Taking charge of YOUR health

I’m warning you up front, this may get a bit long and a tad graphic, so you can feel free to stop reading now if you’d like.

That being said, I really feel I need to share my story to encourage someone out there that they aren’t crazy and second opinions are a very good thing.

Earlier this year, I had gut issues.  I’ll spare you all the nasty details but they were somewhat debilitating.  They would come out of the blue and double me over and last for 3 – 4 hours at a time.  I kept trying to attribute them to a virus or something I ate.  While in to see my regular GP for a sinus infection, I mentioned it.

Before I knew it I was scheduled for the dreaded colonoscopy.  They found ulcers in my large & small colon.  The doctor, who I’ll call Dr. V, in my local smaller town hospital diagnosed me as having ulcerative colitis and more than likely Crohns disease.  He put me on steroids for 3 months to clear up the ulcers and then said we would go from there.  The episodes were fewer and further in between so the drugs were working.  So far so good right?  Well, other than the 15 lbs I gained while on the steroids. grrr!. 

After the three months of steroids, I went in for an office visit.  I asked about diet.  Dr. V said diet didn’t matter but then in the next breath he told me to be careful what I ate. Huh?  Then he gave me a prescription for a Crohns maintenance drug so it wouldn’t flare up again, even though he wasn’t 100% sure that’s what I had.  I prefer not to take any more scripts than necessary.  I’m funny that way.  So I questioned it a bit especially when he said it was sulfa based.  I’m allergic to sulfa which he knew and I also reminded him of.  He shrugged his shoulders and said “it doesn’t matter.”  That set me off, just a little.  Then I asked the question of all questions which I think really set him off a bit “what is the possibility that something was missed on the colonoscopy?”.  A valid question in my book as my Mom was diagnosed with colon cancer at 52.  I’m 50.  He briskly said in a bit louder voice “I didn’t miss anything!” then gave me a sample of the script and said to try it and let him know if it caused a problem.  Out the door he went. I left his office pretty much spitting mad but I did try the med for three days until I broke out in a rash.  I threw it out and promptly called the UW-Madison clinic for a second opinion!

I went to my appointment in Madison and instantly felt like I was being heard.  This doc, who I’ll call Dr. W, said the pathology reports from my local hospital and the doctors notes were conflicting.  Great.  He said he would really like to do a second colonoscopy to see for himself what we are dealing with.  Ugh! but I consented to it to get to the bottom (no pun intended) of things.

The colonoscopy showed no more ulcers, no tumors and my blood tests came back great!  YEA!  However, I’m still having some symptoms but not to the severity of earlier this spring so we still needed to do something.

Dr. W’s explanation is that my colon is still on hypersensitive status from all the earlier problems.  He gave me medication to calm it down and said after 9 – 12 months he’s pretty sure I won’t need it anymore.  Yeah!  He also suggested a low carb/no sugar diet, virtually an Atkins diet.  I’m familiar with Atkins as I had been on Atkins for quite a while but the last two years I’ve sort of fallen off the wagon.  So back to Atkins I go starting tomorrow.  I find I do better starting things like this on Mondays as weekend are hard to not eat other things.  I might as well get off on the right foot.

The other side of this is if I would have stayed with Dr. V.  locally, he would have continued to throw drugs at my problem by guessing what was really going on therefore not really treating the issue at hand! 

I ran into a similar problem a couple of years ago after my thyroid cancer.  The endocrinologist, Dr. H, I was referred to locally would not listen to my concerns or symptoms.  When I mentioned anything, he constantly told me it was my hormones and out the door he would go.  The thyroid is funky organ.  If your levels, either actual or synthetic aren’t right, it can wreak all sorts of havoc with you.  I stuck it out with Dr. H. for two years until I got so fed up I went for a second opinion.  I now see an endo, Dr. P., at UW-Madison who also specializes in cancer patients and love her.  She monitors me very closely through yearly exams and ultrasounds.  She has regulated my Synthroid medicine as well as it can be.  I have blood work every 6 months to make sure the levels are correct. But the best part is, she spends time and actually listens to what is going on and adjusts accordingly!  What a novel idea for a doctor!

I’m blessed that a teaching hospital is only an hour and half drive for me and I know not everyone has that kind of luxury.  However, I’m not writing this to promote UW-Madison or a teaching hospital.  I’m writing this to encourage you to take charge of your own health because if you don’t no one else will. 

Get those second opinions!  Follow that gut instinct and when something doesn’t feel right physically or you don’t think your doc is hearing you, don’t accept status quo, do something about it! 

We are blessed to live in a country that has good healthcare available but it’s only as available as we choose to make it.  I can’t count the people that I’ve talked with that say “I can’t change.  I’ve always went to Dr. ___” or “well, I don’t understand why but that’s what the doctor said” or they just come from the doctors office and shrug their shoulders because they still don’t have answers or processes to get those answers.  That’s unacceptable folks!  Keep asking until you get your questions answered and if you still can’t get them answered where you currently are, find someone who can.  Medical records can be transferred.  Your health is too important to be pushed aside by a doctor who is too busy or doesn’t care enough to take the time to discuss issues with you.

If you’ve hung with me through this long drawn out rant, thank you for your patience.

ok, stepping down off my soap box now….