Living with Gastroparesis

Going to do a quick update and sort of list out things that have changed since I last updated and/or am too lazy to scroll through to find the other updates Oct: Ileostomy (complete), January, February, April I was septic with a mixture of line and blood infections (one from a portacath placement of a contaminated port, a UTI and pneumonia because “I’m special…” or that’s what my doctors say). March I was inpatient for another issue. February and May I had port replacement surgeries. April I spent the month trying to heal the open wound the contaminated port left me with, because it was too risky to close it all the way. And why is it that I always get questioned (no really, someone asked this – “did you recently drink something warm or scratch at your incision?” at the ER when I came in from that surgery in which the contaminated port was placed… *face palm* It wasn’t even accessed yet – that’s how old that port was…) about ridiculously high temperatures (no higher than those our doctors tell us to go in for, when we have central lines), tachycardia and dehydration (and hello pain?). I made it through most of the summer without an admission, minus weekly iron infusions that we now have figured aren’t working, not because there is a lack of iron but a lack of blood product from my bones. Then there was August. Just shy of fall… Bacteria from my large intestine decided to hitch a ride into my blood stream causing another case of sepsis with this one being just that much worse than the previous. Every time I make it to the hospital via ambulance from my ER, my hospitalist (who I have a relationship with now since that whole near death thing of ’11) always comments, “you know, if you didn’t come in at the time you did, you wouldn’t be here…” Nooot something you tell a sick person when they are still trying to get OUT of the hospital. Save those gems for story time later.

It was during that admission I had my gastric neurostimulator removed. I questioned myself about whether or not to let the public know about that last part. I am still a major supporter of the device and think that above all else, it is by far one of the best things to try anyway. But after a few years with mine, it had to be replaced once (the battery – very superficial, never overnight admit) and then I lost so much weight from one of the previous septic attacks, I was struggling to hold what weight I still had, making the pacer stick out like a sore thumb. While still septic, I left them no choice but to remove the battery so as to not give my body another source of infection. They would not be able to go in and get the leads until I was well enough. Well, I apparently was “well enough” on the 2nd of October. It is during that operation where they removed the leads (the actual difficult part of placement/removal/replacement of that neurostimulator system) by of course opening my abdomen and then they also did a pyloroplasty. That just means they went into my pylorus and made that hole bigger in hopes that things wouldn’t get so stuck in my stomach and drain a little better via gravity. It was already shown on an EGD earlier this year that I now have 0 motility. That’s 0, 0% or complete lack of stomach motility. So, my GI says, no more need to test that any further. Guess that’s a good thing about it! One less test to worry about!

In any case, I’m home now. Was discharged (too early imo) Tuesday and while I continue to battle pain (abdominal surgeries are the worst because there really isn’t anything you CAN do without somehow involving the muscles in your abdomen. The same muscles they either pulled apart, sliced through or expanded make sitting up, laying down, moving, breathing, oh my gosh hiccuping!, or otherwise doing ANYTHING without an enormous amount of pain. No problem. Even with all of our fantastic malnutrition issues, we still manage to heal, even if it is over 2x longer than anyone else.

New things for me – nothing much but working on trying to update some pages (and also create them, don’t hate me for being behind!) and work on and finish the new video. It isn’t like the others. It isn’t really meant for awareness. I think I nailed that one pretty good in like v5 or something. This one is meant to be to those who do know me to some extent in the present or for some period or chunk of my life. I made it to show all of me, my life, the things they don’t see when they see me in the hospital, an office visit or even my friends who don’t know everything. Needless to say, it is quite an ambitious endeavor but I will kick it around until it is done or I am bored.

Thank you for all your prayers, words of encouragement and messages even when sometimes, I might not tell you something is wrong. I read them all, even if I don’t always respond. The situation doesn’t always allow me to.

