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.

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. 

Dr. Frech 6 Week Erythromycin Check

I have my 6-week follow up appointment with Dr. Frech. Things seem to be going OK. I have gained a pound according to his scale so he is very happy about this. We decide to go off the erythromycin for the gastric stimulation. It is not helping as much as it should be so he says it’s not worth staying on it for a long period of time unless it was without a doubt working. The promethazine is helping with the morning nausea. I will continue to take that at bedtime. I also have started waking up with a taste of blood/metal in my mouth. He is hoping that this is related to taking the erythromycin and not some sort of bleed somewhere. I am supposed to watch this and see if it goes away after being off the meds. We do some adjustments to pain meds and hopefully I won’t become so dependent/tolerant of everything I am taking. He thinks my biggest problem in relation to pain is that I don’t have regular or frequent enough bowel movements (sorry if that’s too much information for you). He is hoping that if we can make these more regular that it will help alleviate some of the colon pain and nausea. He adds medications to help do this as well.  He also thinks that some of my pain is related to surgical adhesions/scar tissue. A good majority of pain is centered over where the J-tube was surgically inserted on my left side. The only way to alleviate that pain is surgery which in turn also creates more scar tissue.

Right now the plan is to make the medication changes and see if that helps anything. I am to continue the vitamin B-12 injections for increased energy. I will see him again in 2 months. If nothing has changed we will consider doing something more than making medication changes. I will see Dr. Rasmussen again in 2 weeks and hopefully he will have some more ideas to throw into the pot.

I also attended a meeting last night on medical cannabis. It may be something that I will have to do further down the road. But for right now, I still have options and I don’t think things are spinning out of control. I live in pain every day but I can still function with that pain. I am able to eat/drink the needed calories. So hopefully the new medication changes will help something. 

Erythromycin Treatment

So it’s been a while since I have done a blog update. I finally got the approval to go ahead and start the new treatment.

I have been on it for about 3 ½ weeks now. I go to the hospital once a week to have my potassium and magnesium levels checked. I did my EKG 3 days after starting treatment; my QT interval is still prolonged but not any higher than it normally runs. My potassium and magnesium levels are continuing to rise. I am at least grateful for this, doing an IV potassium infusion is the worst! It feels like your veins are being burned out of your body!  (I have had 4 potassium infusions)

I wouldn’t say that I have noticed a tremendous difference of being on the medication. But I do struggle to eat way more if I forgot to take the medicine, if that makes any sense! It still is very painful to eat and my weight continues to drop. I try to drink more protein drinks and eat protein bars. My pouch seems to tolerate these. The pain in my left side is quite significant. There are some days where I can’t even take a deep breath for fear of shooting pain.  I have to take narcotics at night in order to function the following day. I take the newly prescribed promethazine at night and that has significantly helped reduce the waking up nauseous feeling. I haven’t dry heaved in the mornings for a couple weeks now!

I have also done 2 monthly injections of the vitamin B-12. I am still exhausted and fall asleep all over the place. I feel like I could sleep 18 hours a day and that still wouldn’t be enough. I am so exhausted by the end of the day it is kind of pathetic.

I have a follow up with Dr. Frech in a week and Dr. Rasmussen in July. 

Cardiologist Approval for Treatment

I went to see my Cardiologist last week to get an EKG done and the approval to start new treatment for my gastroparesis.  They did the EKG and he said the QT interval is a little more prolonged than he would like to see it. He wants Dr. Frech to go ahead and start the treatment but put some strict guidelines in place. He wants a repeat EKG done 3 days after I start taking the medicine. If the QT interval is more prolonged he wants the treatment stopped. The other thing he wants monitored is my potassium and magnesium levels. He wants weekly lab work done to check these levels for the entire duration of treatment. He also said if I feel any worse or notice my heart acting irregular, than I will need to stop treatment.

I also started my B-12 injections last week. Haven’t noticed a difference yet but I am sure that it will take a while to build up in my system.

