My Journey

Hello and welcome to the first official blog post of the Chronically Hopeful Life blog! Whether you are a fellow spoonie, or a person who loves another spoonie, thanks for being here and reading about all things chronic illness. I thought I would start off with a blog post about my chronic illness journey and to share my perspectives so you know where I’m coming from. It is a very long journey filled with ups and downs, ins and outs, and good times and bad times, which is a pretty typical journey for people with chronic illness, and, unfortunately, it is a journey that never ends.

My official diagnosis is Crohn's Disease, which, for those of you who don’t know, it is when your immune system goes bananas (B-A-N-A-N-A-S) and starts attacking your digestive system. Most of the time it tends to hang out in the colon but sometimes it can attack anywhere along the digestive tract. That’s why it’s called a disease that can occur anywhere from mouth to anus. Yes, I just wrote the word anus on my blog. So, that is my official diagnosis and it has been quite the journey to get to that diagnosis. Let’s start from the beginning shall we?

I can trace my symptoms back to when I was a kid and I remember having bad stomach pains but I just put a hot water bottle or heating pad on my tummy and then went on with my day. As I got into high school I did start experiencing more digestive issues but they really weren’t that serious. I mean, at least not serious enough to go see a doctor. My main concern at that time, as with most teenage girls, was with weight and acne. You see, I have struggled with acne and my weight since I was 10 years old so that’s all I cared about as a teenager and that’s all I went to the doctor for. I also went to see my family doctor for my periods because those were hella painful. Well, he told me to just take some Advil so I did and that was that. I just thought it is what it is.

But, when I was in undergrad, I started exploring more about different areas of wellness. I started reading this book about dietary supplements and stuff like that and I thought, “If I could just find the perfect concoction of supplements….my life will be PERFECT. I will lose weight. My acne will be cleared up. P E R F E C T.” I really thought supplements would be the “cure” for everything. I can’t even tell you how many supplements I tried. You name it, I have tried it. I don’t even want to know how much money I have spent on supplements at the health food store. Also, at the time I didn’t know this, but the supplement industry is not regulated and anyone can slap a label on anything and call it a day. But me being the young dum dum that I was I kept thinking, “Yeah! Supplements are the answer!” Mind you, I still had digestive issues but still not severe enough to see a doctor. Oh, by the way, supplements didn’t do anything but I still thought supplements were the answer.

I think the best experience I had (*sarcasm*) was when I saw a holistic health practitioner and they recommended colonics for me. If you don’t know what a colonic is, it’s where you lay on your side, they stick a tube up your butt, and they blast water all up in there to blow you up like a balloon, and then drain the water out. Yeah...that was about as fun as it sounds. But I still believed in supplements. Mind you, I didn't change anything about my diet. Not that diet cures anything but changing my diet? No no. Supplements. It wasn’t until I moved to Texas, and I was at my heaviest weight, that I just got sick of it and decided to do something else. At that time I found a poster about a weight loss study being conducted at the local university and they paid you to participate. I was broke AF at the time so if I could get paid to lose weight? Hell yes! Sign me up! They ran a bunch of tests and assigned me a diet and exercise regimen. The exercise regimen was Curves. Does Curves still exist? Does anyone remember Curves? Anyone? Please tell me I’m not that old. *cries in elder millennial*

But, I was still not ready to give up on those supplements. Nay. I didn’t think I was losing weight fast enough so I ordered these sketch weight loss supplements online. I don’t recommend this. Please don’t do this. Don’t be like me. Don’t take sketch supplements. So, I did take those for a period of time but I also followed the protocol. I did lose weight but my health symptoms, while still not bad, weren’t gone by any means. At this time though, I was thinking that maybe, since I did see improvements with diet and exercise, that maybe it was still my diet. Enter the gluten-free craze. Now, some people do need to be gluten free for Celiac or Non-celiac gluten sensitivity but everyone and their mother was doing gluten-free for weight loss. So, during this craze I thought, “Yeah! Gluten is the answer! Gluten is the devil! I just need to give up gluten and everything will be fine.” I was also looking to clear up fatigue at this time in addition to everything else so I gave up gluten. I was gluten-free for 9 months and, to be honest, it didn’t cure anything at all. So, I started eating it again.

Then all hell broke loose. This is when shit hit the fan (pun intended) and I started to experience very bad stomach pain to the point where I was white knuckling it, I had more urgency to run to the bathroom, and I would be doubled over in pain. Up until this point I didn’t have health insurance at all (which is another reason why I was trying supplements and diet but that’s a topic for another blog post); however, I did start a new full-time job and finally got some health insurance. Finally, I was able to go to a primary care physician and she referred me to a GI doc. This is when I had my first colonoscopy. If you don’t know what that is, I envy you. They really need to come up with something else for us poor souls who have to go through colonoscopies on a regular basis. You can’t eat for 24 hours and you have to drink this NASTY prep that cleans…..you….out (if you know what I mean). Then you go in, they put you under, and then look into your insides, primarily the colon, with a camera. I got done with my first colonoscopy, I was waking up from anesthesia, and my doctor simply says “It’s Crohn’s.”

