My Relationship With Chronic Pain

For the past few years, I’ve been very honest and open about my journey with Gastroparesis, it’s been one of the main chronic illness I talk about. So I decided to talk about another pretty major part of my life.

My relationship with chronic pain started when I was 12 years old. It was winter time, and I was doing a indoor winter conditioning camp for softball. During the camp, after a throw my right shoulder started hurting. Turned out, I tore my labrum pretty badly. So at age 13, my first surgery in was done in January and my surgeon cleared me for surgery that following season. I think I was cleared too soon to return to playing softball again because soon it was re-torn. I managed to play through the season, pushing through the awful pain I was eventually placed as a designated hitter. That was my very last season of softball, one of the biggest passions I’ve ever had.

Eventually I couldn’t handle the pain any more and hoped a second surgery at age 17 would fix my problem. But I was wrong. I remember the pain from that surgery being so extreme, I slept in a recliner for weeks. I’ve done so many hours of physical therapy for my shoulder, and it’s never really helped. Unfortunately the 2nd surgery was also unsuccessful.

During a follow up with my Orthopedic Surgeon, I decided to mention to him how I was also having pains in other joints. Hips, jaw, back, knee for the past 2 years. So he ran blood work, and sent me to a Rheumatologist. The doctor I saw, did some tests and gave me a diagnosis of ” fibromyalgia with hyper mobility” then handed me some brochure, and a handful of different medications. Unfortunately there weren’t very many in the area at the time so it was hard to find a good one. My body was so overwhelmed with all the different meds, all it did was make things worse. They upsetted my stomach, or made me extremely tired. So durning my Senior year of high school, was spent doing a lot of sleeping.

For a while I was able to manage, especially the pains in my shoulder. The other pains bothered me, but I was able to push through them. Lately, the chronic pain has been a struggle. I get muscle pains all over; my legs, arms, back. I have instability in my shoulder so it often feels like it’s not sitting in its right place. And at times that can be so painful it’s debatating. Some times it gets very frustrating, but I’ve learned to use certain coping skills when I know I need them. On bad days I’ll try to surround myself with things I like. I’ll listen to my favorite music, go and be outside, etc. 

Two different surgeons have told me a 3rd surgery probably wouldn’t help, so I’ve had to accept that in all likelihood this will be a part of my life, for the rest of my life. I know a lot of my friends can relate; they as well have painful illnesses that help them understand. It’s nice being a community that constantly amazes and inspires me. So, because of that, I guess my relationship with chronic pain will continue on as “it’s complicated.”

 

 

A great piece by one of my close friends and fellow chronic illness warriors, Sarah! Follow her blog at chronicallywandering.wordpress.com 🙂

Why I Continue to Avoid TPN as a Young Gastroparesis and Generalized Dysmotility Patient

I’m about to hit my 3 year mark of being tube fed. I never would have imagined that I would be 21 and fed through a tube in my gut, but it isn’t my last choice as far as alternative nutrition options go.

I’ve been asked and offered many times to go (back) on TPN, or total parenteral nutrition, which is nutrition that goes straight into your veins. This option gives you full nutrition—protein, fats, vitamins, etc—and can be tailored to your exact needs.

Because my intestines and colon are delayed (they don’t process food or feeds at a “normal” rate), I don’t get in enough feeds to meet my calorie goals and I haven’t been able to gain back any weight. My BMI is considered extremely low and some of my doctors would really like me to go back on TPN. For those who don’t know much about TPN and for those who have never had to make the choices I have, I’m going to try to explain to you why I – as well as many of the other girls in the same situation—want to avoid TPN for as long as possible.

Although TPN is complete nutrition, and it probably sounds like a great option to many of you reading, it comes with many risks. TPN requires you to have a central line or a long term IV that goes deep into a large vein and then straight to your heart. These can get infected easily and lead to sepsis, which if not caught in time can be life threatening.

While tube feeding is much more natural and forces your GI tract to at least try to function, TPN leaves the GI tract to shut down completely. For someone with dysmotility (lack of movement), this can mean there is little to no chance of returning to tube feeding or eating if another treatment option becomes available after they start TPN.

TPN also puts you at a higher risk for glucose abnormalities and liver dysfunction. The damage to the liver can be so serious it can cause you to be unable to run TPN or even require a transplant if not caught in time. While on TPN, you are required to do weekly blood work, blood sugar monitoring, and weigh ins. TPN can also cause volume overload, metabolic bone disease, and reactions to lipids (fats) such as nausea, headache, back pain, sweating, and dizziness.

