Living with Gastroparesis

Last week was not my week. I was without my pain medications due to a huge mis-communication between my pcp and her nurses. By the time I noticed this error in communication, it was too late; she was gone, left for vacation. Long story short, It took me all week to get my pain medications and while waiting, I had to check in to the ER two times that week for help. The pain I am experiencing is something different. It is unlike my normal GP pain. It is sharp and crampy along the right side of my body between my gastric neurostimulator and pelvic bone. I was also suffering bloody bowel movements. Even with these alarming symptoms, the ER gave me medication and sent me home. My husband and I came to the conclusion that the ER is no place for a person like me. They have no clue when it comes to anything that requires any extra thought process. Unfortunately my gastroenterologist was out of the office so I had to wait a few more days for him to return before I could make an emergency appointment to see him.

When I got in to see him, he agreed that a colonoscopy would be most appropriate, given the symptoms. He took an x-ray and based off that he also wanted to do an endoscopy. He also wanted to try a new treatment of botox injections into the pylorus valve of the stomach. It paralyzes the valve allowing food to exit the stomach more freely, thereby allowing the stomach to empty at a more appropriate time. I am not sure how I feel about the botox treatment. I hear that it can cause dumping syndrome which is by far worse than gastroparesis. It could also just not work. I think more research is needed to make a decision, but I don’t really have much time. My appointment for the procedures is in 2 days (8.23.11). It will be preformed under general anesthesia. At least I won’t be waking up in the middle of this scope, like scopes of the past. A small reassurance, but I’ll take it.

This is a big week for G-Pact and Oley. It is the week where all of the members take time to spread awareness through media, meetings or even casual conversations. We are always trying to spread awareness of DTP (Digestive Tract Paralysis – a term that covers all digestive disorders that slow down motility) but this is the week where we really pick it up. Facebook is the best place to find information regarding DTP. Awareness videos are reposted, people are directed to sites where they can learn more about DTP and how they may be able to help make a difference in the life of someone with DTP.

I’ve made profile pictures for people to use to help spread awareness. All you’d need to do is tag yourself in these photos, or download them, and place them as your profile picture for the duration of DTP Awareness Week (August 19th – 27th). If anyone has questions about anything GP or DTP, send them my way =) Here are some of what I made!

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Well, I’ve been on TPN for about 2 months now. I have to say, it is turning out to be a lot easier on my body than tube feeding was. I find it a lot easier to keep up on the schedule. With tube feeding I would adjust it to how I was feeling and more often than not, I would get less calories than I should have been getting. This was mostly due to my recent diagnosis of CIIP (chronic idiopathic intestinal pseudo-obstruction). I have written up quite a bit of information on tube feeding and my experiences with it but since I have been on TPN, I thought I would switch over and give out some information on that.

TPN stands for Total Parenteral Nutrition. It is basically food broken down into its basic elemental form and is delivered through a vein. I did have it going through a vein in my upper arm via PICC but due to my wishful thinking lifestyle and length of time needing TPN, it was not a great option. So last month they placed a portacath under my skin, sutured the port to my chest wall and tunneled a catheter from the port into a vein in my neck and down to my Superior Vena Cava (SVC). I was let go that day.

Not going to lie to anyone, the procedure hurt and recovery time was long. The whole site was swollen a good 3 weeks post-op. But now, when it is reaccessed during a needle and dressing change, it doesn’t hurt barely at all. Long as the person doing it knows what they are doing !

Anyway, this weekend we are taking a pre-emptive approach to my pain, discomfort, nausea and fatigue via medication. I’m taking my medicine before things get bad in hopes to catch it early enough to keep me out of the ER. I now have IV zofran which so far has proven to be helpful. Victor has noticed a change for the better. Don’t know why – but hey, I’ll take it. I also had the energy to start and finish my TPN pages. Please feel free to read through them. The Scrub video can be found there! New photo section up as well.

>Living with TPN<

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I don’t have much energy to sit and explain everything at the moment but I’ll summarize. I was admitted after spending some time in the ER on the 25th of December (a CT scan showing obstructions kept me there and let to a new diagnosis of CIP) and was not discharged until the 31st, under the orders of my Gastroenterologist. I had a PICC placed and am now on TPN full-time until my doctors and homecare nurses can get me settled enough to re-introduce tube feeds (slooooowly).

