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Crohn's Disease
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Posted 9/19/2016 6:00 PM (GMT 0)
It all began when i woke up saturday at 3am in severe pain. It hurt so bad under my ribs on the right side. I kept hoping it would get better throughout the day but of course it didnt. If i took a deep breath the pain got worse. Well at 7pm i finally went to the er. They took me straight back to a room. Which led me to believe its something serious. After an ultrasound and ct scan they couldnt find a cause for the pain. So they sent me home at 320am even tho i was still affected by pain meds
(dilaudid) and no sleep in 24 hrs. I was not able to safely drive home.(its a 35 mile drive). The nurse said the hosp was not a hotel and i had to leave. The parking vallet told me to sleep in my car. Which i did til 830am. I was in severe pain again and was not going home without an answer as to why. Do i drove 30 more miles to a better hospital. They were much more thorough. Good news is my gallbladder and liver are fine. They believe they found the source of my pain. Since i have inflammation in my hips due to crohns they think my crohns is also affecting the cartlidge in my ribs whi h is making it difficult to breathe a deep breath due to pain. I have to take prednisone for a couple of weeks. Hopefully it will help. The dr also mentioned a possible blood clot and if i start having trouble breathing to go back immediately. I hate having crohns. Is there anyone out there that is dealing with extra intestinal manisfistation? Please share your story.
Posted 9/19/2016 6:23 PM (GMT 0)
Hi Bucko, Thats absolutely terrible! Are you still in pain? I have a whole lot to say but I'm late for work so i cant type much. all i can say is i had a blood clot/ pulmonary embolism in may of this year and my doctors told me i was lucky to be alive. if there is any chance it could be a blood clot you need to push for a Chest CT. it took me several er trips to find the cause of my pain too and finally my pcp convinced the er doc to do a ct and they found it. definitely should have one to be thorough and not miss it because it can do a lot of lung damage if not worse if thats what it is. hope its just inflammation though.
Posted 9/19/2016 8:20 PM (GMT 0)
The er dr wanted me to follow up with my pcp today or tomorrow. So i called them to schedule an appt. They said the soonest they could make me an appt would be next wed. With the nurse practitioner. I took the appt but now im in search of a different pcp. Also my eye wont stop tearing. Ive been on steroid eye drops for 2 weeks now and its worse. I woke up with eye matted but the eye isnt red or itchy.i guess i need to see my eye dr again
Posted 9/19/2016 10:08 PM (GMT 0)
Ack! I think you should go back to the ER. Now I see you said you had a ct at the first hospital. I don't know seems like you have a lot going on that isn't worth waiting for an office visit even though they sent you home. Can you talk directly to your pcp to see if they will give you an appointment sooner? That's what I have always been told by my docs if I have a severe problem. What made the doctor suspect a possible blood clot? Anything other than the pain? Blood work? Considering the severity of pain That comes with crohns, I though I could push through the pain I had with the PE before I knew what it was and it started waking me up at night.
Posted 9/20/2016 7:07 AM (GMT 0)
I now have one more thing to add to my list. RECTAL BLEEDING!!! I swear what else is going to go wrong with me. I was planning to do so much as i got older and now im stuck in this run down body. I feel like a failure to my husband and my family. All i do is complain all the time....but by golly im in pain all the time. Sorry for ranting. Im just frustrated.
Posted 9/20/2016 6:56 PM (GMT 0)
Going to an ER is quite expensive in the US, unless you live in Canada. What you described in your story is real and saddening. I would think the better option (if you are in the US) is to choose a good GI doctor and follow up. Ironically, I do not have a GI doctor, as I am using alternative medicine.
Posted 9/20/2016 10:31 PM (GMT 0)
Hi Bucko. Too tired to say much, but I sympathise. Hopefully it won't always be this crap and you can do all the stuff that you wanted to do.
Posted 9/21/2016 4:36 AM (GMT 0)
so this article and thought of your post.

https://themighty.com/2016/09/what-doctors-should-tell-you-about-grief-with-a-chronic-disease/
you're doing the best you can and waging a difficult battle. I feel the same way a lot of the time. Crohn's is tough physically and emotionally. give your self time, you will be able to many of the things you hoped to do, just maybe not when and how you expected.
Posted 9/21/2016 2:21 PM (GMT 0)
i finally got an answer. An answer to why i hurt sooooo bad everytime i breathe. I have costochondritis. Inflammation of the soft tissue around my ribs. This can be caused by different things like coughing to much, strenuous activity or arthritis. And arthritis can come with having crohns. So now i need to see a rheumatologist. I wonder if i will always have this pain. Ive have totally had a downhill ride since i came off the entocort. The pcp put me on 12 days of predisone. I tried taking flexeril but developed a rash. Im allergic to a lot of meds.
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