My story

[aubreyl88]

Hi,
My name is Aubrey L. im 23 years old and Ive been recently diagnosed with Crohns Disease. Im confused on what to think still. I just got out of the hospital after spending 10 days off an on ranging from 3 different Emergency rooms and one HORRIBLE ambulance ride.

It all started last wednesday I was totally fine nothing that I recall ever went wrong no symptoms no nothing. On wednesday I woke up with blood diarrea I got ready for work and continued having it through out the whole day. Got home went to the ER and they sent me home (while actively bleeding) with slight anemia and rectal bleeding. The next day I had a appointment that was scheduled prior to all this and the doctor (thankfully!!) checked my blood and called me last friday morning to return to that same ER I left not even 36 hours earlier. When I got there I had to have 2 blood transfusions and was admitted for an upper GI then the following day a lower GI. (I came to the conclusion GOLytly is a LIE). After being there and getting a diagnosis of "inflammation in the small intestines" I go home ACTIVELY bleeding still saturday at 11 pm. I wake up sunday morning feeling like crap I can barely get out of bed and by the time the night was over I couldnt even pick up my son with out being out of breath. I wake up monday morning because I felt extremely nauseated, I stand up walk to the bathroom and pass out.. BOOM I wake up on the bathroom floor on my sons bath toys with a splitting headache throwing up and poo'ing all over myself (ALL BLOOD) and my boyfriend panics and calls the ambulance.. They walk in my house ask me if Im on drugs or alcohol the whole 45 min drive to the hospital.. Pick up paramedics because they cant put an iv in my arm and when they tell my story they laugh.. and I get asked AGAIN if im on drugs and alcohol.. The 3 women dont even bother writing my blood pressures down or even look at the time they are taken.. They dont even bother caring for me. Just laughing how I went to the bath room in my pants (That by far is the most emberassing thing that has ever happened to me, I wish I could sue them) :frown: So.. when I show up at the ER (in a different city from my other 2 experiences) Im in a state of shock my blood level is barely a 6.. and I received 2 blood transfusions, then tuesday I received 2 more.. I had a cat scan.. and met a wonderful GI doctor which my mom called to tell me that I should see the first guy because she heard that my new GI dr was going to let me die. Oh yah, and she said the people I worked with couldnt see me because I had a disease and they would make me sicker. (WTF??) I finally came home last night around 8pm. I didnt see my son since last wednesday.. My arms are completely purple and blue and I have needle marks all over them.

The worst part of this experience other than the ambulance ride is.. Why havent I cried? Is there something wrong with me? I mean I cried yesterday only because I got in an argument with my boyfriend because I wanted to go to a restraunt before we went home. But seriously, is there something wrong with me? When is this going to sync in that something is really wrong??

I was sent home with 5 different meds to be taken daily some need to be taken 3 times and another 2 times. Im constantly nauseated and I havent slept in days.. My head is killing me and my eyes are swollen. Im so confused and scared Ive got no idea.. about anything!! I feel like a lost puppy. Please help me! Thank you for reading.. Im open to all advice.. well pretty much anything you would like to share, I would also like to make friends with similar problems..

I am truly thankful for my boyfriends mom who took care of my son the whole time and all the people who text me and came to see me.. I pray for them and there kindness. :Karl:

 

[Tanachild]

Sometimes, the worst people are the ones you have to rely on for help. Something similar happened to me as well. Went to the ER twice in one day and they still sent me home. They finally admitted me to a hospital after my mom threw a fit. I can't believe those nurses were laughing at you! The nerve of some people!

What medicines are you on? Because some cause slow healing and easy bruising like prednisone. Also, as a symptom of crohn's, you get pain kind of like arthritis. If you are on prednisone, that can make your face swell, like mine looks like I've got a fish bowl on my face.

I hope you get to feeling better soon! It will probably take you a while to recover seeing as how bad you were, but good luck!

 

[dreamintwilight]

Hi Aubrey!

You've certainly been through quite a handful to get where you are now. Sorry to hear that the medical professionals that were suppoed to be treating you and helping you recover did not act professionally and actually made your experience worse than if they had been compassionate and taken your health seriously. Unfortunately, it seems there are places and people like that in many places. It's not the first time I've heard terrible stories like that. It's sad. Makes you wonder how these people still have jobs.

Regardless...I'm glad you found this forum because it helped me a lot when I was first diagnosed and had a lot of questions an worries. It helped to be able to talk to people who had experience and knew what I was going through and could offer great advice and support.

Do you know what the names of the medications you are on are? I know a lot of antibiotics can cause nausea and headaches. Many times those are the first drugs given to people straight out of the hospital until they can get colonoscopies are started/approved for other medications. When do you go back to see your GI? It's important to stay in close contact with them until your disease becomes more stable. Sounds like you've lost lots of blood too, which isn't uncommon for this disease. You are going to be very weak and light-headed for a while until the anemia goes away.

Don't be afraid to ask your doctor tons of questions. Be armed with a list so you don't leave without getting the answers you want. And if you don't feel like your doctor is doing enough for you then you can certainly get a 2nd or 3rd opinion.

Good luck!

 

[aubreyl88]

The hospital sent me home with the following medications: Prednisone 20 MG, Ferrous Sulfate 325 MG, Ondansetron 4 MG, Azathioprine 50 Mg, and Pantoprazole 40 Mg.

I was released friday night. I'm supposed to make a follow up with my family doctor ASAP and make an appointment with my GI by friday. I think I'll have to do another lower GI soon after the visit with him and I believe he said we'll be talking about different medications. But Im not sure/ dont remember.

Do you think he'd take me off any of those listed medicines or prescribe me more?

 

[Tanachild]

I don't think they would take you off any medicines so soon. It would also depend on how well you're responding to the medicines. If you are not responding the way they want, then they could put you on more medicine.

A little advice, when you get a prescription, read the side-effects. When you feel a new symptom, it could be because of the medicine. Prednisone causes a lot of different side-effects, such swelling in the joints and face swells up just to list a few.

I know you may be mad at your boyfriend for not letting you eat, but it's a good thing you didn't because it could have sent you right back to the ER.

 

[aubreyl88]

For the most part my side affects have been the same. Nausea-- ranging from slight to moderate, Tired but cant fall asleep, insomnia most nights, and HORRIBLE nightmares every night. Im not sure if theres anything they can give me to help with any of those things but we'll see when I make my appointment on tuesday. I really dont want to take ambien I dont like the side effects on those, sleep driving?? Thats scary!!

 

[Tanachild]

Keep me updated on what he says. A nausea medicine they gave me is called Zofran. I think it works, but it might not be the same to you.

 

[aubreyl88]

I got Zofran in the hospital. It worked really well.