Momentary Relief

If you've been following my recent updates regarding my health this post is just a minor update, if you have no interest in that then feel free to skip it.

I still don't have the answers I wanted from Doctors, I don't have a diagnosis and that's the most frustrating part right now. I kept track of my diet for 6 months and how many times I threw up, in the end the total came to 36 which averages once or twice a week. I was prescribed a tablet called Pantoprazole to see if it would remedy the situation but for the two weeks I was on it I threw up every single day, so after consulting my Doctor we agreed to stop it.

The good news is that means it's probably not a stomach ulcer as Pantoprazole and all other -prazole tablets are a class of drugs called Proton Pump Inhibitors which act by lowering stomach acid levels. The fact this made my symptoms worse is a good indication this isn't a problem with stomach acid, and likely not an ulcer. This provided me with some relief mentally but it didn't last long as I still don't know what else it might be.

This wasn't the first time I have taken Pantoprazole, I was prescribed it in 2017 when I was diagnosed with Pulmonary Sarcoidosis, the journey up to, through, and the aftermath of that diagnosis was documented on another blog, the posts from which were all imported here so if you're curious about that journey it started in March 2017 and took up most of my life until formal diagnosis in September 2017, and treatment which lasted until December 2017.

The relevance of Sarcoidosis extends beyond the coincidence in prescription, after some research I learned through patient information sites like this one provided by Guy's and St Thomas Hospital that the immune response that Sarcoidosis triggers, namely the clusters of immune cells called Granulomas, can occur anywhere in the body not just the lungs. I have a strong suspicion this is another Sarcoidosis flare up, but with the Granulomas either in my stomach or my intestinal tract this time. I won't know for sure until after I see a Gastroenterologist and discuss the matter further.

I am also being referred for an endoscopy [camera down your throat into your stomach] and will likely need a colonoscopy [camera up the other end] - Heads and Tails as it were. Given how traumatic the Fiberoptic Bronchoscopy [camera up the nose and down into the lungs] was last time, far and away the worst procedure I've ever had done, I'm dreading this. The Gastroenterologist will probably request a CT Scan with contrast solution just like last time.

In the meantime, I've been prescribed another drug, this one is called Domperidone which is an anti-nausea medication which works by tightening the muscles at the entrance to the stomach and loosening the muscles at the exit, the result is increased gut motility - in other words it accelerates digestion by moving food through quicker than normal and exciting the bowels. The drug is used for a number of different conditions, the main one being delayed bowel movements, or slow transit constipation as it's referred to; it can also be used to treat anxiety, and has a few off-label uses.

The good news is that since I started taking it about a week ago I haven't been sick, and I don't have to restrict my diet as much, I'm eating relatively normal at the moment. So I have some physical relief from my symptoms.

I should mention, on the point of anxiety, I never lost weight over the course of this year, my weight has remained more or less unchanged; the best way I can describe the vomiting is that about 95% of what I ate digested normally, but the 5% or so that remained would build up and refuse to digest until it had nowhere else to go but come out. It always looked the same, like melted butter, or an oil slick floating on water like in a pot of pasta. I have given genuine consideration to the possibility there is a mental component to this condition but I am reasonably confident that isn't the case.

The fact Sarcoid first started with the same symptoms leads me to think that's what this is again, which I am not particularly thrilled about. Sarcoid initially started with cold and flu like symptoms, then vomiting, and difficulty breathing, joint pains, and a rash on the back of my hands. The vomiting stopped after 2 weeks but the breathing gradually got worse until I couldn't walk up a flight of stairs without stopping midway to catch my breath. This time around everything started the same way except the vomiting has continued and got worse over time, I am having difficulty breathing but that is less often and nowhere near as extreme as it was last time.

In 2017 my Sarcoid was treated with corticosteroids [Prednisolone] which fried my brain, I couldn't concentrate for months, I was mentally wired but disoriented, and physically tired constantly this left me sleeping on average 1 hour per night, sometimes 2. I'm not excited about that being a possibility again - I don't want midnights to become my afternoon, thank you Taylor.

On top of all this, the other conditions that were explored were mostly written off e.g. Helicobacter Pylori which there is a family history of, diabetes, hyperthyroidism, blood pressure, and various blood tests, urine tests, and a stool sample were all taken and examined with nothing conclusive found. The one unanswered question is a Coeliac test which is particularly peculiar. It was ordered almost 3 weeks ago now, and the first week after the test when I rang for results the secretary told me the regional lab it was sent to had left a note saying they needed to refer it to a central lab - why, I don't know, and I am not sure the secretary was supposed to tell me that because none of the doctors have said why that would happen, and I'm constantly being told "Give it another week" every time I check for results.

With this test, as with life in general, I prefer it when people are honest with me and tell me what they are really thinking, I really fucking hate when people lie or keep things from me. I don't care whether you think you're "saving" me from unnecessary worry, I don't think you fully understand no matter what the truth is, that's never going to compare to what my imagination will come up with in the absence of clarity, don't underestimate how much someone like me can over-think something like this. Imagine the worst possible scenario you can think of dear reader, then make it worse, and you still won't be close enough to where my mind has gone. If you want to ground me in reality, then give me something it could be to focus on.

I've made a point to tell the people in my life right now that I'm not coping. No matter how much it may appear at times that I am, the ice that I am skating on is razor thin, the slightest weight added on top has broken me. There have been days in recent weeks, and nights, where I've just sat and broke down in tears. Friends have noticed I am unusually quiet or fixating on specific things as a coping mechanism to the point of becoming unresponsive. I don't know what to do right now, both in general and right here in this moment. It's 3:00 in the morning and I am wide awake because if I go to bed now, I'll lie in bed staring at the ceiling unable to sleep.

This should be easier for me having been through all this before, but knowing that previously having Sarcoidosis puts you at higher risk of several other things, I'm worried this might end up being something more, which is only fed by the reluctance of anyone to give me a straight answer; I know there are many different things that this could be, and too much ambiguity to diagnose anything in particular at this point, I just wish someone would tell me, "It could be this" even if it turns out not to be - that was the case with the theory it might be an ulcer, yes it's transpired that's not the case but for a few weeks that was enough to occupy my mind as a possible outcome. Now I'm left to ponder endless possibility.

I hate uncertainty.