I don't know where to start

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Regular Member

Date Joined Feb 2009
Total Posts : 487
   Posted 6/18/2010 12:08 AM (GMT -6)   
Hi all,
I have not posted about myself in quite some time, I've just been so overwhelmed and I really don't know where to begin.
The last time I posted, I had just started seeing a new doctor to manage my intrathecal pain pump, and he had switched my pain medication from dilaudid to sufentanil, kept the bupbivicaine, and added clonodine.  He started me off at a very low dose of sufentanil, and I went through terrible withdrawals.  He had increased the sufentanil a couple of times, usually 2 mcg at a time, and then once he gave me a big increase of 6 mcg.  Some days I feel like it is helping to some degree, I feel like I recover a little quicker when I push myself and overdue things, but most days my pain level is still at a steady 8 with spikes to 10.  During this time period of titrating the medication, I have felt much more dependent on my breakthrough meds., to the point that I would be watching the clock begging for time to go by faster so I could take my next dose.  I asked my regular PM to allow me one extra dose of my roxicodone per day for a couple of months until the pump is managing my pain more effectiviely, and to my surprise, he agreed.  The doctor managing my intrathecal pump wants me to get this device called a PTM that would allow me to give myself bolus's as needed, but if I wait until the pump itself needs to be replaced (due to the internal battery dying - which will be in about 9 months), it will not cost me anything.  If I get it now, I have to pay for it out of pocket - and it is over $1,000.
In addition to my high pain levels, I have been having chronic nausea and diarrhea for months (actually, it's been years if I'm being totally honest).  It started when I began taking Metformin (Glucofage) when I was dignosed diabetic 4 - 5 years ago.  As time has gone by, and the doctor has had to increase the dosage of the Metformin to get my sugar levels under control,  my other symptoms have gotten worse.  I have been to 3 different endocrinologists, and they all agree that due to a condition I have called gastroparesis, there is no other oral diabetes medication they can give me that won't complicate the gastroparesis.  Gastroparesis is a horrible condition in which your digestive system slows way down, or in my case, completely stops.  When I would eat, the food would sit in my stomach and rot, and I would begin vomitting uncontrollably, and no amount or type of anti-nausea medications would even slow it down.  I also could not keep down my pain medications, or absorb them properly, so that on top of vomitting constantly, my back pain was out of control, and I would go through terrible withdrawals with each episode as well.  I was hospitalized 11 times in less than a year, and came out with a different diagnosis each time - they even took my gallbladder out, and it was not the cause of the problem.  There are only 2 medications for this problem, and one only works in 20% of the people taking it, and we already knew it did not work for me, and the other one, I am allergic to.  The doctor who finally figured out what was wrong with me did some research and found a doctor who was doing this "new" treatment where they implant the exact same device as the SCS, but in your stomach, and they call it a "gastric pacemaker".  The idea is that it stimulates the stomach to open and close so food moves through the digestive system and doesn't get stuck in the stomach to rot.  I was the first person to have this condition as a result of narcotic pain medication (narcotics slow the "motility" of the digestive system, & that is what was causing my digestion to slow to a stop).  This device has done wonders for me (I wish the SCS in my back worked as well), I have only had one major episode that required hospitalization.  I have a lot of nausea, and as much as it sucks, it is nothing like the nausea I dealt with for that year when they were trying to figure out what was wrong with me. 
Anyway, I am really struggling to deal with the nausea and diarrhea on top of my high pain levels, and the doctors don't know what to do with me.  They don't want to change my diabetes medication (they question if that is truly the root of the problem), & they don't want to give me anything to slow down the diarrhea, because both of these types of medication also slow down the motility of the stomach, & they are afraid that it will start that cycle again.  But, in the meantime, I am chained to the bathroom with a bucket in case I throw up, and all of this sitting on a hard toilet seat is killing my back.  Also, the gastric pacemaker will be due for a battery replacement soon, which will require surgery (as will my SCS, and my intrathecal pump - even though they were all implanted at different times, it just so happens that all of the batteries in them are running out at about the same time).
In addition, my husband suffers from Ulcerative Colitis and Crohn's disease.  Several months ago, he had an intestinal blockage that resulted in him being hospitalized for a week, but low dose steriods, and strong antibiotics did the trick, and he was doing quite well.  He's been having some issues with mild attacks from the Chrohn's, but several weeks ago, he had a really bad one.  I had to call an ambulance because I could not get him up off the bathroom floor.  They gave him morphine and anti-nausea meds and lots of IV fluids, and after 12 hrs or so, they sent us home to follow up with our own doctors.  He went to our PCP the following day, who after giving him more pain and anti-nausea medications along with IV fluids, wanted him admitted to the hospital, which he refused.  The following day, he went to see our GI, who also wanted him admitted, and again, he refused.   By the following weekend, he was getting weaker and weaker by the day, and that Saturday night, he was a mess.  I called the answering service for our GI and explained what was going on, and he said to bring him back to the ER, or if he could make it through the night, to bring him to their "Urgent Care Center" where he would come and evaluate him.  This time, they did not give him a choice.  They did bloodwork and a urinalysis, and they showed that his kidneys were very close to completely shutting down (from extreme dehydration)- they were working at 20% of their normal capacity, and the doctors said that if they went any lower, he was going to have to be put on dialysis.  Thankfully, after a week in the hospital with IV fluids and medications, his kidney function was up to 50% of what it should be, and he was feeling somewhat better.
Last Friday, one week after being released from the hospital, he was working at a stockcar racetrack where he is the assistant flagman (quite high up in the air, in a little booth, him and one other guy, overlooking the track, waving the different flags that tell the cars when to go, when their is a caution due to an accident somewhere on the track, and giving the checkered flag at the end) and a piece of a car or a large rock was propelled off the track by a car, and hit my husband right smack between the eyes and knocked him out cold!  He was taken to the nearest head trauma hospital about 1 1/2 hours from our home, and thankfully, he only wound up with a concussion and whiplash.  But, our only car was at the racetrack, so I had to find someone to take me to go and get him in the middle of the night, drive to the track to pick up the car, and then drive him home.
Then this past Monday, I had an endoscopy and colonoscopy because of the stomach issues I have been having, and that evening, I asked my husband to go and get me some ice cream as I had a terrible sore throat.  On his way back, he hit a deer, and did $2500 worth of damage to our only vehicle.  Thankfully, our insurance covers 1/2 of the rental car we now have for at least a week while they fix our car.
This is literally, just the tip of the iceberg - I could go on and on, but this has gotten long enough, and I am very sorry for that.  The biggest thing I am asking for in all of this is some support and prayers to help me cope with my constant high pain levels, and the stomach issues.  I really feel like I am reaching the end of my rope.  Thanks for taking the time to read all of this if you made it this far.

