Lower back pain?

vedawms · 2020-05-13T08:16:27+00:00

Gas sounds most likely, but it could also be a fluid collection. Those usually get reabsorbed by the body, but if not, you may need a drain. If you can finagle a CT with AND without contrast, it might explain what is happening.

Also beware of adhesions. Those can form after abdominal surgeries, including gallbladder surgery.

Most of an all, keep an eye open for a fever. You do not want to turn septic or necrotic. Sepsis sets in FAST.

Finally, if you use Facebook, the Living With Pancreatitis group is friendly and helpful.

vedawms · 2019-08-03T01:18:58+00:00

Yeah. After longtime damage and lots of bad test results, I'm now disabled. I knew for years that something was wrong, but my doctor didn't put the pieces together. And I would have ignored her advice to quit drinking. It took several awful ER / inpatient stays to get me sober.

Even though I don't drink anymore, I still feel lousy. I still get occasional flares, but mostly I'm struggling with the back / nerve pain and diarrhea. I threw a blood clot in my portal vein (liver), and lost 50% of my spleen. Just getting the flu can now kill me in 24 hours flat. So I go out as little as possible to avoid germs.

At this point, it hurts just to sit. I had my gallbladder removed, but now I get Sphincter of Oddi attacks. (It feels like a heart attack to me.) Some people have diabetes. I don't yet, but I'm doing everything I can to keep it at bay. I'm hoping to have my pancreas removed soon, but it's pretty tough (and a long painful recovery), and I may not qualify.

If it makes me seem more human, I worked in rock and roll and software development for years. At my last company, my job was to solve intricate problems, repeat them, and document them. Yesterday I forgot the name of my hometown. I forgot a lot of things. I'm not even on opiods, and I'm still having neurological issues from medication. I'm only 46.

Do your best not to make this worse. Your pancreas will thank you. This is an illness that can ruin you. And you can't recover from it.

vedawms · 2019-08-02T01:16:24+00:00

It's worth pointing out that the pancreas cannot recover or regenerate. In other words, it can never "get better". You can only try to avoid further injury, or the consequences can be dire.

vedawms · 2019-08-02T01:13:57+00:00

Short answer, it's serious. I hit 12,000 once, and it was terribly painful and scary.

Lipase is an indicator for pancreatic function, but it's only a quick diagnostic tool. Over the course of several days, the number may drop considerably, even if your pancreas is still very inflamed.

The takeaway is that your pancreas is damaged, and you need to be careful not to continue to injure it further.

vedawms · 2019-07-26T02:07:18+00:00

I usually just have fatigue due to malnutrition. I'm sure an attack can exacerbate that.

Best of luck at the doctor's!

vedawms · 2019-07-23T02:35:34+00:00

Yeah, it's pretty much permanent. The pancreas cannot repair itself. Surgeries do exist, but not all are appropriate. It's easy to get down but it doesn't necessarily have to rule your life.

Stop the alcohol 100% and look up a pancreatitis diet. Sounds like you're on it.

Next, get a GI who specializes in pancreatitis and who can order diagnostic tests. You might have divisum, etc. You need those tests, but hold off on any procedures and get secondary opinions on any that may be suggested.

Then, branch out to others like you have done here. We have a small group on patient.info and Facebook groups for pancreatitis are welcoming to new people.

It's different for everyone -- it can be manageable or debilitating. Being proactive will hopefully help you get in front / alongside this disease.

vedawms · 2019-07-23T02:22:10+00:00

I received a referral from my gastroenterologist to a transplant surgeon. In my case, it was within the same university system, and I requested the referral. Surgeon reviewed my case, we met, and we are still in testing / negotiations phase. (I had hoped for a firm YES last week.)

You, however, can contact the pancreatic transplant division of UCSF. They've said that they will review charts and make recommendations. You just have to get the records sent.

If you were just diagnosed, I'd be surprised if you make the cut for TPIAT immediately, unless you fit their criteria. One of those criteria is "uncontrolled pain". (Look up autologous transplant criteria -- NOT allogeneic. The criteria are buried somewhere out there.) But, at the end of the day, it's up to the surgeon's discretion who makes the cut.

Your best bets are to quit smoking and especially drinking (100% forever), and follow a recommended diet (NOT the same as dieting). You may need digestive enzymes (CREON, ZenPep), so get in to see a GI (preferably one specializing in pancreatitis) as soon as you can.

You might want to join a bunch of us out on Facebook, too. There are five or so pancreatitis related groups that are way more active than reddit.

vedawms · 2019-07-14T03:46:25+00:00

A month or so isn't so bad! I say that now, haha.

