@Dmitri Do they have any idea where in the GI track the blood is coming from? Have you reacted badly to sedatives before? I am wondering if the test would be worth it of if too high or a risk if you have possible MCAS/severe allergic reactions?
The blood comes in streaks and looks relatively fresh, so I would assume the bleeding originates from the intestine, where I frequently have tearing pains. This was at its worse one time in June 2010 when I was hospitalized after eating rice that was too sticky. After the next meal 30 minutes later, I started having intervals of violent spasms and cramps in my lower abdomen from which I dropped on the floor. These attacks were then followed by bowel movements. before finally stopping. This still happens several times per year. I can tolerate local anesthetics ending in -caine but general anesthesia sounds riskier.
Am so sorry and maybe the Ketotefin and all meds are reactive b/c of the GI issue itself? I was hoping it might be a food dye or filler issue so you could get a purer form but it sounds like you already did that and just do not tolerate it. Have you been tested for MCAS? (apologies that I was not able to re-read the whole thread at present but hope to later.)
Also, I think you mentioned in one of the posts that your issues started with an antibiotic and was curious which one? I hope your last few days have been better and you have had some relief of your worst symptoms.
I was disappointed from inability to tolerate ketotifen (and now zyrtec too), it just looks like I am sensitive to strong chemicals in general. When it touches my tongue, it causes a stinging pain, I can only imagine what happened further down. I have been trying to get tested for MCAS since it just seems so probable, but so far, my physicians were only able to test for tryptase and chromogranin A, both of which were in the normal range.
The first antibiotic reaction was at age 1, levomycetin taken shortly after diacarb. The second antibiotic was isoniazid at age 3, when I was misdiagnosed with tuberculosis. I can't remember the first incident, but I remember how horrific the reaction to isoniazid was - whole body became red, vomiting, fever, sleepless nights, trouble breathing, pain, etc. I don't know which one affected me more adversely, perhaps I would be functional were it not for the isoniazid. Oftentimes, I wished it had just killed me instead of leaving me with an injury worse than death. Another dangerous reaction I had was to prednisone some years after that. That's yet another reason why I suspect MCAS so strongly, because patients were documented to have an inability to tolerate antibiotics and corticosteroids.
I had severe abdominal burning and IBS the past few days, but I managed to improve the sinusitis pain temporarily with strenuous exercise, which tends to help on lucky days with certain problems (does nothing directly for GI symptoms, though the sinusitis feels like it radiates from my abdomen, and it especially gets out of control if I eat a trigger food). Speaking of which, what does a positive response to exercise mean from a MCAS context? I know that many report the precise opposite - flares after exercise.
The sinusitis can also be slightly numbed if I press down my abdomen strongly on something solid to interfere with blood flow for a prolonged period of time (dangerous, but the pain is too extreme and I have no choice). Along with the sinus headaches, I still have disabling headaches on the sides of my head that I think are radiating from my chronically stiff trapezius/neck region. This was the pain I feared the most until the chronic sinusitis kicked in together with IBS-D several years ago.