Just waiting to hear from Dr. Frech’s office to get everything ordered so I can start this new treatment.

Yippee!!

Dr. Frech Visit and New Plan

I had my follow up with Dr. Frech. Oh boy. It was a bit overwhelming and I still feel like I am in the same boat.

I am just going to copy the office note from Dr. Frech so I don’t have to re-write the information from an hour long visit!

(I took out most personal information)

Noel understandably is frustrated about her up/down course as we previously shared optimism at her last clinic visit that her condition was seemingly improving following her most recent exploratory laparoscopy with adhesionlysis. Unfortunately, her symptoms have slowly worsened since her feeding tube was removed following her last clinic visit and she had become more reliant on oral nutrition. She has, in fact, lost 7 pounds since I last saw her and only consuming 900-1000kcal daily as she has pain with eating.

 I am perplexed by Noel's persistent symptoms and share in her frustration with seemingly worsening symptoms since last seen. Her symptoms seemed to improve significantly with her most recent adhesionolysis surgery suggesting at least component of adhesions contributing to her symptoms. She really hasn't ever become accustomed to reduced size of gastric remnant following initial surgery and hasn't been able to eat normally for over a year now. I think a component of her poor tolerance to eating is due to reduced gastric compliance from not eating normally for so long…

I have recommended the following:

1. Continue linaclotide 290mcg daily. Consider adding Miralax 1-4 capfuls daily if persistent constipation.

2. Noel previously did not tolerate metoclopramide and unable to obtain domperidone. I am concerned about starting erythromycin as prokinetic, which may be a potential therapeutic option for her though already on multiple other drugs that prolong QT. She is going to see her cardiologist within next week. She has underlying Wolf Parkinson White and I'm really not sure about adding erythromycin as another potential QT prolonging agent. Will hold on doing this for now given already taking Zofran… and tramadol. My hope would be that by slowly increasing her diet and thereby increasing her gastric compliance, she will then be able to tolerate higher volumes of food though she hasn't not been able to push herself to do thus far due to postprandial pain and nausea…

3. Begin bedtime promethazine to help control nocturnal nausea. Continue…zofran during daytime with hopes this allow her to better tolerate increased PO and improve gastric remnant compliance.

4. Begin monthly B12 injections given fatigue and "low normal" B12 levels. Hold on adding iron though iron slowly dropping likely related to bypass anatomy and poor diet.

5. Continue Ensure or Boost at least 3 times daily. She is adamant about not having nasoenteric feeding tube replaced thus will have to try best to optimize oral nutrition.

I asked her to contact my office in the interim if she continues to lose weight and I asked her to have her cardiologist send repeat ECG results (prior QTc 12/2014 ECG 432ms).

It was a long visit and a lot of information. But I am so grateful that Dr. Frech always takes his time to go over everything with me and works so hard to figure out some solution. I think at this point, things are going to just be trial and error until we can resolve some symptoms. I really am not super concerned about my weight anymore. I just need to still step up my eating and push myself and hopefully if I can eat semi-normal meals than the other symptoms will resolve themselves. The pain issue is a whole other issue and I guess we will cross that bridge when it becomes unbearable again.

These gave me a good laugh!

One Year and an Update

Another year has come and gone since my April surgery. Last year at this time, I had my feeding jejunostomy tube placed. I also developed a small bowel obstruction and had emergency surgery 4 days later. I look back on this experience and can’t believe everything that happened. This was by far one of the most awful, painful, and scary things I have gone through. I always catch myself glancing at my Frankenstein looking belly and all of its scars and how each one tells a different story of the past two years. I really can't believe that it has been two years since we finally got aggressive and started down this surgery road!

