Hi Michele,
Gee, your pains sound just like the pains I was having in July that finally sent me to the emergency room. I was a mass of pain from under my boobs to the bottom of my tush and looked like I had swallowed a watermelon or two. My blood pressure was elevated (I think because of the pain). I was dehydrated and so thirsty I couldn't stop drinking water. Things were going well with a very sympathetic triage nurse and nice admitting clerk, but then the ambulances started to arrive and superceded my getting a bed. So I sat in the ER for a few hours holding my belly and moaning. I had some vicodin with me and so I was able to take the edge off the pain.Finally I was taken back and given a bed in a curtained cubicle. The ER was packed with patients in beds lined up against the walls. The ER doc was not too nice. I had too many complaints, too many pains. I was to pick just one spot. So I picked the under the boobs area. I too was given the lovely pina colada cocktail and CT scan. Meanwhile I was infused with saline and given dilaudid ( a most wonderful drug) for pain. The CT scan was negative and all I got out of my hours in ER was a facilitated appointment with a gastroenterologist for the next week. Hey, that was pretty good. Usually takes a month or two.
Fast forward a week.
My belly now looked liked I had swallowed the entire produce section. The pain was unrelenting. My blood pressure soared into the 190s.An article appeared in the Sunday LA Times Magazine about rare diseases. My husband decided I fit the profile for acute intermittent porphyria which can be caused about by a reaction to anti seizure medications. I had been taking trileptal and then topomax since June when my symptoms first began. He agreed to go with me to the gastro guy and mention this. Instinctively I knew that suggesting something to a specialist was not a good idea. More on this later.
Appointment with GI. He took one look at my belly and decided I needed to be in the hospital. I was so grateful that someone took me seriously that I began to cry. Bad move. You become known as a hysterical female. This I found out later. Hubby mentioned the rare disorder. The GI didn't outright dismiss it but thought an obstruction was more likely. I was x rayed, CT scanned and scoped up and down. During the clean out for the colonoscopy massive amounts of poop came out. Meanwhile he ordered a 24 hour urine collection to test for the porphyria. I was still in a lot of pain. My blood pressure wasn't coming down and so they started me on medication to lower it.
Day 3 in the hospital. Enter the GI. He had a strange gleam in his eye. From the kind compassionate doctor he had been a new personna emerged. He was waving the pictures from my scopes and announced: "It is irritable bowel, nothing but irritable bowel and for that the only cure is fiber, fiber and more fiber. " He handed me the pictures. In addition to IBS, I also had a hiatal hernia, GERD and gastritis (hence the upper pain) and a rectal prolapse which he said was caused by constipation. I mentioned that I had been having more D than C and he said that the D was breakthrough and that I had actually had a fecal impaction. He did say the prolapse needed to be taken care of and he'd send a surgeon by to discuss it with me. He then sailed away. A few hours later he called the hospital to tell then to discharge me after the 24 hour urine collection was finished (10:30 PM) and to discontinue the dilaudid. I was floored. He was discharging me in the middle of the night - I was being catherized so I would have to urinate on my own before they could dismiss me - plus he was just abruptly terminating pain control. I didn't know what I had done to make him switch. I think it was suggesting the porphyria but after talking to my nurse, she said he is that way. He is a very good gastroenterologist but he is very moody. Also he was going on vacation but she said that if I needed to stay in the hospital she would call him in the middle of the night. At that point I just wanted out.
The surgeon came and from what I can remember he said that he hoped I didn't have to have surgery as it was not pleasant and that maybe it could be managed medically by keeping the stool soft. I really don't remember much of that as I was in shock from the switch in the GI's demeanor, the mere thought of surgery and the dilaudid.
My discharge instructions said I was to follow up with the surgeon and the GI. When I went to see the surgeon, he said why are you here. Your prolapse isn't too bad and you don't need surgery. But when I went to see the GI he said I definitely needed surgery and I was to see a colorectal surgeon at USC. He also explained how I could be constipated and have diarrhea at the same time. During the IBS spasms, the colon clamps down and narrows so that normal stool cannot get through. The stool backs up behind the restricted colon but some breaks through as diarrhea. Several of the meds I had been taking caused constipation as did my hypothyroidism. I''ve discontinued some of the meds and my new internist is supposed to be checking my thyroid more often as I had gone hypo before this bout.So that is where I stand now.
Am I under control. NO. Am I better. Yes. Finally. The upper pain is controlled by Protonex. I had been taking prevacid. He said in a couple of years I'll probably have to switch to something else. For the IBS I take benefiber but have to be cautious as too much causes too much gas and bloat, mirilax when needed , imodium when I absolutely must (if I have to do something and am having D- then I get C for a few days) bentyl for spasms when needed, gas x. The bloat and gas is still bad but at least I am not spending half the day in the bathroom or in bed with the heating pad. And I do take vicodin (hush, hush the docs really don't like that) when needed so I can function. Narcotic pain meds are constipating however so I have to be careful. But they can be so helpful and it is better to function with them than lie in bed rolled up into a ball.
Sorry this is so long. I'm rather new to the boards and have been reading the posts but haven't posted much. I just wanted to let you know that I really empathize with you. I hope you start feeling better. Wouldn't it be nice if we would be treated with kindness and understanding rather than scorn and dismissal? And I don't think you are mental.
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Re: Having a bit of a meltdown. Am I mental???
