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. 

 

Feel Hungover

 Osteopathic doctor warned me to drink lots of water and get lots of rest after that first manipulation appointment. Well, yesterday I worked and felt great the whole day. Today I woke up and feel like I have the worst hangover I’ve ever had.  The headache. The nausea.  Just feel like I’ve been run over by a semi truck. So in my mind right now I’m thinking between the osteopathic manipulation and the accupressure, something is changing in my body.  

Stay tuned...

Osteopath

 A couple weeks have gone by since my visit to the hospital.  I’ve traveled through quite the mix of emotions during that time.  The most prominent immediately after leaving the hospital was frustration.  Frustration that nobody knows what to make of my situation.  Frustration toward myself that I should communicate better.  Frustration that my family feels helpless.  And so many other things.  Even though I had these intense feelings of frustration I kept telling myself to think positive.  I know that medicine is a science and it is not black and white.  I know that my knew body can be a challenge at times.  I’ve always believed things happen for a reason - even shitty stuff happens for a reason.  We might not always know that reason in the moment and that can be frustrating.

 I have a strong tendency to worry.  When this pain happens, I worry about what is causing it.  I worry if I will need another surgery.  I worry about how much the medical bills are going to be.  I worry that it is going to happen again.  I worry about how these situations are going to affect my kids and the way they see the world or how they cope.  My mind just goes crazy with worry.  And I completely understand that worrying is not going to accomplish anything.  And I completely believe it causes more grief than is necessary.  I also believe the mind is a very powerful thing and such worrying can cause more physical ailments.  Because of this, I am constantly reminding myself not to worry.  I’m not a religious person but like I said I believe things happen for a reason and I believe in a higher power.  There is no need to worry.  

At this moment, we don’t know what is causing the pain, and that is okay.  Maybe we aren’t supposed to know right now.  What does it really matter if I need another surgery.  Is that really the worst thing that can happen?  I take care of kiddos everyday who have had countless amount of surgeries.  Poor kiddos.  And they have the best attitudes.  The cost of medical bills can be super frustrating, but what does worrying about it do.  Nothing.  And we are so fortunate to have good steady jobs.  And the ability to save and be prepared for these situations.  And what if it happens again?  Well, we will deal with it just like we have before.  And maybe that time will be the time somebody figures something out.  And for my kids.  They are resilient.  They are smart.  They will see my strength, courage, positivity, and grace though these situations.  It is so extremely freeing to let go of the things you cannot control.  No matter what happens, life will go on and we will get through it and will be stronger for it.

With all of that said I still find it important to be an advocate for myself and to research and talk with people in similar situations.  I’ve done some connecting with other people who have my genetic mutation and have had their stomach removed who also have had this weird abdominal pain.  Since doing so, I’ve remembered that my surgeon told me it is very common to have gallbladder issues after the removal of your stomach, but more so if you’re really over weight to begin with. If that’s the case you usually lose a larger amount of weight is a very short amount of time. Which can cause issues with your gallbladder. So he usually just takes the gallbladder out with the stomach in those patients.  At the time I was not a candidate for that. At least not on his recommendation.  And I agreed with him. I’d like to keep as many of my organs for a long as I possibly can.  But now I’m wondering if this is my issue. My most recent CT scan looks okay, but I’m wondering if I should pursue more imaging to rule my gallbladder out.  So while in the hospital a couple of weeks, I spoke to the hospitalist about possibly working up my gallbladder. He didn’t think it was a bad idea.  It would be good to rule out so we know for sure it’s not that. Cause that’s what we do in medicine. We make a list of all the things it could be so we can go through that list and cross the items off one by one. So he recommended I follow up with my PCP for pursuing the gallbladder as a cause to my pain.  Anyway, the hospitalist is actually a DO and practices osteopathic medicine as well.  I actually had an appointment with him today.   He spent over an hour with me.  He explained osteopathic medicine with info than I could ever absorb about our lymphatic system and the entire time doing osteopathic manipulative medicine with me today.  I’m still not entirely sure what exactly that means, but he had a lot of insight and spent a very long time with me working on fascia release in my abdomen, and lymphatic drainage.  I will definitely be going back.

