Stomach problems… Wait, what?

Posted by Karen - July 16th, 2017

A few years ago, I started hearing about belly issues in the FOP community. Random things, so it seemed – this person digested food too slowly, that person had frequent nausea, the other person had acid reflux… I wondered whether this might just be coincidental – surely this stuff had nothing to do with fibrodysplasia ossificans progressiva? FOP is all about soft tissue swellings, bones, and progressive limitations. Additionally, stomach issues aren’t really documented anywhere in the literature (at least, not that I had seen). Well, I thought, whatever the reason, luckily this wasn’t something we were dealing with – Miranda had a “good stomach” and was rarely ever sick.

However, although I didn’t realize it at the time, things started to change – ever so slowly – about a year or so ago. Once every 3 or 4 months in 2016, Miranda would wake up very early in the morning and start gagging. She couldn’t eat anything, and would spend the whole day in bed gagging up saliva/mucus and stomach bile (no actual vomit, since there was no food in her stomach). Then, she would inevitably be better the next day… I always chalked these episodes up to gastrointestinal viruses which were making the rounds – hey, lots of kids in her class were out mid-winter with “24 hour stomach flu”, so surely that’s what it was. Anyway, when it only happened 3 or 4x per year, it wasn’t a big deal and wasn’t something to be concerned about. Also, I mentioned it to her paediatrician, and he scheduled a GI study with barium swallow – it turned out to be negative for any intestinal blockages, so all good.

Then in January of this year, Miranda’s left leg started to flare. A rotten, evil, and extremely painful FOP flare-up started in her knee, and over the course of the next several months, that flare-up travelled up and down her leg from location to location. Finally by April-ish, it reached her hip. She started having lots of pain in the hip and upper thigh region, and that’s also when the stomach stuff started to increase in frequency. In April and May, the stomach episodes increased to a little over 1 per month. Still, the belly component wasn’t too big a deal.

It was in June that things started going haywire. Miranda started having one of these episodes about every 10 days. Now this was starting to worry us. We sought some medical advice, and got a prescription for Ondansetron, an anti-nausea medication given to people getting chemotherapy. It had ZERO beneficial effect, as far as we could tell. Next up, a friend recommended Domperidone, which is available in Canada but not the US. It too is known to have “anti-emetic” (ie, anti-vomiting) properties. I think it slightly increased the intervals between gagging episodes over the course of the day – or maybe that’s just wishful thinking; I don’t know – anyway, it certainly didn’t solve the problem. Since the sickness was still only once every ten days at that point, we then “crossed our fingers” and travelled in late June to the Canadian FOP Network family conference in Ontario. Sure enough, Miranda had a sick day on the last day when we were supposed to leave. This delayed us a day from flying home.

The last week of June was really bad. Miranda ended up missing school every day that week, because she got sick on the Monday, was feeling better on Tuesday but needed to recover from eating no food the day before, then sick again on Wednesday, and sick again Thursday morning – she didn’t get substantially better until the Friday of that week. Gah… This was extremely worrisome, and culminated in a fruitless trip to BC Children’s Hospital on Thursday (fruitless because the good doctors in Emergency didn’t know what to do or recommend, and besides, M had stopped gagging by the time we got there so didn’t look too bad). That week we tried a couple of things – on the advice of one FOP doctor, we started Miranda on an antacid medication, and we also got a prescription from our paediatrician for Gastrocrom, a medication which is supposed to calm down inflammatory substances in the stomach. Finally, we got medical permission to give Miranda Ativan in case there is an anxiety component to all of this.

Things started looking up… Maybe the meds were working! Miranda did well the first weekend in July and the whole first week, with no problems. But, then it all started again that Sunday. This past week, Miranda was only well enough to attend her summer art camp 2 out of 5 days. SIGH… And she’s sick again today, after being good for 2 days.

Starting in June, I’ve been seeking advice from FOP experts and the FOP community. Since then, I’ve learned that a sizeable minority of people with FOP do seem to have gastric problems, and further, that it seems (at least anecdotally) to be worse in the teen years. Is this because of puberty hormones getting in the mix? Or is it because the teen years is when many people start having the heavy-duty leg flares – acknowledged to be the worst and longest lived flares, probably with the most widespread inflammation? Is all of this also worsened by stress, which has definitely occurred as we moved to a new home in June? I think it’s probably “a little from column A, a little from column B, a little from column C”.

So what’s next? Is the stomach stuff going to carry on with this weird and seemingly random on-again-off-again pattern through the summer? What about into the fall? Will it end when the leg flares start calming down? What are we going to do about school this fall, if this carries on? Unfortunately, there seem to be no clear answer to these questions. We just have to fumble our way through.

Do you have FOP, or a child with FOP, and have gone through something like this? If so, and if you have any wisdom to share, PLEASE get in touch with me. Thanks ever so much.

Miranda and her dad on one of the "good" days recently.

Miranda and her dad on one of the “good” days recently.

