Living with Gastroparesis

If we could give every individual the right amount of nourishment and exercise, not too little and not too much, we would have found the safewest way to health. — Hippocrates

Lately I have been struggling with balancing the right amount of exercise to the right amount of rest. So often when one falls ill, the common remedy is fluids and rest. But what if you feel ill most days? Surely you shouldn’t be spending your days doing nothing but resting. You must get out and do some form of activity and socializing, but how much is too much? At what point are you doing more harm than good? I am the type of person who will do more activities than less, working through pain just to feel somewhat normal, to take my mind off of the diseases that seem to follow and interfere in every part of my life. My surgeon says to work until I feel pain and that pain is a good indicator on how well your body is healing.

What if you don’t feel pain like everyone else? I’ve been told by a few doctors and surgeons that my pain tolerance is quite high, high enough that my mind isn’t processing it but my body is aching. Where do I draw the line there? I guess I’ll just need to wait the typical 6 weeks post-op period, before I can engage in activities such as rock climbing and running. I think once I can participate in these stress reliever activities, my mind won’t be so jumbled and I might actually learn to relax again.

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I just got back from my post-op/consultation appointment with the surgeon who did my emergency exploratory laparatomy. She is wonderful. Didn’t get to talk to her much when I was in the hospital but she is just about the nicest surgeon I’ve ever met! I added her to the list of doctors, if anyone is looking for a caring, warm and sincere general surgeon, Dr. Lily Chang.

I found out my surgery lasted 2 hours. I was told that it is rare to survive the type of surgery I had. Perforation of the bowel is pretty serious along with the peritonitis I developed in the few moments between procedures. They were extremely relieved and happy with my recovery so far and how quickly I turned around. I’m not completely free of complications but, she said the bulk of my recovery is over.

I questioned her about switching out tubes for new tubes or buttons. She told me that a tube switch would be ok to do in the next few weeks as long as it is to the same size or a size smaller, tube. It’d be done endoscopically like my last one, by the same GI surgeon. I asked if that would push back the recovery time needed for a button placement and she said it would not. So the following month I can get my button. It was all very good news. I was afraid I’d have to keep this ugly, stupid, useless tube for the rest of my tube feeding time. Not so!

I’m going in to talk to my GI about what my surgeon said, and to see if I could possibly schedule the procedure for a tube switch for next month. Just so I have something to work towards and so I don’t end up doing it last minute. Hopefully it all goes as well there as it did with my surgeon.

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Medicine is a science of uncertainty and an art of probability. — William Osler

I apologize for not updating here, as I should, but for once I have an excuse other than pure laziness. As I mentioned briefly in the tubes section of experiences, I was approved and waiting for the outpatient procedure that would change my PEJ tube to a PEJ button. Through this procedure, I’d have a bit more freedom and experience less infections, rancid aromas and also be down one puppy chew toy. I patiently, um – as patiently as Kirby can be, waited the 2 months after original PEJ placement so that I may have my button. The button represented so many things such as the freedom previously mentioned, return to a new state of normalcy, and even a bit of beauty (no tube hanging from the body could be considered its own form of beauty).

When I got the greenlight for a button procedure, I pushed and pushed to get the procedure scheduled for the day before yesterday. I saw my doctor on Thursday (6/3/10) and was able to get an appointment for 9am the morning of June 8th. I couldn’t be more excited to finally have a date. Something solid I could work with and towards. I went out and did my hospital pajama outfit shopping routine and my OCD housecleaning. I knew I would only be gone for a day with a slight possibility of an overnight stay, but, it kept me busy – and you just never know what could happen. Well the unknown quickly became the known on the morning of the 8th in June.

I left for the hospital for a button procedure with the aid of endoscopy, at 7:45am. I was prepped and ready to go with sedatives administered at 9:30am. Even though I came in with a migraine that I had been fighting for the past few days – I knocked right out. I woke up to my husband and doctors I didn’t know. After 10 previous endoscopies, I knew this was not normal. Usually the anesthesia wears off before I see anyone and if I see any doctors, it is going to be my gastroenterologist who preforms the procedure. Confused and still groggy I was told by my husband that they were going to be rushing me in for another surgery. There were complications and the doctors were arguing back and forth about whether there would be time for ct scans and x-rays as well as pain medications like epidurals and injections (yes, it was that bad). No time for anything – into the OR I went for complications that still didn’t get explained to me. There just wasn’t time for me to fully wake up to comprehend it all.

I don’t know how long the second procedure was but I did make it out safely and with my whole intestine in tact.
[flickr-gallery mode=”tag” tags=”emergency”]

How did this all happen? What was the process? Well, to remove the original tube – they had to go through my gut endoscopically and cut off the internal bumper. Then the tube is free to be pulled out from the outside. While the first tube healed, it created almost like a vessel – a connection of tissue, if you will, between the abdominal wall and the intestine. This kept the intestine close to the wall and stable. When the first tube was removed and the new button put in, refer to this picture of the button tube, the force from pushing it through caused that tissue to break and for the intestine to pull away from the abdominal wall. This is what they meant when they kept telling me, “we lost your small intestine.”

