Dear IBD Family...

     I debated for awhile over whether I should post this or not. I've been on a short hiatus from social media, because frankly I was burned out. It's always a challenge to stay positive when you and the majority of your friends have serious health problems, so from time to time I think it's a good idea for chronically ill people to take a break and focus on themselves. On top of that, I'd had several negative interactions with others which made me question whether it was worth it to be a part of the community at all. I was afraid of being accused of attention-seeking behavior for talking about my problems. So I left for awhile.

     There was definitely a part of me that considered just saying nothing and returning to social media a few weeks or months after my procedure. I wasn't in the mood for answering a lot of questions or defending my choices. It would have been easier, that's for sure. But it wouldn't have been the right thing to do. I have made many wonderful friends through social media, and I want to be honest about my situation. I also don't want anyone to worry unnecessarily. So... Here we go.

     I will be having surgery on Wednesday (12/23). I will be having a total proctocolectomy with permanent end ileostomy. This decision was made for a variety of reasons, and my surgeon and I feel that it will result in the best outcome for me. This means that I will be in the hospital for Christmas, but after being diagnosed on my birthday in 2011, it feels like the natural progression of events. ;)

     I'm not sure how much I'll be around social media before or after the surgery. Please don't be offended if I don't answer messages or texts. I've got a lot going on right now and really have no idea what shape I will be in after surgery. I appreciate the support so many of you have given me. I hope everyone has a wonderful holiday season. Hugs!

Love,
Sarah

   

The Year of Testing Continues: Abdominal Ultrasound and Head MRI

     Last time I posted, I had just gotten a small bowel MRE. Results came back a few days later and showed no active small bowel disease, but worsening of inflammation in the colon, kidney cysts, and gallstones. I had never been told that any of my past scans showed kidney or gallbladder issues, so this was new to me. The day my results came in, I had an appointment with my local PCP, who decided to order an ultrasound to see if my gallbladder would need to come out. (We're thinking some of my recent symptoms that I had blamed on IBD could be attributed to this.) We also discussed my frequent migraines, and she decided to order an MRI of the head as well to see if anything showed up.

     This morning at around 9 AM, I went to the local imaging center and checked in for my first of two tests. At 9:30, a tech took me back and performed the ultrasound. I've had several ultrasounds, most recently to look for blood clots, so I knew what to expect. I was asked to stretch out on a long table, and my shirt was pulled up (I was allowed to keep my clothes on-- no gowns!) so that gel could be applied to my abdomen. It always feels a little weird, but it was warm, so it wasn't uncomfortable. After that, the tech moved the transducer (basically a wand) over my abdomen and had me switch positions a few times so that he could get the images he needed. It pretty much just felt like a ball being rolled over my abdomen. The worst part was trying to get all the gel off my body when it was over! The whole thing was quick-- maybe 20 minutes.

     After the ultrasound was done, I went back down to the first floor to await my MRI. I've never had a head MRI before, so I was a little worried, but it was actually way easier than the small bowel MRE. Again, I got to keep my clothes on (I wore yoga pants and a basic t-shirt, so nothing that could cause problems), and there were no barium potions or IVs this time. The tech gave me headphones and covered my face with a shield, then sent me back into the machine-- and this time, I didn't have to go all the way in. Most of my body was on the outside. This test was easier, too, because I didn't have to hold my breath or anything like that. I was told to keep still, which is the most important part, though I did laugh when the very first song I heard through my headphones was "Radioactive" by Imagine Dragons. This test was also pretty quick, and I was done within half an hour.

     I should have results from both tests back next week. I'm not expecting anything from the head MRI, but I am wondering if the ultrasound will show that my gallbladder needs to come out. I have a lot of symptoms that we think could be stemming from that, so we'll see. Leave me a comment if you have any questions about either of these procedures!

Girl Meets MR Enterography!

