It’s been a few years since I’ve updated this blog on how Ashley is doing since her FMT almost 7 years ago (it will be 7 years in April). Ashley has been living in Hawaii, on the big island, for about 5 years now. She believed that the abundance of really fresh fruits and veggies, the mild climate and the “Island Time” would be good for her stress and lifestyle. Well, she’s still had stress, because things are expensive in Hawaii, but her gut has held strong! She also decided to give up anything with gluten. She didn’t have a true allergy to it, but her gut did react badly to it. She was able to reduce her flares significantly by eating a gluten free diet. This makes sense to me, if her gut was leaky, as we suspect it was, gluten would be awful for it!
Ashley has not had a full blown flare since her FMT Booster and giving up gluten about 6 years ago.
We received the BEST phone call right around Christmas, from Ashley. She had gone to a party and ate something that she thought was gluten free. When her friend told her that it was NOT gluten free, she had a mild panic and braced herself for the major flare she knew was coming. Only, it didn’t come. She went out a few days later with a mission to test her gut. She did not check with me first, I would have told her no. She went to Burger King and ordered a Whopper (she said it was the worst thing she could think of to put into her gut). Again, NO FLARE!
She’s eating gluten again with no response from the gut! This is a major indication of healing!
It has now been about 3 weeks and Ashley is eating everything again. Especially bread, pizza, buns, all the things she’s really missed. She has had no reaction at all. We are working under the assumption that the FMT and diet change gave her body the tools it needed to heal and we are so over the moon! We are hopeful that even the small twinges she can occasionally get from stress will also go the way of the gluten free with more time. This has been a major success story for us and we are so very excited about it. Thank you for following our journey and best of luck to you, on yours!
I am a planner by nature. I can also be very frugal when I want or need to be. So when one of my dearest friends told me that she was getting married at the courthouse, I begged her to let me plan a wedding for her instead. Lori and I have known each other for nearly 20 years now. She’s been my mentor, my manager and my friend. She’s fought several different flavors of cancer and tumors in these 20 years. So much so, that she has a hefty medical line in her monthly budget to pay off horrendously large medical bills (don’t get me started on U.S. medical care), hence the original plan to just get married at the courthouse. I needed a project and something positive to focus on and she very much deserved a wedding. I was over the moon when she gave me the green light.
I had just 4 weeks to plan a wedding that looked expensive and catered to 25 guests with literally $0.00 budget. The challenge was exhilarating and the results are something I’ll always be proud of. The whole story follows.
When I was first given the opportunity to plan this wedding, I felt really overwhelmed, but I also knew that with a little help I could totally pull it off. I gave myself a $100 budget (this was my gift to her and her fiance) and then I started by reaching out to my friends and family who had talents I could utilize. My husband is an ordained minister, so we had the “clergy” set. My sister runs For The Love of Jo’s Belly, which is a cake decorating business, so I asked her if she’d donate the cake and she was more than happy to help. One of my best friends from way back in Middle School used to work for a florist, so I asked her if she’d design the bouquets and wedding flowers. A good friend at work does a lot of videography, and Lori used to be his manager, so I asked him if he’d videotape the ceremony for us. Lori and her fiance had just bought a home together and lucky for us, it was the perfect venue for the wedding. Lastly, the bride-to-be made lasagna, bread and salad to feed the small guest list. This took care of 6 very important pieces!
The secret to my success, however, was community. Not just those I know, who were so generous with their time and talents, but also my community at large. If you aren’t familiar with the Buy Nothing Project, I suggest you check it out. Buy Nothing is an organization that is volunteer run in just about every city across the United States. It’s considered a “Gifting Community”. The idea behind it is that instead of throwing out that baseball mitt, outgrown children’s clothing, coffee pot, computer, enter any other item here, you instead post it on the site (which is typically a facebook page) and offer it to your community. This keeps items out of the landfills and promotes reuse, recycle, upcycle. In my hometown, our volunteers on the Buy Nothing project had some sort of falling out, so you’ll see me refer to Green Bees instead of Buy Nothing, but it’s the same concept.
I posted on the Green Bees page with an ISO (In Search Of) and gave a brief explanation of the situation (why I was throwing the wedding) and asked for some specific items like old pallets, an easel, wood rounds, beer, wine, champagne, tea light candles and flowers and herbs (the bride wanted a lot of herbs in her bouquets) and logs to build a trellis. What happened next blew my mind. Not only did I get everything I needed, but the community started offering items I hadn’t even asked for like a calligrapher to add the words to the signs I was making from the old pallets, a photographer, Nikki Manley Photography, offered up her services for the bride getting ready through the reception, and a hair and make-up gal offered to come and get the bride ready! As time went on, my asks became more difficult to obtain and I didn’t hold much hope, but I figured it wouldn’t hurt to ask, right? We ended up with 25 chairs, 25 chair covers, mix and match china, mix and match wine glasses, silverware, so many flowers and herbs, a veil, jewelry for the bride, twine, ribbon, so much stuff! The alcohol alone was insane! We ended up with 22 bottles of wine, 8 bottles of champagne and more beer and cider than I could be bothered to count! Between community loaned and gifted items, items I had and items the bride and my other helpers had, we had very, very little to purchase.