Once the intestine was lost from view – with the hole still very much open, everything from my intestine was leaking out into my abdominal cavity quickly filling it to the point of near organ failure, with fluid, air and other types of matter. Because of the rate at which it was leaking, there was no time for CT scans, X-Rays or even an epidural, all of which the doctors were fighting to get. I was lucky not to lose my intestine during the process. During the short moments between one procedure and the next, I developed peritonitis. Another major complication to throw onto the pile. Sometime during the procedure an issue came up regarding my pacemaker. Should it stay on or off during the surgery? Cauterizers are on the no-no list of things to hang around with while having a gastric neurostimulator implanted. The doctors, again, felt there was no time to turn it off and continued with the surgery. Of course, the worst situation did happen and they cauterized right through one of the leads in my stomach. Improvising, they used some sort of electrical gel to maintain the connection and my wonderful gastroenterologist, who insisted on sitting in on the surgery, made sure it was in full working order.

I don’t know how long I was in the OR for or how long it took for me to leave the recovery room but I do know that I was back into a hospital room by 6pm. It was a very long and complicated day. I scared a lot of friends and family. I stayed in the hospital for 5 days. My stomach went from one extreme to the other:

But overall, I’m doing OK. Slowly recovering and hoping to soon replace this ugly surgical tube (with no bumpers, clamp or decent plug – held in place with stitches!) with my old tube while I start the waiting game for another chance at a button. C’mon Dr. Patterson – you can do it, I know you can!

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Have courage for the great sorrows of life, and patience for the small ones. When you have laboriously accomplished your daily tasks, go to sleep in peace. God is awake.  – Victor Hugo

Lately I have been plagued with extreme fatigue. After listening to others with gastroparesis, I notice a common symptom of fatigue. All of us, more or less, may suffer from varying levels of fatigue. It is my experience that this fatigue is exaggerated with any kind of stress, illness or even just normal activity. I’m currently fighting an infection of my stoma and in doing so, have been completely drained of all my energy. I don’t even want to get up in the morning, but the morning cry of my new puppy forces me out of bed. I suppose this is a good thing, but it doesn’t feel all that great. I can’t tell if my body is just being lazy after the many months of being sick, or it truly is using every resource to build my body back to a healthy status. It isn’t as if I don’t get enough sleep. It isn’t straight up sleep deprivation that’s causing it. I get nearly 12 hours every night with the help of my sleeping medications (lorazepam and ambien combo). I guess it is yet another subject to bring up with my doctor! He really is a saint for having to put up with me. I am not an easy patient!

Never hurry. Take plenty of exercise. Always be cheerful. Take all the sleep you need. You may expect to be well. — James Freeman Clarke

I guess this is my complaining post. This past weekend was not a good weekend for me, physically or emotionally. I had a difficult time accepting my new normal, I guess you could say. Normal meaning obeying a restricted diet and getting the rest of my nutrition via jejunostomy tube. My husband wanted to go out and try new restaurants this past weekend which was difficult for me, because either I didn’t feel like eating or I couldn’t eat what it is they served (greasy, fatty, whatnot). I wanted to give up and give in to the great food at the restaurants we visited. Not being able to enjoy what I once was able to, made me feel so depressed. Eating may seem like a small part of our day but when you can no longer participate as you once had, you realize what a big part of the day it really is, and how important it is to not only your physical wellbeing but your emotional wellbeing. In order to pull myself out of, what I could recognize as a downward spiral of negative emotions, I had to remember all that I do have – and how it is often more than some and to be thankful for it.

While my health isn’t what it could be, it is stable. I’m thankful for that. I have one heck of a husband who has helped me through everything. Unfortunately I have been dealing with these health issues for the entirety of our relationship (married and not), but he has handled it wonderfully. My family and even extended family has been more than supportive and I have been blessed to find the most fantastic doctors and nurses and hospital staff in the world.

Having good doctors really makes a huge difference. For years I stumbled around looking for doctors who would listen to me and believe me. Over the years I learned to self diagnose and figure out tests that should be done so I could demand whatever random doctor I was seeing at the time, to do them. Not anymore though. It is such a relief and load of stress removed from my life, to have a team of doctors and nurses fighting the fights I used to fight alone. Because of all the years of physician neglect, I have become, like previously mentioned, a difficult patient. My attitude or behavior has not altered the treatment I have received, and for this, again, I am thankful. So many things to be thankful for, I cannot possibly have right to complain.

The way to keep your health is to eat what you don’t want, drink what you don’t like, and do what you’d rather not. — Mark Twain

Sometimes you just need to suck it up and move on in the best way you know how.

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