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Back from the Dead

It’s been a really, really long time. I know it. The lapse wasn’t intentional; there have been a few pretty big things that have happened fairly recently that contributed to my nonexistence in the past six months.

Let’s see…after a couple of months of contemplation, I decided to accept a promotion at work, which moved me from my three day per week role into a full-time Marketing Manager position, which I was happy about. It took a good bit of time for me to decide if the move was right based on the needs (demands) of my body, but I figured it was worth a shot, particularly because it has come with some pretty incredible health benefits. My annual deductible has now gone from $10,000 per year (which I have met the last three years by summertime) to $100. For the year. It’s insane. Almost too good to be true. I’ve been full time now for a month, and though my body is still playing catch up and reminding me that I can’t ignore its demands, things are working out okay. I’ve been pretty strict on maintaining my exercise regimen and eating regularly, which I’m sure is helping, and it’s great that my work week is no more than 45 hours, which is a complete 180 from my days in hotel operations.

Of course, I’ve still been kept busy with my every six to eight week visits to the hospital for the continued obstructions that I’ve now been dealing with regularly for the last three years. That still sucks, but I made an important decision over the summer that allowed me to regain at least some control over the amount of pain and bullshit I would have to endure with each obstruction. It had been nearly eight years since my port had been put in, and it was starting to act finicky when it was accessed. More often than not, blood returns were hard to get, and I’d find myself contorting into all sorts of weird positions just to get the damn thing to put out a little blood so my medications could be administered, and several times my best attempts failed, and I was faced with dozens of IV sticks to my hands and arms as the nurses tried to find a working vein. That alone is bad enough when you’re going in for an iron infusion or something, but in the ER when you needed pain and nausea meds, like, yesterday, and you’re head’s spinning and you just want to burn the place to the ground, it’s a special form of hell. These ER visits were happening way too frequently, and almost every time a CAT scan was ordered, at which point the nurse would tell me that my port couldn’t be used for the contrast since it wasn’t a power port. I knew this, of course, but it didn’t make me argue any less. Then they’d have to dig for a vein in my arm that doesn’t exist, I’d get angry, they’d get frustrated…it was bad.

So I decided it was time to take back some control over what I could. Now, I couldn’t control the fact that what remained of my digestive system insisted on functioning like a poorly designed European toilet, but I knew I could make the hospital visits a bit more bearable. I made an appointment with my surgeon and laid all the cards on the table for him during our visit. His first comment upon walking in the door was, “Wow, you’ve been in the hospital a lot”. Yes, yes I had. I told him that I understood why he didn’t want to do another surgery to remove the scar tissue at this point due to my ‘hostile abdomen’, but that I needed to find a way to find some quality of life dealing with all of the repeat hospital visits. I told him about the temperamental nature of my port, and when I told him how old it was and that it wasn’t a power port (which is a newer version they now install that is capable of supporting the high pressure needed to push contrast solution through the line for CAT scans, etc) he looked baffled. He told me we needed to fix that right away, so at the very least, I could be assured that I wouldn’t have to fight with the doctors and nurses during each visit when they were trying to (unsuccessfully) put in an IV line. I felt relieved that he understood, and made the appointment for the surgery to remove my existing port and install the new one in mid-June.

When I woke up, the new port was now on the opposite side of my chest and higher up toward my collarbone than the old one had been, making it a bit easier to access and get a blood return from. I had two more scars, sure, but let’s be honest – those are the least of my concerns. It’s kind of like that scene from The Princess Bride just before Inigo Montoya kills the Six-Fingered Man. Remember how he stabs him with the sword in each shoulder? It kind of looks like that. I took an online poll with a picture to see what people thought the best story would be for my new battle scars, being that I tell most onlookers who stare at my scar-covered abdomen that it was from a shark bite. We decided to go with the story that I was impaled while running with the bulls in Pamplona.

My hospital visits since then have been much better. I’ve had no issues getting blood returns from the new port, and now there’s no need for an IV to run the contrast through for the CAT scan – everything just goes right through the port. It’s little things like that which make living with this disease just a little more bearable.

The other main thing that is a recent development in the last six months is something that I’d never thought I’d ever say. I’ve become a runner. Had you told me this six months ago, I would have called you nuts, among a few other names which I cannot list here. I’m not exactly built for running. My boobs are huge, my legs are short, and the only places I’ve run to in the past have been the bathroom or towards a taco truck. It’s just a fact. I’ve always been fond of a good workout, but I needed something different than the usual gym environment and circuit training I had been doing. I was frustrated with my body and what it couldn’t do, and needed regular alone time to just zone out and not think about my limitations or my frustrations. I’d tried traditional meditation in the past and failed miserably. How in the fuck am I supposed to think about nothing? Meditation infuriates me. No, that wouldn’t work. So I decided one day to start that Couch to 5K program, thinking that I could use that as a goal to work toward so I could look at my body in a different way.

Of course, I started this in June in Texas, so I spent the entire summer getting up crazy early just to run before the sun came up and it got to 105 degrees. It was hot, it was humid, and at first I hated it. I kept plugging away all summer, and as the weeks wore on, even though it was 80 degrees at 6am and I was uncomfortable as hell, I enjoyed the quiet time to myself on those runs, and it gave me time to just deal with my frustrations and work through them. I finished the program in early August and decided I wanted to keep going, so now I’m running close to 4 miles four days a week.

