Frustrated…

Where have I been you ask?  I have been hiding for several reasons, the biggest of which is my health.  I usually don’t talk much about my health because well its more on the personnel side.  Well I knew April would be a tough month with so many medical test that I just figured it was time to take a hiatus from the blog and focus on my family.  You are probably wondering what led me to that point and to an extent I will share, I will leave out some of the gory details…

It was almost 18 months ago that I was blessed with a baby boy, if you follow the blog regularly you have likely seen him in the pictures.  Well, I took three months of maternity leave to be with him during which time I fell ill to what seemed like a stomach flu; you know fever, chills and lots of porcelain throne hugging.   It lasted for 2 days…until it came back again a few days later…and then again a few weeks later…I thought nothing of it until May when I had enough of this on and off again gastrointestinal problems and decided to go see my GP.  Of course I was immediately off for a CBC, which came back with a few out of range numbers which suggested malabsorption of Calcium and Vitamin D, typical of my gastrointestinal symptoms.  I was immediately placed on supplements and then of course she suggested the usual IBS bit but referred me to a GI to make absolutely certain.

The GI appointment was like any other appointment, looked at the CBC and added a Celiac blood test to the mix.  I tested negative to celiac, so the GI suggested that I had a post infectious IBS and possibly SIBO (small intestinal bacterial overgrowth).  She wanted me to take Rifraximin for the condition, so I took the prescription went to get it filled only to find out that my out of pocket cost was going to be about $1200.  Of course I think that is a bit outrageous for a drug that as the GI had put it “might solve my problems”.  So she told me to try the sample pharmacy and I got lucky and was able to get the full dose of meds.  I took them only to find out once I stopped all my symptoms reappeared.  Back to the GI I went…This time I came home with a prescription for 3 months of amoxicillin.  I took it for 10 days with no improvements so I stopped.  I couldn’t quite understand why I would be on an antibiotic for so long…

Months went by before I could go see my GI again because that is just the way her schedule is…So come September, I tell her how I am doing which at this point I had never felt so horrible in my entire life and I was starting to drop weight, albeit not super fast.  She suggested we do a CT Scan.  During our discussion she mentioned how I was likely gluten intolerant and possibly lactose intolerant but she didn’t expect me to do anything about it since I had such a young son.  Fuming over the fact that she would judge my inability to change my diet I did some research and discovered the Specific Carbohydrate Diet.  I said why not, what could it hurt and started conforming.  The CT Scan came back normal…

Come back in December with the same old crap (no pun intended), but still on the diet.  Now we are back to IBS diagnosis, so she prescribes the go to IBS drug of Donnatol.  Wew did that do a number on me.  Wow, I only thought I felt bad until after I took my first dose!  So I waited until I could get back in January.   Then I get Bentyl, same thing…Not good!  Come February I am going on vacation to Hawaii and I can’t get in to see my GI so I go back to me GP hoping for another alternative and I come home with Buspirone.   This time it doesn’t make me worse but it doesn’t make me better so she tells me to quite.

I get back from Hawaii and I go back to my GI who suggest I go on a drug that was released by FDA and then removed by FDA for cause of death.  No thanks!  She suggest I get a colonscopy; I think it sounds like a blast so I sign up.  No really at this point I am so frustrated with the system and that particular doctor I leave knowing I am going to find a different doctor…

I get clearance from my insurance to see a doctor at UNM for my problems.  The first visit I spend an hour in the exam room discussing my dilemmas he too suggest a colonscopy because he thinks it might be IBD. At this point I don’t really care what test I go through I would just like something to be indicative of a problem that can be fixed. I am tired and lost 50 lbs and everyday I take a supplement to make sure I don’t loose more. Ok so I sign myself up for the test and it comes back negative.  Two weeks later I get these results from him first hand and he is baffled because well the test prep has made me way worse than I have been.  So he suggest SIBO, I get to take the Hydrogen Breath Test in two weeks! But wait there is more…I get to go on the FODMAP diet, but in conjunction with the SCD diet.  If I had only known how little I would be allowed to eat I would have argued at the office.  No improvement thus far just frustration.

I am signed myself up to see a dietitian because this is nuts!  You should see the list of foods I can’t eat.  In just one week I lost 8 lbs. I have lost motivation to eat really, it just isn’t worth it on so many levels…

So I remain undiagnosed but plugging away because what other option do I really have? More to come…

I can’t help but laugh about all this, it just seems so comical when I write it all down!  “Just keep swimming” -Dori from Finding Nemo