my gi doc highly recommended this product and perhaps it might help you with nutritional needs.      https://enterade.com

any news from the insurance?  previously i mentioned getting a second opinion outside of the current hospital system, and that too might ease the road block in figuring out how to get the camera pill.

keep us posted.  we are cheering for you.  janet

No progress with insurance yet....I'm calling and calling to get records released from last pill cam to prove I have had it done.....it's just amazing to me the lack of urgency from the old doctor's office. I have signed and requested release 3x! It never got sent to my insurance....as I thought it had in the last appeal Niw I can't get ahold of either office. I've been up all light for 2 nights in a row....like I have had a bowel prep....exaughsted and working Thanjs for checking in.....I will check out your recommendation

ARGH! I hate hearing how much trouble you are having getting people that are supposed to help to actually help you! I get so frustrated with the "system!" Have you had any luck yet? Can you or someone you trust get to the doctor's office and demand a copy of the records you need? I once had to do just that -- and the presence of an very unhappy sick lady standing around and pacing and waiting basically forced them to give me my paperwork. Not pleasant, but effective.

Hang in there! --Jen

No luck at all! I contacted the GI doc that ordered the test and "supervised" the test. 4x!!! Each time they say "oh well we don't have any records in you that go back that far". So I asked "wouldn't the records be in the hospital system since your office is at the hospital? Certainly they haven't deleted my entire medical record since it's pertinent to my on going care in their system right?" They have records from before the test and from after but THAT part isn't there". So....I contacted the surgeon who worked along side the GI to make a plan if whether or not to do a small bowel resection as a result of that test. They only have records of the surgery I had. Again no record of the test that sent me to them in the first place. So....I called BCBS of FL again assuming that they would have a record of what they have paid for or denied along this healthcare journey. Interestingly enough, BCBS has full record of my visit with CCF surgeon in Aug of 2011 and records of my visit with the GI (who can't find records) in Dec. 2011......but MY OWN insurance company has NO record that they not only covered the pill cam, but never once questioned it! Nor do they have any record that I had a small bowel resection!!!! Are you kidding me?? I started crying on the phone. She actually asked me if I was sure I had a small bowel resection. Am I sure????? Um.....no.....maybe I'm mistaken.....maybe I created the surgeon, the hospital stay, the pain, the bill, the scar, oh and the extra surgery (Re do) because I hemorrhaged after ripping the internal sutures because I vomitted for 8 hours following surgery as they withheld the phenergan! I'm at a loss. I can't fix myself....I'm not a surgeon, nor a GI doc, nor an insurance company.....but I am a human being.....who isn't getting any better or stronger. Sorry for the rant.....just feeling defeated. Thanks for listening

  Simply unacceptable and I'm so sorry you are going through this.  Of course stress makes any health situation worse.

 Who knew that Franz Kafka had a day job in medical administration.

 Can you try calling the office of the president ?  you won't get him or her, but you will get somebody who deals with complaints.   They may refer you to an advocates office in the hospital system or also call that office yourself. I trust you've dealt with the nurses affiliated with the G.I. docs.  I usually find them  more sympathetic and helpful in knowing the system

you can rant all you want here we've all done it! And we listen, because others have listened  to us.  Keep us posted. Good luck, Janet 

Time for a lawyer and also calling Insurance commission in your state.

I'm screaming at all of them for you right now!! Such important missing records, and from 2011 -- it's not like you're talking about 1990?!?! What happened to the modern age of medicine and information technology?!?! I'm going through this right now on a smaller scale with Blue Cross and CCF -- but at least CCF has the test & billing info from 3 years ago. That helped my find my own paperwork to show BC -- but it's been months of back and forth while I refuse to pay for the unpaid test from last year and keep calling to keep it out of collections. It makes me soooo angry!

Is there any possibility of heading at it from a different direction? If you can't prove the past, prove today's medical need? What does which doctor need to say or write that would meet their requirements? I'm so sorry you are going through this -- I've been there and I hate stressing and crying over this BS! But you have to believe there's a way and try to stay positive -- something or someone will come around to help. Also hoping you're doing whatever you can to keep up your strength or get help to stay healthy with your current issues.

God bless you and I will keep you in my prayers for an answer,

Jen

Finally got the pill camera approved after getting the doc to complete the peer to peer with the insurance company. Swallowed the pill Wednesday and still waiting to hear back with results. Still having all of the same symptoms and frustrations with the "guts" and the "fanny". Tomorrow is another day

Congratulations!! Now let's see what is going on in there...

So after 3 weeks of leaving messages, being ignored by secretaries, nurses, staff, and anyone else who answered the phone.....I lost my marbles on the doc's answering machine. The doc himself called me. He did apologize for the delay in anyone calling me with any kind of results. He said the pill camera showed a huge area of ulceration exactly where I complain of the pain and noise in my belly. It's at the same spot again....the take down/stoma/anastomosis spot (which I had resected in 2011). He sees ulcers in the pouch too. He says we have to do an exploratory surgery to likely resect it and likely a temp ileo to rest things in there. So....now that I can't take any time off work or I will lose my job....I have to wait until end of May when school lets out. It could be much worse.....so I will take the news and use the time to process what I am up against. Don't get me wrong, I would do it tomorrow if I could, but I have to think about how I will pay for my son's hospital bills and continued needs....and that's by having a job. He comes first. This is what moms do. Just hanging in and doing my best to keep nutrients going in to sustain. Thanks for listening

Sharon,

I was happy to hear you got your test finally -- and now this. One step forward, but headed up a very steep hill. I hope you are doing better nutritionally as this has got to be taking its toll. What a warrior you are! 

I also understand and admire your dedication to your son! I've been though my own personal hell with this disease while raising my two sons from 9 & 11 to now 15 & 17. They are so challenging and amazing they defy description -- I don't know what I would have done without them lighting my way. Remember that ultimately, a healthy Mom is the most important thing for him and for you! 

I hope you can get several medical opinions on what to do next now that you have the info on what it causing your problems. It sounds like it wasn't something new, but pretty much what you thought. But given the added ulcerations in the pouch, I'd hate to think you are going to go another round to try to save the unsaveable. Though I know it's difficult weighing the short term vs long term implications of all this sometimes -- the lack of response from your doc certainly isn't helping! :-(

My bias is that I wasted too much time not getting mine taken out sooner -- both the colon and the pouch. Many doctors like mine still go too long keeping organs with the best intentions but they overlook the individual. You are not a statistic! You know you better than anyone -- doctors can be better or worse, but they are still mostly carpenters (albeit, life saving ones!) Get really good doctors to look at your test results closely and run more if necessary to accurately determine the possible causes so you can decide what's best for you and your family!

Keeping you and your son in my prayers for support & guidance,

Jennifer