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Crohn's Disease Forum » General IBD Discussion » Inflammation and 9 month wait between appointments?


04-27-2016, 03:46 PM   #1
southwow
 
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Inflammation and 9 month wait between appointments?

I've been calling around lately trying to change docs because I cannot stand the bureaucratic nightmare that is Franciscan Health Network, I'm having a great deal of trouble just getting treatment to fill the gaps between treatment.

This isn't a pitiful cry for help, but rather an observation about the complete lack of progress I've made since being diagnosed 10 years ago. Since then, I've watched my professional career spiral into the toilet, my marriage go down the drain, and have raised 3 children while being the type of Dad who can't even consistently do things with my kids.

I've lost all of my 30's waiting for things to improve, compromised on everything, let go of dreams, and watched each spring and summer slip by in pain, hoping to survive until fall or winter when I could be reassessed, get more steroids, and look forward to maybe being healthy enough to go out and be active the next year.

For the last 10 years, I've been dealing with unchecked inflammation. Each doctor visit plays out exactly the same way, every 9-12 months depending on how many times the office pushes my appointment back.

Doc: "Hi, I see you haven't been here in nearly a year... we'll need to start over and reassess where you are before we can move forward. (orders small bowel series that nobody will ever schedule a follow-up for)"

Me: "Yes, this is the appointment your staff scheduled for me at my last visit. I have called about 10 times in the interim requesting help, but this was the soonest I could get in. Why does it feel like you're just playing back a recording of my last visit every time I see you?"

Doc: "I see, well let's order some Prometheus testing (that isn't going to be covered by your insurance), get you two months of steroids (so you'll run out shortly and be suffering for 7 months) and then have you schedule another appointment for say... 6 months (which won't be available as you're booked full until the end of the staff's ability to schedule appointments for you)"

Me: What about the pain I'm experiencing daily. I'm really struggling and I need some real help. Could you possibly give me enough steroids to carry me through until my next visit. Also, why does it take 6 weeks for your office to approve my biologic refills; don't you know it causes a month gap in my treatment twice a years? Also, why do they always send it to the wrong mail-order pharmacy? I make sure I leave the fax number every time I call the refill line. Is there any way to talk to an actual person when I call for a refill? Or, can I pay you extra money to actually get it right next time?

Doc: "Okay, here are you two months of steroids, and I'll see you again in 6 months (he actually means nearly a year, because I have to wait for the office to call with an opening before I even get scheduled). Are you sure you don't have any questions?

Me: "I just asked you like 15 questions, they're all important... aren't you listening to me?"

Doc: "Alright, hopefully you're doing this well next time I see you! (slaps back and walks toward hand sanitizer)."

Me: "(to receptionist) Can you call him back? He didn't even answer a single question I asked. I don't want to lose my job and insurance in 2 months, I have a family to feed and I want to be at work instead of sitting at home with back/abdominal/rectal pain".

Receptionist: "Here's your visit summary and your copay was collected before your visit, have a great day... WHO'S NEXT!!!?"

Can anyone suggest a physician in the Indianapolis area who is accepting new patients and can see me in less than 6 months.

I've called every physician group I can think of and the best they can do is the end of September/ beginning of October. Going to the ER results in 2 day of prednisone or even worse, a pointless narcotic prescription that you build a tolerance to beginning with the first dose.

Should I be looking at practices out of town or possibly even out of state?

How do acute cases actually live until their first appointment? Obviously, you can't hold down a job, so how do you remain insured until you can actually see a doctor? The doctor's office seems to treat it like you're enrolling for classes two semesters away, getting all of the financial details out front but offering no immediate treatement.

Last edited by southwow; 04-27-2016 at 04:01 PM.
04-27-2016, 04:18 PM   #2
ronroush7
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I am sorry. There is no excuse for what you are going through. I wish you had easy access to a second opinion.
04-27-2016, 06:30 PM   #3
wildbill_52280
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I've had similar experiences. Yours might be a little worse though. Just go to a different doctor. Also, it going to take much more then medication to keep things stable, I take supps and follow a very strict diet, high fiber(beans/oats wheat/broccoli), no refined sugar and even reduce natural sugar like fruits, i choose low sugar/high fiber fruits cranberries i tolerate very well and apples are tolerated. eat cheese instead of milk. read breaking the vicious cycle to learn about the SCD diet which is generally low sugar, but it advises no grain which are very high in fiber which can benefit IBD.
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04-28-2016, 10:36 AM   #4
southwow
 
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I apologize, I don't mean to unload on anyone here. This is all just venting.

I know my post count says I'm a newb, but I've been reading forums forever. I tend not to speak up until there is an issue. I've probably had asymptomatic crohn's since I was a child and am now 40. I had an emergency appendectomy as a younger child and some of the familiar pain continued occasionally.

Full-blown crohn's was set off like a light switch days after my 30th birthday in 2006. I went from 170 lbs and active to 320 lbs and sedentary literally overnight due to a debilitating reaction (after a second exposure) to a fluoroquinolone antimicrobial that set off my crohn's as well. I've managed the recurring tendonitis, bursitis, and reactive arthritis set off by the drug successfully over the years because my GP listens when I say something isn't working or I need advice on how to approach getting back on my feet.

