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. 

Dr. Frech Appointment

I have my follow up with Dr. Frech. Things at this appointment go pretty well and I don’t have a nervous breakdown again, hallelujah!!

The first thing we go over is weight. I weigh 124 lbs. at this appointment (thanks to bloat weightJ). Dr. Frech is satisfied with this number so I feel we are out of the woods with the weight issue and being threatened with placing a feeding tube again.

The next thing we discuss is the issue of having a hard time eating anything with substance. I am still having major issues with reflux and food coming back up. If any of you have seen the movie, Wreck it Ralph, the little girl explains that when you burp and vomit at the same time, it’s called a VERP. This is my life all the time. I do fine with liquids but anything like bread, chicken, or raw veggies and fruit comes back up. I can’t tolerate more than a couple of tablespoons of food in one sitting and I should be able to eat at least ½ cup in one sitting. I also can’t lay down flat at night. This makes me lean more towards the hiatal hernia being the cause of this problem. He is concerned that the anastomosis may have shrunk (although not likely) since the last EGD. He thinks that it may be the pouch is just not functioning anymore. He suggests doing another barium swallow test to which I refuse. I tell him that the last two we did had a false positive and that I don’t want to drink any more barium for the rest of my life. He laughs and agrees that it might not be the best route of testing. He suggests doing another EGD with the intention of doing another pouch stretch and to also possibly find a source for the pain near my liver. He is hoping that he can get the scope far enough through the intestinal tract to find something but he hasn't had a good success rate in doing this. We both settle on waiting several weeks to give my body more time to become adjusted and heal. I decide to repeat the EGD after Thanksgiving. He says if things get worse to call and we can do it any time before then, he will squeeze me into his schedule.

He also hinted that as much as no one wants to do a repeat surgery that might be the only option for reducing the pain that may be related to surgical adhesions. That is the only way to 100% know for sure that the pain issue is scar tissue. He said most people don’t have “pain” when there is scar tissue present, but it is not unheard of. And since I don’t fall into the “normal” category, it may be the case and surgery may be beneficial. 

Where to go Now? Dr. R Follow Up

I have contemplated for a while if I should even do this blog update. Things aren't looking so great and I am really starting to get down and depressed. I am really tired of fighting this and always being told “I don’t know”.

I had my follow up with Dr. Rasmussen yesterday. We have decided to stop physical therapy because it is obviously not helping. The pain in my sides is worse and every time we did a physical therapy session it aggravated the pain. The physical therapist thinks that the pain in my right side is related to a buildup of scar tissue while the pain in my left side is not consistent with scar tissue and he is not sure what that problem is. So physical therapy has been stopped.

Dr. R also wants me to start taking another medicine called amitriptyline. This medicine is in the antidepressant family of drugs. However, it has also been used to treat chronic pain related to nerves. He thinks that a trial of this medicine might be of some benefit to me. He also wants me to start weaning myself off of the Norco if I can. I am becoming dependent on it and this is worrisome to him and me. His hope is that the amitriptyline will work and I won’t have to take anymore Norco.

Dr. R also wants me to change my vitamins a bit. I am supposed to start taking a vitamin B complex. This will include most of the B-vitamins in one pill vs. a different pill for each B. My B-12 level came back at 345 and the low number is 345, so I am sitting right on the fence of this one. The hope is that this will increase my energy level and help me to not be so exhausted in the evenings. He also wants me to try taking some melatonin at night to help me sleep. I think if I could get a few hours of sleep in a night, I would feel 100 times better.

My weight came in at 123 lbs. This is down 6 pounds from tube removal weight.  Dr. R was OK with this number and so am I. I am doing pretty well with eating. On a good day I am averaging between 800-1000 calories. I know it is not what it should be yet but I am getting better.

I have a complete melt down at this appointment as well. I told Dr. R I don’t want to be the boss anymore, I want someone else to just take charge and say this is what we are going to do and do it. I am so tired of being this strong person who has it all figured out and is so brave. I try to put on a face for people but I am having a hard time doing this lately. I am mentally, emotionally, and physically exhausted and just don’t know how much more I can take or handle.

I don’t feel like I am asking for a whole lot either. I am willing to live with some pain but not this extreme. It hurts to sit, to move, to lie down, to breathe, or to basically do anything. There has to be something that will resolve this pain and I don’t know if I have it in me to wait and figure this out.

So the plan for now is to make all these medication switches. I am supposed to see Dr. R again in 4 weeks for a follow up. He doesn't think that surgery at this point would be beneficial but this is not out of the cards yet. There is also another procedure that can be done to the nerves in my left side that involves injecting some numbing medication to calm the nerve then they go in and surgically find the nerve and take care of it. But these aren't options for now. Hopefully the medicines will begin to work and soon. I see Dr. Frech for his follow up in 2 weeks. 

Physical Therapy

I started physical therapy at the suggestion of Dr. Rasmussen to rule out abdominal wall strain.

My therapists name is Trevor. He says that we should know in 2-3 visits if the physical therapy is going to help.

My therapy plan involves taking a metal object (looks like brass knuckles) coated in cocoa butter and rubbing it with pressure across my abdomen and over all scar areas. He says this increases the blood flow to the area and tissues and allows it to heal and become less painful. Seems weird but I am going with it right now. It has to be one of the most unpleasant feelings. It hurts and only seems to be aggravating my pain instead of relieving it. He also gives me some abdominal wall stretches to do to increase the strength back into my muscles.

