Dr. Frech, My Daily Hell, and a Breakdown

I think that it is time that I do an update. I was holding off mainly for the hope that I could say I am feeling better and things are going great but I unfortunately cannot say that. Not much has happened since the end of January. I feel like things are going bad again and I feel sick all of time. I eat and have to instantly use the bathroom. I throw up a lot of the time and the pain has come back in my right upper quadrant. I am so dizzy every time I stand up. I am so frustrated.

I also want to mention that I met a girl at a boutique that has a gastric stimulator for gastroparesis. Her symptoms and mine are exactly the same. She found a Dr. back in Boston who was able to help her. She suggested that I send him my medical records and see what he thinks about my case. I will wait to see what Dr. Frech decides to do before I go in that direction.

I see Dr. Frech a few days after I see Dr. Rasmussen. I talk to him about everything that Dr. Rasmussen suggested and he shoots down every idea that Dr. Rasmussen suggested. He doesn't believe in the Sphincter of Oddi Dysfunciton so he doesn't think that’s the problem. He also believes that removing dairy from my diet is not a good idea. He actually wants me to increase my protein shakes to 3 times a day to try and get some weight on me.  He is leaning more towards the small bacterial overgrowth and decides that this might be the next route. He also decides to repeat my liver labs to see what is going on with my liver, since most of my pain is centered in that region. Depending on the results of the lab work, he may possibly order an MRI of the liver (already had a normal one done in February of 2013). He doesn't want to do any more invasive testing unless there is a very clear reason to do so. I am OK with this, but I also want answers. Nobody should have to go through what I have gone through to only continually feel miserable on a daily basis.

At this point, I finally hit my shutting down point for this first time in 9 months. I don’t remember much more of what was discussed at this appointment. I can’t even look at Dr. Frech because my eyes are filled with tears and I don’t want to look like a wuss. I feel like I have been so brave up to this point and have always tried to face what I am facing with a smile. I can’t. Not anymore. The tears flow rapidly and Dr. Frech seems lost as to what to even say to me. For the first time since all of this began, I feel completely and utterly hopeless and I think both of my Docs feel this way too. I don’t want to live the rest of my life like this and after how things went today, this may be the long dark road I have to walk. I spend the drive home mostly in tears questioning everything. I can’t even think about my health without emotionally losing it. I don’t go back to work for fear of someone asking how my appointment went and losing it all over again. I am an emotional wreck and can’t seem to pull myself together. I am afraid that I am going to slip into dark depression and stop eating again. I am afraid of everything again.

I get my lab work done and feel like maybe I should contact the Dr. in Boston. At this point, I have absolutely nothing to lose. I spend the rest of the day gathering my medical record, which includes a second trip to Salt Lake and $40.00 later. I contact Dr. Yood’s office in Boston and they want to see my medical record. They will contact me once the Dr. goes through everything to see if there are any solutions he can offer me. I am not in any way shape or form unhappy with my Docs. I am grateful every day for them. I just don’t know where to go or what do at this point.

So currently, I am sending my records to the Dr. in Boston. I am waiting to hear from Dr. Frech’s office about my liver labs and if there will be any more testing ordered. I am always trying to eat more and keep it on the inside not the outside of my body. I see Dr. Rasmussen in a month and I don’t currently have an appointment scheduled with Dr. Frech.

Heaven help me, and fast!!

3 Months Post-Op

I first see Dr. Rasmussen at my 3 week follow up. This week also marks my 3 month post op mark. I have lost another 7 pounds.  We talk extensively about what might be going on and what the next options could be. Dr. Rasmussen suspects either a Sphincter of Oddi Dysfunction or a clogged bile duct to explain the pain in my right upper quadrant. He is suspicious mainly because the pain gets worse after eating. But he says because of my newly formed anatomy I cannot have the test done to prove this is what I have. He wants me to address the issue with Dr. Frech since he would be more of an expert and see what he thinks. We also talk that my stomach just may not have any function and that removing the rest of the stomach and connecting the small intestine straight to the esophagus might be an option. He doesn’t want to go there and neither do I. The next thing that we talk about is that I may have food allergies. He wants me to avoid all milk products for a month and see if this helps. I am not too keen on this idea for several reasons. Number one I saw a food allergist for years and he never helped me. He was the one who actually suggest I see a gastro Dr. because I had a bigger problem than he could help me with. Number two, I am already having a hard time maintaining my weight let alone gaining any weight. Cutting out milk products means cutting out my protein shakes and bars, and I feel that’s the only thing keeping my going at this point. So his plan is to cut out my dairy and see him a month. He will also repeat labs at my next appointment to see if all my low numbers have come up at all.

Dr. Rasmussen and Scope Results

I see Dr. Rasmussen and he goes over the results of the scope. He wants to put me on Carafate for 3 weeks until I see him again. He says the pictures illustrate that there is some inflammation in the stomach and that the Carafate will help with this. He doesn’t want to change much more but agrees to up the protein shakes. He is very excited that so far the surgical anastomosis has stayed wide open and the surgery appears to be a success!

I am to continue taking the Welchol and add the Carafate. He says the next step might be to add in a probiotic if some of the symptoms don’t get any better. For now, just work on eating more to try and gain some weight and take the new medicines. I am to see him in three weeks for another follow up.