Update:

So things are moving progressively backwards again. I thought I was doing really well and even at my follow up appointment last week, I said everything was OK. I am developing pain in my upper right and left quadrants again. The thing that makes me nervous is the pain is definitely different this time. It is more intense, comes and goes, and takes my breath away. I am still exhausted if I have to do anything and feel like I have to hold my sides while doing it. My stomach has a constant burning sensation and pain radiates into my shoulder blades. I am still slowly losing weight and each day, I eat less and less. I am back to taking narcotics at night and I feel like I eat Tylenol like candy during the day. I worry if this is a new problem or the same problem from scar tissue. I worry if there will be anything that can be done to fix it or I will have to live like this for an extended period of time. I wouldn’t say that things are worse than they were a year ago, but they are rapidly moving in that direction. I may have jinxed all my healing progression.

(Here is me trying to stay positive this week!)

I have an appointment with Dr. Frech in 2 weeks. We will see what these next 2 weeks have in store and then what the game plan will be from here on. 

Feeding Tube Follow Up and Support Group

Holy cow...I can’t believe that it has been 4 weeks since I have had my feeding tube out! I have truly loved every minute of it and pray that I never ever have to have one again!!

I have my month check up with Dr. Rasmussen. I had lost the 8 pounds originally but have been able to bring that up to only 2 pounds of total weight lost. He is happy with that number and so am I. Things overall seem to be going very well. I can eat pretty well but still am having issues with reflux and the gastroparesis. However, I think this will be my life long battle. I don’t know if there is anything that can be done at this point to correct the problem.

I watched a documentary about juicing recently and have decided to start incorporating this into my diet. I don’t have any pain or discomfort when I drink my calories (Ensure). So I thought that juicing would be a good way for me to get more nutrients in (since I don't take my vitamins and supplements religiously). I have a really hard time eating raw vegetables or fruits with skin, so why not drink them in liquid form? I just need to make sure to add protein to the drinks so I don’t start losing any weight. My main motivation for wanting to do this is to see if I can increase my energy in any way. I am so physically exhausted by the time I get home from work. If I sit in one position for too long or lay down, I fall asleep. It’s bad. I have never been a person to even take naps so this is driving me crazy!! There are days when I can’t even make it up the 14 steps in our house. I usually have to stop midway and take a breather and then climb the rest. For those who know me, this amount of energy is not OK! So I have started juicing here and there. I am trying to at least do one juice a day right now and will gradually increase that.

I have also graduated to 2-month follow ups! I haven’t had this for 2 years so I am excited. This is a step in the right direction. Keeping all my fingers and toes crossed! I will see Dr. Rasmussen in June again.

I also had the chance to go to support group last night! I love going to this support group. I didn't always enjoy it because I felt like my situation was so different. It is very different but in the end its also the same. These people are amazing and to just listen to them is inspiring. I love the energy that they have and how they have the daily strength to keep going. It always gives me the motivation that I feel I sometimes lack. I also get to share things that work for me and create new ideas of things to try. Even if its just talking about protein!!

Here are some quotes that keep me going every day!! I know that someday I will look back on all of this and find peace in my experiences. One thing I have gained from all of this is knowledge. I have learned so much through all of this and if I can share my knowledge with just one person it will all have been worth it! 

Happy National Doctors Day!!

Today is National Doctors Day. In honor of this, I wanted to give an update of how things are going as well as a shout out to my Doctors.

Things are going just OK. Not as well as I would like them to be going but it is what it is. I have had the feeding tube out for 2 weeks and have lost 8 pounds. I however have not passed out once since the feeding tube was taken out, so that’s a bonus! I am also having a harder time eating again. My stomach feels like it is shrinking and I am eating less and less. I try to eat at least once an hour so I can get most of my calories in, but this is hard since I feel full all the time. Everything just sits in my stomach and I am so nauseated all day long. I have grown such a hatred for food! The eating aspect of all of this is unfortunately moving backwards, not forwards. I feel weaker and weaker each day and am so exhausted. If I sit somewhere in the same position for too long, I fall asleep. All of my vitamin numbers look OK so I don’t know where this level of exhaustion is coming from. The Linzess that Dr. Frech has me on seems to be doing the job but it is not helping the pain in my colon on my left side. The pain in my right side seems to be creeping back but seems different this time and is centered more in my back and radiates into in between my shoulder blades. I think the only positive thing that has happened in the last 2 weeks is the tube is gone and I haven’t passed out! I see Dr. Rasmussen in 2 more weeks and Dr. Frech in May. If things don’t start taking a turn, we may have to change the game plan.

