FIX ERRORS BEFORE POSTING!
Well I’ve finally been given a diagnosis. A part of me is so happy to finally have an understanding of what’s going on. Not to mention how great the feeling is to get meds to feel better. The unfortunate part is my diagnosis is for life. So the hopes of feeling better are for bursts of moments and not forever like I had hoped.
I guess it’s time to share my diagnosis…. On November 23, 2017 I was diagnosed with an autoimmune dissorder, IBD (Inflammatory Bowel Disease) more specifically Crohn’s Disease.
I guess I should share everything. I don’t plan for anything to be overly TMI and I won’t be sharing pictures. However if you want more information and what not I don’t mind sharing. I just know that sometimes talking abouy your GI tract isn’t always the most enjoyable.
Let me start with saying everyones “normal” is different. On average a “normal” BM (bowel movement) habit is roughly a soft but firm BM 1 time a day. There shouldn’t be pain, blood, stomach cramping, excesive diarrhea, or excesive constipation. (Obviously things vary when sick, with certian foods, meds, etc). For me my “normal” had always been 1-2 times a week even as a young girl.
But then about 3 years ago I was noticing a difference. I was having a BM every other day if not every day. And several times a week I’d have 1 or more (usually all) the symptoms you “shouldn’t” have. So I went in to see a doctor. Because this wasn’t happening often and it wasn’t affecting me to much my doctor said it was fine and I was probably fighting a bug or my body is just changing as I grow. He also said maybe it was my diet and exercise. So in the end he sent me home with the reassurance all was fine.
But over the next year things got worse. I also experienced a miscarriage and life was just changing for me. I now had a new doctor as I had moved across the country and was now living with my husband. This doctor listened and thought maybe I should see GI and a nutritionist. He figured it probably wasn’t a bug but maybe it was IBS (irritable bowel syndrom). He also thought maybe I wasn’t eating properly and needed someone to teach me how to eat better. (Is there a pause button? Let’s pause for a second. Two things. 1st I was told my Crohn’s probably didn’t cause my ectopic pregnancy. 2nd I was eating very well. I wasn’t eating out that often, I had multiple salads a week, fruits/veggies every meal, little carbs/sugars. I was eating pretty well. The nutrionist actually said so. Okay un pause).
So after waiting 2 months I was FINALLY approved and scheduled to see a gastroenterologist (GI). (Also I have tricare and am seen by military doctors. No clue if that makes a difference but I have noticed some things take what feels like years with military doctors/tricare). To me seeing this doctor was a bust. His exact words were “You remind me of my daughter. You’re so healthy and young! Don’t worry just eat those leafy greans!” Yeah his medical opinion that I was going there for was I look like his daughter. Now in all honesty I was about to activley try and get pregnant again and that meant doctors don’t really want to start anything new. More specifically doctors want you done with children as they don’t really want to give you a lot of meds (even if “safe”) while pregnant. Plus pregnancy can change a lot of things.
So fine I wanted to get pregnant I guess that makes sense to hold off. I could deal with that. And honesly even though things felt like they were getting worse I was actually still doing really well. Living a “normal” daily life.
Fast forward a few months and I go back to my doctor and share with him that I still feel horible. It had actually gottem even worse. But it still wasn’t running my life. And I could still keep my normal activity. He ran a few test all coming back fine. So again I’m told it’s all normal and not to worry. He told me the GI I was sent to is great and he stood by his ruling. Okay so now I’m starting to feel a little concerned more is going on and no one is really listening to me. I’m not one to go to the doctor often so at this point I had gone over my limit for 5 years worth of doctor visits. I wasn’t great at advocating for myself so I just went home. And kept living that “normal” life.
But all this was put on a back burner because I was just cleared to start trying to get pregnant again. So pregnancy was on my main focus and I was so excited. It took 2 months roughly and finally it happened. I was pregnant! (I got pregnany July 2016). All was great! But then by the time I got 2 months (roughly 8 weeks) all my symptoms came back and I was constsntly having BM’s. You’re going to say “Marena that’s just pregnancy.” But honestly it didm’t feel like “just pregnancy”. Younknow the saying “trust your gut”? Well that ism’t dfar from the truth. You should trust your gut. To me it just didm’t completely normal. But just like you’re probably thinking those are the exact things mh OBGYN said. He said it was normal to experience those symptoms while pregnant. Again I put my concerns asside because I trusted my doctor. I focused om the joys of pregnancy. On March 9, 2017 I had my beautiful daughter.
Almost immediatly after having my daughter though those symptoms came back like crazy. It was enough my mom convinced md to make another doctors appointment. (My mother was staying with a short while to help out). Again my doc said all was normal and not to worry. Plus I was about to move in a month and it was probably better to wait untill I was settled in my new area to have good care. Made sense.
Then just as we were leaving Cali to head to Hawaii all of us got sick. My husband and mom fought it off like a breeze but I wasn’t so lucky. I would go on to find out I had E.Coli un diagnosex for 5 months. I’ll get to that part later….
Not only was I feeling sick again I all of a sudden started getting these weird red/bruised spots on my foot, knees, legs. They were hot and sore to touch. I also had a red eye but it wasn’t pink eye or allergy eye. At first we thought it was a bug bite reaction and ignored it. Mom, Dad , grandma/mom/MIL, dog, 5 week old, lots of luggage and sickness in tow we made the treck to Hawaii. Off on a new adventure with the military.
So wd are in Hawaii not even a while 3 days when I do to the ER. The spots had gotten bigger and my joints had gptten really stiff. I was actually having a hard time walking. I was so miserable and didn’t know what was wrong. So at the ER they said it was an allergic reaction to some kind of spider bite and sent me home with prednisone. All is good right? Well not so much.
I took the prednisone and was feeling great. The pain and redness went away and I felt like an new woman. Problem was the minute I was done taking the steroid the red spots and joint pain came so much worse. Within just a few days I hurt so much I cried anytime I needed to stand up. I cried because I had to give everything in me to take care of my daughter. So I made an appointment with primary doctor and went in to see him immediately. So immediate actually that when the nurse mumbled to herself “You can’t get here in 10 minutes” I quickly said “YES I CAN! I LIVE A BLOCK FROM THE CLINIC!” (We live on the military base and we really do live just a couple blocks away). So we loaded up as quick as possible as we could. Met my doctor and I instantly loved him.
Now right now we don’t discuss my stomach issues because they were still on the back burner. I didn’t necessarily put two and two together they may be linked. So he gives me a longer course of steroid and schedules me to see an autoimmune doctor (forgive me the title has momentarily left my brain) and dermatologist. Because after seeing the spots and hearing what was wrong and calling the autoimmune doc they agreed something wasn’t right. They prescribed me more prednisone but this time it wasn’t a 5 day med it was a 12 day med.
Again I felt great. When the med finished up the spots came back but I wasn’t sore or in pain. At least not right away. However my stomach issues were still happening pretty bad and I had started losing weight. I went from 100 poumds to 92 pounds in roughly a month. Then I asked my doc to send me to a surgeon because I want to get my hemorrhoids removed. These were not caused by pregnancy. I had them before. But with my stomach issues they had gotten huge. While in surgery I would later find out they found a type of ulcer that signnals crohn’s. (We’ll get back to that).
Alright I’ll leave you here with part 1 since it’s getting so long. I didn’t think it’s take long but once I started writing I realized there was so much more to say.