Pancreatitis

[mbrogier]

For the past week and a half I haven't felt that great. It started out as a bit of an ache under my rib cage where my stomach is. Sometimes I get cramps there when my blood sugar gets low, and I get dehydrated. I upped my fluid intake with sweet tea, lemonaide and diluted cool-aid. That didn't help. I've also been extremely tired.

Monday a week ago, I was hurting pretty badly and was very nauseated. I had also lost a lot of my appetite. I took some nausea medication and thought perhaps I felt bad because I hadn't eaten. I decided to just eat some peanut butter for protein. Within 30 minutes the pain was horrible. Rob took me to the ER because it sounded like I had pancreatitis again. I haven't had any problems since I came home from Mayo last August. The ER doctor had seen me before for my gastric issues. He thought I had pancreatitis as well. He treated my pain and ordered blood tests. My numbers were normal. He gave me pain medicine and sent me home. I got in to see my PCP later that week who was also perplexed. He said I should see my gastro. The PCP also redid my bloodwork to check my numbers. While they were still in normal range, they were climbing. My amilase was something like 53 in February and was 262 last Thursday. He wanted to hospitalize me over the weekend, but he was going out of town. I didn't want to be stuck in the hospital without my doctor, not being allowed to eat and battling the nurses because my blood sugar gets so low when I can't eat or drink--so I'd be on IV glucose and peeing every 5 minutes on top of everything. :rolleyes: I'd also hit my hospital deductible so it would cost me a lot more money. I talked him into just giving me pain medicine and sending me home. I got in to see my gastro today.

He poked and prodded. He's not sure if the sphincterotomy that Mayo did has shrunk back down or scarred over. (explaination-The sphincter is the opening at the bottom of the large bile duct that goes from the gallbladder/pancreas/duodendum area of the stomach to the small intestine--it should open to allow extra bile the body doesn't need to flow into the small intestine to be disposed of. For some reason, my sphincter wasn't working properly and bile was backing back up causing irritation can cause pancreatitis. All that bile just sitting there can also form bile stones, which hurt. At Mayo they made the sphincter larger, but it can scar back down. Also, some people get bile sludge that just builds up in there and just doesn't drain because it's thick.) He ordered an ERCP (diagnostic scope that uses an xray machine) to be done next Monday--the first available opening. :(

I feel awful. I'm nauseated, and I'm in pain. (most of the time not enough to want to be in the hospital--I have to be in fall over, rip someone's eyes out pain to go to the ER) I get hungry, but eating makes me hurt more. My gastro was a bit surprised that my numbers hadn't risen because historically they have. He ordered more blood work this morning. His office called this afternoon to let me know that my numbers did go up. I'm not sure if this technically means I have pancreatitis now. The doctor didn't tell me to do anything any differently since I'm already scheduled for the procedure. We already know why I get the pancreatitis type symptoms; it's not like we don't know what is going on. I'm happier at home as long as I'm not hurting too bad. The gastro did give me a stronger dose of pain med than my PCP gave me because the pain isn't getting better but worse. I am having breakthrough pain. Rob's worried about how bad I feel. I would like to stay at home if I could. I even checked out plenty of books at the library yesterday. I'm just wondering if I'm going to stay out of the hospital until next Monday.

This all could be a moot point if when my PCP sees my blood work tomorrow when he gets back into town he hospitalizes me anyway to go ahead and get everything under control. He doesn't like to string me along in a lot of pain if he can help it because it messes with my sad little immune system so much.

If I'm not around in the next couple of days, y'all will know that I was drug kicking and screaming to the hospital.

[Beth]

I'm so sorry you are having to deal with more of this and are in such pain. I hope you can keep your mind on some good books, realax and get through the time at home until the procedure. I really hope you can get some relief for good. Hospitals are a terrible place for to be when you're sick -- even though they may be exactly where you need to be (more a no rest for the weary kind of thing -- I know you understand what I'm saying).

I've got a big puppy snoozing on my sofa I wish I could loan you for a snuggle. She's a big lubber. I know she'd want you to feel better too. Hang in there!

[mbrogier]

Thanks, Beth. My kitties have been snuggling with me and took a nap with me this afternoon. ( I just wish Macavity would quit sneaking up and jumping up behind me on the club chair--scares the snot out of me. :rolleyes: :D )

I understood what you meant about the hospital. They can make you comfortable, but you don't get much rest. There's also the stress it puts on Rob, my parents, and my in-laws. (MIL is in the hospital recovering from her second knee replacement.)

I sure hope this week is a better week for your family. You guys have been through the ringer, too. (((Beth)))

[jmarie]

I said a prayer for you. Hope that you feel better soon.
Joyce

[Cookin4Love]

Poor thing, You and Rob have had quite enough, I believe. I hope you're able to stay home until Monday. I know exactly what you mean about hospitals; it's just harder to rest there. Good thoughts and prayers for you.

[MISSINDI]

Oh Micah, you definitely haven't had an easy time of it ... hope everything sorts itself out soon for you. :)

[Beth]

I understood what you meant about the hospital. They can make you comfortable, but you don't get much rest.

