Is a colonoscopy necessary?

[AlexSkate]

I'm a 34 year old male currently suffering through my first UC flare.
This began on September 11, 2017 while helping a friend move. My
symptoms are urgent/frequent (every 10-20 minutes) bloody
diarrhea, abdominal pain on both sides, fatigue, weight loss of 20lbs
in 2 weeks, loss of appetite, and night sweats.

My GI doctor prescribed Lialda. She is pushing for an urgent
colonoscopy even after my CT Scan to further confirm colitis. My question
is this really necessary and is there any urgency? My doctor's nurse
was not able to convince me of the necessity or urgency. I'm
uninsured, unemployed and the colonoscopy would cost me $1,300.

Background info:
My GI doctor ordered blood work, stool test, and abdominal CT and
Pelvis scan with Barium oral and IV contrast. The blood work showed a
high platelet count. The stool test was negative for both parasites and
bacteria.

CT findings:
Much of the large intestine, most notably the descending and
rectosigmoid colon, show a colon wall which appears somewhat thickened
and shaggy/irregular. Cannot exclude a diffuse inflammatory or
infectious colitis. ( A diffuse colonic wall malignancy such as
lymphoma seems much less likely, though difficult to entirely exclude
on this baseline study). No mechanical bowel obstruction currently
identified. No free intraperitoneal air seen. No abscess identified.
There is no ascites. CT shows evidence for extensive large intestinal
abnormal wall thickening, particularly distally (descending and
rectosigmoid colon), as discussed above.

 

[Lady Organic]

The answer is a definite yes. The GI wants to know ''you'' , in what condition your disease is, the severity and what kind of colitis it is UC or crohn's. that is unclear for now to me in your report. A good colonoscopic view will help your dr decide what treatment is most interesting for you for now and for later on. I am hoping you get the chance to go for it.

 

[jennlyn12]

Yes!! speaking from personal experience I put off my colonoscopy and wish I didn't because my Crohn's colitis got worse. If you are worried about money, maybe they can work a payment plan for you?

 

[ronroush7]

Yes.

 

[eleanor_rigby]

My
symptoms are urgent/frequent (every 10-20 minutes) bloody
diarrhea, abdominal pain on both sides, fatigue, weight loss of 20lbs
in 2 weeks, loss of appetite, and night sweats.

Good grief if you don’t think all that is urgent then I would hate to see what you think is urgent!
You absolutely need a colonoscopy, it is a necessity and it is urgent. One big concern is this could actually be Crohn’s, which would mean your current treatment is useless. You need to know what exactly is going on.
My CT scan was normal but my colonoscopy was not. So you really don’t know what you are dealing with until you see those results. The colonoscopy is the gold standard for IBD. I’m amazed they are even treating you before getting a colonoscopy - to me that suggests it is even more urgent.

 

[Lady Organic]

I’m amazed they are even treating you before getting a colonoscopy - to me that suggests it is even more urgent.

I think that in the USA context where not everyone is covered for medical tests, the approach drs have can be different. Drs must be dealing with lots of patients on a regular basis who cant afford or postpone tests unfortunately. So drs treat these patients with a bottom-up approach I guess.

 

[AlexSkate]

Thank you for everyones input and advice. I greatly appreciate it.

During my first GI appointment/examination I explained to my doctor my financial situation, including not having any type of health insurance. This way she understood my full situation. She first prescribed 2 types of antibiotics Ciprofloxacin Hcl 500Mg, and Metronidazole 500Mg to treat infection and bacteria. One or both of these meds caused me to vomit every night, and feel overall much worse. I notified the doctor and stopped taking them after 3 days.

At this point my doctor recommended that I go to the ER so that all of the testing could be expedited in one location. I explained to her that I simply can not afford the ER/Hospital. I'm approaching this disease being financially responsible. I can't deal with the added stress of astronomically high ER/Hospital bills that I'll never be able to afford.

Once all of the test results were available she changed her treatment plan to Lialda. I was very fortunate to have received several free sample boxes of the expensive medicine from her nurse. I started the treatment immediately.

On my 4th day taking Lialda. Taking 4 pills once a day right after eating. My abdominal pain, frequency and urgency to the bathroom have been reduced. Night sweats and mild fever are still present. Currently my symptoms are worse in the evenings. Initially symptoms were severe 24/7 and not even fasting for days would help.

The CT Scan confirms inflammation throughout most of my colon. Lialda treats just that. It makes perfect sense to me that my doctor would prescribe it at this point. After my exam my doctor told me she suspected IBD, specifically Ulcerative Colitis. The tests done so far have supported this.

I'm thankful that my doctor has provided treatment despite not having had a colonoscopy yet. She saw first hand the severity of my symptoms when she examined me. During which I was physically exhausted and mentally defeated from being in so much pain for so long, and very weak at only 137lbs. I had to run out of her office during the physical exam to find a restroom to get sick.

