This past Wednesday I went and had a test done to see if I’m growing bacteria in my small bowel. Although I felt like my constant diarrhea was improved (it’s only every few days now that I have to empty my ostomy bag 8 to 14 times a day instead of every single day as it had been for months.) the GI doc felt it was a good thing to check out – just to be on the safe side. I’m also having this problem where I belch all the time. I don’t know its coming and so out come these horrible belches worthy of a beer-guzzling frat party. Also I’m having some nights where I wake up and feel queasy. Apparently watery poo and gas said bacteria to Mr. GI Man.
He’d only told me briefly what to expect telling me the nurse would explain the test in greater detail. Like an idiot, I didn’t even write down the name of the test.
As it turns out the nurse and I played phone tag just long enough to schedule the test, but not long enough to ever have much of a conversation about the test. Needless to say, I had no idea what to expect.
The doctor had made it seem relatively harmless and painless – but then again, so did the doctor that performed the barium enema test I had 14 years ago – so far it’s tied for worst test ever with the time NIH nicked a nerve while trying to get a blood gas.
Having had GI problems since the age of 19, I thought I’d pretty much had every GI test there was, and I’d never met a GI procedure I liked. Thus, I was highly suspicious that when the doctor told me all I had to do was swallow some orange flavored stuff. Somehow I had a bad feeling he was leaving out the probe chaser that would undoubtedly be involved.
The nurse had also failed to mention exactly where this test was supposed to take place. So, the morning of the test I took a cab to the University of Kansas hospital at O’dark thirty just to be sure I had plenty of time to be very lost. I went up to my GI doc’s office. Although it wasn’t open yet, there was someone there who was able to tell me where to go.
I didn’t realize, however, that I had to go to admitting first. Admitting??? Wait a second – what happened to simple test? This sounded like probe territory for sure. And I doubted anyone had thought to order any DDAVP etc…..this was seeming more and more like a bad idea.
I went back down to admitting and started to feel dizzy and queasy in the waiting room. How stupid! I knew if I said anything they’d think it was anxiety – well, maybe I was nervous, but I’d done all this before. I think it was perhaps that fact that I hadn’t eaten in 12 hours and missed two rounds of medications in order to prep for the test.
At any rate, by the time I got to the waiting room for the test, I was feeling pretty yucky and dehydrated.
The nurse came and got me. She took me to a doctor’s office because they were backed up with other people undoubtedly in for other various sorts of anal probing. Things were looking up. She explained the test. Wow! It wasn’t as bad as I thought. All I really had to do was drink this orange stuff that tasted like a melted orange ice pop. Then, every 15 minutes they’d come by and have me breathe into a tube.
I still felt crappy though, and of course, was belching away. I felt like if I could just get some water I’d be okay, but the nurse would only allow small sips.
This breathing routine went on for several hours. They brought a movie for me to watch. If I’d known I’d be watching a movie, I would have brought work and a laptop. I was expecting to be drugged up somehow.
My mouth felt so dry…water….I needed water.
I’m not a snoop, really I’m not, but if you put someone into a room for several hours on end with nothing much to do, they’re going to go looking for reading material. On the desk was a nice stack of medical journals. Score! One had a great article about nutrition deficiencies among people with Crohn’s Disease. Since the GI problems of the HPS are very much like Crohn’s, I read the article.
Then a huge book caught my eye. It was very, very thick – thicker than the phone book. On the cover it said, “ROME III: Functional Gastrointestinal Disorders.” It was a huge book of nothing but entries about all the possible things that could go wrong with your gut. Pay dirt!
Being the deva of HPS outreach that I am, I turned to the index looking for Hermansky-Pudlak Syndrome…..the glossery, the entries on Crohn’s….I looked for anything on albinism…..nothing. I couldn’t find anything that even briefly mentioned HPS. Of course, the print was small, but this needs further investigation. This appeared to be some sort of diagnostic handbook – and if we’re not in it, we should be. I made a note to mention it to Donna.
Since the test hadn’t involved any sort of probing, I thought if I got home with any afternoon left, I’d be able to get some work done. Wrong – all those nights of feeling queasy caught up with me. What I had intended to be a short nap turned into a six-hour sleep fest.
