My Story: How it all began.
The reason I use the term "invisible illness" all the time is because there is a big part of me you can't see and vision, or maybe even comprehend most or any of the time. That part of me is in my abdomen, sits beside my liver, behind my stomach under my ribs, very close to the spleen & is my pancreas (along with my bile duct). It's such a vital organ & can sit dormant & not cause anyone any issues their entire life if it's working properly, their islet cells making insulin correctly & staying the correct size, with one main duct draining into the correct place (the bile duct & pancreatic duct connect to the Sphincter of Oddi) into the duodenum & so forth with digestion. THE problem is, mine doesn't do that. The start of it all was, I was born with TWO pancreatic ducts, which in turn will be the entire culprit in time(just remember this little thing). December 2011 was the beginning of all my problems for me. I remember I ate pizza for dinner and in the middle of the night, I woke up & got extremely sick. I was working in the OR & the flu was going around really bad at work, so I figured I had caught what everyone else had. Well I was sick for over a week, with increasing pain in my abdomen. I went to the doctors & they treated me for the vomiting, nausea, dehydration & scheduled a whole abdominal study for when I was better to make sure it wasn't anything further. We scheduled an abdominal x-ray, abdominal ultrasound, upper GI study to rule out ulcers, acid reflux, aortic issues & any other issues. Everything came back negative except the labs & ultrasound. My bile duct was inflamed as well as my gallbladder, along with findings of sludge within the GB. We scheduled the removal of the GB & that was done. I specifically asked if this would make me feel better because at this point I was MISERABLE, in intense pain, & just really sick. I was told "OH yeah, you'll be good as new". WELL the GB was removed & I was even worse than before. I was admitted to the hospital within a week post removal, my liver enzymes & pancreas enzymes were off the charts, I couldn't keep anything down & no could understand why I was so sick. They did an MRCP, EGD ultrasounds, CT scans & just couldn't figure out what was going on & why my labs kept going up & not down. After a week in the hospital, my labs started to resolve some, but I was still in intense abdominal pain, absolutely miserable & just couldn't really function. They put me on a low-fat diet at discharge, from being on NPO & clears in the hospital that first time around, & I was scheduled to see a specialist. I continued to see doctors in Greenville without any resolution to what was causing my abdominal pain & elevated enzymes. I was admitted one additional time for elevated enzymes within this time period for the labs & abdominal pain without a resolution.
In November of 2012 I went to MUSC & had my first ERCP. They performed pressure testing that showed pressure testings triple what the normal pressure should be in the bile duct at the time of testings. This is a confirmation of Sphincter of Oddi dysfunction. During the ERCP the specialist also found a Pancreatic Divisum. Pancreatic Divisum is where you're born with two pancreatic ducts & the MUSC specialist was pretty certain this was the cause of the increasing abdominal pain (as well as the SOD) & the elevated enzymes. I was in early stages of acute/chronic pancreatitis. I was prescribed a low dose narcotic pain medicine to try to reduce the pain & keep the pancreas inflammation down to stop the attacks from happening again. In June 2013, I went back to MUSC, had another ERCP, my pancreatic duct & biliary duct pressures were double & triple the pressures they should have been again, which meant the sphincterotomy they did the first time around didn't help as much as they should have. They performed another sphincterotomy on both ducts, (the major duct of the pancreatic duct not dorsal, or smaller duct in my case) & put a stent in my bile & major pancreatic duct that should pass on their own in some time. The stents were suppose to keep the ducts open longer & help with the pressure build-up & pain. I felt no relief in that therapy & almost immediately was back in pain, which was a real bummer. Every procedure up until that point I was CERTAIN was going to be the last one.. I truly was over surgeries & procedures & ready to be better!!
In December 2013 I started seeing a pancreatic specialist here in Greenville, who has truly been a God-send blessing!! He has done a lot of surgeries on me, which has been a negative effect, but he has truly helped me a lot to get to where I am at, which in turn is a positive. I have an official diagnosis of chronic pancreatitis as of January 2014 after having my first ERCP with my doctor & he also said how sensitive my pancreas was. I have been admitted close to if not 15+ times in the last year to year in a half... I've had to have ERCPs every 2-3 months due to my stents not holding out in my body like they're suppose to. I've been receiving successful stent therapy in my biliary duct for my Sphincter of Oddi dysfunction, & the stents should last up to 5 months & my body tears them up in 2-3 months with stones & sludge build up. My major pancreatic duct is SO incredible small, my doctor couldn't even get a guide wire through it, to clean it, much less a stent to open it.. my dorsal duct, which is suppose to be the small of the two ducts has held up & my doctor has been able to stent that duct, although everytime he goes in to clean it out, it's very sludgey & messy & it's scarring everytime he goes in & is having to attempt to put a longer stent everytime he goes in.. Sooner or later he will run out of duct to stent & it'll all be scarred.