Since it is National Doctors Day, I had to give a shout out to both of my amazing Doctors! Wow. Where do I begin and how do I explain it in words? I have never met two Doctors that show their patients as much compassion as mine have given to me (and I have seen a Dr. or two in my day). Dr. Rasmussen and Dr. Frech are 2 of the most kind and caring individuals I have had the pleasure of coming into contact with. To them, I am not a number. I am a human being with a real complicated problem. I can’t even begin to count how many times I have had a breakdown in front of these guys and they sit and so patiently listen to me and offer whatever comfort they can. So many times, we forget the simple power that can be found in human touch. Whether that is a tissue box, a shoulder to lean on, or a simple hug they willingly offer it. I am sure that I would be dead at this point if it weren't for the 2 of them. Not only did both of them take on my rare extreme case, but both of them believed that I was truly sick. They listen to me and are also honest with me, which is rare to find in a Doctor. I owe both of them so much and don’t even know how I can begin to repay them! So here is to the best 2 Doctors that I think exist in the state of Utah, Dr. Richard Rasmussen and Dr. Edward Frech!

So for now, I have stopped trying to find or see a reason to why this has happened or why I have had to suffer through this. I just have to believe that there is a reason and hopefully find comfort in that. I continue to lean on those that lend their strength to me because mine is running low. I just have to remember that each day is a new day. 

Feeding Tube Decision Day...Dr. Rasmusssen

I had my 2 week follow up with Dr. Rasmussen today. My weight was down 3 pounds. He asks how things are going and I tell him. Probably not the whole truth but this tube has got to come out. It has been 12 weeks of Hell and I don't want to participate in this game anymore. He asks if I think I can maintain my weight or if the tube needs to be in longer. I tell him that I want the tube out and he has to give me a shot at this. So...he agrees to take out the tube!! Yippee!

That was quite the experience. It was just as painful taking it out as putting it in. I felt it slither all the way from my throat to my intestines. I gagged more with it coming out then I did when it was put in. My intestines squirmed and made all sorts of lovely noises. I forgot they made noise! That tube was definitely nasty! Nothing like funky colored slime.

Dr. Rasmussen wants to see me again in a month to see how things are progressing. If I can't maintain a weight then I am sure I will be in trouble again! For now I just need to focus on eating and not losing much weight before then. Oh happy day!!

Dr. Frech 3 Month Follow-Up

I had my 3 month follow up with Dr. Frech this past week. I haven't seen him since December and a lot has happened since then. I was in the ER with peri-portal edema. I met with Dr. Smith in SLC for a second opinion. I have had a ton of blood work and a liver ultrasound. I had a feeding tube placed. I gained 20 pounds and finally had surgery.

Once I catch him up to speed on everything that has happened we go over each issue one by one. He was relieved to know that Dr. Rasmussen found a few issues during surgery that he was able to fix things and I am mostly pain free at the moment. He says he was very concerned at how things were going last time I saw him.

We go over all my labs and agrees to the Vitamin D. He also wants me to go off my iron supplement because my numbers were a little high and he thinks that the iron may be contributing to my constipation issue. He also wants me to go back on the Linzess and stop taking the Senokot and MiraLax. He also renews my pain medication that I take at night.