I have 3 more visits scheduled. We should know after these 3 appointments whether the therapy is going to work or not. 

15 Month Reflection

I can’t believe how much my life has changed since June of 2013. When I look back on everything that has happened these past 15 months, I am overwhelmed. The first things that come to my mind aren't pleasant. I think of all the surgeries, hospital stays, tests, scans, needle pokes, feeding tubes, being put to sleep, how many people have seen me naked and exposed, and of course all the hundreds of Dr.’s visits to just name a few. This list doesn't begin to include everything required to get to making that decision 15 months ago.

Dr. Frech made a comment at my last office visit that prompted me to write this post. He said that where I am right now, he can’t truly say that we made the right decision all those months ago. He feels like at some point he may have let me down. But he also agrees that we didn't have any more options.

This is honestly how I feel about everything at this point and the decision that was made!

1.       I think that overall the right decision was made. I had no more options but to take out my stomach. If I decided to go against everything the Doctors were telling me at that point, I don’t know where I would be today.

2.       I feel like the weight loss is my reward for all the Hell I have been through. I lost a total of 105 lbs. Most of that happened in 6 months and the rest happened gradually over the remaining 9 months. I never in my life thought that I would have to worry about my weight. I was always on the heavier side. Now I also feel like I have an eating disorder. I am constantly obsessed with what I put in my mouth. If it’s something I shouldn't be eating I will spit it out. I count calories all day long. Food is not enjoyable to me anymore, it is a nuisance.

My favorite comparison of how I used look compared to now!

My daily fitness pal entries remind me I don't eat nearly enough!

3.       I am so thankful for my two Doctors. I am sure without them at this point I would probably be dead. They aren't your typical Docs. At least I feel like they really do care about what happens. They haven’t washed their hands of me yet.

4.       There are days where I do wonder why me. When I wake up and don’t feel good and can’t eat and the scale keeps going down and my pain is a little out of control I do wonder why I chose this route. But then I am quick to remember that it could always be worse and someone else’s shoes are heavier than mine. I may feel like my road is difficult at times, but I have my life and my family who supports me unconditionally.  

One of my favorite quotes through all of this!

5.       I do feel like the original problem was fixed. But fixing the original problem just created a new problem. I feel like my health is a domino effect. Never did anyone anticipate that I would have as many issues as I have had. They give you all the worst case scenarios and it never crossed my mind that I could fall into that category of people. I should have expected this given the statistics I was already starting with. I read somewhere that 2% of people who have their gallbladder removed will develop bile reflux and of that 2%, 99% of people respond to medication. Geeze I should have known!

So at this point, I can say mostly YES! The team made the right decision. Besides, there is no going back right!? 

Dr. Frech 3 Week Post-Tube Removal Follow-Up

I go to see Dr. Frech today for a three week follow up since the feeding j-tube has been removed. At this appointment I weigh 125.7 pounds. I am slowly losing weight since the tube was taken out but not at a drastic rate. We go over quite a few different things and he seems pleased with my progress.

The first issue we go over is the pain that is still in my left side. He still is not convinced that it is an abdominal wall strain like Dr. Rasmussen is. He thinks it still may be more related to adhesions caused by the previous surgeries. He said that at this point, surgery would not be a good idea and would probably cause more problems. He wants to wait and give my body more time to heal.

The second issue we go over is the colonoscopy results and the size of the pouch. He thinks that my intestines may just be altered differently since the last surgery but doesn't want to rule out anything with that. A repeat colonoscopy may need to take place further down the road. He also thinks that my “stomach” has not increased in size in 10 months because I haven’t used it too much in that time. I still cannot eat more than ¼ cup in one sitting without getting sick. Both Dr. Frech and Dr. Rasmussen say I should be up to ½ cup in one sitting. There is a possibility of doing some pouch stretching down the road if I can’t get the volume up. He also has instructed me to take Zofran 30 minutes before I eat to see if that will help the symptoms and be able to push food volume a little more.

(This next section may be too much information for some, just skip over it!)

The next issue we go over is trying to regulate my bowels. Let’s just say it is not normal for someone to go from diarrhea every day to not using the bathroom for a couple of weeks while taking daily doses of Miralax. So, I am to try a new medication called Linzess until I see Dr. Frech again. Hopefully that will make a difference.

Right now the plan is to just basically wait. I am to give my body more time to heal and to try and keep up on the nutrition and keep my weight stable. He said that if I start getting closer to 120 lbs. that I need to call him right away. He also wants me to try and double my ensure shakes to keep my weight stable.

Dr. Frech wants to see me again in 6 weeks to recheck weight, follow up on medicine, re-evaluate pain, and hopefully make some decisions. If anything else needs to be done this year, I want it done this year. I don’t want to pay nothing more than a copay in 2015. That’s my goal!!

Lab Results

Dr. R’s office calls to give me all the results of the lab work.

The nurse said everything looked fine and that all the numbers came back good except my vitamin-D level. It was low and so Dr. R wants to put me on a strong dose for 2 weeks and then to go back to a regular dose after that. The strong dose consists of taking 50,000 IU for 14 days and the regular dose consists of 5,000 IU daily. 

They will re-check the levels in 6 months.

