u/RryRvnn

32F 185lbs today, 250lbs March 2025 5”10

Previous smoker, barely drink, daily marijuana use

Diagnoses:
4 splenic artery aneurysms 1.3-9.8cms—coiled
Splenectomy
Hysterectomy
Chronic portal vein thrombosis secondary to splenectomy
Thrombophilia
“Chronic pain”
“”MCAS”” (this is simply not true)

Meds:
Gabapentin 6-1200mg TID
Wellbutrin 100mg SR
Eliquis 2.5mg BID
Slynd OCP
Cromolyn sodium 40mg/100ml QID
Pepcid 40mg QID
Clonidine .1mg PRN
Benadryl 20-50mg QID/prn
Claritin 10mg daily

In March of this year, I had two infected wisdom teeth that were removed by a sketchy emergency dental clinic. Afterwards, I couldn’t eat for 8 days because of postprandial pain bad enough to put me in tears, rolling around on the floor screaming after one bite of *anything*.

The pain is on the right side. it’s an all-consuming, twisting knife pain that overshadows absolutely everything. It radiates into my back and my shoulder. I started using a stop watch after swallowing and it starts consistently around the 4 minute mark and then gets progressively worse for 2-4 hours until it calms down.

When this first started, I went to the ER where they found elevated ALT levels (300-400) and admitted me for 5 days. The hospital ran:

HIDA scan—abnormal only in that CCK injection was so painful the tech called a code because I wouldn’t stop screaming for 20 minutes until someone ran in with IV fentanyl.

CT scan—normal aside from a common bile duct dilated to 1cm.

Abdominal ultrasound—normal aside from the above^^

Swallow study—normal

Gastric emptying study couldn’t be completed because I physically could not eat even 1/2 of what was necessary.

Since then my doctor has run so many tests I don’t even know which results to put up here. Essentially everything is normal or normal-adjacent, aside from my iron/vitamin levels which were so scary back in March I’m nervous to have them redone.

To my PCP, the most significant result was my blood histamine level, which was 210 on a (relatively) normal day with a fasting blood draw.

This lead her down the MCAS rabbit hole—NONE of these treatments have done *anything* at all. In fact, the only thing the cromolyn does is cause a different kind of stomach pain that i simply cannot handle on top of everything else. The antihistamines make me feel like dehydrated garbage on a summer sidewalk. I only continue taking them because they do *something* to calm me down.

They attempted to do a colonoscopy/endoscopy in June—unfortunately, I had a reaction to the prep and ended up back in the hospital for 3 days on fluids.

6 months later, I’ve lost 65lbs. I can do maybe 4-500 calories a day on oral dilaudid if I’m really lucky. All those calories are from liquid protein shakes.

Other symptoms include; bright green diarrhea the consistency of straight water lasting for 10 weeks, vomiting any time I try to swallow more than 6 ounces of anything in under 3 hours, dizziness, vision changes, heart palpitations, joint pain, and I’m now so hungry I cannot sleep for more than 2 hours.

I’m doing absolutely everything I know how to do. I’ve been to the ER 30+ times this year. 90% of the time I just get sent home.

I’m so concerned about myself. I can’t even get up without help anymore and there’s nothing I can do to force feed myself any more.

I was in the ER all last night. They sent me home and told me this is a PCP issue. My PCP says I need to go back immediately and demand I be admitted for a PICC line. I cannot force the hospital to admit me. She also told me a direct admit “isn’t even a thing”.

I’m absolutely terrified. I have no idea what I’m supposed to do. I don’t even feel like I’ve just typed out a coherent thing here. I’m having such a hard time thinking I don’t know what to do.