I’ll be updating this blog shortly as many things have happened and I’m still trying to wrap my head around them and find doctors who are qualified to make the correct diagnosis that may explain why all my organ systems seem to be affected. For now, I have updated the GP INFO page with a new introduction to the life someone with GP/CIP or any digestive disorder lives with day-to-day. It is lengthy but well worth the read if you are truly curious. It will help you try to understand but we all know that until it happens to you, complete understanding will never be possible. We, as a group, would not wish that on our worst enemy. I hope everyone is having good tummy days and are with doctors who really do care for them and do everything in their power to make them well, even if it means sending them to someone else for proper diagnosis as it might be beyond their scope of knowledge and understanding.

Good luck to all of you. I think of you often and you are all in my hearts and keep me going. You really are my inspiration for putting my story out to the world for it is by these words, patients become stronger and wiser in their disease, a disease that is so very much misunderstood and often underestimated and even mocked. We have to ban together to make ourselves heard and this is one way I think it can be done. Sharing stories helps us find ways to help ourselves in ways we never thought of before. Continue to read, research, share and post so newly diagnosed or those diagnosed for years but had no one to talk to can find peace in the knowledge that they aren’t crazy; this disease and those it cause are real and sometimes it is us, the patients, that are the only ways to help progress in the positive direction in terms of a cure or even treatment of symptoms. I hope you are all doing well and keeping your tummy troubles at bay as the summer quickly approaches. I hope you can enjoy it with family and friends without the extra burden of this and other diseases. I love you all and think of you often. Keep fighting. Our battle has not yet been won.

I have other news and a new diagnosis, one that some who have friended me on Facebook already know of, but I will explain it in greater detail here and what it all means when it isn’t so late. For now I will leave with a picture. Good night everyone. Rest well! <3

She knew I needed her most – even if I was completely knocked out after three days of no sleep thanks to the Ritalin they made me take after 9:00pm each night…She stayed by my side the whole time. Best dog in the world. My princess.

Love you always and forever,
Kirby

People do not cry because they are weak, but because they have been strong for too long.

After I returned home, as I predicted, I got a little sick, dehydrated and had a few ER trips. But, I’m feeling much better now and am ready to unveil my ultimate TSA and traveling wisdom! I want to thank Sea-tac mostly for being very understanding and seemingly educated on all my equipment and medical needs. Perhaps it is due to the GP awareness that stands out here in Washington, and the amount of them just going through the airports, or maybe it is because of the amazing people at G-Pact making their rounds with TSA and other government run agencies that will ultimately need to deal with medical equipment and the people that use them. I don’t know, but I had a very easy and enjoyable time getting through the checkpoints at Sea-tac even with my service dog, Ellie. Regardless, here is a list of things I recommend when travelling with any sort of feeding set up or require special attention at checkpoints or at the gate.

• Make sure to visit each of your doctors within two weeks before your flight to make sure you are healthy enough for the trip and to have all your medications filled so you don’t run out while you are away
• Print out and complete the Travel packets found on the Oley site (download the whole packet so you can fill it in on your computer if you want and discard the info that isn’t important for you)
• Have your doctor sign the documents you printed out (I printed out 4 copies – 1 for me, 1 for each airport, and 1 for the hospital should I need to be seen while away)
• Call ahead and have your TPN or Formula and all your supplies for the time you’ll be away, shipped to your destination. It eliminates the fear of forgetting something important. Most companies have offices around the country and can easily ship to anywhere you go, even out of the country. Make sure you know the exact date your shipment of supplies will arrive at your destination and that there will be someone there to take care of it. I know my TPN had to be taken immediately to the fridge as Arizona is HOT outside and will kill my TPN if not taken care of properly.
• Check-in online 24 hours before your flight so you can change seats, trying to get one with more leg room
• At check-in (checking baggage or not, I did) ask for an escort pass – I had my husband, and my parents on the way back, escort me through the checkpoints as it made it easier for them to keep an eye on my things (and my dog) as I was taken aside and patted down
• Tell TSA everything you have before even starting the pat down. Some, it will be their first encounter with your setup.
• GO THROUGH THE CHECK POINTS HOOKED UP TO YOUR FEEDS, it just makes it easier for them to believe you and be comfortable with everything
• They will swipe down all of your things that cannot go through the scanner (pump, backpack, medical supplies, formula) and make sure there is no bomb residue on it
• Your escorts can go straight through to the gate if you want. I find having people there helps with the anxiety. It was my first attempt to fly since the rules were changed last December.
• If travelling with a service dog, like I did, tell the flight attendants before you board to make sure your seat will be good enough for a service dog (Sea-tac kept the seat next to me open – I opted for the isle seat – so that my dog would have more room when they learned of my service dog…again, Sea-tac is amazing)

