Five Reasons Why I Didn't Get a J-pouch

     One of the first things I was told about when I found out I had ulcerative colitis was a J-pouch. All of the literature I received on treatments for UC mentioned the J-pouch, as if getting one was like snapping your fingers and being "normal" again. "No one will even know it's there!" "You can go to the bathroom 'normally.'" "You'll be 'cured' and back to your old self!" Years later, I knew pretty darn well that there was nothing easy about getting a J-pouch or adjusting to one, thanks to my lovely friends who live with one. However, J-pouch surgery is still considered the "typical" surgery for most people with UC. So why didn't I get one?

1. We weren't sure what type of IBD I had. As I said in a previous entry, I had at various times been diagnosed with ulcerative colitis or indeterminate colitis. Total proctocolectomy with end ileostomy (what I decided to get) would have worked for either and wouldn't have left me with the risk of recurring disease in a J-pouch.

2. Multiple surgeries. When my surgeon told me that he would most likely be able to take my colon, rectum and anus in a single surgery, I was on board. I've lost too much time being sick and didn't want to lose any more. I also didn't want to undergo the multiple surgeries that a J-pouch requires and have my diseased rectum inside me for any longer.

3. I just wanted to feel better. See above. Also, while there are many people who are happy with their J-pouches, I also know many people who struggle with theirs. Pouchitis, cuffitis, finding out they actually had Crohn's, incontinence issues, failure that requires going back to an ostomy... not worth the risk for me personally.

4. Gut feelings. While having IBD has often made me wary about trusting my gut (ha!), I had a feeling that a permanent ileostomy was right for me. It wasn't a case of "well, I'm not really sure which surgery I want," it was the awareness that there was no other right option for me. It's important to be aware of all your options, but once you are, you really need to trust yourself.

5. I didn't want one. I've definitely gotten the reaction of "why wouldn't you try a J-pouch!?" The consensus of people who know very little about IBD seems to be that a young woman should care more about how she looks than what she wants or how she feels. I would most likely have been very unhappy with a J-pouch, as not only could I possibly have had physical complications, I didn't want one. I certainly wasn't going to make a permanent, lifelong decision based on anything other than what I and my surgeon decided would be best for me. Also, "try a J-pouch" and have to undergo even more surgeries if it didn't work!? No thank you!

     This certainly wasn't written to dissuade anyone from getting a J-pouch. That's a decision that needs to be made with your surgeon and doctor when the time comes. However, getting a permanent ileostomy was the right decision for me, and I'm very happy with that decision so far.

:) Sarah

Surgery and everything after

     It's currently about three and a half weeks post-surgery. Hard to believe it's been so long. My plan is to use this post to update you about my surgery and recovery, but unlike so many of the ostomy blogs I read, I really don't remember all that much. Maybe I was more medicated than some of you! Anyway, hopefully this fills you in on what's going on with me and my new "companion."

     Since I don't remember everything that happened in order (and quite frankly don't want to write about everything I do remember), I'm going to list the most important things I'd like to share.


1. Yes, I was in the hospital over Christmas. A lot of people were horrified by this! It wasn't that bad. Santa and carolers came to visit my wing and gave me a beautiful poinsettia. I also had a visit from a wonderful IBD friend that day. (Although the failed catheterization attempt later in the day was one of the most physically and emotionally painful experiences of my life, but hey, who said IBD was all kittens and roses...)

2. The "prep" for this surgery confirmed for me that I made the right choice. I have heard that not everyone undergoes the same prep for a proctocolectomy, but mine made me want to die. Seriously. I had to take 12 pills (two different antibiotics) and drink a TON of Gatorade/Miralax. It was like colonoscopy prep times a million. Yes, I puked. I spent a lot of time on the bathroom floor. And I realized that I will never have to prep for a colon-related procedure again, which was the one thing that kept me from jumping from the hotel window and taking out a random Philadelphian.

3. No matter how ready you think you are for surgery, at some point during recovery you're going to lose it. My first meltdown came in the hospital after the horrible catheterization incident (aren't you just dying to hear the full story?) I was so upset the nurses ended up giving me Ativan to calm me down. The meltdown subsided temporarily, but started up again later when I started bleeding in a very special place. Bleeding and passing some sort of tissue, mind you. It was terrifying. Apparently something may have been bumped or knocked around during surgery, the medical staff said, which really helped my mindset. Oh, and a night or two later when my bag leaked twice during the night, I definitely panicked.

4. You may have some unusual side effects that you weren't warned about. I guess the random tissue passing could fall under this one as well, but speaking of tissues... My body stopped being able to sneeze for about three weeks post-surgery. Seriously. Every time I would start to sneeze, my body would internalize it, as if it was sucking the sneeze in. I don't know if it was my body's way of trying to protect itself from any further pain, but it sure was interesting.

5. Your biopsy report will likely be very, very interesting. As my surgeon told me before the procedure, there are some things you really can't see until you're "in there"... or until the offending parts are out of your body and being studied carefully. Prior to my surgery, my diagnosis had floated between ulcerative colitis and indeterminate colitis. This is thanks mainly to my charming rectum, which decided to not be involved at first (even though I technically had pancolitis) and then became my worst part. The fact that my rectum was so bad was one of several reasons why I decided not to try a Jpouch, which I may discuss more in a future post. But my biopsy showed that due to some unexpected factors, a Jpouch very well could have been problematic for me. It also showed that my appendix was affected as well-- who knew!? I did turn out to have UC, but it turned out my particular case was a little unusual.

6. Ostomy nurses will become your best friends. Although I was helped by a lot of wonderful nurses during and after my hospital stay, there was no one more helpful than my surgery clinic's ostomy nurse. I had a ton of problems with leakage and skin irritation right after surgery. She helped me in the hospital, via email while I was at home, and during an office appointment last week. I'm now trying a new system and haven't leaked at all in the past few days (fingers crossed...)

7. Your house will start to look like a medical supply store. Not only do I have the supplies I left the hospital with, I have my first order of supplies (which came in a massive box) and two starter kits from various companies. Eventually this will settle down, but right now I'm still seeing what works and what doesn't.

8. Even while recovering, I feel a million times better than I did prior to surgery. Seriously.

9. Don't be offended if people act like your surgery is a bad thing. While most of the people who know me understand why this surgery was actually necessary and a step in the right direction, most people who don't know much about it will think that having to get an ostomy is a disaster or something that needs to be kept quiet. Don't take it personally.

10. This surgery was the best thing I've ever done in my life. Not necessarily the experience itself, which wasn't anywhere near as fun as, say, a beach vacation or baseball game... but the end result. I'm starting to feel like myself again. Years of struggling with this disease made me feel like I had been replaced with a shell who vaguely resembled me, but I'm back now.


     If you have any questions about my surgery experience, feel free to leave me a comment... unless you're asking about the catheter. Give me a few years to deal with that. ;) Sarah  

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.