Surgery...Round 2!

I meet with Dr. Rasmussen one more time before the scheduled surgery. We go over any final questions and what the final game plan will be. I trust him to do what’s best for me, and that’s the plan we are sticking with. He also wants me to see a Cardiologist before the surgery to make sure that the palpitations I am having are just nerves. I also meet with Dr. Frech the week before surgery and he signs off on me having the surgery again. I also have another pre-screen appointment at the hospital the day before surgery and get all my lab work done. So now I am signed off for surgery by Dr. Frech, Dr. Rasmussen, the Cardiologist, and the hospital.

I am to check into the hospital at 5:30 in the morning again. It’s a super snowy morning and its quiet that time of day. Everything seems so surreal and I really can’t believe that this is happening again. I arrive at the hospital and the usual things begin to happen. More labs done, vitals taken, and I get changed into a gown. I wait for the nurse to come in and begin the charade of finding a vein and doing the final prep before the OR staff comes in. Luckily for me, the nurse gets a vein on the first try. We go over all history information and then all that’s left to do is wait for Dr. Rasmussen and the Anesthesiologist to come in. A short while later, the OR staff begins to trickle into my room. The OR nurse comes in and introduces himself and hangs out until all the other Doctors come in. Next is the Anesthesiologist, then Dr. Rasmussen. All final questions are answered and the plan is gone over again. Dr. Rasmussen will take out the feeding tube and then is anticipating the surgery to take 4-5 hours. Dr. Rasmussen leaves and so does the Anesthesiologist. Now it’s time for the versed and to be wheeled into the OR. I am only slightly freaking out at this point. I mention to the nurse that I would only like a little versed because the last time I had surgery I felt like I was given too much. He laughs and agrees to only give me a little. This time I actually remember saying goodbye to my parents and being wheeled down the hall. I get my blue hat and into the OR we go. I am wheeled into the OR room and am moved onto the operating table and then given the rest of the versed. I remember looking all around the room and then the oxygen mask goes on my face and the world goes black.

I remember this time waking up in the recovery section of the OR known as PACU. I was in so much pain this time, something I don’t remember from last time. Once my pain is semi under control I am wheeled to my room upstairs. I am in a big room this time and my parents are there. The surgery only took 2 hours which to me seems like a good sign. I am informed that the surgery went well and they were able to do a lateral (side by side) connection from the stomach pouch to the intestine. They were able to do this without taking any more stomach. The feeding tube is gone. I have another stomach drain as well.

I spend the next few days in constant pain. I had a lot more issues with pain this time around. I do pass my leak test and am progressed to a liquid diet. All of my post-op labs are done and a lot of the numbers come back bad. My calcium, vitamin D, and iron counts are all low, just to name a few. We spend the next few days trying to stabilize some of these values. I am given iron infusions for 2 days. A few other highlights of this hospital stay included an allergic reaction to pain medicine which caused some pretty entertaining hallucinations and an allergic reaction to the glue and steri-strips which caused a massive rash which blistered over. I was in the hospital for 6 days this time around. Over the weekend, I saw the on-call surgeon who wouldn’t let me leave until Dr. Rasmussen came back on Monday morning.

Dr. Rasmussen comes in Monday morning and looks at my belly and tears off all the steri-strips due to the allergic reaction. This rash/hives/blisters bit looks nasty. He also decides to take out the drain. I am discharged later that afternoon and am to see him in a week for a follow up. Happy Day!

I really have the best family and friends. They kept me going this time around. I had several melt-downs in the hospital and being on so much pain medication probably didn't help the situation. I always heard the statement that in your time of need you find out who your true friends are but learned what that statement truly meant. All of the hospital visits and phone calls/texts can mean the world to you when you are sick!  It sucked to go through this once but to go through it twice was awful.

IV Iron Infusion

Swollen belly when rash first started

Belly with drain coming out of stomach pouch

Rash when it first started

Rash after steri-strips were removed

Rash a few days after home from hospital

My entertainment and happiness for a few days!!

Surgery Decisions...Round 2

I go in to see Dr. Rasmussen to follow up with the feeding tube and to go over the results from the Barium Swallow.

Dr. Rasmussen is now sure that the surgery will need to be re-done based off the results of the barium swallow and the pictures that were taken. He says that for as many times as the surgical connection has been dilated, it should somewhat still be open. I agree. I feel like all the dilations have been a waste of time especially since now the connection is as narrow/closed off as it was from the very first dilation. The only thing that Dr. Rasmussen is unsure of is how exactly and what exactly he is going to do in the surgery. The ideal plan is to:

• ·         Hopefully do it laparoscopically (not open)
• ·         Repair the hiatal hernia (if it’s small enough, he will leave it alone. May cause more harm repairing it then good)
• ·         Not take any more stomach
• ·         Repair the connection. This is the big “unsure” part. He will try to do a lateral (side by side) connection, but also says he will do what my anatomy will allow him to do.

The next few steps involve going through the same process as the initial surgery with a few more Dr.’s visits, pre-op hospital appointments, and to try and not have a major panic attack and back out.

The bright side of this appointment is that I get to bump my feeding tube to only feed for 12 hours instead of 24 hours. Yipee!

I am not excited for the surgery this time around. I now know too much of what is going to happen and the process and the pain and all the complications that happened last time. Dr. Rasmussen also informs me that this time the surgery will be more complicated and has more risks. I will also have to be in the hospital longer. I am absolutely TERRIFIED!! I have started developing palpitations in public settings and at work. Only when I am home do they go away and my heart relaxes a little. However, even with all these horrible “what if’s” constantly running through my mind, the only thing that keeps me going is the fact that I trust Dr. Rasmussen with my life and know that he will do what is best for me.

Two weeks and counting. 

Barium Swallow and Feeding Tube

I have to fast for this procedure. I check into Radiology in the afternoon and am taken back to the procedure room. We start the usual stuff. I get changed into a gown and the nurse explains what they are going to do. The Dr. comes in that is going to do all the testing and place the tube. I take my position near the x-ray machine and start drinking all their lovely concoctions of barium. The test is completed and it’s time for the feeding tube to be placed.

I lay on my back underneath an x-ray machine and the fun begins. The first thing that happens is they inject a lidocaine jelly into my nose and have me snort it in. This will numb the cavity and throat. He begins sliding it through and I only gag 4 times as it goes in. It takes a good 10-12 minutes before it is all the way in place. The tube gets taped to my nose and cheek. He then brings me in the room to explain what he can see is going on from the x-rays.

The first is I have either another hiatal hernia or the one that was fixed in the initial surgery has come undone. Second, I now have a lovely case of reflux. And last, the surgical anastomosis (surgical connection) appears to be pinched off and is measuring at 1 cm (10 mm). This measurement is the same as when we first started doing the dilation procedures. 

So to me and the Radiologist, some form of the surgery needs to be re-done. How much of the surgery, neither of us know.

Machine that runs the feeding tube

Feeding tube bags that hold the "food"

Staying positive. Evening of feeding tube placement.

More Appointments

My next appointment is with Dr. Rasmussen. We go over the latest and greatest which included the ER visit and partial blockage and the 4^th dilation. He also decides at this appointment that the feeding tube has become necessary and doesn't want to wait any longer to have it done. He is also leaning more towards the idea that some part of the surgery will need to be re-done but will not consider re-doing the surgery until at least 6 months post-op and until I can stabilize and maintain my weight. How much of the surgery that needs to be re-done he is not sure of and decides to order another test. Another barium swallow is ordered right before the feeding tube will be placed. I am supposed to follow up with him a week after the feeding tube is placed.

