#livingwithcrohns

[carnivorousvagina]

I’m  26 years old and I have arthritis and irritable bowel disease. dont do drugs kids. not to mention cptsd.

[tripasparaligas]

Sadly it is not a happy anniversary for me. I am off for infusion and then on to emergency as I have developed a perianal abcess.

[fuzztv-blog]

#injectionday #injectionday💉 #crohnsulcerativecolitis #crohnsdisease #injections #humira #humirainjection #humirapen #humiraday #livingwithcrohns (at Braxton, West Virginia) https://www.instagram.com/p/BqcvWZ-l_Eb/?utm_source=ig_tumblr_share&igshid=15gr3zf3vzf5h

[bshamilton]

It's spring so here's to all of us blooming into the greatest flowers that we could ever be ♡♡ #flowers #blossom #blooming #spring #springfever #icanfeelitinmypants #positivevibes #livingwithcrohns #crohns #fighter

[the-motherhood]

I have published a post on my blog about one of the many instances where I have had to try and second guess if I need medical help due to the pressures that the NHS is under. I would love it if you could take a look and leave your thoughts. #crohnsandcolitisuk #ibdwarrior #nhs #livingwithcrohns #ibdandme #mentalhealth #blogpost #doctors #chronicillness #spoonie https://ift.tt/322TMn0

[queenbeeofibd]

A regular view in the life of crohns, long waits in a nearly empty waiting room. Here to see a surgeon and hopefully get the ball started for this surgery to be done. In meantime life is waiting game, take a seat #crohnstakesguts #livingwithcrohns #crohnicillness #chronicallyfabulous #crohnsdisease #mylifewithcrohns #hospitallife #waiting #waitingroom #hospital #crohnsainteasy #ibdsuperheroes @Regran_ed from @lifehomecrohns — view on Instagram https://scontent.cdninstagram.com/vp/672f86044b875c5158b661aa8be582c4/5CA840B7/t51.2885-15/sh0.08/e35/s640x640/46592512_2111038712267730_3865696244123078726_n.jpg

[coachfleuryfitness]

I've got a puppy 🐕 who wants to play but little does he know, its workout time!! CoreDeForce MMA Power!! It's NEVER easy, it's never conveinant but man is it worth it!! 😃 #workout #youareworthit #mondaymotivation #Decemberstrong #CoreDeForce #MMA #puppyproblems #coaching #CoachFleuryfitness #fitmom #fibromom #livingwithcrohns #health #fitness #loseweight #weightloss #instagood #followme #repost (at City Of Aledo)

[sassy-unicorn-mermaid]

Ugh, I’m in so much pain

Because my intestines suck at being intestines.

[crohnsucks-blog]

[queenbeeofibd]

Thanks for the moon and the stars up above, forgiveness of sin and your undying love, every twist every turn for the way you made sure all my roads lead to home THANK GOD FOR THIS WOMAN AMEN! • • I can’t help but think of my mom every time I hear this song. And it’s so true, she has never treated me different because of IBD and because of that I have so much strength, she has always showed unconditional love and is the queen of hope even when you think it doesn’t exist (which is often when you have lived with Crohn’s for years). So tonight I thank God that He chose you to be my mom. • - shared from @crohnically_awesome • Cheers to all those who know how lucky they are to have someone who gives them strength, faith, grace, hope and love 💕 #forevermommasbaby #mothermary #shesasaint #lifeline #livingwithcrohns #crohnswarrior #crohnssucks #support #familyiseverything #ibdsuperheroes #purplewarrior — view on Instagram https://scontent.cdninstagram.com/vp/ded9591917c702e4f08149c20f33392d/5BB02887/t51.2885-15/s640x640/sh0.08/e35/33567720_2092915600950605_1642542111288983552_n.jpg

[crohnsucks-blog]

You know you've been to the hospital too many times when you know better than some nurses.

There are some AMAZING nurse's out there, but there are some nurse's who should have never become a nurse! Unfortunately, Crohn's patients experience many of those. :/

[crohnsucks-blog]

[crohnsucks-blog]

[crohnsucks-blog]

So, I left off where the two nicest EMS drives in the entire world transferred me to Mt. Sinai hospital.

I say that they are the nicest guys in the world because the horrible staff at the hospital that I have been previously at had marked me down as a "psychiatric" patient, which I had NO idea of. This meant, that I was being brought to the psychiatric part of the hospital.

If you have Crohn's, you know what it feels like to have someone tell you-well you don't look sick. "It's all in your head." etc. Experiencing it from the medical profession is a whole new level of hurt.

