Living with Gastroparesis

This year, in May of 2012 my last grand-mal seizure put me in the hospital for observation with a VEEG until I had another seizure. This was not going to be exciting and it wasn’t. Most of my seizures were weeks to months apart and I was afraid that either I would leave with no seizure or have one and get a diagnosis I wasn’t prepared for. Turns out, I had another grand-mal seizure after they slowly reduced my ativan to nothing and from that, they diagnosed generalized Epilepsy and started medication treatment immediately. After a few days on the medication I was released with strict rules to follow regarding this medication. During my stay and after the seizure, however, I complained about the worst back pain I had ever experienced. Everyone shrugged it off telling me, “this is not why you are here. You are here for seizures, not chronic pain.” Um…this is not chronic pain, this is ACUTE pain. You know the kind that makes you want to scream every time you breathe, move, stand up (nearly impossible) or sit down. I waited a day just for a doctor to prescribe a heating pad. Really? So they made me think it was all in my head. If anything it was a muscle pain, like a charlie horse in my back from my intense grand-mal seizure.

After 5 weeks of my moaning and complaining and very unusal appearance to my husband, he took me to the ER because my less-than-helpful PCP would not schedule me for an emergency appointment (I know they exist). So I had no other choice; I went to the ER. They were skeptical too. “Are you pregnant?” they would ask. Uh, not a chance in … was I pregnant. “Are you willing to provide a urine sample?” If it gets you off my back about it, yes! After 2 and a half hours of lying there crying in pain the doctor comes in with my films and simply stated, “Well, I know why you are in pain.” Thank you, thank you, thank you, thank you – more vindication for me, not in my head. He proceeds to show me my x-ray of my spine and wouldn’t you know it, a completely crushed L1 vertebrae. We hypothesized this happened during my seizure in May and that the muscles contractions during it pulled that bone apart. Painful? Yes…there are no numbers on their scale of uselessness to explain this level to them. “Those injuries hurt really badly.” Hey thanks, I know, what are YOU going to do about it? Well, the position of the break is one where we can do nothing. I consulted a surgeon and he said he could do nothing to help other than offer a body brace (something like a body cast but could be removed when lying down). Out of the humanity in his heart he offered IV Dilaudid which helped a TON. Nothing at home would touch the pain because what I had at home I was already using to make my already present chronic pain tolerable. I attempted to go in for pain help a week later as it was preventing me from sleeping and they gave nothing but IV torodol and benedryl. I’m thankful for that much but would have rather had something for my pain. Instead I got a muscle relaxant and medication for my progressing UTI that popped up that day.

So, I’m struggling. Trying to take it one day at a time, one hour at a time and living for good days that seem to be getting further and further apart. I often wonder if anyone is listening to me and believing in what I am saying when I express pain through teary eyes. With all my medical issues, do I really look like some drug dealer off the street? I have an appointment with one of the most amazing pain specialists in the state on the first of August and hope he can provide me with something else as I know the limits of a PCP or any other specialist are heavy due to the messed up Washington State laws regarding narcotics, as if they have some right to determine who is really in pain and who is not. I’d like to break a few of their bones, give them the throw-up flu and infect their bladder and deny them pain medication and see how long they’d last. Certainly not as long. After tomorrow, I will be finding a new PCP and my wonderful friends on Facebook have pointed me in the direction of the University of Washington. My geneticist is there, so I figured I would give it a shot. I really can’t do any worse than I have with my current doctor.

Sorry if this post is a bit negative. I am very much dreading my appointment with my PCP tomorrow. I hope she has her crap together because so far, she hasn’t. No return on my phone calls or e-mails unless she has something negative to say or something that would make me work harder than is necessary to get something accomplished. Sometimes I feel like giving up but it is people like my GI (Dr. David Patterson) who keep me going forward. He actually called me and asked me to come in. Feeling as if I had done something wrong, like you feel when your father uses your middle name and calls you into his office (you KNOW it won’t be good), but he assured me it was merely a check-up and to review my medications. That is the first time I had an appointment scheduled not by me, but my doctor. It is apparent he is thinking about me and worried/wondering how I am doing. For that I am grateful. In this whirlwind of life I lead there are a few constants, my husband and family, and my GI doctor (who I have been with for at least three years).

