Going with my Gut: A Journey to Wellness

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