New Doctor, Diagnosis & Finally Starting to Feel Better

So after feeling like I have been on an emotional roller coaster of uncertainty for the past few months I finally am feeling a little confident in understanding what is going on with my body and that I am now in good hands to work on treating it. 

Basically I was fed up with the lack of communication on the part of my previous doctor. Prescribing medications without much explanation I felt so in the dark about what my results were showing that I knew I needed a second opinion. 

Enter social media. I shared my last health blog update on my Facebook page with a call for help for GI doc recommendations and got a whole SLEW of answers. I am not one to share much on the FB unless it is running related but it was such a good decision. 

And so it began that I was able to get an appointment within a week at a new doctor. The most challenging part was having my results faxed over - I had to call every day to the office to make sure that they were sending them. 

Friday morning I had my appointment and not only was I seen on time, but they spent about 2 hours with me - from reviewing and writing up my entire history, to explaining the test results from all the blood work and procedures thus far to laying out a new plan of action for me. 

They wanted ME to get it. Heck he started drawing diagrams at one point. 

So basically yes, I definitely have IBD. He is mostly positive it is Crohn's but I also have a couple of symptoms that would point to Ulcerative Colitis - BUT the ulceration that I have is a definitive indicator of Crohn's which the several biopsies taken during my colonoscopy confirmed (seriously my doctor told me it was "inconclusive" and my new doctor read the results to me which said otherwise). 

He wants to do an upper GI test though since that is where most of the damage is to see although he isn't pressing for me to get it immediately. Apparently the next one will be more fun because I get to swallow a capsule camera sounds like way more fun than a colonoscopy ;)

He also explained that my celiac test showed that I have one of the markers for it - I then let him know I had been gluten free for a few weeks when I took the test and asked if that could have skewed results; and he said absolutely so more labs are being done. Again previous doc said I came back totally negative. (I still refuse to believe I have celiac or sensitivity but who knows). 

My first doctor had told me that I had low iron levels. Well apparently that is just the tip of the iceberg - basically I have NO ferritin. My level isn't low, it is non existent. Ferritin is the protein that stores iron, I am anemic but the lack of any in my blood panel is because of the ulcers in my gut as well as right now I am probably not really absorbing many nutrients in general. All ties in with the fatigue, dizziness etc etc that I am experiencing. 

The good news in all of this is that the severity as to which I experience during my current flares is probably as bad as it will get. That was a great source of comfort. While it is definitely not a walk in the park to go through, I am hoping that we can get it into remission and under control quickly if it does flare up again. 

I felt guilty going to another doctor for a second opinion because the first one was so NICE. But, at the end of the day if your gut (no pun intended) is telling you something is wrong, then trust it.  I was kind of sitting there in shock as he went through my results and told me that basically I should have been diagnosed during the colonoscopy. 

So continuing on anti inflammatories, which, have been starting to work so he didn't feel the need to switch, although he did take me off the second unnecessary medication. And besides that wait on the new lab results for now. I didn't want to be diagnosed with a chronic condition but I wish it had happened sooner versus a few years of uncertainty and hell just dealing with it. But, now I know and hopefully will feel normal (whatever that is because it has been so long since I have felt it) soon. 

And feel brave enough to venture from the treadmill to the streets without being scared of what will happen. That, will be a victory. 

Health Update: Still Searching for Answers

It’s been a while since I began yet again on the journey to figure out what the hell is wrong with me so figured I would update! Skip this post if you don’t have any desire to read about my troubles :)

So here we are 5 weeks since I started with my new GI doctor and basically – there is nothing conclusive.

I had the colonoscopy which showed inflammation, ulcers, and a polyp but finally received the biopsy result and he is unwilling to say it is IBD (Crohn’s or UC). On the other hand, the symptoms are too severe to be in line with IBS.

My state of mind right now is frustrated. On Friday when we spoke on the results I had a minor breakdown. After the colonoscopy and seeing just how bad the inflammation was he put me one anti-inflammatory. That worked wonders for a week and a half and then miraculously stopped and all my symptoms returned with a vengeance. I am still taking that but he is ordering another high dose medication to take in conjunction to see if that helps. Both medications are IBD specific since my symptoms are pretty much in line with that. But as he put it, I may be in the infancy of developing it. (Side note: if this is the infancy of IBD I do not want to know what full blown is like because I am miserable already)

I know people are thinking they are helpful – throwing out I should do this “diet” or that, that I am too stressed (but seriously do you know me? I am like the least stressed person ever). The things is, I have been documenting what I eat daily since 2011 (with some missed here and there but it’s a habit now) and my body will respond fine one day to something and then next flare up. Case and point I literally ate the same meals for week’s straight recently and I went from awful to a lot better to awful on the same diet.

I know it is my right to be emotional. It is my health that I am talking about, but sometimes I feel like it could be so much worse and I am overreacting. It is not as if this will kill me. It just makes my life miserable. But I have also learned how to cope. And know where ALL THE BATHROOMS are, life is sexy right now let me tell you. Want to know how fun it is to have to have a side bar with your bosses about why you might HAVE to run out of meetings? Yeah, that is life right now.