Yes, that's pretty much it. I had a 10 day stay after my first son's birth. I just remember wanting to be able to sleep without a machine attached to me and people coming in to do this or that. I had to be there for the IV meds, but it was no place to get the rest I needed.

[Babs73]

I am actually recovering right now from my first (and hopefully last) bout of pancreatitis. Unlike you though, mine is idiopathic meaning the doctors don't know the cause. It's tough too because my lipase/amylase are still elevated, although my pain has subsided. Apparently that is unusual (great!) and is pretty worrisome to me and my DH. Anyway, I'll be sending positive thoughts you way and hoping you don't have to stay in the hospital. Sounds like you have been through more than your share. Try to keep your chin up, and please keep us updated!

[LakeMartinGal]

You are in my prayers, as well! My heart goes out to you... you have really had enough to deal with! You sound like you have a good attitude, though... I admire that!

(((((mbrogier))))) :)

[Diane B.]

Another hand up for having had pancreatitis (5 days in the hospital about 5 yrs. ago), but mine was caused by (extremely) high triglycerides which isn't the most common reason for getting it. I well remember the days before I went to the emergency room though... not fun! (of course, this happened on a weekend and I thought I just had some kind of intestinal thing too, but Monday morning I appeared on my doc's doorstep in pajamas, totally bent over and looking horrible).

My treatment was simply 5 days of "flushing" with plain old water (in one arm, and out the other end, continuously). I didn't eat for the first few days, then jello and broth etc., but I couldn't handle the food anyway. Strangely enough, I was most worried about not being able to taking the meds which had been holding my fibromyalgia to a tolerable level as well as not being able to eat (I get icky and shaky), but after the five days of flushing, I actually was able to go off of my meds for fibro and it's never come back at the level it was (the docs couldn't understood why, but then they don't know much about fibro really anyway, and relief is relief no matter where it comes from :D ).

So I don't know if flushing would help you, but maybe you could just try drinking more plain water in case it makes you more comfortable while you wait??


Diane B.

[dreamer]

((((Micah))))))
I know you're an expert on coping, at this point. I hope this bump in the road is behind you before you know it- but till then, may you find comfort any way you can get it! Take care,
dreamer

[colleency]

(((Micah))) Sending you get well thoughts.

[KristiB]

{HUGS}

I hope you get better soon!

[mbrogier]

Thanks, everyone.

Diane, I've been drinking glasses of brewed tea with sugar (all homemade) at my doctor's request. My blood sugar hovers around 80-90 after a meal and will go down in the 30s if I don't eat. I don't drink syrupy sweet tea-just slightly sweet. Right now, I have a white/green tea mix from Stash. I do also drink water.

That is really weird how flushing out your pancreas helped your fibro. My fibro has been really bad this spring--to the point that my doctor ran the blood tests for RA. He was debating sending me to a Rheumatologist when I showed up in his office bent double from the pancreatic stuff again. When I had the gallbladder stuff last year, anytime all that sludge built up inside I would get really lethargic and lose my appetite. We were actually pretty excited to think that my symptoms were from the bile stuff and not the fibro. The ERCP can flush me out and make me feel great if that's the cause.

[Beth]

Micah, I don't know that I remember knowing you had fibromyalgia too. SInce you do, I will post what I PMd to Diane.

I had a fibromyalgia diagnosis a few years back. At the time, my next problems were continuing to get wqorse and I was not getting any treatment that was helping anything. It was all on the cheap and all aimed at saying nothing was wrong with me since I had a Worker's Compensation claim. It was only after they denied me any further medical treatment that I eventually got treatment through my regular doctor and the doctors he referred me to. Once I was able to improve the underlying neck problems, the fibromyalgia symptoms lessened. The neck problems are with me for the duration, but when I am able to keep them in check, I don't have fibro problems. When something causes them to get out of the normal range and stay there a while, the fibro symptoms return.

I have known of a number of people with fibromyalgia diagnoses who have had chronic underlying problems (an undiagnosed broken hip, a broken foot that wasn't treated, a chronic illness, etc.). Some of them have been able to resolve the underlying problems and some not. It has seemed that those who can determine the underlying problems and get back to reasonably good health have been able to get rid of or greatly minimize fibromyalgia symptoms.

My personal theory is that fibromyalgia is a systemic response to the chronic stress of an underlying problem that isn't getting the right attention. For me it stemmed from deep pain and lack of sleep (they have created fibro symptoms in men who were sleep deprived -- nothing else, and they disappeared when they got sleep).

I believe the reason they can't find a test for it is that it isn't the problem -- it's the response and the problem is different from person to person. I'm not a doctor, just a mom who used to be a lawyer and can't work anymore -- and who came close to going into medicine or medical research. I wish I could put this to the test and give people with problems and pain hope and reassurance to those who have been told fibromyalgia is all in their imagination or women's boredom or depression. I'd really love to have the answers proven and be able to shove them down the throat of the WC quack who yelled in my face. For now, I just hope that you can finally get your body healed, and I would love to find that the fibro resolves for you too.

