This is my short history from Fen-Phen to RNY Gastric Bypass. Come along for the ride!
I’m only covering the first two medical steps towards my taking GLP-1 medications because I have not gone into detail about them yet. I promise not to go in too deeply with this. That would take a book. (Hmmm… a book. What a dandy idea!)
1996: Fen-Phen
I was diagnosed with Type 2 Diabetes at 35 years old. The doctor told me about Fen-Phen, two medications that, combined, would help me lose weight. Fenfluramine and Phentermine and I got along great. I felt amazing! I had always had this low hum of “voices” in my head saying, eatthatfindfoodwherecanyougetfoodraidtherefrigeratorwheredidthekid
shidethecandybuythefrenchfriesget3ofthemdon’tstopeatingyou’renotfull… ad infinitum. The Fen-Phen stopped those voices. Now it’s called “Food Noise” or “Food Chatter.”
I lost 111 pounds on Fen-Phen in 19 months.
Then Fenfluramine was removed from the market for causing mitral valve prolapse. I had a fit and went to the press and then went on a short little tour of talk and news shows… CBS This Morning, Montel Williams Show, 48 Hours and several local shows and also in the Orlando Sentinel newspaper. Then after my crankiness, as well as hinting I had a stockpile of the medication, I learned I had the mitral valve prolapse and immediately went off the meds.
I went back on CBS This Morning, sat with Dr. Bernadine Healy, a cardiologist who watched my echocardiogram live on TV. In a previous interview, she’d told me I needed to go off the medication. I was stubbornly trying to keep myself healthy and lighter-weight (and by “lighter,” I mean 220 pounds instead of 330 pounds). Dr. Healy, who passed away in 2011, would, in 1999, go on to be the President and CEO of the American Red Cross. She had already been the head of the National Institutes of Health in 1991.
Alas, I was not destined to stay healthy or smaller. I got fat again. And fatter. The picture below of me swimming was about 6 months after I stopped taking Fen-Phen and had regained about 50-60 pounds.
But I kept swimming!
2001: Roux en Y Gastric Bypass
I had my Open RNY (as opposed to being done Laparoscopically) April 5, 2001 (which cost $30,000 cash which came from the Class Action Lawsuit I won against the makers of Fenfluramine for my now-faulty heart valve), weighing 360 pounds. I lost 190 pounds in one year and another 20 soon after, taking me down to 150. All labs went normal and I was going to the gym 5+ days a week.
Then I got something called coccidioidomycosis (also called Valley Fever) in 1993 and was practically bedridden as well as on 400 mg of fluconazole (Diflucan) a day for three years. I lost my hair, traumatized my liver, got a slew of DVTs and blood clots, and slept. A lot.
While I had active cocci, I began eating what I could keep down. I was on itraconazole and voriconazole before they settled on fluconazole and the first two made me barf several times a day. I’m sure people thought I was pregnant as I would pull over to the side of the road to throw-up at least twice on the way to work. I carried grocery bags in the car for when I was heading to a birth (I was a practicing midwife at the time) and couldn’t stop to barf.
By the time 2007 came along, I was already re-gaining weight. It ended up taking 19 years to regain from 150 to back to 360. I eventually surpassed that and was 405 in April 2022.
Because of the RNY, I now have to have bi-monthly iron infusions (recently my iron labs were so bad I had three infusions in one week) in order to get iron. I went 15 years with severe anemia thinking I was doing something wrong trying a dozen different iron supplements, when it was the RNY that was the culprit. I also have osteopenia in my back and left hip because I can’t absorb calcium. Again, the RNY’s fault. My Vitamin D was in the toilet for 15 years and I now take 50,000 iu 4x a week. The recommended daily dose is 400 iu. (Note: The Endo appointment I had an hour ago had her lowering my D to 50,000 iu twice a week – because I have lost so much weight my D labs were too high! A first for me!) The way my new stomach was shaped, I no longer have access to the intrinsic factor in the bottom of my stomach so have to give myself B12 shots once a month.
My surgery was open, cutting me vertically, stem to stern. I was too fat to have laparoscopic surgery.
Over the years, I have had 4 incisional hernias directly adjacent to my RNY incision spot and they all needed lap repairs. Every incision into the body can create scar tissue on the inside… adhesions. I have had 2 other hernias at the laparoscopic sites I had from the previous hernia repairs. I had my gallbladder removed laparoscopically and have had three GYN surgeries (two laparoscopies and a Pfannenstiel laparotomy). Because of these ten surgeries in my abdomen, I now have adhesions that periodically curl around my intestines like vines on the trellis. When that happens, it is hit or miss if I will end up in surgery to untangle them. So far, I have been lucky and complete abdominal rest (not eating for a few days) has loosened the strictures and have avoided yet another abdominal surgery. When I get them, they hurt worse than labor… and I had kick-ass long labors.
Was the RNY worth these medical issues? If it was today, I would take the GLP-1s over the Gastric Bypass any day of the week.
Complications vs. Side Effects
The list of my Fen-Phen and RNY Gastric Bypass complications are above.
Let’s remind ourselves of the side effects of GLP-1 medications:
- Nausea
- Vomiting
- Diarrhea
- Constipation
After reviewing my own long-term complications of both the Fen-Phen and the RNY Gastric Bypass, suddenly the GLP-1 side effects look rather benign.
It’s true, we don’t know the long, long term possible complications yet. Some of what we suspect only manifests in mice so far.
My Future Is Glorious!
A question I’ve gotten several times is if I am afraid of long-term consequences from the Trulicity or Mounjaro? My answer is not at all. Look at everything I’ve made it through!
I’m not going anywhere.