Day 16 in the hospital.

As mentioned in the “my history” post, I am currently on my third week in the hospital. While I did have a short reprieve (I was discharged for less than 48 hours), laying in a hospital bed for nearly 16 days now has inspired me to continue blogging. I hope the information I share helps you understand the life of a #spoonie.

On my fourth day of admission (07/15) I had a flexible sigmoidoscopy completed to determine the etiology of my recent rectal pain and bleeding. “Fortunately” it was normal. I say that in quotation marks because while it’s a positive there’s no acute infection or disease process requiring immediate surgery, the negativeness of it means that more testing will be required. It also results in some doctors disregarding your symptoms entirely. While my core team of inpatient physicians have been thoughtful and dedicated to finding an answer, one of the consulted fellows spoke to me and my husband condescendingly and implied a normal exam meant I wasn’t actually in pain. He belittled me and insulted me, by claiming I had limited medical knowledge and therefore probably wasn’t as sick as I felt. This frustrated me on a multitude of levels.

First, I am a professional medical scribe with a vast working knowledge of medical terminology and treatment guidelines. Next, as a former nursing assistant I gained hands-on experience in healthcare and learned that a negative result does not mean you stop looking for an answer. Even greater than that, I hold a masters in medical anthropology meaning I have become an expert on some facets of chronic illness. Lastly, and I would say most importantly, as a patient for 15 years I have developed a strong grasp of GI terms and treatments. I know my body better than any other person, and can intelligently verbalize my symptoms. As a healthcare professional, I was bothered he dismissed my knowledge – but I was most offended as a well informed, chronically ill patient. I became sickened by the thought that patients without those backgrounds may be completely discouraged by a doctor like that and stop looking for a diagnosis. (I have so much more I could say on this subject, but I want to stay on topic. Look forward to a future post speaking directly on this issue soon!)

So, as I was saying, my negative flex sigmoidoscopy last week sent the doctors back to the drawing board. And quite frankly, it was a good thing they had to keep searching, or else they would likely not have discovered I have adrenal gland insufficiency (a potentially life-threatening problem.) I am happy to say I am now receiving proper treatment for the hypocortisolism!

As for the rectal pain/bleeding, high ostomy output, and abnormal vital signs that put me in the hospital originally… we are still no where closer to a diagnosis. So tonight I am NPO to prepare me for a series of tests tomorrow. First, a repeat flex sigmoidoscopy with the intention of obtaining different biopsies. Second, an ileoscopy, which is essentially the same thing just the camera is entered through my stoma. Lastly, an EGD where the camera evaluates the lining of the esophagus, stomach, and first part of the small intestine. With all three happening simultaneously, there won’t be a part of my GI tract unexamined.

The doctors hope to confirm a diagnosis of celiac disease with a biopsy, since my blood test was inconclusive. I am still waiting on the results of ACTH Stimulation Test to better understand the cause of my adrenal gland insufficiency. A number of tests are being done on my ostomy output, which the attending physician said are rare. But since my case doesn’t fit a common presentation, are warranted.

Just prior to midnight I finished drinking the bowel prep for the procedures and now am NPO [nothing by mouth] until the tests are complete. I will require conscious sedation and will likely remain sleepy most of the day.

Frustratingly, the biopsy results won’t result until early next week. So it will remain a waiting game. Until then, the doctors will continue to adjust my 20 different medications to achieve homeostasis and treat my pain. I should also have a consultation with my former surgeon about surgical interventions (including anastomosis or proctectomy.)

In the mean time, I desperately need an entertaining show to stream while I’m cooped up! Drop a comment with a show or movie that you recommend.

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