I also see Dr. Frech before the feeding tube is placed to follow up with the last dilation. He 100% agrees with placing the feeding tube. When he goes back to look at all my numbers, it is shocking to hear how much I have really lost. He is also super leery about re-doing the surgery. He thinks it will be beneficial to leave the tube in place for 6-8 weeks and then pull it out and do a steroid injection into the surgical anastomosis. This can prevent inflammation and allow that area to heal better. He also suggests doing a side by side re-connection in the surgery. This involves cutting the old connection loose and bringing the intestine side by side and cutting it open 3-4 cm and then connecting that to the stomach. He wants to see me again in 6 weeks or before that if Dr. Rasmussen decides to do surgery.

At this point, I am confused at whose plan I want to go along with. 

Dr. Rasmussen 16 Week Follow-Up and Current Counts

I meet with Dr. Rasmussen and we go over everything that has happened in the 3 weeks since I have seen him last and he is so quiet. He has several different ideas of what could be going on and several different approaches we can take. He seems a little more hopeful (but still very concerned) than Dr. Frech. 

The first is that my pouch (2 thumb sized stomach) has stopped functioning. The second is that I can take acid proton pump inhibitors (which have proven effective for roux-en-y operation patients). The third is to mix water with my food to move it through the pouch faster (this is a big no-no for post-op gastric patients). He also says mechanically that everything appears to be fine—which makes him think the surgery needs to be re-done. 

He can remove another thumb size of my pouch, leaving me with a pouch of just 1 thumb size. I tell him to take out the whole thing; I am so tired of this. I explain my concern that I feel like the surgery fixed the bile-reflux gastritis but in turn has created a whole new set of problems, to which he agrees. He also doesn't want to wait 2 weeks to decide about doing a feeding tube, he will decide in a week. So for one week, I am to take an acid medication and try drinking water when I eat and to eat as much as I can tolerate to avoid the feeding tube. I see him in a week to make some decisions.

Current Counts since Surgery: (4 months)

CT scans: 2

X-rays: 6

Labs drawn: 8

Needle sticks: 43

Hospitalizations: 3

ER Visits: 3

IV therapy visits: 7

EGD/Scope with dilation: 4

Dr.’s office visits: 12

X-ray, Road Trip, and Scope #4

The next morning I had to go get the x-ray done for the urologist. I went in the morning and had that done and then started the adventure of trying to get a hold of Dr. Frech to have something done. My family had a road trip planned for several months and we were scheduled to leave the next morning, so I was desperate to have something done to feel some relief. Unfortunately, I learned throughout the day that the phones at Dr. Frech’s office were down. So I emailed his medical assistant to try and get something done and got no response for the rest of the day. I took out my own IV.

The next morning we left for our trip. I spent the entire vacation only drinking ½ a protein shake a day and about 4-8 oz. of water. It was miserable. By the time we had returned from our vacation, I had not eaten for an entire week.

While on vacation, the phones were fixed and Dr. Frech’s assistant was able to contact me. Dr. Frech suggested another scope but was reluctant to do it, because it was a little too soon from my last one. Because of the ER visit and my symptoms, we decided that we should do it again.

I went to IMC the next morning after getting back from vacation. I went through the usual and was taken to the procedure room and met with Dr. Frech. I told him what had happened in the ER and what the Dr. had assumed was happening. He didn't think that it was possible for the connection to shrink enough in a week and half’s time to cause a blockage. We discussed several options but I told him something needed to be done to break this cycle of stretch-feel good-feel bad-stop eating-pass out-ER visit-another stretch. He decides to go ahead and check everything and I am knocked out again.

I wake up in the recovery room. He says that the connection has shrunk to 16mm and he was able to stretch it to 18mm. From now on, he doesn't want to stretch it any bigger than 18mm because he is thinking that stretching it to 20mm was too harsh on my body. He also can’t explain mechanically why I am still having so many issues eating. For the first time since I have seen Dr. Frech he seems hopeless, lost, and frustrated. This worries me. He has always been on my side and has fought very hard for me. He is also not very happy about how much weight I have lost. Since I have not been able to maintain a weight and continually keep losing it, he will decide in 2 weeks at my follow-up appointment if they will put a feeding tube in.  Since my surgery 4 months ago, I have lost 67lbs. I am scheduled to see Dr. Rasmussen the next day. Hopefully, he has an idea of what to do next. 

Another ER Visit

Who knew that eating dinner would be such a bad idea?  I ate and from that point on felt so gross. I spent the next several hours trying to throw up what I ate to see if that would make me feel better. I laid down on my left side (this usually helps) and then tried walking it off. Nothing was working and I was getting worse. I felt as if everything was stuck and there was no movement occurring. I could not burp or move air through and I started to get worried. We decided that maybe the ER was the answer again tonight.

It was a Monday night and little did I know that this is apparently the busiest night in the ER. We got there and the ER was packed. I got checked in and waited an hour in the lobby. They pulled me out of the lobby and into triage and started an IV and did some lab work and then sent me back into the ER lobby. I waited another 15 minutes before I was taken back to a room. When I got into a room the nurse came in and then the Dr. came in. We discussed my history and the surgery I had. He pumped me full of Zofran and Morphine while he decided what he wanted to do. He suspected I had a partial/full gastric outlet obstruction. Because Dr. Frech has privileges at IMC he wanted to send me up there and have Dr. Frech do the procedure. He called IMC and Dr. Frech was not on call but one of his partners was. He told the ER Dr. that they could transfer me to IMC and admit me overnight and someone else would do the procedure in the morning.  I told the ER Dr. that if Dr. Frech wasn't going to do the procedure I didn't want to travel all the way up there to explain to another Dr. my history when we could just do something in Provo tonight. He agreed and called the on-call Gastro Dr. at UVRMC. The response was pretty much the same; they could admit me overnight and do the procedure in the morning. I was so fed up at this point. The ER Dr. said if I really didn't want someone else doing the procedure I could go home tonight and then call Dr. Frech in the morning and see if they could get me in in the morning. At this point, this was the only option that allowed me to not stay overnight, so naturally this is the one I took.  The Dr. gave me more medicine and fluids to get me through the night and left the IV in my arm so I wouldn't have to do another one in the morning. I was instructed very specifically to make sure that I called Dr. Frech in the morning and take care of this.

Little did I know that things were not going to work out how the ER Dr. had this planned.

Scope #3

Once again, I go to IMC and get checked in for my procedure. I am becoming a true pro at having this done (which is never a good sign). Once again, I am taken back to the procedure room and Dr. Frech comes into to talk to me. He explains everything and then I am given propofol. I last about 25 seconds this time and the world goes black.

I wake up in the recovery room and Dr. Frech is already there. He explains that this time, the connection only shrunk to 17mm and he was able to stretch it to 20mm. This is as big as they go and is very hopeful that he won’t need to dilate again. He has me continue the Carafate and informs me to contact his office if I need anything before I see him 2 months. I am sent on my way.

I spend the next several days being miserable. I overall don’t feel good. I am exhausted, have no energy, and have excruciating pain every time I try to eat or drink. I spend the next couple of days in bed and one night I pass out. I am a little alarmed but try not to worry. I just get back into bed and fall asleep. The next morning, I am so dizzy and lightheaded and feel so weak, I have to sit on the floor to get ready for work. By now, I am a little concerned so I email Dr. Frech to see what I should do. His assistant calls me later that day to inform me that I need to go the ER because my symptoms are not typical with the procedure I had done. I decide not to go because I am tired of the ER and the hospital and being poked and I don’t feel like I am near deaths door step yet.

That afternoon, I have a follow up appointment with the urologist to check on the status of my kidney stones. I go and see him and he wants an x-ray with contrast done the next morning to see if there is anything left in the ureter. I go on the rest of the day feeling weak and crummy. I decide that maybe I should eat something that night and hopefully I will feel a bit better. This turns out to be a very bad idea. 

Three Month Post-Op Lab Work and Follow Up

So after I have the second scope done, I go through the motions of trying to recover. I feel pretty good after this stretch and feel like I can eat something and not want to die. I attend another support group meeting in the meantime. I am also scheduled to go in for 3 month post-op lab work as well. I have this done and then I am scheduled to see Dr. Rasmussen the following week.