I'm planning on getting a colonoscopy done soon. I want my bowels to have some time to rest and hopefully heal some from the past month of misery, before going through the MoviePrep and colonoscopy.

My friend found an all inclusive flat rate colonoscopy program for $1,085.00. When asked, my doctor would not match this price. My concern is will my doctor hold it against me if I have this procedure done elsewhere to save +$200? Will it negatively affect her care/treatment, or will she refuse to continue treating me? If so it could force me to find a new GI doctor which may end up costing the same or more.

 

[eleanor_rigby]

That all makes sense. I am sorry to hear of your situation regarding a lack of insurance and the extremely expensive tests. I live in the UK so I am only vaguely familar with the USA medical model.

It is difficult to differentiate between ulcerative colitis and Crohn's disease confined to the colon, commonly referred to as Crohn's colitis. CT and MRI may help to distinguish between cases of ulcerative colitis with minimal wall thickening and cases of Crohn disease with marked wall thickening.

It's good the Lialda is helping you and it is a very useful therapy for people with ulcerative colitis. It only treats the first layer of the bowel, which is the only layer affected in ulcerative colitis, hence why it works well for this condition. However, Crohn's goes through all layers of the bowel, and this is why Lialda is not approved for Crohn's. Trials have shown it is no better than placebo in inducing/maintaining mucosal healing and remission in Crohn's.
You can't really tell whether or not you have ulcerative colitis or Crohn's disease generally until you get a colonoscopy. And even then, many people go misdiagnosed and have their diagnoses changed years later. It is just good to be mindful about this.

I hope you are able to get the colonoscopy soon. I don't think your GI should hold it against you where you go - they should be professional and their main goal should be your wellbeing and health. If this isn't their goal and they hold things against you then you would probably be better off with a new GI anyway. But I don't know all this for sure - as I am UK based, it's just my thoughts.

 

[AlexSkate]

Thank you very much eleanor_rigby. All of the advice and information you have provided has been educational and useful. I appreciate you taking the time to help me, and for your support. I now have a much better understanding as to why a colonoscopy is so important for diagnosing my IBD.

 

[my little penguin]

Can you get insurance on the marketplace ?
So that if Crohns or UC is dx then it's not a pre existing conditions
Have you called the hospital social workers?
They can find grant money or others to help cover things
This is done for folks with no or poor insurance prior to expensive surgeries
They can also help apply for assistance

Colonoscopy is definitely needed to truly figure out what is going on
Good luck

 

[AlexSkate]

Thank you, my little penguin. I took your advice and signed up for health insurance. Unfortunately I'll have to wait longer than I'd prefer before the plan is active. I decided to lower my dosage of Lialda to 2 pills per day in order to ration them long enough before I can be seen by a doctor on the plan.

My doctor didn't provide a script for it, only the samples until after a colonoscopy is done. The samples are all I have to treat my active flare. Lialda seemed to reduce my symptoms for only a week or so. Now all of my symptoms have returned, but the frequency and intensity of pain is less severe.

I read the information sheet that came with Lialda. It states the drug can cause ulcerative colitis. So I'm not sure if its the medicine causing my returned symptoms or just the nature of UC with a short period of almost going into remission.

The worst side effect of this drug for me has been long lasting upper back pain along my spine. The pain comes and goes throughout the day. Focusing more on my diet to try and make it to my next doctors appointment with minimal suffering.

I eat several small meals throughout the day but I'm not able to put any of the weight back on. Once I receive a more definitive diagnosis of my IBD my plan is to apply for disability so I can hopefully be approved for medicaid.

 

[MaryCherub]

I'm uninsured, unemployed and the colonoscopy would cost me $1,300.

I made an arrangement with my GI to pay off the $1500 for my colonoscopy over several months in installments.

Perhaps you could also arrange some sort of payment plan.

Otherwise can you get a loan from the bank or family member?

Worse case scenario, set up a GoFundMe request.

 

[MaryCherub]

Thank you, my little penguin. I took your advice and signed up for health insurance. Unfortunately I'll have to wait longer than I'd prefer before the plan is active.

I signed up for general health insurance too. But I didn't have IBD symptoms when I signed up.

And I was a member for about two years, before I made my first claim - for the colonoscopy.

I made three claims and they rejected them all.

Their argument was: You don't suddenly develop IBD overnight. It would have been something building up for a few years. Therefore, it was classed as a "pre-existing condition", and I was not eligible for health insurance rebates.

I had to pay the whole $1500 myself, plus keep paying the health insurance premiums. I dropped it soon after.

I would double-check the fine print about pre-exisiting conditions; if I were you.

Good luck

 

[AlexSkate]

Hello MaryCherub, thank you very much for sharing your experience and advice with me. I'm definitely going to read through all of the insurance documents including the fine print when I receive them.