One Week Post Tube Removal

I have my one week follow up with Dr. Rasmussen to make sure the tube incision is healing properly and the granulomas are no longer an issue. I was hoping this appointment would be nice and short but it turned into a nice and long appointment. 2 hours long...but I can't really complain since I love that Dr. R is so willing to spend so much listening to me and addresses all my worries. 

My weight is 128.6 so I have not lost any weight in a week! Yippee!!

The tube incision is healing up and the granulomas are no longer an issue. My abdomen has a nice bulge/fold in it and I also have the appearance of a second belly button from the tube. Dr. R says to try and massage the area to loosen it up or in 3-6 months they can go back in and surgically release everything on the inside to make my abdomen look better. It’s looking a little Franken-stein-ish right now. My abdomen appearance definitely tells a story at this point!

The pain in my left side is not gone and the pain in my right side is back. The left sided pain we were all hoping was related to the tube is not related to the tube. Dr. R is really baffled by this at this point. But that seems to be the common story these days. He also feels that it still may be related to the muscles and the abdominal wall since physical activity makes the pain worse. He thinks that doing some physical therapy may be helpful at this point. He orders electrode stimulation, ultrasound, and TENs therapy.

We also talked about the idea of abdominal migraines. He said if physical therapy doesn't work we may want to try treating the pain as if I were having a migraine by taking the medication Imitrex. He says they can’t really explain why this happens but it is possible. However, he says my symptoms don’t match up very well so we aren't moving in this direction yet.

We also talk about labs and decide to finally put me on a yearly schedule. I am to have all the post-op bariatric labs done. This includes the following: CBC, CMP, Vitamin B-12, Thiamine, Vitamin D, PTH, HgbA1C, Iron, Iron binding capacity, Iron Saturation, Ferritin, Lipid Profile, and Folate. I will also have these done yearly from here on out.

Game plan for the next few weeks:

1.       Don’t lose any weight

2.       Start physical therapy

3.       Get labs done

I see Dr. Frech next week. I haven’t seen him since my colonoscopy/EGD. We shall see what he would like to do. My next appointment with Dr. Rasmussen will be in 6 weeks to give some time for the physical therapy to work. 

133 Days

After 133 days (19 weeks), I have officially had enough with this feeding tube. It is so painful all of the time. It burns and pinches and is oozing and I can’t sit down anymore. This is making it very hard to sit at work all day long. I have maintained my weight for almost 2 weeks and decide that I want the tube taken out today! This means I have to convince Dr. Frech that I can have it out. After several phone calls and some persuasion he says I can have it out.  Yippee!!

I get into Dr. Rasmussen’s office that afternoon. We go over a few things and then it’s time to have the tube taken out. Definitely not a pleasant experience.  The actual pulling of the tube didn't hurt too much, more of a weird sensation and a couple of pinches. Then I have the pleasure of having it closed with silver nitrate again. Oh my. That is so painful! I grit my teeth and make it through. I have to come back in a week and have him check the opening to make sure it closes/heals properly. I also have some granulomas that if they don’t heal, he will have to cut them off. No big deal. We also discuss the weight issue. Right now I am sitting at 127 lbs. with a BMI of 19.9. He said I should maintain where I am at, and not to go below 125 lbs. If I drop to 120 lbs., that will give me a BMI of 18 and we will discuss having another feeding tube placed. I am walking a fine line on the weight issue.

The gauze gives it the full effect

Close-up of the hole left by the tube

I spend the next couple of hours not being able to move too much. The silver nitrate is what kills me every time.

I will see Dr. R in a week…and who knows; maybe it will be my last visit. Kind of weird! I see Dr. Frech in 3 weeks to do a weight check and re-address the pain issue (hopefully it will be gone with the tube being out). 

Barium Enema Results

I get an email from Dr. Frech that he has received the barium enema test results and has reviewed them. There are no extrinsic forces causing any form of pressure on the outside of the colon (no enlarged spleen or surgical adhesion's). For now the plan is as follows: he wants me to continue to optimize my nutrition so we can get the tube taken out and see if the pain is related to the tube. He will contact me with the biopsy results. 

Gravel Roads Only Create Dust

I found this quote by an unknown author the other day and it has become my new life motto. It seems so fitting for this blog post:

When gravel roads are all you've ever known, your learn to find BEAUTY in the dust.

Decisions Made:

I call Dr. Frech’s office to let them know that I have now lost 7 pounds since being off of the feeding tube and that the additional 14 day dose of antibiotics has not worked. I speak with his Medical Assistant and she informs me that Dr. Frech would like to proceed with doing the colonoscopy and we will go ahead and do the EGD for Dr. Rasmussen to verify there is no shrinking around the surgical anastomosis. This phone call happened on Monday. I speak with the scheduler and they want it done this week and both procedures get scheduled for Wednesday morning. I spend the next day slightly freaking out about doing the prep, but am relieved that Dr. Frech said I can use the feeding j-tube to inject the colonoscopy prep!!

Prep Time:

On Tuesday night, I start the prep at 5:00pm. This prep seems a lot less volume wise compared to some of the other ones I have done. It smells awful and for the first time since I have had the feeding tube, I am grateful for it. I spend the next hour injecting all of the prep followed by all of the water. It only takes about 10 minutes for the prep to take full effect and I get to spend the next several hours very close to the bathroom. I go to bed and try to mentally prepare myself for the next day. I get up at 5:00am to do the second split dose of the prep. The process starts all over again. Inject all the prep over the next hour and spend the next 3 hours near the toilet.

