Lab Results

I just wanted to keep everyone posted.
We got Phil's labs back in the mail, they have possible explanations but nothing definitive.
I will post something when we know for sure what is going on.
We meet with Phil's new GI in February so we should know more by then.

Phil is still in pain, but seems to be trying to battle this and get up. Its a day by day kind of thing.
Hopefully we will get more answers in February.
Hopefully a different treatment plan because whatever they are doing now, isn't consistent enough to work effectively.

I'll keep everyone posted on whats going on.
Until then, if you are in the area, we'd love to see you!
Just call or text before you come over to make sure we aren't out at an appointment or something.
If you are out of the area, you can keep following this blog or following me on facebook.

Moving forward

We got a call yesterday for Phil's second opinion.
(I use the term "we" a lot because I feel like I'm going through this as well, I'm the messenger, the call taker, the schedule, the secretary, the note organizer).
Today I called to schedule an appointment.
With a second opinion, you only get one appointment, which you may or may not have to pay out of pocket for.
So Phil had a big decision to make. Get a new GI, stick with the old GI, or go in for one appointment with just a second opinion which may or may not bring the answers that are needed without further testing (remember, only one appointment for a second opinion).
Phil opted to get a new GI. Apparently these GI doctors are hard to come by. His current GI books several months out with his appointment, his referral was for a doctor who we couldn't get an appointment with until April. So I asked for first available, after the old GI signs off on his paper work.

So far, we haven't had to go to ER this week. WAHOO
Phil has really bad abdominal pain. The pain meds aren't even working right now. He spends most of the days in and out of sleep so he doesn't have to deal with the pain. Sometimes he moans in his sleep from the pain.
He describes it similar to passing a kidney stone.
His pee smells like ammonia (sure you wanted to know that, right?), his head hurts and throbs.
50% of the days this week he has been white as a sheet. One day he was sick to his stomach. He feels nauseous everyday.
His nose has been doing something crazy. It just starts leaking water. He can go to pick Ava up and there will be an entire puddle of "water" (clear liquid) from his nose dripping. The other day he looked up his nose. The nasal polyps are back.

He got blood work done Tuesday. I hope we get a call soon about the results.
I also hope we get a call soon to schedule with the new GI.

Another week

This past week was bad again.
While we had an appointment with Phil's pain management and also his new family doctor.
Phil still has to wait to see another specialist to get more questions answered.
His pain was almost unbearable. Everyday we were teetering if we should go to ER or not.
Phil ended up not going to ER.
Just waiting to get in for a second opinion or see his regular GI.

Tomorrow Phil goes in to get blood work done.
Supposed to get allergy testing done this week.

I found a lump on Phil's back. But maybe its just from laying down all week. He didn't leave the house for about 4 or 5 days straight.

Phil's medical notes

Here are today's medical notes.
We went to the family doctor today to get a referral to get a second opinion for another GI doctor. Just to get a second pair of eyes to see if anyone missed anything.

We saw a new family doctor because Phil's regular doctor is out for 4 months cover at the wound care center. We really like the new PA. She took her time. Read the notes, read back the notes, wrote more notes, offered some different ideas that we didn't even think about.

While we wanted to get a referral to a neurologist, all the signs and symptoms still point to Chronic Pancreatitis.
What is Chronic Pancreatitis (even though Phil has had this diagnosis for over a year, I'm still not completely sure what this entails)?
Chronic Pancreatitis is (taken from www.ncbi.nlm.nih.gov)
Inflammation of the pancreas that does not heal or improve, gets worse over time, and leads to permanent damage.
Symptoms include:

Abdominal pain

Greatest in the upper abdomen

May last from hours to days

Eventually may be continuous

May get worse from eating or drinking

May get worse from drinking alcohol

May also be felt in the back

Digestive problems

Chronic weight loss, even when eating habits and amounts are normal

Diarrhea, nausea, and vomiting

Fatty or oily stools

Pale or clay-colored stools

Treatment:

People with severe pain or who are losing weight may need to stay in the hospital for:

Pain medicines

Fluids given through a vein (IV)

Stopping food or fluid by mouth to limit the activity of the pancreas, and then slowly starting an oral diet

Inserting a tube through the nose or mouth to remove the contents of the stomach (nasogastric suctioning) may sometimes be done. The tube may stay in for 1 - 2 days, or sometimes for 1 - 2 weeks.

