My body seemed to level back out again, weight wise. When I picked Dan up from the airport, I was still nauseous but it was dinner time and I really wanted a French dip sandwich from Mimi’s Cafe. Instead of only eating half (like usual), I ate about 3/4 of it and half of my fruit bowl. The next day I managed to eat most of my Qdoba nachos for lunch too!
The rest of the weekend I’ve been eating lighter, but I did go back up those three pounds. The nausea is a little more manageable, but still pretty bad. We’ll see what happens this week. At least the rapid weight loss seems to have stopped for now – that was unnerving.
Today, Dysautonomia International shared an article to their Facebook about nausea and vomiting, and how the two don’t always go hand in hand and how they tied to the nervous system. The text that accompanied D.I.’s post points out that nausea is a common symptom for dysautonomia patients.
As many of you know, I have been suffering with chronic nausea for years. Lately, it’s been so bad that, at times, I struggle to eat. That’s actually part of why my GI decided to do the colonoscopy. As of my last appointment, he didn’t believe I had primary gastroparesis, but he did say I definitely have what is called “delayed gastric emptying” which is caused by my whole system running slow so it tells my stomach to stop working. Very similar, but different causes. He is thinking he might do more testing though, later, just to be sure.
I am wondering if the reason my nausea is so bad is because it has multiple causes?
Anyway, I found the article extremely interesting and really wanted to share:
As I mentioned at the beginning of yesterday’s post (The Personal Hell That Is My IBS), my GI is starting to suspect that my IBS may not actually be IBS after all. Why has he come to this conclusion? Well, for the same reason I am not completely shocked by his conclusion, actually: because I just do not respond well to any treatment for IBS that I get put on. For some reason, everything we do to try to treat my digestion problems just seems to cause me an entirely new set of issues. My system just doesn’t behave at all like it’s supposed to, to anything at all. Wonderful.
Unfortunately, my gastroenterologist is now starting to suspect that my IBS may actually be something more than IBS. I have been dealing with my severe IBS-C for more than 20 years, so this is both not surprising and very frustrating. (Yes, I am only 26. I literally cannot recall a time in my life that I have not been constipated unless I was horribly ill and afflicted with diarrhea instead.) If I was told to name one singular illness that causes me the most negative impact on a daily basis, and that I have to most carefully plan my life around, I would choose my IBS. Yes, above the POTS that makes me so dizzy I can’t think straight, above the fibro that can make a gentle breeze feel like I’m being sand blasted, above the allergies that make my eyes feel like they’re full of sand, and above the asthma that can make me feel like I’m trying to run a marathon on top of Mt. Everest. My IBS literally runs my life and it is relentless.
(Disclaimer: This post is going to talk about poop, just in case you hadn’t figured that one out; you might not want to be eating.)
My entire body feels like it has a migraine. I’m in so much pain today. My back is STILL shot. I thought after Pilates yesterday, my back would feel better, but I can’t seem to get ahead of this. My fibro pain is almost always first prominent in my hips, so I’m pretty sure that is why I’m just stuck in this cycle. The daily migraine also hit REALLY early today, and I was struck down by about 11am, when I woke up at 10am. Ugh. I have been lying on the couch, with the room dark and the TV on VERY quiet just because my ADHD makes me really bored if I’m not doing anything at all. I finally had to call Dan at work because the waves of pain were too much, and then came to the realization I absolutely had to take Tramadol and Excedrin (an hour apart for my poor stomach). I had buttered noodles and Ensure for lunch, and my stomach is still killing me despite Zofran. No idea if it’s the medication or the migraine or the pain or a combination of everything or something completely different. I can barely think and I feel horrendous. I’m so sick of lying on the couch. I’m so sick of headaches.
Daily pills (AM top hand, PM bottom hand), and my usual place and position of lying on the couch.
When I was trying to determine what “severe diarrhea” was defined as, medically, I couldn’t find anything. Seeing as how I have suffered from the exact opposite problem my whole life, I don’t exactly have a reference point. The Linzess says to stop taking it and contact your doctor if you have severe diarrhea. It’s to treat IBS-C. I see problems with this, in that most people that need medical intervention for constipation probably don’t really understand what qualifies. However, while I was trying to find a definition, I did find that you should seek medical help for diarrhea lasting for more than 3 days in an adult.
Today, I woke up completely exhausted, and decided to skip classes to recover my strength (my stomach didn’t hurt at 6am). Then I woke up again at 11a, and realized that my stomach hurt again and I was still exhausted. Sadly, I seem to once again have very watery diarrhea. Tuesday, when I had the watery diarrhea, was a Linzess day, and so is today. But I seemed to have adjusted to the Linzess and it wasn’t causing any problems for a week or two so I don’t know if that’s causing it or if it’s a coincidence? Ugh.