Procedure Time (Colonoscopy and EGD):

I am to check into the hospital at 11:00am for a procedure start time of noon. This means leaving my house at 10:00am. We arrive at IMC at 11:00am and I check into the Endoscopy Department. Then the waiting begins. I don’t go into a prep room until 12:30. Once I get back into a room, I change into a gown, get vitals taken and an IV started. I wait for about another 25 minutes before a tech comes to get me. I then walk back to the procedure room and get onto a gurney, it is now 1:25pm. I meet the Anesthesiologist who recognizes me from my last procedure there and he verifies a few things with me. I joke that it is never good when the staff begins to recognize you. Dr. Frech comes into the room and we chat about what he is going to do and apologizes for being 1 ½ hours behind schedule. He will do the EGD first followed by the colonoscopy and says it should take about 30 minutes to do both. He lets me know all the things he doesn't think it could be but also acknowledges with my case, it could be anything. Dr. Frech also wants to know how the prep went using the J-tube. I inform him it was marvelous to not have to drink it and that was the best way to do it! He informs me that I am his first patient ever that has used the feeding j-tube to do a colon prep! I am now all hooked up. This includes heart monitors, BP, pulse oximeter, and oxygen in my nose. Dr. Frech gives the go ahead to knock me out. I am first given fentanyl and then the propofol. I watch the clock and about 45 seconds later, Dr. Frech comes over and puts his hand on my head and tells me to relax and that’s the last thing I remember. It’s now 1:35pm.

The Results are In:

I wake up back in my room and first look at the clock. Its 2:25pm. Almost a full hour later. The nurse comes into the room and takes a last set of vitals and takes out my IV. I go ahead and get dressed and wait for Dr. Frech to come back and give me the results. He comes in just a few minutes later. Result time. The EGD had all normal results. There is no ulcer or any type of other malformation. There is no closure/shrinking of the surgical anastomosis. The size of the pouch is also the same size; it has not increased in size. However, the colonoscopy results were NOT normal. The first thing Dr. Frech mentions is that my colon is full of bile. We will have to decide what to do the fix this, it may be done by just taking Welchol again but this is not his main concern at this time. The second and more pressing issue he found was that in the left side of my colon he could not get the scope around the first turn. It took him a solid 10-15 minutes to work the scope through (a normal total colonoscopy procedure for him is 12-15 minutes). He says there is some sort of malformation that is occurring that is either twisting/kinking the intestine, shrinking the intestine opening, or surgical scar tissue/adhesions on the outside of the intestine that is forcing the intestine to close/shrink off. He also says that it all makes sense that there is pain in my left side and that the pain seemed to slightly subside after doing the colon cleanse. It could be that when I eat food, it can’t very easily pass through this part of the intestine which then causes pain. He seems very concerned and wants to order more testing right away. He orders a barium enema. I have never had one of these done, but it sounds awful. Dr. Frech then informs me that this test is pretty awful (speaking from his personal experience). He also says that this test requires a colon cleanse. Since I am already all cleaned out, he wants the test done the next day. He says to just stay on clear liquids when I go home and the test will be done the next day. I haven’t eaten solid food at this point for 2 days; luckily I am not even hungry at this point. He says that when he gets the results of the biopsy and the barium enema test he will call me and we will decide what to do next. When the nurse comes back she informs me that there are no openings for tomorrow but they can do the test right now. Dr. Frech gives the OK for this and then I am off to radiology.

Barium Enema:

The nurse comes to get me and I am still a bit loopy which probably helps me deal with this whole situation. A barium enema involves lying on an x-ray table and having a tube inserted into your rectum. They then inflate a balloon to keep everything inside of you. Then a series of barium and air is injected into the tube which fills your large intestine. This creates a lovely crampy and bloating feeling, along with pain and discomfort. They take a lot of pictures as you move around. Once they have the pictures they want, they drain the barium back into an IV bag and move you to another room to take post pictures. The tube is still in the bum for all of this. That’s about all I am going to say about this test. I would have rather been sedated for this test than for a colonoscopy.

Waiting Game:

So now that all the testing has been done, I just have to wait to hear from Dr. Frech. Once he gets all the results, we will hopefully get a game plan together and move forward with it. What that game plan involves, I have no idea. I hate this part more than anything. I hate waiting.

Beauty in the Dust:

Even after all this, I still can find the beauty in this gravel road of a situation. I am so grateful the I can call Dr. Frech my Doctor. He is so caring and compassionate with me. He knows when I need comforting and does such a good job at it. I am grateful that my family is always there for me and that my parents always come and hold my hand. I am grateful that IMC is such an amazing hospital and has some of the most caring staff I have ever encountered. I am grateful for modern medicine and that I am able to have these tests done. I am also grateful for an understanding boss and co-workers that cover me at work. I still have my life and that I am extremely grateful for. I keep telling myself that things could always be worse!

Rendezvous with Dr. Rasmussen

I go to see Dr. R for my follow up on the feeding tube and the weight. At his office, I weigh 130 pounds. That’s only down 2 pounds in a week from my visit with Dr. Frech. Not too bad. We discuss everything that Dr. Frech told me at my last visit a week ago. He agrees that taking out the feeding tube right now is too early. He also wants to wait at least a month and then depending on how I do, he will take it out if I can maintain my weight.

