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My Story - diagnosed via surgery

Hi there,

I'm a 32 year old female, diagnosed August 2002. I went into the hospital after suffering from cramps and loss of appetite, and mouth ulcers that lasted over a week. At the time I was going through a bad relationship, and stress of losing my job, I was actually in my last week of work due to downsizing. I assumed it was just stress and menstrual cramps.

After heading to a walk in clinic and sitting hours to be seen, the doctor assumed it was appendicitis and wrote a recommendation of immediate admittance to the hospital for me to bring with me. This recommendation did not help me too much. I still had to wait in the main waiting room, with pain increasing exponentially, for 3 more hours. I was then finally given a room in the ER (private thank god) and waited while the doctor on call, a radiologist and surgeon argued over the next step, as blood work and urinalysis was inconclusive. The pain was getting worse, even with morphine, and the surgeon won and recommended the appendix had to come out before it was too late.

So the surgery came at midnight, 8 hours from my initial walk in clinic visit. While they performed the appendectomy they discovered I had a healthy appendix, but I did have a perforated intestine(ileum?). 9 inches was removed along with the appendix. Pathology on the portion they removed was done, and I was diagnosed with Crohn's.

I have had a few more hospital stays since then. May 2006 I was admitted with abdominal pain, fever, body aches, back pain and severe fatigue. After A CT scan they discovered, my spleen, liver, intestine (near scar tissue) and gallbladder had lit up like a Christmas tree. They determined I had mono (still don't know how I got that?) and was told to go home and take it easy for a few months.

A week later I was back in the hospital with persistent back pain, so much so I couldn't sleep even with mono! They determined I had an arthritis flare up (along with everything else) and I was sent for a steroid injection in my S.I. joint.

I had to go for follow up ultrasounds, to make sure the swelling was going down in my liver and spleen. They discovered the swelling had decreased (but not enough and I had to return 2 more times to check on it). They also found I had 20+ small gallstones. The tech showed me the screen, after doctor approval, and it looked like a necklace was lining the bottom of my gallbladder.

So February 2007, I had my gallbladder removed. Much of the pain I had been going through since my first surgery in 2002 was gone with the removal of my gallbladder.

I have all the usual tests in the last 9 years, Regular Blood tests and Urinalysis, Stool Samples, Abdominal Xrays, Upper GI Series, Bone Density Tests, CT Scans, Ultrasounds, and Colonoscopies. Definitely felt like a guinea pig at times.

Since then I have been on Pentasa (5 years), Entocort (2-3 months) and Sulphasalizine (3 years).

So I just try to stay positive, reduce stress (not very easy to do), eat well and monitor my body for any changes.
 
Sorry for the long rant... sometimes its just nice to get it all out and know there are others going through something similar.
 

David

Co-Founder
Staff member
Location
Naples, Florida
My goodness, you poor thing! Nobody should have to go such terrible times :( I am however glad that you found your way here. Anytime you need support, we're here for you! And as you know down have a lot of wisdom and experience to share, we'd love for you to provide that to others if you ever feel up for it.

Thank you for sharing your story. I hope that things continue to improve for you and you don't have to play guinea pig anymore. All my best to you :)
 

xJillx

Your Story Forum Monitor
Hi Marianne and welcome! Boy, you have been through so much! You are one strong lady!

I sure hope things have been quiet for you lately. You have a good thing going with your maintenance meds, positive attitude, and taking care of yourself. So, I hope you are and will continue to feel good!
 
Hi Marianne! Boy do I know how it feels to wait in ER's for hours on end in horrible pain! I'm sorry that you have had to deal with that too.

Trust me, ranting is aloud here! We all need to do it from time to time. Welcome to the forum! I'll be looking forward to seeing more of you around here. :)
 

ameslouise

Moderator
Hi Marianne - Boy that must have been a shock to come out of surgery and learn you had some of your intestines removed and a new dx of Crohn's!

Hope you have things under control now and are feeling okay!

- Amy

PS Yes, you are right that sometimes it just feels good to let it all out. We do that a lot around here!
 
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