So there are many, many undesired side effects from TPN. But aside from side effects, TPN is scary because for those of us with gastroparesis and intestinal dysmotility, TPN is our last option. To go on TPN means to admit that our intestines are no longer functional enough even just for tube feeds. It means we can’t eat, we can’t tube feed, and we may not return to either.

Yes, some people go on TPN and come off of it able to tube feed or even eat again. Some people only use TPN to supplement their tube feeds or oral intake. Everyone’s case is different and TPN helps so many people live a more “normal” life because it does provide full nutrition; it can boost your energy and help you regain strength and muscle that is lost from malnutrition. TPN saves the lives of many starving patients with gastroparesis and generalized intestinal dysmotility.

That said, it doesn’t make it any less scary. Losing the ability to eat is one of the most confusing and complicated things you can imagine. Going from eating orally to being fed through a tube is one of the strangest and hardest adjustments I’ve had to make, but knowing I could lose the ability to feed even through a tube in my gut is even harder to accept.

TPN is a miracle for so many people, but it is also a nightmare for many of us. It’s what can help us live, but also what can put our lives at risk. I’ve been on TPN before, and I fight my body (and sometimes my doctors) every day not to go back to it. You can’t understand what it’s like to go through this until you’ve been the patient, but I hope that everyone—doctors, nurses, family member, friends—can try to understand how hard it is on the patient to make these decisions and all someone needs during that time is support and love.

Battling Gastroparesis: Happy Awareness Month!

In December of 2013 I was diagnosed with gastroparesis. Like majority of people, I had no idea what that was or what the diagnosis meant for my future.

When I got my diagnosis I was given minimal information about the condition, and because I didn’t know what it was back then, I didn’t know I wasn’t getting the full picture. I was told I had delayed movement in my stomach, it wasn’t emptying food like it should be. They told me gastroparesis is a chronic condition but since mine is what they call “idiopathic” or without findable cause, it was likely post-viral and would go away within a year or 18 months.

This discussion, my original gastroparesis diagnosis, lasted only minutes, and I was left to figure out most of it on my own. My parents and I left that hospital thinking I just had to get through this flare up and then it would hopefully go away for good. I had no idea on that day 4 years ago just how much gastroparesis was going to change my life.

IMG_6967
Some more info about GP– symptoms especially! And yes, that is my tube and a donut tubie pad!

Since my diagnosis in 2013, I have had countless tests and tried endless treatments, medications, diets, and therapies. Gastroparesis is extremely difficult to treat and there is no cure. In 2016 we found out that my dysmotility (movement disorder) had moved into my intestine and colon as well, so that became a major complication. Luckily at this point my parents and I had become experts on my conditions; after my original diagnosis we started to learn how to do our own research, we joined online support communities, and we went to see specialists who could give us more information about my conditions and prognoses as I was diagnosed with more conditions down the road.

The journey you go through when living with gastroparesis and generalized dysmotility is extremely taxing on both your body and mind; it’s exhausting and disappointing to try and try again and often get little to no relief. But, we have to keep trying in hopes that one day we will find the right treatment and hopefully a cure.

IMG_8844.JPG

As part of awareness month, I want to give you a glimpse at what it’s like going through testing and treatment with gastroparesis, so I’m going to list some of the tests, procedures, and treatments I’ve tried over my time with GP.

I was originally diagnosed with an Upper GI series, an endoscopy, and a 90 minute gastric emptying scan. Since then, I’ve had 3 more 4 hour emptying scans, multiple endoscopies, countless EKGs, lots of ultrasounds, endless x-rays, a breath test (SIBO), esophageal manometry, anal manometry, smart pill test, CT scans, MRIs, and so much more. And these are only the tests that have to do with GP—not my other conditions.

IMG_4002.jpg     IMG_7244.jpg

I’ve tried physical therapy, cognitive behavioral therapy, acupuncture, dry needling, chiropractors, and essential oils. I try keeping up with walking and core strength and I keep a positive mind set—no one can tell me I’m sick because I’m depressed! 😉 I’ve even read mindfulness books and watched documentaries on how to “heal your body,” although I wasn’t 100% sure about that one!

When I was able to eat, I’ve also tried a lot of diet adaptation. I was on the BRATS diet, low FODMAP diet, gluten free, dairy free, a gastroparesis diet, a liquid diet more than once, and I’ve been on both TPN and tube feeds. As of now I am completely dependent on my feeding tube for nutrition and my port for IV fluids daily.

