Ultrasound, Labs, and Feeding Tube

I finally hear from Dr. Frech's office. An ultrasound was ordered as well as a repeat hepatic function panel. I had these done on December 31. I thought I would end the year right. Ha.

I also had the feeding tube placed the same morning. I had a very hard time with the placement of this nasal feeding tube. It felt like my sinus was punctured. Then every time he moved the tube in and out I could feel it in my stomach/intestines. Not a pleasant feeling. So for 4 days straight my nose has been a faucet. To top it off, I now have nasty looking sores at the end of my nose. A tube and sores! Man, I am a sight for sore eyes!

Check out the sores!

Feedings are going well. I have gained some weight. Still have my goal to gain 15 pounds in 2 weeks. Not realistic, I know. But wishful thinking that I can gain the weight, get the tube out, and have the surgery and be done for 2015!!

Just waiting to hear from Dr. Frech's office for results. I have an appointment to see Dr. Rasmussen this week!

Dr. Sherman Smith

I ventured out in the massive snow storm today to meet with Dr. Sherman Smith. The one day I have plans, it decides to dump 10" of snow in 4 hours. Just my luck!

Dr. Smith is a very nice Dr. and I was very impressed with his knowledge and assertiveness with my case. Dr. Rasmussen had called him ahead of time which helped a lot!

Let's just say from the beginning that there are not a lot of options at this point. I would have more options if I had some stomach left, but since most of mine was removed nothing can be reversed. I may just have to live with the reflux and the gastroparesis for now. I may just be one of the unlucky ones with this. But the pain issue should and could be resolved with surgery (he believes).

The plan right now is to gain at least 15-20 pounds. Whether I do that on my own or by TPN (basically vein tube feeding) or nasal feeding tube it needs to happen first. Once the weight has been put back on, I will be cleared to have surgery. He says that at this point, I would have a very hard time withstanding another surgery. This next surgery will be an exploratory surgery to release adhesions/scar tissue and should happen in 1-2 months. The bowel will also need to be run by hand to make sure there is no deformity or obstruction in them. The small intestine will also need to be released from the abdominal wall as to not cause any future problems.

However, the most important pending issue is with the liver. Dr. Smith says the only things that cause this type of edema in the liver include blood clot, infection of the ducts, or beginnings of liver failure. This is the part that scares me! He said that I absolutely need to follow up with this and at least have a CT angiography done to rule out blood clot in the liver (now if I could get Dr. Frech to call me back about this). He also said that he absolutely recommends to not take out any more stomach. This will only cause more problems and this should be a last ditch effort to save my life basically.

I was so appreciative with how he just took charge and said this is what I will recommend to Dr. Rasmussen. He wants me to get back in to see Dr. Rasmussen in the next week or so. He will call him and let him know his recommendations.

I do feel a lit bit better about things after today. The liver stuff scares me, but there is no point in worrying until I know for sure I have something to worry about. I can handle surgery and I trust Dr. Rasmussen to handle this part. Should have another update in a week or so and will continue working on gaining some weight!

Follow Ups and the ER...again!

It's been a while since I have done an update and a lot has happened so I figured it was about time. I have been talking with Dr. Rasmussen the last couple of weeks and trying to figure out the next steps.

Dr. Rasmussen Visit:
We had decided that the feeding might be the next best option to buy us more time until I can get into to see a different Doctor. I will be seeing a Dr. Sherman Smith in SLC who specializes in more complex cases like mine. At my follow up with Dr. R, he says the feeding tube is still a choice at this point so I opt out of it. If I don't have to have a tube shoved in my nose, I am surely not doing it. We also go over some more info he got from other surgeons and nothing looks too promising. The gastric stimulator is not an option because of the location of where the electrodes are implanted. I don't have that portion of my stomach to do this so at least this is ruled out. Right now, we will wait and see what Dr. Smith says.

Dr. Frech Visit:
I see Dr. Frech for another follow up. He can't agree to doing any other surgery except a laparoscopy for adhesions at this point. He thinks anything else might be too extreme for my body and weight to handle.  He wants to check some liver labs because if the massive amount of itching along with bloody noses I have had.  His office will be in contact with the results. I won't see him again for 3 months unless a surgery gets scheduled.

