Still Standing

This last week, on the 28th was Superior Mesenteric Artery Syndrome Awareness day and this week also marks 5 years since I had surgery to help my body cope with this syndrome. If you want to read more about SMAS this post explains it in more detail. While I had a surgery that rerouted my intestines around the compression that was caused by SMAS, it wasn't a cure as the compression is still there but it did help in many ways. 5 years later I wouldn't have really dreamed where this journey would have taken me.

 

Last year I was diagnosed with Gastroparesis (mentioned here). In April I had a botox injection into my Pyloric valve and it was amazing. It took a couple of weeks to start working but I went weeks without throwing up. It gave me the strength to get through our move to Washington. Those who follow me on Facebook, know that in July we moved from Wisconsin for Sean to take a new position at Central Washington University. We sold our little house in record time and found a nice little duplex in Selah Washington to rent. On July 11, 2019, we officially made Washington our new home. 

While the move went pretty smoothly, the stress, I think caused the botox to wear off faster then I would have liked. So we got hooked up with a Dr in Seattle (which is about 2.5 hours away) who specializes in gastroparesis and after trying some different medication, and it not really working, we tried having the botox injections done again. That was 6 weeks ago. Unfortunately this time around, the injections didn't work at all. I met with the Dr again last week and she is having me try out another medication in hopes that it might cause my stomach to contract and work. She also ordered an Upper GI Series to asses my organs. It is a test done by drinking barium and then taking a million x-rays. 

Since I hadn't eaten or drank anything that day, they were able to squeeze me in so we didn't have to make a trip back to Seattle.  The radiologist was really quite amazing and spent time explaining what he was seeing and he listened as I explained my medical history. This ended up not being your standard Upper GI series as they were specifically just looking at the stomach and duodenum. As we talked I helped him understand my history and anatomy which he said helped him make more sense of my strange anatomy. Because of my multiple surgeries there aren't a lot of other cases to be able to reference. So being able to competently explain things and have it received well made the test more effective for both of us. 

Unfortunately, the result of this test showed that my Gastroparesis has progressed to being severe. The stomach signal that usually is sent when you eat, for me isn't happening and my stomach hardly contracts. Which usually results in getting full quickly, nausea and if I eat too much, or my stomach really isn't working, which, lets get real, feels like most of the time, I throw up. 

Throwing up has become a part of my life. My girls aren't even phased by it and they are even now starting to pick up on the signs of when I have to throw up. While this isn't my idea of memories I thought my children would have of me, it is now something that is a normal thing in our house hold. My girls see me as their mommy and they don't care if I throw up as long as I don't breath in their face afterwards.    

One thing I have learned is that I'm living with a mostly invisible disease. I am also totally guilty of posting the "best of" on social media. I try hard to not let my illnesses effect my life too much and honestly, to the outside eye, my family probably seems like your normal healthy family. What you don't see is all the adjustments that we have had to make to function and sometimes it is great and other times it falls apart. The important part is that we make it through and usually it is because of the friends and family that support us. 

What I don't show very often is the recovery that comes with doing things as "normally" as possible. The week after we came back from Japan, I pretty much got the kids off to school and then went back to bed till it was time to pick them up from the bus. Or after we came back from our New Years trip to Utah, how I had to get extra bags of IV fluid to make it through the week. Last week I started getting IV hydration 3 times a week and it has become a part time job to keep me hydrated. 

I don't like to share these things because in part they have just become a part of my life and all in all I have a very good life, but it sometimes feels like a weakness and it takes vulnerability to share weakness. Something I'm learning to become more comfortable with. Honestly being sick at times, makes me feel like I'm living a life that is less then what it could have been. Then I look at my wonderfully imperfect family and I think about how I have access to medication and IV hydration that allows me to be a wife and mother. I'm grateful for the ability that I have to do the things that I can do. 5 years ago, doing a load of laundry took everything out of me, I was much more of an armchair parent and life was just overall harder. Now I'm learning to feel more like myself and I can be there for my family and for other and can even do a bit more then I used to be able to do. I have been blessed with times that my sickness hasn't been as intense and that has helped my body recuperate a bit and regain strength. 