I see Dr. Rasmussen and we discuss several different issues. The first is that my incisions are still numb. He says that is not normal for 12 weeks post-op but neither one of us are too worried about it. One of incisions is also healing funny so he prescribes a silicone ointment to rub on the incision, once again not too worried about this. The lab work came back normal which is a good sign. I don’t have any nutritional deficiencies at this point and just need to continue taking my multivitamin and calcium. I am still very dizzy and lightheaded upon standing but this may be due to the fact that I still am not eating as much as I should be. We go over how much I need to be eating and how much physical activity I need in a week to regain my strength. Overall, things are looking up and he wants to see me again in 3 weeks.

This same day I go for my last scheduled IV therapy appointment and am relieved that I will not need these services again, hopefully.

In the next couple of weeks, my stomach starts giving me problems again. I feel like I can’t eat much and having a lot of pain so I call Dr. Frech’s office and we schedule a third scope with dilation.

Scope #2

A week after my IV therapy appointment, I have to go to the hospital for the second dilation of my stomach. I check into IMC and once again go through all the motions of being checked in and prepped for the procedure. I am taken back to the procedure room where Dr. Frech is waiting.

He asks me what in the world happened and I inform him of all of the previous week’s adventures. The stones, the low potassium, and the hospital stay. He seems very concerned and we go over the procedure again. He informs me of all the risks and then the standard happens, I am given propofol and this time I can withstand the drugs for about 20 seconds and then the world goes black.

I wake up in the recovery room and wait for Dr. Frech to come in. He comes in a little bit later and gives me the results. The connection has shrunk from 16.5mm to 14mm. He was able to stretch the connection from 14mm to 18mm. He is optimistic that this will be the last stretch unless I feel the need to have it done again. He also gives me a prescription for Carafate. This should help keep the inflammation down and allow the stretching they do to heal. He wants to see me in 2-3 months. 

ER Visit #2

So two days after I see Dr. Frech and Dr. Rasmussen I end up in the ER with excruciating pain in my back. I am checked in and taken back to a room. Lab work is done and a CT with contrast is scheduled. I get all the tests done and the Dr. comes in and gives me the results. I have some sort of blockage in my ureter but they are not sure if it is a blockage or a kidney stone. I also have low potassium. This in turn means I don’t get to go home. They will keep me over night and give me an infusion of potassium and I will meet with the urologist in the morning.  It’s a rough night, but they keep me pumped full of narcotics to the point I am in la-la land.

In the morning, I am taken down for a KUB x-ray. A little while after, the urologist comes in and informs that indeed I have some kidney stones. He wants to do surgery the following morning but also wants to wait and see if I can pass them in the day (which I totally agree with). He also lets me know that he won’t have anything to do with my low potassium levels and that someone else needs to handle that when I go home. I call Dr. Rasmussen’s office and let his nurse know I am in the hospital and about the low potassium.

Later that day, Dr. Rasmussen comes by to check on me (which was very nice of him to do so). He asks me when I will catch a break. I have to laugh because to this point, this situation has become almost comical. However, we are hopeful that the stones are just a consequence of being dehydrated and having weekly IV therapy appointments. He wants to see me after I have the 2^nd stretch done.

The day continues onward at the hospital, and I pass 4 stones. I am feeling pretty good and ask the nurse if I can go home. She clears this with the urologist and the surgery is cancelled and I go home. I am supposed to follow up with Dr. Rasmussen for the low potassium.

I leave the hospital on Friday night and have my IV therapy appointment scheduled on Tuesday. At this appointment, instead of just having fluids, I get a 5 ½ hour infusion of potassium. I also pass 2 more kidney stones at home, for a grand total of 6 stones.

Scope #1

I check into IMC and go through the normal routine that is required. I am taken back into the procedure room and Dr. Frech explains what he will do and all the possible risks of doing this procedure. I am given propofol and knocked out.

I wake up in the recovery room. Dr. Frech comes in and explains what he has found. Where Dr. Rasmussen cut out my stomach and surgically reconnected it to the small intestine had basically closed off. Dr. Frech said it was so tight that he could not even get the scope camera through, so by his measurements the opening was less than 9.8mm. Which is half of what it should be, Dr. Rasmussen left this opening at 20mm at the surgery. Dr. Frech was able to dilate the connection to a 16.5mm. He thinks he may have to do it a few more times before it will stay open. I am supposed to contact him if I feel the need to do it again.

I see Dr. Rasmussen the following week. I give him the rundown of what Dr. Frech found in the scope procedure. I also inform him that I am still not really eating and am still having a lot of pain in my abdomen. He thinks that maybe the connection has closed off again and wants the scope repeated and the dilation done if necessary. He is also thinking that I may need to have a feeding tube if I am not able to eat. He really wants me to keep pushing the protein shakes so I get some sort of nutrition in.

I see Dr. Frech on the same day in the afternoon. I relay the concerns of Dr. Rasmussen to him and we decide the best thing to do is repeat the scope but he cannot safely do another one for at least 2 weeks. He also thinks that doing the feeding tube is jumping the gun. He wants to wait on that and see what happens with the scope. We schedule the scope for 2 weeks out.

Follow Up’s and IV Therapy

My next scheduled appointment is to see Dr. Frech. I see him a week after being discharged from the hospital. This is the first time I see him since I had surgery. He is excited to hear that some of my symptoms have been resolved. He goes over all the tests that were done in the ER and agrees with what they did. He also thinks that the pain I am having in my stomach is due to some form of closure/restriction that may be occurring at the surgical site (even though the barium swallow came back normal). He informs me that it is a simple fix, it requires an EGD. He can go in and dilate the closure to open it more which will allow food to go down easier. However, this procedure can’t be done for 6-8 weeks after the initial surgery. If it is done too soon, there is a risk of perforation, bleeding, and another surgery. We change some medications, mostly to liquid form. We will wait 6 weeks to see if anything improves or the procedure needs to be done. I am supposed to contact the office if I have any more problems before then.

The next follow up appointment I have is with Dr. Rasmussen. Unfortunately, he is called out for an emergency surgery and I get to see someone who doesn't know me or my case. I speak with him for only a short time. After staying in the hospital and explaining my case to so many different Dr.’s, I am not really in the mood to do it again. He thinks that my stomach still hurts because there isn't a lot of movement to push the food out. He gives me a prescription for Reglan (which has nasty side effects) and tells me to take it for 2 weeks.  I leave the office kind of annoyed that I wasn't able to ask Dr. Rasmussen any of my questions, but what can you do.

A week later, I am feeling extremely dehydrated and not any better. I call Dr. Rasmussen’s nurse and tell her my concerns. They decide that a round of IV fluids would be beneficial. I have this done; it helps for a day or two. I see Dr. Rasmussen two weeks later for another follow up. I am still having pain in my stomach and now the suspicion is spasms. He puts me on another medication to try. He says I just need to give myself more time to heal. I am still not eating or drinking much at this point.

A few days after my appointment, I start feeling extremely dehydrated again. I call Dr. Rasmussen’s nurse and once again they schedule an IV Therapy appointment with lab work. She also tells me that we just need to give it time. At this point, I am not OK with this answer. It has been 7 weeks since my surgery and I feel just as crappy as I did before. I am starting to regret having this surgery if this is the way I am going to feel. I decide to contact Dr. Frech’s office and see what he thinks I should do. I am informed that it is probably a good idea to do the scope and I agree.

The next day, I attend my first support group meeting. Dr. Rasmussen and his nurse are present at the meeting and I have a chance to talk to them. Dr. Rasmussen decides that since the IV Therapy helps so much, we will continue to do that for a month and then re-evaluate. I tell him about the scope that is scheduled for the following week, and he seems a little nervous about it. He wants a report at the next visit. I apologize for being a crummy patient and he tells me that he does care about my case; he is just in unchartered territory and is not sure what to do next.  The next scheduled appointment is for the scope. 

