Terri G.

I had Roux en Y almost 10 years ago September 10, 2007. I had my gallbladder removed long before in 1997. I have a very high pain tolerance. I've given birth to 7 children all naturally no pain meds each time. I've been a chronic pain management patient since 2012 due to an on the job injury. After 3 failed surgeries attempting to repair them both of my shoulders have multiple full thickness rotator cuff tears. I have 2 tears on my left side and 3 tears on my right side that aren't surgically repairable. I can handle intense pain.
On October 26, 2016 I experienced sudden extreme abdominal pain. I've learned to live daily with pain but this was different. I've never hurt like this in my life not even when my appendix burst. That night I went by ambulance to the ER after waiting about 6 hours hoping it was gas or something simple that would just go away on it's own. But when 60 mg of Percocet couldn't touch the pain I caved in and went. After multiple blood test, 4 internal pelvic exams, a vaginal ultrasound, a CT Scan, an MRCP and being seen by 4 different medical specialties I was diagnosed with acute pancreatitis. I stayed 3 days in the hospital, with no food or drinks, on serious IV pain meds and pushing heavy fluids. I only had ice chips to suck on. On day 3 I was put on a liquid diet. Finally pain free tolerating liquids so I got discharged. I was told to follow up with Gastroenterologist. Gastro specialist said I was a rare kind of person who makes stones in my common bile duct. I had passed a stone that had dilated my duct to 17 cm in order for it to pass into my small intestine. I was told I needed to have an ERCP to clean out bile duct and have the duct surgically enlarged to guarantee no further stones would get stuck. An ERCP procedure is normally performed through the esophagus but due to my rearranged plumbing from Roux en Y mine had to be performed laparoscopically. It required both the gastroenterologist and my bariatric surgeon together going through the detached part of my old stomach. I wasn't scared cause laparoscopic surgery was no big deal to recover from.
On Dec 2 2016 I woke up in the recovery room with such severe pain that I needed multiple shots of Fentanyl to manage it was so bad. I had 2 regular little incisions like I had expected and one 2.5 inch incision from where scope was inserted the nurse explained. I was never informed about the size of the scope incision prior to the procedure. I stayed overnight in the hospital and then got released home in terrible pain. I hardly could move, it felt like my guts had been ripped out, stuffed back in and might burst thru the large incision site any second. Tugging/pulling/aching pain right at large incision site that kept me totally immobile 3, almost 4 days. For weeks moving was hell afterwards. Followed up with both docs who kinda acted like oh sorry my bad thought you understood it would be a large incision to accommodate scope. I wasn't really upset cause having the procedure meant no possible future attacks of pancreatitis. To me it was all worth it cause there just aren't words to discribe the pain of pancreatitis.
My overall health isn't great right now due to malabsorption that recently started causing malnutrition symptoms so healing is slow for me. My side just hasn't been normal since ERCP. There's kinda always a dull ache and sometimes I have a stitch in your side type of feeling on my left side but I've just assumed it was just due to slowly healing.
I had been told the ERCP would resolve the issue so I wouldn't experience pancreatitis again but guess what that wasn't true. Last Thursday March 16 2017 a little over 4 months since the ERCP and out of blue a sudden severe debilitating attack of pancreatitis. No hospital this time for me, last time was hell. I had no fever so I decided to ride it out at home without any food at all just sucking on ice chips for 3 days like i did in the hospital. Finally after almost 2 days the pain subsided to an extreme tenderness. It's now back to the same dull ache I've had the last few months. I called gastro first thing Monday for an appointment. I want answers but can't see doc till March 29th. I was told to go to the ER if pain returns and I have a fever, vomiting or diarrhea with the pain.
Meanwhile I'm scared to eat, I'm scared to not eat, I'm afraid that any second without warning I'll get hit with severe pain again. No cause was found for the original attack in October. This time I was in the middle of coloring my hair, waiting to rinse it out, just sitting down plucking my eyebrows feeling like I was having a really good day. Then bang one second zero pain next second such severe pain it was hard to draw in air to breath it hurt so bad. I'm terrified I'm going to die. I have no faith in the doctors. I feel like all these issues are related and nobody's doing anything to figure out the root cause of my health problems. Very simply I'm not feeling well, my doctors don't seem concerned enough to make me feel safe in their care. I'm frightened of possibly having to experience that intense pain without any warning again. I'm terrified that if everything together continues unchecked this could ultimately lead to my death. I'm just so scared.