You know the old saying “you’ve been so bad, bread and water for dinner for you” we see in every movie? I’ve been living it. Sorta. Just a warning- there’s a LOT of puke in this tale. skip if you’re squeamish.
Some of you may remember the great “food loss” of 2019. Starting in May, I stopped being able to eat properly. Eventually by October I was down to literally baked potatoes and gluten free rice crackers. But I started to get foods back slowly. And I started to hate baked potatoes for a while. Until April this year. I was enjoying lentil pasta and goat mac and cheese. Then, I got an ear infection from the vomiting that started back up and aspiration in to my eustacian tubes. This was a mess (there is a much longer tale but I’ll cover it eventually). My stomach got worse and worse. All the great food additions we had went away. Everything started coming back up violently and my autonomic system/vagus nerve got involved.
As a result, we tried to calm my system with the only thing it wouldn’t throw back up: toast. Toast with butter or dry. And water. But not too much because, unfortunately, my stomach doesn’t absorb water properly. it sits and sloshes then comes flying back up. As the month progressed (and COVID made my special foods even harder to find) we tried other things: custards, ice cream, tea, gluten free bread. Nothing really worked for too long.
Finally I had a brilliant idea (yes I get credit for this one). PUDDING. It’s not liquid or solid, we can add my boost like powder (it’s actually Walmart’s fit4life brand made from coconut oil), AND I can’t puke it back up. So pudding it was. Vanilla only, occasionally we added a drop of chocolate for variety. And a super dense cake like bread made from lots of eggs and gluten free flour baked together. The combo usually works. Ritz crackers settled better than saltines.
The down side is that it’s not nutritionally complex, again. I’m constantly dehydrated and not need more fluids than normal. Low grade fevers started popping up a month and a half ago (likely due to dehydration). My blood pressures dropped even lower (I can’t consume enough sodium or absorb it enough to help). To complicate things further, I developed severe stomach pain. Touch or press and I’ll scream at you. That started in May. It’s been months and no GI doctor will take me. The scan they sent me for showed nothing (of course- because a contrast one would have required pre-medication and apparently that’s difficult [side note here: I will cover my successful pre-medication and the SIMPLE process it was leading up to using contrast for my PORT study.])
Anyway, I digress. I’m back to pudding and toast. We started me on a low dose of Valium (partially to help control possible mast cell mediated responses- it’s a stabilizer, and partially due to some really great input from a support group member) In addition to the gastroporesis, and all the meds also slowing my gut down, I seem to have developed a Cyclic Vomiting Syndrome LIKE condition. If you look up CVS, it’s nasty, severe, horrible, and not exact me. I don’t require sedation. but upon speaking with a young woman around my age with similar conditions AND a prior diagnosis of CVS, she explained hers started like mine. She guided me to some research to see what medicines MIGHT help keep it under control. With my doctors approval, we started some low dose valium. It stopped the CONSTANT painful nausea from the moment I woke up to the moment I went to sleep. It slowed the vomiting, some.
But now it’s back. We just added in poutine- Thanks Canada for this magical creation- and not apparently things are worse. my vomiting episodes now last 30-45 min, require 2 zofran (because my IV phenergan CANNOT be taken with Valium and my doc refused to prescribe a different medicine than Valium). As some of you know- Zofran gives me migraines and messes up my GI tract even more every time I take it. So now I am back to croissants (less choking hazard than regular bread) and pudding for a few days to try and calm things down.
I know it sounds crazy but honestly (pregnant women or women who had been pregnant you will get this) everything makes me sick and everything makes me upset. My cravings are insane but my stomach won’t let me eat. For those of you who haven’t had the joys of a rough pregnancy- imagine food poisoning puking/extreme hang over, how horrific that is, then imagine you can’t get up the next day or the following and go get whatever you want to eat. The feeling never ends, the nausea and vomiting don’t stop, and you get no warning. Previously, I was burping so much and so loudly we knew before I got sick because it intensified [yes I really did burp for a solid 2 months non stop…ER said it was an ulcer…]. Now we have virtually no warning, sudden pain and hot flash, then projectile vomiting that just doesn’t stop.
As a result, I’ve developed some wonderful [not medically approved] ways to handle it. Including flooding my stomach with water or milk to dislodge stuff that gets caught in my esophagus and makes the vomiting worse [it’s either going up or down at this point], milk to coat my teeth and throat from the acid, honey will save your throat as well, saline rinses for the nose, and hyperventilating style breathing to help me pass out so the zofran has time to dissolve and get in to me. NONE of this is medically recommended, half of it is probably a really bad idea. But since no doctor wants to help, we’ve resorted to what we have found works. Half the battle is trying to get my blood pressure out of heart attack zone and my heart rate down so i can actually calm down.
Fun fact for you- when the vagus nerve gets involved, it triggers this unusual response for me of a squeezing sensation that just won’t stop. Like an internal gut spasm. And that in turn makes me more nauseated and more vomit. On and on and on again it goes. So we try and trick it as best we can because all those wonderful “anxiety and panic breathing techniques” are completely useless and make it worse.
So back to the toast and pudding- right now I live for my butter croissant’s and pray that the pudding stays down. I’m dreaming of fried chicken and onion rings (mainly a missing nutrition craving here- I remember keto cravings, so I know exactly why I want those things) and hoping I’ll get out of the cycle soon. Because honestly, I’m actually starting to miss those stupid baked potatoes but I DO NOT miss choking on noodles…
Life On Fire 