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Posted 3/28/2006 8:30 PM (GMT 0)
I am wondering if anyone out there has had a immediate family member with one autoimmune disease and diagnosed with another yourself? My 14 yr old daughter was diagnosed with Crohns 2 years ago and at the time the medical staff took a family history of her and we had no family with anything close and we were told that it can be hereditary. Well, about 2 months ago I was diagnosed with RA and I am reading alot between the arthritis and crohns forums that people actually have both diseases themselves, and thinking now that the genetic link to my daughters crohns could be with me. I am just curious if anyone else out there has a similar situation and/or any information to share on the subject.
Posted 3/28/2006 11:30 PM (GMT 0)
Kathy HI,We are glade to have you and I will do my best to answer your question's for you.Please for give me had scop today and the goody's have not wore off yet.

OK it is not uncommon what's so ever to have more than on autoimmune disease and according to the sincer's one out of every five people have an autoimmune disease.

I will say this I have crohns,ra,oa,Sejeren's and I also have Ankylosing Spondylitis to boot.Lucky me .

Now my Dad has RA and he was about 55 year's old when he found out he also carry's a gene called HLA-B27 I carry it as well.

We were just like you trying to fiquer out where in the world my cronh's came from.There is no one that has documation for the crohn's part and we have come to the conclusion that my great great grandmother had crohn's on my mother's side.

If you have any more question's please let me know and I will try my best to answer your question's the best I can.
Posted 3/29/2006 2:00 AM (GMT 0)
Hey Kathy and welcome to healing well.. Yes, AI diseases are hereditary.. Curley gave you lots of good info there... Erin will be along shortly to give you an indepth run down. She is our resident nurse and is a wealth of knowledge... hang in there and we'll try to answer all you questions as much as we can.. Duck
Posted 3/29/2006 3:12 AM (GMT 0)
Dear Kathy,

First I am sorry about the diagnosis' on both your parts.  Neither disease is pleasant.  There is a very strong connection regarding Crohns and RA.  You'll see that many people at the GI's office have Crohns and Crohns related arthritis plus perhaps RA.  And at the rheumatologist's there will be many peole who have RA and Crohns!  Once an autoimmune disease is present, there poses a risk to develop another.

 

I started showing signs of RA at age 15 , 16. I always had abdominal pain, as early as 10 and 11 years old. 

Diagnosed with the RA officially in 1997...but not treated for it until 2002. Docs in my hospitals said it would most likely be genetic and i would develop it later in life.  Sadly it plummeted out of control. Aggressive treatment for RA just started to take place in middle 2004.

Bloody BMs and diarrhea I attributed to all the pills I was on....until I dropped 25 pounds off of a 110 body! So that scared me enough to seek a GI and colonoscopy:BINGO! a nasty Crohns on top of RA.  And all my docs say there is a strong correlation of both.

 

My father's side has RA cases as does my mom's too.  My mother's side has the colitis and crohns problems as well as colon CA. Genetic tendencies may play a part...the risk is there at least.

But do NOT blame yourself or feel guilty.  Be aggressive and persistant and vigilant of progress of symptoms.  Early treatment is BEST for RA and for Crohns...it can pave the way of an entire life and decrease the risk of disibility and complications.

 

Good thoughts and prayers are with you always.

Sincerely,

Erin

Posted 3/30/2006 7:01 PM (GMT 0)
Thanks for all the info, just trying to make some sense of it all. I have found this is a great place for support, information and help. You are all wonderful people
Posted 3/30/2006 7:55 PM (GMT 0)
Dear Kathy,

If your daughter ever wants to post here...let her know that I'm a young person dealing with Crohns as well! I remember still when I was 14 (11 years ago, but still fresh in the mind!). Every day there's the challenge of making sense of it all, and there will be a lifetime of it too, I think we all feel that way. Learn as we go.

Also, if she ever needs to vent or question about life issues with Crohns like school, highschool, college, BOYS! whatever...always here.  It's hard enough being 14...but throw a disease on top, even harder....but she'll have knowledge and character beyond her years from living with CD.