Let me be clear: it hasn’t been easy. My joints are sore and swollen on a good day when I wake up, so I’ve been using profuse amounts of Dream Cream and my Ironman bath salts to combat that, and there are days I’d much rather sleep in. The main motivating factor is that it’s given me something positive to focus on that my body can do, rather than all the things it can’t. It puts my mind in a clearer space, one where I’m not stressed all the time and worrying about when the next ER visit will be. And now that I’m approaching my ninth anniversary of that first surgery, I’ve been thinking about what I want to do for my tenth, finding a way to keep myself moving forward while doing something to raise awareness for this disease and those who have lost their lives to it. My anniversary of that first surgery is November 2nd, so I think it would be pretty fitting if I could celebrate my decade of colonlessness by attempting to complete a half-marathon where it all began – back in Philadelphia. I don’t think my body would be up to the challenge of a full marathon, nor do I have the desire to put one of those stupid 26.2 stickers on my car. It’s not really about the distance, it’s about bringing things full circle and maybe finding a way to do some fundraising for a good cause along the way. I want to do something positive to honor all the heroic efforts of the various doctors, nurses, surgeons, friends and relatives over the past (almost) decade. For all those who provided medical care, listened, offered support, or simply just stuck around when it was easier to just walk away.

There’s a picture I have that my mother insisted on taking when I was still in the hospital recovering from that first surgery. I was out of ICU by this point, and one day when Dr. S came to check in on me, she snapped a photo of the two of us. There I am in my hospital gown, malnourished and gutted like a fish, but smiling with the man who had just saved my life. He asked for a copy of that picture years ago, and each time I talk to him, he mentions that he still has it on his desk. Each year on that anniversary, I send him a card thanking him for what he did on that day, and for all the other surgeries he pulled me through. Next year, I want to be able to send another photo with that card – but one that tells a different story. One that says “I kicked Life’s ass” and not the other way around. Am I certain that I can do it? No, but I wasn’t sure I could do any number of things that I’ve been through over the last nine years, either.

So there it is, now I’ve said it, so I’m going to have to try and follow through. As for the posts, I will try to be more consistent than I have been in the last few months, and at least put up a new one every month. There may not be many that read them, but I’ve received wonderful feedback from those that do, and that’s more than enough for me.

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Vitamin & Mineral Deficiencies

I’m back (finally) with an overdue post on vitamin and mineral deficiencies that are possible with IBD; I meant to get this written up sooner, but the Big, Bad Wolf visited us here in Texas last week and tried to blow our house down. Well, more like he tried to pummel it into the ground. April can be a bizarre month here, and this year was no exception. Last weekend, my husband and I were sitting out on the back patio one night, reading and enjoying a fire. All of the sudden, the TV in the living room sounded it’s Emergency Warning siren (which I have long ago learned is NEVER a test here) and the bulletin said that there was a Severe Thunderstorm Warning, with a storm moving through a town about 10 miles southwest of us. I looked toward the sky, noticing a very faint flicker of lightening in the distance, and told my husband that we should probably head inside. I headed in, taking both of our dogs with me, and was inside for all of about two minutes, closing windows, etc, when I heard the thunder, so I went outside again to tell George to get his ass inside. The words were barely out of my mouth when the sky opened up, sending golf ball sized hail into the house from every direction. We could barely hear each other speak inside the house it was so loud; it sounded like we were being bombed with mortar shells. We grabbed both dogs and headed into the guest bathroom, which is one of the only rooms in our house without a window. We waited in there about 15 minutes, until the hail lightened up and the winds died down. George was typing away quickly on his phone, and I wondered who on earth was so important that it couldn’t wait. He was emailing the insurance agent already, quite sure that we would have some broken windows to deal with.

By the time the next morning rolled around and we could fully assess the damage in the daylight, we had lost nine windows, three outdoor lanterns and the gutters. We had serious questions about the roof, which were affirmed when the insurance adjustor stopped by and told us that the entire roof would need to be replaced, too. It was some storm. So of course this last week has been a mix of cleanup and various meetings with repair people to get the damage fixed.

Anyway, as I mentioned above, I wanted to do a post about vitamin and mineral deficiencies that can occur in those with IBD; these can be caused by a variety of factors such as malabsorption, chronic inflammation, surgical removal of small or large bowel tissue and occasionally the medications used to treat the disease. It’s good to be aware of them in advance so you can request that your doctor run some tests if he or she hasn’t already to see where you stand. Better to get ahead of it than run the risk of a long term deficiency that can, in some cases, be life threatening. Your levels of the vitamins and minerals below can be easily obtained by a thorough blood test, just make sure that you specifically ask for each to be screened. Here we go…