Emergency Room:
On the same day I saw Dr. Frech I start feeling crummy in the evening. I start getting some intense pain in my upper right side. I decide to take a hot shower since that usually helps and take my pain medications. I try to go to bed and about 20 minutes later I start having severe chest pain and shortness of breath accompanied with the right upper quadrant pain. I decide that it might be best to be checked out in the ER since it's only getting worse. I have my sister drive me over. It's funny how when you think you are dying you seem to hit every red light on the way to the ER. When we get there, I am shaking so bad I can't even stand. There is a line to check-in.  A nurse brings over a wheel chair and makes me sit down. I get checked in and get taken straight back to a room. I guess when you say chest pain and shortness of breath, they take it pretty serious.  I get an EKG right off the bat, which thankfully is normal. I get blood drawn and some morphine as the Dr. is asking me questions. A CT is ordered and we wait. I dry heave and get zofran then morphine about every 10 minutes. I repeat this cycle for about an hour. Luckily, one of my sweet friends is my nurse and she did such an awesome job and got me Meds before I needed the next round. The CT with IV contrast is done and we just wait for results. The Doctor finally comes in and gives the results. I have periportal edema. Something wrong with my liver. The radiologist says it's seen in patients who have excessive IV hydration, since I have had no IV hydration there is something else causing it. The Dr. says there could also be something wrong with the ducts in the liver but since my WBC count isn't high and liver labs look ok, he's not too sure. He decides to call up to my Gastro Docs office to see who is on call and see what to do.  Of course my luck, he tries for an hour and a half to get a ahold of someone and it's a recorded message that keeps hanging up.  He decides to discharge me after 5 hours and gives instructions to get a hold of Dr. Frech in the morning. If I get a fever, I am to report back to the ER immediately to be admitted.

Game Plan:
With it being Christmas, I am just waiting,  waiting to hear from Dr. Frech about the ER visit and then to see Dr. Smith. I trying finding information on periportal edema online. I can't find anything that looks good. It all sounds scary. So again, we wait.

One Year Post Revision Reflection

I can’t really believe that it has already been a year since I was admitted to the hospital for the surgical revision to my gastric pouch. I can’t believe how much has also changed in a year and that I am in no better of a boat than I was on that December day one year ago.

It has been an eventful year still filled with Dr. appointments, feeding tubes, lab draws, medication changes, EGD’s and colonoscopies, CT scans and MRI’s, and who could forget that crazy April surgery.

I definitely eat more than I was able to a year ago but only because I am terrified of having a feeding tube placed, not because it feels any better. I still have extreme pain when I eat food and get full more quickly than I think I should. I can eat no more than ¼ cup of food in each sitting and that sometimes is pushing it. I reflux my food all the time and it is a daily battle to keep what I swallow inside and not on the outside of my body. I hate food. I no longer find any joy in eating and nothing sounds appetizing to me. I eat only to maintain my weight (which is a constant struggle). I still have not tried any form of red meat and drink nothing more than water and Trop50 orange juice. I struggle with raw veggies and fruit and let’s not even go to the bread/tortilla area. I eat less processed food and no fast food. This part is a good thing but my weight is severely suffering.

This year also included having my first emergency surgery. That was definitely a blur filled with extreme pain and vomiting. I choose not to remember much of that hospital stay. All I remember is choking down a yogurt and lying straight through my teeth to get out of there. I mentally couldn't handle one more day in that hospital. Dr. Rasmussen laughs at me because he says that he has never had a patient beg to go home like I did that day!

(This picture is from my 12/4/13 surgery hospital stay)

(This picture is from my 12/4/13 surgery, gotta love a steri-strip reaction!)

This past year included NO EMERGENCY ROOM visits and NO IV THERAPY appointments. Yippee!!

This year also included having a feeding jejunostomy tube placed. This tube started out fine but these tubes bring a whole new set of problems. By the time September rolled around, the tube caused more pain than the feedings were helping so we took it out.  Best day ever!!

I still have my monthly Dr. appointments. It’s a good thing no one is trying to get rid of me yet. I only wish I was a black and white patient and not an extreme rainbow of colors kind of patient. I want this problem to resolve and I am definitely no text book case. I try to make my Dr.’s lives simple and I can’t wait for the day that I can walk into their offices and say I feel great!

So…one year later. We still are waiting for a decision of what to do next. Waiting and waiting. 

Waiting and Waiting

It has been a very long 13 days with not a whole lot of news. It was also the long Thanksgiving weekend (which I spent every day being sick). I heard from Dr. Rasmussen over the weekend a couple of times. He said that he has not found any great answers in surgical publications yet. He also said that he has sent an email to other surgeons looking for advice and would keep me updated.

I find myself searching everything I can on the internet and only becoming more terrified of what is going to happen next. I have decided to lay off the google searches until Dr. R knows what he wants to do. However, I do suggest to Dr. R the possibility of placing a gastric stimulator to help with the delayed emptying. I met this cute girl who had one placed for gastroparesis several years ago and she has greatly improved her life since then. She has been such a blessing in disguise. Dr. R requested more info on this.

So right now we are just waiting. Waiting to hear anything from anybody. Waiting is so hard! Being sick makes waiting harder. You start coming up with scenarios in your head of how things could go, for better or worse. The only thing that keeps me going every day is that I feel like I am a lucky one. I don’t have a terminal illness or some horrible disease that I will have to live with every day. I will one day be cured of all this and feel like a “normal” person again! I find myself being grateful for the small and simple things these days!