He doesn't seem sold on the idea of the small intestine bacterial overgrowth. He said that for the bacterial overgrowth, you usually don’t have a positive fecal white blood cell test which is what I had. And since I have been on a 14 day dose of antibiotics that I haven’t really responded to yet, he thinks it could be something else. However, he wants me to finish the last 7 days of antibiotics and see if I notice any difference. The next thing would be to proceed with the colonoscopy to see if it could be colitis. I also talk to him about the pain I have in my stomach every time I eat. It could be related to the possible bacterial overgrowth or it could be the anastomosis shrinking again. He suggests doing another barium swallow or an EGD to visually see the pouch. I tell him that I would love to hold off on any more testing and just finish the antibiotics out first. If I have to have a colonoscopy again, I want the scope done at the same time and to just forgo the loveliness of swallowing the barium again. Hopefully none of this will have to be done if my body would just decide to heal and respond to the antibiotics.

He agrees with following the FODmap diet but also agrees with me that this is the diet I am basically already following. He says to just keep eating the way that I am and things with my diet will turn out fine.

I also let him know that Dr. Frech cauterized the tube opening with silver nitrate to try and get rid of the granulomas but the granulomas are still there and it is still oozing. He says he can use silver nitrate again to try and get rid of the granulomas and I tell him no way! That was one of the most awful things I have had done!  He kindly lets me know that when he takes the tube out he will also use silver nitrate to close the opening. Not looking forward to this part at all!!

The plan for now is to continue trying to maintain my weight without doing the tube feeds. Finish out the antibiotics and then proceed with Dr. Frech if any more testing needs to be done. Also add in a probiotic once I finish the antibiotic. I don’t have another appointment scheduled. He wants me to call when Dr. Frech has given his OK to take out the tube and come into the office and he will just take the tube out.

I am slightly feeling like there may be a light at the end of this tunnel!!

Feeding Tube and Weight Update

I have another follow up with Dr. Frech to check my weight and to see how things have progressed with the small intestine bacterial overgrowth. I weigh 132 at this appointment; still 8 pounds shy of my target weight. However, we both agree that the tube may be the culprit of all my pain issues. Dr. Frech still feels that taking out the feeding tube at this point is premature and does not feel like it would be in my best interest to do this. Mainly because he is worried that I won’t be able to maintain my weight and the tube will have to be put back in. But because of all of the pain issues I am having, he decides that we can stop doing the tube feeds and try to maintain my calories and current weight for one month. If I can do this, he will give his ok to take out the tube and then hopefully this will resolve the pain issues. There are a couple things that we are going to have to do trial and error as well.

The first being that since I semi-responded to the antibiotic for the SIBO, he wants to try a longer dose and see if I just need more time on the antibiotic. If I don’t completely respond to the 14 day dose I will have to have another colonoscopy. The reason for this being that since I had white blood cells come back positive in the stool test and I haven’t completely responded to the antibiotics, it could be colitis. So hopefully the 14 day dose will work and I won’t have to have another colonoscopy (cause these are always so much fun).

The second thing we are going to try is the FODmap diet. Dr. Frech thinks that this will help me out and allow me to eat more. Not sure why. I basically follow this diet anyways with all the restrictions I currently have. So I have to just chop out a few more things and then I will officially be on this diet.

I also have some granulomas forming around the tube. This is my body just trying to heal around the tube but the tube won’t allow the skin to come together so the skin starts folding over on itself. He decides that he is going to cauterize the skin by using silver nitrate. This should also help cut down on the drainage from around the tube. I didn’t think much about him doing this. Little did I know how painful this would be. I couldn’t sit for the next 2 days. I either had to be standing or lying down. Sitting down put too much pressure on my abdomen and the area that was cauterized. It caused a horrible burning and pinching sensation. Needless to say, I will never let someone use silver nitrate on my abdomen again!!

So now the plan is to follow the FODmap diet. Continue the antibiotics for 14 days to hopefully cure the SIBO. Continue to focus on eating and maintaining my weight. If I can do all this, then I can have the feeding tube taken out in a month. I see Dr. Rasmussen for his follow up part this week. Whew. 

Stool Test

So I still have not been feeling great lately. I have no energy and if I sit somewhere for too long I pretty much fall asleep. I still am having pain in my side and have also been running the occasional fever. I am having a hard time eating as I get pain every time food hits my stomach. I am leaning more towards the idea that I don’t have the abdominal wall strain like we were all hoping for. I call Dr. Frech’s office to let them know what is going on and to see if there is anything we can do since my appointment still isn't for another month. Lucky me, Dr. Frech will be leaving out of town so I can’t get in to see him sooner than the first week of August. In the meantime, he orders a stool test to see if there is a bacterial infection going on.

This is one test I never wanted to have repeated. I have done it twice and this will be the third time. It is disgusting. They give you a cup and have you place your sample in it. Then you have to take it back to the lab. It’s an embarrassing, nasty test.

I get the test taken care of and wait to hear from the Dr.’s office. They call a few days later to inform me that the test came back positive for the small intestine bacterial overgrowth. I need to take an antibiotic that will wipe out all the bacteria in my intestinal tract. I then have to re-introduce the good bacteria back into my system by taking probiotics. The antibiotic lasts for 7 days. I will see Dr. Frech in 2 weeks, hopefully will be feeling a bit better.  

