Long Over-Due Update

I have received so many phone calls and text messages the last couple of weeks from people asking how I have been doing, so I wanted to give an update. It’s obviously been a while!

Life is so good right now. My health finally feels like it is stable and nothing too dramatic seems to be going on. My weight has also been stable. This makes me very happy…because as much as I love my Drs., I am OK if I don’t see them at their offices for a while!

Of course, each day definitely brings its challenges but it is learning to live with those challenges and make the best of it. I am just maintaining all of my medicine and staying on top of symptoms. I take all my daily meds and am still doing the monthly B-12 injections. I have been continuing to work out at the gym and run and that has helped a lot. Being sore makes me feel alive again! I get pretty bad muscle cramps in my legs, which makes me concerned about my potassium levels. When this happens, I just make sure to increase my water intake and add Gatorade into the mix as well. Also, some exciting news...I have tried red meat a couple of times over the last 3 months!! It didn’t make me too sick, although I could tell that my body had a harder time digesting it. Eating red meat is a habit that I am not going to get back into. Some days I feel like I can eat more and other days I don’t eat much. I still try to do a daily protein shake and protein bar to make sure I stay on top of my protein levels. I also try to eat a lot of bananas to keep on top of my potassium levels. Potassium infusions are no fun!  I eat a lot of chocolate and I am trying to cut that habit as well. I still throw-up on a regular basis, but it’s something that doesn’t bother me anymore. It’s one of those things I have accepted and just deal with. I get pretty intense and painful hiccups if I eat too fast, eat something wrong, or lay down too soon after eating. These are about the only things that are going on. But once again, I don’t think these things will ever change. I just make the best of it and try to not let it control my life!

I have follow up appointments with both Drs. Scheduled for May. At these appointments we will do a full check-up and check all the lab levels. I haven’t been to the Dr since December and am very proud of myself! Hopefully things continue on this upward trend!

Thank you to those who continue to follow this crazy health saga I have lived. It is because of your continued love and support that I am a strong person. This has been the hardest thing that I have gone through in my life. It is something that has forever changed and shaped my life. But it is because of the support of so many people and the love of my family, friends, and more importantly my Heavenly Father that I am even here today! I wouldn’t trade this experience for anything in the world! 

ER Visit, Bowel Blockage, and Hospital Stay

I started feeling sick on Sunday night. I just chalked it up to eating something new and thought nothing more of it. I took my normal meds and everything seemed fine. On Monday, I went and played racquetball in the evening and struggled. I was in pain and kept seeing stars but I pushed through and just attributed it to not eating more than a banana that day. On Tuesday, I woke up not feeling well but pushed through the day at work. I kept taking all my meds and I wasn’t able to eat because I was so nauseated. That night, I went home and tried to eat some soup but became sick very quick. I threw up for a few hours and was in a lot of pain. But I didn’t think anything of it, once again sometimes this is my normal so I just took a bunch of meds and went to bed to try and sleep it off. On Wednesday morning I woke up and was just in a little bit of pain and still nauseated. I went into work and was only able to make it a half day. I went home and took some Percocet and more Zofran and tried to just sleep it off. By the evening, I felt a little bit better and was able to eat some soup and keep it down. At this point, I thought it was the flu so I just went to bed. On Thursday I woke up and was in a lot of pain and at this point the pain meds I was taking were no longer helping. I went into work and called Dr. Frechs office. As the day went on, I was still very sick and in pain and hadn’t heard from the Dr’s office yet so I called Dr. Rasmussen’s office and let them know what was going on. They called back an hour later and told me to get a CT scan done. At this point, I was already on my way to the ER. I needed some sort of relief and I knew that there was something more serious going on.

In the ER. I wouldn't take off my boots in hopes of going home! Ha.