The main reason it took me so long to decide on getting insurance aside from the high monthly premiums was that it seemed like a huge scam. Unfortunately in your situation it was. I'm very sorry they declined your claims.

May I ask which insurance provider/plan you had at the time? Did you file appeals with the insurance company regarding the denied claims? Was this before Obamacare? I was told today that Obamacare did away with pre-existing conditions. https://www.healthcare.gov/coverage/pre-existing-conditions/

I do not recall being asked if I had a pre existing condition during the insurance application process. After taking my personal information he did mention " I can see that you are not on any medications."

I recently read articles written by GI doctors that say Ulcerative Colitis can be in your body for many many years before being triggered and show symptoms. I'm fairly certain that a colonoscopy isn't a preventative test for someone my age. If a diagnostic colonoscopy with biopsy or a flexible sigmoidoscopy with biopsy are the only ways to confirm difinitively that it's Ulcerative Colitis or Crohn's how would any doctor or insurance company be able to prove it was a pre existing condition?

 

[MaryCherub]

thank you very much for sharing your experience and advice with me. I'm definitely going to read through all of the insurance documents including the fine print when I receive them.

Alex -

I don't want to worry you; since my situation may not even happen to you.

But best to be forewarned just-in-case.

In my life experience, insurance companies will often do anything they can - to get out of paying!

There was a huge uproar in the media a few years ago in Australia. There was some massive flooding (once in 100 year event) and most of the insurance companies started saying "it was an act of God" and therefore they don't cover for that. Even though flooding was listed in the original policy when people signed up. Seems there is a fine line between a little flood from your washing machine busting, to a massive flood where the river banks collapsed.

On the following link it says : " If your insurer denied a portion of the payment for a colonoscopy, for instance, consult the language in your policy as well as your doctors staff. Colonoscopies may be fully covered by your plan if they are part of a checkup, but only partially covered if they are used for diagnostic purposes. Your doctors billing department may be able to change the bill and resubmit it"

http://www.health.com/health/article/0,,20456194,00.html

Again this may not happen to you, but best to double check.

 

[MaryCherub]

May I ask which insurance provider/plan you had at the time? Did you file appeals with the insurance company regarding the denied claims? Was this before Obamacare?

It was an Australian health fund.

I didn't take it further, apart from a few heated (me) arguments with the customer service staff at the health fund.

I was seriously ill with UC at the time, and had no energy or money to take it further.

Thinking that maybe the health insurance companies bet on that poor level of health to prevent claims......or is that me being overly cynical!

 

[The Real MC]

I signed up for general health insurance too. But I didn't have IBD symptoms when I signed up.

And I was a member for about two years, before I made my first claim - for the colonoscopy.

I made three claims and they rejected them all.

Their argument was: You don't suddenly develop IBD overnight. It would have been something building up for a few years. Therefore, it was classed as a "pre-existing condition", and I was not eligible for health insurance rebates.

I had to pay the whole $1500 myself, plus keep paying the health insurance premiums. I dropped it soon after.

I would double-check the fine print about pre-exisiting conditions; if I were you.

Good luck

Wow I can't believe you were denied for "pre-existing conditions". No one knows what causes IBD yet the insurance companies has the gall to justify the denial based on their claim that "it would had been something building up for a few years". I'd say you have a good case to argue what their established medical proof is for their basis of denial, because it doesn't exist.

 

[MaryCherub]

how would any doctor or insurance company be able to prove it was a pre existing condition?

How indeed.

They could not prove mine was pre-exisiting, but they denied the claim anyway, as they presumed it was.

As I said, you don't just develop IBD overnight, and therefore they may argue that the condition existed in your body, long before you signed up for their insurance.

Good to read that Obamacare did away with pre-existing conditions clause.....but since I read that Trump is doing away with Obamacare - where will that leave you.

Look don't panic. All may be perfectly fine with your claim. I just had a bad experience.

Maybe get a friend to ring the health fund pretending they want coverage, and have them ask about the policy on pre-exisiting conditions. That way you will find out; without alerting the fund to yours.

Good luck with it all

 

[MaryCherub]

I can't believe you were denied for "pre-existing conditions".

Believe it.

A lot of health insurance companies deny for pre-existing conditions.

It was listed in the fine print when I signed up.

When I signed up wasn't yet sick with IBD. I actually originally signed up for pregnancy cover, as was trying for a baby and wanted to be prepared.

Their argument (that IBD would have been in my body anyway when I signed up) was totally flawed and beyond ridiculous in my opinion.

They explained the concept to me thus: If you broke your leg before signing up, but then tried to claim for arthritis (caused by the break) a few months later after signing up, then this would be classed as a pre-exisiting condition. The doctor would write a report for them saying the arthritis was a direct result of the break - and hence that is grounds for them to reject you.

I believe that health cover is fine for dentist and general health issues, but anything else is not so straightforward.

Again, this may not happen to Alex. Best to be aware but not alarmed.