My chiropractor also came to came for another acupressure session.  I know I’ve mentioned him before but can’t remember how in depth I went about acupressure and what he does.  Acupressure is very much like accupuncture, but there are no needles involved.  It is all based on the knowledge that we as humans are made up of energy. Just like everything else.  And sometimes things in our bodies or things that happen to our bodies cause a block in the flow of that energy.  The accupressure or accupuncture helps to relieve that blockage so the energy can flow more freely again. When we have blocked energy within our bodies it can cause symptoms like pain or nausea.  Way back shortly after having my stomach removed I was super nauseated. A lot of the time. I had more days of nausea than I had with no nausea.  Dr Berg came to see if there was anything he could do to help me. And I know this all sounds super hoaxie and totally hippie but I was so surprised at the sensations I was feeling as he was doing his work to release the blocked energy in and around my abdomen.  I remember after that first session feeling a world of difference for the better. I had a bit more energy.  I had a appetite and the nausea was markedly improved. I would go into more detail about the sensations I was feeling but I think you all would really think I’ve gone bat shit crazy. So let’s just leave it at that for now.  He did a lot of educating me on what he does and how the energy flows in our bodies and what helps with energy flow and what can cause blockages of that energy.  And in the several sessions we’ve had since that first day we’ve chatted more and more about it all including grounding our bodies to earth and earthing and all sorts of non western thinking.  Over time I’ve come to believe that this man is a true healer. He has a gift within his hands and I feel so fortunate to have crossed paths with him.  

But let’s back track for a minute to last week.  My chiropractor came, which was about a week after I was in the hospital.  I just felt he could help me. So he came and went and I felt a tad better in general. As the next week went by I just felt like there was a spot in my abdomen that just felt congested and stuck. Not really sure how else to describe it.  I made an appointment for today to see if we could relieve that feeling I’ve been having.  As he did his thing and felt around my belly he located several spots that caused discomfort on palpation.  Long story short he was able to help those spots.  To the point where the feeling of hollowness where my stomach used to be has changed.  The best way I can find to describe the feeling is full. It no longer feels there is a void there. 

So between the acupressure and the osteopathic manipulations, I think we might be onto something.

Stay tuned...

Abdominal Pain AGAIN 🤦🏽‍♀️

Hello.  The last couple of months have been filled with spending lots of time at home. School from home. Kids spending lots of time with Grandma while my husband and I work.  It actually has been a nice time to slow down a bit. As much as I miss people and social interaction.  Yet at the same time I have felt just as busy as ever. Trying to do school at home for our daughter has been an interesting change. It’s been forcing me to do school work with our pre-kinder kiddo. So that’s an upside.  It has definitely been a challenge adding teacher to my already diverse resume.  No longer just a nurse, mom, wife, housekeeper, and chef.  Now I can say I have experience as a teacher, PE coach, principal, and referee.  Haha. 

With all that said it’s even more interesting while experiencing all this COVID stuff as an inpatient in the hosptial.  Today is Friday. On Wednesday afternoon I started having abdominal pain. Left work early and drove myself to the emergency room. I was really hoping it would pass so I sat in my car for about an hour and half to try to wait it out.  Which was not working.  So after 3 hours of intense pain I went in.  I found it interesting they weren’t screening for or testing people for COVID upon entering. Nor were they offering people masks. 

Anyway, sat in the lobby a couple of hours before being taken back. That was fun. Being in intense pain and vomiting in front of everybody in the lobby was a new experience for me.  

Met the ED Dr who I had seen last year once for this same type of abdominal pain. So it was nice to see a familiar face of someone who I remembered liking in the past. Got worked up with labs, urine, IV, pain meds and a CT scan.  Thank goodness for pain medication!!  So they found a UTI but that doesn’t really explain this intense abdominal pain.  So they decided to admit me under observation since I didn’t feel comfortable leaving.  The pain medicine was working but once it wore off the pain would come right back. This is by far the longest this type of pain has ever lasted. Something has to be wrong. The CT didn’t show anything.  Which I wasn’t surprised about. I mean it’s good it didn’t show anything but it would also be nice to have a definitive reason for this pain.  So they admitted me.  I had a consult with a general surgeon. There’s nothing they see wrong that requires surgical intervention. And the gastroenterologist said the same thing...nothing they feel they need to do right now. Especially since the pain was gone by the time I saw them. The good news is that now I’ve been established with both of these specialists so I can call them if I need to.  

I just got discharged a couple of hours ago and it felt amazing to get home and take a hot shower.  Kids are at Grandma’a house swimming so I have a little quiet time to myself to gather and compose my thoughts and feelings.  It’s these moments when I have this extreme pain I completely regret having my stomach removed. I start thinking all the reasons I shouldn’t have done it. It doesn’t take me long to snap out of it as I know deep down I did the right thing by removing it.  But I think it’s worth mentioning for any of you who might struggle with similar circumstances.  

So now I’m home feeling ready to conquer the world. Haha. I feel really good right now. But I am forcing myself to rest and eat. I only ate a very small dinner in 24 hours. And then so far today I’ve only eaten 2 very small meals.  It’s amazing how fast weight can drop off me these days if I miss a few meals. So wish me luck I’m that department.