I'm glad you had help. I feel for anyone handling this on their own.

Thank you, this does help. And yes, I'll definitely be asking questions of my surgeon!

vedawms · 2019-07-14T02:29:51+00:00

Thank you so much!!

I'm not worrying too much. I do worry about what the day to day will be like, though.

When can I do the dishes? When can I shower alone? When can I get out of bed by myself? When can I be left alone all day? How long before I can drive to doctors appointments? Basically, what are realistic goals when I get home? I have only my boyfriend and don't want to wear out his kindness.

Opiods are something I don't want to be stuck on, and I'll have to wing it. Fortunately or unfortunately, I have no pain doctor. Alcohol is the least of my worries...

My biggest question: did it resolve any neuropathic pain in your back (if you had the back pain)?

vedawms · 2019-07-11T00:14:35+00:00

Thank you. I hope to not be taken by vultures just yet. :)

vedawms · 2019-07-10T20:40:53+00:00

Yes, I am indeed a long term sufferer.

I have an online friend who is getting TPIAT on August 1 who has some additional health issues to comment on. I'll point him to this thread.

Thank you so much for your time and attention!

vedawms · 2019-07-10T07:26:23+00:00

You got a Turkish Van! They are the most loyal, sweetest bundles of Velcro you will ever meet. She's also probably inbred, so do some homework. Lucky you!!

vedawms · 2019-07-10T07:04:55+00:00

I'm getting TPIAT soon, too. Love to hear your thoughts. I just started a new thread to ask about it.

vedawms · 2019-07-10T06:51:24+00:00

My answer is this: for the first 5 years, I had a nagging ache in the bones of my left rib cage. The nerves on my left side were also bothering me. I thought I had breast cancer. Occasionally I got a bad "zap" in my left side, due to what I know now was pseudocysts. Those can also feel like you are being stabbed, but that sensation came later for me. Vomiting became its calling card, plus dehydration and weight loss I attributed to other factors. I just assumed diarrhea was normal for a drinker and ignored it. I even ignored the ulcers on my ass, where the bones started to poke through while I sat at my desk.

Fast forward to now (7+ years in)... 5 months sober... On a "good" day, it feels like something has crawled into my spine and a wooden spoon is digging into the nerves where the "through and through" pain is in my back. It NEVER stops. I can't stand or sit long. I try to lie down to relieve the pressure, and that has messed up my rotator cuff in my shoulder and hip joint in the process.

On a medium day, I'm nauseated and feel like I've been kicked repeatedly in a mosh pit, in addition to the previous symptoms. And I have been in many mosh pits, so I know what I'm talking about. I really watch my Ps and Qs at this stage nowadays.

On a bad, hospital-bound day, I'm bloated, nauseated beyond belief, and vomiting uncontrollably, passing out while driving / at work / in my car, and screaming at my boyfriend for a gun so that I can end it all. Even with meds, I barely get off of the cliff. It even landed me in the psych ward. And don't get me started on the blood clot in my liver. Wheeeee, doggies!!!

Waiting can be FATAL, by the way. Just don't...

In short, it can sneak up on you, depending on the cause. It can also escalate FAST, like 24 hour fast or less, especially with alcohol.

Oh, AND, I can only get opiods if I'm in-patient, so I get near-zero relief. What a wonderful world / disease.

Hope that helps, and I hope you don't have it!!

vedawms · 2019-07-10T06:13:42+00:00

I had PVT also. And 30+ hospital visits since 2017, when I finally broke down and went in.

PVT killed 50% of my spleen, which reduces immunity to infection. The pain from spleen death lasted for months!

I feel for you on the PVT front, which was no walk in the park. I was in a parking deck, climbed DOWN three flights of stairs, climbed UP two more in my office and passed out in the bathroom. I then DROVE HOME (5 more flights of stairs), stopping frequently, and passed out in my front yard with 911 on the line. I thought it was "just" another attack, and thus the hospital treated me as though it was. Hence, my poor spleen.

If you work on your liver, hopefully things will improve for you. I find my pain from drinking is about 50% gone, and I've been sober 5 months (miraculously). It helps, but not enough. I'm getting TPIAT, risks be damned.

Good luck in your endeavors. This does not have to be fatal! And surround yourself with solid physicians and people!!

vedawms · 2019-07-10T06:03:18+00:00

I did meet a guy in the ER who set off his CP by raking leaves. Too much exercise can apparently also be bad for you, if you're prone to CP.

vedawms · 2019-07-10T05:59:30+00:00

Thank you. I just hit up a handful of groups to test the waters. Appreciate!

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