As we look forward to the future, the goal now is to manage my symptoms and increase my quality of life. I'm getting IV hydration several times a week to reduce the dehydration that my body has become so accustomed too. Last week I experienced what it was like to have a normal bladder and it is funny to say that it takes some getting used to and needing the bathroom during the day, which is something I'm going to have to get used to. 

Like anyone, I really don't know what the future has in store for me but for now we are doing all that we can to help my body out where it needs it. Right now it is handling the side effects of throwing up really well and has learned to adjust but I'm not getting any younger and so we are doing things, like IV's to make sure that I can live a long and beautiful life. This may slow me down at times but this wont stop me. 

Continuing my story

I have't written in a while and it is not from a lack of want or thought about it. In fact I have spent many hours thinking about how I should start this update or if I should call it an update or maybe I should just write a little or maybe a lot. Maybe keep it pretty impersonal or dive to deep into the personal. And for those of you who have read my blog in the past, you know I'm pretty good about sharing the personal things in my life and I tend to write longer posts. Unfortunately for those of you hoping for a shorter post, this probably isn't going to be it. I have been quiet for too long. 

463 days ago, our little family left our Columbus family to start a new phase in our lives. We had lived in Columbus for 4 years. The longest we had lived anywhere as a married couple and the friends we made there will be a part of our lives forever. They, along with our extended family and friends, saw our family through some of the toughest years of our lives. Sean was working on his PHD, we welcomed Kassia into our family, all the while I battled one GI issue after another. 

76 days before we moved, I underwent surgery to help me to not throw up anymore. It was a Pyloroplasty, which I think that was the last time I really blogged about my health. The surgery was successful. Although I still was occasionally throwing up, it was mostly when I over ate. That was manageable. I could keep liquids down! For those of you who know, that was a big deal. The healing process from that surgery was slow and painful but by the time we moved, I was feeling much better. I had energy again and I was amazed by how being fueled by real food could make such a difference. 

When I left Columbus, I left my dear friends thinking that I had turned a corner, that we had finally found a fix. I was heading into our new life with a clean slate. Yes I would still have to follow up with dr's but it wasn't going to be a mainstay in my life. We would meet new friends and people in Wisconsin who didn't have to know my health history because I was wearing it on my face or because I was constantly in and out of the hospital. I want to preface, I was never made to feel like a project or a burden to those in Columbus who helped me and my family. They cared for me because of me and not because of my sickness.

 Most of what I am about to talk about has to do with the demons that I personally deal with. The perspective of the person I am and how I feel that people may perceive me because of something out of my control. I didn't choose to allow my body to not work properly, I feel like it is a byproduct of being human. Our bodies sometimes work great for 90+ years, sometimes they never work from birth and other times they work great for years and then something, something random, starts to affect them in a way no one saw coming. 

For me I was the latter. I was so active and really if I wanted to do something physically, I would work till I could. I had energy for miles and I guess I needed to learn some tough life lessons. I though that having infertility was the toughest lesson/trial would have to face in life. At times it was soul crushing! But this life had other plans for me because after having Maia, life hit me hard. Then a huge miracle happened. I was pregnant again and Kassia was born 9 months later. Then the next hardest thing in my life happened. What started as an acute illness turned chronic. 

I want to justify my history with my history and dialogue about everything that I have been through, seen and learned but there is too much. It is enough to say that I feel like I have been climbing over some of the toughest trails, fallen off a couple cliffs but because I was not alone, Because of my faith, Sean, wonderful family, friends and my two beautiful girls, I have been able to keep going. I have had the right medical practitioners come into my journey that have helped me stay here as well both mentally and physically. I think of all that has been done and my heart is overwhelmed because I get to continue to live my life, albeit not how I imagined it, but I get to live it, with my husband and two miracle children. 

When we moved to Wisconsin I thought that I had closed the book on my most pressing health concerns, I thought I could write a new story. What I failed to realize is that my story is a part of me and it has come back to remind me that. My health story will come in chapters, mixed with other chapters that will intertwine with each other to make up the book of my life.

176 days ago I was diagnosed with Gastroparesis. Which means that my stomach doesn't empty the food that goes into it in the normal amount of time. So when I eat things back up and it causes me to throw up.  

793 days I had my last feeding tube removed. It was the day I swore I would never have another J tube (jejunal Feeding tube) placed in my abdomen again. 