Crohn’s. What the heck was that? I always thought I had IBS. I wasn’t given any further information so being the Google Doctor that I am, I looked it up and after reading about my symptoms I didn’t really “see” myself in this diagnosis. I didn’t really have the traditional symptoms. So, I went to my follow-up appointment and I told the doc that I wasn’t experiencing any of these typical symptoms and here is what she said to me. “I don’t think you are a complainer. I think what you are experiencing is worse than what you are reporting” and just dismissed what I was telling her. She also wanted to put me on a medication that was $750 PER MONTH! When I told her that the medication was out of my price range she just said, “Well that’s odd because it says your insurance covers it.” So, in addition to dismissing me (I mean, to be fair she was right, I’m not a complainer, but still…) she didn’t sit down and explain anything to me or help me get medication in any way shape or form. Because of that, I left and thought, well, if you aren’t going to help me then I’m just going to go fix myself.

That’s when ye old trusty supplements came back in. Off I went to see another naturopath and she photographed my eyeballs (yes, that’s right, eyeballs) and told me what was wrong with me just by looking at close-ups of my eyeballs and she recommended a bunch of supplements. Now, mind you, this “exam” and all of the supplements were by far cheaper than going to the doctor, obtaining the necessary tests, and the ridiculous cost of medications (again, another post for another day). I took the recommended supplements and this was also the time when Crossfit was all the rage and everyone was promoting Paleo with the promise of being able to eat all that you want (but Paleo of course) and you will be perfect and cured of everything. So, I went Paleo. It did help for a bit but nothing was cured by any means. Then, after Paleo came veganism. Ah, being vegan. If I just went vegan I would be cured of everything and I would turn into the perfect picture of health. Do you see where this is going?

Yes. Yes I did. I went vegan. For two years. And my health symptoms got worse btw. My digestive issues got worse and the acne blew up. I had cystic acne all over my face and I was losing my hair. But it was supposed to be your body detoxing right? Right. So I just persisted and kept at it. For two years. My health issues never got better. In addition to the above, I experienced really bad bloating. It was so bad. I was uncomfortable, it was painful, I looked pregnant, and people kept thinking I was pregnant. So, I went to another GI doc and we went through the same crap (pun intended again) and after the second colonoscopy there was still inflammation in my colon. Nothing had changed. I also had a genetics test done and the results came back that I do have the genetic markers for colitis but it was undetermined as to whether it was Ulcerative Colitis or Crohn’s. During my follow-up, the doc diagnosed me with Undetermined Colitis and I asked him what do we do now? And, I kid you not, he said…”We’re going to wait until it gets worse before we do anything to treat it.” Sooooo…..you’re just going to let the inflammation run rampant and EAT AWAY AT MY INSIDES and wait for things to get WORSE before you will do anything. What kind of medical professional says that? Needless to say, that was my last appointment with that doctor.

Yet again, I still wasn’t ultimately convinced that it was Crohn’s or colitis so I was still holding out hope that I would find supplements or a diet that would help me. I cut out gluten again and I trekked into a Functional Medicine doctor. She ran a bunch of tests that came back with a bunch of food sensitivities and put me on a bunch of supplements. I took the supplements and changed my diet and…..still did not see the results that I wanted, still had symptoms, and still no cure. Well, I got a new job which came with different health insurance that was faaaaaar better than the crap insurance I had previously and went to see a third GI doc. He ran a battery of tests. Bloodwork. Stool sample (a very humbling experience). Yet another colonoscopy. And the diagnosis was Crohn’s disease. But, unlike any other doctors that I have had, he and his medical team sat down with me, spent time with me, answered my questions, and explained everything to me. It wasn’t until that happened that I realized, okay, this is what I have. For so long I have tried to run from this. I have tried everything under the sun to run from this. But I couldn’t run anymore. I had to come to terms with the fact that I have a chronic illness. Don’t get me wrong, there were a lot of emotions and a lot of tears but it wasn’t until I had a medical team that took the time to make sure I understood everything that I could finally move forward with treatment.

Now my treatment consists of Humira, which is a biologic and I also took a two month course of Prednisone, which was super fun. I blew up like a blowfish. But now it’s just Humira and at my last colonoscopy, the inflammation is still there, but things are healing and I am currently on my way to recovery. And that is what it is for now. It took me ten long years to get here and my journey may continue to be up and down. I may not always be healing. I may not get into and maintain remission. But this is where I am at now. Do I still modify my diet? Yes. Do I still take supplements? Yes. But I am under no false pretenses that these will cure anything. These things merely help with symptom management and what I do will not work for everyone because everyone is different. Also, I have now come to terms with needing to manage a chronic illness for the rest of my life. If they ever come up with a cure, great! But if not, well, then I will manage. This is my journey. I am sure you all have your own stories and journeys. Hopefully the story of my journey helps someone in some way even if it is just so you know you are not alone. Thanks for coming along on this journey with me.