Wednesday, December 26, 2012

Updates and medications

Truth be told, I'm a bit surprised at how tame this blog has been since I started it. I started the blog not too long after I came home from my 5th hospital admission since May. I'm not even sure how many additional ER visits there were on top of that. During all of that I had 3 or 4 ERCP's (Endoscopic procedures performed on my pancreas to clear my main pancreatic duct and place stents in to keep it open), vials and vials of blood stolen, lots of pain meds and a lot of pain. It was what answered the question irrefutably that the surgery I'd been putting off for two years wasn't optional anymore. Now I've been home for about a month, and I've been doing really well. When I saw my doctor a couple of weeks ago he said he thought it was the healthiest he's seen me look in months, which is awesome. I may even get to skip my January ERCP if this keeps up. That would be a giant plus. Sometimes that is just what happens things magically settle down.

That being said, we also seem to have finally hit on a good combination of meds for me and it's made a huge difference. I have energy again and I feel like myself again. I'm not overwhelmed with nausea and puking all the time which is wonderful. Trying to find the right anti-nausea medications was like throwing a needle in a haystack. It's taking two different meds to keep things in me where they belong. I'm on meds and dosages that people would think belong to a cancer patient, even my doctors were on their last try with these ones, so I'm really glad they are working and I can function on them.

I wanted to talk about medication, and scheduling and how it is so difficult. I know that a lot of people suggest things like a pill timer, reminders on your phone or even a pill organizer, but those things don't really work for me. I have a lot of trouble with medication. First of all, I hate pills. Half the time when I swallow them I automatically gag and try to get them back up. It makes knowing if I can't get my pills down because I'm sick or just having a bad pill day a challenge.

Second of all, all of my pills have to be taken at so many different times. I take 4 pills when I wake up, typically in lieu of breakfast. Sometimes I'll have a snack after, but my appetite is still lost in the pre-hospital days so breakfast is a challenge. Also, some mornings I get up and just jump into something and morning meds happen later at like 11 or noon.

Then meds around lunch are difficult. One pill needs to be taken 30 minutes before I eat, two pills just as I eat, and one when I am done eating. Dinner is similar with 2 pills before I eat instead of one.

Night has just two meds right now. It should probably be 3.

I also have scores of as needed meds that when I need them, they are there. I can respond to pretty much any medical state I might find myself in on my own. Which makes me saying that I need to be in the hospital all that much more alarming. I hate meds, but I've come to be really good about them. I still definitely miss here and there and trying to plan 30 min before I eat is impossible. Sometimes I end up waiting an extra 30 minutes to eat just so they can kick in first. My point is more that I'm lucky that my doctors have trusted me to learn how to take care of myself, that I know what I can mess around with and what I can't and when I can handle a flare myself and when I can't.

It also makes a big difference how much I know about a lot of my meds. When my doctor goes looking for her pharmaceutical reference book and I already know the max dose, the standard dose, the standard and off-label usages. Asking questions and knowing about what you are taking is so important. It really scares me when I sit in an ER and hear someone say that they are taking a pill because their doctor gave it to them and they don't know why. That scares me.

Since I know that advocacy within the medical system is something that lots of people with chronic pancreatitis have problems with maybe next time I will talk about what I do to help advocate for myself during a flare and the ER.

Wednesday, December 19, 2012

In Between Times

There is no set way to have chronic pancreatitis, it's different for everyone. Some people are constantly in pain, and don't experience any difference between being in a flare or not, it's just always pain. Some people have low levels of pain on a pretty much daily basis, and then flares of greater pain. Other people have times of no pain, low level pain, and flares. It depends on your body, to a certain extent how badly damaged your pancreas gets and a bunch of other things that they haven't managed to figure out yet.

For me, I can have times when I have no pain at all. In those times I can manage to forget that I have pancreatitis. Of course that works a lot better when there isn't a major surgery looming over your head. Days when I commit myself to everything and manage to forget that I have limitations because I'm busy impressing myself with everything that I've managed to accomplish. Those days usually get me into trouble later. I also have days that range between low and mid level pain. Those days depending on what is happening and when the pain starts I try to stick to my routines. Most people don't know that I'm in pain but once it reaches a certain point people start to ask. Those are usually days when my pain medication isn't working as well as I'd like it to. Now I'm on new medication though, so we'll see. Those days can be hard because I'm trying to be the person I can be with no pain only with significantly more pain.