PS – Despite all of this, we are still planning to do the Walk for FOP on August 6, 2017 in Calgary. Please donate to our cause. To do so, go to www.walkforfop.com and click on “General Donations”. Or, contact me and I’ll advise as to how to send a cheque. Thanks. 

 

One Response to “Stomach problems… Wait, what?”

  1. Jeri Licht says:

    Hi Erin/Miranda’s Mom. This is Daniel’s mom, Jeri. It is a constant shock to me to say it, but Daniel is 23 now and in college. [And yes, as I know you and your readers quite understandably want to know, he IS still walking, I am thrilled to say. (Knock on wood, Knock on wood.)]. I have read your words on and off for years and your thoughtfulness and intelligence come through loud and clear. Both are great assets for Miranda now and in the future.

    Now on to the issue: There does seem to be a surprising number of people with stomach problems in the FOP community. I believe that there has always been a stress component with Daniel, as I think you note above with the mention of Atavan. Although Daniel has never taken any similar meds (Peter and I have!), the stress connection got worse as Daniel got older because needing help in the bathroom complicates all other aspects of growing up and living independently (just as it complicates all aspects of getting very old). It stinks when one has to consider more than just being yourself, like what you are eating, how much you are drinking, timing of bathroom breaks, who is around, and how it all affects your need for the bathroom.

    In addition to the stress side, I think there is a structural side of Daniel’s belly issues because, like everyone with FOP to one degree or another, he has FOP-created tissues (bone, fluid and semi-solid bands of tissue) pressing against the stomach and bowels from all directions. While the positions of some people with FOP might make this pressure seem obvious, I think there is more subtle stuff going on, too. There are times when Daniel is just not feeling right in his belly, but not in a way he can describe.

    As for what we do? We have tried almost anything anyone ever suggested, including faith healers and Yeshi Dhonden, the sweet healer to the Dali Llama. Oh, just for the tummy? In general, we tried purple stuff for nausea (also known as Emetrol), pink stuff for bellyache and gassiness (AKA Pepto-Bismol) and white stuff for burning stomach (AKA Maalox antacid). As he got older, we tried tablet versions, but we sometimes found the liquids soothed a little quicker.

    Now, as needed, we take the following non-prescription medicines, but please remember that this is just our family favs after our experiences and our doc discussions. There are a lot more out there that might work just as well, or even better, so please ask your own doctor for his or her suggestions: Meclizine HCL (AKA Bonine) for nausea (and dizziness), Ranitidine (AKA Zantac) for acid indigestion, and Loperamide HCL (AKA Imodium) for diarrhea.

    As I am sure you know, diet is directly connected to how a person’s stomach feels, but what causes any particular problem to any particular stomach is as varied as the number of people times the types of food available to eat. That said, though, I want to say something about your particular daughter’s particular stomach and its particular symptom. There is something that worries me about it, which prompted this whole note.

    You said your daughter is experiencing, first every 3 or 4 months and now every few days, this: “…Miranda would wake up very early in the morning and start gagging. She couldn’t eat anything, and would spend the whole day in bed gagging up saliva/mucus and stomach bile (no actual vomit, since there was no food in her stomach)”. I hope it is better, but hoping alone is not enough, so I looked up “retching” and eventually got to this:
    Vomiting is the forceful ejection of stomach contents through the mouth. This is generally a protective mechanism to remove harmful ingested substances, but can occur from many unrelated infectious and inflammatory conditions in the body. Muscles in the abdominal wall contract vigorously to create the pressure necessary for vomiting (retching). Retching, also called ‘dry heaving’ can also occur without vomiting, or can precede or follow vomiting. Similarly, nausea can occur without vomiting or may precede vomiting.

    This paragraph reminded me of the violent muscle contractions my 85 year old father-in-law suddenly started having a few years ago: also known as hiccoughs. They were driving him crazy and hurting his frail body. The details don’t really matter, but the ending might cheer you up: Though they never found the cause, they did find a fix – an unrelated medicine in the afternoon prevented the hiccoughs at night.

    Here’s the connection to Miranda: For most of his life, Daniel has had a narrow band of strange tissue we (Dr. Kaplan, Peter, friends) called his “guitar string’. It connects from under his chest area to his opposite hip-ish area, but the point is what if Miranda has something similar? What is there is some FOP-caused thing specifically annoying the “muscles in the abdominal wall” causing it to “contract vigorously” creating the retching? I don’t know how you could check it out, but you can certainly ask someone who is FOP educated. It might turn up in a 3D CT, which quite horrifically showed most of Daniel’s FOP business, but then you have to survive seeing all of Miranda’s FOP business.

    I dearly hope my missive to belly problems haven’t upset you. I know that FOP is the culprit, not us…not the sweet kids, but I fear making things worse. It has been a looonnnng time since I have written such a thing. It is necessary, though; your blog is the best example of us grouping together to fight back against FOP.



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