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.

Let Go of What You Can't Change

I had my follow up with Dr. Frech about 2 weeks ago and needed to do an update on our visit. Things are still going good. I think at this point things won’t get any better than what they are now. I know that I will never be at 100% again and now it’s learning to live with life and re-learning to love the body that I have. I am trying to embrace it and move forward every day. Each day has its new challenges but this is my battle to fight and fight it I will!! Some days are bad, but there are more good days than bad.  I have been able to maintain my weight and I am at least grateful for that!

I am still having pain when I eat and am having major reflux problems only when I eat something. It is still taking a long time to digest anything I eat. Dr. Frech doesn’t think that the surgical connection has narrowed but he thinks that it could be the hiatal hernia again. I have had this hernia in the past. It was fixed with my initial surgery but the repair had come undone. The only problem now is that I don’t have enough stomach left to do a proper repair. He has put me on Dexilant, which basically is an antacid. He wants to see if the medication will help the relieve some of the symptoms that a hiatal hernia would cause. If we can at least manage the symptoms, we won’t have to surgically try and repair it. However, if the medication hasn’t helped within a month’s time frame, he wants to do a scope to make sure there is nothing worse or different going on.

The other issue I am having is this new sharp pain in my lower abdomen right around all my lower big incisions. I have thought for a while that it was related to all the new gym training I have been doing. I have tried to do a lot of stretching/strengthening of the area but it hasn’t relieved any of the pain. I mentioned the pain to Dr. Frech and he doesn’t think it is muscle related. It may be the start of another hernia forming where the feeding tube was placed last year. He wants to closely watch it. If the pain gets worse, I am supposed to see him right away.

So for right now the plan is to keep doing what I am doing. Maintain my weight and focus on my calorie consumption. I am to take the new medicine for a month and if it works, I will continue taking it. If it doesn’t work, I am supposed to go in for another scope. If I don’t have to have the scope, I don’t have to see Dr. Frech for 3 months. Hopefully this medication will work and the hernias wont cause any problems!! 

Long Over Due Update

So I haven’t done an update to the blog in a long time. I spoke in church this past week and someone had pointed out that they haven’t seen an update in a while so I thought it was about time to update everyone!

I saw Dr. Rasmussen for a follow up in July. I have officially graduated from the monthly visits! Yippee! I will just see him on a needs basis. This is a huge mile marker for me!

Things aren’t much different in the sense of how I am feeling. I have basically accepted the fact that this is the way my life is going to be from now on and am just learning to live with it. I know for certain if I stay on top of taking my Zofran that my day will be manageable.  Each day has its challenges but I deal with them and always try to have a positive attitude. All I can do is smile and sometimes fake it until I make it. But I know that I will always make it!

There have been a lot of personal changes that have taken place in my life in the past couple of weeks as well. For those who follow my life closely, I have started dating again! I know, crazy right??!!  I haven’t been on a date since before I was diagnosed and that’s been over 3 years!  It’s hard getting back into it and things have changed so much, it really is crazy! Someone also recently reminded me of why dating sucks and I why avoided it for so long., I hate being a vulnerable person and dating tends to do that to you!  But I figured things are as good as they are ever going to be so it’s time to start that again. It is however hard to let someone in and know this side of my life but I figure in the end it will hopefully all be worth it. However, this is also a huge part of my life and it will take someone who is caring and compassionate with this illness to catch my eye!

I have started hiking again as well and am loving every minute of it! I try to do at least one hike a week.  It feels good to get out and in the mountains and be surrounded by beauty and feel the peace that’s only found in the mountains. You do however forget certain muscle groups that are required to hike when you haven’t been allowed to use them for 2 years! It does feel good though to be using those muscle groups again. Nothing that a hot shower can’t cure, right?!

I also recently signed up with a personal trainer at the gym and have slowly started to get back into it. I want to do some toning but I have to be careful to not lose any weight. When I first started at the gym however, I felt awful charlie-horse like pains in my upper abdomen. I saw Dr. Rasmussen and he thought that I was overdoing it and that I strained some muscles in my abdominal area. I was instructed to not do any abdominal toning for a week or running. He also gave me some abdominal strengthening/stretching exercises to do to try and engage those muscles again without overdoing anything. I have been doing the stretches slowly and the pain seems to be easing up in regards to the upper abdominal pain. It sucks that I can't take any ibuprofen, I am sure that would help!

I am mostly maintaining my weight. It fluctuates all over the place depending on the activities I am doing. I can lose 5 pounds if I spend too much time at the water park and then I spend the whole next day trying to recover. My body will always handle things differently from how it used to, which is something I have to remind myself of.  I have started incorporating more nuts into my diet and that seems to help make up for the loss of calories when I am not eating enough.

I am continuing to do the monthly vitamin B-12 injections and have finally started noticing a difference in doing that. My energy levels are increased for about 3 weeks and then I will feel a drop in those levels around the end of the month. I look forward to that shot each month!! 

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I will see Dr. Frech in the middle of August for another check-up. Hopefully my weight will stabilize and things will still be going OK. I do think that my iron levels are still low so we may have to do a re-check on those. I am sure this will always be a balancing act.

Thanks to all those who continue to offer their unwavering love and support. I finally feel like I am in a good place and am finally doing the things that make me happy again! This will be a lifelong battle and I hope that I can continue to be a beacon of hope for those out there who are struggling with those invisible illnesses.