Finally Dealing with My Disease

I have a disease? Your kidding me right?

For so long I have had this lingering thought of river-denial. Even though I have a Medical background as a EMT-Paramedic, since my diagnosis in January 2006 I have been ignoring the Crohn's brewing in my RLQ. Trust me the crohn's has made itself un-ignorable these days, finding myself midstrife of a 5 month flare/reoccurance.

Let me reflect on how I found out about my Terminal Illeitis:

One day January 24, 2006 I found myself below the weather, and let me just say I'd soon be on the floor doubled over in pain so severe that I was diaphoretic(sweating) and crying. I was vomiting everywhere and had a high fever of 101.9. Horrible RLQ pain that had a positive chandiler sigh when touched I'd jump to the light fixture hanging from the ceiling. My friends feared the worse (appendix and so did I) that I was placed in the car and driven to the nearest ER, which was 45 minutes away at the time. (North Carolina).

Obviously I was very sick, my white count on CBC was 23.7. The docs to one look at me and called in the Surgeon and the plan was to get the ACUTE APPENDICITIS out of my belly before I ruptured. Ok no big deal right?

WRONG!!

Upon opening me up they found the Appedinx quite underwhelming to say the least. Good thing they removed it anyway. Upon further investigation my Terminal Illeum was Grossly, Reddened, Thickened and Inflammed to the point of boderline resection! It turned out that I had Acute Terminal Enteritis.
So much for this being over.....the event had just begun.

When I awoke from anesthesia, the new was given to me about my friend Crohn's and that was it, no one explained ot me anything, prepared me, instructed me for the future that is today.

In fact I avoided the issue completely, not realizing that I had been having RLQ issues most of my life and had been admitted numerous times for suspected R/O Appendicitis.

During the first year I had the occasional burning and diarrhea that goes with the gift but nothing had been done to prepare me for the last 9 months and the situation I am in now today.

Since July 2007 I have been in the Hospital 76 days, I just got out two days ago from a five day admission, and another acute flare. God do they suck! Mostly what chaps my ass, is the huge difference in the way medical personel treat me, judge me and act when I seek out relief from such a illness. Continuity of care and having physicians agree on treatment protocols, something I have found not to exist. Compassion has been lacking in my care alot lately.

In the last 5 months I haven't been Pain free at all, period!! I constantly have this sword in my RLQ cutting my intestines to shreds, seriuosly I have dreams of this very vision all the time, I never thought that I'd suffer from chronic pain!!! I ever had one Female Internest(MD) tell me on an admission one month ago that I don't know what pain is, what I was feeling in my RLQ was acid reflux and she told me that I wasn't getting anything for pain relief, seriously they wouldn't give me anything for abdominal pain, not even Toradol!!!! She ordered Protonix a new Gerd treamtent! Then she was telling the ER staff to discharge me home! She even went as far to tell me that I don't have Crohn's! The funny thing was, a few minutes later my CBC came back my white count was 17.3 and the CT scan confirmed a swollen terminal illuem!!! I fired her on the spot! What fool! Yet this seems to be the normal presentation of Emergency Room Physicians, a majority of them have NO exposure to the illness/disease and then when someone comes in having a real presentation, and state I have this severe pain, all they can think is YOUR A DRUG SEEKER!!! Its pathetic beyond belief!

Lately it has been hard to find medical staff that actually respects and has compassion for the dibeliatating issues of crohn's for me, which is Serious chronic pain, sometimes I am on a dilaudid PCA, it can get that bad!

The thing I am starting to realize is that I am carrying this sword of crohns and I do have a disease, which was hard for me to admit, but its kind of hard to miss when I have 10-20 bouts of diarrhea somedays, plus the horrible Nausea, vomiting and of course the CRAMPS!. Just lately the G.I. guys wanted me on Remicade, yet with the side effects from that I demanded trying a change in oral maintanece meds before I go that route. I am on Budesonide 9mg/day for the next 6 months, Pentasa 4g/day (forever I suspect) Donnatol and Bentyl as needed. Tramadol 50mg-300mg/day for mild-moderate pain and Norco 10/325 when I get to uncomfortable which is all the time lately. Last My PCP and I agreed that the crohns and chronic pain has taken its toll on my mental stasis and I am on Cymbalta for Chronic pain issues.

Now I could really use some knowledge about augmented therapy and holistic ways to alleviate this sword in my side, my flares have become one long one and I am worn out and need a release of this from my life.

What can I do? Does anyone else have depression from constant pain? How do you deal with the effects?

Ohh BTW Hello everyone!! I look forward to learning knowledge about something I denied I have for 2 years, my disease!

Living with the Sword of Crohn's!

I hope you all are blessed with remission.....

I think a lot of us can relate to you. It also took a mental toll on me as well and I am currently in therapy for it. I currently have 3 autoimmune diseases which is included in a total of 5 incurable diseases. Add those with a pink haired girl in her late 20's and I am of course a sex crazed hypochondriac with a real bad drug problem

Going to the ER is always a humiliating, degrading, and frustrating experience but the one thing that can make it all seem worthwhile is having at least one doctor you can always turn to, who will fight for you, and will always believe you. I have that in my primary doctor that I have had for 6 years - without him I would be lost, depressed, and hopeless.

BTW - I like how your "speech" comes across (i.e. the way you use your words.)

Hello...I have gotten depressed from being in pain as well. Had become anxiety ridden as well and take Prozac to help me stay balanced. I don't think I could have gotten through all the tests and doctor visits without it...prior to the whole Crohn's ordeal I hated going to the doctor and hadn't seen one other than a gynocologist in over 15 years!

Not sure how to help you deal with it all...I am still new to it and not sure that I deal with it well either. Been on a 2 weeks of fine, 1 week of flaring rollercoaster for months now. Today is a bad day and just hate the disease for it!

Hope you start to feel better soon and welcome to the forum.

I have also given up on the Emergency Room, I have been treated like a drug seeker (even when I refused pain meds), and I was told many many times that I had the flu. I am really lucky though my GI is amazing I only had 2 different GI since being diagnosed 19 years ago, one in pediatrics and then when I was too old to continue with him he referred me to my current GI. He actually said I have the perfect doctor for you and I know you will get along great and he was right. If I call he returns my phone calls and usually tries to admit me but he is really open to all my ideas and suggestions which is really important. Having a good relationship with your GI is really important you have to be able to trust him and he has to trust that you're telling him the truth about how you're feeling. Depression is the hardest thing with this disease- Why me is a normal question but I always tell myself that there is always someone worse off then I am. I wish you the best of luck and I hope you get relief soon.

I thank you all for taking the time to read my story. I have had luck with finding a PCP in Austin that is Awesome, stands up for me and actively advocates with my insurance company and the Hospital team so that I get the care I so much can use.

She (my pcp) had only one request and that was me to stop fighting everyone that disagreed with my presentation and symptoms. She was like, hey "WE" knows you have Crohn's if someone wishes to deny that, we don't have to fight with them about it, we'll find another physician to treat you in the ER/Hospital.

It has been working darn well so far. Finally right?

Amazing how So many of us have the same experiences, yet feel so alone at times. For the longest time I thought no one knew how I felt, I am happy to say I was wrong on that regard!

thanks again...