I’ll blog the experience a little later when I can sit at the computer for as long as it will take to make the post. Hope everyone had a painfree and happy new year, celebrated with friends and family.

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Our lives are not determined by what happens to us but by how we react to what happens, not by what life brings to us, but by the attitude we bring to life. A positive attitude causes a chain reaction of positive thoughts, events, and outcomes. It is a catalyst, a spark that creates extraordinary results.

It has nearly been 1 full year of tube feeding, which to me marks the first real time I was truly diagnosed with gastroparesis. Medications were tried, psychotherapy was attempted with many failures but the day my first Nasojejunal Feed Tube was placed marked the first day of real treatment and real results. Here I am, one year later. Weight stable, energy much higher, new family (of the canine family) additions, new house, and a permanent cute low-profile jejunal feeding tube. It has been a long battle with many setbacks, emergency surgeries, infections and illness but here I am…trotting along the path that has been set before me doing what I can, when I can, where I can and fighting for everything I want in life.

For some people things come easy but for the rest of us – we fight for it, and we fight hard. Pushing for every bit of happiness we can experience and for those sweet little moments of joy we hold on to for the rest of our lives as if they were little bits of power that gives us the energy to keep going, to keep pushing and to keep fighting for more little moments of joy and bits of happiness. No one should ever give up fighting and always cherish even the smallest accomplishment. Whether it is being able to take care of the morning chores, romp around with your favorite loved animal, read a book in a favorite chair, watch a favorite show with a loved one or embrace your children – those are those little moments that you must cherish and always remember. Use them to keep you going and work to always get them back. It is the simple things in life that have the most meaning and the things we remember the most.

I made a simple video of my journey with gastroparesis over the past year. I have placed it here but it will be permanently placed in the Background section.

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This weekend was a big one and after feeling really down the past few days after struggling with gynecologists and migraines and depression, I really just needed to get over myself and just get out. So I packed the weekend full of activities. Perhaps I overdid it but, that is still yet to be determined.

First we started out Saturday with a 2 hour hike down to a lake with two of our friends and our Bernese Mountain Dog. She almost went swimming, as you can see. By the time we had reached the bottom, Mary and I were frozen solid and quite ready for our 2 hour trip back up. At least it wasn’t raining and the skies were clear. The paths there were interesting. Some were marked with logs pack filled with smooth stones. This sparked much conversation as to how the logs got there through so much thick forest, why they’d need to build such a path and why smooth stones in a place where it frequently rains? I guess by the end of those 4 hours we had run out of things to talk about. But the trees there were amazing, so tall, old and full of all sorts of life. Very beautiful.  Even though I’m totally down for another hike like the one we made to Barclay Lake, because I was nearly frozen solid at the end signals to me the end of my hiking season as well as anyone who frequenly hikes with me. And yes, I did it feeding the whole time – holding extra items in my feeding backpack, even – like treats for my sweet dog

The second trip we took was out to the mall Sunday morning. Ellie, my dog, got to come too. We walked the entirety of Bellevue Square Mall and then raced home to make it in time for any possible guests that might be joining us for the Magnuson Off-leash Park. But no one came =( That’s OK. We enjoyed ourselves alone, walking the long trails of the park with Ellie off leash. It was wonderful, so big and flat with so much free room for them to run and roam and move. At the end of the trail was the beach where the dogs had access to run, jump and play in as much water as they could swim in. Everyone would line up with their tennis ball snapper things and just launch their balls into the water and all at once a tidal wave of dogs would go rolling through the water frantically trying to be the first super dog to find “their” ball. Some fights would break out but that’s expected; it is a very serious and stressful sport. Ellie wasn’t quite ready for that level of competition =)

And yes – all done with backpack and feeding pump. You can be as active as your doctor allows (of course nutrition might not be your only problem so always check with them before attempting something more strenuous.) Just being outside and doing things will help you feel better, if not physically, emotionally. Good luck to everyone out there struggling, there is hope. I’ll update some other news shortly tomorrow. Always feel free to browse this site as the menu has dropdowns with even more information.

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