Chronic Health Condition

This may sound crazy considering I chose to remove my stomach over 3 years ago.  But over the last several months I am accepting the idea/fact that I have a chronic health condition.  Let me explain bit.

Early March, I flew back to Maryland for my 3 year post-gastrectomy follow up appointment.  Leading up to this I was feeling great.  Good energy.  Maintaining weight.  Hair growing back.  So many good things. At these appointments they draw labs for so many different nutritional things.  One of them being iron levels.  For those of us without a stomach iron is not as easily absorbed.  Our intestines are routed differently.  When they remove the stomach they also do something called a Roux-en-y.  It's very common in bariatric surgeries as well.  Here's a graphic showing the difference in anatomy of somebody with a stomach vs somebody without.  Anyway, when they do the roux-en-y, the duodenum (the first part of your intestine) is routed a different way to stay connected to your common bile duct among other things.  To allow your liver, gallbladder, and pancreas to still do their job.

Image from https://www.nexussurgical.sg/upper-gastrointestinal-surgery/stomach-cancer/

Well, the duodenum is responsible for a lot of our iron absorption.  Now that my duodenum is re-routed, my food and supplements do no pass through it.  Making it a little challenging to absorb iron.  So the first 3 years without a stomach, I knew it was important to be diligent with taking my iron supplements.  But I didn't fully understand why.  At least I don't remember paying much attention to it early on.  So, they checked my iron levels in March and they were the lowest they have ever been.  They gave me an iron infusion.  It was a bit of a whirlwind as I planned my trip to be less than 24 hours because I didn't want to spend any more time there than I needed to.

Let me digress for a minute.  Early on this adventure, when I first learned about my genetic mutation, I was all about making a 'vacation' out of going to Maryland and the NIH.  Why not make the most of it?  Right?  Last year, I went by myself.  Which is totally fine.  I'd gone solo before and actually kind of the enjoyed the alone time.  But it was different last year.  COVID has really changed the atmosphere.  I didn't feel safe riding the Metro alone in the evening going from the airport to my hotel.  It's hard to explain on paper, but I didn't like it.  So this year, I opted into an overnight flight so I wouldn't need to navigate the city after dark.  

Okay, so adding on an iron infusion to my already jam packed day was craziness.  Rushed to the airport, with some time to spare thank goodness.  However, I did leave my AirPods at the hospital.  DOH! Thankfully the staff is amazing and sent it Fedex that day and they arrived on my doorstep the next day. Which is insane to me.  The bummer part was I didn't have them for the 5 hour flight home.  Thank goodness I had a good book to read.  Phew!

Okay, so after needing the iron infusion it really started sinking in that I am going to be living with chronically low iron the rest of my life.  That has not been an easy pill for me to swallow.  Accepting the fact that I have a chronic health condition has not been easy.  This whole time I've been trying to be 'normal'  Trying to prove to myself and others that living without a stomach is no big deal.  People do it.  Seahorses do it.  ;)

Maybe that had been my way of coping.  Coping with the fact that I had the possibility of getting the deadly cancer my dad had.  Maybe it was the only way I could cope while making the decision to take my health into my own hands by eliminating that possibility.  Telling myself, it's no big deal.  Lots of people have done it so why can't I?  In the moment, I felt I was doing my due diligence to ask all the questions, research all the things, interview many surgeons, watch other people who had gone though the same thing.  Trying to eliminate all possibilities of future complications and such.  I mean I had list of questions for the surgeons that was a mile long.  I had it printed out on several pieces of paper.  One for each surgeon I would interview.  To make sure I was asking them all the same questions and taking notes so I could compare the pros and cons to each one.  I was very active in the CDH1 facebook group leaning as much as I possibility to be the most prepared I could be going into this new chapter.  

Sometimes, you do all of those things to prepare yourself.  But none of those things actually prepare you in all the ways.  There's always something you can't foresee.  We are constantly growing, evolving and learning new things. It's kind of like becoming a parent.  You can read all the books, take all the classes, but when that baby comes is when you really start to learn.  