9 hours ago I had a feeding tube (NJ) placed through my nose, into my stomach and passed into the jejunum to help me regain some of the weight I have lost due to the Gastroparesis. It is hard having a tube hanging out of your nose. It doesn't look right. Honestly it doesn't feel right. Having something down your throat 24/7 isn't super comfortable. I hated the last one I had 4 years ago. This one I'm hoping will be very temporary, just something to help get me through then next few weeks. Help me get my energy back up. 

Having this tube on my face digs up a lot of emotions and insecurities, because it opens a new world where I get to explain to every person what is going on, what is on my face and if I'm going to be okay. I really don't mind answering those questions, especially on my own terms. I enjoy educating people about various health matters. I just don't like feeling forced to do so. This tube however forces my hand. 

I know I make this a lot about me, but I understand the impact this will have on my children. Maia was 4 the last time I had a feeding tube and Kassia was 2. They don't remember it. But their classmates will ask them what is wrong with their mommy, as this appears different. We have hopefully taught them well enough that different isn't bad but I know this is going to be a growing experience for all of us. At the end of the day though, I know I am surrounded by good people. I have a wonderful family, girls who tell me I got the tube because I am hangry and tired and because I throw up so much. Luckily we can find the humor in it all and they look at me the way only a child can look at their mother. They love me and I'm so grateful that there are so many wonderful inventions to keep me alive.

One constant: Change.

I have been sitting here for a while trying to figure out how to start this post. So much has been going on the last couple of months. It is hard to know where to start so bullet points it is:

• Botox was a success but it only lasted for 4 weeks. The surgeon said that it could last anywhere from 3 weeks to 6 months. Unfortunately for me it started to wear off at the 4 week mark (April 14thish), granted it was wearing off slowly but that is about the time I started to throw up again.

• April 11, Sean left to go to conference in South Carolina, My brother and my mom came in that day to visit. My brother only stayed the night and was off the next morning my mom stayed for 10 days to help while Sean was gone and Maia was out for spring break.

  

  Fun Uncle Brad

  

  Skyping with Uncle Brad's boys. good cousin time.

  
  

  

  Although these are out of chronological order we were all sad to see my mom leave.

  

  Kassia wouldn't stop crying that Nona was leaving.

  

  Maia did a little bit better with her goodbye's

• April 13th, our engine in our car blew and $2300 later we had our car back.

  

  I took the city bus to get to my Gastric emptying study since our car was in the shop but I just thought the trees were so beautiful.

• April 14th, I did another gastric emptying study and it came back improved. 

• April 19th My mom, the girls and I went up to Michigan to see my cousin and family. The Girls loved their goats and chickens.

Loving some goat time

Sweet cousins!

• April 20th, I met with my surgeon a week later to go over everything and he gave me 4 options: 1. Don't do anything, 2. Continue to have botox injections (problem is I would need them every 2 months and the longer you use them the less likely they are to work), 3. Have an endoscopic procedure, called a Per-Oral Pyloromyotomy (POP) to cut they pyloric valve and make it permanently open (I'll talk more about this in another post), 4. Have the Pyloromoyotomy done either laparoscopic or through an open surgery. 

• Because of the relief I felt and the improved emptying of my stomach, we have decided to move forward with the POP procedure and I am scheduled to have that done on June 6th.

• The end of April first part of May, I had my very good friend Katie come visit me from Texas! It was a wonderful visit and I love friendships where you can pick up like you haven't spent any time apart. Maia particularly liked Katie.  

  

  Maia spent a good hour plus reading with Katie

  

  When she got fidgety they did exercises

  
  

  

  We had a chance to go to the zoo and the girls were tired but Katie and I enjoyed our time there.

•  May 5th Sean and I took advantage of a deal OSU was doing for students at Cedar Point, which is an amusement park. We had a baby sitter for the kids and hoped the weather would get better. We ended up getting rained out but we gave it our best rode the 4 of the 7 rides that were open. Luckily we can go back any day this season since it was such a bust. 
  

• Since most people around us know it is time to let everyone else know. In March Sean accepted a full time tenure tract teaching position at the University of Wisconsin Parkside. He will be starting there in August so we have been spending the last couple of months taking trips up to Wisconsin to look for housing.

• We were able to stay at Sean's Aunt's mothers house and had a fabulous time with Sean's Aunt Debbie and the Girls love her! 
  

