Where to even start on this? I live with an incurable disease called Crohns but my journey to this was nothing easy and pretty traumatic if you ask me. I first got diagnosed with Ulcerative Colitis when I was 21 but, honestly, I probably had it long before then. I think I was in denial about it as I literally had stomach and bathroom problems for a very long time but it’s not something you really want to share right?!? Well it finally took a turn for the worse when I was about 21 and ended up in the hospital the first of many stays at the wonderful Cedar Sinai, I like to call it my second home! Once I finally had a diagnosis or what I thought was one, it was a let’s try this medicine and see what happens. Well I am one of those patients that nothing ever goes as planned. It was a pattern I would have a flair and end up in the hospital for a few days get massive amounts of steroid and then go on my merry way until, that was no longer the case. I had been working a very high stress job which for the disease I have is pretty much a death sentence for it. I had gone to Las Vegas with my boyfriend at the time and didn’t feel great there but checked it up to the fact that I was dehydrated and it was Vegas. I came home form that trip and literally slept 24 hours and called in sick to work, which I never do! I could barely function. I then decided after sleeping for 24 hours it was time to go to the doctor; Honestly, I don’t know how I drove myself all the way there, but I did! Once I saw the doctor, he took one look at me and after several attempts to get an IV in me which was impossible he said, I am checking you into the hospital.
Once checked into the Hospital I didn’t leave there for about 6 months. I had an extremely high fever, the pain was so intense, and thankfully I don’t remember much other than the dreaded words SURGERY! They had done every test they could, and countless teams of doctors had been on my case, they decided surgery was the only option. It was supposed to be the cure and for me to be able to get back to life as a normal human would. Well I had the surgery where they remove the entire colon, which is a pretty extensive surgery. It’s a 2-part surgery as they remove the colon in the first one and create a temporary ostomy for a couple months then they create a J pouch and remove the ostomy. We’ll let me tell you it’s one of the hardest things I have ever dealt with in my life. The pain is way worse than child birth. Unfortunely for me the surgery didn’t work, anything that could go wrong did! I had abscess, and the list goes on and on. After months of having the ostomy, it was time for the removal of the ostomy and the J pouch surgery. This is where it took a turn for the worse, the pain was of the charts where they ask you tell them a number between 1-10, mine was a 100. More test was done, and this is where they told me you know have Crohns! I was like wait a minute you told me I would be cured with the surgery. I was one of the people that it didn’t work or where you end up getting Crohns after the removal of the colon which is UC.
With this new diagnosis, there was a problem as most people who have crohns do not get their colon removed as it does not work that way, so there was a chance now that I would have to live with permanent Ileostomy instead of the internal J pouch. I started to breakdown, I had a really hard time with the ostomy as your life changes, the way you are taught to go to the bathroom is no more, you now have a bag attached to your stomach where you now poop. You don’t go to the bathroom like you were taught. They then decided we needed to start a biologic drug which is done in the cancer center. The first time I walked into this place I was in a very dark place and to be honest it was depressing. I started the drug called Remicade, I was lucky that I didn’t have any complications with this medicine or side effects. The dose was every 8 weeks, that was not working, so we went to every 6 weeks, that was not working so we went to every 4 weeks. This seemed to be better but still in a lot of pain and many complications with trying to live a normal life. I went to every doctor under the sun and which felt like a very long time I basically had confirmed that this how I was going to live life and adapt to it. The mental toll this disease takes on your life is whole another story. Every 4 weeks I went to get my infusion and in this time I really grew to love the cancer tower, I meet the most amazing people and connected with one lady who sat next to me. She had an ostomy but for different reasons, she had cancer that had almost killed her, and her colon burst and had to be removed. It was so nice to connect with someone who also had an ostomy and knew what it was like to live like this. She was the reason I was able to get out of my funk she helped me see the good in life and how get out of our own negativity. I thank her for what she did for me and I will never forget it.
I then became Pregnant which I was told after my surgery it was highly unlikely and very complicated if you do become pregnant. I was shocked when I found out I was pregnant and scared to be honest as it can go one of 2 ways; really great or send your disease into a disaster. I was one of the lucky ones, it was the best I had ever felt since having this surgery. I was high risk and had to have a C-section but other than that she was perfect and I was healthy. I am so grateful that I was able to carry my daughter without any complications. The day I found out I was pregnant was the day my friend that I had meet form the cancer died, unfortunely her cancer was to aggressive and she was gone.
Fast forward to after having my daughter the disease came back with a vengeance and was no longer in control, my daughter was about a year old when I ended up in the hospital and they conducted their test where they found out that Remicade was no longer working and it was time to look at other treatments. That’s when they choose Entivyo which like remicadde goes in through IV every 8 weeks, that didn’t work so we upped it to every 4 weeks and it is working till this day! This is huge, I just had my scan and no active disease.
So, to this day we are still here on this medicine and living life again!
The one thing I wish I knew before having surgery is that no one told me about the bag and how to live with it, One thing for fashion it’s a whole different ball game, I WISH I NEW ABOUT MATERNITY JEANS! I am telling you that it would have been so much easier to feel comfortable and hiding my bag! I literally hated going out because of my bag and shame I felt when people would stare at me! So, if you have a bag and want fashion that makes you feel great get on the maternity jeans it’s a game changer.