Protein – can be deficient due to use of Prednisone, extended periods of blood loss, chronic diarrhea and the presence of wounds or fistulas in the small bowel.
Fat – can have malabsorption due to severe Crohn’s ileitis, or in cases where more than three feet of the lower small intestine have been removed.
Iron – anemia due to chronic blood loss can occur, in addition to absorption issues in those with portions of the bowel surgically removed. If you’re going to get a test for your iron levels, request a full iron study that, in addition to your basic hemoglobin levels, will include your B12 and ferretin counts, which is a measure of how much iron your body is actually capable of storing for future use.
B12 – extensive inflammation or removal of the ileum can cause deficiencies. While B12 supplements are sold in pill form, for a true deficiency, injections will be needed to properly absorb this vitamin.
Folic Acid – both sulfasalazine (Asacol) and methotrexate can affect the metabolism of folic acid, so supplementation is often needed if you take either of these medications. Also can be deficient if you have Crohn’s in the middle section of the small bowel, or if this area has been surgically removed.
Potassium and Sodium – anyone who has had their entire colon removed will likely run into challenges with this, as the large intestine is (or was, as in my case) where fluids and electrolytes are processed. Low levels of either of these can cause severe problems, even death, as they are responsible for a proper heartbeat and the regulation of blood pressure. For potassium specifically, anyone on prednisone or who has chronic vomiting or diarrhea is also at risk. Drink supplements can help with this, I use the Nuun brand, to which there is a link on the Resources page.
Calcium – anyone on prednisone can be at risk, not to mention anyone with a lactose intolerance, as many with IBD do.
Vitamins A, D, E & K – basically, all the fat soluble vitamins, due to the possible issues with fat malabsorption mentioned above. The medication Questran can also interfere with vitamin D absorption. Vitamin E is also available in a water soluble form, which may be better for anyone with IBD.
Magnesium – anyone with extensive inflammation or who has had the ileum removed can be at risk. Magnesium is important for bone growth; a deficiency here can also lead to problems with potassium and sodium levels.
Zinc – anyone on prednisone, with chronic diarrhea or with extensive inflammation. A deficiency in zinc is a little more rare than the rest, but levels too low can further compromise the immune system.

I know, it’s a lot. Plus, many of us don’t digest pills very well, so there’s that, too. However, many of these come in liquid form, which will prevent you from dropping money into the toilet on a regular basis. A great site that I’ve used for a while with pretty good success is Vitacost; I’ll put a link to them on the Resources page. It’s important to note that you should talk with your doctor about any supplements prior to taking them, as levels too high in some areas can also cause major issues as well (referring to potassium and sodium here). Not something to mess with, and I’ve been hospitalized due to my low potassium before, so I speak from experience. Keep in mind to that with the electrolytes, as we enter into the warmer months (or if you live in a place where it is just hot as balls most of the year, as I do), you are more at risk for low levels due to perspiring more. Dehydration is one thing, but keeping the electrolyte levels in balance to one another can be tricky, so please talk with your GI about your optimum levels and how to achieve them.

I feel it’s also important to note that even for those who may not have had surgical removal of parts of their bowel or extensive inflammation, the dietary restrictions forced on us from IBD (i.e. lactose intolerance, avoiding nuts and seeds, raw leafy veggies, etc) can also contribute to decreased levels in some of these. I mean, just take a look at the foods with the highest levels of vitamin K or E – it basically reads like a list of “Things I Should Eat When I’m Dying to Visit My Nurse Friends in the ER”. Kale? Swiss Chard? Nuts? Yes, Mr. Trebek, I’ll take “Bowel Obstructions” for $500, please. Why can’t all this shit be obtained by eating ice cream and tacos??? That’s what I want to know.

Hope you’ve found this helpful! Here’s to a great week, as well as new windows and a roof.

The Power of Food

Food is a powerful thing for me. I’m not sure if I’m different from others in that respect, or if it tends to go hand in hand with having IBD for such a long time. Let me clarify here, I’m not talking about being a “foodie” (a word which I happen to loathe for reasons unknown to even myself). I’m talking about an intense relationship, one similar to that with a lover, a family member, or religion. I experience things through food. Places, events, cultures – even emotions.

I would venture to guess that this intensity goes way back to the time frame about a year before I was finally diagnosed; I would have been about 20 years old and was beginning to restrict my diet more and more to try and alleviate the unbearable symptoms I was having at the time. First raw vegetables were cut out, then fruit, followed by dairy. Cooked vegetables didn’t work either, so those were nixed, as were beans and most carbohydrates, including plain white pasta. After about three months, I was subsisting on Ensure shakes and water alone, and even that wasn’t keeping the symptoms at bay.

A good friend of mine recently reminded me of a trip we had taken to Ireland together during that time, mentioning that she remembered having to help me carry my luggage through the airport since I had so much. I hadn’t packed tons of clothes or shoes. No, I had an entire suitcase devoted to my Ensure shakes, as anything else left me crippled with pain and praying for death. The entire ten days we were there, I carted them around with us so I’d have some sort of sustenance. I can’t believe I had forgotten that memory until she brought it up.

Shortly after that trip, I was fortunate enough to go on a cruise as a guest of someone who worked on the ship, and as I was going to be staying with him in his cabin, there wasn’t going to be room to store my Ensure shakes. For that week, I allowed nothing except water to pass my lips all day long until dinner, at which point I allowed myself a dinner roll or two, pushing the rest of the food around on my plate in an attempt to distract my dining companions from my strange behavior. I think I dropped about six pounds that week, weight that I really couldn’t afford to lose.