[mbrogier]

Thanks for telling me that, Beth. I was an extremely active teen. I had a horse and had some bad falls. I broke my tailbone and jammed up my lower back and spine. When the pain didn't get better, my mom took me to see my pedi. He laughed at me and asked if he was supposed to put my butt in a cast or sling. :mad: (he was my dad's business partner's ex) He did the same thing when I messed up my shoulder in a jet ski accident. The jet ski lift cable broke when I was pushing the jet ski over the water--when it snapped I had so much forward momentum I fell with the jet ski. The weight of the lift fell onto my shoulder. I had on my lifejacket which probably kept me from breaking my shoulder. I did a lot of tendon damage and had to do a few years of physical therapy once I saw a sports orthopedics specialist. I also had to give up the violin because it hurt to much to play. My shoulder still locks up if I move it wrong. All because the doctor didn't treat it when it was first injured.

I think I have one injury in particular that might be causing some of this. My horse always tried to catch himself when he tripped. (my riding instruct said that this horse went out of his way to protect me from injury--once when I fell off my helmet flew off, and that horse was trying his best to hover when he moved away so he didn't step on me. He was a very special animal.) This one time he flung his head up for balance. The tripping action caused me to move forward, so his head hit the side of my face. It was so hard my retainer actually flew out of my mouth. There were vertebrae in my neck that were crooked. My jaw would not shut for about 20 minutes. I did do physical therapy for a few years which really helped. Then I had mandatory PE, and some overachieving girl tackled me in "flag" football and undid all that work. :mad: My neck crackles and pops. The vertebrae aren't as bad as they were, but they're not normal. I also took up downhill skiing in college which meant more chances to tie my spine into knots. I tried another chiropractor in college, but he was a hard sell on treatment packages and used a drop table which I hate.

When I got married, I discovered I had Interstitial Cystitis (www.ic-network.com). I went from being extremely active to being a sloth. I think all those injuries and stress from school, being sick with all the heart related issues that year, wedding plans (MIL was a pain before the wedding, and my mom drove me nuts), and moving just did me in. The Fibro just goes hand and hand with the IC. --one of the theories of IC is that these renegade mast cells eat away the bladder lining and that IC is an autoimmune response which can be traced back to a really stressful period. Then I had the stroke and moved again which got me out of another stressful situation with Rob's family. (I've told you about evil SIL--she sat in my living room and told me that I should just get up and do stuff like I used to do when I was a teen. She didn't get that I didn't WANT to just sit around. She and BIL made me feel like crap because I couldn't help out at church like they thought I should. They would tell Rob that they thought I was faking being sick. SIL's mom was disabled, yet she acted this way. Man, did they feel like sh!t when I had my stroke.) I felt so much better after we moved to Chicago. The fibro diagnosis came when I tried to go back to school and was getting stressed again. :rolleyes:

My best friend also has IC. Her mom has Behcet's disease. Her's triggered after she was married and working obscene hours at an investment firm as a senior manager. She has her 7 license. We talk a few times a week and have decided that we should write a book about how to cope with chronic illness. It would be a book for patients and their loved ones and friends. It would also help them navigate the huge, often unfriendly world of healthcare. If you don't know the ropes, it can take years to get the right diagnosis and treatment. It took me 3 years just to get the right doctor for my IC.

Again, I'm really glad you responded like you did, Beth. I will get treatment for my neck again and see how that helps. Hopefully my openness and honesty might help someone else. It is so frustrating to be told over and over that there is "nothing" wrong with you and "it's all your head".

ps--Rob has been dealing with the nerve pain from the hernia surgery he had last fall. The doctors though that a nerve got cut or pinched when the hemorghaging was fixed. The pain doctor did not do an MRI like our PCP thought he would; he just looked over the cat scans that were done. He assumed that since the nerves were responding so well that was all there was to it. When Rob saw the PCP last week, our doctor was amazed at the amount of pain medication it was taking to treat Rob's pain. He insisted on an MRI and EMG to test for other causes of the pain. Rob has degenerative disk disease. No wonder he was in so much pain! Now Rob is getting physical therapy to fix the slipped discs. His mom and dad both have this. Can you imagine if we didn't have such a great PCP? Who knows how long Rob would have suffered. He already felt like he was being a weenie and overreacting about the pain because the nerve pain the doctors knew about didn't seem to be enough to explain the amount of pain he was in. I did tell him that he was lucky. Had he been a woman, he wouldn't have gotten nearly the amount of pain medicine or other treatments for his pain.

[Beth]

Amazing. I envy that you rode horses though. It was something I always wanted to do when I was young, but it was something people with more money did. I have been on horseback a few times, but not really riding on a regular basis. I would have loved to learn to jump too. With my neck as screwed up as it is, I can't do it, and I can't risk a fall. But they are beautiful animals, and I loved hearing about the one who protected you.

I am so glad you have a good PCP, and I hope and pray you and Rob will reap all the benefits better care can give you and enjoy better times soon!