I think that is all. If I remember anything else, I’ll be sure to update the list. But this is what I did to prepare for my short little 3 day weekend trip. I was also travelling with my service dog, so I had to make sure she was up-to-date with all her shots and had enough food, treats and whatnot. It was all a huge learning experience. Here are a few pictures from the trip =) Our next big trip will be for my sister’s wedding in December. That trip will be much longer (2 weeks) since it will also include Christmas! Yikes! I’m still debating on whether or not my Ellie will come or not =)

Ellie at my feet on her first airplane ride; she did amazing!

She was super shy at first; we weren’t there long enough for her to get used to all the other dogs

Always good to meet up with family; I miss them so much!

Catching up with my first dog Riley who I got when I was 16. Ellie I got when I was 26. Amazing creatures and best friends =)

Christmas morning landed me in the ER at the closest hospital (which unfortunately happened to be Evergreen – I do not recommend this hospital if you actually want to ever leave in a timely manner) due to fluid retention from the previous day’s fluid infusion. When I came in however, my bloodwork wasn’t quite right, I was underweight, dehydrated and malnutritioned. They also did a CT scan with contrast, when I arrived, showing dilated loops of bowel, suggesting blockage. It was then they diagnosed me with CIP:

Intestinal pseudo-obstruction (false blockage) is a condition that causes symptoms like those of a bowel obstruction (blockage). But when the intestines are examined, no obstruction is found. A problem in how the muscles and nerves in the intestines work causes the symptoms.

Pseudo-obstruction symptoms include cramps, stomach pain, nausea, vomiting, bloating, fewer bowel movements than usual, and loose stools. Over time, pseudo-obstruction can cause bacterial infections, malnutrition, and muscle problems in other parts of the body. Some people also have bladder problems. (Inspire Support Group)

Well good, a new diagnosis that seemed to help me understand a bit more as to why sometimes I had difficulty feeding through my J-tube. I thought my motility problems were only in my stomach, come to find out – they also involved the rest of my intestinal tract as well. Great! Knowing is better than not knowing in this case, I suppose.

My own Christmas Tree…It twinkles in the lights of the cars, buildings and blinking lights of my pumps

So new diagnosis + old diagnosis + newly inserted Picc for TPN…Set me up, sign me out – I’m ready to go home. I knew that chronic illnesses like GP aren’t cured in the hospital, if at all, just managed so I was expecting them to patch me up and sent me home. NOT the case. They seemed to want to keep me there as sort of a project, an experiment if you will. They were not at all familiar with GP or CIP and were working off a day by day plan. I was lucky to see my doctors each day by 6pm if at all. The hospital was beautiful and the nurses were nice and the doctors seemed knowledgable but the management was HORRIBLE. Let’s just say I won’t be going there again. However, late at night – their understaffed hospital allowed us to sneak in my 70lbs Bernese Mountain Dog puppy, Ellie to visit. Pets make everything feel better in ways doctors and nurses never can.

After I had enough of their poking and prodding with no results to show for it, I called Dr. Patterson (whom they had not even contacted during my entire hospital stay) and told him what was going on. I asked him if it was ok if he talk to the hospitalist GI, and he agreed. A few minutes later, she walked in and told me I’d be ok to go home the following day on TPN. I felt sort of bad because I knew they wanted to help solve my problems so badly and I knew they couldn’t. But I was ready to go home. I already missed Christmas and a snow storm…yeah, I was ready. So December 31, 2010 I was discharged from Evergreen Hospital, never to return again.

Different dressings of my PICC which was horribly placed at Evergreen Hospital, thanks guys!

Setting up for my new evening routine. Don’t let people tell you it is equivalent to brushing your teeth because it isn’t, at all! You get used to it and you get faster, but it still takes time and you still have to be super careful!

