My journey is not a short one and I am very transparent in hopes that I can shed some light on this horrid disease and fully allow my friends, relatives and those I don’t even know but are supporters, truly understand my journey both the ups and downs. Below is the full story and timeline of events up to today. Going forward I will add updates in the journal section. Thank you for being here for me! I am not the best at answering individual messages, texts, comments but know that I am so grateful for each and every one of you and if I have learned anything positive through all of this, it’s that I have the greatest support team one could ask for and I truly believe I wouldn’t still be here if I didn’t.
Where it all began: my stomach issues don’t date back to one certain date before May 2020. I have always had stomach issues dating back to infancy when my mom said I would drink a whole bottle and proceed to throw it up as quick as I drank it. They switched me to soy milk as a baby thinking I was allergic to milk. I spent weeks in the hospital when I was very young with the rotovirus where I was extremely sick and couldn’t keep anything down. As a young child I would need to go in any time I had the stomach flu because I would need ivs from getting so sick. Due to all of these stomach issues I developed a very very severe phobia to vomit called ematophobia which is actually quite common. It also runs in my family and genetics can play into it. Through middle school I had several months stretch where I would feel very full, sick and green every single night where I would just sit by the toilet in misery. They never really found out what it was but looking back the symptoms are identical to what I have experienced over the last two years. Throughout my teens and early adult life I have had bouts of extreme fullness and nausea issues that would last around a week and have had two past ED trips prior to 2020 when I had extreme symptoms. One of the more serious stomach issues I have had was a blood clot in my superior mesenteric vein (drains blood from your intestine) in 2007. Aspirus hospital had never seen one before and I was days away from my bowel dying because of it. Like your heart, when a large artery or vein closes off due to a clot or build up of cholesterol, collateral veins form. Collateral veins did form in my case which is the only way my intestines survived as blood drained through those veins. This will be important information later in my journey.
Day 1: May 9th 2020. A day I will never forget. I ate dinner around 4 and several hours later and through the night felt extremely full and nauseous for many hours. This continued everyday going forward that I tried to eat.
May 14th 2020: 1st ED visit
June 15th 2020: 2nd ED visit
June 18th 2020: 1st EGD
June 22nd 2020: 3rd ED visit
June 24th 2020: 1st GI appt
June 24th 2020: liver ultrasound
June 26th 2020: 1st Gastric Emptying Study (GES)
July 1st 2020: follow up with GI where we go over labs and results of tests. Was determined that my stomach was “sluggish” and I had mild gastropersis which means your stomach doesn’t contract like it should to propel food through to your intestines. As a result food sits in your stomach for much longer than it should and causes symptoms of nausea, vomiting, fullness, bloating and anorexia. A few of my autonomic nervous system labs were mildly off but they were not concerned about these. Due to my severity of symptoms and extreme weight loss already having at that point (down 40 pounds since May 9th) he referred to me to a GI doctor at St Luke’s.
August 14th 2020: I see cardiology for the first time due to tachycardia issues as well as dizziness and palpitations. At this time I had an ekg laying down and was told everything was fine and was taken off meds to slow down my heart rate. I had previously been diagnosed with POTs in 2014 by my PCP as she took heart rates sitting and standing and mine was over 40 beats difference. POTs stands for postural orthostatix tachycardia syndrome and basically means your heart rate becomes extremely elevated when you stand and you can experience fainting and dizziness when changing positions. POTs is an autonomic disease and many who experience it are young females. It goes very hand and hand with gastroperesis which also effects females for the most part.
December 17 2020: I see a GI motility specialist at St Luke’s. At this time I had lost 100 pounds since May and he considered my weight loss significant for the small delay my stomach showed. He ordered another emptying test and some changes in meds and wanted me to meet with a dietician. First time I was told “your head can make your stomach sick”. I was made to feel it was all in my head and that I had anxiety which made my stomach sick.
January 21st 2021: GES #2.
March 12th 2021: I have a CT scan as I was having abdominal pain near an old umbilical hernia surgery I had. My PCP called me the next day and told me I needed to get into vascular surgery as soon as possible due to collateral veins that were found on my report.