Once I was diagnosed and started on medications, the symptoms improved only slightly, so it was roughly about five years of this complete breakdown of my relationship to food. Five years is a long time. Food scared the shit out of me (quite literally), and I came to associate almost all of it with pain, bleeding, endless days and sleepless nights. It was such an odd concept for me, someone who comes from a family that has always enjoyed eating and drinking together as one of the cornerstones of our belief system. I don’t think I even walked down most aisles of the grocery store during that entire time. I’d simply walk in, head to the dietary section, pick up my Ensure and head to the checkout counter. That was it.

All that changed with the first surgery in November of 2006. I’ve written about that before, and the complete 180 degree turn I did afterward, wandering up and down each of the aisles at Whole Foods, clutching the gift card my aunt had sent me to celebrate the fact that I was able to eat real food again. Food felt foreign in my hands as I picked it up, and the smells in the produce section were almost overwhelming. Tasting the food for the first time (after I inhaled the infamous roasted vegetable panini, of course) again was so strange. The texture, the different areas it hit on the tongue. It was all a revelation. We’re all subject to that first experience with real food as babies, of course, but I’d venture to guess that none of us remember those first encounters. I was tasting things for the first time again, essentially a born-again virgin to the food world.

There were many more surgeries that followed, of course, and due to the number of them and the severity of the issues, I spent about six months with a feeding tube over the course of the next several years, my only nourishment getting pushed into my body via either TPN or the gastric tube in my stomach. Coming back from those stretches was even more difficult, as the mere sight or smell of any kind of food would immediately make me nauseous. The dieticians at the hospital described the experience as similar to those recovering from anorexia. Once I was finally discharged, my mother spent weeks trying to make me my favorite things to get me to eat, and none of it worked. Sometimes it took up to six weeks for something to finally smell good to me and gave me enough of a push to try it. Usually it was something totally random like guacamole or pumpkin soup. No rhyme or reason to it at all.

Given all that, you can probably understand then, why food is such a powerful force for me. When we travel, instead of looking up tourist attractions to visit, I’m scanning the restaurant scene, planning out where I’d like to eat – after such a long time spent being deprived of food, it is my opinion that I simply do not have the time or patience for a bad meal.

Which brings me to New Orleans.

For my birthday, typically my husband tries to plan a getaway for us, as he knows my love of travel and food, not to mention any excuse to play with my camera and get some pictures, as photography is something I enjoy as a hobby. Last year, we spent a week in Santa Fe, and this year when we were discussing options, I told him it had to be New Orleans. Believe it or not, at 35 years old I had never been before, likely a product of the whole “I spent my 20’s either in surgery or in the hospital” thing. Plus, drinking until I puked and running around half-naked collecting strands of beads to wear had never really been my thing. That was the extent of my perception of New Orleans, though I knew they had an amazing food scene and I was anxious to try it. There’s something to the principle of eating things where they’re done best (at least, that has always been my thought process), so I had never bothered to try gumbo, bananas foster or anything Creole because I hadn’t been to the right place to experience it.

I think my insistence to finally do New Orleans and do it right came about because of all the recent hospital stays for bowel obstructions. Given the last year or so, it’s pretty clear that we’re building up to another crescendo of activity, which I’m guessing will result in some form of surgery by the end of the year. I don’t like to be pessimistic; I’m simply looking at the evidence and where we’re at now, and it ain’t good. I know that because of all the surgeries and scar tissue, the amout of small intestine I have left is basically the minimum amount one can work with, so if anything else has to be cut out or removed, I’ll likely need at least supplemental TPN for the rest of my life. Not a fun possibility to consider. So, if I’m going to be deprived of food again for an extended period of time, I wanted some memories to savor, damnit.

In preparing for the trip, a former colleague of my husband’s who was born and raised in New Orleans and now works for The Brennan Family restaurants, reached out to us and asked us to be his guests for dinner one evening at The Palace Café, and lunch another day at Tableau. Um, okay. Then on my own, I listed about a dozen other places that looked really good, and figured we’d get to as many of them as we could. As we prepared to leave, friends were telling me about voodoo tours and other attractions, and I listened to them, smiling to myself. No, that was not to be the purpose of this trip. I was going to eat and take some pictures. End of story.

Upon arriving into the city, after checking in to our hotel, we walked around the French Quarter for a couple of hours, grabbed a café au lait at Café du Monde, and then headed back to get changed for dinner. I had picked a place fairly close for the first night called Herbsaint, and the meal there did not disappoint. There was an arugula salad with grilled leek vinaigrette and shaved parmesan for an appetizer, followed by baked asiago cheese. My entrée, which was baked drum in a Provencal broth with mussels, tasted incredible, light but incredibly full of flavor at the same time. Having stopped my Flagyl for a few days before the trip so I could enjoy a little wine, I had a glass of Sauvignon Blanc to pair it with. Dessert was a banana brown butter tart with a scoop of vanilla bean ice cream. It was all amazing. I was stuffed, being accustomed to eating smaller portions more regularly throughout the day than three large square meals, but that was a small price to pay. We walked slowly back to the hotel afterward and slept like the dead.

The following day, we woke early and threw on jeans to head down to Mother’s for breakfast, a place my husband had been waxing poetic about for months. He had fond memories of many breakfasts there in his youth; he warned me that it was a dive, so I was prepared. Good soul food cooking is what they served up; eggs, a biscuit, fruit and grits were plenty for me, though he reveled in something called “debris”, which is essentially all the little bits of meat left over after cooking sausage, bacon, beef, etc. all thrown together in a nice jus. We had planned to do some more walking around after breakfast, but torrential rains forced us inside, so we spent about four hours at the WWII museum, which was much more interactive and extensive than I had thought it would be.