Dr. Frech and Scope Day

I see Dr. Frech on January 27^th and am feeling all over the place at this point. I have good days and I have bad days but don’t feel awful all of the time. The only thing is that my body can’t seem to decide if the surgical anastomosis is too small or too big at this point.  I sometimes get sick when I eat and sometimes I don’t. At this point, I don’t know if it is the food choices I am making or if something is up with the connection again.  Dr. Frech and I decide to do another scope since one hasn’t been done since the middle of October. I want Dr. Frech to do it before I see Dr. Rasmussen again at the end of the week. We get it all scheduled and you know how scopes go from this point.

My little sister takes me this time. We go to IMC and get all checked in. It only takes 3 pokes to get an IV started. I go back the procedure room and talk to Dr. Frech for a minute and when things are ready to go, I am given the medicine and the world goes black. I wake up and the first thing I do is look at the clock. I can always tell by how long the procedure took on what they found. It was about 10 minutes from the last time I looked at the clock before I was knocked out to when I wake up. This is a perfectly normal scope time. Nothing wrong. Good!

Dr. Frech comes and goes over the results and everything looks great he says. The anastomosis is about 3 cm and is wide open with no inflammation. Great! It seems that the idea of the surgery worked and hopefully things will look up from here. Dr. Frech puts me back on Welchol to help with some symptoms and also wants me to increase my protein shakes to at least 2 a day to stabilize my weight loss. He wants to see me in a month. I am supposed to see Dr. Rasmussen the next day.

Before and After Pictures and Numbers!!

HOLY COW...Check these out!!

 This picture was taken on my birthday in January of 2013.

This picture was taken in June of 2013, about 2 weeks before the initial surgery.

This picture was taken in San Diego in October of 2013. 

This is about 3 months post-op initial surgery.

This picture was taken on New Years Eve 2013. 

This is 4 weeks post-op revision surgery!

• At my heaviest weight, I was 222 lbs. I now weigh 125 lbs. and have a BMI of 19.5. 
• A BMI of 18.5 is considered underweight. 
• I wore a size L-XL shirt and a size 16 pants.  I now wear a size XS-S shirt and a size 4 pants. 
• My feet have lost a full shoe size. None of my rings fit. I had to have all my watches re-sized!
• I have lost 97 lbs. in 7 months. I think you can tell the most in my face!

Never in my wildest dreams did I think I could be this small. It never even crossed my mind that I would battle becoming underweight once I had this surgery.We expected weight loss, but not this much and this fast. The weight loss has been a blessing but at what cost and where do you draw the line?

I guess for now, we'll enjoy the shopping for new clothes and not so much all the pain that comes with!

5 Week Post-Op-Dr. Rasmussen

I go to see Dr. Rasmussen for my 5 week follow up. Things are not going as well as we both expected. I still get sick and have severe pain any time solid food hits my stomach. I am doing much better with liquids, which is an improvement from the initial surgery. I feel like I am falling into the same pattern as before in regards to doing well and then once food was re-introduced, the pain and sickness comes back. The only difference this time around is that I actually force myself to eat since I cannot afford to lose a single more pound. If I lose one more pound, the feeding tube will be placed again.

Dr. Rasmussen thinks that this may have turned into a case of "Goldilocks". The first surgery created an opening that was too small. The second surgery created an opening that may be too big. It may become an issue of finding an opening that is just right. The only issue is that since it has only been 5 weeks, it is too soon to know if this is the case. I need to heal more and re-gain my strength. So now I have been lumped into the waiting game category to see what the opening will do.

At this point, I can no longer muster any more courage and my brave face falls to pieces.  I lose it and have an emotional break down right in front of Dr. Rasmussen. Luckily, he is very caring and doesn't seem too bothered by my tears and tries to convince me that with time, things will turn out OK. It gets harder every day to stay positive and have a good attitude, but I am really trying. I don't know if there will ever be a light at the end of this tunnel and this is now the way my life has become. I also don't know if I am prepared to live this way if that is the case. He wants to see me in 4 weeks and to keep a food journal. The reason for the journal is to see if food in general is causing me pain or food choices are causing the pain. He also wants me to see Dr. Frech to see what he thinks about the healing process and sizes of the openings as well.

The more time that goes on, the worse the symptoms are getting. The pain becomes more intense every day and it is becoming harder to eat. The hard part this time around is now I actually want to eat. I do have more energy so that has also improved from the initial surgery. I haven't passed out either. But I still throw up when I eat, which is becoming a little worrisome. But all I can do now is wait and see what happens…again! 

Post-Op Progress One Month

I see Dr. Rasmussen a week after being discharged from the hospital. At this point, things seem to be going very well. I feel like I actually have some sort of energy and that I am not going to pass out every time I stand up. I am still on a liquid diet at this point and liquids go down just fine, which is a big improvement from the previous surgery.

We go over all the typical post-op questions and he seems pleased as well. He adds some medication called Protonix to help with the burning sensations I am having in my stomach. He also wants me to use a steroid cream for the rash since it looks worse. I get to move to Stage 3 of my new diet which includes soft protein foods. He also says that if I lose any more weight, he will put the feeding tube back in. I have lost 12 more pounds this time around. I am to see him again in 3 weeks.

I see Dr. Frech the following week to follow up with him as well. He is not happy about my weight loss and is not convinced the surgery will work. But he says I look good and we are being hopeful that all will continue to go well. He agrees with Dr. Rasmussen about the feeding tube as well. He wants me to take it easy with the foods and see him in a month to address my progress.

I spend the next weeks trying to advance my diet. I am to the point I can take all my vitamins now, which is also progress. However, the more time goes on, the more pain that starts to come back.

5 weeks post-op and I can only drink liquids without pain. Eating is very painful again but I try my best because I cannot afford to lose any more weight. I am officially 100 pounds lighter.