Mom has Cd , Now i have been told at 43 I have CD

[Maisydaze]

Hi ,

I had orginally became a memeber to help me understand what my Mom goes thru with her CD and see if there were any other treatment that could benefit her . She has a severe case , multi surgeies and an open wound for 7 years now .

But now I have been told that I have CD , just starting the test and meds . They found erosin in my terminal ileum but biopsy came back inconclusive , so they sent blood work out ( Promethus IBD Marker ) that came back postive for Crohns . Have Cat scan this week and just started out on pentasa 500 mg that cost me 761.00 for a 40 day supply .

It does explain alot of my symptoms , just never thought I would be here

Confused right now



Thanks
Jenn

 

[Earnellzwifey]

Oh I am so sorry to hear that you and your mom is suffering with this horrible disease. I hope and your mom start feeling better soon. I also hope you don't suffer as much as your mom has, poor thing.

 

[Maisydaze]

Thank you Earnellzwifey , my mom has had this for as long as i can remember . As a child she was in so much pain . Last year she had another surgery at the age of 69 and her Dr told me he does not understand how she is alive with how messed up she is inside .

Now with my Recent diagnosis of Crohns I am just crossing my fingers ......

 

[silvermander]

As horrible as it all is, I have to say that I understand my mother so much better than I might otherwise because we both have Crohn's. We were both diagnosed at very young ages, but it's the understanding of what each other are going through that means so much. I can simply sigh some days and she knows exactly how I feel, and me her. Good luck, but hold close to each other, it will help.

 

[David]

Hi Jenn. Ugh, I'm so sorry to hear you have Crohn's now too

Is the only medication they're putting you on Pentasa? Or are they waiting for the results of the other tests before they determine additional treatments?

We're here to help in any way we can.

All my best to you.

 

[Maisydaze]

Thank you David , as of now just the pentasa and tomorrow I have a CAT scan with contrast . I did just get results of a test I have not heard about called a C-Reactive Protein (CRP) and it was a 9.1 so going to do some research on that one .

 

[David]

Pentasa definitely helps some, but the data for its use in Crohn's disease isn't that great. Considering how much it is costing you, you may want to discuss other treatment options with your GI that are not only more efficacious but should cost you less as well. There's a variety listed under our treatment section.

 

[Maisydaze]

Thanks I will go look at that , i feel the more knowledge I can get the better off i will be . It is just awesome to have this as a resource , so glad I found you all . Take care and again many thanks

 

[David]

I agree with you 100%. Learning about Crohn's disease and everything that goes along with it is a steep slope and takes time. But I strongly believe that the more you educate yourself, the more you can advocate for yourself and the better off you'll be in the long run. Ask as many questions as you have, don't be shy. As a community, our knowledge is collectively pretty darn good

 

[Maisydaze]

I did get a copy of my Prometheus IBD sgi Diagnostic , if anyone understands these and can shed some light that would be awesome

Or a website that explains this test


result Reference
ASCA igA ELISA 17.3 < 8.5
ASCA igG ELISA. 6.3 < 17.8
Anti- Ompc IgA 14.9 < 10.9
Anti-CBir1 IgG. 7.5 <78.4
Anti-A4-Fla2 IgG. 9.3. <44.8

AutoAntibody ELISA. 20.5 <19.8
IFA Peninuclear pattern not detected not detected
DNA se Sensitivity not detected not detected

Inflammation results
Assay. Result. Reference

ICAM-1 .38 <.54
VCAM-1. .38 <.68
VEGF. 1291 <345
Crp. 9.3 <13.2
SAA. 4.5 < 10.9



Only one Mutation Detected
STAT3

 

[David]

It doesn't look like that test will be too much help but I'll be curious what your doctor days.

Here is a version that is consistent with Crohn's.
Here is a version that is consistent with Ulcerative Colitis.
Here is a version where there is no pattern for IBD.

As you can see, you don't really fit any of them.

Our wiki entry explains a lot of what these tests are.

 

[Maisydaze]

Thanks again David .To be honest I am not sure exactlly what he said that night when he called me .here's were i am at . Been having D for 3 years now will every so often have a solid one . cramps are so painful right before going and sometimes It is a rush to het there . Always feeling nausea before and after I eat just on going .... I have an tiny erosion in my terminal ileum with patchy stuff , mild diverticulosis, biopsy for my terminal ileum came back negative , but my Promethues ibd sgi test can back marked for Crohn's .

So he put me on Pentasa 500 cr 2 caps 3 times a day , and i go back and see him in November.

I have kaiser and as of right now Crohns is not listed in my medical record .

I think he is going of the Promethues lab test the symptoms and my family history .

 

[Kip1]

Hi Maisydaze
My Mum is 58 now & has had crohns since she was 17. I found out last year after being ill for years that I also have crohns. I am 40 now & had a TI resection in July.
My worry is for my daughters now.

 

[Maisydaze]

Oh Kip1 i am very sorry to hear this ! Best wish's to you and your Mom and Daughter .

 

[Maisydaze]

Hi David , i need to apologize as with all this new info and stress , now i am not reading very well either .

On the gentics results all have mutation detected , ugh dont know if that makes a difference or not .

Wish i could just upload a picture of the test results

 

[David]

It does indeed make a difference and is a big part of why it came back positive for Crohn's. I was confused there for a bit but it makes much more sense now