So I've learned through this whole process, just do the best you know how to do today.  Try not to stress about the future.  We can plan for the future, sure.  But it's not worth our fight or flight response to get all worked up about and stress about what might happen in the future.  My dad actually always told me I worried too much.  Growing up, he would ask me "what are you thinking about?  What are you worried about?"  I always thought he was crazy.  "He doesn't know me at all".  Haha.  Looking back, he knew me better than I realized and better than I knew myself.  So now, at almost 38 years old, I'm learning how to protect that fight or flight response.  I now know how stress can so negatively impact our bodies.  And I'm not about that.  Especially chronic stress.  Even at low levels.  Anyway.

I am so unbelievably grateful to have had the opportunity to make the decision to remove my stomach.  Now I can say, I will never get the deadly cancer that killed my dad far too young.  I just wish he had had the same opportunity.  I miss him greatly.  

Do you have a chronic health condition your'e struggling with?  I'd love to chat/connect with you.  Sometimes it helps just to talk with someone who can relate a little.  You can leave a comment here, or find me on instagram @the_eo_seahorse.

Be well and take care.

Recovering

It’s been 3 weeks now since my last surgery.  It’s amazing what 3 weeks can do. 3 weeks of taking care of myself — eating, hydrating, walking, napping in the hammock, reading, gardening, much alone time, time in nature, enjoying our amazing weather, and the list goes on. It can be challenging to ‘rest’ since we are so used to the hustle and bustle that is life. But yet again I find myself learning to enjoy this quiet time and accept it. And not just accept it really.  Too embrace it.  Really lean into it.  Which is really kind of freeing and liberating.  Some days I focus a little more on the to do list while other days I just do what my heart so desires.  

When I wrote that first sentence ‘it’s been 3 weeks now since my last surgery’ I can’t help but focus on the word ‘last’.  This was the best word I could came up with to accurately and efficiently describe which surgery I was talking about. Which blows my mind. My entire life, I’ve been a pretty healthy person. Every time I would go to a new doctor it would take just a minute to tell them my very small medical history. I was so proud of never having surgery and not taking any medications.  Now when I go to a new doctor I feel I should take a sheet of paper with everything on it to make sure I don’t forget something.  I’ve now had 5 surgeries in the last 4 years.  And while I still don’t really take any medications, I need to take several supplements.  Crazy how life takes you on journeys you never would have thought you’d be on. 

Last week I had a breast biopsy.  To back track a bit, before I left for Maryland, I got a call telling me my recent mammogram showed some questionable spots so they wanted me to follow up with an ultrasound.  Once I got the ultrasound the radiologist came to talk with me.  The spots looked like cysts but because of my 42% lifetime risk of developing breast cancer, she wanted to biopsy it.  Of course I cried at first because I cry about everything.  But it didn’t take me long to agree with that advice. Better safe than sorry, right?  This is what surveillance is about. Better to catch things early rather than late.  The biopsy was super smooth.  The medical professionals were amazing. You can tell they truly care.  The radiologist called me the following day to let me know it was benign.  Literally as soon as I hung up with the radiologist, my gynecologist called me.  Yes, the one who convinced me to get genetic testing in the first place. She wanted to let me know the biopsy was benign.  Thank goodness!!  I really wasn’t concerned about it based on what they told me from the ultrasound, but it weighs on your mind a bit, ya know. 

The reason I even bring this up is because I do have the option to have a prophylactic double mastectomy.  I’ve never been opposed to it. I’ve always known my breast cancer risk is higher than the general public and that I could do reconstruction if that was the route I chose to go. But in the last year or so I’m realizing I don’t really want reconstruction, which is really difficult. I have no interest in having any foreign bodies in my body if I can help it.  And some of the options I’m not even sure are viable options for me since being so thin from the gastrectomy. So, I need to get in to see a high risk breast specialist. Just to talk everything out. Might as well have a relationship with them now just in case I need them.  So I’m thinking that’s the next step in this crazy CDH1 journey.  And right now, I just can’t even imagine having yet another surgery. Especially since breast cancer is so much better screened for than diffuse gastric cancer.  So for now, I’m choosing surveillance every 6 months and we’ll see where that takes me. 

Back to recovering. Sorry, I’m a bit all over the place. Had a virtual follow up wait my surgeon today.  That went well. He confirmed I need to take the full 8 weeks off to fully heal. My risk for incisional hernia is pretty high because they’ve now opened my belly up 3 times in the same incision.  So we discussed some exercises that are safe since I’m going a bit stir crazy here. Going to try a decent inclined short hike tomorrow and see how it goes.  It’s going to be great!