IMG_7114.jpg

I stared with a picc line for TPN, then I had an NJ tube for a trial run with tube feeds before quickly deciding to have a GJ tube placed surgically in March of 2015. Since then, I’ve had my tube changed out over 26 times in IR due to either clogs, having it flipped into my stomach, or just needing a new tube (every 3-5 months). I also had a port a cath placed in August of 2016 and have that accessed 24/7 for fluids and nausea medication.

I won’t even list all of the medications I’ve tried because that’s just a ridiculous number and I don’t think you or I have the attention span for that. But you name a motility agent, a nausea med, a non FDA approved trial drug for GP, or pretty much anything used to control symptoms or promote motility or hunger and I’ve almost definitely either tried it or discussed it with my doctors and ruled it out as an option.

 

Over these (almost) four years I went from being able to manage my symptoms with a specialized diet and nausea medications to not being able to eat at all. Gastroparesis and generalized dysmotility are cruel illnesses, and paired with my genetic condition, Ehlers Danlos Syndrome, they’re relentless and grievous. My condition has progressed to a very serious level and I’ve tried most of the options available to me.

IMG_7313.PNG
Learning to embrace my medical devices 🙂 there should be no shame or shyness towards life saving devices like tubes and central lines!

Almost a year ago I saw my motility specialist at Cleveland Clinic, a man who is considered to be the best of the best, and he gave me three options. We’ve ruled it down to one option, but sadly insurance isn’t thrilled with it. 9 months later and we are still fighting for it. But we won’t give up. Gastroparesis won’t win this fight.

Happy Awareness Month! Keep your eyes out for more posts from me and others as we try to spread awareness and work our way towards a much needed cure!

Xoxo

R

 

My Feeding Tube Journey

This week is Feeding Tube Awareness Week. As part of that, I decided to write a blog post about my journey as a “tubie.”

I got my first feeding tube in March of 2015. I had been battling with gastroparesis for just over a year at that point and was in my first year of college at UVA. Although typically you try a feeding tube before you resort to TPN (total parenteral nutrition—IV nutrition), I had already been on TPN for three months before this. Because I was hospitalized in December right around final exams and was supposed to return to school away from home, my doctors had placed a picc line in December in hopes that it would be short term and it would allow me to remain at school. However, when that line got infected in March and TPN was not working well, we decided to go ahead with a feeding tube.

IMG_1197.jpg
Picc Line AND NJ tube! Ick!

My hospital does a short-term trial run with an NJ (nasojejunal) tube before placing a long term GJ (gastrojejunostomy) tube surgically. For me this meant a two hospital stays, one for the trial run during which I had my NJ tube, a tube placed through my nose and down past my stomach into my intestine where we hoped I could tolerate feeds. Having this tube placed was one of the most uncomfortable procedures I had experienced up to that point. I was not sedated or medicated at all aside from some lidocaine ointment and they stuck the tube down my nose, past my throat and into my esophagus while I was choking and gagging, my nose bleeding, tears streaming down my face, and they kept telling me to sip on water and swallow and just hold on it’ll be over soon. Some people tolerate it fine, especially people without gag refluxes, but for me it was miserable. I could hardly talk or swallow for the two days they made me keep it in. So shout out to my many friends who have multiple, long-term NJ tubes, I don’t know how you do it.

The second hospital stay was for my surgery. They decided to place a low profile, mickey GJ button tube. I was lucky that I still saw my pediatric doctors, because they use these tubes on children and I am small enough to fit into them. Often, adults get long, dangling tubes called PEGJ tubes. My surgery was able to be done laparoscopically, but they placed the wrong size tube so the pain was much more than anticipated and we stayed in the hospital for a five days to try to manage that. I had to keep that tube in for 6 weeks for the tract to heal before switching it out for the right size and finally getting some relief.

IMG_4536.JPG
Tubie– this is about one year post op. I actually continued to lose weight for awhile.

I stayed in school for that semester anticipating that my feeding tube would improve my quality of life; in many ways, it did. However, my gastroparesis continued to progress and I had to make the decision to take time off from UVA and stay home the next fall. Although my feeds did help me gain some of my strength back, I didn’t end up tolerating them as well as we had hoped. It’s been quite a journey.

For a while I was able to get in almost 1,200 calories by tube every night. Because of my chronic fatigue and the amount of time I spend in bed, that was almost enough to get me by and I was still able to take in a few hundred calories by mouth. Over the first year or so, my tube feeding rate slowed down by about 40% and it took me much longer to get in what I needed and I often wasn’t able to finish feeds over night. But still, I was able to supplement some of what I needed by eating a few of my “safe” foods—potatoes, squash, simple carbs.