We go over the more pressing issue of me passing out in the mornings. He thinks it may be related to the WPW syndrome and not a nutritional issue. My blood sugar has been normal each time. He wants me to take my BP and heart rate the next time I have an episode to see what it is. He thinks it may be a good idea to go and see my Cardiologist. We'll see.

He wants to see me in 6 weeks. He also wants me to have the vitamin labs repeated every 2 months until things become a little more stable. He thinks that the feeding tube should be taken out to see if I can maintain my weight.

One Month Post-Op Surgery Round #5...Dr. Rasmussen

I have my one month follow up with Dr. Rasmussen. Things seem to be going well so far. I seem to finally be at a stable weight. I am having a few issues right now that are a little worrisome.

1. I have absolutely no energy. I fall asleep if I sit still for more than 15 minutes. I have to keep myself moving constantly to avoid this. I have never been a nap person before and I feel like I need a nap every day to survive
2. I am having what I like to call pass-out episodes. It is happening more frequently and always in the morning. I had these start happening when I had the original surgery and it was because of low potassium. Dr. Rasmussen had my potassium checked a week ago and it was normal.
3. I have this pain that stretches across my whole upper abdomen. It feels more like a tearing/stretching sensation, not necessarily “bad” pain. I can’t lay completely flat because of this sensation. This also has made sleeping interesting.

Dr. Rasmussen has a few solutions/options to these problems. They are as follows:

1. We are going to repeat all the bariatric post-op labs that were done 6 months ago. I should be on a yearly schedule of these labs but haven’t quite hit that point. I will have these done later this week.
2. Passing out could be related to a number of things. Since it happens first thing in the morning, Dr. Rasmussen thinks it may be related to my blood sugar. He wants me to test my blood sugar when I have another one of these episodes. He also said that hypoglycemia may happen after this type of surgery. He said it could also be related to low protein intake. I should be at 60g of daily protein intake. However, on a good day, I can get anywhere from 20-30g of protein in. He wants me to swap more of my veggies and fruits for more protein rich foods and try and hit this target.
3. Dr. Rasmussen thinks the pain/sensations of tearing are related to having the surgery. Pain like this normally resolves about a month after surgery and I am right at that point. So we are going to just watch it for a few more weeks to make sure that it goes away.

Now, about this lovely feeding tube... The feeding tube has been in for 9 weeks now.9 whole weeks. Which in the grand scheme of things, seems like nothing! But, it is the 4^th one and I am tired of it and tired of the routine of having it. However, both of us feel it may be premature in pulling it. I am maintaining my weight but that’s with 1200 calories of tube feed. He is worried about what will happen when we rapidly take away the 1200 calories. So we are going to decrease the tube feeds to only 800 calories. What worries me is the passing out issue. If I am getting all this nutrition throughout the night, and still feel awful in the mornings, I am scared to see what will happen if that is taken away prematurely. I don’t want the tube anymore but I also don’t want another one placed in a couple of months. So for now, I will suck it up for a few more weeks and deal with it.

Game plan for now: I will see him again in 2 ½ weeks and we will see where things are at. If things look OK and are progressing in a more positive direction, he will pull it. If not, he wants to leave it in for 2 more weeks after that. 

3 Weeks Post-Op

I have started having dizzy/fainting spells. I can't stand for too long without getting crazy dizzy and feeling the need to faint. My heart races and I feel like it is going to jump out of my chest!

I called Dr. Rasmussen's office and we are going to check my potassium levels and glucose levels (I had this same thing happen when my potassium levels were low last year). I am also so weak and have absolutely no energy. I feel the need to sleep all day long! I am also having some funny pains in my side again.

**I got the results back from the blood draw and everything looks normal with the potassium and glucose. He wants me to drink some Gatorade to get my electrolytes up to see if that helps. I will see him in another week. I am just having a hard time understanding why I feel so weak and tired and I am getting massive amounts of nutrition from what I am eating and from the tube feeds!

I just want to feel at least semi-good for a day and not have to mentally and physically push myself to make it through a day!!