Hallelujah

Yes!  We finally get to go home!  What a week it has been. Saw the team this morning and the one lab they were keeping a close eye on is drastically better than just a couple days ago. They pulled the abdominal drain!  I’ve never had one before and wow what a weird feeling that was.  It was like my body was so relieved to have it pulled out. Like a little pressure at first. And then some more pressure. And then almost a popping feeling. The only thing I can think of to compare it to is to having a baby. All the pressure the baby is putting on all of your lady parts. And then the ring of fire right before babies head pops out. And then that feeling of release when the head makes it out. Hallelujah!  Haha. Obviously today was not near as intense, as special, or as painful as having a baby, but there you have it. Haha.  

So we’re just hanging out before we head to the airport. Taking it all in. Reflecting a bit.  

Thank you for all the kind words, words of encouragement, and all your thoughts, prayers, and positive vibes!  Our tribes are so important when we’re going through rough times and I’m so lucky to have such an amazing one.

Also, I know things could be so much worse and I am so grateful I am where I am.  And even that I’ve gone through what is a lot. It’s only going to make me stronger and live life to the fullest.  

“The best view comes after the hardest climb”

- Author unknown

Don’t know I’ve made my hardest climb in life, but I’ve definitely seen some amazing views.  ♥️ 

No Stomach No Problem? Really??

I really should have updated this on Monday. I’m so sorry I didn’t. 

After the MRCP I immediately met with my Dr. He could see what looked like to be a stone in the common bile duct. The only real option for somebody without a stomach is to have another surgery to get it out.  He reached out to some of his GI friends who do ERCPs everyday and they said ‘there is no way, that is extremely technical because of the anatomy’.  We talked for a while with him and felt a bit of a relief.  We know what’s going on. We know how to fix it. So I got on the OR schedule for Tuesday morning.  And Dr Davis said I could stay the night in the hotel as long as I was back at 7am. Which made me extremely happy. Matt and I walked back to the hotel - it’s about one and half miles. The weather was beautiful.  We got to see all sorts of flowers blooming and like I said I felt like a weight had lifted off my shoulders.  Got to the hotel, ate some dinner, took a nice shower, and went to bed. Sleep very well. Woke up before my alarm, which never happens by the way 🤣.  And was ready to go. Packed up all my stuff prepared for another night stay in the hospital. 

We got through preop farely quickly and off to the OR I went.  This procedure was anticipated to only take about 30 mins.

As I was slowly waking up in PACU I start comprehending what people are saying a little more.  I hear somebody tell me I have a foley catheter.  Then somebody mentions a drain.  As most of you know, waking up from anesthesia can be a bit of a blur. I don’t know how or when I learned the surgery took 3 1/2 hours.  Or that I will go home with the JP.  The stone was nowhere to be found....again.  So my surgeon decided to do something to prevent a stone from getting stuck in the bile duct again. So we wouldn’t be doing this again in the near future.  Thank goodness!  I’m so grateful he made some decisions while in there to be proactive and not just decide to close me up.  

But what I do remember is a feeling of overwhelming despair.  Not that surgery didn’t go as planned. Not that I would need to go home with a drain.  Not about anything from today. An overwhelming despair that this is my life. And feeling like my life will forever be a medical mystery and there’s nothing I can do about it.  I described it to Matt, my mom and my Dr that it felt like I was in a downward spiral of a tunnel that just kept getting faster and faster and there was no way out. And the rest of my life was going to be this way.  In and out of the hosptial.  Always needing surgeries.  Not feeling how I want to feel - healthy!  I feel like normally I’m a pretty optimistic person and always looking for the good and positive in things. But last night I didn’t give a SHIT.  I know I said many things that scared and worried many people.  I told my Dr that I not mad at him or how surgery went. And I’m not. Everything he did while in there was thorough and understandable.  The stone was nowhere to be found....again.  So my surgeon decided to do something to prevent a stone from getting stuck in the bile duct again. So we wouldn’t be doing this again in the near future.  It all makes sense to me.  I told him I am mad at the world.  I told him he should be glad he wasn’t present 2 hours earlier when I was really steamed up. Matt, in his very rational mind, kept reminding me I just to sleep.  Dr Davis asked me if I wanted some Ativan to take the edge off emotionally overnight. I told him I didn’t. I said I need to work through all these emotions now while I’m having them since I can now (being here and not having much to do - well, other than heal up and all that’s involved with that). Better to deal with it all here than when I get back home and I’m with my wonderful kiddos.  He asked ‘are you sure? with an eyebrow raise.  I know he was worried about me too. When he left the room I took Matts advice and I slept.  I have no idea how long, but I know he sat in my room with me the entire time.  I have to add, in my fit of rage and despair, he really stepped up.  In ways I’ve never seen him have to do before.  In the moment I told him he was bossy, but I know he was doing and saying all the right things to help me.  

