First Week Home Post-SMAS Surgery

April 12, 2026

If you need a quick catch-up you can skim CaringBridge first.

Coming Home: Comfort and Reality

I have been home almost a week now and it has come with many challenges, but also lots of comfort. I, of course, enjoy being able to sleep in my own bed. But even more than that, being surrounded by my family is the ultimate comfort.

Ben's family came for a visit and belated Easter meal the following weekend.

Managing Pain and Medication Changes

I am still dealing with a lot of pain. When I was in the hospital, I was on a lot of medication and since being out that has been decreased significantly. So I am trying to find a better middle ground through trial and error. There is also a nervous system and mast cell component that has added extra body aches on top of surgical pain along with my digestion working to figuring itself out. Since there is still a lot of adjusting happening and my body isn't real happy with me, I'm still on TPN.

Healing Is Not Linear

One of the difficult parts is that since my surgery was over a month ago, people want to hear that I am doing a lot better. Healing is definitely not linear and as we all know, I’ve only recently gotten out of the hospital, had to switch to oral meds, try to eat more food throughout the day, I’m naturally moving around more, traveled back home, and adjusting to being with my family again. I don’t mean that in a negative way at all, but I am a mother and there’s nothing more my kids want than to spend as much time with me as they can. Especially after being separated for so long. So I need to save as much energy as I can for them.

Inside My Surgery (Simple Explanation)

The surgery I went through entailed handling and moving a large portion of my digestive system. Due to my connective tissue disorder it also required stitching some of my intestines to the right side of my abdominal wall so the duodenum doesn’t move back and get compressed again. This surgery was designed to have the least disruption to the duodenum as possible since a large portion of our nutrients are absorbed there. There is likely some permanent damage in that respect, but it will just take a lot of time. My body has compensated and worked so hard all these years. It’s honestly miraculous to me I got this far. It didn’t look pretty in these last years, but I kept on! So right now I’m doing my best to give myself lots of rest, patience, grace, and nurturing. And yes, part of me wants to just go galavant somewhere and start a project or maybe even just be able to unpack my suitcase. Patience, young grasshopper!

Giving Myself Grace

There have been some pesky things I have to do, such as paperwork, making phone calls and writing emails. Disability required some immediate paperwork completion. I’m trying to hold off on anything that isn’t essential right now. My top priority (beyond the mandatory paperwork) is spending time with my family and connecting with friends (healing/resting is also a given). Even that exhausts me more than I’d like it to. But I try to give myself grace or at least remind myself to! My healing timeline got derailed with the second admission, so my brain is still trying to reconcile the fact that even though I'm 6 weeks out, my body is somewhere around the 2-3 week mark. Well and frankly there just isn't a rigid timeline since we are all so unique. But since I had that glimpse with my first discharge it changes things for me mentally. Though one positive of that is I know that better than this is possible! It's just hard when people ask how I'm doing and so badly want to hear that I'm better. There are a lot of nuances when it comes to better, especially when I have other health conditions that try to take the stage ;)

Tools That Help: My Medication System

Mom has come over twice this week to help me with things that needed to get done. Mission one was to set up my medication machine. Its name is Hero, which is very fitting (HSA/FSA Eligible). It has an app that allows you to set all of your meds to specific dispense times and also allows as needed dispenses for meds that require that. Mom and Ben also have the app so that they can assist if needed and if for some reason something would happen to me, they could take over control of it. And yes, this was mostly designed for elderly people. One of the highlights of having it is that Violet and Theodore can bring me my meds. Now don’t worry there are passcode settings for dispensing if needed. But they just take the cup and bring it to me, which is very helpful 1st thing in the morning. I think it also gives them autonomy to be helpful if they want. This is not something that we have asked of them, but something that they have learned to observe and find ways themselves to take on responsibility. We have had numerous discussions about time management and how to carve out space for fun while also taking care of necessary responsibilities.