Anyway, it is late and my appointment is early. Good night everyone and good luck.

~ Happy Tummy Days!

Share via email

Sorry, again, for not updating. At the end of December, I was hit with another disorder that sort of the last straw. I completely broke down. I went through numerous tests after realizing in the hospital, I was not urinating as often as I should nor did I have ANY sensation. When I had a follow up with my PCP, I mentioned this to her. She immediately put me in touch with a urologist and within days I was subjected to rather embarrassing tests that stripped me clean of any sense of dignity I had left. The result of all my testing (as a whole it is called urodynamics), I was diagnosed with a neurogenic bladder. This combined with my intestines slowing down even further, requiring the most powerful of laxatives, GoLytely, to be pumped through a nasal tube fed into my duodenum.

I became very upset and felt that everything in my body was weakening or stopped altogether. I was not in a place to blog. So that is why it has taken me so long to write.

But, I’m back now. I was just released from the hospital 4 days ago. I was admitted from the ER on 1/4/12 for a suspected portacath infection. I have never had issues with my port until now. Days prior to the admission, I noticed my port had issues flushing. My nurse even said it was requiring more pressure to flush than usual. It stopped drawing blood a few times that month, requiring me to go to the ER and have them re-access and TPA the line. I wasn’t at all suprised they would think infection but when the ER remembered I had a MRSA infection not to long before, they didn’t want to have anything to do with me and rushed me out of the ER (they have a free standing ER with doctor offices above) to the Swedish Issaquah Hospital for further testing and antibiotics. I said that correctly, Swedish Issaquah Hospital. I gave them a second chance. If you do not remember what happened last time, read the previous post. I was totally on them for everything, this time. Making sure I stood up for myself and get what I needed to survive a potential septic attack. I was put on contact restrictions, meaning everyone coming in had to wash their hands, put on gloves and then put on a yellow gown. This isolation was in effect for the entire 10 days I stayed.

Since they couldn’t use my port, I had to be given everything through a peripheral IV line. Those, for me, don’t work very well. The first IV line was placed by a nurse at the ER; they wanted to get me on antibiotics ASAP, so the IV would let them give me a dose before the ambulance arrived. *Sigh*

The nurse that I had made everything worse. I never had issues with their staff at the Redmond ER but here I was, striking out again. My nurse had tremors, and they were very bad. I sort of felt bad for her because I, myself, suffer from slightly shaky hands. But when she made too many mistakes because of her shaking hands, I began to get irritated. So many people would stop by and ask if she needed help (because the process was taking WAY too long due to her tremors – and they knew it too which is probably why they so frequently asked if she needed help) and she’d yell back at them, “I’m FINE!” So she manages to get a peripheral line in on the first shot with minimal discomfort. However, she did not secure the line before she took both hands off the needle to get the dressing and tape and with that, the needle came out. She told me that it was OK and she’d just use the same hole. Um, yeah – if anyone tells you that, don’t let them touch you. She did go through the same hole but of course the vein is bad now and she just dug and dug around trying to get the needle into my vein. I was practically crying in pain when she finally got it in. This was all after she clotted my port. The port was drawing blood and they needed that blood for a culture. It gave enough for the culture and then while drawing regular labs, it stopped. My only guess is that her tremor hands pulled the needle out just enough to look like it is in when it is not. So she had to draw from another vein. With tremor hands, it was another painful process and one that went so incredibly slow. They actually told the ambulance to hang back 30 minutes because she wasn’t nearly close to being done. *Rage*

I have never been so happy to see an ambulance stretcher in all my life. It meant no more sticks with the lady who had tremors, no more unnecessary pain! I got to ride again, in the ambulance. The guy back there was fun. We talked about all the old-school stuff we played with as kids that kids today would not be able to correctly identify. It was raining and the roads were jammed; it was a loooong trip to the hospital. But I was doing relatively fine. I was nervous, however, about how I’d be treated this time versus the last time. I got put on a different floor in a different ward with new people (for the most part). They were amazing. They didn’t take hours to check in on me when I asked for someone and I got my all the medicines I needed when I needed them (things like my depression medication and sleeping medications are on a rather strict schedule and cannot be missed).