Eating the right diet is important for people with chronic pancreatitis. A nutritionist can help you create the best diet to maintain a healthy weight and receive the correct vitamins and minerals. All patients should be:

Drinking plenty of liquids

Eating a low-fat diet

Eating small, frequent meals (this helps reduce digestive symptoms)

Getting enough vitamins and calcium in the diet, or as extra supplements

Limiting caffeine

The doctor may prescribe pancreatic enzymes, which you must take with every meal. The enzymes will help you digest food better and gain weight.

Avoid smoking and drinking alcoholic beverages, even if your pancreatitis is mild.

Other treatments may involve:

Pain medicines or a surgical nerve block to relieve pain

Taking insulin to control blood sugar (glucose) levels

Surgery may be recommended if a blockage is found. In severe cases, part or all of the pancreas may be removed.

Prognosis:

This is a serious disease that may lead to disability and death. You can reduce the risk by avoiding alcohol.

Complications include:

Ascites

Blockage (obstruction) of the small intestine or bile ducts

Blood clot in the vein of the spleen

Fluid collections in the pancreas (pancreatic pseudocysts) that may become infected

Poor function of the pancreas

Diabetes

Fat or other nutrient malabsorption

Vitamin malabsorption (most often the fat-soluble vitamins, A, D, E, or K)


Since I was having trouble figuring out what Chronic Pancreatitis was...I thought I'd clue you in on what I know about it.

While this will probably be with Phil the rest of his life, we were pretty optimistic after his appointment today.
Although the specialist could tell us more about this "disease", she was pretty reassuring that if they hadn't found any abnormalities in his blood work just yet, he at least doesn't have cancer. WAHOO. When the doctor told him this, Phil turned white. Whiter than I had ever seen him in my life. I guess that has really been weighing on his mind. So he feels a little better about all this doctor business stuff.

So the notes from today went something like this.
I have a note book that I take so I can take notes at his doctors appointments.
I first listed his symptoms which have over the past two weeks include:
Fevers
Chills
Sweating
Nausea/vomiting
Trouble sleeping
Excessive pain that won't go away with pain medicine
No response to the Celiac Plexus

Our goal at this appointment was to:
Get a referral to get a second opinion at another GI
Question if we should see any other specialist
Any other auto-immune disorders (we will ask the specialist to test for auto-immune diseases)

The outcome of our appointment was:
Continue with Pain Management- best bet to get through this
Get Splanic neurotomy (like the Celiac Plexus but will permanently kill his nerves and if nerves grow back they should not be painful).
Referral request sent in for another GI
Request an Ultrasound/scoping for the pancreas

SSRI's can cause Chronic pancreatitis (did not know this before talking with this doctor)

Weekend Update

Well despite feeling horrible I give Phil and A for effort for attempting to "get back to normal" and get through the weekend.
He got out of the house for a bit yesterday and today he was out of the house for a while also.
YAY!
But he's still in a lot of pain.
I give him an A for his attempt to still do normal stuff.

So we got through the weekend and tomorrow we are off to the pain management appointment.
I plan to still call for second opinions this upcoming week.
Thanks for all of your prayers and your input!

A moment of clarity

So I had a moment of clarity when I woke up this morning.
For the few months that Phil was feeling well, except for going to the scheduled doctors appointment and the surgery, I made no effort to call and schedule extra appointments. There didn't seem to be a reason to since the treatment plan he was on was working.

Well this week. I don't know what happened differently but if you read my previous blogs, something is gone totally wrong.
This morning I think God spoke to me.
This idea of getting a second opinion was really strong. Not only getting a second opinion from a different GI (although the GI he has now is supposed to be the best one in town). I had a realization that maybe we should visit a neurologist. Maybe the problem isn't actually his inside parts but a neurological issue that's causing all this pain. So my plan this week.
We see pain management on Monday.
Call the family doctor get a referral to both a neurologist and a new GI.

We'll go from there and see where we are at.
He also has to get his blood work done, both for the current GI he is seeing and for the allergy clinic that he goes to.

I absolutely can't believe he is back in this much pain again. He was doing so well.

Another Day

Day two of waking up and almost going to ER.
Back to the routine of sitting a bath and taking a handful of meds to get the pain to go away.
This time Phil was only able to keep the pain away for 4 hours (its supposed to last 6 hours with one and 12 hours with the other).