• On May 8th we made a trip to the Racine/ Kenosha area and were able to put an offer down on a house. Our offer has been accepted but since it is a short sale we have to wait for the bank to approve the offer. So the earliest we will probably find out if we can get the house would be June 14th. So we are hopeful but not getting too attached because there is no guarantee it will go through. 
  

• On May 11 I ended up in the hospital due to an Supra-ventricular Tachycardia (SVT) attack. My heart was racing about 240 beats per min and I couldn't get it to slow down. By the time I got to the hospital I was having a hard time breathing and my blood pressure was really low. They gave me some medicine to help my heart restart and it did the trick. They think the attack was caused do to dehydration but the interesting thing was I didn't feel like that dehydrated, and I know how my body normally reacts to dehydration. They kept me overnight to dehydrate me and keep an eye on my heart. I was discharged thinking that I was going to have to have surgery to fix the SVT before I could have my surgery to take care of my vomiting.

  

  Poor Kassia was there for the whole ER trip and luckily she is too young to really understand what was going on. She like seeing all the similar medical equipment that she used on her when she goes to the doctor. This was taken then next morning when they came to visit.

  

  The cardiologist drawing as to what was going on with my heart.

• On May 17th I met with a cardiologist who specializes in Cardiac Electrophysiology who explained that SVT's aren't dangerous but that unless I want to stay on medication for the rest of my life, I should get it taken care of through an Electrophysiology Study (EPS) and Ablation. This would in essence stop my SVT's from happening. I guess I have dealt with SVT's for a while it just hasn't been too bad and before I really only had a problem when I was pregnant. I started having more episodes since having the Botox and this last episode has us considering having the EPS done. 

  

  Waiting for my appointment.

• May 19th Kassia had her 8 month Cardiology appointment and she is doing wonderfully!! She is growing and as sassy as ever. She doesn't have any restrictions and doesn't need a follow up for another year! This day Maia also graduated from Preschool. She has had such a good time at head start and will be missed. Next year she will start a 4K program in Wisconsin.  

  

  Kassia helped put the leads on for her EKG

  

  She also helped take them off. She loved the nurse but then wouldn't say a word once the doctor came in.

  

  Maia was really excited to have Kassia and Sean and I at her end of the year party.

  
  
  
  

• Last Sunday Sean and I were both released from our church callings which we have loved but are looking forward to being able to focus on all the change going on in our lives.

• This week Sean went to Georgia for a Coaching Conference and was gone for about 4 days. We were very glad to have him back.

•  Throughout all of this Sean has been working really hard to finish his dissertation. He has to have his finally draft to his committee but he is trying to get it pretty much finished before I have surgery so he can focus on the family for a few days before he has to start prepping for the class he is going to teach this summer and prepping for 4 new classes he is going to teach this fall. 

I think that pretty much sums up all the crazy changes that have been happening in our life. I'm sure I have missed something but this should give you an idea as to what has been happening in our lives. I will hopefully post next week with more details about the surgery on the 6th. 

Here are a couple of pretty cute pictures of my girls that fit somewhere in the timeline above: 

A few less wrinkles and a bit more energy

Many of you have wondered how I have been doing since I had my procedure done on the 15th, so I figured it was time to give a recap of the last 12 or so days. 

 

I just had to start of with this cute face because well you can never have enough of it and I got a few extra snuggles before she headed off to the neighbors house to play, while I headed to the hospital. 

 Here I am all prepped and ready to go for what looks like surgery but there was not cutting of flesh during this procedure. It was just my 16th endoscopy done under general anesthesia. At first I didn't think they were going to let Sean come back but once I had all the tubes and monitors connected and had answered all the "do you feel safe at home" questions, they let him come sit with me until they rolled me back.

After the procedure was done and I finally woke up from the anesthesia, the surgeon came in and talked to me about how everything went. I have to say, usually at this time I am still fairly groggy and although I can remember most of what is said there are parts I miss understand, however this time, the anesthesiologist who did my anesthesia, did a fantastic job of giving me the right amount of medicine. I woke up feeling fairly clear minded and not nearly as groggy as I usually do.