I am pretty sure that my goal for 2015 is shot. I wanted to pay nothing more than a copay for the next year. But as the days continue, I find myself slipping from that goal and more into the reality that things aren’t looking so hot for 2015. Hopefully we will know something very soon!

Tests, Tests, and Decisions

It has truly been an overwhelming week filled with too many hospital trips and Dr. visits. By the end of the week, I am totally exhausted both physically and mentally. I can’t believe how much these simple tests are beginning to take their toll on my body.

To start the week off, I had an EGD at IMC with Dr. Frech. The EGD went well. I am so used to having this procedure done that I just through the motions. I check into the hospital and luckily I am Dr. Frech’s first case so I won’t have to wait long. My sisters accompanied me this time. I get ready and am sedated and 15 minutes later I am awake. Dr. Frech didn't find anything to explain any of my symptoms. The anastomosis is wide open and doesn't reveal any form of stricture. He suggests going along with Dr. Rasmussen’s plan of the barium swallow. He would like a copy of the test and wants to know what Dr. R’s next plan is.

EGD Prep at IMC

Normal EGD and tiny tummy!

On Wednesday, I am scheduled to have the barium swallow done at UVRMC. My Mom accompanies me to this test (I had a meltdown the night before so my parents are very concerned). This is the test I dread having done, nothing like fasting and then getting to drink some barium chalk first thing in the morning. Luckily, I had an amazing Radiologist who took the time to go over my history and ask some questions about the symptoms I am having before doing the test. He decides to do it a little differently. I only have to swallow 2 gulps of barium chalk before he identifies the problem. He takes x-rays for the next five minutes and then says he has all the pictures he needs and I am done. He explains the test results to me and my Mom. The first problem is that I am having some mild delayed emptying of the stomach, which is a functional issue. The second and major problem is the reflux. I had spontaneous reflux throughout the whole procedure. He seemed surprised given my surgical history that the problem was this severe. He said he didn't want to give me any more barium because there was a good chance that I would have aspirated it into my lungs.

Luckily, I don’t have to wait long to see the Dr. for the results. I see Dr. Rasmussen the following day and we go over the results of all the tests. At this point, he is not sure of what to do. He says that he could definitely put a scope in and clean up all the scar tissue and adhesions and release the intestine and stitch it up, but is reluctant to do so at this point due to the risk of the surgery. The functional issue of the stomach is more complicated. I have already taken medicine to stimulate my stomach to move but that hasn't helped my symptoms. He said the next step would be to take the remaining portion of the stomach out and connect esophagus straight to intestine. The next issue of the reflux is where things get really complicated. I should not have reflux at all. In severe cases, the surgery that is performed for reflux is the nissen fundoplication (which has already been done and come undone) or to have gastric bypass, which is basically what I have had done. I have already taken the preventative steps to avoid reflux. He says there is an experimental procedure that involves putting a magnet on top of the stomach to control the reflux. The only problem with this procedure is that it is experimental and no insurance company will cover it.

Dr. Rasmussen wants to research this a little bit more before we decide what the next step will be. He decides that he will email me within the week before we decide anything at this point. I don’t really know which direction to even lean towards at this point. Having the rest of my stomach removed doesn't remotely scare me. I have read a lot about the procedure and I have basically lived this way in regards to eating and lifestyle changes anyways. I would like to remotely feel well and be able to eat without wanting to die. And I am willing to do anything to get this point.

So now we wait.

Tests, tests, and more tests!

Things are still going the same as far as pain and eating. My pain is continuing to increase daily and my level of eating/appetite is gradually decreasing.

I am still continuing to lose weight despite my massive efforts at maintaining my weight (yes, I have resorted to chocolate!!)

We go over everything from the last visit. We do a review of symptoms and pain. After hearing all this and about my follow up with Dr. Frech, Dr. Rasmussen wants an upper GI series (barium swallow) done. I tell him that Dr. Frech and I decided not to do this test and went with the EGD instead because of the false positive the barium swallow seems to give. He insists on having one done because he will be looking at the test from a different perspective than Dr. Frech would be. He wants to look at the anatomy of everything versus the function of the stomach and why all the reflux. He said this test will give him an idea if the anatomy is the source of some pain or problem.

Dr. R says that if the hiatal hernia is causing all of the problems that it will be very hard to fix. I don’t have enough stomach left to properly do a wrap (nissen fundoplication) so he would have to come up with some way to fix the hernia by not doing a wrap. He says that he can also go in and release the intestine that is attached to the abdominal wall but I run a very high chance of that intestine having a hole in it from the feeding tube placement/removal. If there is a hole in the intestine it will have to be repaired so it won’t leak. As far as removing scar tissue/adhesions, he said he can clean up what’s there but seems reluctant to go this route. He wants to wait on the tests before he decides what to do. I don’t want anyone jumping in to doing unnecessary surgery.

So the plan for now is to have the EGD done on Monday with Dr. Frech, have the barium swallow done after EGD day at UVRMC and then see him again on Thursday to review all the tests and make a decision about future surgery.