Hungry after a morning of educational pursuits, we headed back to the hotel, passing The Ruby Slipper café on the way and ducking inside for some lunch, which was perfectly timed as the downpours became heavier again. Given the weather outside, it was a perfect day for some shrimp and cheddar grits, after which a nap was most certainly in order. As we got ready for dinner that evening, I knew I’d need a good strategy, as I wasn’t nearly hungry enough for a large meal. We headed to The Palace Café and met up with my husband’s friend and his wife, and I enjoyed a lighter dinner of a cup of seafood gumbo and an appetizer (as my entrée) of grilled oysters, which luckily left me room for dessert, the fabled bananas foster I had heard so much about. Well worth the hype, in my humble opinion.

The next morning I cried uncle, telling my husband that I couldn’t handle another big breakfast when we had lunch reservations with his friend at Tableau at noon, so we decided to head over to Café du Monde for café au lait and beignets, which at least felt a lot lighter in the stomach than I’m sure they actually were. From there, we walked all over the town and back with my camera at the ready, taking pictures of windows and doors, which is sort of my photographic obsession. I love old doors, the more deteriorated and weather beaten, the better. Four hours later, our feet ready for a break, we met our friend at Tableau and got a tour of the entire building, which had been renovated a couple of years ago. The history alone to the place is amazing, but the way in which it was decorated is simply perfect. It sits right on Jackson Square, and there is a wraparound terrace overlooking the square, a courtyard with more seating, a wine room and several dining areas. Seated by a large window overlooking the courtyard, I ordered an appetizer of oysters wrapped in bacon skewered on a rosemary sprig (amazing) and then a half portion of the roasted gulf fish in a praline sauce, which was served over a bed of haricots vert. It was awesome. Again, the half portion of the entrée was intentionally done to allow for maximum dessert consumption, and for the table we split an order of vanilla bean crème brulee and the monkey bread (made of biscuits) with a brown sugar glaze and vanilla ice cream. Thank god we ended up walking about six miles that morning all over town.

After lunch it was back to the hotel for a little rest before our final dinner of the trip with another one of my husband’s colleagues, this time at Domenica, inside the Roosevelt Hotel. I figured this would be a good ending for the trip, as we had been stuffed to the gills with good southern home cooking, and an Italian meal sounded like a nice way to balance out the day. The three of us shared a nice cheese plate (a robiola, a parmesan, two blue cheeses and some prosciutto) along with wine before pizzas; margherita for me, prosciutto and arugula for my husband and a third one we all split that had roasted carrot, hazelnuts and shaved brussel sprouts. Sounds really weird, but it was very good. Never one to pass up dessert, I went on the lighter side with fresh strawberries topped with cream and a few crushed meringues and a cappuccino.

The next morning, we packed up our things early and had breakfast in the restaurant at the hotel; since we would be in the car for a long stretch I ate a more “normal” meal for me of a couple of poached eggs, some wheat toast and a side of fresh berries. I popped a couple of lomotil before we left and we hit the road, wanting to get past Houston before rush hour. I was fine for the first hour or two, but by the third hour, I started getting nauseous. That’s not uncommon for me during long car trips, so when we pulled into a gas station, I got some dry crackers to snack on and we continued along.

Another hour later, and I began having mild cramping in my stomach, so I started drinking more water and asked my husband to stop at a rest area so I could walk around and stretch my legs a little bit. I must have looked uncomfortable, because at that point he asked me if everything was okay. I confessed that I was showing early signs of a bowel obstruction, and told him that I wanted to get home and take a nice long walk and drink one of my Roto-Rooter sodas. I thought that would do the trick, but we were still about three hours from home at that point. Another hour passed and I was certain it was an obstruction. The pain was sharp and intense coming in waves every five minutes or so. Tired an exasperated with my body, I told my husband that we should just stop at the ER downtown on the way home and hope that I would pass it that night without having to be admitted. As we drove, the skies opened up and torrential rains continued for the next hour or so of the drive. My husband was torn between trying to drive carefully and just wanting to get me comfortable as soon as possible.

As we neared downtown, he told me that we should try to go home first and see if walking would do the trick; as we had been cooped up in the car for so long I hadn’t gotten any real activity so far that day and both of us thought that was likely part of the problem. He told me if that didn’t help, we would get back into the car and head right over to the hospital. I think the poor thing just didn’t want the vacation to end on such a sour note and didn’t want to be cooped up in the ER for another six hours, not that I blamed him in the least.

We got home and unpacked, and the two of us walked the mile and a half loop around our neighborhood that we usually do with the dogs each morning. Once back, I sipped some hot tea and used my heating pad on my stomach, and slowly but surely, the obstruction began to pass. Lesson learned; before any lengthy car trip now, we’ve discussed that I need to walk a couple of miles as well as stop every two hours to walk around for ten minutes or so. I really think that was the main problem, and I’m glad we didn’t have to end the trip lying in the ER.

