Going with my Gut: A Journey to Wellness

12/24/16 at my parents' house- just left the hospital  And this is me today in my apartment (12/24/17) No more steroid moonface! Facebook reminded me that a year ago today, I had just been discharged from the hospital after a successful first jpouch surgery. The picture above (on the left) is from exactly one year ago today. I was overjoyed to be home and both hopeful and nervous about the future. I have come a long way since one year ago and I thought it would be helpful to recap my biggest take aways from this year.  Always remember that you deserve excellent care. This process is long and hard. Progress isn't linear. It's ok to be sad and frustrated sometimes.  Ways to feel better when you're feeling down:  Make a plan (even if the plan is "do nothing" and check back with someone about it at a later, specified date)  Spend time with family/friends (in person or via facetime/phone)  Go outside Remember during times of bette

I was raised to know that I was worthy of love and respect no matter what, but like many of us, somewhere along the line those core beliefs got buried under layers of inadequacy and fear. For much of my life I have measured my own worthiness based on how other people saw me. If someone complimented me or if I got a good grade or if I was accommodating, I felt valued. It felt good and I was really good at it. However, the downfall of being a people pleaser is that you lose sight of what you want and you don't get your needs met. I've done a lot of work to peel back those heavy layers of inadequacy and get back to the core where I can confidently say that my imperfect self is worthy of love and belonging. Still, it's a work in progress and sometimes interactions with others can bring me right back to that insecure girl who lives inside of me. This week I had an appointment with one of my doctors which sent me right back to that place of inadequacy. As per usual with this

*disclaimer: this post mentions bodily functions and the like, so you've been warned :) Summary (for all you busy folks): I was in the hospital last Thursday to Tuesday with a small intestine blockage. It hurt like hell. I'm better now and going back to work tomorrow.  On Thursday morning I woke up for work and I didn't feel right. I was nauseous and a little light-headed, so I called my dad to come over to monitor me. Later I learned that these symptoms were probably early signs of a blockage, but I didn't know at the time. I rested and ate and we even went on a walk- it was a really pleasantly warm fall day. However, after lunch I developed belly pain and I realized I hadn't gone #2 all day (very unusual for me). I tried to stay calm and drink lots of water and stretch. The pain just kept getting worse. I knew from past experience that this might be a blockage and that blockages can take time to resolve, so I tried to muscle through the pain and hope

I kind of miss crumpling up a piece of writing and chucking it at a waste paper basket. Hitting the delete button is much less satisfying and leaves me with nothing to show for my writing efforts. Guys, I've sat down and tried to draft a blog post a bunch of times since my last post in July, but I couldn't get going.  It's hard to air your dirty laundry to your broad circle of family and friends and acquaintances for so many reasons - mainly it's hard for me because I don't like continually give negative news to people who really care about my well being. (and honestly, even though I am eternally grateful, it's even harder to give baskets of my actual dirty laundry to my parents and close friends and realize that I can't take care of my basic needs on my own right now) The reason I keep sharing is to try to educate people about chronic illness and to keep folks who care about me in the loop. Plus, I'd rather be real with everyone even if my news can

I'm trying a different format in this post because sometimes life is a series of moments and they are connected simply because they are your story. My blog looks different too - it was time for a change :) Here are some scenes since my last update 6 weeks ago, in somewhat chronological order... SCENE: Watching the sun set on the porch in Wellfleet. Purples, pinks, and yellows. Enjoying a summer night with wet hair and a sweatshirt. SCENE: Kayaking on the Charles for Fathers Day. Risking no bathroom in close proximity. Arm muscles aching. A great blue heron flying overhead. Feeling weak and strong at the same time. SCENE: Returning to my workplace after 6 months away for the students' graduation ceremony and feeling flooded with happiness. Remembering all the reasons I love my job and getting excited to teach in the fall. SCENE: First beach trip/long drive. Part A: laughing so hard with my sister at Crane's beach  Part B: experiencing wonder while wandering around