So after a good rest, I woke up more rational and feeling like everything is going to be okay.  I cried. I mean I’ve cried a lot. And that is okay. I was determined to let myself feel all the feels no matter what they were.  I’m still crying a bit this evening.  The sadness is not going to disappear in an instant. But I have really improved today. I got a REALLY good nights rest thanks to an amazing nurse. You can still be a thorough night nurse with good patient care and allow your patients to rest.  I woke up this morning still feeling pretty down and unmotivated. They forced me out of bed at 7am.  Sat in a chair for a few hours before doing much else. Several people, but mostly my mom and husband really pushed me. They told me ‘you know what you need to do to get out of there’. At the moment I didn’t even care. I didn’t care to get out of here. I would find myself just staring into space at times.  There was also a provider (one who actually kind of knows me by now) who came in to check on my pain and realized I wasn’t okay. He sat down with me. He took the extra 3 minutes to have a chat and be real. And he had many good suggestions. Acupuncture.  Massage therapy.  Guided imagery.  He asked if I was interested and I said absolutely but that I know their schedules are hard to work around. He said ‘it doesn’t matter.  I’m going there right now to light a fire’. And he did. Within 30 mins more people showed up at my door. Including a kind of counselor person. She sat and talked for about an hour with me.  It has been so validating to feel heard. Not one person tried to brush off how I was feeling. Not one. Every single person I’ve encountered today has let me feel my feeling. Has let me cry.  And because of that has given me hope.  I was never worried about healing physically.  I was extremely worried and still am a little about healing mentally and emotionally.  

But it’s nearing the end of the day here and I feel accomplished. I’m so many ways.  I went from not caring about much this morning. I mean, I had a foley and didn’t care. Yuck. To now being ready to say goodbye to the PCA and hello to oral pain meds. So hopefully tomorrow I can be discharged and stay the night in the hotel again with Matt.  I gotten lots of walking in today. My appetite is coming back to I’ve eaten a good amount. I’m still working on hydrating, but we can’t do everything at once, right. Glad I have IV fluids still. Haha. 

So just to wrap this up. Anybody going through a rough time. It’s okay. Let yourself feel all the feels. And if that becomes to much don’t be afraid to reach out to somebody. Anybody.  I know the best medicine for me right now is walking, talking to my family, laughing, and being able to at least see the outdoors.  But sometimes we need actual drugs to help us. And that’s okay too. Everybody is on their own journey. And we are all doing the very best we can. Let’s give ourselves grace and kindness...everyday.  ♥️

Big Updates

Well, the last week has been a bit of a whirlwind.  Sunday, March 21, my pain came back within 30 minutes of eating my avocado toast as my bedtime snack.  My husband was able to massage my back and bit as I laid on my heating pad and it subsided for the most part. Thought I was in the clear. Monday morning I woke up feeling pretty normal. My mid to upper back was a bit sore but I didn’t really think anything of it. As I was driving to work I did my usual (since I have a decent commute) by drinking some water and then eating breakfast. Within 20 minutes the pain returned. I got to work, then immediately turned around to try to get back home as soon as I could. I almost made it, but had to stop along the way to wait for a ‘bad’ point of pain. So eventually I made it home and rested on the heating pad. Had pain on and off all day. Didn’t really eat much because I was afraid to. Just tried to stay hydrated.  

Same thing was happening on Tuesday so I called my surgical team to hear their thoughts. Oh, I should add that on Monday I realized the pain was more localized on my right upper abdomen instead of my left (which is where the pain usually is). And Monday night I realized I had some leftover pain medication I could try. So I did and it helped tremendously. I was able to sleep and woke up feeling rested.  Okay, so talked to the surgical team on Tuesday. They said since the pain meds were helping to wait and see how I was feeling on Wednesday.  So I did. It wasn’t getting better. I couldn’t take it anymore. 