So that was New Orleans. You can keep the voodoo, the beads and the open containers of alcohol on the streets. Just give me a frozen café au lait, a beignet and point me in the direction of the next great meal.

Birthday Obstruction & Trying Out a New Hospital

I had the weekend planned out for myself. As I finished work on Thursday, I was looking forward to the following day, which was to be the day before my birthday. I had purposely scheduled several treatments that day so I would be feeling my best and completely relaxed for the weekend, and to celebrate my 35th birthday on Saturday. Friday was supposed to start with a morning workout, followed by a massage, then a pedicure and finally a cut and color to round out the day. I had been looking forward to it for weeks. But it was not to be.

I got home from work that Thursday evening and walked the dogs, enjoying the beautiful evening. My husband was traveling for work in San Antonio and wasn’t due back until the following afternoon, so I didn’t have to worry about cooking dinner. I thought I’d get in a strength training session at the gym that evening, but just before I was planning to go around 8pm, I began to feel some cramping in my pelvic area. I wasn’t all that surprised, given that I was due for my “monthly visit” any day. I heated up the heating pad and sat with that on my stomach for a while, popping a couple of advil to help with the pain.

By the time I was due to give the dogs their bedtime walk around 9:30pm, the cramping was so bad that I was doubled over as I walked them, clutching my stomach in pain. I was surprised that the cramping was so bad, and it only briefly flickered through my mind that the pain could possibly be due to an obstruction. The thought passed as quickly as it came, as the pain was so low in my pelvic area, and I hadn’t eaten anything out of the ordinary all day. I had felt fine all day – surely it was menstrual cramps.

I got ready for bed and tried to sleep, but by 11pm, I knew I was dealing with an obstruction. The pain got more intense, coming in waves, and the nausea started. My husband was blissfully unaware an hour and a half away until the next day, and I was no longer going to the local hospital by us given our prior experiences there, so driving myself to the ER wasn’t an option. Plus, I have to be honest. There was no fucking way I was going to the ER only to be admitted and have to cancel my massage, pedicure and hair appointment. Sad, but true. I decided I’d ride things out until my husband got home and hoped the obstruction would pass on its own overnight. I kept the heat on it, got up at regular intervals to walk around the house and even tried drinking one of my emergency “Roto-Rooter” drinks that I keep on hand for just such an occasion, all to no avail. It was a hideous night.

By 6am the following morning, I couldn’t hold out any longer. I had been vomiting for the last 2 hours and the pain was excruciating. I texted my husband, nonchalantly asking him what time he was planning on being home. He said sometime around noon and asked why. It was now or never. I could tell him there was no reason for my query and that I’d see him later, or I could admit that we needed to go to the ER and that I had no chance in hell of keeping my day of beauty. I hesitated, responding that I thought I needed to go to the hospital. He responded a second later, telling me he was jumping into the shower and would be home in a little over an hour.

I crawled to the shower and got myself cleaned up, threw up again and managed to take the dogs for a short walk so they would be okay for a few hours, and phoned my neighbor to see if she could stop by mid-day to walk them. This would be our first time going to the ER downtown (at the recommendation of my GI doc after the last few ill-fated stays at the smaller local hospital), and it was about a 35 minute drive. I grabbed my overnight bag, cursing the entire time that I would be spending another birthday in the hospital. Grudgingly, I phoned and cancelled all three of my beauty treatments and resigned myself to the fact that I would be turning 35 with a celebratory drink of barium instead of wine. Have I mentioned how bad my roots looked? I was over it.

My husband flew in the door an hour later and quickly loaded me into the car as we began the trip downtown. I had a fresh copy of my “owners manual” printed up for the new docs, and hoped the visit would go smoothly. The last thing I was in the mood for was some know-it-all doc who refused to listen to me, yet that’s what I was prepared for. I focused on my breathing as we drove and tried to control the pain that was growing stronger with every hour.   Planning ahead, I phoned both my GI and surgeon’s offices and left messages letting them know we were on our way to the ER.

We arrived by 8am and barely had to wait, though the ER was fairly busy. A nurse came in right away and looked over my notes, nodding understandably when I informed her I had a port that I preferred to use for IV access. Within minutes, she was back with the access kit, followed by the ER doc, who listened to my husband list my symptoms since I was hunched over in pain. He immediately agreed that the normal trio of Zofran, Dilaudid and IV fluids should be administered as soon as they had me accessed, and ordered it quickly. As the nurse left to retrieve the medications, I explained to him about the small bowel series that my surgeon wanted me to have done while I was in the throes of an obstruction so that he could get a clear idea of where things were going wrong. Without hesitation, the ER doc agreed, phoning Radiology and letting them know to come up and get me for the test. We discussed putting in an NG tube to administer the barium since I was obstructed, but he thought that if I could keep it down long enough, we could get through the test without having to traumatize me further with that. I agreed and 15 minutes later Radiology arrived to bring me downstairs. I waved goodbye to my husband and told him I’d see him in a couple of hours.