A little update since it feels like a lifetime since I last wrote! After my last posting I had office visits with my surgeon and GI doctor. I shared my many symptoms and I got validation that what I had been experiencing was not normal. The next step was to do a pouchoscopy (similar to a colonoscopy) to see what was going on inside. If any of you are ever in a similar position (and I hope you will never be!), I would recommend asking for an alternative to the saline enema...talk about rubbing salt in the wound. Youch!! Anyway, the pouchoscopy revealed interesting and reassuring results: there was no inflammation in the pouch (meaning, no infections) and no inflammation higher up in the small intestine (so, no Crohn's Disease). It was exciting! Woohoo! But, then what was wrong with me??? The findings from the pouchoscopy narrowed down the problem to "pouch management." When the j-pouch is created from your small intestine it starts out with a small capacity and over time,

Hey friends, I haven't written in a while, so I thought I'd post a little update now that I've hit the 2 month mark. I wish I had lots of happy progress to share, but the reality is that post-surgery life has been really, really hard. I will share some of what I'm going through, but I don't have a lot of explanations as to why these things are happening because I'm waiting to talk to my doctors next week. In the meantime they have been giving me medications, and I've just been blindly taking them because I need relief. I have so many questions to ask. Anyway, here's what's been happening on my end (oh bad pun...). The frequency of my BMs have not gone down to the expected levels for a person 2 months out from surgery. If I stay away from certain foods (until we meet again dear chocolate, tomato sauce, spicy cuisine), many of my days are manageable. Well, to be more precise, they're partly manageable because I modify my lifestyle. I basically st

It's just over two weeks since surgery and some people have been asking how I'm doing. It's actually a hard question to answer because 1. It's a lot of gross bathroom talk 2. My mood changes rapidly some days 3. It's not easy to see day to day progress. So here's my best attempt to explain how I'm doing that's more in depth than my vague "getting there..." text reply. (And by the way, it's fine to keep asking me this question! It's a good question!) This is a different type of recovery compared to my operation in December. In December, things were dramatic: waking up with an ostomy! Tasting new foods! Being out of work! Also, progress was measurable and quick: reducing steroids, increasing walking distance, gaining strength. This surgery brought me down to the basics, I had to relearn how to walk, eat, and go to the bathroom.  This time around is more subtle. I have good strength and my body feels healthy most of the time. I ha

For friends and family who are not on Facebook, I just wanted to let you know that I got discharged from the hospital Saturday morning and I'm spending some time at my parents' place for now. My surgery went smoothly and recovery is going as well as to be expected. Thanks again for your continued healing vibes and words of encouragement and support!

It's finally here! My reconnection surgery is tomorrow! I never thought I would be this excited about going to the hospital, but I am r.e.a.d.y. The last couple of weeks have been particularly trying, and my countdown to March 21 has helped me stay focused. If you'd like to send positive thoughts and wishes around 1:30pm, I'd definitely appreciate the love! Tomorrow's surgery is a less invasive procedure than the first one, and once again I'll be at the hospital for a few days and then spend some time at my parents' place (thank goodness for family help!). Even though it's initially an easier recovery from surgery, I'm not so naive to think everything will be peachy keen. From what I've heard, it takes 6-12 months to fully adjust to the new plumbing and the first 2 months are the hardest. This is definitely going to require endless Patience and Compassion, but we have all been good friends for a while now :) I'm not looking forward to accidents

I have distinct memories about my life one year ago. One year ago in January I was on a train to NYC midweek trying to get into a Fecal Microbiota Transplant (FMT) clinical trial- it turned out to be poorly run and not a good match for my needs, so I didn't participate. One year ago in February I visited my parents in Florida. On my second day at the beach instead of adopting the "Sanibel Stoop" (seashell collector position) or watching the pairs of dolphins play, I whipped out a printout of the detailed medical option flowchart I had been obsessively working on and asked my parents to help me work through my options. I was sick and feeling desperate. One year ago in March I was low energy, not sleeping well, stressed at work, and spending my free time cooking SCD-legal meals since that's all my gut could tolerate. Despite being on a rainbow assortment of medications, herbal supplements, and vitamins, I was suffering on a daily basis. And then, exactly one ye