CT Scan Results

I got the results from my CT scan back from Dr. Frech. He said that everything looked normal for all of the surgery that I had. There was nothing he could see that would explain my pain. He also asked that I contact Dr. Rasmussen’s office to see if he could see anything different and offer an explanation.

I go to see Dr. Rasmussen and he has looked at the scan. There is nothing super obvious to him either. I do have some inflammation and dilation of the intestine but it is right where the feeding tube is. He is thinking that I have an abdominal wall strain. He gives me specific exercises/stretches that are supposed to help. He wants me to do them twice daily until I see him in August and also add in some strengthening exercises. Hopefully this will help alleviate these issues!

I had also gained 10 pounds but have since lost 4 so for a grand total of 11 weeks with the feeding tube I have gained only 6 pounds. Only 14 more to go! This might take a while!! 

One Year: June 26, 2014

Here is a recap of what has happened over the past year!

Counts:

4 major surgeries (June, December, and 2 in April)

5 Hospitalizations (June, July, August, December, and April)

3 Emergency Room Visits

7 weeks of IV Therapy (including potassium, magnesium, and fluids)

5 Scopes (EGD)

4 CT Scans

1 MRI

6 Abdominal x-rays

2 Nasal Feeding Tubes (12 weeks total)

1 (still current) feeding jejunostomy tube (8 weeks and counting)

Home Health deliveries and nursing visits

21 labs drawn

Countless needle sticks

Countless Doctor Appointments with both the Surgeon and Gastroenterologist

Weight:

Previous weight: 222lbs and BMI of 34.77

Lowest Weight: 117lbs and BMI of 18.32

Current weight: 127lbs and BMI of 19.89

Goal Weight: 140lbs and BMI of 22

Things I have learned:

• My family cares more for me than anyone in this life. They have never left my side and have been there for me through all of this. Including spending days (and nights) on end in the hospital. Their unwavering support and love keeps me going every single day! I can always count on them to pick me up when I feel like I have been kicked to the ground.
• I have the 2 most caring, supportive, patient, knowledgeable, and loving Doctors around! They have never given up on me and get just as frustrated as I do when I am not doing well. They listen to me and my concerns and don’t make me feel like I am crazy! They are more than just Doctors to me; I would call them my friends. Without the 2 of them, I am sure I would still be super sick…or dead!
• I have a fabulous support system of current co-workers, previous co-workers, and friends who will always stand behind me.
• I am stronger and have more courage than ever before! I know I can do anything and survive anything that is thrown at me! I am a survivor!
• I have learned to just laugh. Life is too hard. I try to take each day in stride and do my very best.
• 
  
  

At this point, I would say going through all of this was worth it. There are still days I might not agree to this statement but overall I do feel better. I can eat and not be sick and I don’t live in the bathroom anymore! I feel like I do have some form of normalcy and a semi pain-free life! I feel very blessed! It’s crazy to think of how much has changed in one year’s time. Not just all the physical changes, but emotional and mental changes also.  I am a better person today than I was a year ago! 

Lab Reuslts

I get an email from Dr. Frech that all the liver and kidney labs came back and everything is normal! My liver labs have greatly improved since the last surgery and everything else looks great!

Positive, upbeat news!

CT Scan Day

I check into UVRMC Outpatient Radiology at 3:00 in the afternoon. I have been fasting for 4 hours. I am also terrified because I know that I am going to have to drink the contrast and I know what it tastes like. The tech comes to get me in the lobby and we briefly go over my history and the reason for doing the test. When she finds out that I have a feeding j-tube, she asks if I just want to inject the contrast into the tube or drink it. Of course, I opt for the option of using the tube. I don't know why anyone would prefer to drink that awful stuff. (At IMC they make it into a lemonade flavor which makes it tolerable but not at Utah Valley!) She then wants to double check with the radiologist if that will be OK. She comes back a few minutes later and says we are good to go! For the first time since this feeding tube has been placed, I am excited I have it!

 This is the oral contrast mixed with water. Funny that they think all this liquid will fit into my "stomach".

Using the tube to inject the contrast!

I spend the next hour and a half injecting all of this liquid into my tube. They come to get me at 4:40 to do the scan. I get changed into a gown and lay down on the table. The tech starts an IV as well to inject the IV contrast. The scan takes all of 10 minutes. When I am finished the tech takes out the IV and I am free to change and then go. 

Now the waiting part begins. I will wait to hear from Dr. Frech for the results. I know the routine. An email letter if all is well, a phone call if something is wrong. 

2 Month Post Op with Dr. Frech

I am officially 7 weeks post op since the second feeding tube was placed. I am scheduled to see Dr. Frech at his new office in Cottonwood Heights. I check in and am taken back to a room. My official weight at this appointment is 127 lbs. I have now gained 7 pounds since we have started counting! Holy Hannah! Now I only have to gain 13 more pounds and maintain it. It is really hard to watch the scale continue to go up, but I do know this is what needs to happen. Dr. Frech is very excited that up until 2 weeks ago I have been pretty much pain free! (I have pain in my right side again but it is so minimal I leave this info out). He still wants me to work on my oral calorie intake as I am only eating about 1,000 calories a day. He is still not too excited that a lot of foods make me sick  (like chicken breast and bread) but I think that’s just the way my body handles that type of food now.