 

 

 

The light blue arrows show the stenosis and the green arrow shows where the opening to the pylorus is 

So Dr Meara, the surgeon, said that everything looked pretty good and that my pyloric valve actually opened up pretty well. He didn't do a balloon dilation as he said that it wouldn't have done any good and proceeded to inject the Botox. He said he wanted me to contact him weekly with how I was doing and to follow up in 4 weeks. The interesting thing though is that in the report he sent home with me, he noted that I had developed mild stenosis around the Pyloric valve which he didn't mention to us after the procedure. It is something I'm going to ask him about when I see him as from the research I have found it can become a cause of blockage to the stomach. It is pretty rare to see in adult but my history of vomiting can be a cause of it. I also find it interesting that this is now showing up, as when I had an endoscopy in February at the Mayo clinic there was no mention of this.

 After I was cleared to go home, I was pretty alert and after about an hour or so I felt pretty good. What ever concoction of drugs the gave me left me feeling great. I didn't really have any pain and I wasn't too tired so after I got some post procedure snuggles from Kassia, I decided that I was hunger and was going to try eating. So I started with some fruit snacks and they went down fine so then I started raiding the kitchen. Not really but since I had been on a liquid diet for two days prior I was ready to eat something solid. So I had some bread and then some crackers and graduated from there. I also drank probably 16 ounces over the course of a couple hours and to my amazement, I wasn't nauseous, I didn't have any urge to vomit and I kept it all down! It was amazing to see such a noticeable difference! I could eat but most importantly I could drink and it was not coming back up!

 That night I helped put the girls to bed and I just had to document the way that Maia sets out her clothes for school the next morning. It doesn't really show in the picture but she has greenish pants and a green shirt as I told her that the next day was St Patrick's day. Unfortunately for her I didn't realize that the next was actually just Thursday and not St Patrick's day Friday till after she was on her way to school the next morning. I blame it on the procedure but I really believed the next day was Friday. 

Anyway after the girls went to bed and I was resting on the couch, I think the medicine that they gave me must of warn off because I started to not feel very well at all. I started to become very nauseous and started having quite a bit of pain under my right rib cage and back. I also started to notice that I was burping a lot. Before the Botox, burping would usually be closely followed by vomiting but not in this case it was purely just air. Although I was uncomfortable, I just turned my heating pad on and went to bed. In the middle of the night I woke up in quite a bit of pain. I sat up and so much air escaped my stomach I thought I was going to wake up the girls in the next room. I was able to go back to sleep but around 6:30 in the morning I woke up and the same thing happened again, except this time I was so nauseous that I ended up throwing up. By that point the girls were up so the day started. Luckily Sean was able to take the day and be home because I was miserable. 

The next few days anything I ate caused me to be so uncomfortable. I was having terrible heart, nausea, migraines, and a huge increase in abdominal pain. By Saturday night I was curled up in a ball contemplating going to the ER because the pain was so intense. Luckily the pain med's started kicking in I was able to get some rest. The next day I just avoided eating anything so I could get through church and not be miserable. I really was at the point that I would have gladly taken the vomiting back to get out of the misery I was experiencing.

 I don't normally show off my stomach but this kind of shows the bloating I was dealing with. Usually I have a fairly flat stomach and it was poking out so much that Maia asked me if I had a baby in my belly. She has lately been asking me if she can have a baby brother. So I had to explain to her that I was just full of gas and not baby. 

By Monday a very sweet friend suggested that I take gas-x and that mixed with enzymes and probiotics, I was able to finally start to get some relief. Tuesday I started to feel better and the bloating started to go down. The problem is that food would normally sit in my stomach, breaking down in stomach acid,  for a little while to before moving out but with my valve being stuck open, food is able to move right out of my stomach and my intestines have a harder time digesting. The bacteria in the intestines produce gas when they digest food so if they have to work harder, they produce more gas, or in my case, enough air to fill up a hot air balloon. 

 

 On Tuesday, at 9 o'clock at night, Maia woke up throwing up and then by midnight Kassia woke up throwing up as well. Neither of them had fevers just complained of their tummies hurting. That day I had fed the girls a smoothie made with Acai berry juice and then for dinner they had some tomato soup that needed to be eaten. Sean and I ended up taking shifts with them through the night and the next morning they were done throwing up. In the afternoon, Maia wanted more smoothie so I made her one with the Acai juice. Sean ended up drinking a good amount of the smoothie too. Well Maia threw it up with in about 15 min and then threw up again 20 min later. Later that night Sean started puking his guts out. In the 12+ years that I have known Sean, I have never seen him vomit that much. It was impressive but lead me to the conclusion that we were dealing with a bought of food poisoning. The Acai juice got dumped. What I find ironic is the one person who throws up the most in this family was the only one who didn't throw up those days. Thank goodness!