Some happy news first! I had my pouchogram yesterday to "determine the integrity" of my J-Pouch. It's basically a short procedure where they take a lot of x-rays of your J-Pouch to see if there are any leaks (you wouldn't want poo escaping from it's designated pathways and swimming around your body!). The x-rays showed that my J-Pouch is leak-free and that means I'm another step closer to reconnection surgery! March 21 is my surgery date if all continues to go well. Wahoo! This next part is about my ostomy pouch (external, covers the stoma), not to be confused with the J-Pouch (internal reservoir made of my small intestine). I enjoyed a nice 2 week stretch without any ostomy pouch leaks, but, unfortunately, I've had several leaky incidents in the last week. It's really the grossest thing and if anyone's interested, I'm happy to share the details with you, but I'll spare you all right now :) The leaks are especially frustrating because I d

It's been a little while since I last updated and I have some positive milestones to share. Hopefully they will brighten your day since we are all consuming a lot of negative news these days. Happy things: 1. I am medicine-free! This means I finished my steroid taper!! I had been on Prednisone for the last 2+ years and would flare every time I tried to taper. Being off steroids is very exciting news for my adrenal glands, my bone density, my mood, my moon face, and my sleep. This is also a necessary prereq for my next surgery, so I'm getting one step closer to reconnecting.  2. I have been discharged from visiting nurse services. It was actually a little sad to get discharged since I really liked my ostomy nurse, but now I have all the tools and confidence I need. It feels a little bit like I graduated from an ostomy training program.  3. I haven't had a Lilo leakage in the last week! I'm always a little on edge, ready to deal with a leak, but I hope that I won

Just a short post to say that my virus is finally going away! I have more energy and feel much more like myself. Now I'm back to dealing with leaking pouches and skin irritation, but I'd rather deal with that than a bad head cold or a twisted bowel!  I've decided that I'm ready to move back to my apartment in Newton, so I'm planning to move next weekend! True sign of feeling better is needing space from your family ;-) More updates later... xo Steph

I was going to wait to write a more upbeat blog post, but I realized it's okay to share the difficult stuff while it's happening and maybe it will help to get a little extra TLC from everyone! I was discharged from the hospital on Saturday and have been steadily recovering from surgery at my parents' house. At first when I arrived I was confronted with my new reality-- I was back home, but with different capabilities.  For instance, it was frustrating to have a hard time sitting up or getting comfortable to fall asleep when I had mastered those things before my unplanned hospitalization. Fortunately, each day I have been regaining some of my strength. I needed some powerful pain meds for a couple of days, but now I'm down to Tylenol. My belly is no longer distended and the lap sites seem to be healing just fine. I thought the hospitalization was a trying situation, but this week has continued to challenge me. First, I had a partial food blockage. On Tuesday I began

The last three weeks have had challenges, but overall I felt like I was on a positive trajectory. This week I hit a bump in the road and had to have emergency surgery due to a medical complication. The short story is that I'm doing much better now, and will likely go home from the hospital this weekend, but you can read more of the long version below. On Wednesday it felt like spring, so I laced up my sneakers and went for a nice, muddy walk around Hall's pond. This was probably the most "normal" I'd felt in a few weeks- walking outside by myself, taking photos of nature, and listening to podcasts! When I got home I ate lunch and that's when the terrible stomach pains began. I'd heard about people having gas pains, and I thought that must be it, so I started walking around the apartment, marching up and down the stairs in the hallway, and doing some happy baby yoga poses to relieve the gas. My dad encouraged me to call the ostomy nurse and she added that

Note: I'm doing my best to keep down the gross factor in these posts, but this one might not be one to read during a lunch break! I had my first post-surgery follow up doctor's appointment yesterday and I got a good report! The staff were happy with the quality and quantity of my poo and I don't have to measure the amount anymore! This was not my favorite task and I feel like I'm moving up in the world! I'm also slowly gaining some weight back (maybe due to my amazing food options, ha), so that is good too.  My biggest challenges so far have been some peeing issues (this is improving, but more on that another day) and irritation around my stoma (ostomy). A stoma is "an opening on the surface of the abdomen which has been surgically created to divert the flow of feces or urine," and if you want to know more this website has very easy to understand information (without gross pictures!). I have a temporary ileostomy, so basically a part of my sm