I checked in at the ER and was seen by Dr. Jemmett immediately. He ordered pain meds right away and also ordered an x-ray. He was immediately suspicious of a bowel blockage. They had given me morphine and Zofran and nothing was touching my pain. They also drew some blood for lab work and took a urine sample. I had the x-ray done and Dr. Jemmett came in to give me the bad news. Bowel blockage and intestinal dilation, just as he suspected. Then, if this wasn’t bad enough, he told me I would need to spend the night in the hospital to which I flat out refused. He explained the risk I would be taking if I went home and he highly suggested that I spend at least the night. He said he would page Dr. Rasmussen and if he said that I needed to stay the night as well, then I would agree to it and only if Dr. Rasmussen was the admitting Dr. and not a hospitalist. He also ordered dilaudid for the pain since the morphine wasn’t working that well. I also got a shot of bentyl in my hip and a shot of relastor in my shoulder. The bentyl was to help relax my intestines and the relastor was to counteract the opiates in blocking the receptors in my intestinal tract so they wouldn’t slow down the motility. After all this, Dr. Jemmett informed me that Dr. Rasmussen also said I needed to spend the night and he would be admitting me. I was admitted to the 7^th floor later that evening. I will spare all the details of this lovely stay but this was by far the worst hospital stay I have ever had. Ever. I had to have enemas to try and clean out my colon and was given pain meds every 2 hours and fluids as well. Of course, you don’t sleep in the hospital so this only adds to the pain and misery. By morning, I wasn’t entirely cleaned out but had to get out of there. When Dr. Rasmussen came in, I told him he better sending me home and that I was fine (although not 100% the truth). He agreed to let me go and also let me know that my labs were still a little off and that my white blood cells indicated either an infection or something viral going on which was probably attributing to why I didn’t feel so good. I feel like the bowel blockage was just attributed to having crappy moving intestines and the combination of taking pain meds that just slow down the colon as well. 

This was the picture in my room. I thought it was funny because I felt like a prisoner there.

All my lovely bracelets!

The schedule board in my room!

So right now, I am still on all the normal medicines and have just increased the dosages of Miralax I take every day and have also added Milk of Magnesia to my daily regimen of laxatives. I am waiting to hear from Dr. Frech’s office to see what are the next steps we need to take. Nothing like a little weekend jaunt in the hospital! I know I should be grateful that I have good Dr.'s who take good care of me (and I am) but I am running out of patience with my health! 

Are You Kidding Me?

I feel like the last couple of weeks have definitely been a whirl wind and my health and has not gotten any better but not any worse.  I have been doing weekly iron infusions as ordered by Dr. Rasmussen to try and get my iron levels back up to par. I have had several labs done and those also revealed nothing alarming besides the low iron levels.

Weekly Iron Infusion

I had a follow up appointment with Dr. Frech and Dr. Rasmussen this week as well.

DR. FRECH:

Since my last appointment with Dr. Frech, I have lost 11 pounds. He’s not super excited about this fact but my weight is what it is. I try my best every day to eat and just sometimes forget or am so nauseated that the idea of putting anything into my mouth seems out of the question. Dr. Frech has also switched medications around again to try and relieve the symptoms of being chronic constipation (sorry for the TMI moment…haha). He believes that if we can get this under control that it will relieve my symptoms of reflux. However…he suggested something I have never even thought would be an issue in my life. He says that for people who have chronic constipation they can do a subtotal colectomy.  When I heard these words come from his mouth I just stared at him in disbelief. I cannot believe that this is a maybe down the road. I am so against this. I think at this point, I would have to be near death for this to happen. I am 28 years old and do not want to deal with having this done. Let alone the fact that nothing to this point has gone right. He also suggested doing a test to pinpoint the problem areas of my colon to which I refused. I am against having anymore testing or procedures done. I am tired and I am tired of this being my life. I can still function everyday just fine. It’s something I have learned to accept and deal with and I try to not make it anyone else’s problem. So at this point (at least on Dr. Frech’s end) I am just on medication symptom management until my follow up in February next year!

DR. RASMUSSEN:

Dr. Rasmussen is not concerned with my weight loss because I am still with in normal limits. I will just have to be careful to not dip too low. He did talk to some of his colleagues about possible procedures and there are a few things that can be done now but none of them have long term success. He also said that at this point, he would adamantly advise against having a subtotal colectomy. If I was dying, and couldn’t deal with what I do every day, then maybe. And that’s the biggest maybe of my life! I also told him that at this point, I don’t want any more testing or procedures done. I am at the point that I want my life to be something different than this story it has been for the past 3 years. So on Dr. Rasmussen’s end, I will have my yearly labs done in March and we will go to that point.