Because I was in for an infection and not an ileus, I was allowed proper pain medication to help control it. I had that come every two hours with benedryl every 6 with my zofran. It worked very well. The nurses were even nice enough to help me with showers.

Ellie and my husband were constant visitors. He brought stuff to my room to help make it happier. All the nurses would come by just to see it and I was said to have the “coolest room.” I won’t lie, it was cool. Just because you are on contact precautions, doesn’t mean everything has to be plain.

A few days after I was admitted, they removed my port. I was so sad to see it go. They removed it before the cultures came back because of the intense pain I was describing. They didn’t want to take any chances and really, I didn’t want them to either. A few days after that I got a PICC line so I could run my TPN. Well that was another adventure.

The lady came in to do my PICC bedside. I was not exactly thrilled about this idea. I’ve always had them placed in IR. But OK, I trusted her. Once she placed it she asked me how I felt. I told her I heard something weird and now my neck hurts. I think your line is fine, let me get the X-ray people. Sure enough, the line went straight up my jugular. Not in position! So she pulls it back out and tries again. “Did you hear anything this time?” she asked. No, but now my shoulder that has been unbelievably painful is now in more pain. I told her it wasn’t in place, I know, I can tell. Again with the X-ray and again, not in place. She asked me if we could try again and if not then she’d pull it out to make a midline, and that would allow higher nutrition fluids to be given instead of the regular IV stuff. I’m like no, just do the midline now and I’ll see IR on Monday. Monday was a few days away but I didn’t want to be put through that all over again. She does the midline and later the nurse comes in to draw blood and bam, no blood is coming out so now it is completely useless.

When I finally got up to IR, they just used the same line and was able to put it into my SVC (superior vena cava). Took them like 3 minutes. Now I have a PICC line again.

The only thing I like about it is that it has two lumen. (GO –> HERE <-- for excellent information on Central Lines or CL) Otherwise the downside is that it gets pulled and yanked on by tons of things like chairs, doors, couches and my dog, Ellie. My new port will be placed on the 23rd of January. My ID (infectious disease) doctor said I needed to wait a week after finishing antibiotics before they could put in a new CL. The interventional radiologist decided, along with my GI doctor that a port would be better than a Hickman. My GI has seen Ellie and knows that anything that dangles has the potential of being pulled out. With a port, you don't lose access, you just need a new needle, should it become dislodged, as it has in the past. I was kept until I was able to control pain on liquid medicine instead of IV. They never did grow anything from the cultures so they have no idea where my shoulder pain came from. It isn't completely better and I'll need to go to physical therapy for it, but it definitely isn't as sore as it was while in the hospital. I'm glad I gave them another chance. I wouldn't have met all the nice doctors and nurses if I went to the one down in Seattle. The Swedish Hospital in Issaquah is now my hospital of choice! And to top it off, they make the best vanilla milkshakes in the whole entire world. Not joking.

Share via email

The weather has finally cooled down a bit and this has made my stomach and head happy. I got enough energy a few weeks ago to venture out and try to rock climb a bit. I like the challenge the TPN backpack adds. Climbing with a few extra pounds on your back and a tube hanging around makes me just that much stronger! Here are some pictures from my adventure. I haven’t been back since because my pain returned in full force, leaving me homebound.

I’ve been seeing a pain specialist in an effort to control my pain. We attempted first, with trigger point injections. I basically told him where my pain was focused and he injected numbing medicine into the area. It was unsuccessful. Our next plan is to do a TAP nerve block. It will be done using ultrasound as a guide and I’m sedated for the procedure. Following the procedure, we will either attempt a celiac plexus nerve block using flouroscopy or go straight to a spinal cord stimulator. I’m hoping we can control the pain with just that last procedure but if it doesn’t work, I’ll end up with a pain pump. Both my doctor and I agree that a pain pump would be the last option as we are trying to find ways to get off medication. A pain pump would get me off oral medication but still release pain medication into my system. The spinal cord stimulator wouldn’t use any medication. We will have to see after my first nerve block next week. I hope it goes well.

I also pulled out the pictures from my last EGD/sigmoidoscopy scope.