Veteran Member

Date Joined Nov 2007
Total Posts : 6795
   Posted 6/18/2010 1:18 AM (GMT -6)   
Wow. I can hardly believe what you and your husband have been and are still being put through! It made my jaw drop to read your story.

I so wish I had a magic wand to wave and make things better, but I certainly can offer my support and many positive thoughts to send your way.

And of course, lots of healing hugs.



Veteran Member

Date Joined May 2010
Total Posts : 594
   Posted 6/18/2010 4:48 AM (GMT -6)   
Lorie, oh my gosh....I do not know what to say! I am sooo sorry to hear about all you have been going through! My heart goes out to you and your husband! I will keep you in my thoughts and prayers! Hang in there and take care of you!


Mrs. Dani
Veteran Member

Date Joined Jun 2009
Total Posts : 2787
   Posted 6/18/2010 11:40 AM (GMT -6)   
   Dear Lorie,
    I am so glad to hear an update from you. I have often wondered how you were doing latly. Though gosh.. I would never have guessed in a million years that you were going through so much! I am so terribly sorry your life has been turned up side down. *hugg* You have so much going on .. I am completly shocked! I am reeling after reading your update.
     One thing I did notice right away is your ability to take care of each situation quickly and efficently. There is something to be said for that. You keep your cool, get to work taking care of the most pressing situations, then get back to completing the things you already had going on in the back ground. My gosh you are an increadibly strong woman, no doubt. Were I in your shoes I would have lost my cool and dropped the ball. Yet you take charge and get to work at a moments notice. *hugg*
     I really hope your husband is okay. Was he hurt in the car accident aswell? With everything else he is dealing with, no doubt he is greatful to have you for his wife. I do hope the insurance getts your claims taken care of quickly. The last thing you need right now is more hassle.
    I am so sorry that you are dealing with so many health issues on top of EVERYTHING. It doesnt seem fair atall. The probl;ems with the medication and your stomach seem to be leaving you and your doctors hands tied. That is frightening to say the least! It seems to me you have almost no options to turn to if the tests and scanns come back showing problems. I sure hope there is someway, anyway for them to help you.
     I wish I had some advise to give or some way that I could help. You are such a caring and loving woman it just isnt fair to be..gosh over loaded with so much! I do hope that you are able to find atleast one day where you can take it easy. Please know you are in our prayers here. Stay strong!
Two roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
Chronic Pain Moderator

Veteran Member

Date Joined Mar 2008
Total Posts : 3089
   Posted 6/18/2010 1:04 PM (GMT -6)   
((((((((((Lorie)))))))))))))). Thanks for the update. I'm so sorry to hear that you & your husband have been having such a rough time lately (to put it mildly). Hopefully things begin to look up soon. There is only so much bad stuff that can happen, right?

Hang in there! You & your husband are both in my thoughts & prayers.