So I went to the ED. Very good, quick experience.  Upon ultrasound of my right upper abdomen, they found 2 gallstones in my common bile duct. Ugh. In a person that has their stomach they would just do an ERCP. Which is basically a scope through your mouth, they find your gallbladder and common bile duct and fish those stones out of there. Since I don’t have a stomach my anatomy is way different and makes this procedure much more complicated.  So I immediately talked to my surgeon at the NIH.  Upon very little thought and discussion we decided it was probably best for me just to fly out early and get this figured out. I was supposed to fly out Sunday, March 28 for my 2 year check up anyway. So Matt (my husband) and I just hustled and got everything ready to fly out Thursday morning.  Got to the NIH around 7pm where they admitted me and did al the things they needed to do for me to be ready for an MRCP on Friday morning.

Immediately after the MRCP, the MRI tech informed me they needed me in preop right away.  Since my husband wasn’t allowed in the hosptial with me, I was trying to coordinate with him and how to get in for the procedure and find out where he was. I guess he had been looking fore when I was in the MRCP and getting a bit anxious...understandably. I think at one point he thought I had gone to the OR already. So anyway, him and I met up in preop. Phew. Surgeon explained everything they were going to do in the OR and off and went. 

Well, the procedure did not exactly go as planned. Those stones were being very stubborn so he had to reopen part of my old incision for the Lego a gastrectomy surgery.  He tried for 2 hours before deciding to do so. Seriously, he’s the best. What other surgeon would have done that?  In the end I think he was very disappointed in how everything went. He thought he got the stones out but didn’t actually visualize the stones leaving the bile duct. Did his best to confirm and closed me up. 

I’m in the hospital post op and they are keeping very close eyes on my liver function. Some levels started to go up immediately after surgery. Then started to go down on Saturday. So we all felt a bit better about that, but decided it would be best to stay one more night. Sunday, I got discharged from the hosptial and stated the night in the hotel with Matt. We hadn’t physically seen each other for almost 48 hours. Weird for us. Haha. It was nice to take a shower in the nice hotel shower, wash my hair, be in a comfortable bed.  All the things.  I woke up this morning (Monday) feeling ready to take on the challenge of getting back to my hydration and eating routines.  I needed to go back to the hosptial to get a DEXA scan (part of the yearly checkup) and get my liver labs checked one last time. So did those things, then just sat outside for over an hour enjoying the beautiful morning while I ate a little breakfast. Matt was doing work stuff (when he’s not there he still needs to run things from afar which is not easy for him - it can be very stressful at times). There we were just soaking in the morning.  Then I get a call from the surgical fellow that my bilirubin levels spiked up higher than they been at all. My heart dropped. Does this mean they didn’t get the stone that was really stuck in there?  Does this mean I need to have another surgery?  What does this mean?  She told me to come back and we’ll have a chat but that they were scheduling me for another MRCP to try to figure out what’s going on. 

So we all (me, hubby, surgeon, and surgical fellow) all had a chat about all the possibilities and all the different plans depending on what the MRCP shows. So here I am waiting for the MRCP. But this definitely means we won’t be going home today.  The kiddos don’t know yet and are going to be sooo disappointed and sad. I’m just going to have to explain to them this it’s for the best and we need to make sure mommy is all good to go before she goes home. That way I won’t have to get home and turn right back around to come out here.  I hope I have the right words to help ease their concerns, anxieties, frustrations, and sadness when I talk to them a little later today. 

So there’s an update with what’s going on. Writing this out actually helps me ton, both mentally and emotionally.  Just taking the time to reflect on my experiences and appreciating the little things that make a big difference.  Like that I didn’t get all the way back to the hotel and have to turn around right away to come back. Or that I have my amazing husband here with me who is now allowed to be inside with me today. Or that I have such amazing support system at home.  Or that I have no stress about what I’m going to do about the kiddos. Or the house. Or the dogs. Or work.  I can focus on what’s going on right now with me and take care of that.  And that I was able to enjoy the cherry blossoms for a short time while waiting for the metro after landing in DC.  And all the spring flowers that are popping up around Maryland this time of year. 