     Yesterday, I had my first ever small bowel MR enterography. I've had multiple CT scans this year, so my new PA (who I love, by the way-- more on that in a future post) thought this would be a safer option. The actual experience wasn't bad at all-- it was what came later that was less than pleasant.

     I arrived at the center and was promptly taken back to a dressing room, where I traded my jeans and shirt for two hospital gowns and a pair of slipper socks. Then I was taken to the women's waiting area, where I watched HGTV with a bunch of other women clad in equally beautiful attire. Soon an attendant came by and gave me my first bottle of VoLumen (barium sulfate), which looks like this:

     Unfortunately, I've had this stuff before-- this picture is from a previous hospitalization. "What does it taste like?" one of the curious women sitting near me asked. (They were all amazed, as I was the only one given anything to drink.) "It tastes like shampoo smells," I said. And does it ever.

     Thankfully, I ended up being okay and finished all three containers, which I wasn't able to do last time. It helped that it was cold this time, as it tastes a lot worse when it's lukewarm. After my first bottle, the techs called me into the next room so they could place the IV (although it wouldn't be hooked up to anything until I was taken into the actual procedure room.) I've had what seems like a million sticks for IVs and blood work over the past few years, so this should have been easy. Well... nothing is ever easy with IBD.

     Possibly because my veins have been used so much lately, the technician wasn't able to find a usable vein. He mentioned possibly using an ultrasound machine (which would have been pretty cool), then called over a co-worker to help. The only veins the co-worker thought might be suitable were in my hands, so he tried my right hand. And... No. I could actually feel the needle moving around in my hand and started laughing hysterically. The technician, though in good spirits, was not laughing. Thankfully, my left hand worked, and I was taped down and sent back into the waiting room to finish my VoLumen cocktails.

     Two bottles of contrast later, I was called into the procedure room. Two kind and funny technicians told me what to expect, took my glasses (so I had little to worry about, as I could barely even see), and got me set up in the machine. I was given headphones, so I could hear the technician's instructions, but the banging sounds (more on that in a minute) were muted a bit. This certainly isn't going to be a fun test for you if you're claustrophobic (thankfully, I'm not), but the noises and motion of the machine can also be a bit jarring.

     So, what happens once you get into the machine? A few things. Most of this test (which, for me, took about 30-40 minutes) was listening to the technician's instructions about when and how to breathe. There is a lot of breath holding that goes on during this test, which can be uncomfortable. The technicians also placed a device over my abdomen that was slightly uncomfortable, as it pushed my abdomen down and heated up at various points during the test. Toward the end, contrast was injected into my IV, which made my arm feel cold and left a funny taste in my mouth. (This always happens to me, though-- I can even "taste" IV flushes.) Occasionally the machine seemed to jerk around a little bit, but it wasn't super uncomfortable, just awkward. While it wasn't a particularly fun experience, I survived and was allowed to leave directly after my procedure.

     So I told you earlier that while the MRE itself wasn't bad, what came after was pretty rough. I'm not sure what it was, as I've done similar procedures in the past, but a couple hours after the test, I started to feel sick. My entire body hurt-- abdomen, back, even my chest and throat. It felt like I was full of trapped air, and it was not coming out. I was in so much pain, I could barely walk. Eventually, I was able to pass some gas, but it still hurt... and then the, uh, "other" side effects began. Let's just say I had an unhappy night between body pain, bathroom trips, and exhaustion.

     It's now more than 24 hours since my test, and I'm starting to feel better. The pain has reduced to a manageable level, and my bathroom trips are subsiding as well. Since the MRE was conducted on a Friday afternoon, I'm expecting my results to come back sometime around the middle of next week. This will determine my treatment moving forward, as my recent fecal calprotectin test came back fairly high. If it doesn't show anything, I may be headed for another scope, which I am not looking forward to.

     I hope this helped you get a better idea of what to expect during a small bowel MR enterography! Leave me a comment if you have any questions.