However the latest and greatest is a new pain in my abdomen on my left side. It is an awful pain that is aggravated by breathing or changing any elevation. So if I am sitting down and then stand up the pain is so intense I feel like I could fall to the ground in agony. Walking up the stairs is a huge task which I try to avoid as much as possible. My pain is always worse as the day goes on. I feel it in the morning but it is not as bad. Dr. Frech is very concerned about this and after listening to my lungs and feeling my abdomen he decides to order another CT scan. He thinks it may either be scar tissue or a hernia pushing on something and causing the pain. He does not feel that the pain is related to the tube being there since the area around the tube is not tender. I am also to lay off taking narcotics and he writes a prescription for Tramadol to take during the day so that I can still function. The liver labs and kidney labs are also ordered to be repeated.

My next scheduled appointment will be after I see Dr. Rasmussen in August. He will contact me with the results of the CT scan and lab work if there is anything to be concerned about.

Feeding Tube Blowouts

 I get to experience what I like to now call my first feeding tube blowout. I wake up in the middle of the night soaking wet. I panic at first thinking that the tube has completely come out. I turn the light on and find out that the feeding tube has not come out of my stomach but has disconnected from the tubing that is connected to the machine that pumps the food. So in this process of becoming disconnected, the tube feeds have continued to run all over my bed and my actual tube has leaked intestinal contents all over me as well. Talk about disgusting.

So I have to get all re-connected and change all my bedding in the middle of the night. Not a pleasant experience. Not only does this happen once, but a few nights later it happens again! Same exact sequence of events. Now I use tape every night to secure the connection so it doesn’t happen again…hopefully!

Dr. Rasmussen 5 Week Follow Up

I see Dr. Rasmussen for my next follow up approximately 5 weeks since the second surgery. Things are overall going well. Here some of the positive from this visit:

• ·         I have officially gained 5 pounds…only 15 more to go!! Yahoo!!
• ·         I have “graduated” to 2 month follow up appointments instead of one month follow ups.
• ·         I have no more physical restrictions or weight lifting restrictions; I am to just ease back into doing things again.
• ·         I can go swimming and rides the rides at an amusement park now (Yes, the small things make me happy!)

We are now watching for the tube to either lose function or fall out. It’s not a matter of if but when. Dr. Rasmussen says that the tube will either clog and we won’t be able to unclog it, or completely fall out. If the tube completely falls out I am to shove it back into the hole to keep it open until they can get me into Radiology to have the tube replaced. This will have to happen in less than 24 hours because the hole will try and close itself off which can open up a whole new can of worms. When they replace the tube, this can just be done in Radiology. It will be a different tube that has a balloon on the end that will keep it in place inside the intestines and not require stitches like the current one I have. This hopefully will be easy when this happens.

Dr. Rasmussen seems really bummed that my pain is back (as am I). However, it is still tolerable on a day to day basis. Right now we are just going with the notion that it will stay this way and not get any worse. I can live with a little bit of pain every day.

At this point, I know that I will never function at 100% again at that’s something I have to learn to accept and learn how to best deal with it. Each day is a new day and brings its own challenges but I also try and learn new things about me every day. I learn my limitations very quickly and am just trying to learn and adjust to what my “new normal” will be.

My next appointment with Dr. Rasmussen will be in 2 ½ months. I see Dr. Frech in two weeks. 

One-Month Update

It has been about 4 weeks since the second feeding tube was placed. I have officially gained 3 pounds! I really thought that the weight would come on sooner and wouldn’t take this long. Apparently, it is going to take the 3-4 months to gain all this weight back!

Things are going well. I overall feel pretty good. Unfortunately, the pain in my right side is back. However, this is something I am going to have to learn to live with because at this point, I don’t think I could mentally or emotionally handle having surgery again. I am able to eat a lot more during the day. On a good food day, I can consume about 900-1000 calories!  I am still incredibly sore and can’t handle sitting down for too long. My abdomen feels better when I am up and moving around or lying flat on my back. I still am on weight lifting restrictions so I feel pretty helpless around the house and have to rely on others to lift things for me.

I still have days where I feel super sick to my stomach and feel like I can’t pull myself out of bed. There are still days where my pain is a 6 or 7. There are days when I become super annoyed that I have to hook myself up to a bag for nutrition and that it has to run for 10-12 hours. I get upset when I add up how much money I have spent on medical/doctor bills but am thankful that I have health insurance and a job that allows me to pay them. I hope that I can go on a vacation when all of this is over and spend my money on something fun! But I push through all of this and keep living my life.  I try and not let these circumstances control my life but I try to control them and the symptoms. I am still alive and try to remember that this is just a blurp on my life map and not a terminal illness. I am thankful every day that I have Doctors that care about me and so many friends and family that give me strength to keep fighting and to keep living!

I see Dr. Rasmussen in two weeks and Dr. Frech in 4 weeks and am confident that things will continue to move in the right direction! 

Dr. Frech Month Follow-Up

 I see Dr. Frech about a month after I had the first surgery. He had not heard from Dr. Rasmussen’s office about both surgeries so I tried my best to explain to him what happened and what was found/done. He was in shock that the simplest of all my procedures turned out to be more complex and required a second surgery. He was pleased that Dr. Rasmussen was able to find something mechanically wrong to explain my pain.

