Going with my Gut: A Journey to Wellness

Being at my parents house is very relaxing and I'm healing more each day. There are also lots of challenges including everything under the sun bathroom-related (I am keeping a running bloopers memory list!). I'm not in much pain and there is much more laughter than tears. Thank goodness for help from my parents and my visiting ostomy nurse...and naps, lots of naps!! One major plus to this stage of the operation is WAY more freedom in my my food options. Many of you know I had been on an extremely limited diet (the Specific Carbohydrate Diet) which helped keep my symptoms in check, but was a lot of work. For the last five years my diet has consisted of primarily eggs, meat, fish, vegetables, and fruit. I was not supposed to eat processed foods, even simple ones like organic tomato sauce or chicken broth because they could contain stray spices with "illegal" ingredients or illegals like sugar (did you know companies don't have to list ingredients on the nutrition

For those of you not on Facebook, I wanted to let you know that my surgery went well on Tuesday and I've been healing lots every day since. I just got discharged today an I'm staying with my amazing parents for a while to get back on my feet. There have been challenges every day, but lots of growth and new beginnings! Thanks for your ongoing encouragement and suppprt- it truly makes a big difference!! Time for a nap, I'll post more later. Happy Hanukkah and Merry Christmas!

Tomorrow's the big day and I spent some time this weekend doing some reflection, journaling, and talking to my body about what will be happening. I was told that when an organ is being removed it's a good idea to release that body part with love and gratitude for what it has provided. Here are some excerpts from my journal: Dear Colon, Thank you for 32 years of hard work. For 25 years I didn't think about you at all. We ate homemade pasta in Italy, lobster on the Cape, and s'mores by the campfire. You processed nutrients, extracted water, and eliminated waste. You were such a steady, reliable part of my daily functioning that I took you for granted. Things started to get tough in 2009. That's when your inflammation and suffering began. Since then you have been tested and tried, poked and prodded with colonoscopies, sigmoidoscopies, biopsies, pills (Lialda, 6MP, prednisone), and infusion medications (Remicade, Entyvio). We tried alternatives to Western medicin

After 6 months of no positive effects from FMT, and 7.5 years of no remission from ulcerative colitis, I have decided to have surgery. This was a big decision for me, and I feel that I have thoroughly exhausted my other treatment options. I am so grateful for all of you who helped me get to England to try to heal myself with a treatment that is not readily available in the US. I'm glad that I tried it because I would have always wondered "what if?" if I had elected surgery without exploring alternatives. I still believe that FMT is a fascinating treatment option and it has helped many people. I wonder if my results would have been different if I had tried FMT earlier in my illness or if I were able to have more regular treatments, but for now those are unsolved mysteries. There is a lot of FMT research going on now, so hopefully scientists will learn more about how it can help various diseases and it will become more accessible in the near future. As for me, I will be

Hey everyone, Today is my last day of summer vacation and it seems like a suitable time to reflect on the summer and share an update. This summer has included a lot of emotional highs and lows for me. I really treasure the fun times with family and friends these last 2 months and my goals for this school year are to smile and laugh. In my last post, I mentioned that I didn't feel health improvements from FMT yet and I was ordering additional implants from England. I planned to do 1 per week until October and then see how I was feeling. Unfortunately, this never happened. One of the biggest challenges for me this summer was that my package of frozen implants was held up (short version: FedEx failed to give my info to the FDA in a timely manner) and when I finally got it, everything had melted. This was a huge loss for my health and finances. The last 6 weeks has been an ongoing customer service nightmare in which I filed claims and fought hard for explanations and compensation

Hi all, It's been 10 weeks since I started my FMT treatments at Taymount and I wanted to give everyone an update on where I'm at. Mainly, my symptoms are pretty much the same as before I left (which is not stellar, especially considering that I'm still on steroids and whole slew of other meds and supplements). I spoke to Taymount's lovely and knowledgable Patient Liaison on the phone the other day for some guidance and she reminded me that there is so much unknown about how each individual will respond and there are no definitive timelines. This is really hard for me- the not knowing. In some ways it's still early (many people respond between 3-6 months), so it continues to be a true exercise of relaxing into the unknown and living in the present. I'm not sure how others handle living in the present and planning for the future, but for me, I'm realizing that being present in this moment can include considering the future. Instead of following my