Sitting in the chair with my IV

ER and Hospital Stay #1

We go the ER on a Friday night. Bad idea. Everyone in the valley seems to be there. I get checked in and wait for what seems like an eternity. My Dad decides to call Dr. Rasmussen’s office and speak with the answering service. They inform him that they will contact the Dr. and then call back. They never call back so my Dad calls again. They then tell him that the Dr. is aware of the situation and is speaking the ER Dr. A few minutes later, the triage nurse comes to draw my blood in the lobby of the ER. After this is done, I am finally taken back to a room and allowed to lie down. The ER Dr. comes into the room right away and assesses the situation. I am given pain and nausea medication first and then taken down for a KUB x-ray. Once all the tests are done, the Dr. comes in to inform me that most of the tests are normal. However, Dr. Watts (assistant surgeon) wants to admit me for dehydration and monitor my condition. They will decide in the morning if I need a feeding tube.

I spend the first night in the hospital. This involves getting labs drawn at 3:00 in the morning again. In the morning, Dr. Hill comes in. He is the general surgeon on call for the weekend. He informs me Dr. Rasmussen is out of town and between him and his partners they will be handling my case while I am in the hospital. Over the next 2 days, I see Dr. Rasmussen’s 5 different partners. This also involves explaining my case to 5 different people. Dr. Hill decides first to order a CT scan of my abdomen. He wants to check the area of where the hernia surgery occurred and make sure there is nothing wrong. The CT scan is done and of course comes back normal. In the afternoon Dr. Cook and his partner come in and I explain my case again to them. They decide the best thing to do is get me hydrated and to the point I can eat something again. I get a couple different drips of medication and of course pain meds and Zofran. One of the drips is called Procalamine. This works wonders for me. It has amino acids as proteins, essential minerals, and glycerin for energy. It takes about 10 hours to infuse into the body and apparently it is not administered frequently because none of the nurses are sure how to give it to me. I get 2 giant bottles of this medication over the next 2 days. On the third day in the hospital, Dr. Garry comes into my room. He says if I do well today, I can go home tomorrow. I don’t really like that idea and strike a deal with him. He says if I can eat breakfast and keep it down, he will let me go home. I do just that. Yogurt it is. I am still having pain but I want out of the hospital. I get discharged that afternoon. 

Healing at Home

I have a follow up appointment with Dr. Rasmussen’s Nurse Practitioner at 1 week to have the drain removed from my stomach. Also at this this appointment, I learn I have oral thrush from all the antibiotics I received in surgery as well as cold sores all in my nose due to the stress my body is under. I am pretty miserable but am still trying my best to drink what I am required. I am also given samples of a multi-vitamin the office gives to bariatric patients that are not hard on the stomach. I am scheduled to see the surgeon in another week.

The next follow up at the surgeon’s office goes well. This appointment is 2 weeks post-op. The incisions are healing well and I am only in a slight amount of pain from the actual surgery. The thrush is still not gone but the cold sores are. I am given a prescription for more mouth rinse for the oral thrush. I have started to develop this pain in my stomach that only occurs any time I eat or drink. This has caused me to pretty much stop eating and drinking which in turn makes me feel weak all of the time. I share this with Dr. Rasmussen and we decide to just give some more time to heal. It may also be that the thrush has spread to my stomach and that is causing the pain.

Three days later, I wake up in excruciating pain. I feel dizzy and lightheaded and am dry heaving. I call Dr. Rasmussen’s office and talk with his nurse. He decides to order an esophogram. This is the barium swallow test that I had done the day after surgery. This will check to see if everything is still connected properly and there are no leaks. I have this test done at the hospital in the late afternoon. Once the test is done, I am sent home. I spend the next few hours being miserable and dry heaving. I cannot lift my head off the pillow without feeling the need to pass out. Dr. Rasmussen’s office staff calls at 5:00pm on a Friday evening and lets me know the results were normal. I ask her what I am supposed to do and she doesn't offer any remedies.

I wait a few more hours before I decide to move again. I get up out of bed and the first thing I do is pass out. The world goes black a few minutes again after I come too. At this point, I begin to freak out a little. I manage to find my phone and call for help. My Dad decides that he has seen enough and hauls me off to the Emergency Room.

Hospital Stay

The next few days are a blur. I don’t remember anything that happened the first day. One of the first things I do remember is the leak test. Only because they make me drink a barium chalky substance after they just cut me all apart and put me back together. Pretty gross and pretty painful. I find out an hour later when Dr. Rasmussen comes by that I passed the leak test and am no allowed to start drinking. I also have to start training my stomach to only have 3-4oz. of fluids in an hours’ time frame.

Family, friends, and co-workers come to visit but most of their visits are a blur. I have the best family and friends in the world. They fill my room with balloons, and flowers, and even presents. By the time I left the hospital, there was room for nothing else.

I am kept pretty doped up so I don’t remember a lot of what happened in the hospital. I get the catheter taken out on the second day, only to be re-cathed that night due to not putting anything out. That’s always a pleasant experience you can’t really forget. I get my blood drawn at 3:00 in the morning every single day I am there.  Vitals happen all through the night. I basically don’t sleep, unless I am on the drugs. I get moved to a full liquid diet 2 days in which includes carnation instant breakfast drinks and broths. I am weaned off of all the lovely meds. I am feeling pretty good and want so badly to go home. I am discharged on Saturday (4 day hospital stay). 

Gutless

I can’t believe today is finally here. I have waited for so long and have already been through so much, I just want to feel better and am hoping that this is the beginning to that. I start this whole process by fasting from 11:00pm the night before. This includes water, breath mints, and gum. I don’t sleep a wink the entire night.

I check into the hospital at 5:30am. I first have some more labs done. I go back into the Same Day Surgery department where all my vitals are taken. I am then led into a room and told to change into a gown and socks. Once I do all this, the nurse comes into the room and we begin the real fun. She starts this process off easy by going over my health history and asking me questions. I get compression socks hooked up to my legs, this prevents blood clots from forming until I can get up and walk. I then have to take some heartburn medication for my reflux; this stuff tastes pretty dang awful. Once all this is done, it is time to start the IV. She tries three times. Another nurse comes in and tries 3 times. Then the Anesthesiologist comes in and he takes the gold. He tries 7 before he gets a tiny vein in my hand on the eighth try. In the middle of all this pain and chaos at 6:00 in the morning, Dr. Rasmussen comes in and signs a couple papers in my chart, makes sure I haven’t changed my mind and answers some more questions from my nervous parents. After he leaves the room, the OR nurse comes in talks to me for a minute and then leaves. Then an OR tech comes in and puts a hat over my hair. All of this happens while I am still being poked. At this point I have been poked so many times that I am getting nauseous. The Anesthesiologist notices this and puts a patch behind my ear to help with the nausea. Once he gets the IV in (14 sticks in total) he instantly gives me versed. I don’t remember anything after this and I hate it. I hate not being in control of things I do or say. I don’t remember saying goodbye to my parents, being wheeled out of the room, or even going into the OR.

The surgery starts at 8:00am (I am a ½ hour delayed due to the IV issues) and lasts pretty close to 4 hours. My poor parents sit in a waiting room this entire time, waiting to hear good news. Dr. Rasmussen comes out and talks to them after the surgery is over. The surgery went very well. They were able to remove most of the stomach and create a new stomach pouch that is about the size of 2 thumbs (1 thumb bigger than anticipated, Yippee). The hiatal hernia was smaller than anticipated so they were able to just pull it back down and staple it. The new roux limb is now 40cm which is exactly how long Dr. Rasmussen wanted it. I am now what my family calls gutless. I will have a leak test done in the morning. He is anticipating my stay to be 3-4 days. 

