Waiting!! >:(

[Cat-a-Tonic]

Does it drive anyone else crazy when your doctor makes you wait and wait and wait?? I'm about to pull my hair out! I'm waiting on my pill cam results. I had the pill cam done last week and I was told at the hospital that it should take about 1 to 2 weeks for the results. But when I called my GI's office today to ask if the results are ready, I was told by my GI's nurse that it usually takes about a month to get pill cam results! Ugh! I have a follow-up appointment with my GI on Oct 4th, and now I don't know if they'll even have the results back by then. I may have to cancel my appointment, and of course it takes forever to get another appointment. So annoying!

Also, I've been waiting to go on either Endocort or pred. My GI would prefer that I go on Endocort. However, Endocort isn't covered by my insurance, so the last time I saw my GI he said he'd make some calls and try to work something out. But today I find out that the first step in me getting Endocort would be for him to actually write out the prescription and then for it to be rejected by my insurance - he never wrote the prescription, so nothing's been done with that! I could scream! They said they'd have to go through this whole process of trying to get Endocort, and if/when they totally fail at that, then I can maybe go on a very short low dose taper of pred again. In the meantime, while I'm WAITING, I'm taking multiple Lomotils and Zofrans per day because I don't have any other meds and I need to keep my symptoms at bay so I can still work.

And speaking of work, I am in the process of trying to apply for FMLA so that I can call in sick without risking losing my job. I faxed my GI's office the paperwork weeks ago, and after about a week of not hearing anything, I called his office to make sure I had sent it to the right fax number. The receptionist I talked to that day had a snippy attitude and said she hadn't even given my GI the paperwork yet because she said GIs don't normally fill that out, GPs do. I had explained in a letter attached to the paperwork that I would much rather my GI fill out the paperwork, because I haven't seen my GP in months and my GI knows much more about what's going on with me & my situation. She grudgingly agreed to give him the paperwork the followning week, but that I shouldn't expect him to fill it out. Soooo, I talked to my GI's office again today, and the nurse told me that he's actually been working on the paperwork, but it's not ready yet. It's only 4 pages - just fill it out so I don't lose my job already! Is that so much to ask? If I lose my job then I lose my insurance and my GI loses me as a patient, so it's in his interest to fill out the paperwork.

I don't get why everything takes so long! I'm just so sick of waiting for everything! Waiting for a diagnosis, waiting for test results, waiting for insurance and meds, waiting for paperwork, waiting for appointments. It is driving me crazy!!!

 

[Tinkerbell]

I know exacty what you mean.......I'm fed up of waiting! I have had my name down for a pill cam since July and apparently I have to have a dummy pill first then have the actual pill cam!?!?!? I was promised next week for the dummy pill however still not had an appointment through the post so I phoned today and they have said another 2 weeks before the dummy pill then another 3 weeks after that for the actual pill.......and then probably waiting again for the results!! grrrrr

I really hope you get somewhere soon.

 

[Cat-a-Tonic]

Thanks, Tinkerbell. Sorry to hear you're playing the waiting game too! I had the opposite problem as you did - my GI wanted to rush the pill cam so he opted to skip the dummy capsule and the small bowel follow-through. So I swallowed that pill cam not knowing for sure whether or not it was going to get stuck. A little scary, and I haven't seen it expelled, but the nurse said I may not see it since it sinks to the bottom of the toilet when it's poo'ed out. I've been poo'ing normally and don't feel like I'm blocked or anything and it's been a week now so I'm fairly certain it didn't get stuck, but it was still a bit scary not taking any precautionary steps ahead of time! So at least you're somewhat lucky in that regard, although it sucks that it means you have to wait longer.