The few things I wasn’t able to find, I purchased. I spent $35.96 buying some bouquets at Safeway to round out our herb and floral collections with some splashes of color. I spent $45.30 at Dollar Tree purchasing 30 votive candle holders, 5 vases, some ribbon and batteries. Lastly, I spent $32.13 on Ebay for 25 cloth napkins, 25 chair sashes, 6 table runners and 1 table cloth.
I am forever grateful to my community for backing me up and helping me to do something special for a very special woman in my life. For a total of $113.39 and a lot of free labor from very good friends, family, and neighbors, we were able to produce the wedding you see below.
This will be my last post unless anything changes – so I’m extremely hopeful that this is my very last post! Ashley continues to do just fine in full remission. We feel extremely fortunate that this worked for her! Ashley has also since modified her diet to include only gluten-free bread (she’s not allergic but does feel better when she avoids it), she avoids emulsifiers by making her own dressings and mayo and she avoids Carrageenan, a thickener in a lot of dairy products. While she’ll very rarely still have a day where her tummy feels off, she no longer goes into long flares that prevent her from living a normal life. She’s gone from a pale, sickly young woman with stomach cramps, diarrhea, mucus in her stool, depression, nausea, hot flashes and fatigue just to name a few, to a completely normal lifestyle with symptoms no more often or extreme than the average person might have just from virus’ or eating something off. We feel so blessed. I hope that our documenting the experience can help others in similar situations.
I am so pleased to write a very short post with a very exciting update for us! Ashley has now been in complete remission for 2.5 years. 11 months after her original FMT, she did have some symptoms that lead her to believe she was going to have another flare, but after a short 5 day “booster” FMT, she’s been completely solid (no pun intended) for the full 2.5 years. I am so thankful to the folks who were willing to share their experiences on the Sally Brown Facebook page and the doctor who helped us take the necessary precautionary steps! I would absolutely recommend this procedure to anyone who is looking down the barrel of inevitable surgery for a colostomy bag. Here’s to hoping I don’t have to write another update for another year, and that update will be similar to this one!
I am a geek, through and through. So much so, that when I heard that most of the crew of Serenity (Firefly) were going to be at the Dallas Comic Con, I immediately bought tickets, booked a flight and found a hotel. Not only did I buy tickets, but I spent a small fortune getting the coveted VIP tickets that would ensure that when I arrived, I would get the best chance of seeing the panels that my beloved celebrities would be hosting. This was not my first con, but it was the first time that I even entertained the idea of paying for photos or signatures. Ok, so I more than “entertained” the idea, I did it. Go big or go home. I bought 2 photos with Nathan Fillion, 1 photo with Jewel Staite (for my husband) and 1 photo with the nearly complete cast of Firefly (Morena Baccarin and Alan Tudyk backed out last minute). All in all, those photos cost us nearly $600 (ouch, that’s the first time I’ve actually added that up!). I rationalized this splurge by telling myself this was a ‘once in a lifetime’ opportunity (seven of the 9 together is almost unheard of) and that it would be an opportunity to meet them. Boy was I wrong (or I have a funny definition of “meet”). I don’t mean to be a Debbie Downer. I really am a very positive person and I look for the silver linings. My own misguided expectations are to blame here. Let me share my story:
Well, it’s been 1 year since our initial 10 day round of FMT and I’m happy to say that Ashley has been doing really well. We did have a minor setback last month, where after 11 strong months, she felt some of her UC symptoms returning. We’re pretty sure we can attribute them to stress, but none-the-less, they were scary enough that we did another short round of FMT (just 5 days worth). Ashley felt better immediately after the first application and has been completely back to normal since.
Well, it looks like we’ve had a minor setback. Ashley has started complaining about the beginnings of her UC symptoms returning. It’s still mild, but it’s uncomfortable enough that she’s missed a little work. She’s had stomach pain, loose stools and a mild fever. I suspect it’s the stress she’s under, but you never really know for sure with this disease.
Today we hit 4 months off of medications, post FMT! In addition to this, we’ve passed a ‘stress test’ too!
Ashley’s adventure on a sustainable living farm in Hawaii came to an abrupt end. She was under a great deal of stress as she tried to maneuver shipping all of her things home (including her car) and finding someplace to stay with only $50 in her checking account.
9 weeks! We’ve made it 9 weeks with no UC symptoms returning! It’s still far from conclusive, but we remain cautiously optimistic.
Outside of the UC symptoms, Ashley has always struggled with candida. Literally ever since she was an infant. She did let me know she’s having some issues with this again. She’s starting to take her Oregano oil again as well as some probiotics.
Candida isn’t related to UC…it’s a separate issue. Because anti-fungals are used, it won’t affect the bacteria therapy we’ve done, thank goodness. From my research, however, I understand that it can slow the healing of the UC, so we will be working to get that back under control. I suspect the increase is due to her current diet. She’s living on a sustainable farm for 6 months, having a life experience. The diet there consists of a lot of fruits and veggies, carbs and not a lot of meat. They also make their own beer. I suspect the fruit, carbs and beer at her access is probably the reason for the “uprising”.