Sorry this post is long but I'm freaked out scared badly and want to provide all the details I can to see if anyone else has or is going through anything similar and has any advise.
Some background info I had Roux en Y gastric bypass almost 10 years ago September 10, 2007. I had my gallbladder removed long before in 1997 dube to stones. 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 around 5 pm I experienced a stitch in my side kinda feeling out of nowhere as I was sitting driving my car. It developed quickly into a sudden extremely intense abdominal pain unlike anything I've ever felt in my life. I've learned to live daily with pain, I'm in pain management on daily opioid pain meds but this pain was in a class all it own. I've never hurt like this in my life not even when my appendix burst as a teen. 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 I took 60 mg of Percocet at once that couldn't touch the pain I caved in and went to the hospital. After multiple blood test, 4 internal pelvic exams, a vaginal ultrasound, a CT Scan, an MRCP and being seen by 4 different medical specialties with every single resident on staff in tow, my pain lvel decreased so I was admitted and given food. Pain came back right away after eating so I was diagnosed with acute pancreatitis. I stayed 3 days in the hospital, with no food or drinks, on serious IV pain meds, anti inflamitory meds and pushing heavy IV fluids. I only had ice chips to suck on. On day 3 I was put on a liquid diet. Finally pain free aftrer 3 days and tolerating liquids I got discharged. I was told to follow up with Gastroenterologist. a week later feeling pretty normal I went to a Gastro specialist in pancreas issues who 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 mm 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 bypass mine had to be performed thru a laparoscopic surgigical proceedure. It required both the gastroenterologist and my bariatric surgeon operating together going through the detached part of my old stomach to reach my pancreas thru the bypassed portion of my small intestine. I wasn't scared cause laparoscopic surgery was no big deal to recover from. I've had multipal laproscopic procudures over the years so easy peasy I thought.
On Dec 2 2016 I woke up in the recovery room with such severe pain that I needed multiple shots of Fentanyl to get it under control it was so intense. As I had expected there were 2 regular little incisions but there was another suprise one was a 2.5 inch/3 incision, I was from where scope was inserted the nurse kindly explained to me. I was never informed about the size of the incision to insert the scope being larger prior to the procedure. I stayed overnight in the hospital and then got released home the following day 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. I had a tugging/pulling/aching pain right at the large incision site that kept me totally immobile 3,to almost 4 full days and continued to hurt badly for weeks.For weeks afterward moving was hell. I still months later to this day sleep semi upright because my abdomin hurts to much to pull myself up.
I followed up with both docs about a week later who kinda acted like "oh sorry my bad I thought you understood it would be a large incision to accommodate scope". I wasn't even really upset about it cause having the procedure meant no possible future attacks of pancreatitis I'd been told. They both said the ERCP was sucessful. To me it was all worth the pain cause there just aren't words to discribe the pain of a pancreatitis attack.
My overall health hasn't been so great for about 6 months prior to the first attack due to malabsorption. I thought it was just attributed to my gastric bypass even though it hadn't been an issue over the past 9 years since my bypass until now. That malabsortion recently started causing malnutrition symptoms one of which is so healing is slow for me,even from minor scrapes/scratches.
My left side just hasn't been normal since ERCP. There's kinda always a dull ache and sometimes I have a stitch in my side type of feeling on my left side but I've just assumed it was just due to me slowly healing.
I had been told by the Gastronenterologist that the ERCP would resolve the acute pancreatitis issue so that I wouldn't experience pancreatitis acttacks again but guess what that wasn't true. Last Thursday March 16, 2017 a little over 4 months since my ERCP proceedure and out of blue a sudden severe debilitating attack of pancreatitis hit me.I chose no hospital for me this time last time was hell and total embarrassment. I had no fever with the pain so I decided to ride it out at home using my chronic pain meds without taking in any food/drink at all. I just sucked on ice chips for 3 days like I had in the hospital. Finally after almost 2 dayswith debilitating intense pain it slowly subsided to an just an extreme abdominal tenderness.
I'm now back to the same dull ache with the occasional stitch in my side feeling I've had the last few months daily since the ERCP. I called gastro surgeon first thing on 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 it's accompanied with a fever,,vomiting or diarrhea. They haven't even ordered blood work in advance. I feel like this is going to be a wasted appointment cause he's just going to ask questions then order blood tests and possible a scan or something for me to then go back in a week again. Then in the meantime I'm just helplessly vulnerable to another sudden painful attack dealing with the constant discomfort that's just become part of my everyday life. Stitch in my side is now pretty much a constant feeling..
Due to the gastric bypass I take multiple vitamin/mineral supplements and a probiatic daily for years that I've recently doubled up on since realizing I was experiencing malnutrician symptoms. I also recently started supplementing with extra protien as all my symptoms fit protien malnutrician signs.Since last week's attack I've stopped taking everything that isn't a prescribed medication just in case they may be aggrivating my pancreas.
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 the severe pain again. There was no official cause found for my original attack back in October. This time the attack came as 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 productive day for a change. 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 and where I'm from literally all the gastro doctors are together in a huge group practice affiliated with my local hospital so my options are zero for a second opinion without driving 2 hours each way to go somewhere else. I feel like all these issues,the malabortion, the signs of protien malnutrician, my recent weight loss and this recurrent suddent severe pain are related yet nobody's connecting the dots and doing anything to figure out the root cause of my health problems. Very simply put I'm not feeling healthy, my doctors don't seem concerned enough to make me feel safe in their care. I'm frightened of possibly having to experience that very 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.
Anyone been through anything similar? Any suggestions? I feel so alone.