Tuesday, I had one non-watery diarrhea episode, and three watery diarrhea episodes. Yesterday, I had one non-watery diarrhea episode but could barely eat anything at all so nothing was in my system to pass through my intestines anyway. Today I have so far had one and I can tell in about two minutes I will need to rush to the restroom again for another episode of watery diarrhea. Does this count as three days?Why is medical intervention necessary after that long? I don’t have any signs of dehydration above anything that is normal for me (my lips are chapped, but they are almost always chapped; my skin isn’t dry and it is still completely elastic). I’m doing my best to drink fluids, but my belly is upset so I can’t do it too quickly or I feel like I’ll vomit. I see my GI doc on Wednesday. I just need to know if I should be calling my doc tomorrow morning or if I might be okay over the weekend. My Urgent Care centers can give IVs, so I don’t think I’ll have to end up in the ER if i get dehydrated. I’m just worried and very confused. Any advice?
(Started writing this 3/29) If you read this post, then you already kind of know what I’m dealing with today. If you didn’t, a quick summary is that last week I accidentally drank a moldy LifeWater and had to deal with watery diarrhea for a day (and overall feel like I was dying).
Today, I had to go to school. I managed to wake up at 6am and make it to my 8am class because I had to take my exam.
I haven’t been to class much at all, but my math teacher is very kind and still recognized me by name and seemed very happy to see me today. I had two hours to take my exam, and I finished it in 45 minutes (that was the total time even after looking it back over twice). I had 15 minutes to kill before the “graduation expo” (or whatever they called it) opened, so I could buy my cap and gown, and my next class wasn’t until 10. While I was waiting, my stomach issues of the last few days got worse. The last two days I’ve had a lot of gurgling high up in my abdomen, and I’ve been having a lot of bloating and some distention, but nothing has really been moving. I’ve really just felt awful as a result, and really haven’t wanted to move. I don’t know what has set this off. But while I was waiting to buy my cap and gown, I started to feel even more sick. My lower abdomen started to get stabbing pains (which is usually a sign that things are about to get dramatic in a not so fun way), but it still didn’t feel like anything was moving; the bloating feeling was getting way worse; I felt like I wanted to throw up just to empty my abdomen out, but I’d only eaten two homemade blueberry muffins so I knew that wouldn’t actually help; and my upper abdomen started to get all gurgly again. I started to get the acid feeling in my throat from the urge to vomit, and was swallowing hard to keep it at bay (I knew I didn’t need to and it was just a last ditch “please help” type of reaction). Then I got all light headed, probably from not being able to take all my meds.
My house is burning out: both Dan and I are burning out, actually. We’re both pushed pretty far towards our limits and both our burn outs are feeding into each other. It’s not a good situation really, but luckily we have each other and the little strength we each have left is stronger together. Dan is really busy with school, and work, and the stuff around the house that I can’t do, and the home improvement stuff that I can’t do, and taking care of me. I’m busy with school, and the stuff around the house that I can do, and trying to get the stuff done for making money that I want to do, and trying to figure out how not to be in so much pain, and all my doc appointments, and dealing with side effects, and getting over a head cold, and trying to figure out what I can actually do around the house, and trying to make sure I have the spoons I need for the commitments in the coming days.
The burn out is really why I haven’t been on here. I’ve just been trying to survive right now. It’s been harder than it sounds. Hopefully, things will start to equal out soon.
So the pill days still seem a bit rough. I’m not completely incapacitated today, however, just a little more ill than I wanted to be. My digestion is still a little worse than I’d like, and the nausea and cramping are back. Thankfully, nothing is as bad as it was. I would definitely say I’m adjusting, but I wouldn’t feel comfortable leaving the house for too terribly long while I’m like this. Hopefully, it’ll be okay soon. I think I’m going to restart my probiotic on non-pill days to help keep things moving. Luckily, actual meals yesterday seemed to go just fine 🙂 Hopefully this is a sign that things are going to look up a bit!
So far, today has been a random and sudden surprise. I woke up, and I realized I no longer felt incredibly ill. Of course, I was tentative about it. The nausea was still slightly present, but that’s been pretty constant for several years at this point (I wake up nauseous daily). I ate my oatmeal, and expected the cramping and pain to start back up… but it didn’t! I got dressed, and still nothing. I used the restroom, which is where things usually take a turn for the worse, and my intestines only did a minor bit of spasming but without pain. I went to my first class, and made it all the way through without pain. I went to my second class, and made it all the way through that one without pain too!!!!! I’ve been home for over five hours now, and still [belly] pain free! Each time I use the restroom there seems to be some residual spasming, but no pain and no unpleasant bathroom things. So far, so good! I’ve been able to eat my oatmeal for breakfast, and two blueberry muffins AND some buttered noodles for lunch. I’ve been able to drink some water and a Pepsi and some green tea. So far, I’m actually feeling a lot better.