Veteran Member

Date Joined Jan 2010
Total Posts : 1097
   Posted 6/18/2010 2:30 PM (GMT -6)   
Lori, my heart goes out to you and your husband with all you are facing. Please know I am praying for you both, for things to get better and for your health issues to be resolved (or at least dampened to the point you can get some relief)

hugs and good thoughts,

Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoroacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily

Pete trips again!
Veteran Member

Date Joined Nov 2006
Total Posts : 1899
   Posted 6/18/2010 3:25 PM (GMT -6)   
Lori, You are always there for me and so many others here and I had no idea how awful things had gotten for you! Please don't wait so long to tell us next time as our prayer can't help you if we don't know! I was floored after reading your post! It's just one thing after another and that horrable condition w/ your stomac for so long! It gives me shivers thinking about it! Tell your Husband that you have the H.W.C.P. team behind you 100% with many prayers coming your way! So sorry for all you have been through! I'm sure you will turn the corner soon and see light at the end of the tunnel!! Hang in the , you are such a strong, caring Lady! Big Huggs Coming Red Label!!!
Your Buddy,
When I was young & stupid I broke almost every bone in my body and I'm paying a heavy price now but I'm still here and so glad to see my two sons grow up to be fine young men, both are in the Navy. I'm so proud! 

Regular Member

Date Joined Feb 2009
Total Posts : 487
   Posted 6/18/2010 4:45 PM (GMT -6)   
PaLady, Antbuggy, Skeye, Dani, Ms. Bunky, and Pete:

I can not begin to tell you how grateful I am to you all for taking the time to read my update, and for your kind words, well wishes and prayers. I am sorry that I waited so long to post - Pete, what you said about your prayers not being able to help if you don't know what's going on really hit home. You are so right, and I will not forget it in the future!

I know we all have lost what we thought were the very best of friendships that "could stand the test of time" because of our CP, and I have become used to isolating myself, pasting a smile on my face, and when people ask how I'm doing I give the standard answer "hanging in there" because I know most of them don't really want to know the answer to that question. I have to remind myself that it is different here at HW, and I am very grateful for that.

Thankfully, my husband was not hurt in the accident hitting the deer. I picked up the car this afternoon, thankfully dealing with the insurance company and getting it fixed all went very smoothly & it is now just a bad memory!

Thanks again,


Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 6/18/2010 7:35 PM (GMT -6)   
Hi Lorie,

I really like what you wrote in your last post... you are exactly right - most of us do paste on a smile and say "hanging in there" - because, the real answer - for most - would be too much for most to take, right? :) But I love what Pete said..and completely agree...that you have to share, in order for people to pray and help. Thanks for taking the time to update us on how things are for you.

You (and your husband) have been through way too much... I don't even know what to say.... other than you are one strong woman to have made it through all that stuff. Really. I'm so sorry for the terrible pain you've been suffering through, and I totally remember you posting re: the withdrawals w/ the switch of meds in your pain pump. Withdrawal is horrible in any situation, but I can only imagine it was intensified, due the pain pump and all.

Ahhh, the stomach stuff. It sounds miserable, my dear. I've had cyclic nausea/vomiting for about 18 months now, due to a combo of things - mostly related to my adrenal problems.... and it's horrible - but nothing compared to what you've been through. I've been hospitalized many, many times, too - for these things.... it's sad when you have friendships at the hospital cry I pray that all of this gets better for you, Lorie. I hate to hear of you suffering so much. I'm sorry, too, for all the stuff your husband has gone through...

Prayers are definitely coming your way re: ALL of this... I really pray your pain decreases, and that your stomach stuff resolves, or at least gets better. I pray that better things are on the horizon for you and your family, Lorie. Know that there are people here pulling for you and standing behind you... Hang in there!

Take care... --Tina
Main Health Problems: Dysautonomia/POTS; CFS/Fibromyalgia; Severe Chronic Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; Severe Vitamin D Deficiency

Pain Issues: Cervical/Thoracic back pain (they called it DDD...but I don't know); migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; Future Plans: Intrathecal Pain Pump; already completed trial (Sept, 2008); awaiting my decision for implantation...

White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3696
   Posted 6/18/2010 11:26 PM (GMT -6)   

I am glad you shared this with us, and you can always share with us, leave that smile in the drawer, you don't have to paste it on for us, you can just be your self. Some times things just keep piling on and you wonder how much more you can endure! It trueling is amazing how much one can endure! Maybe ( hopefully) by sharing with us, it will lighten your burden a little, I hope so anyway! Because that is what I would like to do for you! Share in your burden and lighten your load, and make life easier for you! To give you support when you need it the most! You do have friends her at HW that do understand!
I keep you in my prayers and may Peace be always with YOU!

White Beard

Veteran Member

Date Joined Apr 2010
Total Posts : 2261
   Posted 6/20/2010 6:27 PM (GMT -6)   
Oh Lorie  You and your husband have been going thru so much.  Bless your hearts.  I've got tears in my eyes.  I'm so sorry that you're in such pain and that your stomach is so bad.  My thoughts and prayers go out to you.  I sure hope you feel better really soon.  You take care.
love and  hugs
Dx:  ddd, spinal stenosis, bone spurs, hypothyroidism, typeII diabetes, asthma, allergies, high blood pressure, polycystic ovary syndrome, PTSD, depression, anxiety

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