Flowers and balloons filled my room!!

Pre-op Class and Hospital Pre-op Appointment

I go to the pre-op class offered by my Dr.’s office a couple of weeks before surgery. They have everyone there that is going to have gastric bypass surgery within the next couple of weeks attend this class. The pharmacist from the hospital is there, the nutritionist, and the Dr.’s nurse. They each take turns going over what will happen from the point we check into the hospital until we are discharged. We are then allowed to ask any questions that we might have pertaining to our individual situations and surgeries. Pretty informative class.

Two days before surgery, I have my pre-op appointment at the hospital. At this appointment I meet with a pre-screen nurse. She goes over what will happen as well. She then goes over the health history and asks any pertinent questions. They draw some tubes of blood. I ask any questions. Appointment over.

I am now ready for surgery. They call me the night before surgery. I am to check into the hospital at 5:30am. Here we go, ready or not, this is actually going to happen. 10 years of suffering and not knowing and in just a few days I should finally feel better, right? 

Nutritionist Meeting and New Food Diet

My first appointment before surgery includes meeting with a Nutritionist/Dietitian. I only have to attend one appointment whereas those who have the gastric bypass surgery for weight loss have several appointments. I will briefly go over the stages of how I am supposed to eat after the surgery based off of the information from this appointment.

One week before surgery: begin liquid high-protein diet. This includes drinking protein shakes. I opt for Slim Fast High Protein. I need to consume about 70 grams of protein and about 900 calories a day. No more solid food.

Stage 1: Post-op Day 1 & 2, this occurs while in the hospital. Once the barium swallow x-ray is completed and there are no leaks in the new surgical connection, you can progress to this stage. Only clear liquids. Non-carbonated. No calories. No sugar. No caffeine. Allowed to sip 2-3 oz. of water per hour.

Stage 2: Post-op day 3 (discharge diet). Clear liquids combined with full liquids. Clear liquids include no sugar or artificially sweetened liquids. Salty liquids are encouraged. Full liquids include protein-rich liquids. At this stage you are supposed to consume 48-64 oz. of liquid but are only allowed to sip 3-4 oz. per hour. This total amount should be split between clear and full so I should be consuming 24-32 oz. of clear liquids and 24-32 oz. of full liquids.

Stage 3: 2 weeks post-op. Increase clear liquids to 64+ oz. daily. Replace full liquids with protein-rich foods. These must be soft, moist, diced, ground, or pureed. Only a couple of tablespoons of food are tolerated at each meal. Eat 3-6 times a day. Examples of food at this stage are eggs, deli meat, fish, cottage cheese, yogurt, and refried beans. Also at this stage you are no longer allowed to drink with your meals. You must stop drinking ½ hour before you eat and then do not drink anything else until ½ hour after you stop eating. This is a new lifetime rule. This is because the liquid can move the food too quickly through the new pouch and your body will not be able to absorb the nutrients from the food you are eating. Too much liquid can also cause discomfort. You need to give the body the longest amount of time to absorb the nutrients because in a gastric bypass patient, the new intestinal route bypasses the duodenum and first part of the jejunum which is mainly responsible for absorbing most of the nutrients from the food that is eaten.

Stage 3: 4 weeks post-op. Continue advancing diet as tolerated. If you can eat high-protein foods and tolerate them, you can start adding well-cooked soft vegetables and fruit. You must always eat protein first before eating anything else.  At this stage, about 2 oz. (or less) of food is consumed, also new lifetime rule. At this stage, you aren't allowed to consume rice, bread, and pasta.

Stage 4: 6 weeks post-op and beyond. Advance diet as tolerated to healthy solid foods. Diet must consist of healthy, adequate protein, fruits, vegetables, and whole grains. 60 grams of protein a day must be consumed while only eating 2 oz. of food at each sitting. I am allowed to add grains and starches back in at this point as long as they are whole grain and I am not losing any more weight.

I leave this appointment a little overwhelmed with all the new information. It is not a matter of if I can do this, but can I make this commitment to change my life forever? I again begin to weigh in my mind what is worse, following this new food plan or being sick every day. 

Dr. Rasmussen, Dr. Frech, and a Decision

I go and meet with Dr. Rasmussen. I am glad that he remembers me! I take all the information that I possibly can for him to go over with me. I explain the situation, the diagnosis, and all the medication I have taken for this. I also tell him that Dr. Frech tells me that I need the Roux-en-Y surgery.

We then go over how he would proceed with the surgery. He then tells me he has never done this surgery on a patient with bile reflux so he would like to talk to his partners before proceeding.  I agree. The more opinions we can get on the best way to do this, the better! He is sure that the best of the bypasses will be the gastric bypass which is considered to be the gold standard. We go over all the complications that can happen after gastric bypass which are not limited to; infection, bowel obstruction, hernias at incision sites, hemorrhage, blood clots, leak in the surgical connection, ulcers, dumping syndrome, nutritional deficiencies, and of course death. Dr. Rasmussen tells me this is a drastic surgery and life altering. I will have to eat differently and take supplements for the rest of my life. He also informs me that we could possibly be changing in one set of problems for another. I explain to him that I don’t know what other options I have at this point and he seems to understand. I tell him I meet with Dr. Frech in a week and will have a decision made by then on how we will proceed. I have a week to wrap my head around all the ‘what if’ problems and really think about how different my life will be.

It has been a week and my appointment with Dr. Frech has finally arrived. I am very nervous and so very tired of testing and Dr. appointments and just overall sickness. I want so badly to feel semi-normal and this is what is driving my decision. Dr. Frech comes into the room with such a concerned look on his face. We decide that surgery is the last and only option. We go over a few details and he requests that Dr. Rasmussen take out most of my stomach. In typical gastric bypass patients, the stomach is left intact and still will produce digestive enzymes that aid in digestion. In my case, removing the stomach is the only way to stop the bile from re-fluxing back into the stomach and stopping the pain. If the stomach is left in place, the sphincter will still not function correctly and the bile will continue to back up into the stomach. Dr. Frech reassures me that everything will be OK and I can get through this. His words, at this point, are the only thing keeping me going and giving me some form of comfort. I trust Dr. Frech with my life and not a lot of Dr.s are afforded this privilege. I will see him 3-4 weeks after the surgery.

I go back to see Dr. Rasmussen and let him know that Dr. Frech and I feel that the surgery is the best option and we have decided to go ahead and do it. Dr. Rasmussen has also prepared for this appointment and presents to me 2 different surgery options. I will spare the long details of the 2 different ways and talk about the one that he thinks is best. He decides the hiatal hernia needs to be repaired. However, it doesn't appear to be too big so he is not terribly concerned with it. The next step will be to remove the stomach, how much of it he won’t know until he is actually in my abdomen doing the surgery. He is aiming to leave my stomach the size of a thumb. The next step is to reconnect the newly formed stomach pouch to the intestine and create what is called a limb. The trick to this part of this surgery will be to make sure the limb will be at least 40 cm long. Making the limb this long will hopefully prevent any bile from coming back up into the newly formed stomach. A three part surgery that he is anticipating will take 3-4 hours. This surgery will include a 3-4 day hospital stay, a catheter for 2 days, a barium swallow to check for leaks, and lots of drugs. He also decides that I will see a Nutritionist for a visit to make sure that I will know how to eat after surgery. I am also enrolled in a pre-op class that I will explain later. The medical/technical name of the surgery is called laparoscopic subtotal gastrectomy with roux-en-y gastrojejunostomy and hiatal hernia repair. Due to my work schedule and Dr. Rasmussen’s on-call schedule (plus an assistant surgeon) the surgery is scheduled for 6 weeks out. Holy cow, is this really going to happen?