 

[bushydougie]

I feel your pain cat. I was supposed to see the GI today but my appointment was canceled for 3 more weeks I think he's on holiday... I finish my taper of pred on Friday and am worried about how I'll be. It is such a frustrating time isn't it?!
My GP had to write a letter to my employer telling them about my symptoms. I saw him and he already had the letter and be asked me what I wanted to be said then explained that he wouldn be writing I til at least the week after. After he'd written it I then had to wait over another week for the secretaries to type the letter so that I could check it before it was eventually sent on. Argh!!!
I hope your results come back soon

 

[Astra]

Aw Cat!
this stinks! but everyone's got us by the short and curlys I'm afraid!
Do what I do, just do a Rumpelstiltskin through their laminated floor! One day they're gonna cart me off with the men in white coats!
hang on in there hun, you're doing great!
You'll have your answers soon
xxxxxx

 

[Dallies]

:hang: xxxxxxxxxxxxxxx

 

[seaofdreams]

Sorry to hear you're getting messed around so much Cat. Wishing you the best and so hoping that they get their butts into gear and get you some results soon! :hug:

 

[Dexky]

I'm still with you Cat...waiting!! Sorry for the frustration!!

 

[Cat-a-Tonic]

Sam, that sucks that your doctor postponed your appointment! I have a feeling something similar will happen to me if my pill cam results aren't back by my next appointment on Oct 4th. It's so frustrating being told one thing and then having that pushed way back! I hope you still feel okay when you finish with the pred. And why did it take over a week for the secretary to type one letter? That's ridiculous!

Joan, you crack me up. I believe that's the first time I've seen a post which mentions both "short & curlies" and Rumplestiltskin! Too funny!

Thanks Dallies, Nicci and Mark for your support. You guys are all the best!

 

[Cat-a-Tonic]

Update on me: I was so upset this morning because I talked to my GI's office again, and the nurse said that my GI doesn't want me going on pred or Endocort until we get the pill cam results back. Since I was told it would be a month for those results and it's only been a week, that means I'd have to wait another 3 weeks. Ugh!

So I told the nurse that I'm feeling poorly now and frankly can barely make it through a day of work - I've had no appetite, been nauseous, having a bit of blood on the TP, and been really light-headed and weak the past few days. She wrote down everything I said and told me she'd check with my GI.

I just got a call back, and my GI has agreed to start the Endocort process now instead of making me wait for the pill cam results. So hopefully this process doesn't take very long - the prescription has to get rejected by my insurance and then my GI can appeal it, and if the appeal is approved then I should be able to get it for free or cheap. Apparently Endocort is about $1000 per month if insurance doesn't cover it, so we'll see what it ends up being after the appeal process. My regular co-pay on generics is $10 which is what pred would be if they would agree to put me on pred, but so far they'd much rather I be on Endocort. So we'll see what happens. In the meantime, I'll just keep waiting!

 

[bushydougie]

Thank goodness they are starting the process Cat. At least it is moving in the right direction at last!! Well done you for phoning up and getting something done.
I have my fingers crossed about the results too. Every day I hope that you will post that you've got the results and finally have some news that will lead to a diagnosis... One day soon I hope

 

[Cat-a-Tonic]

Thanks Sam. It sounds like the results won't be back for awhile. The nurse I spoke to today said that it looks like the pill cam movie hasn't even been uploaded to the computer system yet. My GI obviously can't watch it until it's in the computer system, so who knows when that will be. I know he really wants to get me figured out, so I'm sure he'll watch the movie as soon as possible when it's in the computer.

On a somewhat lighter note, I had asked if I could get a copy of the movie once my GI has seen it, and I was told maybe. A couple of my friends suggested that if I do get ahold of the pill cam movie, that I should have a party where we all watch it together. Yep, I have awesome friends.

 

[seaofdreams]

That must be a relief to know you're finally getting somewhere with all of this!
If you get the movie, you'll have to post it on here for us to watch too

 

[Dexky]

I just got a call back, and my GI has agreed to start the Endocort process now instead of making me wait for the pill cam results.

That's good Cat!! At least they are taking you seriously!! Good luck!!

 

[Manzyb]

Good Cat!! You've been playing a lot of the waiting game. I'm glad he agreed to give you the Entocort so you could get that ball rolling!! It's about time and hopefully you can get it cheap and you will start to feel better!