Shocked, confused, Denial

Crohn's Disease Forum

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Jun 3, 2015
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Hello.
I am a 64 year old female and recently had a colonoscopy exam, not because of any complaints but as a routine exam due to a family history of colon cancer. When I was told the pathology report suspected I had Crohn's I was shocked and dismayed. I have always had problems with stomach pain and change in my bowels but contributed that to whatever I ate or drank. However, these symptoms were never severe enough to interfered with my daily activities or cause me to crawl into bed.

I attributed the pain in my stomach to two surgeries I previously had, hysterectomy and to remove large amounts of scar tissue from the first surgery. The doctor told me that the scar tissue had started to adhere to my ovaries and bowels and that she removed as much as she could but not all of it. After doing some research I learned that this could cause abdominal pain and occasionally it did but only after certain activities and during stressful periods. I've had no other surgeries and besides hypertension and high cholesterol, I have had no other medical problems.

So, now at 64, retired, living on a fixed income and having to pay for my insurance my self, I have been diagnosed with Crohn's. Needless to say I am worried, scared and confused, the test I've had so far have caused me financial strain and I haven't even started on medications. My doctor wants to do a capsule endoscopy which my insurance won't authorize because they want me to do an ENG first. The problem is because I have been fairly healthy and I pay for my own insurance I have a high deductible which I haven't met yet. Therefore, these test will cost me money I don't have. I'm so discouraged and since the symptoms haven't changed or worsened I am thinking of foregoing further testing and start using Probiotics.

I don't have any of the episodes I've read about, no uncontrollable accidents or the need to be aware where pubic restrooms are located, no aches or pains that cause severe discomfort, no unexplained fevers, change in bowel habits yes but something I've dealt with most of my life depending on what I ate or drank.

I don't know anyone who has this disease and have no one to discuss my concerns with and this has left me feeling helpless and alone. Glad to have found this forum where I can at least vent my concerns to others who have or are going through this.
 
I'm sorry, I know it is a good thing that your symptoms are not severe, but I can see that makes it harder to decide if it is worth paying for further tests and treatments. The worry is that untreated Crohn's can cause more problems later on than it would if treatment started now.

It's worth asking your doctor to fully explain why particular tests are necessary, and if you are able to, see if another doctor aggrees. I'm sorry I don't know what an ENG is. A capsule endoscopy is a very thorough test for assessing Crohn's but it isn't necessary for every Crohn's patient.

I'm in the UK so I can't advise on insurance issues, but there is a support group on this forum for people with Crohn's and financial problems and related issues:
http://www.crohnsforum.com/showthread.php?t=51690
 
Welcome to the forum. I will start with saying that there are some people with Crohn's who does not have the "usual' symptoms, so you may be one of them. On the other hand you may not have the disease. Talk to your Doctor and explain to him/her about your financial troubles. There may be other tests you can get before pill cam, like sedation rate or fecal calprotectin. Most insurances do not cover pill cam since they consider it experimental. Check your insurance and maybe they can cover some labs. I hope you find answers soon.
 

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