By Thursday the girls were feeling better and although their appetites were lacking their imagination was not. They were playing all sorts games with their play dough.   

Through all this I was grateful I was starting to feel better. By Saturday morning, Kassia woke the whole house up with her screaming, since Sean was still recovering a bit and was going to try and play basketball later, I got up with the girls. For the first time in a long time, I woke up feel good!  I had energy. It was amazing. Since I felt good and the weather was nice, I decided to take the girls out for a walk. They loved playing in a field near our house and it was wonderful to be out enjoying it all. 

Kassia and I at the Stake center watching Sean play basketball

 Maia was not really interested in watching Sean play so she decided to play teacher to about 7 kids probably 3 years old and younger. The amazing thing is that she held them captivated for over 15 min. The other parents couldn't believe that their kids were just sitting there listening to Maia babel. It was pretty impressive.

Sean is on the far left, running.

 

And finally to last night. We had a tornado warning and headed down to the basement right before what should have been bed time. Luckily they weren't already asleep. The girls thought it was so funny that our dog Parley kept looking at me underneath the bus that I was sitting on. 

To wrap this post up, I am feeling better and am very grateful for the way I am feeling. I also know that the Botox is temporary. I don't know how long it will last but I will take it for as long as it does. When it does wear off we will look at our options but it is a relief to know what the problem right now is and that has been most the battle is just figuring out what is wrong.

Botox?

Tomorrow I might be getting Botox injections tomorrow but not for what you might think. The current theory is that I am suffering from a Gastric Outlet Obstruction, or in other words the pyloric valve, the stomachs outlet, may not be dilating correctly and causing me to throw up. For most people they deal with ulcers or they a cancer of some kind that can cause the blockage. For me they think it may just be my pyloric valve not functioning correctly.

Image found here

So a couple of options for me is to use a balloon to dilate the valve and see if stretching it out can help. The other option is to inject the muscles around the valve with Botox. This would cause the muscles to be paralyzed and the valve to stay open. The hope would be that this would allow the food to pass through into the small intestines without much resistance from the valve. 

Image found here

I'm not sure exactly if the surgeon who will be doing this procedure is going to start with the balloon or do the Botox. I will talk to him more about it before we get this underway. I have to be at the hospital at 11:15 am and it probably wont start till 1 or 2. Usually this procedure is done with a twilight sedation in the endoscopy center but my surgeon is a bit worried about the complexity of my case, so he is going to do the procedure under general anesthesia, in a surgical suite. I think it is a bit of an over kill but better to be safe than sorry. 

Since this is being done under general anesthesia, I will probably be out of it most of the day. I have learned it takes me a while to wake up from the anesthesia and it leaves me pretty groggy. I will update everyone when I can.

The Future

I had a very wonderful experience today.  I met with a new surgeon today, through the OSU system. My GI Dr works closely with him and had filled him in previous about my history and he agreed to take my case. My GI Dr has been really pushing for me to have a roux-en-y gastrojejunostomy done. Which would be a major operation. I was really nervous about this appointment, especially after my experience of being dismissed by the Mayo clinic.

To my surprise, the appointment went amazingly! He listened and really showed genuine concern about me. One thing that was amazing is that I told him about how I was diagnosed with rumination syndrome (RS) and how in October, things had started to changed in my vomiting. RS isn't well know or studied so I expected him to dismiss my concern about the change. I said "I don't know if this makes sense?" He stops and said that it did make sense because he himself has delt with RS since he was 8. I was blown away! He said he hadn't ever treated anyone who had been diagnosed with RS but because of his personal experience, he understood how the change would be concerning. I was blown away! What are the odds? 

Anyway, he told me that he is very concerned about the complexity of my case so he is going to reach out to the other surgeons in his group to help him come up with a plan. He doesn't think there is a magic fix but he is hopeful for a better quality of life for me. 