Went for a small drive this morning since Phil has been home almost all week.
But again, it was like he ran a marathon and is now in and out of sleep.

He gets hot and cold. He sweats then is freezing.
He is doing better about not complaining....but today it must be bad because he's been doing a lot of that complaining stuff.

I must have been born in the wrong family....
My mom was totally awesome (at least with me and my grandmother) when we got sick. She took great care of us.
Unfortunately I didn't inherit that empathetic gene from her, so I feel kind of stranded. Actually I've learned to deal with it by taking the doctor approach. I question him about his pain, where its hurting, if he thinks he's taken or done anything differently, then bit by bit I question until we think we've pin-point the problem thus finding a solution.
Probably not a great way to do it, but I guess thats the only way I know how to deal with it.

We have an emergency appointment with his pain management team on Monday.
Cancelled another appointment.
Getting more blood work done.
Going to get allergy shots next week.
Made an appointment with GI for the beginning of February.

The Talk

This morning Phil and I had the talk.
His last pain management regiment went really well. Really well. So well, I wish we could do that one all over again!
I'm not sure if this Celiac Plexus just didn't work as well, they didn't hit the nerves just right, or maybe they missed something or maybe lowering the pain medications was a bad idea this month?
He is more uncomfortable now. We spend most days in our pajamas, ok Phil spends most days in his pajamas. Some days he makes a real effort go get out of the house and we go and do stuff around town. Usually it only lasts about 4 hours and he's back on the couch sleeping like he just ran a marathon.

So this morning, we had the talk.
"Will I ever be able to work for someone else again?"
"Could I make it on the job for a week with out calling in sick?"
"What if the doctor overlooked something?"
"What is this node they keep talking about on my pancreas, that supposedly isn't anything to worry about?"
"Should we get a second opinion?"
"WHAT IF ITS CANCER?" (of course I tell him to be quiet after this)
But then....it sets in. "What if it is?"
So we discuss this further. Other treatment options, second opinions, further testing etc.

Can Phil really just go on living his life through Celiac Plexus, morphine, percocet, and a hand full of other medications that he takes daily, or multiple times a day? Really?
We have no accurate account as to what is really going on. Why treat symptoms if we don't know the cause? Isn't the cause more important than treating something we have no idea what we are really treating?

One thing, I'm sure its not just one thing.
The nose surgery helped.
Next on the list is the allergist.
Get weekly allergy shots.

But allergies aren't connected to the stomach.
Its frustrating. I really really wish things could go back to normal. But if I can't take normal, I'd really like for things to go back to October-December 2011. That was the best he has felt in just over a year.

Some days he wakes up thinking that he might have to go to the hospital. Great. He goes to the hospital. Then what? What do we tell them to look for? They are the doctors, they are supposed to know this stuff but every time we've gone in, they look at us for answers.
So then, do we wait it out and call the doctor? But which doctor do we call? Do we call the pain management about the pain? Do we call the GI Specialist about other underlying issues that could be causing all the pain that he is in? Do we call the family doctor to see if maybe we could just get a referral over to the hospital so our wait isn't so long when we go?

I do have to say, Phil is a super trooper. He has kind of taken to his hobby, but honestly I don't mind. Because it keeps him busy, it keeps his mind off things. But mostly I love his hobby because he doesn't complain. In August when I first started staying at home with him. He would complain everyday. He would lay on the couch, and moan, and groan, and get snappy. He now has sucked it up, learned to deal with it for the most part. On days he really doesn't feel well, he will lay on the couch and either just watch TV or sleep. He doesn't complain (except for today). He has been amazing. Really and truly.

Last week we had Ava home with us for winter break at her school. Although she was sick the entire week, we all sat on the couch watched movies and TV. I'm not proud to say that my daughter now knows all the names of the cartoon characters on TV. Not a proud moment. But it was relaxing. I really saw the bond between Ava and her daddy grow ten fold. He has always loved her and he has done things for her but last week was an amazing exception. He held her, he gave her high fives. They cuddled and he helped her out with her bike and her colors and food and everything. He did good.

Hopefully we will get through these stupid medical humps and be on our merry way. Hopefully someday he will be able to live with out the medication. And hopefully someday we will find the cause for all this craziness.