Once downstairs, I chugged the barium with my nose pinched shut to hide the horrid taste and then they began the series of pictures. My pain and nausea were fairly well controlled at that point, and since I hadn’t slept at all the night before, I napped between x-rays every 20 minutes or so. Finally, about an hour and a half later, the progress of the barium seemed to stop just below my j-pouch, right where the pain was emanating from in my abdomen. Convinced they had found the problem, I was wheeled back up to my room in the ER and closed my eyes to rest again. I was woken up a short time later by a familiar sensation in my nether regions. I felt like I had to go. Could this be possible??? Might I actually get to leave the hospital without being admitted? I grabbed my IV pole and headed to the restroom, emerging a few minutes later making the victory sign to my husband.

The ER doc returned shortly thereafter, and I told him the good news. He called Radiology to come up and do one more image for me to make sure the obstruction had passed, which they affirmed. I would not have to spend my birthday in the hospital. I was ecstatic. After a little more waiting for them to disconnect my port and discharge me, we walked out of the ER around 5pm that afternoon. As we sat in the car driving toward home, both of us recapped the experience and were very pleased with the staff and the care at the new hospital. Though it was an older building and may not have been as pretty and shiny as the one nearest to us, who the hell cared? The staff were all great, listened to me and looked at my previous history to guide them, and they responded quickly when it came to getting the small bowel series done while I was obstructed. This information would be crucial to my surgeon, who now has more information about where I am having issues with scar tissue.

As we neared home, my husband asked me if I was hungry, as neither one of us had eaten all day (I hadn’t eaten anything since lunch the day before). I was starving. Knowing too well that there was no chance in hell I would be appeased with a clear liquid dinner as is typically recommended after an obstruction, he took me to my favorite burger place where I scarfed down a nice rare burger and a milkshake. (Relax, I left off the lettuce, tomato, onion and avocado I normally would have topped it with. I was starving, not crazy). Once home I laid down for a nap, and after I was treated to a better-late-than-never pedicure, we relaxed on the patio later in the evening.

The following morning, I woke up in my own bed surrounded by my husband and dogs instead of a hospital bed surrounded by machines and nursing staff. Granted, my stomach felt like a truck had hit it, but that’s normal for a few days after an obstruction. I opened birthday cards and we spent the day driving around the countryside looking at the bluebonnets and stopping for lunch at an Italian place with its own vineyard that’s not too far from us.

It wasn’t the way I expected to spend that weekend, but it could have been much, much worse. While I’m less than thrilled at racking up yet more hospital bills to add to my already bulging stack, we feel much more comfortable with the hospital care that I am getting at the hospital downtown, and are confident that when the time comes for more surgery, I will be in the right place for it. That’s a big relief in and of itself, though I’m now readying myself for the next one.

It’s incredibly frustrating, this constant rotating-door in and out of the hospital. We know what’s wrong, yet no one wants to do anything about it (and again, I understand their reasoning) until it’s an emergency and we have no other choice. I feel like a bomb with a lit fuse, one that everyone is watching slowly burn closer and closer to the end, unwilling to put it out until just before it explodes. Meanwhile, do I even need to get into how expensive this is all getting? That’s material for the next post though. That one will probably be titled “101 Reasons I Hate Cigna”. By the way, they STILL haven’t assigned me a case manager, so it looks like I’m on my own to dispute thousands of dollars in medical expenses to see what I can get taken off of the bill. They are douchebags of the highest order. I hope I get the opportunity to tell them so.

However, that will have to wait. New Orleans awaits, and I have a few days packed full of amazing meals to consume. Wish me luck that we can complete the trip hospital-visit free!!!!

Latest IF Update & Reason for My Absence

Sorry about the long delay; it’s been a really busy few weeks and I was stuck in the hospital again for another obstruction, which I’ll post about in a couple of days.  New hospital, better experience, in short.  Anyhow, finally getting around to loading the post I wrote a week ago.  —

It’s been a crazy couple of weeks, but I figured it was time for an update on IF, as I had indicated I would be trying to do periodically. Just after that last post I was in to visit my chiropractor, and was telling him about my experiment and my hopes that it would reduce my inflammation. He cautioned me on continuing with the fasting as I had been doing (fasting for 16 hours each day and eating my meals within an 8 hour window) because for women in particular, it can cause hormonal and metabolism issues. We discussed what I was trying to get out of it, and I told him a few things I had observed during the week I had been practicing IF. I told him I was surprised to see that first thing in the morning (normally around 7am), I really was just fine with some green tea, and didn’t get truly hungry until later in the morning. I also found that my morning circuit training workouts felt a little easier without anything in my stomach. We decided together that eating my breakfast around 10am at work would both keep the benefits I had described to him and satisfy my body’s hormonal balance.

Something he did tell me, which I hadn’t heard before, is that something that can also contribute to inflammation in the body is excess food in the stomach, which can only process about one cup (roughly the size of your fist) of food every few hours. Any excess beyond that can exacerbate inflammation levels, so his suggestion was to eat a small meal every couple of hours. I will admit that this has been my natural inclination since all of my surgeries, as I can’t really digest a lot of food at a time. I decided to incorporate this into my daily eating window, which I use as a mere guideline – there are no hard and fast rules, I’m really just trying to pay attention to what my body wants and the reaction my habits are having on my symptoms and behaviors.