But, maybe I needed it. It seems like I need more sleep than I want to get. Thursday and Friday, however, I felt great!!!! My concentration at work was right on and I didn’t feel as tired. Hmmm….wish I knew why suddenly I felt so much better. Today I’ve felt pretty good too!
He’d only told me briefly what to expect telling me the nurse would explain the test in greater detail. Like an idiot, I didn’t even write down the name of the test.
As it turns out the nurse and I played phone tag just long enough to schedule the test, but not long enough to ever have much of a conversation about the test. Needless to say, I had no idea what to expect.
The doctor had made it seem relatively harmless and painless – but then again, so did the doctor that performed the barium enema test I had 14 years ago – so far it’s tied for worst test ever with the time NIH nicked a nerve while trying to get a blood gas.
Having had GI problems since the age of 19, I thought I’d pretty much had every GI test there was, and I’d never met a GI procedure I liked. Thus, I was highly suspicious that when the doctor told me all I had to do was swallow some orange flavored stuff. Somehow I had a bad feeling he was leaving out the probe chaser that would undoubtedly be involved.
The nurse had also failed to mention exactly where this test was supposed to take place. So, the morning of the test I took a cab to the University of Kansas hospital at O’dark thirty just to be sure I had plenty of time to be very lost. I went up to my GI doc’s office. Although it wasn’t open yet, there was someone there who was able to tell me where to go.
I didn’t realize, however, that I had to go to admitting first. Admitting??? Wait a second – what happened to simple test? This sounded like probe territory for sure. And I doubted anyone had thought to order any DDAVP etc…..this was seeming more and more like a bad idea.
I went back down to admitting and started to feel dizzy and queasy in the waiting room. How stupid! I knew if I said anything they’d think it was anxiety – well, maybe I was nervous, but I’d done all this before. I think it was perhaps that fact that I hadn’t eaten in 12 hours and missed two rounds of medications in order to prep for the test.
At any rate, by the time I got to the waiting room for the test, I was feeling pretty yucky and dehydrated.
The nurse came and got me. She took me to a doctor’s office because they were backed up with other people undoubtedly in for other various sorts of anal probing. Things were looking up. She explained the test. Wow! It wasn’t as bad as I thought. All I really had to do was drink this orange stuff that tasted like a melted orange ice pop. Then, every 15 minutes they’d come by and have me breathe into a tube.
I still felt crappy though, and of course, was belching away. I felt like if I could just get some water I’d be okay, but the nurse would only allow small sips.
This breathing routine went on for several hours. They brought a movie for me to watch. If I’d known I’d be watching a movie, I would have brought work and a laptop. I was expecting to be drugged up somehow.
My mouth felt so dry…water….I needed water.
I’m not a snoop, really I’m not, but if you put someone into a room for several hours on end with nothing much to do, they’re going to go looking for reading material. On the desk was a nice stack of medical journals. Score! One had a great article about nutrition deficiencies among people with Crohn’s Disease. Since the GI problems of the HPS are very much like Crohn’s, I read the article.
Then a huge book caught my eye. It was very, very thick – thicker than the phone book. On the cover it said, “ROME III: Functional Gastrointestinal Disorders.” It was a huge book of nothing but entries about all the possible things that could go wrong with your gut. Pay dirt!
Being the deva of HPS outreach that I am, I turned to the index looking for Hermansky-Pudlak Syndrome…..the glossery, the entries on Crohn’s….I looked for anything on albinism…..nothing. I couldn’t find anything that even briefly mentioned HPS. Of course, the print was small, but this needs further investigation. This appeared to be some sort of diagnostic handbook – and if we’re not in it, we should be. I made a note to mention it to Donna.
Since the test hadn’t involved any sort of probing, I thought if I got home with any afternoon left, I’d be able to get some work done. Wrong – all those nights of feeling queasy caught up with me. What I had intended to be a short nap turned into a six-hour sleep fest.
But, maybe I needed it. It seems like I need more sleep than I want to get. Thursday and Friday, however, I felt great!!!! My concentration at work was right on and I didn’t feel as tired. Hmmm….wish I knew why suddenly I felt so much better. Today I’ve felt pretty good too!
By the way, the results were negative.
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