Then there are the flares. Sometimes I can handle them at home and sometimes I really can't. If my pain meds work, so long as I don't get too dehydrated anti-emetics and pain meds are my best friends for a few days and then my pancreas calms down and the world is okay again. Sometimes though it is sudden, onset for no reason, and even if I could get meds down between the pain and the nausea, they wouldn't do much. I remember once ending up in the ER where they were telling me that I should just basically take three times my dose of pain medication to keep the flare under control. That is the other weird thing about a flare too, sometimes if you can get on top of the pain and the nausea in the ER, you don't have to stay. I've been sent home from the hospital a few times now, and sometimes it makes me mad and frustrated, but it isn't often the wrong decision, I haven't had to go back.

What I wanted to talk about though, were those between times. The times where you don't really have pain or it's just low level pain, that I guess because I live with pain for me is no big deal. Having grown up with this pain I don't know how anyone else would rate it, but for me it isn't even worth medicating most of the time. Sometimes it is really cool to be in that in between time. It's where I'm at right now. My body is finally feeling pretty recovered from the last few months, some new medications we are trying are kicking in, and I'm being productive like I haven't done anything since September. In fact today I took care of things that had been on hold since September. At the same time, a few days ago I needed to come home and nap after a few hours out. It's better but it isn't perfect. It can be as good as it gets for me though. I still need help with things sometimes, but I can do more.

It's just that there is this scale of where I can be in terms of my health, energy and mood and it really ranges from as great as you could imagine, where I am healthy and out there doing stuff and changing the world and going at warp speed, but the kind where things get done and nothing stops me, and there are the days where I'm in a hospital bed and managing to get a pill down and not puke it back up is both a struggle and a major victory and point of interest in my day. You don't typically go from hospital to super high energy in two seconds flat, but it can easily go the other way.

I think that is one of the things that I've had to learn from being sick. To learn to be flexible. To celebrate things when I want to or can. I missed Halloween this year, and narrowly avoided a full fluid Thanksgiving hospital meal as well. It is hard when it is plans you want, like giving up a job that you were looking forward to, or courses you wanted to take. But in the good moments it teaches me to go with the flow, know to drop things to meet where other people are at, and become incredibly creative at problem solving. Not many people see the world the way I do. It's hard sometimes. You feel like there is this little time bomb sitting inside of you and you don't know when it is going to go off. There are times when you feel like there is no point in making any plans at all, but then you get out of that place and you do. I'm having surgery in March, but I'm already planning for my summer. It's just that tug of war between planning for what you can, and what you want to do and always knowing that things might get messed up in ways that you might never expect. After two hospital admissions, another 4 or 5 ER trips including one the week before, and a brand new diagnosis of diabetes, my sister and I went on a vacation (Because seriously, after a summer like that, who wouldn't need one). First night of our vacation, my sister who had been fine this entire time and hadn't been in the hospital for over a year ends up having a massive flare and a hospital admission. So, you never know.

In between times are hard, but I wouldn't give up the days of feeling good and feeling like all of myself just to know where I stand with my pancreas all the time. I think it's smarter just to take good where I can get it.

Monday, December 10, 2012

The Emergency Room

When you have pancreatitis there are certain things that you can't manage to avoid, like the Emergency Room. I've spent a lot of time there in the past few months and I've come to know it quite well. So, I present the following examination of a typical Emergency Room visit for pancreatitis for your reading enjoyment.

The first step of the ER visit is making the call that you cannot handle the management of the flare at home anymore. This can be indicated by several different factors. For example, one might not be able to keep anything down, including medications, or, one's pain medication may not be effective against how much pain a person is in. By the time someone with a chronic condition makes the call that they cannot handle their condition on their own without medical intervention, they are in bad shape, this is not a "I stubbed my toe and I might have the flu too" kind of ER visit.

Then there is getting to the ER. I have learned that once a flare has gone past a certain point public transit is not an advisable transportation method. People don't seem to enjoy it when their fellow passenger is curled up in a ball in pain or fighting back a severe urge to vomit, not always entirely successfully. Typically, finding someone to drive you to the ER is the best option. Ambulances may be warranted under extreme circumstances, but luckily I have yet to encounter the need for that. Addendum: I have however been in an ambulance, I even knit in it. I was sad that I had to be strapped into the stretcher and like bolted to the floor, it was kind of a cool way to go from hospital to hospital. At least I can say I did it.

