Recently Diagnosed Crohn's

[Laura Dawn]

Hi! First of all, I am so happy to have found this support group. Unless you have fealt the pain and frustration of crohn’s, it is very hard to explain to people. I’ve been reading all day and feel like I am not alone. So many similar stories as mine. So thank you all!

My name is Laura, I was DX with Crohn’s in July of this year. In retrospect, I’m sure I’ve gone undiagnosed for years. I remember these pains back to when I was little. I was DX with IBS at least 25 years ago. Now, for the past 4 months I have been in the worst pain ever. I was always told I had an ovarian cyst, due to endometreosis. I went to the ER in July where they did a CT and found two things. One was crohn’s and the other was a ruptured cyst. I went to a new GI Dr. who did a colonoscopy and gave me a firm DX of crohn’s in my small intestine. He then ordered a test (capsulle test) where I would swallow a pill that takes picture of my intestine so that he can decide if he needs to remove the diseased portion. My insurance company denied the procedure and is insisting I have ANOTHER CT! It is a medical fact that it is bad to be exposed to that much radiation. Also, and endoscopy must be done first. I was on a course of steroids that made me have severe mood swings and I gained 8 pounds in a few week. I exercise 4-5 days a week normally. Now, I can barely leave and go 5 minutes away from my house as I need tobe close to the lou. I am sick and I am tired and the insurance company is trying to mandate my plan of care. I’m super frusterated.

My family, 15 year old twin boys and my husband as of Dec.( I am newly married) do not get it. They tell me to cheer up. It is hard to cheer up while I am in pain. Thanks for listening!

 

[Jennifer]

Hi and welcome to the forum!

Insurance companies really are the worst. My pill cam was denied as well because they said the test is used to diagnose Crohn's and since I was already diagnosed, I didn't need it. Had every other test done already. We were just trying to make sure I didn't have a stricture or anything else the other tests weren't showing since I was having some symptoms and had to keep bumping up my medication.

Glad you finally got a diagnosis and are starting to get it under control the best you can. So far there aren't any scientific studies done on the long term affects of CT scan radiation (because the machine is fairly new so they wont be able to study it for a while longer) but I do know that they can adjust the amount of radiation given so if you do go in for another one (I honestly don't know how many I've had or x-rays, I'm thinking Chernobyl standards) you can ask them to do it at a lower setting. You should be able to do the endoscopy no problem, no real prep for that plus its a regular test to be done along with a colonoscopy. Gotta jump through the stupid hoops to get to what you want. I hope that changes real soon though.

 

[Laura Dawn]

Thanks Crabby! I am an auditor in healthcare and can't get my procedures covered. Such is healthcare.

I am so tired of being in pain! I still exersise a ton, but bring extra clothes. Its so embaressing. Hoping to get a handle on it.

So glad to be a part of this forum. I was lost, alone and pissed! I feel better knowing I am in good company!

 

[723crossroads]

Dear Laura, Many of us here have gone through the same experiences with insurance companies. You have to follow their plan of what to have done next. But, don't get upset and lose hope, we are all here for you and will help you as much as we can. Noone can understand it until they have gone through it. Eventually you'll end up getting what you need and go into remission hopefully. But, in the meantime, keep talking and sharing with us. We care!!! :rosette2:

 

[Laura Dawn]

Thank you so much! I've taken to fighting my insurance which makes me feel worse. I already love the support here.

 

[annawato]

Welcome Laura, glad you found us. Your health care provider sounds terrible. We're fortunate in Australia not to have those problems that just make it all so much harder. As to your husband and Twins. It will take awhile for them to understand. I too have twins - they turn 21 at end of August. I've been dx since mid 90s (though have had it much longer) but its only been the last 5 years that the family has been truly more understanding and only after some major operations and long hospital stays - I think they finally realised it wasn't in my mind and that it is or can be a very serious disease. It makes it so much harder when family don't understand because not only do we have to deal with the pain and tiredness and hassles of the disease there can also be feelings of guilt that we are not meeting our roles as wives and mothers in the the way we would like. I hope your family quickly realise what you are going thru and that they need to take the time to care for you. You deserve it. All the best,

 

[agirl65]

Thank you so much! I've taken to fighting my insurance which makes me feel worse. I already love the support here.

Hey there, I'm so sorry you are going through all of this. I work in the medical field, so I know what you mean by the insurance co. making you feel worse. I hope this gets resolved for you quickly!

 

[Laura Dawn]

Thanks Agirl, I'm an internal auditor in healthcare and am nOt getting anywhere with them. That's pretty pathetic . I'm worried that while I wait for the auth for procedures, I am just getting worse. Ugh!

 

[KatyBuckeye]

Hi Laura- I'm sorry to hear about your diagnosis, but I'm glad that you've found this forum. The support that I've gotten here is wonderful!

I was also diagnosed in early July, so I understand what you are going through. I am also an auditor of sorts in health care (state surveyor). And I love exercising and working out, although I've slowed down a bit since my diagnosis. We have a lot in common Are you a nurse?

Fighting the insurance companies can be very difficult. I've also had to fight for appropriate treatment by my GI, which is equally frustrating and ridiculous. I'm in the process of switching GIs and hoping that I can find someone decent soon. Hang in there! I hope you are able to get your procedure done soon!

 

[Laura Dawn]

Hey Katy! No, I'm not a nurse . I am a finance auditor...

Thanks for the support. Are situations are very similar. Did spin for an hour today and I now paying for it