Two weeks ago, I went to the Mayo clinic and although some positive things came out of it, I mostly left feeling pretty disheartened. I didn't have a plan and was left wondering what the next step would be. My husband and I both felt we needed to go to Mayo clinic, so after getting home, I was left wondering why I even went. 

Well today, I now understand a small portion of why I needed to go. Throughout this journey I have always questioned what my Drs at OSU have been saying. I was always looking for an answer and I was willing to look wherever I could to find it. I felt spoiled by the Drs I had in Utah and all they did for me. So coming back to OSU and having problems again I kept thinking that I needed to find someone else to help me. I went to the Mayo clinic hoping that they might hold the key to my getting better. That they might be able to pull their resources to see something that was missing. In the end they didn't really look at my past testing and said that my anatomy looked great. I realized that they were looking at my health like a snapshot, when I needed them to see it more like a movie. They didn't really know my history and the little details were easily dismissed. 

I have recently come to accept the fact that my health history is complex but over this past year I have dismissed that complexity. I live with it everyday and feel like it shouldn't be so hard to understand. I have learned that what might be normal for someone else may not be for normal for me. It is those little details that get lost when you just take a snapshot. I haven't given the dr's here the credit that they have needed in dealing with my care. Have they made mistakes or missed things? Yes and that has been part of what has pushed me to look for answers elsewhere. Today, however, I learned the benefit of being in a place that knows your history and can look at the little details. 

I don't know what the plan is for sure but I feel confident in the surgeon and that he will work to help me feel better. He didn't dismiss me and didn't promise me that I would receive complete health again. He did however help me feel at peace about where I am right now in my health journey. He will be an integral part of my care the next few months and it will be interesting to see what happens. 

Going to the mayo clinic and seeing what else was out there, has helped me appreciate what I have right here at home. I don't feel like I need to be looking anywhere else for answers right now and that helps bring me peace, which sometime can be one of the hardest things to find when dealing with a chronic illness. 

Continuing Care

Life is an interesting thing. I have ever yet to figure it out but one thing I know is that it is constantly changing, for the better sometime and at others for the worse. But one thing that never changes is that time keeps moving forward. 

Over the past few months, really since October, my health has changed. This summer I was doing fairly well. I delt with quite a bit of pain from my feeding tube but I had it removed in September because it hurt to much to even use it. No point in keeping a defective piece of equipment especially when it is attached to the body. Getting that removed was really nice. Although I have had problems with it healing ever since it was removed. 

You might recall that was around the time of kassia having surgery. That was a very stressful time and I noticed that my appetite had decreased and I was throwing up a little bit more. Fortunately after Kassia's surgery was over, the vomiting subsided and things seamed to be back to more of a normal pace. 

A few weeks later I noticed that I was starting to throw up more again and I was starting to develop quite a bit of pain on the right side below my rib. My appetite was decreasing and nausea was increasing. I started to loose weight and get dehydrated. At the beginning of November I found myself in the hospital for a couple of days to get IV fluids and get back on track. 

I realized at this time that something different was going on. This wasn't my usual type of vomiting. It was forceful and at time really foul smelling. I started getting IV fluids through my PCPs office which has allowed me to stay out of the hospital and get by. 

I was also having problems with the jtube hole not closing so I had met with a surgeon who suggested some testing to see what was going on with it. 

In December I had an appointment with my GI Dr and explained what was going on. I was afraid that something might be wrong with the anastomosis (connection between the intestines) that was created 2 years ago to address the SMA syndrome. She agreed that something was going on and wanted to have an endoscopy done and also have an upper GI series with a small bowel follow through done. 

The next Monday I went in to have the endoscopy done. They ended up having to give me extra sedation because I wasn't falling asleep. When you get an endoscopy, usually the Dr and staff do a time out, make sure you are who you say you are and they know what procedure they are doing, after that they then give you the sedation meds and put this plastic thing in your mouth that protects your teeth and helps guild the endoscope. You can't really talk with it in your mouth. So my GI Dr was talking to the nurse about her shoes and he nurses shoes and I remember thinking they must be some great shoes so I leaned over the gurney and looked at her shoes and chuckled because they weren't anything spectacular. My GI Dr looked at me and then turned to the nurse and asked why I wasn't asleep yet. He nurse started scrambling and said she had given me the same dose I had gotten before and my GI said to push a bit more and the next thing I know I was being forced awake in the recovery room. 