I am now going to use my preferred ER as the example of what happens when you get to the hospital. Knowing that each hospital is a little bit different, knowing that this is based off of one in particular might help. For those not in the know about which hospital I go to, you can have fun trying to guess which one it is based on its idiosyncrasies.

When you are walking into the ER there are doors that open automatically for you like magic. This is because there is a security desk right by the door and there are cameras that show them when people are approaching. It is kind of cool because then as a disabled person you don't even have to push the button, the doors just open, kind of like a crowd making way for you. Right as soon as you get inside there is a triage and registration station. It's partially glassed in, except for where you interact with anyone, so it isn't actually very secure or effective. The first question that you get asked when you walk in is by security saying "Are you here to see a doctor?" The security people manage the flow of people to triage. Most of the time I end up staggering in the door looking like absolute crap and using the little will I have left that isn't being spent wishing for better pain medication 2 hours ago if not sooner, to sit in the triage chair.

The triage nurse then asks the awesome question of "Why are you here today?" My answer rarely varies "I have chronic hereditary pancreatitis and it is flaring up" This is then qualified by some of the symptoms that would indicate that such as vomitting or pain, ability to keep food down. Then they ask when it started, take your heart rate and oxygen saturation, also your temperature. They also ask questions like "Who brought you here?"and "Have you been here before" recently the answer to that one is usually yes, and more recently than I like to admit. Triage is usually pretty brief though, it's just meant to assess how close you are to death and how urgently you need to see someone. While being in massive amounts of pain sucks, I am often not deemed to be in immediate danger of death, and score roughly in the middle of the triage scale, serious, but not emergent. The nurse also usually tells me that I'm not allowed to eat or drink anything from that second on, which really sucks because I know my pain meds are going to wear off before I manage to see a doctor and things are going to get even worse for me soon.

After triage you wait for two seconds for the nurse to pass your information to the registration clerk and the registration clerk to call your name. The registration clerk verifies that your chart is right, your address and doctor are right, and then places a bracelet on your arm identifying you as belonging to the hospital. The bracelets in this hospital are kind of cool because they put down who your doctor who is responsible for you is and which area of the ER you are going to, so you can have some idea of how seriously they are taking you, and how long it might be until you see a doctor. Then you go and sit in the waiting room. It is really really hard to sit on an uncomfortable chair when the pain meds are wearing off and everything hurts and there is nowhere to get comfortable. This ER has a giant TV I suppose to distract people for exactly that reason, but it isn't captioned so it isn't accessible. Plus, no one really wants to watch Judge Judy on some talk show anyway. Your wait time here could be 5 minutes or 2 hours. Sometimes they know how long it will be and will tell you, sometimes you are playing the mystery guessing game getting more miserable by the second. The one perk to the waiting room however is the people watching. This hospital often has many cases of alcohol or drug users and they are sometimes entertaining. It is also interesting to overhear phone conversations or in person conversations with people waiting and to hear some of the things that people come to an ER for. One time a girl was complaining that she was told she'd probably wait 6 hours to see a doctor because she broke her toe two days ago. I'm not sure how it became an emergency, but her outrage was quite amusing.

Then you are called back into the ER. If there is anyone with you they will not be allowed to come in at this point. They lead you past many cubicles filled with sick people like yourself, until you are placed into your own cubicle. Then you get told to undress entirely from the waist up and put on an ugly hospital gown. In some cubicles the curtains are complicated to work and it requires some creative positioning to ensure modesty. Naturally as soon as the nurse comes back, they have no issues with the curtains and then you feel really stupid. Inside the cubicle there is a stretcher, typically a chair for a visitor, somewhere to hang an IV pole, and a vitals monitoring system. There is also various life saving equipment like oxygen and things like that poking out from the walls in case you suddenly start to become closer to dying than they originally thought.

Once you have changed the nurse comes in and demands to know why you are here. This particular hospital also has an abuse program so they take advantage of the fact that they have separated you from whoever brought you to ask you if you are being abused and feel safe in your living situation. That being said, I think they would get more disclosures if this wasn't done in a monotone robotic way that implied they were asking because they had to and not because there was any desire to listen should there be something to say. They also ask about allergies, previous health conditions and try to take a history both a general one as well as a history of how you ended up in the ER that day. I bring along a host of paper with a lot of that information printed out because under pressure I don't do a good job remembering the things I'm allergic to, what medications I take at what dosages, or even what all of my diagnoses are anymore. I also find that doctors and nurses really appreciate that. Then, I argue with the nurses about doing my blood and starting an IV because I'm allergic to every adhesive under the sun except for one they don't stock in the ER so I have to carry it with me. Only, the nurses hate it because it doesn't let them see the IV site, but it is kind of that or no IV site so they can't win. I do. Then they struggle to poke holes in my arms and find my veins to steal my blood, and I kind of enjoy that part because it is a good distraction from everything else going on in my body since I'm still without pain meds. Then once they do that they take all of your vital signs again and abandon you.

