Living with Gastroparesis

I really had to push myself yesterday and make myself climb. My husband and I used to boulder and outdoor sport climb all the time, before I got sick. In fact, it was I who got him into it at all. I started outdoor climbing way back in 2002 and have loved it ever since. But with this infection, I’m just so stinking tired all the time that I really don’t have any motivation to get up at all. I finally decided to push myself out the door to climb and it actually went fairly well.

I was able to bust through all the V1s without any problem whatsoever. I think next time I will attempt harder routes to see where my limit is. Yes, that is me with my feeding backpack on. I use a Zevex Infinity and I LOVE it. It works in any position with the bag above, below or under the pump (so long as there is no air in the feeding bag). The bag and pump have allowed me to act as a completely normal person; going out to movies, exercising, on vacations, whatever I want. Only thing that stops me now are these darn infections and the massive fatigue that seems to accompany them. I’ve almost finished my second round of antibiotics, so I guess we’ll see what happens with it.

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After a long week of waiting, and a painful weekend – they finally were able to identify the strain of Staph and prescribe antibiotics. Hopefully it clears up soon and I’ll be able to stop needing liquid oxycodone just to make it through the night. I’m just thankful it isn’t MRSA and that antibiotics will take care of my infection.

My previous PCP had me on birth control pills to regulate my estrogen levels. I was unable to maintain a healthy level of estrogen and when that happens – you are likely to enter an early phase of osteoporosis. Not something you want to deal with at the age of 26. So I agreed to take them even though I had horrible experiences with them previously. I was put on them the year before for the same reason, shortly after my abdominal myomectomy, so I knew sort of what to expect. I suffer horrible nightsweats while on BC pills and this of course happened again on my new pill. I dealt with it. But a few months in, I began to experience other troubling and uncomfortable symptoms. I looked up the medication online and searched through forums to see if others were experiencing the same thing.

Now I understand that forums are not always the place to go for medical advice, but after years of being ignored by doctors – you get to the point of trying anything. When many of the women expressed the same symptoms as the ones I began developing, I decided to see what happens when I went off the pill. A week and many migraines later, I am actually starting to feel like myself again. I might even try running this week, or at least taking a nice long walk (if it isn’t raining of course, which might be too much to ask of Seattle).

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This past weekend I found increasing drainage coming from my stoma. I thought nothing much of it and figured it was just from irritation brought on by the new activity of my Berner. My Bernese Mountain Dog puppy, Ellie has taken a liking to my stoma and enjoys pouncing all over it. Of course this causes pain and drainage, and I figured there was no other deeper problem. However, the drainage continued and the stoma site began to smell differently than it had before. I contacted my gastroenterologist and he had me come in the next business day. He cultured it and yes, another staph infection. They are still unsure as to which antibiotic sensitivity it has so I have not been able to start antibiotics.

I had a staph infection of my stoma almost a month ago today. I guess when you have a rather large tube hanging out of your body, you are bound to get infections. Other than increased fatigue and pain (which I take care of with oxycodone), I can deal with this new normal in my life. I can still get out and climb or shop or take walks, so I’m not complaining!

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I am normally a daytime feeder, as I feel it is more natural and it lets me drain/decompress at night. A few nights back I had my Farrell Valve hooked up to my J-tube for a night of decompression and drainage. I have found the J-tube to be much more secure than the NJ tube ever was so when I woke up to a mess the next morning, I was more than surprised. Somehow I had rolled over on to my connector tube, pinching it shut and forcing the Farrell Valve to come unplugged. Since I had been draining all night – the clamp on my tube was open to allow for that process to happen. Being that the clamp was open and the Farrell Valve disconnected, intestinal fluid gushed out on to my bed like an erupting volcano. I realized quickly what had happened and rushed to close the clamp. My fast reaction time was no match for the current flowing through my body, and my bed and sheets will forever show the signs of this most disgusting battle.

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