Second Opinion

So I set up an appointment to see another Dr. at a clinic in Sandy.  I go to meet with him and was very disgusted with how he responded to my case. He first tells me that I have had every test under the sun done (no kidding, I wasn't sure of that but thanks for clearing that up for me). He then proceeds to tell me that having the surgery is a very bad idea. He says it’s too life altering and that I am too young to have such a drastic surgery. When I ask him what he thinks would be the next step, he then proceeds to tell me that I should try acupuncture for at least a year to year and a half. Acupuncture? Are you kidding me? What a waste of money, gas, and time! The first thought that comes to my mind is didn't I come to see a Dr. of modern medicine? If I wanted an opinion about how to cure myself without modern medicine, I would have paid someone for that opinion. I am not ragging on acupuncture in anyway, I believe it does help certain people with certain conditions, but I was not willing to try anything else “natural”. I had been too sick for too long and was ready to be fixed. He then goes on to tell me that he is sure my life has been hard for the past few years and that he is sorry but there is nothing else that can be done in his medical opinion. He offered no hope or resolutions.

I decide that at this point I am going to go see a surgeon and get his opinion before I see Dr. Frech again so that we can make a decision about how to proceed. When I begin to look for a surgeon, I think that looking for a general surgeon will get me where I need. I immediately think of Dr. Rasmussen. However, I also learn that since my surgery is considered gastric bypass I need to find a surgeon who does this type of surgery. My insurance company informs me that there are 2 in Utah County and I am immediately comforted to learn that one of these is in fact Dr. Rasmussen (he did my other 2 surgeries). 

Medications

So a diagnosis has been made. The next step involves trying all the medications that could possibly help control this condition and manage my symptoms so I can function like a normal person. For the next 2 months we try different combinations of medications at least hoping for some sort of relief. Dr. Frech is very optimistic that the medication will work and the surgery can be avoided.

These are the medications that we have/will try since meeting Dr  Welchol-used for bile salt diarrhea; helps relieve symptoms.

• ·         Zofran-used for nausea; helps relieve symptoms (take these like candy).
• ·         Tramadol-used for pain; some relief but not a lot.
• ·         Dexliant-used for heartburn; helps relieve symptoms (magic medicine in my opinion).
• ·         Align Probiotic-used to promote good bacteria in the stomach; no relief.
• ·         Hyoscyamine-used for spasms/cramping when IBS was suspected; no relief.
• ·         Sucralfate (Carafate) - used mainly for ulcers in the intestines. This medicine forms a coating/protective layer to the area to prevent more damage; no relief.
• ·         Ursodiol-used for treatment of gallstones but has been proven effective in relieving symptoms of bile reflux; no relief.
• ·         Cholestyramine Powder-used to help absorb the extra bile and move it through the digestive system-no relief. I have an allergic respiratory reaction to this medicine (which is usually unheard of, of course!)

We try a combination of all of these medicines for about 2 months. After the last one causing the allergic reaction, Dr. Frech informs me that there are no more medicines to try for this condition and he wants me to get a second opinion with another Gastroenterologist.

**I also want to note that before I started seeing Dr. Frech I also tried what some call the natural route of healing. I went to a Doctor who specialized in NAET which is an allergy elimination technique. When I first met with him, he said I was pretty much allergic to all foods. I saw him for about a year and spent a small fortune on having procedures done to eliminate the so called allergies. After many failed attempts, and no progress, he was the one that suggested that maybe it was time to find a Gastroenterologist because I had a much bigger problem that needed modern medicines help.

D-Day

EGD day. I am so incredibly nervous. As awful as it sounds, I want Dr. Frech to so badly find something wrong but have become very skeptical at this point. I check into the hospital in the late afternoon and have been fasting for 12 hours. At least for this test I don’t have to drink any nasty liquids. It is very quiet and I am Dr. Frech’s only patient for the day. The usual preparations happen. When I am ready, they wheel me into the procedure room and it is dark. I am hooked up to the monitors and oxygen is put on. I feel like my heart is going to beat right out of my chest.

Dr. Frech comes over and sits down next to me. I immediately apologize for my meltdown in his office and ask him to please not give up on me. He promises to not give up on me as long as I stick with him and don’t give up on him. He goes over the procedure and what he will do. We both seem nervous. He looks at me and says he hopes he finds something because he will be at a loss if nothing is found. I have very little reassurance from our conversation. 

Once again, I am in the process of being knocked out. This time, I watch the clock in the room to see how long I can stay awake. About 45 seconds and the last thing I remember is Dr. Frech standing next to me waiting for me to fall asleep.

I wake up in recovery and the first thing I ask my parents is how long I was gone. 25 minutes. I instantly know that he found something. A few minutes later, Dr. Frech comes in and confirms what I thought. He shows me the pictures of my stomach and then proceeds to tell me that I have one very angry stomach. My esophagus is normal but I have a hiatal hernia. I also have polyps in my stomach. He then proceeds to tell me that I have a condition that is called bile reflux gastropathy/gastritis. I have bile that is pooled in the bottom of my stomach, just sitting there, causing inflammation in my stomach.  He thinks that this could be related to having my gallbladder removed. When the liver releases bile, it is stored in the gallbladder. When the gallbladder is removed, the liver still releases bile and the bile in a normal person flows downward into the intestines. In my case, I produce too much bile and it flowed downward into the intestines but also flowed upwards and back into my stomach. This also caused a dysfunction of the pyloric sphincter which controls what is allowed back in and out of your stomach. Dr. Frech tells me that we have a couple options but are limited. The only way to truly correct the problem is to have surgery. This procedure is called a Roux-en-y or better known as gastric bypass. For now, we will try medication and hopefully this controls the symptoms enough so that the surgery would not be necessary. He puts me on a medication called Ursodiol.

Finally…vindication! A diagnosis has been made. Little did I know that there was not a lot of information out there on my condition, let alone what I could to fix it or if surgery would even work.

Emotional Wreck

When I see Dr. Frech 2 weeks later, I am an emotional wreck. I hate crying in front of people but at this point I don’t know what else to do or how else to hold it together. You try to stay strong but each test that comes back normal tears me down. Each day I seem sicker and sicker and really have mostly stopped eating at this point. At my appointment, we go over all the tests. He brings up to topic of this may just be IBS. I have done my homework and I don’t think I have IBS. Yes, this condition does explain some of my symptoms but not all of them. I am positive that I do not have IBS and I try to relay this feeling to him. He listens, or at least humors me at this point.

He starts looking for some scope results and I tell him the last time I had a scope done was several years ago and that he has never done one on me. He looks confused. He thought he had done one at the same time he did the colonscopy. He very reluctantly decides to order an EGD (scope) and this will be the last test that is ordered.

I cry for the 45 minute drive home, playing the what-if game in my head.

Waiting...

I wait 2 months until I see Dr. Frech again. By now I have turned 26 and am feeling so incredibly hopeless. I don’t know what direction to take and if I should even continue on this path of test after test. I have been seeing Dr. Frech for 6 months now and I am no closer to feeling any better. They have found bits and pieces of what’s wrong but haven’t been able to put anything together. I trust Dr. Frech with my life but I don’t know if he is going to be able to fix me.

At this next appointment, Dr. Frech seems lost but also still has a glimmer of hope. He decides to order some more lab work to check all the liver levels and an MRI of my liver to see if there is something there that will explain why there is so much pain in my upper right side. He also wants to see if there may be stones left in the bile duct from when I had my gallbladder out. This is called Sphincter of Oddi dysfunction. He also uses the words Irritable Bowel Syndrome (IBS). For anyone who has ever had any sort of digestive issue, these are dreaded words. In my mind, I always associated IBS with “there is something wrong with you; we just aren’t sure what it is”. I have flashbacks of my old gastro Dr. telling my parents I am basically crazy. Dr. Frech tries his best to reassure me and to just do the tests and we will go from there.

I have the tests done. Lab work comes back normal. MRI comes back normal. Great. 

