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! 

Surgery Day...Third time is the charm??

Surgery day is here. I check into the surgery department and the prep for surgery begins. The typical sequence of events takes place. I get changed into a gown, placed in a bed, nurse comes in, IV started, history gone over, and the wait begins. This time I don’t have wait too long, an orderly comes to get me at 7:00 am and I say my goodbyes. 

I am taken back into the holding area and wait for a few more minutes.. The Anesthesiologist is the first to come in and we go over all the little details related to that. Dr. Rasmussen comes in next and we go over all last minute details/questions. Once he is gone, the OR nurse comes in and cracks a few jokes. Thankfully, this is all the same staff from my surgery in December, so at this point, it is the familiar faces I am extremely grateful for. He puts my cute hair hat on and away we go down the hall. To OR room #4. This is has become a familiar room to me. I am wheeled into the room and some of the staff introduces themselves and then I move over to the OR table. The Anesthesiologist and the nurse begin their routine. The BP cuff goes on, the next is the heart monitor stickers and I am covered up. Then I get the good juice and the world goes black.

I wake up in the PACU room and I remember fighting the tube. This is a first for me. They take it out and I remember being in a lot pain. I am assuming I get doped up because the next time I wake up is upstairs in a tiny room. Everything with the surgery went well. The feeding  jejuonostomy tube was placed. We will wait for 24 hours before starting any feedings. Apparently I also had some sort of hernia/scar tissue issue in my upper right quadrant. This caused my intestines to attach themselves to the biliary tract which was causing my pain. Dr. Rasmussen was able to release this and clean up the scar tissue hopefully also resolving my pain. The plan is to still go home on Friday if the tube feeds go well. Those will be started in 24 hours.

(Here is a smattering of a few of the floral arrangements and balloons my amazing family and friends brought to me. I only took pictures in the beginning before things started going downhill)

 Dr. Rasmussen loved my pony balloon!

 Of course my sisters spoil me rotten!

 The beautiful roses from my parents!

Flowers from new and old co-workers!