Yesterday was a long day of travel, but last night we safely arrived back in the good ole US of A! Boston was so pretty lit up at night and my own bed was great. I'm happy to have two transition days before it's back to work on Monday. Thank you for following the blog while I was in England- it was fun and helpful for me to share my experiences. Since I need to give the process time, this will be my last entry for a while. I plan to post an update again in a few months or sooner if I have news.  Lastly, here are a few pictures from our daily life and our home away from home during the last two weeks.  Love, Steph Eggs for breakfast! Kitchen that our host let us use anytime Garden plots and the back of the house Another view of the garden This wall art at the clinic made me laugh My sticker chart (thanks mom!) A view of Hitchin from Windmill Hill A gorgeous flower shop that sells homemade beeswax candles A view of St. Mary's

I'm sitting outside enjoying the intermittent sunshine in Tish's thriving garden surrounded by bird chatter (perhaps magpies?) and the occasional distant airplane. The garden is a really peaceful place to relax, and there's even WiFi for me to blog (and for dad to play Words with Friends)! It's my last full day in Hitchin and I'm reflecting on the experience and everything that led up to being here. I just filled out a patient feedback form for Taymount and I honestly couldn't think of any suggestions. As I wrote in a thank you card to the staff, they have made me feel welcome and supported from day one, and, in a strange way, I've actually come to look forward to going to the clinic each day and chatting with the nurses and other staff. I have one last treatment tomorrow, but I will miss their humor and genuine compassion. Of course, I'm looking forward to not having treatments for a while, and I'm excited to get back to my life at home. The ci

Today was our last out-of-town excursion. We'll spend tomorrow and Thursday relaxing in Hitchin before traveling home to Boston on Friday. We returned to Cambridge today to explore the city some more.  It was a really wonderful day, except that I had one episode of urgency, reminding me that there will be steps forward and back. On treatment days there is always a goal to retain the implant for as long as possible- at least 1 hour if possible- and sometimes it's longer than others. The part that was scary was that we were walking around the Cambridge Botanic Garden and didn't know where the nearest restroom was and somehow managed to walk through a zillion meandering paths instead. Dad spotted a helpful gardener who pointed us in the right direction and all was good just in the nick of time. Ugh- I hate those moments.  The rest of the day was lovely! We spent two hours at the Botanic Garden, then went to the Polar Exploration Museum, did some wandering and shopping,

Just got back from a wonderful day in London! I came to England for medical tourism, but I feel so fortunate that I have been able to enjoy some regular tourism too. In fact, today was my best health day in a long time (high energy, no bloating, etc.). It's an amazing feeling to be able to walk around freely without constantly memorizing WC locations (well, to be honest, I will probably always be on the lookout for bathrooms, but at least I might not need to use them all). I took a zillion pictures, so here are some highlights! Enjoy! Also, check out facebook for Hogwarts photos! My life is now complete.   Trying to remember to stay to the left! The Tube View from the Double Decker Bus Trafalgar Square London Street near Trafalgar Sq & taxi cab The Queen's guard St. James Park I could have watched these ducklings alllll day!!! Nice view of the city from St. James park Parliament Parliament & Big Ben Westminster Abbey

I am halfway through my treatments at Taymount (5 down, 5 to go) and it's really nice having a lazy day. I slept in this morning, had a late breakfast with my dad and Tish (airbnb host). It's really cold here today- in the 40s and rainy (a few snowflakes were falling earlier!). Perfect day to be cozy and take it slow- just some yoga and reading (it is so nice to have time and energy to read!). This afternoon, we are going to go to the movies in the next town over.  Tomorrow will be a busier day and we're aiming to go to London since it's supposed to be sunnier and dry! Send me a message if you have any recommendations of must-see attractions! I've been feeling good- energy levels are high and no bad side effects from treatments. For now it is like I am planting the seeds and I will need to wait for a long time to see them grow. I have actually noticed some small positive changes, but I don't know if they are random or related. I need to have patience and try n

My first 3 treatments have gone very well! The first two days I took a nap in the afternoon, but today the sun was shining and we decided to go to Cambridge for the afternoon. Now it's almost 9pm and I'm worn out, but tomorrow will be a low key, local day. The town we are staying in is a bustling little village with lots of independent shops, and it's just right for our stay. However, it was neat to see the larger city of Cambridge with a lot more people, stores, culture, etc. I'm glad I'm able to enjoy some sightseeing in between treatments. Here are some pictures from our day trip! Market Center Everyone cycles here! Eagle- the pub where Watson & Crick announced the discovery of DNA The iconic Kings College Inside Kings Chapel, trying to blend into the senior citizen bus tour to learn about the Rubens painting  Punting along the River Cam Typical scene in Cambridge: the mail box, the telephone booth, the bicycle