Anyway, thank you all for staying tuned.  

Happy New Year!

 Happy New Year!!  I hope everybody had great family time for the holidays even though family time might have looked a little different this time.  In the midst of the holiday craziness, I was pursuing additional tests and such to try to figure out the abdominal pain issue once and for all. For a while it was getting better. The osteopathic manipulation seemed to be helping. Until about a month ago it happened again.  At work.  Debilitating.  My hubby picked me up and drove me home.  The pain subside mid day. I slept for several hours. Tried to hydrate as much as possible upon waking up. Are a light dinner and it started again. Ugh.

So the next day I called the GI doctor I saw in the hospital back in May.  Got a virtual appointment that afternoon with the NP.  After describing my symptoms and pain location she ordered an ultrasound and blood work.  Blood work looks pretty good.  But they did see gallstones on the ultrasound.  So she wants to schedule me for an EGD and HIDA scan.  I don’t feel super comfortable having them do an EGD since they don’t really know my anatomy, so I reached out to my surgeon at the NIH.  He’d like me to go out to Maryland as soon as COVID calms down a bit again so they can do these tests and try to figure out the source of my severe intermittent pain.  So that’s the plan. Hopefully I’ll be out there in a couple months.  And hopefully I don’t experience the pain again until we can figure this out.  

On a side note, life has been a bit crazy with the holidays, a wedding in the family, and my sons 6th birthday coming up.  I keep telling myself things will settle down after his birthday. But will it really?  We have projects we want to get done outside while weather is nice.  It seems there is always something. Do you ever feel that way?  Don’t get me wrong, we enjoy the little things in life through the craziness, but it would be real nice to just be and not feel like we need to be doing something all the time.  Is it just me?  

NIH 1 year follow up

 Three months ago I sat down and wrote a blog post. But I never actually posted it.  In the moment I felt a bit crazy.  I got self conscious and started worrying about what people would think of me.  But today, I’m not concerned about it.  I am transparent and honest and I am proud that I’ve found ways to help my body when nobody can really figure out the answers.  So I’ve back posted 2 blogs.  And here goes a current one.

I am currently in an airplane on my way home from Maryland. My 1 year post op follow up was long over due.  It’s actually been 18 months. That’s so hard to believe.  It’s been a rollercoaster to say the least. I’m taking every precaution I can to stay safe during COVID. I have a mask with a filter that is better than N95s, I wipe down all surfaces I’m going to touch. And I have hand sanitizer easily accessible of course. Anyway, I felt the need to mention all of the above because to be completely honest with you I was a bit worried going into the travel. Luckily, the flight to Maryland was half empty and I only had 2 people even remotely close to me. But now I sit in a package of sardines for the flight home.  I haven’t heard anybody cough or sneeze. And of course we all have our masks on. 

Okay, back to the NIH visit. It was short and sweet with lab work, DEXA scan, and chat with Dr Davis and my dietician.  Lab work looks good. Iron levels are still slowly increasing. So they want me to keep up with my iron regimen. DEXA scan shows a slight decrease in density compared to my scan last year, but still well within normal range. I feel so good about that. I was a bit paranoid as I was an idiot right after my gastrectomy.  I knew I needed to take Calcium Citrate multiple times a day.  But I found the huge pills difficult to take and to remember 4 times a day was also difficult. So I found some chewable ones. Well, three months later when I go to reorder them I realize I ordered a different type of calcium!  Doh!!  I felt so stupid. Anyway, so bone density scan all good. 

I spoke with Dr Davis about my gallbladder vs other cause of the pain I’ve been having.  We both agree that we don’t think it’s a gallbladder thing. I explained some of the osteopathic manipulation I’ve been doing and he seems a bit intrigued. He said he has about a handful of patients that are having very similar experiences.  He asked that I keep him in the loop about it all because he would love to start reading up on it and be able to start recommending something similar to other patients if they have it available.

I won’t bore you with all the details but I did have the pain again about a week ago while my hubby and I were on an epic road trip for our 10 year anniversary.  Thankfully it only lasted less than an hour or so. As soon as it started I laid flat on my belly on a heating pad. And eventually was able to get comfortable enough to fall asleep. 🤷🏻‍♀️

Just rolling with the process.  And hopefully I don’t actually go crazy while doing so. Haha.