MAYO CLINIC:

I have also been pre-approved to go to the Mayo Clinic in Arizona. They are basically waiting for me to decide what to do. It will be a game changing decision and I don’t know if this is what I want anymore. I feel like I do pretty well every day and I don’t want to be anyone’s guinea pig anymore.  I definitely have my moments and days but it’s nothing that some medications can’t cure.

GAME PLAN:

So here’s where things stand today. I will finish my iron infusions next week and continue my B-12 injections monthly and then all of my numbers should be stable at this point. I don’t want to do anymore testing for anything. I will try my best to manage symptoms. I also will need to make a decision about the Mayo Clinic and then we will go from there. 

Dr. Rasmussen Appointment

I had my appointment with Dr. Rasmussen to go over the results from the esophogram and see about the possibility of having surgery to fix the hiatal hernia.

This appointment did not go as well as I was hoping it would. So there are several issues that have presented and not a whole lot of options.

• The first problem is that I don't have the part of my stomach to allow for a wrap. I don't even have a gastric remnant (leftover stomach piece) that could be used to do this either (my stomach was removed entirely from my body). In a normal Roux-en-Y surgery they leave the stomach to allow for digestion help. One again, lucky me, its gone. 
• The second problem is that I just have a crappy digestive system that doesn't want to work properly and I also have crappy luck. So there aren't a lot of surgical options. 
• So there is a procedure called Stretta. It is done by a Gastroenterologist and Dr. Rasmussen isn't sure if there is someone in Utah certified to do it. I believe that it just got approved by the FDA but we aren't sure if the insurance company will cover it or who could even do it. They basically go in and with a scope and a balloon and cauterize the bottom part of your esophagus to create scar tissue which will reduce the amount of reflux. Sounds fun.
• The other procedure is called LYNX. Also not sure if it is even FDA approved but won't be available for one or two more years. They place a magnet on the top part of your stomach and somehow this helps also reduce reflux. 
• If they go in and do anything surgically to the esophagus, Dr. Rasmussen is worried that with the swallowing problems I am having, we will only create a much bigger problem.

So right now, I am stuck in the same boat. The boat where I struggle to eat and be pain-free. The boat that doesn't give me any new options to help but to only manage symptoms. The boat where I am standing alone trying to keep it a-float by myself. The boat where I go on a trip for a weekend and loose 7 pounds cause I get sick and cant eat anything. I am very tired of  being on this boat. I would like to jump ship and find a new boat!! 

I am now also anemic and have to have an iron transfusion this week. 

So the plan for now is to keep trying these new medicines and see Dr. Rasmussen in December after I see Dr. Frech and get his opinion on these two procedures. Dr. Rasmussen will talk to some of his colleagues during this time and see if  any of them have any ideas of what to do. So basically, no new hope or resolutions. I am starting to vomit a lot more as well and that is not helping the whole situation. I am tired. Period.

Dr. Frech Esophogram Results Appointment

I had my follow up appointment with Dr. Frech this week. Wasnt a super informative or up-beat appointment. I feel like I may be on this never ending cycle of switching drugs and trying something new. Here is where things stand with Dr. Frech:

Nice View from Old Mill Office in Cottonwood Heights

• He doesn't want to sign off on me having surgery...ever again. Which I totally get. Believe me. But...if there is a way to fix a problem, I want it done. Period. No ifs, ands, or buts anymore. I am in charge!  I have to live like this. Everyday. 
• We have switched medications from Linzess to Amitiza. This is stronger but also has sucky side effects to which I have already noticed. It feels like I am having an asthma attack and it also adds to the nausea that is already out of control. Dr. Frech is hoping that if this medicine will cause a bowel movement more than every couple of weeks (I know...too much information), it will relieve some of the pressure that the stomach sphincter is under which will in turn relieve some of the severe reflux. This sounds like a long shot to me. But, we are going with it at this point. 
• I am going to try and switch myself from narcotics to just tylenol and tramadol. Also don't know if this is going to work. It is so painful to eat and I spend hours refluxing everything I ate, that it causes severe spasms into my chest. By bedtime...pain wise...I am done.
• I had labs drawn again to see why I am so tired. The labs drawn included a CBC, Vitamin B-12 and Folate, ferritin, iron, and iron/TBC. I will wait to hear from his office on results. We are also checking the B-12 levels to see if we can add another injection in and do it twice a month instead of once a month. I have to have the labs re-drawn in 3 weeks to see how much the B-12 levels drop. Maybe this will help with the energy issue.
• I am also to stay on everything else to keep other symptoms at bay. I take a daily regimen of norco, tramadol, tylenol, zofran, promethazine, miralax, dexilant, amitiza, a B-12 injection, plus all other vitamins. Some days more and some days less. I know this could be worse but it irritates me that none of this stuff is helping me to feel better. It's just survival mode at this point.
• I am to see Dr. Frech in 4 weeks and see where we stand. As far as fixing the hernia, he had no options.