My mom sat in the front seat of the ambulance as I lied in the back with the other EMS driver. He was playing chess and asked if I wanted to play. I didn't want to because I felt horrible-(plus I suck at chess! haha.) So he went ahead and played the game without me. He was saying the funniest stuff and I just kept laughing. I felt my spirit lifting just by being in that ambulance with him. 

Little did I know that my mom was having a full on conversation with the driver talking about how the hospital had directed him to take me to the psychiatric unit. My mom was already pissed off, but after hearing this, she was beyond furious. She started to scream, hence how I found out what was going on. The EMS driver in the back, turned to look at my mom & the driver and said as bluntly, "She's not crazy! Trust me we've taken crazy people in an ambulance before!" They both laughed a bit, but I was now beyond scared. The EMS driver told my mom that he wasn't going to listen to the hospital and just take me in through the regular entrance. My mom explained everything that had been happening in the hospital to me and they both seemed disgusted. They had seen many other patients with Crohn's being transferred to Mt. Sinai and had seen people treated the way I had been and they weren't going to stand for it.

We got to the hospital about 45 minutes later. EMS drivers are kinda hysterical when it comes to driving in NYC. I have a new found respect for that loud noise and crazy lights. These people who drive our ambulances, truly care for the patients they have in them.

We arrived at the hospital and in no time at all I was admitted. City hospitals are very different from Westchester County hospitals. If you don't have a private room, no one can stay with you. The woman who I had been roomed with, had Colitis. She had it so bad that she was in and out of the bathroom every 5 minutes. She was vomiting and everything else in between. My heart broke for her, but she also had walking pnemonia and anyone who has Crohn's or Colitis knows-your immune system SUCKS!

We also lived in Westchester so traveling back and forth was not going to be an easy task for my mom.

I was very lucky at the time. My mom made it her business to get me a private room so she could stay with me. If anyone has ever heard of Eleven West at Mt. Sinai hospital-that is where I stayed. It's like a hotel, but you get hospital care. It was amazing and I still feel so blessed that my mom cared so much to make sure I was comfortable and safe. 

Since it was so late at night, no doctor from the GI team was able to come access the situation. They started me on fluids and gave me my prednisone that I was on at the other hospital and pumped me up with pain medication to help me get through the night.

In the morning, I awoke to who I consider my saving grace; Dr. Elana Maser and her team. I am a Catholic and my faith has helped me get through a lot of my troubles, and I truly believe that God set me up with Dr. Maser. This was a woman who understood what I was feeling. She understood how bad the pain was and how prednisone was not my answer. She didn't go over what other doctor's had done. She had already looked at all of my charts/colonoscopy/endoscopy and she had a plan! She started to slowly lower the prednisone and explained to me that I had gained the weight that I had because of it and the roundness in my face was something called "moon face," which you get when you're on prednisone for a long time. I had been on it for three months. 

She immediately explained to me that steroids were not the answer for me. She also thought the amount of pain meds I was on was ridiculous. She immediately put me on a liquid diet. She slowly lowered the pain meds and got me off of them quickly! I realized very quickly that not eating, made things so much less painful! I was off the pain medication & prednisone in just a few days! 

The new plan was Remicade & 6mp. Remicade is an infusion that lasts 3 hours. They pre-medicated me with tylenol & benedryl. She explained to me that being on both of these drugs would help me tremendously. I had my first infusion in the hospital. I felt immediately better and could was able to keep down soft/low fiber foods.

I was sent home to rest with the prescription to have my next infusion 2 weeks later in the infusion center on the 11th floor of the Mt. Sinai faculty practices building.

I felt like I had finally found an answer! I felt so lucky! I went home right before my 25th birthday and I was able to have a little party with my friends. My mom & sister decorated the kitchen and my mom gave me a necklace that had been hers. I had bruises all over my body from all the tests/shots/iv's and I still had a "moon face" and the weight I had gained on prednisone. But at least I got to be home with my family & close friends!

[crohnsucks-blog]

2nd Humira Injection Post Op Day. 

Last night my joint pain was SO bad! I can't take anything but tylenol (which does NOTHING!) Whenever in rains or snows I know I am going to be in excruciating pain! :( To say the least, it rained a lot last night. :/ So here's hoping for some relief asap!

Also, started to drink miralax every single day with meals-and the pain in the tummy issue is getting much better! (Also taking 2 extra strength gas-x a day!!)

So glad I didn't need a hospital visit!