March 29th 2021: I meet A vascular/general surgeon for the first time. He goes over the CT and states that the collateral veins that had formed due to my previous blood clot in my intestines were now varicosed buldging and tangled together around my duodenum (first part of your small intestines that attaches to your stomach where it empties) he believes this is causing an extrinsic bowel obstruction and as a result my stomach can’t empty and I have an outlet obstruction. He also states that my stomach was the size of a watermelon due to it continually stretching for a very long time (he said years) as food could not properly exit. He states that this is very serious and wants me to have an angio to look at the state of my superior mesenteric vein to see if these veins can be removed or not.
April 2nd 2021: I have an angio done in interventional radiology where they assess my SMV. It is found that there is no function left and that it is completely occluded due to my prior blood clot.
April 5th 2021: meet with Surgeon who says the safest and most effective and only option is to bypass that part of my stomach so food has a new outlet. I cannot get rid of the collateral veins as they are needed to keep my bowel draining and alive. He states this would need to be done opening my abdomen as laparoscopic surgery is too risky with my collateral veins. If they would puncture one, I could die. For the first time I had hope that things would get better and I would be able to eat like a normal person again. I was very scared to have the surgery but felt it was my only option due to the severity of the collateral veins. Surgery was scheduled for May 3.
April 9th 2021: EGD #2
May 3rd 2021: Had a gastrojejunostomy via roux en y to bypass the native opening of my intestines to give food a new route. They did not change the size of my stomach like one would have for weight loss surgery. At this point I had lost 130 pounds and the goal was to stop the weight loss. I stayed in the hospital 4 days after he told me it would be 7. I had an NG tube which was the worst part of any surgery I’ve ever had. My throat was raw and I couldn’t talk and constantly wanted to gag!
After surgery I continue to struggle to eat more than one small meal a day except now it was much worse. I could no longer eat any protein whereas before I could only eat one meal a day, I could still eat good portions and have meat.
May 26th EGD #3
I continue to lose more weight and follow up with my Doctor. Feeding tubes were discussed several times at this point due to my extreme weight loss and my need for several rounds of iv hydration on multiple occasions. In October I am referred to a new GI that Dr works closely with.
October 6th 2021: EGD #4
October 15th 2021: meet with a cardiologist who specializes in electrophysiology who formally diagnoses me with POTs after doing extensive testing. I am put on daily potassium, fluid retention meds and a beta blocker. I am also told to eat 10,000 grams of sodium per day.
October 19th 2021: GES #3. Results show that my stomach is extremely paralyzed since May surgery compared to initial tests where it was only mildly delayed.
November 11th 2021: POP surgery to open native pylorus to give my stomach two functioning holes for food to leave the stomach.
November 14th ED #4 with heart issues. Get transferred by ambulance to Kenosha.
November 28th 2021: ED #5 acute gallbladder removal. Worst pain of my life!
Stomach started feeling better a couple weeks after gallbladder removal and I was able to eat protein a few days in a row!
January 2022 start having a ton of issues with bile backing up into my stomach now that gallbladder is removed and POP surgery leaves a wide opening for bile to back flow into.
Jan 11th 2022: GES #4 shows stomach 94% empty after 4 hours. Best I have ever had but yet still feel so sick due to bile.
Feb 2022: have a HIDA scan which shows bile refluxing back into my stomach from May 2021 surgery
Feb 8th 2022: EGD #5. Find stomach completely full of bile.
March 8th 2022: have open bowel revision surgery to increase the length of my anastomosis (intestine connection) to stop the bile reflux.
March 12th 2022: ED# 6 potassium level of 2.6 after several palpitations admitted.
March 24th 2022: GES #5 shows my stomach is hardly functioning anymore after most recent bowel surgery even though my stomach wasn’t touched during surgery. At this point my weight got down to an all time low of 138 pounds at almost 6 feet tall.
March 30th 2022: feeding tube placed. Worse pain than any other surgery!
See journal updates for continuation of timeline. Out of space here :)