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Crohn's Disease Forum » Your Story » My Wife's Story..long time for diagnosis


06-24-2017, 10:12 AM   #1
NeilG
 
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My Wife's Story..long time for diagnosis

My wife does not use forums much, but I do and I was hoping to share her story here and perhaps get some input and support which i can share with her, and also I wanted to tell about her road to a diagnosis in case it helps anyone else.

PREQUEL, AS I AM NOT SURE IF THE FOLLOWING WAS THE CROHNS OR NOT:
About 4 years ago she was feeling bad and we went to the ER. She was short of breath and her pulse was very fast. They did an xray and thought she had pneumonia. They put her on levaquin and sent her on her way. A couple of weeks passed, and there was no improvement. She could not walk through the store without resting. She had lots of pain in the left side, especially when trying to draw a deep breath.

She went to an urgent care center. The Dr who saw here there turned out to be a respiratory specialist. He was convinced that she did not have pneumonia, but a pleural effusion which is a buildup of fluid in the lining around the lungs. We did not have insurance at the time. A week after that, she felt really bad again and we went to the hospital. Again, her pulse was sky high.

They admitted her and wound up draining over a liter of fluid from around one of her lungs.
( I must say we are not sure if the plueral effusion had anything to do with Crohns)
There are no good reasons to have a pleural effusion so they did LOTS of tests. The only thing that showed up on the bloodwork was the IGE factor...which was a marker for inflammation. All they could tell us was that she was having a massive inflammatory response but they could not tell why.

Sometime during all of this, she developed gastric reflux, which she never had before.

We made many trips to the ER in the following year, often they would admit her. Sometimes she would have instances of fast pulse and light headedness, sometimes it was just the chest pain that took us in.

2 more times they had to drain fluid, and the inflammation marker always came back high, even after her pleural effusion went away for good. This was puzzling since they had said that the inflammatory response and the effusion were related. We got her on my insurance plan at work and she saw lots of different specialists. She started medicine to control her heart rate and blood pressure. They all generally thought she had an auto immune disease. Rheumatoid arthritus and Lupus were mentioned, but were ruled out.

She saw a GI doctor about the reflux and he did an endoscopy and there was alot of damage, so she started on medicines for that.

Overall she began to feel better, but she had a lower GI bleed about 2 years ago. They did a colonoscopy and came back with a diagnosis of diverticulitus. At a follow up visit with the GI doctor a few months later, she told him she was in pain, and her bowel habits had him worried. You know, all the drug advertising on TV makes you think Crohns is just about having to run to the bathroom every 10 minutes or something. She was the opposite. Ive known her to go 10 days without going. This had been the case for years, but no DR we told about it during her other troubles ever seemed too concerned.

Her GI Dr decided to have a cat scan done. I forget exactly what but there was swelling somewhere that was a marker for Crohns, and although he did not see anything in the previous colonosclopy he did another one in case he missed something. Still, no ulcers in the lower intestines, but he confirmed the Crohns diagnosis after a biopsy and started her on Budesonine and some other medicines.

Finally up to present day:At a routine check up 2 months ago with the GI Dr, she told him about her back pain, which she had for quite some time, but had been getting worse over the last year. She assumed it had been muscular) He seemed worried and said, "Well, we did the capsule endoscopy on you back when we diagnosed Crohns right?" They had not. He seemed sure he had done one, but he checked his charts and saw that it had not been done. She had the test and he told her that she literally had more ulcers in her small intestine than he could count. He was very somber and apologetic, he had not realized how severe her Crohns was. There are numerous strictures as well. He started her on chemotherapy and another steroid.
She also has had some more lower GI bleeding and some bouts of vomitting.

She is going to have an MRI in a couple days to determine whether Humira or surgery is in order. She almost feels surgery would be better after reading about Humira...we'll see what the Dr says.

So there we are. Inflammation maker high for years, no one knew why...a cat scan that showed she had Crohns and a capsule endoscopy that came a little late as far as Im concerned. Again, not sure where the pleural effusion fits in if at all, but jeez.

Sorry for the long winded message, just trying to sort it all out, im sure I got some things wrong or out of order!

Take care all!

Last edited by NeilG; 06-24-2017 at 10:27 AM.
06-24-2017, 12:52 PM   #2
ronroush7
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Hi. I am sorry for all you guys have been through. Let us know how the MRI turns out and whether they decide on surgery or Humira. Sending support.
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07-05-2017, 04:59 PM   #3
NeilG
 
Join Date: Jun 2017
Thanks for the reply!

She just got a call from the Dr about the results today. He says that the Crohn's is very severe, the worst part is an 18cm stretch of the lower intestine, the part that leads right up to the large intestine.

He tells us that insurance guidelines say that she has to have tried 3 out of a certain 5 medications before they will consider surgery, so they are going to start her on Humira, which will be the third for her. They are going to wean her off of what she is on, catch her up on some vaccinations, and then start the humira. Also daily mirralax from now on. As he tells us, the humira is the last thing to try before surgery.

I did get part of the back story wrong, what actually led to the Crohn's diagnosis a year ago was this: She had gone to see her OB doctor and in a routine test they found blood in her urine. So she had a sonogram which showed alot of gallstones and dialated kidney ducts...that led to a cat scan which led to several things, one of which was that one of the lymph nodes near the colon was swollen in a way that suggested colon cancer, (or Crohns as it turns out) so that led her back to the GI for another colonoscopy, which in turn led to the Crohn's diagnosis.

I will update when I can,
thanks everyone!
07-05-2017, 06:28 PM   #4
ronroush7
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I wish the best.
07-05-2017, 11:36 PM   #5
cmack
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I wish the best.
Same here. I hope things get better.
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