Review: NatraCure Heat Therapy Mittens

     I always know it's fall again when the joints in my fingers start hurting. Thankfully, the kind people at NatraCure sent me a pair of heat therapy mittens to try out. I love them!

      It was easy to heat up the mittens, although I did have to put them back in the microwave for a little while (this really depends on your microwave and how warm you want them.) They have an inner gel lining that feels really smooth and comfortable when you slide your hands into them, and they're comfortably warm without being hot. I really liked how the indicator changes from blue to red to show that they're heated up and ready to wear.

     I ended up keeping these on for about fifteen minutes and only took them off because I needed to use my hands for something. :) They were still slightly warm at that point. My joints felt better and my skin felt smoother, too! I will definitely use these again.

     These mittens cost $29.95, although mine were free in exchange for a review. I can't wait to wear these all fall and winter long. Thanks, NatraCure!

     Buy yours at:
 http://natracure.com/arthritis-mittens.html

I am not the role model you are looking for.

     It must have been more than one thing that got me to this point. Whatever it was, it's been building for years, but today just set it off. Without further explanation, here is what I am trying to say:

     I am not a role model.

     You don't want to be me. You don't want to be anything like me. I can see it. Even among people who know me, I hear about how they hope their lives don't turn out like mine. I completely understand that. Who would want this?

     It isn't enough to just be a good person anymore. Frankly, I'm not sure it ever was. My mother raised her daughters to be nice and then apologized to us for years, saying that was probably the wrong thing to do. Maybe it was. Nice gets walked all over. Nice feels guilty for being a burden every moment of every day. Nice wants to be successful not because she has delusions of being something in this world, but because she feels that to do any less would be to let down the people who made her.

     You don't want to be me, because I don't want to be me.

     I didn't "conquer" my disease. I'm sure there would be some who say that I let it beat me, as if I could have just willed myself into perfect health. Believe me, I get it: there are people in this community, in the chronic illness community in general, who do things that I will never do. Who have multiple diseases, or are sicker than me, and contribute more to the world than I do. I must just be making excuses. If she can do it, and he can do it, why can't I?

     Because willing your body into submission doesn't work.
     Because I am not the same as anybody else, and neither is my disease.
     Because good intentions don't cure chronic illnesses.

     So no, I am not a role model. I don't inspire. I survive. I don't run marathons. I walk for a few minutes and stop. And start again. And stop again. I don't save the world. I exist in it.

     That should be enough.


    

Review: FlexiKold Gel Cold Pack (Standard)

     The lovely people at NatraCure sent me a free FlexiKold Gel Cold Pack (Standard) to be reviewed. I found out I was getting one on Wednesday and it arrived on Friday! Top notch customer service. Perfect timing, too. As part of my IBD, I suffer from joint and muscle pains, as well as exacerbations of my sciatica (which is what's going on right now.) Suffice it to say, I'm no stranger to using cold packs... and I don't particularly enjoy most of them. This one, I'm happy to report, is the best one I have ever used.

     Most of the cold packs I've used in the past were less than perfect: too hard, not flexible enough, too small, didn't stay cold for long enough. The FlexiKold Standard succeeds in all four of those areas. It's comfortable, flexible, long enough to wrap around my arm or leg, and stayed cold for so long that I didn't have to swap it out for another one. Even better, it's affordable. Mine was free, but I found it on NatraCure.com for $19.99, which is a great price for a cold pack this good.

     Thanks for a great product, NatraCure! I feel better already.

     Get your own at: http://natracure.com/flexikold-gel-cold-pack-medium.html

Fearing the known... and unknown

     I had an appointment with a "new" PCP yesterday. I say "new" because I actually saw her years ago, but I'm getting reestablished with her now that I've moved back to the area. Of the many doctors I've seen in the last four years, she is hands down my favorite. Due to her family member having UC, she understands it better than many GI doctors I've met. It seems odd considering I've seen this doctor many times before for the exact same condition... but I was still extremely anxious. This is something many chronically ill people go through, even with a doctor they've seen previously. Will the doctor believe me this time? Will she listen to me? It's exhausting.