Other parts of tube life include daily maintenance like keeping drainage clean, flushing the tube every couple of hours so it doesn’t clog, and changing tubie pads or gauze. I deal with bloating, pain, and changes in how my tube has affected my self confidence and body image as well as adapting to how little control I have over what goes into my body.

IMG_4963.jpg
This is where I get my tube swapped out!

I also have to get my tube changed out every 3-6 months or every time it flips into my stomach or clogs. I can tell my tube has flipped into my stomach when my medications and feeds make me sick. When this happens, I have to schedule a time to get my tube fixed. When it is clogged, I have to call UVA and ask them to order a new tube. Sometimes it takes up to a week for them to get a new one and I go that long without receiving my feeds. (That happens to be the case this week!) I don’t get sedated for these tube swaps– some doctors use sedation, others don’t, mine just happens to be one who doesn’t. I get them done in radiology under imaging. They know me pretty well down there. It is an uncomfortable procedure but usually only takes between 30-60 minutes.

I’m about to hit my two year mark with my feeding tube and I now only tolerate a rate of 50ml an hour. That is almost half of what my goal rate was when I got my tube. My original diagnosis was gastroparesis, or paralysis of the stomach, but now my diagnosis has changed to Digestive Tract Paralysis (DTP) which means my dysmotility has moved into my lower GI system which makes tube feeding much more difficult. My colon is now greatly affected and my intestines are also delayed.

IMG_7536.jpg
This is the smart pill– a pill I swallowed and it tracked the movements of my GI tract and told us how each part worked (or didn’t 😉 ).

I recently switched formulas to a blended food formula in hopes that I will tolerate it better and it will make my body feel more human-like than my old formula that was full of preservatives and sugar. Sadly, I am not able to get in enough formula to gain weight. At this time, I also do not have any “safe foods” that I can intake orally to use to supplement my tube feeding. Because of this, my doctors talk about alternative options that could be in my future.

IMG_7313.PNG
My tube and my port peeking through!

My tube saves my life every day.  I rely on my tube and my port for 100% of my nutrition and hydration now. I can’t say I’m always thrilled about tube life, but I wouldn’t be here without it and I am so thankful for it. If you have any questions please don’t hesitate to ask!

Cleveland Update!

Here’s what happened in Cleveland!

On Tuesday the 15th we were in Cleveland to see Dr. Cline at Cleveland Clinic and follow up on my smart pill test. For those who don’t know, the smart pill is literally a pill that you swallow and it records pH, temperature, and pressure throughout the GI tract as you move it through over the course of 5 days. This is a motility test (movement test) looking to see how well your GI system is functioning.

Well, Dr. Cline explained to us pretty much what we already expected to hear: my whole GI tract is now being affected by dysmotility. This means none of it is moving like it should.

Specifically, my stomach took 27 hours to empty (it should be less than 4) and my colon did not empty in the time that the pill was active (120 hours—it should empty in less than 48 for someone my age or 59 for the test’s basic criteria). We are not sure when exactly the pill moved out fully (hopefully it did!).

The doctor said that this explains why I don’t tolerate my tube feedings well and why I am unable to gain weight at this point. However, due to some elevated liver function tests, I’m unable to start IV nutrition (TPN) right now, but honestly that’s okay with me. I’ve been on TPN in the past and although it is an important option to have and is saving the lives of many of my friends with the same conditions (Motility disorders or Digestive Tract Paralysis) as me, I’m not ready to go back on it at this time.

Our second option was a whole intestinal transplant. They would remove my stomach, intestines, and colon and replace with someone else’s stomach and intestine. The colon would not be replaced. However, this is not a guaranteed fix and with my connective tissue disorder there’s a good chance it wouldn’t heal correctly or my body would break down those organs with time, too. It’s not a good option for me at this time and is left at the bottom of my list, which leaves me with only one option for treatment.

For now, we are trying to get a new treatment approved by insurance. This is IV immunoglobulin therapy. Essentially we would be trying to reboot my autoimmune system and hoping that my body would stop fighting itself and in that process my GI tract would speed up and start working better. This would most likely be a monthly treatment. It is a very expensive treatment and can be hard to get approved, but working with multiple specialists, we are hopeful!

I also plan to look into some more natural and homeopathic treatment options like natural antibiotics and supplements, acupuncture for pain, and multiple other things that have been suggested by all of you!

I am trying my best to find a better treatment option and work toward a healthier self. Thanks for reading and thank you for all of your thoughts, kind words, and love that you continue to show me. It truly makes a world of a difference!