So I also have an appointment to see Dr. Rasmussen this week to see if there is something he can do to fix what's going on. Maybe he will have more hope to offer. 

Here is my weekly motivation. I feel like I am rapidly loosing steam but know that there is nothing I can do, but trust in God and the plan he has for my life!!

Modified Barium Swallow/Esophogram

I am scheduled to have the modified barium swallow test done and the esophogram. It is to be done with a Radiologist as well as a Speech Pathologist. I am having this test done to verify if there is now a swallowing disorder or if the esophagus-freak-out is due to reflux.

A modified barium swallow test isn’t much different than a regular barium swallow. You still have to fast for it and you still have to drink/eat disgusting barium laced items. Luckily, for me, Cody is the Radiologist. He has done all of my other barium swallows and is familiar with my case. But, I will tell you this, I hope that I never ever have to do this test again! I have a hatred for barium. Haha!

So they are able to knock out the fact that I have a swallowing disorder right off the bat. This is good news.

Cody believes that all my problems are related to the hiatal hernia and the reflux. He said the reflux is severe enough and no amount of medicine is going to help it. I have been taking Dexilant for the last few months as well. My last swallow test revealed mild reflux but it has gotten way worse. He also said that size wise, my stomach is the size of a small baseball. It may not function at baseball size but there is the possibility of there being enough stomach there to do a nissen wrap and fix the hernia. The hernia is small but since my stomach is so small, that’s probably why I notice it more and it causes me pain. It appears that the lower portion of my stomach that is connected to intestine is functioning how it should be.  He also noticed that my esophagus spams out and shrinks way down. He said that this can be attributed to the multiple feeding tubes or the severe reflux. He also noted that the muscle above the stomach is lazy. He said that it shows no control. He said that if we can get the hernia fixed and get the muscle to start functioning again, that this should knock the rest of the problems into place and things should function as they are supposed to. He said there appear to be no other problems. This is great news to me. At least I know now that there is something to explain all my pains. Once again!

I have an appointment with Dr. Frech on Tuesday and Dr. Rasmussen on Thursday. By the end of next week, hopefully some decisions will have been made and we can move forward with treatment. 

Another EGD...And More Problems!!

So I haven't done an update in a while because things have been going so well. At my last appointment with Dr. Frech, we discussed the problems I was having with reflux. We were going to try the Dexilant to try and manage the symptoms. After about a month or so, I noticed the symptoms were getting worse and the Dexilant wasn't really helping the reflux. I called Dr. Frech's office and we scheduled another scope to see what was going on.

I am so used to having these done, they don't really phase me anymore. I checked into IMC and got all prepped and ready to go. I honestly didn't think that we were going to find anything wrong. Apparently my intuitions about this were wrong. Again.

All prepped and ready to roll!

My cute sister took the day off to come with me!

We had toyed with the idea for a while about the possibility of the hiatal hernia coming back. It appeared on some scans and then not on others. However, Dr. Frech found that the hiatal hernia had indeed come undone and is back. It also bigger than the one he saw on the last EGD. He also thinks that I now have a swallowing disorder. He said this doesn't surprise him with everything that I have gone through in the last 2 1/2 years and basically having to learn again how to eat. He wants to do more testing next week to evaluate this. He said there are different types of therapy that can help with the swallowing disorder. For now, he has increased some dosages on medications and we will try them for a month. If the reflux symptoms cant be resolved with medications, he said we may need to address having surgery again to fix the hernia. The only problem with this is that I don't have enough stomach left to surgically repair the hernia. It would have to be some sort of creative surgery in order to fix it.

Right now, I am just waiting to hear from his office to schedule more testing. Hopefully get this done quickly and hopefully the medication works. I see Dr. Frech in November and should have a clearer idea of what to do next. I am tired of fighting this, but I also know that I don't have any other choice.