In February (Well the last week of January) I was put on full pancreatic rest, which meant my doctor wanted me to try TPN for 6-12 weeks.. those 6 turned into 12 very quick.. NPO but minimal clear liquids SUCKED. I did it like a champ though. Mom & I would hook me up & we'd walk the mall daily with my TPN running & I'd get my daily exercise..
With having an invisible illness, you hear ALL the time, how you don't look sick, there's nothing wrong with you, how you're not sick, "you look fine so you should feel fine" & the list continues. It wasn't until I was put on Pancreatic rest & had a PICC line placed & on continuous TPN, that people kind of got the hint how serious my illness really was. Even then, I had people coming up to my face, when I was connected to my TPN, IV tubing hanging out of my arm & everything, telling me "there's nothing wrong with you," Pretty much insinuating it was all in my head.. Yeah I am making up this extreme pain, TRUST ME, let me give you 30 minutes of the pain CP causes & I am sure you'll give it back. NO one wishes for this, and I sure as hell wouldn't wish this on my worst enemy!! ALWAYS remember, just because someone looks a-OK on the outside, doesn't mean they can't or don't have a fierce disease eating them alive on the inside.
Our hopes the pancreatic rest would decrease the inflammation did not work much. It worked for about 2.5 months & I had another major attack. In July, I was hospitalized almost the entire month of July (except 6 days!! Can you say I was OVER that place!!) I had a surgery called Splanchnicectomy, where they cut 4 port holes into my back, deflated my lung & cut the nerves connected to my pancreas to try to cut down on my pain receptors in hopes that would help cut down on my pain I've been having. We thought we had a very successful surgery; a home run if you will; unfortunately my results have not been the results we were hoping for! My pain was reduced for a while, but stress levels & situations increased those levels intensively.
In January of last year my doctor mentioned to me about having my pancreas removed & I honestly tuned him out. I wanted nothing to do with the conversation or the situation. I didn't want my pancreas removed or have a major surgery, so I basically didn't want anything to do with it. I wasn't happy he was bringing it up after my first major hospitalization in about a year & I felt like he was giving up on me, so I said just give my body some time; I'll get better..
We'll now a year & a half later, I've sucked my pride in, unfortunately & I told my doctor I'd listen to what the doctors he wanted to send me to say at least, but I wasn't committing to anything yet... SOOO I went to MUSC, TPN backpack & all, and I listened to what they had to say, I really liked the surgeon, Dr. Kat Morgan, & the whole transplant team & very caring & supportive. I did the entire workup--which LET ME TELL YA isn't easy.. 10 sticks in 3 hours.. NO THANKS NOT AGAIN (HA that will happen again I'm SURE!) I met with the psychiatrist to make sure I wasn't crazy & that I had a brain.. I DO! I have a good support system, apparently according to MUSC Behavioral Medicine lol, and I am fit & cleared for surgery, whatever that means LOL.. Honestly I don't think I'll EVER be completely ready for this surgery.. I'm VERY thankful I met an amazingly wonderful lady down there who will be my forever friend who had the surgery & I've already become very close with her.. She's been wonderful with questions I've had, a shoulder to just talk too & text just about anything too.. & We're so much a like, with us both having SOD & pancreatic divisum because that's so rare.. & so she could relate to my situation very we'll to my before & she'll be there to help a lot post surgery too!! I'm very thankful!!
My current situation is awaiting a surgery schedule date for a total pancreatectomy. I just recently came out of a hospitalization & surgery for a stent exchange & I am praying & willing my pancreas to act right until this surgery so we don't have to aggravate it until then. The more you touch the pancreas & irritate it, the more it will become inflamed & the more my islet cells can become damaged & I need those little things to be as healthy for me & my transplant as possible!!
I've tried every alternative out there before coming to terms with this option. I've tried all the medical intervention given to me; pancreatic rest (feeding tube/TPN), clear liquids, full liquids, NPO diet, low-fat diet under 20g a day for over 2 years with no results, numerous ERCPs, stent therapy, EUS, MRCP imaging, acupuncture, herbal therapy, massages, antioxidants, any diet you can think of I've tried (gluten free, diary free, etc): nothing has altered the pain level or made any of the symptoms go away.
I've come to terms that you can do the best you can in your life but in the end it's up to God to do the rest. It's his ultimate plan & you've got to leave it up to him to finish it & be at peace with what you decide & how he chooses it for you. Be Brave.
My Options: A Trade off, NOT the Cure.
I hear this DAY IN & DAY OUT: When will you be
Unfortunately this will NEVER be the case in my case. I'll be TRADING one disease for another.. yeah sounds pretty grim in a way, but in my eyes for what I've been going through & what I could be trading it for.. HEY I'll take it honestly.. The uncertainly is scary as hell, HECK YEAH! and I have fear of the unknown ALL THE TIME.. I think about it all the time.. but I can't let that part get to me, I have to just give all of that fear up to God & find peace in my decision. If I didn't that fear will eat me alive & it will truly hinder my recovery & I CAN'T HAVE THAT nor have that STRESS on my body!! NO GOOD!!