My GI Dr explained what she had found but I was pretty out of it. Luckily Sean was there to get the information. At the time she was saying that there was something wrong with the shape of my stomach and the pyloric valve (the stomachs outlet) there was a sharp angulation causing it to be very difficult to get out of my stomach. She said I would need to see a surgeon but we would get the upper GI series done first. 

So I went home and literally slept the rest of the day. The amount they gave me sure knocked me out. The following Wednesday I had my upper GI series done and it showed that I had retained fluid in my stomach, even though I hadn't had anything to eat or drink since 10 pm the night before. It also showed a bit of a delay in the barium passing through the pyloric valve. It also confirmed that the shape of my stomach was not right. 

So I went back to get surgeon to see what he had to say. I went in think that they should be able to do a simple laproscopic procedure to release the scar tissue and to tack my stomach up. I was a bit blindsided when the surgeon started talking about a major operation and doing what is called a roux-en-y gastro jejunostomy. In essence they would cut my intestines and hook it up to the bottom of my stomach to create another outlet. 

I have done the major surgery before and I wasn't about to jump onboard with this. The surgeon wanted me to have a gastric emptying study done but it didn't make sense for me to do that. Reason being is that the gastric emptying study shows the rate at which the stomach empties. Well if I am dealing with a gastric outlet obstruction, the test would come back delayed and could be misread as having gastroparerisis.(where the digestive movements of the stomach are impaired). So I talked to my GI about it and she agreed that it might not be the best test. So she was going to talk to a couple other surgeons about my case. 

At this time I also decided that it would be wise to get a second opinion. This was all around Christmas time, so things seam to slow to a crawl. After debating as to where we should go, I decided to send my records back to the surgeon I saw in Utah and I was also encouraged to try to get seen by the Mayo clinic. I applied online to the Mayo clinic and the next day they called me to do a screening interview. It was going along really well until we got to the GI specific questions. The lady doing the interview asked me if I take any prescription painkillers, I said yes, and then she said "We are sorry at this time we do not feel like you would be happy with your service here and can't help you." 

I was shocked. I asked if it was because I on painkillers and she said yes. I said there isn't anyway for me to be seen there and she said I would have to go off of the painkillers but there was no guarantee. I was a bit confused and crushed. The next day I called back to get clarification as I couldn't believe that they wouldn't see me because of the painkillers. I was transferred to someone in the GI department and they said the gal doing the intake was filling out a triage form which if you are on painkillers, excludes you from being able to be eligible to be seen. So to be seen at the Mayo I had to go off of the painkillers and then get a referral from my dr. I can understand that reasoning and so I reached out to my GI dr to put in the referral and she said she would but then went out on vacation for a month. She wasn't going to be returning messages till she got back so I decided to reach out to my primary care physician and see if he would be willing to put in a referral. 

My PCP said he would and he started the process, which turned out to be quite the process. It ended up taking a month for him to be approved. By the time he was approved to be a physician, he went on vacation and my GI dr was back in. Anyway after a lot of back and forth, I finally got referred to the GI department. I called a week and a half ago to see if they had gotten my records, (they said that once they got them it would take 7-10 business days to process them and see if they would see me). When I called them they asked if I was calling about my appointment. My appointment? They said yes your appointment on April 7th. I was excited to have an appointment but April was too far away. I asked if they had a cancellation list and the GI department didn't and I would just have to call to see each day if any appointments had opened up. I told them they would be hearing from me. 

I called the next day and the gal said that they had an appointment open on the 31st. I was super conflicted because Sean was supposed to be out of town that day. I asked if they had any other cancellations and after a long minute she said they had another opening on Feb 6th. I was so excited because that was perfect! I took it. 

Tomorrow morning I meet with a GI Dr at the Mayo clinic and as of right now, all I have is one appointment. I flew into Rochester Minnesota today and my wonderful sister picked me up and is going to take to the appointment tomorrow. 

It has come up quickly and I know this is a very long post but I wanted to share what was going on and if you see pictures you know why I am at the Mayo clinic. I am so very grateful for everyone's love and support and I will try to keep you updated as to how everything goes this week!