     Thankfully, she not only believed me and listened to me, she actually wanted to help. I've been blown off by so many doctors now that I'd be insulted if I still had any expectations otherwise. She referred me to a new GI (my sixth in four years, although one of them is still on my case as a specialist), and I feel good about it. I'm actually seeing him on Monday, so I feel like both parties are aware of the urgency of my situation.

     Unless the GI says otherwise, we're going to keep trying Remicade and methotrexate for a little longer. I have to admit, I was surprised when one of the first things out of my PCP's mouth was "Have you considered surgery yet?" I have, many times, but was constantly told that I didn't want surgery this young (who does?), or that I wasn't severe enough (by severe they mean, "you aren't actively bleeding to death, just sick all the time and having zero quality of life, so we're good.") It will be interesting to see what the GI says. I don't want to live like this anymore, and I've said it many times, but no one seemed to be listening until now.

     I'm a little anxious at the thought of surgery, but far more anxious about never having a life because of IBD. I'm hoping that the GI is willing to consider it and not just going to play the "you look fine, just keep taking 15-20 pills a day and suffering forever" game with me. I know I'm young, and I know that most twenty somethings aren't exactly eager to get surgery. I'm also not eager to never have a life due to this illness. I just want someone to understand that. Hopefully, this new GI will.

The Reality of Dreams (and IBD)

     I just celebrated my four-year "anniversary" of being diagnosed with IBD. (In all likelihood, I've had it for at least seven years, but I was misdiagnosed for a long time.) I could write about fifteen different entries on the various problems I've had with this disease, but today I'm focusing on one that's been more of an issue lately. That issue is my dreams.

     I don't know that I would necessarily classify my dreams as nightmares. Nightmares, when I had them pre-IBD, never felt like this. They were always about tragedies befalling people I loved, or ridiculous things (like the summer before eighth grade, when I constantly dreamed about losing all of my teeth. Maybe that was some foreshadowing of my future IBD-related dental issues.)

     The worst thing about these dreams is that they're real. Not that they are actually occurring at that given moment, of course; I have no surprise when I wake up in my bed. But the people are real. I have been to those places. Situations are the same, or worse. The worst part is that I know that they are dreams. I know this has already happened, or could never happen that way. The people are gone. I can't go to those places anymore. But my mind takes me there every night to remind me of what I have lost.

     So it's come to this point: the point where I hold off on sleep. The point where I research anything that will make my dreams go away entirely, as ridiculous as that may seem. Some would call this nothing, but this is only one of the many complications of IBD I struggle with, and it bleeds over into every other aspect of my life. I know that it will go away eventually, just like it did after my last flare. I know that it won't always be this way.

     But until then, I fight my own mind every night.
    

I am a work in progress.

     It's hard measuring up in this world when you have an invisible illness. Not all of us can compare ourselves in the same ways; there are things we've lost and things we may never have at all. Sometimes we seem like regular people and then end up bedridden. I struggled with this for years. Let's just say that chronic illness and perfectionism don't go together very well.

     The world expects a lot from us. It expects us to always be in control of ourselves; our looks, our thoughts, our actions. We must always be striving to reach something greater, no matter what we have previously accomplished. Those standards are exhausting for anyone. Try having a chronic illness on top of that, and eventually, measuring yourself by these standards becomes impossible.

     Eventually, I had enough of trying to live that way. Or, more accurately, my body had enough. I'm starting to learn that when you lose almost everything healthy people define themselves by, you learn what really matters. I'm not healthy, but I'm alive. I've lost friends, but I've found some of the best friends I could ever imagine in the chronic illness community. I may not impress or inspire anyone else, but I impress and inspire myself every single day. And that is enough for me.