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!