I think that was what got to me. I have been coping. Living life around the symptoms. Just got used to "this is how life will be". Then I decided to use the medical route again to find some answers. I scared myself with how not normal it was and thought I would have an answer. The why. And yet as of now, there is no "why". Just a plan to keep things under control. I despise taking medicine. So that is part of what has me upset now; being prescribed various medications, praying they will help but not knowing the absolute cause of all this.

On the upside – I have been back to running and while I feel like hell during the runs I have been making it through them all! It’s like my body knows how much I need it. But I am sticking to the treadmill for now, just in case, definitely too scared to take it outside.

Total downer of a post but kind of bummed out in general. Between not sleeping through a night for weeks and the anemia plus other deficiencies I am tired. I am hopeful this next medication will work and work permanently but it is wait and see for now. After being really upset Friday I am back at a little peace with it all at the moment. Obviously wish there was an answer but for now I will just take some symptom improvement. 

I'm also not sure if I should get a second opinion or not? So new to the whole doctor thing - so if anyone has a stellar GI doctor in the city they would recommend to review my results and history I am open to it to see if I get a different opinion! 

And with that, the end. Happy post to come next! 

It's Not All in My Head

Finally starting to get some answers. I swear I feel like finding a doctor who will listen, seems genuinely invested in figuring out a diagnosis and is not dismissive or medication happy is more than half the battle. 

As much as one does not WANT to have a colonoscopy, I was excited that he wanted one immediately. 

I was scaring the crap (lol) out of myself reading horrors of prep. Minus the fact that the drink has scarred me of anything grape flavored and maybe curbed my salt cravings for a while; let’s just say it was not anything like some of my worst days are. And fasting was surprisingly easy (once I left work that is). 

I waited for an eternity for my appointment. I had arrived the requisite 45 minutes prior for intake and then was finally taken back an hour and a half past my scheduled appointment time. From there it was a breeze as I was soon prepped, put under anesthesia and waking up in recovery. Best nap ever. 

A few minutes after I woke he came back to talk to me. 

And as I suspected, there is a lot going on: proctitis (a lot of inflammation and why I am constantly running to the bathroom), a large polyp they removed (and he said count my lucky stars I needed this at 33 because that is not something you want hanging out until you are 50) and a lot of long ulcers in my colon which could be indicative of Crohn's disease. 

Of course he refused to diagnose anything on the spot – awaiting biopsy, and blood results still. 

He said Crohn’s and my heart kind of stopped for a minute. I know something is wrong and on one hand I feel validated for the findings that they illustrate definitively how awful I have been feeling. But, I selfishly do not want to have to deal with a lifetime of keeping something under control. 

I got home cried for a few minutes and then pulled it together and won't dwell until I see him again and he makes an official diagnosis. 

I know that this is not the end of the world, and I do want answers as well as a course of treatment to help better what I have been going through.

So that is where I am at for now.

Time will tell but for now feel one step significantly closer to finding out what is really wrong. 

I Knew This Was Coming

If you have read any of my posts, follow me on Twitter or Instagram or we are Facebook friends then you at some point have undoubtedly read about my “bathroom woes”.

Long ago I went to a doctor who was super unhelpful and didn’t make any sort of diagnosis.

I’ve continued to go through cycles of torture for the past 3 years or so. Months of being fine followed by months of being in pain and having my quality of life drastically effected (as in must know where ALL the bathrooms are at all times).

Basically this go ‘round started up again the first week of October and has been awful since. This is what I am dealing with (might be TMI but well kind of too late for that!): either constipation or diarrhea, lots of blood, constant bloating and gassiness and always feeling like I have to go. I haven’t been “normal” in the bathroom since the weekend prior to Chicago. It sucks. A lot.

After that dreadful Chicago I made an appointment but work and life kept getting in the way and I kept rescheduling until I finally forced myself to go last night.

I then got quite the stern lecture. I know what is happening is not normal, I mean hello blood all the time, but how many people want to have intimate conversations regarding their gut and going to the bathroom? (okay can’t lie I am very open with my sisters about it but you know, SISTERS).

So she is sending me on my merry way to a new GI doctor and I know I am in for a colonoscopy (does the fun ever end?) and she said most definitely an IBS or IBD diagnosis (which I have suspected for a long time).

We talked about what could be done in the meantime – since most likely post diagnosis they will start me on some sort of drug regime – which leads me to what I knew was coming and avoiding – trying out going gluten free and dairy free for a minimum of 3 months and taking probiotic (align).

I have always maintained that gluten has no issue with me. But then again I have never avoided it. Because, HELLO all the good foods and I know I don’t have an allergy so I thought being gluten free was silly.

But it is time to embrace it. See if it helps. So as of December 1^st (sorry I plan on enjoying Thanksgiving with my family in Florida and have a marathon 11/30 and will eat what I normally do prior #allthegluten) I will go on the gluten/dairy free bandwagon.

I do think I am sensitive to dairy and do avoid it a lot but this time, all in. Sigh.

But first I shall go on a pasta and pizza eating, beer drinking, ice cream consuming binge (and yes I know there are gluten and dairy free versions of EVERYTHING but it is like my last supper – or just an excuse to be a glutten).

And I will definitely be soliciting advice of those who are knowledgeable. I know this isn’t the end of the world but still sad pants.

But the good news is if it doesn’t make me feel any better I can jump right back on the gluten train…March 1^st.