I made it about a week at home before pain started kicking up to levels that were far beyond my capability to control them. With the CIP diagnosis and GP, Dr. Patterson took me off all pain medication leaving me with only Tylenol. Haha, yeah – that’s going to help. Maybe if I took the whole bottle at once, it might take the edge off enough to walk. I promptly called up Virginia Mason (my comfort zone) and asked for the doctor on call. Who do I get but my Interventional Radiologist, Dr. Siegal. I told him I was experiencing excruciating and debilitating pain in and around my j-tube that radiated to all parts of my abdomen to the point of not being able to use it for the past several weeks. He advised me to come in to the ER and see what could be done. My wonderful husband took me to the VM hospital 30 minutes away. There they drew blood and tested urine and blood pressure. My blood levels came back abnormal, such that they could not let me leave. I was admitted again on the 8th of January. I was given Dilaudid, sleeping medicine (as by this time, it was quite late), and slept it all off.

Early morning my doctors did their rounds. I was not used to this. Doctors? You mean, I don’t have to beg for them to come see me and they are actually here before 6pm?! WHAT IS THIS PLACE. I love you VM. My potassium levels were low, hematocrit was really low, dehydrated and still malnourished. Basically, I felt like crap. The dilaudid was wonderful in controlling the abdominal pain and the rolling migraine that seemed to keep me company during my ENTIRE stay. With low hematocrit levels, they felt I might be bleeding within my intestinal tract (reason for pain). They scheduled me for a colonoscopy and endoscopy for the next morning. Yep, that also meant I had to do the prep. Why? Don’t know. But I did it. I put it through my tube and too fast apparently as it backed up into my stomach and eventually I puked it all back up. Not just the clear GoLytely, but stool. Yeah, not pleasant. Determined, I got the rest of that gallon down and had a successful couple of scopes with normal results. Unsure of where the bleeding was coming from, they simply infused me with iron.

Since VM is the hospital Dr. Patterson left for Swedish, they know him well and they know that I still see him as my GI. My main concerns after my blood levels were stabilized somewhat, was the abdominal pain. They were not going to even go there. I told them Dr. Patterson said to pull the tube and they are like…”We’ll just let him do it.” So I was released on the 12th of February after getting stabilized and saw Dr. Patterson the next day.

When I went in to see Dr. Patterson after being discharged, I was still in considerable amount of pain. He gave me two options: take the whole tube out or deflate the balloon and see if it is just the balloon that is causing the pain while taping the rest of the tube to the outside of your body. I was not a fan of option 2. He sent me for x-rays anyway. After thinking about it that night, I called him and told him I just want the tube out. It was a hard decision as it took so much work just to get it in. But it caused too much pain and I wasn’t even using it, it wouldn’t be logical to keep it in.

He told me to see my PCP and ask her opinion and have her look at it and have her draw some blood. So I did but she didn’t change my mind. My mom was in town but she left early early Sunday morning so I wanted the last day, Saturday to be free from medical stuff, appointments and hospitals, even if I was in pain – I’d have a smile on my face.

Once she left (1/16/11), my husband took me to Swedish’s ER where I told them everything stated here and luckily they found Dr. Patterson and luckily Dr. Patterson (still new to the building) found me. I told him to take it out. It was already extremely painful so I knew him taking it out would just suck even more and it did. As soon as it came out, he knew where most of my pain was coming from. When my button was put in, the tube part wasn’t cut short enough. It ran through nearly all of my lower small intestine and because it was so big, it would nearly immobilize it. When it needed to move to push food through – that’s when it hurt. Plus the button itself got stuck between my ribs so whenever I would breathe or when my intestines moved, it would pull on that button causing waves of pain. So it is better out. Maybe down the road, I’ll be able to get another placed – we’ll just have to see.

So that is my little story as to why I haven’t updated in awhile. I just found some time and energy to put this up and even this took a few days. And in those few days my line might have become infected putting me back in the hospital. Happy thoughts! I hope everyone is having a good tummy day and thank you for your thoughts and prayers!

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.