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Freak accident diagnosis

I have had stomach issues since childhood, my mom was told that it was just my nerves. (ADHD and childhood abuse)

In 1996 I gave birth to my second child. After his birth my body began "freaking out" with extreme bouts of diarrhea, stomach pain and blood loss from my "bottom". My first husband begrudging shuttled me from doctor's appointment to doctor's appointment, quack to quack. I wasn't tested for anything. Most doctors said the same thing they told my mom in my childhood, it was my nerves (my first husband was mentally and emotionally abusive) one "quack" told him that there was nothing wrong with me that it was psycho somatic (all in my head) even though it was obvious that I was losing vast amounts of blood. My then husband stopped providing medical care.

Summer 1997 blood was drawn (another time) and my level was very low (humans have 10 pints of blood) I had 7 pints of blood on that Wednesday, by Friday I could not even pick my head up from the bed. My dad rushed me to the ER where more blood was drawn. I had lost another 3 pints of blood (down to 4 pints) There was no "obvious" blood loss. No different in rectal bleeding. (I would learn later I was leaking blood into my body) Even at this point no GI testing was done.

I learned to "adapt" holding down a full time job, raising my boys and leaving my first husband. Sometimes hitting the floor and scaring the crap (haha) out of my coworkers.

In 1998 I met my current husband (he and I went to the same high school, just ran in different circles, he a jock me a "head"). Somehow we became reacquainted. At this point I was still living in the home my first husband and I owned, just kept different hours.

My then boyfriend (now husband) and I went to visit his uncle in Laurel MS who was in hospice with lung cancer. On the day I finally got my diagnosis we were riding the 4-wheeler. On my turn I was riding with his cousin and I was going up the side of ditch but misjudged the angle and hit the ditch wall at the wrong angle going 45mph. The handle bars hit me in the belly but I continued riding for another 30-45 minutes. After my turn ended I was standing in the driveway and promptly collapsed.

My then boyfriend's other uncle saw I was lying in the driveway but thought I was just lounging. I don't know how long I laid there but I finally was able to stand, went into the house got a glass of ice water and went to the bathroom. (No blood was passed) I started to feel bad so I asked to go on to the motel we were staying at.

I decided I wanted to take a bath. (About 2.5 hours after accident) I got in the hot bath and started feeling terrible, abdominal pain, weakness... I called out for my then boyfriend to assist me into getting out of the tub and into the bed. I guess the water relaxed my body and the pain intensified. I started going in and out of consciousness. I remember asking him to call 9-1-1.

After being brought to the local hospital the ER doctor did x-rays and blood work. The x-rays showed nothing of significance and although my blood work was "off" the stupid ER doctor came in and told me I had just bruised my abdominal muscles. I was told I sat up in the gurney and told him that if that's all then why in the "bleep" was it getting worse!!! He told me he would order a CTscan just to shut me up.

The CTscan text had me get off the gurney and onto the machine and began the scan. When she came back in and told me to lie as still ad I could that she was going to get someone to help me get back on the gurney. As she was wheeling me back to the ER she was quiet. When we arrived back in the ER she just about threw the scans at him and told him something like, she needs emergency surgery, she's got Crohn's disease. He followed her back to my cubicle while looking at the scans and was like, you need a surgeon, your bleeding internally. Apparently I imploded my already diseased small intestines, flooding my body with poison and blood.

Between that diagnosis and surgery I was unable to sign consent forms and I wasn't married to my then boyfriend and was still married to my first husband (that's a story in itself), they called my first husband for permission to treat me and basically he told the doctor and nurse on the phone that he was refusing to give consent. He was told it was a matter of life and death... He still refused. They ended up calling my folks back in New Orleans for consent to treat at 2:30am, of course my folks gave permission. Eight days later they brought me out of the drug induced coma.

Now, I try to control my Crohn's with diet as the medications like humira don't help me. Since my diagnosis of Crohn's I have been diagnosed with lupus, fibromyalgia, Sjogren's Syndrome, occipital neuralgia all this on top of my being legally blind from birth due to glaucoma.

I have two boys. My oldest who is in the autism spectrum disorder range (high functioning) doesn't have stomach issues but has begun having joint pain in his arms and legs.

My youngest son has suffered from stomach problems since birth (when he was little we used to say he was "allergic" to clean clothes due to reflux) They haven't formally diagnosed him with Crohn's (idk why not, he has flairs ect) and his ANA is positive for lupus and he has chronic pain in his limbs. He is also ADHD with angry management issues (the last couple of years he's learned to control his anger)

I'm sorry this was so long. Thx for reading all of this.

Brnizshay (brown eyes Shay)
 
Hi Shay,
Welcome to the forum! I'm sorry that you've had to go through so much - and I mean everything on top of Crohn's and the long road to diagnosis as well because that alone was plenty and it really sounds like you have had and still have A LOT to deal with. Sometimes the Universe just heaps it on. If only life were fair and we could give these illnesses back to those who ignored our illness and pain...andall the rest too.

Sending you love and healing wishes for your whole family. I wondered, what diets have you found success with? And do your boys eat the same diet? It's not that I have any particular knowledge of this but I have always been interested when people talk of a connection between the gut and brain, and the benefits that diet can have for those on the autistic spectrum.

So sorry to hear than you are all suffering :ghug:
 
Hi. My diet consists of loads of salads, even tho leafy green veggies are "bad* for me. I try to stay away from fast food and junk food in general. My son with stomach issues thinks he's invincible to the effects of Crohn's which he's not. I also stay away from spicy foods even tho I am a "registered coona$$" (southern Louisiana born and raised living in the pacific northwest)

When I first was diagnosed I was on pentasa. No help, did a few clinical trials like Remicade and Humira, again no help.

Lately my Crohn's has lead to severe constipation. If things "don't work out" by Sunday afternoon I will bring myself to the local ER for treatment.

Brnizshay (brown eyes Shay)
 
My AS son is 22 and eats fairly decent. His biggest "issue" is severe social anxiety which has nearly made a complete hermit. He's tried finding work but alas, jobs are very difficult for him. Even jobs that don't require social interaction.

Brnizshay (brown eyes Shay)
 
Hi Shay,
Sorry to hear that you didn't respond to any of those meds. There's quite an active diet support group on this forum that might interest you - you'll find that here.

Sorry to hear about your son's social anxiety too. That's very understandable that it would make having a job difficult. I hope he can find something that works for him.

I hope the constipation resolves

Good luck to you all
 
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