Sometimes the nurses will go away to confer with the doctor and come back for more tests, more blood drawn etc. before the doctor sees you. Other times it is just an endless waiting game waiting for the doctor. Usually at this point you are allowed to be reunited with whoever brought you to the ER so that you aren't at least forced to endure waiting on an uncomfortable stretcher in pain with a not warm enough blanket wearing a stupid hospital gown and various medical monitoring equipment all by yourself for hours on end.

Then the doctor shows up, and they try to take your history all over again. Then I point out they have it from various discharge summaries and my own medical summary. Then inevitably they ask me how I got pancreatitis. I really worry about doctors when they don't understand what hereditary means. I know it is super rare to get it that way, and to see it next to pancreatitis, but there ought to be some comprehension of what the word means. Inevitably the doctor will suggest that sometimes with pancreatitis you just need to get on top of the pain and nausea so admission isn't guaranteed so they will play it by ear. I am now often asked what pain medication I would like and the dosage. It is then still at least another 20 min- 1 hour before I actually get pain or nausea medication. Then I usually have to argue with the nurse that I really do need the full amount the doctor prescribed because I really am in that much pain, just years of dealing with this disease mean that I hide it well. Then we wait. Sometimes an hour later we do more pain medication. Often they decide to call in GI. Then GI doctors show up and do all the exact same things that the other doctors have done already. They decide that hey! I'm having a pancreatitis flare, and I need pain medication and fluids. They also decide that I should have some x-rays or an ultrasound to see my pancreas and if I have stones or if my stents have pulled a disappearing act or are stuck somewhere they shouldn't be. Then, they decide to admit me, which was the end game from before I walked into the hospital anyway, but we had to play by their rules. Admission though is the part where the ER ends, since hopefully once you are admitted there will be a bed waiting for you on some part of the hospital very shortly thereafter.

And that is more or less, the typical ER visit with pancreatitis. Or for most serious but not deadly things, like pretty much any GI disorder.

Friday, December 7, 2012

The Long Awaited Surgical Decision

So, the appointment with the surgeon has come and gone. It ended up with me signing a bunch of consent forms and agreeing that I will let them cut me open and dissect my pancreas. Apparently I'm letting them take out my gallbladder for good measure too. At this point, for better or for worse there is a decision, and whether it was really the only one that I had doesn't really get to matter right now. Some of the important things are figured out, like, even though I don't have an exact date, it will be at the end of March. That's for a few reasons, the first being so that I can take courses this semester. The second being more silly but I don't want to be in a hospital on my birthday. I have a conference to help run that weekend.

The procedure that they are doing is called a modified Puestow procedure. It's a bit funny because I've explained it to people so many times over the last few years since they first started proposing it, but there were aspects to it that I didn't understand until I went over it in much greater detail with the surgeon this week.

So, the reasoning behind why a Puestow procedure would be helpful for me means a bit of an anatomy lesson. A lot of textbooks say that your pancreas looks like a spongy finger, which is mostly true. Your pancreas also has this main duct inside of it that runs all the way through it that collects the digestive enzymes it makes and I think insulin as well and funnels that into the rest of your body through the common bile duct. That is how everyone else's pancreas works. If you are me, or my siblings, first of all your duct is shaped wickedly different from other people, that is something that seems to happen over time with pancreatitis. It means that my ducts can collapse on themselves. When that happens, all of the enzymes and digestive stuff in my pancreas gets super concentrated. One of the minerals that is in the digestive stuff in anyone's pancreas is calcium. Calcium is a lot like sugar. When there is a normal amount of it, it is in liquid form. When it gets concentrated (like when the duct collapses) it turns into a solid state, and bang, pancreatic stones form. Stones are one of the things in pancreatitis that can cause a lot of the pain.