But, specialists seem to know everything about you without reading a chart or hearing any facts. For the record, the physicians there are genuinely caring people and I know they mean to do good... but the healthcare network is a complete mess.

I've definitely followed a strict diet. Basically, all I eat is unhealthy foods now. The things I can tolerate is a pretty big list, it just contains only fatty low-nutrient foods. Like many of us, the standard fiber, seeds, high-residue foods kill me. Meat, fatty dairy foods, and white bread are pretty much my staples.

I was actually able to tolerate small amounts of popcorn (my favorite snack) until about 2 years ago when it suddenly started causing blockage symptoms when I ate it. Over the last 10 years, my pain has been progressively increasing to the point that I've been taking narcotics on a daily basis just to get to work and to sleep, gone to the hospital for blockage symptoms like many and ended up on a morphine drip, etc, but the entire time I'm being told "your stricture looks good", "you're improving slowly", "I'd say you're no longer at risk for an emergency surgery" by the gastro. There is never any mention of pain or inflammation control, even when I ask.

Contrast that to 10 years ago, when I was a fairly strict vegetarian and was outside doing something every free minute and you can understand why I'm a bit depressed.

The icing on the cake is a spinal injury from a car accident from 4-5 years ago that seems to flare and cause sciatic issues when my crohn's flares without any lifting. Instead of going to a state park with my kids every weekend, I'm lucky to mow the lawn. The opposite has been true as well, inflammation in my back has set off crohn's many times. Unfortunately, the only way to get control of inflammation with back pain is steroid injections, which haven't worked for me any longer than 3 months beyond the injection. Managing sciatica is do-able; every male in my family has had a surgery or is living with multiple herniated discs. My father had so many spinal surgeries and steroid injections that he developed Arachnoiditis and Hydrocephalus. Still, he managed to live a functional life in a world where every effective pain medication wasn't scheduled by the FDA or taken off of the market due to lawsuits.

Funny enough, every issue I've had post-fluoroquinolone has been autoimmune and/or inflammatory in nature. I'm thankful that I didn't end up with MS-like symptoms or some other untreatable syndrome.
04-28-2016, 10:47 AM   #5
ronroush7
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Don't apologize for venting. I think a lot of us do it
04-28-2016, 10:49 AM   #6
southwow
 
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Thank you sir
04-28-2016, 10:50 AM   #7
ronroush7
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Welcome. Wish you the best.

04-28-2016, 05:19 PM   #8
Scipio
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What a hassle!

I don't know these guys, but here are the IBD specialists listed on the Indiana University Gastroenterology website:

Inflammatory Bowel Disease
Matthew Bohm, DO
Monika Fischer, M.D., MSc
Sashidhar Sagi, MBBS
05-04-2016, 01:15 PM   #9
southwow
 
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What a hassle!

I don't know these guys, but here are the IBD specialists listed on the Indiana University Gastroenterology website:

Inflammatory Bowel Disease
Matthew Bohm, DO
Monika Fischer, M.D., MSc
Sashidhar Sagi, MBBS
I actually called them. 7 month wait or so for 'new' patients. I asked the receptionist directly how somebody would survive (literally, survive) such a period without treatment. She called back minutes later with an earlier appointment. I'm just trying to figure out what I'm going to do now. At least IU is nationally ranked.

I'm currently on 10 days of 40mg prednisone from the GP because the inflammation caused a pretty bad flare up of actual back pain and sciatica symptoms after trying to do some light yard work (push mow). Sadly, when the course ends, things go back to 'normal' abruptly.

The prednisone helps with all but that last bit of maddening constant abdominal pain that is like a toothache you always have. It never leaves unless I'm taking real pain meds at the same time (which is basically never).

Entocort doesn't do so well, my back can still flare with the slightest attempt at activity. But, given the alternative, it's a blessing.
05-04-2016, 01:19 PM   #10
ronroush7
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Have you talked to a nutritionist?

05-04-2016, 02:07 PM   #11
eleanor_rigby
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Southwow you sound like me - the steroids helped my asthma but did nothing for the constant abdominal pain. Now I have been on azathioprine for a month I am noticing the pain less... But don't want to speak too soon!
05-17-2016, 10:30 AM   #12
southwow
 
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Thanks eleanor_rigby. I take allopurinol (since a week after my crohn's symptoms started).

Does anyone know if there is a link between elevated uric acid and IBS/Crohn's?

For me, I was having severe bursitis/tendinitis in my legs and feet in 2006 (just before my Achilles tear) due to Levaquin. I'd never had elevated uric acid, but viola! There it was. My crohn's also became active with the first dose of the fluoroquinolone. Just FYI, what you don't hear on TV and read in the literature is that the tendinopathy and reactive arthritis usually literally last for years. I still have exercise intolerance a decade out for the occurrence and I was 10 mile a week jogger until my second pill. Haven't been able to even walk for exercise regularly since.

All of this being said... I've never had any symptoms of gout (not even a pain in my big toe, lol), but I took several gout medications religiously with no change in condition for 2 years. My doc suggested I stay on allopurinol for some reason (maybe elevated bp?).
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