So now that all that explanation is out of the way, my basic routine is going a little something like this:

  • Green tea with lemon upon waking, along with a few glasses of water
  • Breakfast around 10am; typically greek yogurt (2%) with a little honey, some berries and a few chopped nuts
  • Small lunch around 1-2pm; normally a small salad with some veggies and/or fruit on it with a small piece of cheese
  • Snack around 4pm; normally a Kind bar (I like most of their flavors, just can’t have anything with coconut in it)
  • Dinner around 7pm; normally meat (I rotate between chicken, pork, steak, etc) and a salad of some sort as a side.

So really, I guess you could say I’m still technically doing my IF routine, it’s just that my fasting window is only about 14 hours now and I’m eating in a 10 hour window. Feeling pretty good with that; I will say that I notice less cravings in the late afternoon hours now and as I mentioned before, I like doing my morning circuit training without food in my stomach. My bathroom trips in the morning have been reduced, which makes sense since I’m not eating until later, but other than that, I haven’t noticed any other major changes.

I should mention that I did start taking a vitamin D3 supplement last week, as my levels were pretty low according to my last blood test, and I’m thinking of starting a B-Complex supplement as well, since I’ve felt a little more tired than usual lately and am not quite due for another Feraheme (iron) infusion yet. I’ll update again in another week or two on the symptom progress; I’m also still waiting to be contacted by a case manager from Cigna to start addressing (and disputing) some of the medical charges from the last few months now that the latest set of hospital bills has started rolling in. So far, the tally is about five grand, but hey – who’s counting?!?! It’s times like this I want to move to Canada. Anyhow, once I start that process, I’ll write about that, since I know many of you likely face similar challenges. And finally, be prepared that there will be one lengthy and extremely detailed post entirely devoted to food, as for my birthday, the Mr. and I are heading on a road trip to New Orleans for a few days, a trip which I’m not ashamed to admit is devoted almost entirely to the search of the best Creole food. I’d better start doubling up on the Protonix now…

Intermittent Fasting Update/Upcoming Posts

So, I’m a week in to my little experiment with IF, as I wrote about last week.  While I don’t have a ton to update on at this point, I want to at least check in on it week to week, as I think that will help me process whether or not it’s having a positive effect on my symptoms.  My goal is to do it for a month and then really evaluate whether or not I should continue with it.

First, I will say it hasn’t been as bad as I expected.  Choosing the fasting window that I did (8pm through noon the following day) probably helped with that.  I still have my green tea with a little honey and lemon juice first thing in the morning, and I drink lots of water with my Nuun hydration tabs all morning.  I start to get hungry around 11am, and at that point, waiting an hour isn’t really that bad.  I’ve kept my diet constant, and I have lunch at noon, though I have added a bit to it to make up for not eating breakfast in the morning.  Last week it was some ground turkey that I cooked up with onion, bell pepper, and some kidney beans that I topped with diced tomato, avocado and a little sharp cheddar.  I added a bowl of cantaloupe and a string cheese to this, and was full.  I have a small snack around 3-4pm, usually a Kind bar, and then dinner, which is usually some kind of meat for protein and some vegetables.  Normally we eat dinner around 7pm, so eating after 8pm isn’t really an issue anyway.

I will say – though it’s early – that I think I have less craving for sweets in the late afternoon, which has always been a “snack time” for me.  Will have to see if that continues.  And I must admit that I let myself eat normally yesterday, as Sunday mornings my husband cooks us breakfast, so we had some grilled flatbread and an assortment of charcuterie and cheeses with fruit and honeycomb.  Just had a little bit to tide us over, as we were planning on having lunch at Salt Lick BBQ, which is a treat we allow ourselves every other month or so.  We are lucky enough to live in Austin, and have so many BBQ places to choose from, but Salt Lick is legendary.  I got my usual there, which is the smoked turkey, since brisket and other heavier meats can be a bit harder for me to tolerate with the higher fat content.  So incredibly good.  But I’m back to my routine today, so we will see what happens this next week.

I’m also planning on discussing this plan with my chiropractor tomorrow during my appointment; I want to see what his thoughts are regarding IF and whether or not it may be beneficial to the inflammatory response.  I’ll share that later on this week, along with any of my own feedback from my experience for the week.  Additionally, being that I have been knee-deep in medical bills for the last couple of years, I’m working on doing a post about reviewing medical bills for accuracy and going about disputing charges, as I think that’s something we all face.  I’ve got another round of bills ready to hit from my two hospitalizations last month, so I’m going to try to see what I can do about getting them down to a more reasonable cost.  I’ll try to have that up in the next week or two, and be prepared for some foul-worded posts.  As it is, I’ve already got a few choice words for Cigna, who have essentially refused to assign me a Case Manager to help me manage my medical bills after I have repeatedly asked for one six times.  Douchebags.

And they wonder why I wear my Fuck Younicorn t-shirt in the hospital after all this bullshit…

Chronic Disease From a Physician’s Perspective

***Please note that this is not a post I have written, but rather an article on a Crohn’s Facebook page I follow.  I thought it was a great read and wanted to share, but for some reason the link was bad.  –Michelle

A LETTER TO PATIENTS WITH CHRONIC DISEASE
July 14, 2010
by Rob Lamberts
Dear Patients: You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain – is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:

Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.
Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.
Use the ER only when absolutely needed – Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.
Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.
Forgive us – Sometimes I forget about important things in my patients’ lives. Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don’t want to admit my limitations. Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded. Well, maybe I mind it a little.
You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.

Sincerely,

Dr. Rob

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