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Recently diagnosed and need to talk to others...


Sun, June 10, 2012 5:58 PM

For the past 2 months I have been having horrible discomfort and pain. I finally went to the ER after 2 months of my Fiance' begging for me to go I gave in and went. When I was at the hospital they gave me a diagnosis that I had an abnormal ovary and need to contact my ob.. My ob then told me it had nothing to do with my ovaries and my ovaries were perfect, he read me my chart which it said it was IBD, he then told me to contact my prim. doc in which I did and my primary confirmed my condition of IBD, I havent yet seen an GI yet that appt's in 3 months so I have yet to figure out if its colitis or crohns. What upsets me most is the ER doctor told me the wrong diagnosis, did he even know what he was saying or doing to me? Felt like he was just pushing me out of the ER so there could be an "AVALIABLE" bed for someone else. My problem was something I needed to know, not something to push me away from. Im depressed and sad. Been tryin to convience a child with my fiance for the past 2 months and its been hard. Ive been reading up on this disease and pregnancy, having IBD sucks!!! I never knew me, someone who eats as healthy as I do, have IBD. I can't figure out in my family who has and where I had gotten it from. My grandmother would have known but unfortanly she has past so I can't ask her. This is depressing and I need people to talk to, I dont know what foods to eat and what not to eat because I havent seen a specialist, I just need help and advice can anyone help?

FPO mommaj09
Joined Jun 10, 2012

Sat, June 30, 2012 12:38 PM

 Reply posted for mommaj09.

bekahwalsh@comcast.net 

FPO godsaves
Joined Jun 29, 2012

Wed, June 27, 2012 10:08 PM

 Reply posted for mommaj09.

whoops, hit the wrong button. Anyways, it will become your life, your normalcy. And eventually, like I said, will be something that you can laugh about, albeit your disease is under control. So yes, its very hard sometimes, but other times this disease I believe brings an interesting new perspective on life. 

FPO altman282
Joined Feb 21, 2012

Wed, June 27, 2012 10:05 PM

 Reply posted for mommaj09.

I feel as long as you set your mind to getting better, you will (eventually). I truly think it's all what you make it. It's not a fun disease at all, but you can do it. I have lived this way ever since I was diagnosed. Even had a big smile plastered on my face going in for surgery. Although, that's just the kind of person I am. I'm not about to let this disease bring me down and take over my life. Remember, you have Crohn's disease, Crohn's disease doesn't have you. You need to sit down with your friends and address any questions they have. Your friends are people that you should feel comfortable around and be supported by. If they are going to feel uncomfortable around you because you may need to rush to the bathroom, you might as well say goodbye because that's probably not going to change anytime soon. If you feel uncomfortable, then I guess its something that talking to them would help as well. Believe me, all of my friends know about my pooping habits. Its something that will eventually be a good joke

FPO altman282
Joined Feb 21, 2012

Wed, June 27, 2012 5:26 PM

 Reply posted for mommaj09.

Well I was finally given a diagnoses and I have Crohns. Im scared and nervous. Im scared that this disease will take over my life and I wont be able to enjoy the many years to come with my son. I dont hang out with friends anymore due to the fact im embarrassed i will have a bad reaction and be in the bathroom for hours. My son is now 3 and i now have to think does he have what I have. He doesnt complain of his tummy hurting or being in the bathroom for a long time. I just hope it doesnt hit him, I hope it doesnt hit anyone in my family, having this disease is my enemy and I will defeat my enemy regardless how long it takes, until then I hope I can stay strong and live my life to the fullest.  

FPO mommaj09
Joined Jun 10, 2012

Wed, June 27, 2012 4:31 AM

Hi,

I read your story and really feel for you and your current situation, i.e. being recently diagnosed yet not being able to see a specialist for 3 months.  I have had IBD since I was 8, more than 40 years.  My first suggestion is to talk very straight forward with your current doc and demand that he/she find a GI Specialist for you to see soon...3 months is too long to wait.

There are many new treatments that within 3 months could, I say could, put your illness in remission or at the very least provide you with some relief from your symptoms.  If your doctor does not know of a specialist in your area who will see you sooner than 3 months, try contacting your local Chron's Colitis Foundation office; there is one in every state now, I believe, and they have referral lists.

When it comes to the ER you are going to find some hospitals that have very knowledgeable staff in regards to IBD and others that do not.  The job of the ER is to diagnose, treat acute symptoms and stabalize the patient.  It is then pertinent for us, the patient, to follow through with a specialist. 

It is wonderful that you are engaged and your fiance is so supportive.  I am a father of a 9 year old, who was born the day after my 42nd birthday...I did not marry until I was almost 39, but led a very active social and athletic life until the last couple of years.  The last thing I want to do is advise you and your fiance on when to have kids, but without knowing any more about you or your still newly diagnosed illness, I would strongly urge the two of you to think and talk about getting your IBD treated by a specialist prior to trying to have a child.  Trust me, you need all your strength and energy as a new parent.  Therefore, having a child with your untreated IBD could prove to be very difficult on you and your beloved; just something to think about.

Good luck and please do not hesitate to contact me with questions/concerns

FPO hsaltman
Joined Jun 27, 2012

Thu, June 14, 2012 3:57 AM

 Reply posted for mommaj09.

Its very hard to deal with all of this stuff.  I have been lucky with ER doctors most of the time after I went to a new hospital, but specialist's have been a struggle for me to find who care and have time.  I have a family history of crohn's but was doing very well to take care of myself and staying healthy.  After my first two surgeries two years ago I have been taking care of myself so well, however still got sick again, not with crohn's but complications from crohn's.  I'm not sharing this to discourage you really, but its very hard.  Reach out to people around you if you can, if there is a support group near you try to get connected.  Also I have been in counseling about this issue for a while now to talk about all the stresses cause it seems to help some.  
if you want to email me feel free. meg19862@gmail.com

FPO megan2010
Joined Jan 11, 2011

Sun, June 10, 2012 7:05 PM

I can share your sentiment with ER's. I've been to many during my time with crohn's disease. When I was diagnosed 10 years ago. The first few ER's I went to simply assumed I was having stomach spasms or ulcer's and put me on a high fiber diet which would have killed me as I'm supposed to have as low fiber as possible to avoid the pain. Most ER's are unfamiliar with crohn's disease and are only to treat the symptoms you come in with, and not the condition. If I don't go to a teaching hospital ER i'm usually just discharged with some basic meds. That or they look at me crazy like why are you here, there's nothing we can do for you go see your specialist. I recently went thorough 3 ER's before biting the bullet and going back to Shand's. With a diagnosis of my first flare up in 10 years (to the date of my surgery) or full blown Crohns coming back.

Emotionally it doesn't get any easier, I have a daughter whose turning four soon. Everyday the thought of her contracting what I have preys heavily on my mind. I too looked back in my family tree and could find no one who had it. However some that did could be so far back in your family tree that they didn't know what the disease was or it was wrongly diagnosed.

If you ever need to talk my email is *Casanova1121@yahoo.com*

FPO hotshot1121
Joined Mar 15, 2012

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