Living with Gastroparesis

I’m still fighting migraines. They are quite debilitating when they hit, which is usually in the early afternoon or evening. I haven’t yet figured out why this is. It doesn’t seem to coincide with feeding rates, amounts or times or with any type of food I manage to get in orally. All I do know is that when it hits, I’m usually down for the rest of the day/night with pain, nausea and a stupidly high sensitivity to smell.

I started taking Maxalt MLT which might be chased with 5mL of oxycodone or Excedrin Migraine. I try to save these drugs for the evening and get done what errands I need, during the early morning and afternoon. While I generally feel normal after I take these medications, I realize the next day that 1. I experience some amnesia and 2. Whatever I do attempt to do, I do poorly (like trimming my poor puppy’s nails). Finding the reason for these migraines and being able to stop them from happening (at least as frequently as they have been – daily) is my goal.

I’m scheduled to meet with Dr. Justin Stahl this week after a head CT scan to investigate. When your migraines become more intense and more frequent, doctors and of course the patient get concerned. I’ve suffered migraines since I was a kid but they never occurred more than one or two times a month. That to me, is manageable. Having them every day, around the same time, and needing to plan activities around the migraines is not acceptable. Hopefully after this week is over, I’ll have a better idea of what all is happening.

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There were some interested in how a tube feed gets set up and how everything works together. I have made a simple video of how I start a tube feed from beginning to end. I hope it is helpful.

I am doing supplemental feedings. This means that I get some of my nutrition orally. I typically take in 1200 calories over night and eat what I can during the day. This is limited to the GP diet and often consists of carbohydrates such as pasta, rice and bread (toast). Absolutely nothing fried, fatty or high in fiber (vegetables and most fruits). I find it works best to keep to the bland diet. Sometimes there are things that I eat and pay for later. I know what they are and know well in advance that eating it will cause issues. It is just worth it at times to eat something I don’t normally get to eat (like chocolate covered strawberries!).

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Also known as Ulimorelin, this drug Tranzyme Pharma (TZP) has shown extremely positive results in controlled testing of diabetic gastroparesis. It has shown to be a potent prokinetic drug, significantly reducing nausea and vomiting while promoting gastric emptying. The furthest testing phase is seen with the IV delivered drug (TZP-101) but the oral (TZP-102) trials are not far behind. If this drug does what studies show it to be doing, it would be a very exciting bit of information for so many of us plagued by the disease of gastroparesis (idiopathic or otherwise) and the symptoms it produces.

For more information on these drugs please visit the following sites,
Tranzyme Pharma’s Clinical Results on Ulimorelin
Tranzyme Pharma Press Release (June 29, 2010)

UPDATED INFORMATION
Positive Reports for TZP102 and Diabetic Gastroparesis

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I have been fighting with a migraine for the past few weeks, taking excedrin migraine every day. I think I topped out at 10 and still continued to have a migraine. It progressively got worse each day. Only at night was it tolerable when I was able to sleep it off, but last night, I was given no such gift. I counted down the hours until my doctor’s office opened, to see what they could do to help.

When I got in around 10am, I was given an injection of Toradol and waited around for another 15-20 minutes to make sure it 1. worked and 2. I didn’t have any adverse side effects. 20 minutes came and went with little to no relief from the injection. I was then informed that it was likely due to my low body fat, in that it just didn’t absorb enough. The only other option was oral medication by prescription for the same drug that was injected.

I found myself stuck between a rock and a hard place given that I have absorption issues with my stomach too. I’ve taken one dose of the prescription migraine medicine and I’m still deciding on whether it is working or not. It could have gone away on its own just as well. Time will tell and while I wait, I hope that a completely sleepless night will keep me tired enough to sleep through tonight. I have things I want to do tomorrow and I’ll need the energy!

I have found that with a rise in temperature, my symptoms increase accordingly (nausea, migraines, stomach aches, etc.). I have had issues trying to feed without feeling absolutely miserable and sick. I hide away in the darkest parts of my house in hopes of escaping the heat pounding on the walls of my home. We’ve even gone out to the movies just to be in a place with AC. It helps a little but the only thing that keeps me going is the thought of it cooling down, as forecasted. I can’t wait for it to be nice outside and to have the opportunity to properly feed.

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I’ve been fighting a bit with granulation tissue since my infection cleared up. The granulation tissue has been draining something nasty, bleeds a bit but surprisingly doesn’t hurt. It is growing more inside than outside which has made it difficult to treat. My doctor has taken silver nitrate sticks to burn off, or cauterize, the growing tissue. It is a painless procedure but does cause soreness a few hours later. The tissue will die and form a scab that will later just fall off.

The unusually high drainage from the granulation tissue keeps the wound moist. Perhaps that is the reason it has been continually infected. This will be something I’ll need to watch.

UPDATE (8/26/10)

We had great success with keeping the granulation tissue from advancing further in my system. In fact, the Nitrate Sticks worked so well (and painlessly), I have yet to find any remaining granulation tissue. It isn’t a cure, and will most likely come back despite my best efforts, but for now – the pain, swelling and drainage has stopped and I haven’t had an infection since =)

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