Wednesday, March 4, 2015


In Shock from the Doctor:

Let me start by saying I LOVE DOCTORS. I'm not being sarcastic, I'm sincere. I have an amazing Cystic Fibrosis Doctor, I had a great GP growing up, Amazing CF Pediatrician,  great eye doctor, Cerebral Palsy Specialist, etc. Seriously, I've never had much complaint! I had a doctor in the past that was a lil apathetic about treating my CF,, he wasn't as aggressive as I wanted. He was a good doc, but not right fit for me. For example: That Doctor would tell me I was doing a great job, my lung function was good enough for my age, and keep it up. My CF Doc now (Doc B), tells me how great I'm doing, but also encourages me to jog and exercise. He emphasizes the extra stuff I can do to REALLY help me make the most impact! I love that and respect that. I feel he won't let me slide and get away with missing meds or slacking off, which is what I want!

Aw, Me and Mom so happy to be at the GI and excited to solve this issue. Little did we know.... (dun dun dun....)

I can put up with pompous or abrasive, straight forward, or even arrogant.

HOWEVER, this Doc wasn't just pompous, he was a * beep*, well a butt-head.  I know everyone has had bad experiences with Docs, but he was down right mean and insulting to me, my mom, and Doc B. NOBODY insults my mom or Doc B in front of me. So here is how the appointment went:

He asked what I was there for today. I said " I've always had GI issues from my Cystic Fibrosis, such as constipation or diarrhea, but I also got a lot of intestinal blockages growing up. I had some surgeries for intestinal blockages, and part of my intestines removed. "     (around 20% mom says)

side note: a huge portion is from my surgery right after birth, my intestines were twisted & blocked up and had gangrene at birth, so they removed a large portion right away. I was life flighted to another hospital, taken into emergency surgery. I spent the first 5 months of my life in the hospital. I'm lucky I was born 12 weeks premature, because I was dying inside of my mom and if I hadn't decided to come out at that time, the doctors wouldn't have known anything was wrong and I would have died inside her. Whew!

(picture, of mother studying the anatomy of the colon or um.. butt, before the Doc came in... haha love her. She's such a nerd.)

Okay back to my story:

I continued " However, in the last few years I've had more pain below,  not like bowel obstruction pain,  this pain is more intense and comes and goes in waves. I also have worse and more nasty diarrhea (ew, I know, sorry). It affects my ability to work and do things. I was admitted in 2013 for it, they said my colon was inflamed on the scan and I had colonoscopy done. It was clean. I felt better after 2 months so we gave it a rest. But since Jan it has been happening again. The pain, cramps, and bathroom issues. My CF doc said where the pain was could be colitis and I should see a specialist."

The doctor then kept asking about my bowel obstruction problems (which I was like okay, thorough history..okay...) When I proceeded to tell him I take Miralax that doc prescribed 2 x a day to keep me regular when having Bathroom issues. The doctor said "that didn't make sense to give me Miralax if having diarrhea.  I explained that the amount of  stool I pass isn't a lot, so Doc B said I could have a partial obstruction as well, causing the bloating, and only the liquid/diarrhea could pass around it. The doctor then said that THAT DIDN'T MAKE SENSE either.

 Which it does and Doc B isn't the ONLY doctor to say that to me. So then he asks how long I go without going the bathroom before I take Miralax and how long could I go without passing stool. I said well, normally I call my doc after 2-3 days of not going the bathroom and he has me do Miralax for 5-7 days. I said I could go a long time without going the bathroom if I didn't take action (like Miralax or hospital) and that was a big problem for me growing up. He kept haranguing me for specifics I couldn't really give, because each blockage was different. Some passed on there own, some I need enemas daily, some required surgery. It depended.

He kept asking over and over how long I could without going the bathroom and Mom finally spoke up and said " like months" ...She was going to explain that if they didn't resolve in a day or two on their own then I'd be admitted for it. Because it would take weeks of daily enemas and a NG tube down my nose to relieve the pressure / suck up the stomach acid. BUT she didn't get to continue, he cut her off YELLING at her (Literally, raised his voice with a smart ass, proud tone) "It is impossible to go months without passing bowel."  I said " I didn't go months. They longest I went was 3 weeks AND sometimes would be hospitalized for 2 months for it. They would do enemas constantly to relieve it, I'd get all my nutrients via IV, and the NG tube would be another resource they used. Sometimes eventually they would get it resolved and passed, but it would do it again right away. It's due to scar tissue from all the surgeries. So I'd spend months fighting them"

He also said it as impossible to suck up bowel through an NG tube, which I said they had done.  I replied to that "Fine, you're right, I'm just STUPID"   But I was 18 and all my family and friends remembers very clearly. I had to drink a liquid that made everything in me bubble up and then the NG tube would suck poop out of me, seriously through an NG TUBE. You could see the poop, it was poop coming out the tube through my nose. Yes, mostly is sucked out stomach acid, but they had me drink stuff and the poop came out too! GAAAAAH.

At this point he could tell I was pissed. He had yelled at mom and insinuated she was a liar, she looked like she was gonna cry. So he wanted to end the appointment fast and said: 

that obviously "Doc is prescribing too much Miralax to compensate and that is causing my Hill & Valley" Diarrhea / Constipation problems I'm having and that the pain and issues are probably from the overuse of Miralax and I may have an imbalance in my bacteria in my small intestine.

I added "That Doc B has me taking more Probiotics to help with bacteria. And he interrupted me saying "that wouldn't help my small intestine and doesn't make a difference, that the zithromax (i take for my lungs) may have an affect there, plus the Miralax. But there is nothing that points to the Colon. And since the colonoscopy they did in 2013 was clean, obviously that's not the issue. So they can do a scan of my small intestine and see what it looks like, but its from the Miralax and history.

Then he felt around my gut (only the top portion, not near my colon, where it hurts where you press. And told me to have the scan done and have results sent to him.

So let me get this straight. The scan that showed an inflamed Colon in 2013 and all the pain I'm having down below is nothing. I'm crazy and stupid. Mom and I are liars. Oh and my AMAZING (one of the best CF specialists in the nation, he has HIS OWN PRIVATE PRACTICE and is a leading center for clinical trials) Doc B doesn't know what he is doing and prescribing me the wrong things and those meds he has me doing are causing this problem....


I would like to cuss here. But I will not, I'm better than that. BUT my mother & I are not idiots. I wouldn't be alive at the age of 30 with Cystic Fibrosis, Cerebral Palsy, Arthritis, Liver issues, Seizure Disorders, and more if SHE WASN'T SMART and took good care of me! AND NOBODY insults Doctor B.

I wanted to punch they guy, but I was so over being there. I just said uh huh to everything and left. I have an appointment with Doc B on Monday anyway, so I'll tell him everything AND ask him about the test!

GRRRRRRR. So nothing was solved and it was a waste of time, gas, money. 2.5 hour drive one way for that jerkface!!!!

In good news, I'm still not worried, Doc B will find me a better GI and honestly I think the Prednisone is helping the inflammation in the colon like Doc said it would. Cuz the cramps haven't come back in 3 days. I've been on Prednisone little over a week. I have faith my CF doc will figure it out and consult with a GI.

Everything will be okay, just an exhausting day. I'll keep you posted on my appointment Monday! I'm going to find out my Lung function (since getting Cayston) and we will be discussing my doing the new clinical trial too!

And at least Mom and I got to eat at Boston Markcet (Which I love) Yum! Hope y'all had a better day than I did. Whew.

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