By the way Kathy, are you on any injectables for the RA yet? Is this case an early one? or do you think the RA went undiagnosed for a while?

The very best to you.

Take good care.

Erin 

Posted 4/3/2006 11:46 PM (GMT 0)
Hi Erin,
I will tell my daughter. I think it helps tremendously when someone can relate to what you are going thru. She has been on & off steroids so many times that she is having a difficult time with her weight. Thats the most difficult outward signs of her struggles. No more steroids after this round she is coming off now. If she doesnt stay feeling well then she will start on remicade treatment. I dont know if or how that can be worse than steroids. As for me I am newly diagnosed with RA, and just had surgery for ulnar nerve entrapment in my rt elbow two wks ago. So I havent had much of achance to start meds. Dr put me on piroxicam but I had to stop taking it due to surgery. He seems to think it is a milder onset, Doesnt feel like it to me!! I dont think I have had it long maybe since last december thats when the symptoms started. Thanks for all the info and support Finding this sight has been a Godsend to me. So helpful to here from real people that are living with (sadly) what we are.
Take Care,
Kathy
Posted 4/4/2006 1:43 AM (GMT 0)
hey Kathy,

yep, steroids are the WORST.  it's bad enough having to physically feel terrible with pain from Crohns and CD related arthritis (and RA too) and all it's complications; but having the effects from steroids puts the icing on the cake.  it's terrible how it makes you feel and look. 

the weight fluctuations are horrendous!  but it's uncontrollable...all water retention, so let her know "I Feel YOUR PAIN hon!" I wanna throw myself in the BBQ sometimes when i feel like a stuffed sausage! LOL.  but it will go away in time.  in time, things will get better.  now...adult acne is the PITSS!!!  and this is funny:  i told my GI and rheummy that i really can do without shaving my chin please!  so yeah, the steroids make a lady feel oh so glamorous. tongue even though much of my swelling has gone down, i still do not even want to look in the mirror. but it is a lifesaver!  and finding a sense of humor about it helps immensely.  i think though, no matter what age a woman is...it's all still kinda the same, the insecurities and all.

Remicade though, i believe edema is not an issue. many people have great success with Remicade for Crohns. some even after the 1st or 2nd treatment. and unlike steroids, the Remicade actually gets to the problem rather than just controlling symptoms. honestly, i feel Remicade would bring a better quality of life and remission for her CD.

ooh, the ulnar drift issue is like hallmark for RA. wow, how do you feel now?  any complications from the surgery?  i sure wish you a speedy recovery.

you know...it's kinda good that the 2 of you have each other...you probably share similar issues and trials and all.

hang in there gals.

sincerely,

erin

Posted 4/5/2006 5:40 PM (GMT 0)
Hey Erin, I am so glad you say there is an association with ulnar & RA. It all happened to me at the same time. My surgeon said he believes there is a correlation there, but thats all he'd say. I am recovering well PT 3 times a week and of course it is my right arm/hand that was affected and I am right handed. Although I feel like a one armed lefty after 3 weeks of this. I just want to thank you again for all your input regarding my daughter and me. I cant say enough how helpful you and others have been here. Just reading about what others have dealt with makes me feel less alone. I am so sorry to hear of all your illness & troubles, just please remember when you are down, that you are doing such a wonderful thing by using what you have gone thru to help so many others out there. I am going to show my daughter everything you wrote and tell her to feel free to ask you any questions.
I will keep you in my prayers,
Kathy
Posted 4/5/2006 6:50 PM (GMT 0)
Thank you Kathy,

That means a lot to me, really it does.

Oh, and  an "Ulnar Drift" is a very characteristic hallmark of RA. Not only is it a process of RA, rheummy's also use it as a diagnostic criteria for RA as well.

Anytime....always around.  I'm so glad that HealingWell and everyone hear has been of value to you.

 

The very best to you and your daughter.

Sincerely,

Erin :-)

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