Hydrogen Breath Test

This test was ordered after the results of the stool lab work came back. This test is done to check for a small intestine bacterial overgrowth. Once again this test requires to be fasting for 12 hours. When I arrive at the hospital, I am required to drink a sugary water substance (again). If I understood correctly, if there is a bacteria present in the small intestine, the bacteria will interact with the sugar and release a gas. They can measure the gas that is released.

The way the gas is measured is the crazy part. They give you a bag that you breathe into until the bag is filled. Once the bag is full, they use a syringe to suck up the air and then plug it into a machine which then measures the gasses. The whole test took about 45 minutes and once again, everything comes back normal.

Also at this point in time, I have started a new medication called Welchol. This medicine is used to treat bile salt diarrhea. Dr. Frech wants to try this as a trial to see if it can relieve my symptoms of diarrhea. We will evaluate at my next appointment to see if it is helping. 

Machine that measures the gasses

Stool Lab Work

At my next follow up Dr. Frech and I go over all the test results. I am starting to really worry that this is the way I am going to feel and no one is ever going to figure this out.

He decides to order some more lab work but not blood. Stool. AKA Poop. I personally think that this is so disgusting. And then I become even more mortified when I think of the poor lab technician who is going to have to deal with my poop.

So I get all the items needed from the lab to do the stool test. A hat, some wooden sticks, latex gloves, and a container for your specimen. I will leave the rest to your imagination.

Lab work results: Fat particles found in my stool. Yipee! Yes I am excited by this fact because it is an abnormal test result!

Dr. Frech’s office calls to let me know the results. Dr. Frech then orders a Hydrogen Breath Test. 

CT Scan

The next test is done 2 days later. They have to separate the 2 tests because you are not allowed to have the much radiation exposure so close together. So broken record, I am required to fast for 12 hours. I check into IMC Radiology in the morning. Little did I know that I was going to be required to drink something again (It makes me sick to think about drinking anything else). This time the contrast is already flavored with Crystal Light Lemonade. This is the easiest contrast I have ever drank (hooray)! I must drink the liquid at 8 ounce increments every 15 minutes for 1 ½ hours.

Once the liquid is gone, I am taken back and changed into a gown. An IV is inserted into my arm and I wait. Once they are ready, I am taken and laid down on the bed in the scan room. They do the first part of the CT scan which only takes a few minutes. For the second part, they inject the dye into the IV in my arm and then run the scan again. Once again, this part only takes a few minutes. The scanning part happens in a shorter amount of time than it did to drink all the contrast liquid.

All results for the CT scan come back normal. Not a single thing wrong. Oh boy is all I can think. I feel like crap all the time and they really can’t find anything wrong?

Contrast Dye you drink

Normal Tests and Gastric Emptying Study

The small bowel follow through and the video capsule endoscopy come back normal. Absolutely nothing abnormal is seen. At this point, Dr. Frech is thinking that I may have what they call Bile Salt Diarrhea. This condition happens sometimes in people after having their gallbladder removed. You can take medicine that binds to the extra bile in your intestinal tract and helps remove it from your system. However, he also wants to do more testing to make sure nothing else too major is going on because the bile salt diarrhea condition doesn’t match all the symptoms. It’s a good thing I have great insurance.

The next test he orders is a Gastric Emptying Study and then 2 days later a CT scan with and without contrast. Once again, you have to fast for 12 hours. I check into IMC Radiology Department at 8:00 in the morning. When you are taken back, they take you into a small room and then proceed to cook you “breakfast”. This lovely breakfast includes scrambled eggs, toast with jam, and a glass of water. However, in the scrambled eggs they put a form of radioactive dye/tracer so they can watch it move through your digestive system. You are also required to eat everything on your plate. Once the food is gone, they begin taking x-rays of your abdomen. They do this every 30 minutes for 2 hours.

All results for the gastric emptying study come back normal.

Video Capsule Endoscopy

This test requires a colon cleanse as well. When the Docs office tries to give me the same SuPrep I used for the colonoscopy, I refuse. Another lovely prep is called in. I pick it up and it is called NuLytely and this one is citrus flavored again. This time I get smart and add some Crystal Light Lemonade to enhance the flavor. They warn you not to add anything to the medicine but I read online about a lot of people trying it with no problems so I decide to give it a whirl. This makes it much easier to get down. Unfortunately they require you to drink it so many hours before the test so I get to spend from midnight to about 4 am drinking this liquid while everyone else is in la-la land.

I have to drive about 1 hour and 20 minutes to get to the office by 8 am. I check in at Dr. Frech’s alternate office in Salt Lake City. I am taken back and given a giant camera pill to swallow with a limited amount of water. After the pill is swallowed they place EKG-like stickers with chords all over your stomach. Then a belt is strapped around your waist which holds a monitor that all the chords connect to. This records the images that the video capsule is capturing. They use this method of imaging to mainly see what is going on in your small intestine.

Video Capsule Endoscopy; done. Results from small bowel follow through and video capsule will be revealed at next follow up appointment. 

Small Bowel Follow Through

This test involves fasting for 12 hours. I check into IMC at 8:00 in the morning. This test requires you to drink a white barium chalk consistency liquid every 15 minutes until the substance is gone. Try doing this on an empty stomach that is already nauseous. Great fun.

After the substance is gone, they take x-rays of your abdomen every half for 2 ½ hours. Then for your last scan, they make you lay down on a table and the Radiologist comes in. He has in his hand this lovely instrument that to put it in understandable terms is a long wooden stick with a hard ball on the end of it. He then uses this lovely wood stick and presses into the abdomen in certain spots to manipulate the intestines and is taking x-rays at the same time.

Small Bowel Follow through; done.

Colonoscopy…Round 2

I was given a bowel prep kit at the Docs office the week before. This time I take one called SuPrep. It is supposed to be cherry flavored. Little did I know the treat I was in for. This one is a lot smaller than the citrus flavored jug I received before.  The amount you are required to drink is a lot less. You take the 8 ounce clear liquid medicine and mix it with 8 ounces of cold water and drink the total 16 ounces of fluid in 15 minutes. You do this the night before your procedure and then the morning of. The night before wasn’t terrible. I got all of the liquid down and only gagged once or twice. The next morning…not so much. I got most of the liquid in and then threw most of it up. I was miserable and then had to make the hour drive to the hospital.

I checked into Intermountain Medical Center in Murray and the same usual prep stuff occurred. You fill out paperwork, they take your history, you get changed into a gown, and they start an IV. BP cuff goes on and they have your heart monitor stickers on before you are even taken into the procedure room. You are completely ready to go. I love Intermountain Medical Center’s process in their Endoscopy Department. Everything runs so smooth; their department runs like a well-oiled machine minus the repetitiveness not caring that you run into at other hospitals. Plus everyone that works there is knowledgeable and very kind. They seem like they genuinely care about the people that walk through their doors.

I only wait 15-20 minutes after I am ready to go. A tech comes to get me and we walk down the hall into the procedure room. You get on a gurney and the usual happens from here. I am becoming a pro at things that happen in the Endo Department. I am knocked out and again wake up in recovery.

Dr. Frech comes in and talks to my parents. He took some biopsies but found nothing else to explain the symptoms I am experiencing. Crap. I lose it at this point. I start crying like a little kid. My worst fear is that my new found Dr. will think I am crazy too. But he looks at me and I can tell in his eyes that this won’t be the case. He has such compassion in his eyes and I know that the choice to come and see him will be a good one.

He decides the next step will be to do a Small Bowel Follow Through and a Video Capsule Endoscopy. Sounds fun, right?

Dr. Edward Frech

8/20/2012 I meet with Dr. Frech. It was a typical appointment. Fill out pages and pages of paperwork. Vitals taken. Meet with the Dr. and go over health history and discuss all the worst case scenarios based off of a 5 minute conversation. Dr. Frech seemed interested and ordered some tests. The first was of course lab work. The second (my worst nightmare) another colonoscopy.