We will continue moving forward with trying to gain weight. At this appointment, my BMI is a 19. He wants my BMI to be a 24 which would require me gaining a lot more weight than we had previously had discussed. The plan is now to gain at least 20 pounds which would put my BMI at a 22 which he would be OK with. He is thinking that it will take at least 3-4 months to gain the weight. Once the weight has been gained, we will stop the tube feeds and see if I can maintain my weight for 1-2 months. If after the 1-2 months, my weight has stabilized, then he will give the OK to remove the tube. He doesn't want to prematurely pull the tube and then I start losing weight again. He says the tube that I have now should last about 3 months so hopefully I can gain the weight in 3 months and not have to worry about replacing the tube.

He wants to see me every 4-6 weeks and monitor my pain and weight. I am to continue taking all my vitamins and add the probiotic back in to the mix. I will see Dr. Frech again in the middle of June unless I have any other issues. 

Dr. Rasmussen-1 Week Post-Op

I see Dr. Rasmussen a week after being discharged from the hospital. Things seem to be going well at this point. I am incredibly sore from the incision and where the feeding tube comes out of my abdomen.  I am overall eating pretty well at this point. My weight is down a couple of pounds from my pre-op visit but I didn't eat for a week in the hospital and I threw up everything else. The pain in my upper right quadrant has seemed to mostly disappear. I have twinges every now and then but nothing too alarming at this point. We discuss how much I should be eating and he does not want me to count calories yet. I need to put the weight back on but I want to do it in a healthy manner. I don’t want to eat high calorie/fatty/sugary foods to put the weight back on. We discuss different ways that I can do this. I will continue increasing the tube feeds until I reach the 1200 calorie mark. I am not to lift anything over 10 pounds for at least another month or do any hard strenuous form of activity.  

I will have to have the stitches replaced around the tube and the feeding tube possibly replaced depending on how long we will be using the tube. This can be done in Radiology and won’t require more surgery. My intestines can also be left attached to the abdominal wall; I just run a higher risk of having a bowel obstruction but no more of a risk than all of the other surgery that was done. Dr. Rasmussen seems pleased with my progress at this point and I will see him again in a month. 

Emergency Surgery

I spend the next 24 hours on clear liquids and things seem to be going well. The following day is Thursday and I still remember being in such a dazed stupor. Lots of people come to see me but I don’t remember much of anything. I am started on full liquids today and the tube feeds begin and things start to not go so well. I feel nauseous with everything I put in my mouth and every little movement I make. I keep trying to walk and eat just thinking it is the effects of having surgery. I don’t remember the separation of days from this point on. All I remember for the next two days is excruciating pain and vomiting. Luckily for me, Dr. Rasmussen is on call for the weekend and I am relieved. 

At some point, the tube feeds come to a halt and I am no longer allowed to eat or drink. Dr. Rasmussen comes to see me Sunday morning and orders a CT scan. I have to drink the contrast for the CT scan which seems like a near impossible task when all you’re doing is vomiting. The CT scan is done later that morning. I also get moved into a bigger room since my nurse says it looks like I will be here longer than expected. I wait all day for Dr. Rasmussen to come back. The nurse pages him and she comes back and lets me know that he will be by later to talk about the scan. I wait and wait and finally in the evening have a slight melt down just as he comes into my room. He lets me know the details of the scan, none of which I remember. He says we are going to surgery again.

Everything happens very quickly from this point on. I am back in the OR within the half hour and meeting the whole new staff. I am given versed a lot sooner this time around so I remember very little. The last thing I remember is sliding over onto the OR table and freaking out that I am going to throw up and aspirate in surgery.

I wake up in PACU to another familiar face and don’t remember being in too much pain this time around. I am wheeled up to my room and it’s around 10:30 pm. The surgery was about 3 hours. I spend the rest of the night resting comfortably.

 Here is the incision from the second operation and new placement of feeding tube!

Shows a few more of the small incisions that were made!

The next morning Dr. Rasmussen comes to see me again and we talk about what he did in the surgery. I had some sort of small bowel obstruction/intestinal twist that wasn't allowing anything through. He had to pull the tube and replace it with a new one but higher up in the intestines. He also pulled the intestines to the abdominal wall and stitched them in place so they can’t move or do the same thing again. We are both hoping that this one does the trick. I spend the rest of the day feeling pretty good and also not eating or drinking.

The next morning is Tuesday. I have been in the hospital for 7 days. I was only supposed to be there for 2. I am going crazy and don’t know if I can make it many more days. When Dr. Rasmussen comes in the morning I tell him that he has got to bust me out of the hospital. He laughs at me but I am being totally serious. He says we will first try to introduce clear liquids. If that goes well, we will start the tube feed and then add a full liquid in. If all of that goes well, I can go home in the afternoon. He seems very reluctant to let me go home and that any of this is even going to happen but at this point I am very determined. I do everything he wants including having another IV infusion round of magnesium and potassium. I struggle a little with eating but am assuming with time it will get better. I ask the nurse to call Dr. Rasmussen to see if I can get discharged. The nurse calls him around 4 in the afternoon and I get to go home!

I am to spend the next week recovering and increasing the tube feeds daily until my follow up appointments. I feel like I have been run over by a train and am mortified by my new scars but am happy that I am still alive and am improving daily. I am grateful for Dr. Rasmussen and feel like I owe him my life. My family jokes that they got to see him so much in the past week, he is now part of the family! Now to gain my 20 pounds!!

This is my cute niece, she came to see me early on!