FIRST OFF, to get the big elephant quest out of the room, I can't have a whole organ pancreas done. I am NOT a candidate for that type of transplant nor do they truly do them very often. They are EXTREMELY rare & when done, they are typically done whole pancreas, along with a kidney & given to brittle type 1 diabetics who's pancreas' aren't working for them at all, as well as are they on dialysis. This is why I would not qualify for this, & let's pray I never have to think about this!!
The surgery is called a Total Pancreatectomy with Auto Islet Cell Transplantation, meaning they totally remove your pancreas, then they harvest the pancreas to receive as many of the islet cells as possible for your auto(own self) transplant of those islet cells(insulin making cells). The normal, healthy pancreas has approx. 1 million islet cells & who's to know how any they'll receive on your own harvest (a good harvest a good hundred thousand if not more!!) They are transplanted into the liver through the portal vein, & even when they're safe in their 'new home' some can die off, because our livers are "hostile environments". Once the pancreas is removed, you automatically become a diabetic. With every 'bout of pancreatitis your pancreas more than likely lost some islets along the way with the inflammation so you need to think & plan for that as well. If you're not diabetic now, you should plan on becoming type 1 diabetic after the surgery because who's to know how many islets they'll harvest & what's to happen post surgery. Plus, they tell you to plan on becoming diabetic post surgery, & it's called surgically induced diabetes but it's truly type 1 diabetes. Plan for the worst & pray & hope for the best. Along with the pancreas being removed, they'll remove the gallbladder, if not already removed, spleen, because it has a large blood supply with the pancreas & there may not be a 100% chance of all pancreatic tissue removal if all left; & duodenum. This is a very major surgery & according to one of the hospitals that does this surgery "The day after surgery You will be getting the same amount of pain medication that the whole hospital uses in a day (all the patients combined)." It's been quoted that this surgery is one of the worst surgeries known to man, especially in the recovery period. It can take months after the surgery for recovery to progress, and take up to year for your body to fully recover. This DOES NOT mean you will not feel like yourself after a few weeks, or months, but this does mean it is a very slow process and if you are considering this surgery for yourself, remember you can not get frustrated when you have some good days, followed by really bad days & vice versa. I am striving for that day when I get to say I am offically OFF of my heavy pain medication & hopefully nausea medications!! I'm dreaming of those days!!
Coming out of the surgery, I'll have about a 50% chance of having diabetes forever, although I'll have to treat myself like a diabetic after surgery at least minimum a year with checking blood sugars, insulin injections, diabetic diet, every 3months A1C checks to check the islet cells & my body & may be longer or forever. I've spoken with my family a lot about ending up with post-surgery diabetes & their thoughts about trading the pancreatitis for diabetes, & every one of them have all been pro-surgery & have all expressed how I can't go on the way I am right now.. every month/2months in the hospital, constant pain, medications, always pretty bad days, unable to eat due to CP, where as I can trade all of that in for a life in my late 20s, healthy, able to eat, diabetes?!, but healthy outside of the hospital!! "DO IT!"(very firmly)
Now I know what you may be thinking; WOW, why would you want to go through such a surgery with all that pain, just to trade one disease for another; Well because I'm ready for the NEW/old me to come back.. For the sickly Tiff to go away forever. The discoveries in diabetes in just the last few years have been amazing, and I figured my ending up with diabetes, I can do that. Who's to know what the medical field will have out for diabetes in the next few years, much less 10 years for diabetes you know.. but chronic pancreatits.. I may not be able to hold on 10 more years for that to happen.. much less 2 more years with this disease eating at my organs every time I have an attack & sends me back into the hospital. My doctors are telling me it's a matter of WHEN not IF as to when I have that surgery & when that WHEN happens, it'll be too late for my pancreas at that point, & the organ will be too damaged & when they do the surgery they'll just be throwing it into medical waste.. I'll end up without any islet cell retrieval & I'll be a brittle diabetic.. the worst possible.. extreme high's & lows, my sugars will not be controlled very well..pump required because the highs & lows are so dangerous & they put your body at so much risk! I'll be at risk for extreme medical problems with limbs, vision problems, kidney issues, along with SO many other issues.. I can't take that chance.
So in the end, with my options being very thin at this point, I am following my faith in God & prayers, but going with my gut, as well as my family members guiding me along & heading in the direction of removal of the pancreas. Getting the diseased organ out to solve the problem seems the right way to go..God will be with me every step of the way!!
There are SO many of us out there that aren't diagnosed yet & are suffering just as I did for years.. a lot longer than I did unfortunately & we get brushed off unfortunately as "drug seekers" Pancreatitis is SUCH a dangerous disease & if left untreated can result in tissue death, reacurrent attacks, kidney damage, damage of liver & other organs as well as even death of extreme cases. The pancreas is such a sensitive organ than many forget about until it's sick or damaged for good!
Thanks for sticking with me through this extremely long blog post & wanting to learn more about me & SO many others dealing with this horrid disease. Any awareness spread is awareness!! Much love to you guys!!
XO -T
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