Lab work is done the same day. Tubes and tubes of blood are taken. He is looking for markers of Celiac Disease and of course any other worse case scenarios. The blood work comes back mostly normal. The markers for Celiac Disease are negative. The only levels that come back abnormal are my inflammation markers as well as my platelet level and sed. rate. Dr. Frech decides that proceeding with the colonoscopy is the best game plan. He will be looking for microscopic colitis or some form of inflammatory bowel disease to explain the high markers in the lab work. Colonoscopy scheduled for a week later.

4 Long, Long, Long, Years

I spend the next 4 years letting all of my symptoms get worse. I decided in my head that there couldn't be anything else wrong with me, after all I had my gallbladder and appendix removed and maybe all the sickness was just the effect of having these organs taken out, right?

Each year the symptoms seem to get progressively worse. The pain is awful; it has become an overall dull ache that would intensify if I did anything besides sitting. The nausea becomes unbearable and I feel like I am going to puke if I even look at the wrong type of foods. I get heartburn from eating or drinking anything including water. I get to the point that I stop eating for several hours before I have to leave the house in fear of not making it to the bathroom in time. Staples in my purse include Immodium, Pepto Bismol, and Tums. I chew on all of these like candy. When I do eat, the only things I can semi-tolerate are chicken soup, saltine crackers, white bread, and sprite (which also doesn't help the waistline).

I decide in July of 2012 that I need a Dr. and I need one now. Only problem is who do I go to. The only Gastroenterology clinic in Provo is located at Central Utah Clinic and their office policy required me to see the same Dr. that called me crazy a few years ago. I immediately nixed that idea and called my insurance company. It was decided that the next best location for me to go would be in Murray…a 40 minute drive from where I live, on a good traffic day. I got online and did I ever do my homework. I searched out Doctors and looked up their patient reviews. I found one who had good reviews and decided to give him a shot. Maybe he wouldn't think I was crazy!

Another ER Visit…in only 4 months??

Life has been good for the last 4 months and I am now 21. I wake up in the middle of the night with the same pains and all of the same symptoms again. I can’t keep anything down and it feels like I have a gallbladder again. I end up in the ER…again. I got this routine down by now. The usual tests are done.

Dr. comes in and says he is not sure what is wrong and that nothing obvious stands out. They give me a bunch of medicine (drug you out of your mind) and then send me on my way. I am not too worried at this point that anything is super wrong. Hopefully just a fluke thing…or so I thought.

Life Post Gallbladder Removal

So at this point I have had my gallbladder out and feel good about 50% of the time. It has been 5 months since my surgery. I am still having abdominal pain but the pain has moved to the lower region of my abdomen. I go in for an annual check-up at the GYN Dr. and she discovers that I have an ovarian cyst. She decides that surgery needs to be done to remove this cyst. I discuss with her the intermittent abdominal pain that I am having and she suggests having my appendix removed since they will be in the same area. Dr. Rasmussen is contacted (he also took out my gallbladder, we are becoming good friends at this point) and he agrees to take out my appendix.

Surgery day arrives. Everything goes well, ovarian cyst removed and appendix removed.

At my follow up appointment with Dr. Rasmussen we go over the pathology report and the appendix is normal with no abnormalities. But I feel great. I feel like a normal person again. No pain, no sickness!! 

Hallelujah!! 

Surgery Day

Surgery!! I am so nervous!!

I check into the hospital mid-morning. Labs drawn, vitals taken, and changed into a gown. They make you lay on an uncomfortable gurney and this is when the freak out really begins. It also doesn't help that you lay there for 2 hours. A nurse comes in and an IV is started. The Dr. comes in and makes sure that I haven't changed my mind. I am rolled into a holding area where the Anesthesiologist comes in and has you sign your consent. They give you some relaxing drugs and wheel you into the Operating Room. Lights out.

I wake up in post-op and this is when the real fun begins. Pain. Can't breathe. More pain. I end up being admitted to the hospital overnight for observation due to the fact that I stop breathing when I sleep. In the morning I meet with the Surgeon and am discharged that afternoon.

It takes about a week to feel normal and I am relieved that I feel somewhat normal. But I am not totally convinced my problems are solved.

Another ER Visit

It's been 5 months since my Gastroenterologist told me I was crazy. I wake up in the middle of the night in excruciating pain that I cannot control. I am so sick and can't keep anything down. Off to the ER we go. Within minutes of meeting with the ER Dr., he is suspicious for gallstones or something wrong with my gallbladder. A few tests are done and his diagnosis was confirmed. Gallstones.

A week later I meet with the surgeon. He says it needs to come out and I 100% agree with no hesitation thinking that this will solve all the problems. He is also surprised that the Gastroenterologist could not diagnose this as I had the classics symptoms. Surgery is scheduled for the following week.

First Colonoscopy

At my next 2 week follow up, I have now turned 20. At the appointment I only meet with the NP. He thinks that on top of everything else, I am also extremely dehydrated. He believes the next best step is to do a colonoscopy and orders extra fluids as well.

At this point, I am not too nervous. He informs me of the bowel preparation that will need to happen before the procedure. Still not too nervous. Then I go to the pharmacy to pick up the bowel cleanse and become a little nervous. The jug is larger than a gallon of milk. They tell you it's flavored with citrus to make it taste better. Ok.

Luckily, it's right after Christmas vacation and all my roommates are gone. I start the prep. This particular prep requires you to drink 8 ounces of the fluid within a 15 minute period and start over every 15 minutes. About 45 minutes into drinking this nasty liquid the runs begin. You spend most of the next several hours on the toilet. It's like someone hooked a water faucet to your butt and there is nothing you can do to control or stop it. After a few more hours of this it's all you can do to not throw up the liquid. If you throw it up, it does not cleanse you out properly and they could cancel your procedure. I finish the liquid and am in tears at this point. I believe that they try to kill you before they heal you.

Next morning, I check into the hospital. This procedure is the same as having a scope done. Except when they have you all hooked up and ready to go, you roll onto your left side and you are knocked out. 20 minutes later I begin waking up in recovery and hear the Dr. talking to my parents.

The first words I hear is that they found a polyp but no other problems to explain my symptoms. He then proceeds to tell my parents that maybe I am making up my symptoms and they should explore alternate means of finding out what's wrong with me. Great. He thinks I am crazy. I am crushed. The one person that is supposed to be on your side doesn't even think that anything is wrong with me. I finish waking up and want out of the hospital. I begin to believe him, and decide that I won't see him anymore. I have given up hope and decide that maybe I am just destined to be a sick person.

Hell Begins Again...

At this point, I am 19 years old. My symptoms are back with a vengeance. I decided that it was maybe time to start seeing a Gastroenterologist. I found a local Dr. and began meeting with him as well as his Nurse Practitioner. Right off the bat, they ordered an EGD (scope).

For those of you that have not had one of these procedures done, this involves fasting for 12 hours. You check into the hospital and get changed into a lovely hospital gown. They put an IV into an arm. When it's your turn, they take you into the procedure room and get you ready. You are hooked up to monitors that monitor your BP, heart rate, and oxygen. A mouth piece is then inserted into your mouth. An Anesthesiologist knocks you out and a few mintues later it's all over. Pretty easy procedure.

Results from scope: no abnormal findings. A 2 week follow up is scheduled.

A Second ER Visit...

A week after Halloween and being diagnosed with the flu, my symptoms started up again. I tried to wait it out and see if things would get better. Unfortunately, my parents were a little more concerned and took me back to the ER.  Again several tests were done and this time the Dr. diagnosed me with an ulcer.  They pumped me full of medication and sent me on my merry way. A few days later, I had a scope (EGD) done to confirm the ulcer. I was put on medication for a few weeks to help. From this point on, it would be a few years before my problems began again.