So, the Puestow procedure attempts to fix the problem that allows the stones to form in the first place, and the tiny ducts a lot of people with pancreatitis have that keep any stones that form from being able to get out of the pancreas. They go in, and dissect the pancreas open reaching that duct inside of the pancreas. From there, they cut a piece of small intestine making one incision. They then dissect part of that piece of intenstine too so that it is opened up. Then they sew the opened up piece of intestine around the edges of the opened up pancreas, making a huge duct. Then to keep everything nicely running together the site of the cut up intenstine is joined back into everything. The goal is a bigger duct that can't collapse on itself the same way, and also this huge duct into your intestines as opposed to a small one and the common bile duct. In my case they are also going to probably take out part of the head of my pancreas too because that is where my ducts have some of their worst constrictures.

The biggest thing with this procedure is that it takes a huge gamble on stones being the cause of the pain in pancreatitis in any given person. For me, I would tend to agree that pancreatic stones over the last few years have become a major contributing factor for what is going on. For those who stones are a minor involvement in their pain (There are lots of reasons why someone with chronic pancreatitis might experience pain) this procedure isn't going to help a whole lot.

It's also a major major surgery. 8-10 days in the hospital. Possibly overnight in recovery. Days in a step-down unit, finally a typical hospital room after. A billion tubes hanging off of you which makes me really squicky. Catheters, NG tubes, an epidural for the first few days too, so a catheter in your spine too for bonus fun. Probably some form of PCA (Pain pump too), and eventually just plain old pain meds as time goes on. I've had surgery before, but this is on a whole different level.

So, it's been weird, because of course I'm scared and of course I'm wondering if I'm doing the right thing. At the same time, nothing less invasive is helping anymore. I had a good conversation with my GI doctor this week about how we've hit the wall with pretty much anything else there is to try. I don't like how it feels to have no idea how I'm going to be feeling on any given day and knowing that it's probably only a matter of time before I end up back in the hospital. I feel like I'm making the right decision, and I'm relieved to  that a lot of it is more on my terms, it's just going to take a lot of time to get used to this idea. As I think about it more, I'm sure I'll have lots more to say about it.

Monday, December 3, 2012

The Waiting Game

Pancreatitis can be a tricky thing. For some people the pain is constant, leaving them unable to work or go to school. I've heard of people spending months in the hospital, or basically feeling like they are constantly going back and forth between home and the hospital. For other people though, it can come and go. I'm fortunate enough that it can be years in between pancreatitis flares serious enough that they require more than me taking care of them at home. We had a system where I'd go and get my pancreas checked out by ERCP (Endoscopic Retrograde Cholangiopancreatography - Kind of like a colonoscopy but going down your throat so no horrific prep) about every 3-4 months. My doctor would clear out any new stones that happened during that time, put in a new stent to help keep my pancreas open, and I'd wake up from the procedure with a happy pancreas for about 3 months. Once we figured out that I was allergic to the contrast in the procedure we were all even happier.

Alas however, all good things must come to an end, and this summer marked the end of me being able to get away with minimally invasive pancreatitis management. I ended up in the hospital twice for my pancreas (Once involving a psych evaluation, but I'll save that story for another time), and the words "I think we have reached the end of what we can achieve endoscopically" were uttered and conversations about surgery were had. We determined that there would be a referal to the surgeon, and that in the meantime we'd continue on as we had, with ERCPs every few months.

Then, there was the disastrous surgeon appointment. After waiting 2 or 3 months to get in to see the surgeon, within 5 minutes the resident informs me that the chances of this procedure (A Puestow) being successful for people like me are about 50%. On top of that only 50% of people who initially experience any relief experience relief beyond 6 months. On top of that the healing time for most people is 8-10 weeks, and there is plenty of reason to suspect that for me it would be longer. So, not exactly strong selling points. I left with a strong sense of not having any clue why any of my doctors would think that it was a good idea to put me through this. I had countered with just pulling the whole damn thing out of my body instead (While you need insulin and enzymes to survive, they can be provided synthetically) but I was firmly told that that wasn't an option for me because I am already diabetic (If you have pancreatitis for too long it can damage the nerves surrounding the pancreas so it won't stop the pain and makes the instant diabetes ridiculously hard to control). If you aren't diabetic there is a procedure that they will sometimes do instead called a Total Pancreactomy with Auto-Islet cell transplant. I however, don't qualify. Leaving the surgeon's office feeling very strongly like he could keep his surgery he invited me to go have an MRI, and we'd come back and talk some more. We could take our time.