I hope you are all having happy tummy days and enjoy your upcoming weekend!

Share via email

Taken from Hyperbole and a Half: I’ve been in some state of pain most of my life and have experienced many versions of the pain chart seen below (this is the chart I refer to as the “pain scale of uselessness”). Due to an unexpected procedure cancellation that was supposed to be diagnostic in nature, I stumbled upon a useful article I had saved from many months ago that made me smile. I post it here as many of you will find it nearly 100% accurate. Enjoy!

You’ve probably seen some version of that chart before. You may also have noticed how inadequate it is at helping you. Based on the faces, this is my interpretation of the chart:

0: Haha! I’m not wearing any pants!

2: Awesome! Someone just offered me a free hot dog!

4: Huh. I never knew that about giraffes.

6: I’m sorry about your cat, but can we talk about something else now? I’m bored.

8: The ice cream I bought barely has any cookie dough chunks in it. This is not what I expected and I am disappointed.

10:You hurt my feelings and now I’m crying!

None of that is medically useful and it doesn’t even have all the numbers, so I made a better one with all the numbers:

0: Hi. I am not experiencing any pain at all. I don’t know why I’m even here.

1: I am completely unsure whether I am experiencing pain or itching or maybe I just have a bad taste in my mouth.

2: I probably just need a Band Aid.

3: This is distressing. I don’t want this to be happening to me at all.

4: My pain is not fucking around.

5: Why is this happening to me??

6: Ow. Okay, my pain is super legit now.

7: I see Jesus coming for me and I’m scared.

8: I am experiencing a disturbing amount of pain. I might actually be dying. Please help.

9: I am almost definitely dying.

10: I am actively being mauled by a bear.

11: Blood is going to explode out of my face at any moment.

Too Serious For Numbers: You probably have ebola. It appears that you may also be suffering from Stigmata and/or pinkeye.

Share via email

Sorry for the late post on this, but I had a few complications after the botox injection. I experienced quite a bit of pain for days after the procedure and made several ER trips to help control that pain. The EGD and sigmoidoscopy procedure went really well. Dr. Patterson says my colon and stomach looked healthy except for a non-functioning esophageal valve and unusually tight pyloric valve. That is where he injected the botox. I still haven’t noticed any difference. The procedure was performed on the 23rd of August. I plan to make an appointment with him next week to see where we go from here. I hear multiple injections are needed to notice a difference but if I experience the same pain for up to a week after, I’m not really sure I want to continue unless I’m offered better control for the pain. It was not good times.

As of now, I’m back into my normal routine. Pain continues to live with me at an 8 on the scale of uselessness. Migraines are flaring up more often due to the abnormal heatwave we are experiencing. I can’t wait for fall and winter where I can enjoy being outside and not having to worry about my energy being zapped by the sun or getting sick and dehydrated. My weight is being beautifully stable at around 110, thanks to TPN, the only form of nutrition that has worked for me with no pain. I run it on a 20 hour cycle starting at 9pm, ending at 5pm the next day. I get 2000ml of fluid in which there are 1450 calories. I supplement some of those calories with a few scoops of the only ice cream I can tolerate, Sherbet (tropical flavor!), at night. Believe it or not, the ice cream is doctor ordered. They say you MUST put something in your mouth and in your gut to keep it from completely dying off. No matter what it is, or how small – something must go through it. This is all I have found that works and I don’t feel like rocking this boat by trying something new. Not yet anyway.

Exciting News: I have received a smaller version of the same feeding bag I use, to check out and make sure it would work as mine does so I can 100% recommend it or not to other tube feeders. I still have not received the smallest of the bags, and will be writing again soon to see if I can get my hands on those. I can’t express it enough, I love my feeding bag. It is so comfortable I have actually fallen asleep on the couch with it on. I’ll have to make a video on how to properly load a feed into it as it gets a little tricky (my husband had some problems with it so I figured some others might as well). This weekend is going to be a nasty one, in terms of weather, so if I manage to stay out of the ER, I will do my best to get a video up and my pictures from the scope I had last month. It is interesting for those who haven’t seen or had one done before =)

Happy tummy days, keep hydrated and stay cool!

Share via email