnosed?

I guess I can just go sit in the ER and eat all the salad and cherrios I want! We can go from there!!

If anyone has any suggestions please send them my way!! :ywow:

 

[CLynn]

Tots, I am sooo sorry to hear about your dilemma, what a mess you have been thru. Now, keep in mind that I was diagnosed in 1988, but was told then and just read again recently that a tissue biopsy is the only sure way to know if the disease is Crohn's disease. Have you been to a G.I.?

 

[tots]

Yes I have! Thats who I have been dealing with for the most part!

 

[CLynn]

Wow! That stinks....wonder why they can't decide?

 

[Angrybird]

Hello tots and :welcome: Sorry to hear you are having a hard time with the GI, is there anyway you can get referred to see another one? Can your family doc perhaps help with this? Have you noticed any improvement with the above mentioned meds?

I am pleased you have joined the forum, there is a lot of help and support here which I hope you can benifit from xxx

 

[David]

Greetings and welcome

Where did you read that IBD 7 is not going to be used anymore?

On one hand I can respect that your doctor is wanting to be thorough and really nail down a diagnosis but on the other hand... well, what other causes does he suspect? And since it sounds like every other doctor says Crohn's, as Angrybird suggested, if you're not happy, you may want to seek a second opinion.

I wish you well. Please keep us updated!

 

[nevilletanner]

hi, i have just found out i have crohns, first of all the docters in A&E said it was this and then it was that, then a consultant decided on a CT SCAN .. that showed straight away what it was !!

 

[tots]

David- It is on the Cleveland Clinic Laboratories Wed page. Special Update from Nov 2011. That being said- I do not know alot about the Cleveland Clinic. All this is happening a little fast. I have not read alot of positive reviews on this test. It seems to give people a harder time getting treatmant with conflicting results. Have you had any experience with this kind of lab work? Its genetic and inflammatory testing. If you have been on steroids will that change the test? If they
dont know if this test is genetic how does this work??

 

[tots]

AngeryBird- I am getting better on the meds. My family Dr said sometimes you have to treat the symptoms and not all the paperwork. SBFL +for Crohns- WBC count has high indicating an inflammatory process- hematocrit and hemaglobin were low due to bleeding.

Will push through and get the right care- I have a job I love and my 17 year old son is playing baseball- cant miss his games!! Thank you for the advice!

Have you heard anything about the IBD7 blood test??

 

[Angrybird]

I haven't heard about that test, my tummy put on a really good show when I was first diagnosed so there was no doubt when my scope was done on what I had. I was 'lucky' in that sense I suppose.