As always, irony was not on my side. By the end of the week I was back in the always familiar hospital bed. Over the next two months I spent altogether about 30 days in the hospital. Some perks were that the MRI was done inpatient (Try trying to find a nurse to help you get out a snug piercing during morning shift change), I had more ERCPs than I could ever want, and pain meds were adjusted to something resembling an effective dose. Cons were ending up back in the hospital with a white cell count of 26 for viral pharyngitis (A sore throat), bad pain management, being in the hospital and feeling like crap.

The best news was though, that one day my doctor sat on my bed at like 7 am before a therapeutic endoscopy conference and explained to me why I should have surgery. I explained that it seemed like a lot of risk and a lot to go to for a 50% chance at it helping anything. He explained that how someone responds to ERCP is a really good indication of how you will respond to the surgery, and since I do really well after the ERCP, and I just need them really often and lately it hasn't been the most successful on its own, that makes me a really good candidate.

So, now I've been waiting to see the surgeon again. I see him again tomorrow morning with a slightly different decision than telling him where he can put his scapel. It wasn't the easiest decision, but I think it is the right one for me right now. I want to go to school, I want to be able to work. I know I will still be sick and this won't cure everything, but it is a shot at being sick less, or having it be less severe. Right now I don't know if I can go back to school in January. I already lost one semester to being in the hospital. So much depends on staying out of the hospital and when I might have the surgery. I've spent a lot of  time being worried about when this is going to happen, and how long things are going to be on pause for. Now tonight I feel like I'm just ready to know. I feel like I now what time of year would be good for m to have surgery, and we'll see what happens tomorrow. No matter how it goes at least the waiting game is over.

Sunday, December 2, 2012

Diagnosis Most Responsible for Admission

So, once you've been in the hospital a whole bunch of times you notice that every time there this this process where they try to figure out what is wrong with you. When you are stable enough to go home, they give you a letter that describes exactly what they did and exactly what they figured out. At this point I have a collection of them. They all bear upon them the exact same phrase: Diagnosis most responsible for admission.

In my specific case 99% of them read - "Diagnosis most responsible for admission: Chronic Hereditary Pancreatitis"

Not too many people know what Chronic Hereditary Pancreatitis is. In fact, half the time when an unfamiliar doctor sees it on my chart they go "How did you get pancreatitis?" glossing over the fact that the hereditary part would imply that much like any other genetic illness, I got a perfect copy of some imperfect RNA which just so happened to be autosomal dominant so that it could interfere with my life to the maximum potential possible. So, before you ask the next question that is sure to come, I got the pancreatitis from my Dad who didn't know that it was genetic, and just thought it was some pretty crappy luck. No one knew it could be passed on when he was at his sickest, so it never crossed anyone's mind. My sister and brother also have it too. Awesomely enough there is no cure, and very little they can do in terms of treatment.

Pancreatitis, regardless of whether it is the fancy rare genetic kind (The last estimate I saw was 1000 people in the US so about 100 people in Canada - My family is 1/25th of that), or the you just have really crappy luck king, are pretty much the same. Your pancreas gets inflamed and swollen and painful. You can get stones in your pancreas that can block the ducts which are painful and can also be super dangerous depending on where they are. A lot of people get pancreatitis from gallstones, but under the right conditions your pancreas can make stones too. When this happens you are typically in a lot of pain. Sometimes if you have chronic pancreatitis and are used to it you can manage at home with what is known as "supportive care": Lots of clear fluids to prevent dehydration, and pain medication. A lot of the time though you can need medical intervention, such as IV fluids, pain management, and sometimes medical options too, like scopes to get rid of the stones, or X-ray or ultrasound to make sure everything is okay. Typically if you can't keep down medications or fluids, or can't get the pain under control it is ER time.

The other basic information to know about pancreatitis is what your pancreas actually does. Your pancreas is a gland basically, that secretes insulin and digestive enzymes. It helps regulate your blood sugar and digest your food. People with pancreatitis can have a lot of trouble digesting certain foods (particularly ones that are higher in fat or fibre) and if they have chronic pancreatitis stand a greater chance of becoming both malnourished and diabetic over time.

The goal of the blog is that there aren't too many places where people talk about pancreatitis, and there aren't too many people to talk about it with. Plus a lot is happening with my pancreatitis right now, and having somewhere to talk about what is going on with me with people, particularly those who get it might be helpful. I haven't found too many spots that are okay to talk about being young and dealing with this and conversations about being a student and being sick, so I thought I'd start the conversation that I want to have myself :-)