My Kids: Resilience and Emotional Growth

My children have had to go through more in their short life than most other children their age, because of that they have built resiliency and emotional intelligence they maybe wouldn’t have otherwise. It obviously was not a choice, but we are doing the best we can to navigate together as a family (it’s messy at times). This last surgery brought out more transparency on how hard it is for them. They have been able to express more of their emotions and share some of their thoughts and feelings with us. Even though it is so hard to watch and hear, it makes me so happy that they are able to do that. It will serve them well in life. It has also allowed them to find ways that work best for them to work through their emotions and that is something that even we as adults don’t often have figured out quite yet. I can assure you that I am still learning every day as I go. The school counselors are very familiar with our family and some of the things we have gone through. I am forever grateful for the school staff for being so understanding and looking out for my children. The kids mostly keep things to themselves in that setting, but I still appreciate that there are some extra eyes making sure they are OK. I for one am very well-versed in those emotions that hit out of nowhere. This week I have perfected crying sporadically as I share whatever it is that’s being discussed. And I’m just letting it happen and be what it is. There is so much that I haven’t been able to process for various reasons. So this is just as much part of the healing journey.

Violet has taken a knack to writing how she feels and expressing herself. I am so glad that she has found something to help her express what’s going on in her mind and has found another place to share those thoughts. I think someday she will be able to share more verbally, but for now there is comfort knowing she does have an outlet that feels safe to her. Theodore has worked so hard on understanding emotions and how to handle them. It’s a continuous work in progress for all of us I am just glad that we are all able to help each other through it. Even Otis has found ways to express himself. Just in the last month, we can tell he is able to understand things a little bit more which greatly helps him process and feel a little less confused and upset with me. I’ll see if I can attach a clip of him saying “hospital”, because you can’t deny that it’s precious even if it is sad.

The Power of Support Systems

I truly can’t think my support system enough. I have witnessed those who do not have what I do, and it breaks my heart. I wish so badly that I could do more for those that don’t have a support system. I am already brainstorming ideas for the future and how that could be done. And the best part is some of the new friends I met in Virginia were quick to join me in sharing ideas. Once we get farther into healing, I do think we will be able to make an impact. In many ways I feel like my life has been flipped upside down these last few years. I try my best to keep my head up and put 2 feet on the ground and move forward each day. Even though I don’t know where life is going to take me.

Gratitude From the Heart

So again, thank you to everyone who keeps showing up whether it’s sending cards, sharing humor, helping with funds, food and caregiving. The voice notes that await me each day, the flowers that show up to make me smile, and every time I see the sun and feel its warmth on my face. There have also been angels making us food, cleaning, organizing, chauffeuring my children and likely me now that I am back home, sending thoughtful gifts, and taking time out of your day to pray and think of me. 

Raising Awareness

If there is one other thing that I could ask you all to do, it’s for all of you to continue to listen and spread awareness of all of these health conditions that are largely undiagnosed and have little research. My dear friend recently shared a story about how a stranger shared with her that they had EDS. She took that moment to share what she knew and listen to their own story. I have no doubt that it made their day and for a moment made them feel a little bit lighter for feeling seen and heard. That is a gift that you can give to so many that takes little effort in time to do. Every time someone shares a story like this with me, it truly means the world. If nothing else, I hope I’m making small little impacts that have trickled far and wide because of all of you that keep showing up here to read and listen to what I have to say.

I will, of course, also accept help if a friend wants to stop by and help me with some small tasks and we can catch up with each other about life at the same time. But you must be understanding if I decide to just stop and lay on the floor for a while. :)

Instagram Accounts to follow for great information: Cortdoesscience  lara.bloom  DrErinNance  DrZacSpiritos  DrCutchins  EndoNaturopath

TPN Life & Small Progress Wins

Huge shout out to mom and Ben who continue to help me with TPN set up. Today I get to try going from 24hr feeds at half rate to 18hr feeds. This will allow me to move around backpack free when the kids are home. Having the backpack has added to body soreness since lying in the hospital bed only contributed to more deconditioning. So in a way it’s good, but will help not having it be the full day. I can assure you that getting tangled and stepping on your own tube is something you don’t forget. That pain stays with you! Haha

All my love,

Ash