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.