Surgery Round 3

I meet with Dr. Rasmussen to talk about what the surgical options are. He agrees with Dr. Frech and decides to place the feeding tube directly into my stomach and through the abdominal wall. He briefly explains how this will happen and all the risks related with this surgery. Both Dr. Frech and Dr. Rasmussen are anticipating that the feeding tube will stay in place for approximately 3 months.  The plan will be to use it for 2 months and then for the third month see if I can maintain my weight and caloric intake. Once that has happened, Dr. R says the tube will become brittle and can either fall out or be pulled out (no surgery required). He also decides that doing an EGD while I am out to is the best option to see if there is some way to repair the intestine by the liver. He is hoping to feed the intestine over the scope and find the dilated portion of the intestine and fix it. He wants to try it this way before he goes over to that area and cuts. He is leaning more towards the idea of some hernia or narrowing in the intestine that is causing the distention rather than it has folded over and is kinked. He explains that he may need to do the surgery open as well just depending on how the anticipated scope repair goes.

I will be in the hospital for a minimum of two days. The newly placed feeding tube will not be used for the first 24 hours. Once the 24 hours have passed, they will start the tube feedings and monitor the tube to make sure nothing is leaking. Once the tube is working well and the pain is under control, I will be allowed to go home.

The surgery is scheduled. I feel really good about it this time. Dr. Rasmussen also seems more confident with this procedure which is helping me a lot. Third time is the charm, right?

MRI Results and Options

I have the MRI done at IMC on a Monday morning. The whole scan takes about 30 minutes. The tech informs me that the Dr.’s office will let me know the results.

I wait for a few days and get another phone call from Dr. Frech on Wednesday afternoon. I know personal phone calls from Dr.’s at this point mean no good news but at the same time I feel some sort of relief that maybe the scan showed something to explain my pain and that I wasn't turning into a lortab junkie. I was right.

He informs me that the scan showed that my liver and biliary ducts are all normal. There are no defects to be found, which officially rules out the Sphincter of Oddi dysfunction. He then tells me that where I had my stomach removed (the duodenum part over by my liver) is distended (swelling). He says it is behaving like a kinked hose and not allowing the bile to drain into my intestines. He then proceeds to tell me that my colon is full of stool. A lot of stool. This concerns him tremendously because of my previous bowel habits. He says it isn't normal to go from having diarrhea every day to having a colon full of stool and only having a bowel movement maybe once a week (sorry for those who don’t care to know this). He said that all these factors explain my pain. Vindication!

Options: He goes over a couple of things that we can do right now. He first refills my pain medicine (thankfully). There are only 2 options at this point. The first being they can go in with a scope and try to dilate the kink open. He doesn't think that this will work though because of how complex my newly arranged anatomy is. Also, the scope may not be long enough to get in there and actually do something. The second option is to have surgery again. Dr. Rasmussen will have to go in and revise that area (not too sure on how this will all work yet). Dr. Frech wants to first talk to Dr. R before proceeding with any treatment first. He says since Dr. R was the one who did the surgery, he should have a say in how it gets fixed. Unfortunately for me, Dr. R is out of town for Spring Break so I have to wait until next week before they talk and any decision can be made. Dr. Frech also doesn't want the feeding tube pulled yet. If we proceed with surgery (which sounds like Dr. Frech is leaning towards) the stomach feeding tube can be placed at the same time the revision is done. He also completely takes me off welchol and adds MiraLax to the mix.

I have an appointment with Dr. Rasmussen next week. I am hoping that both Dr.’s will have talked by then and a decision can be made. I want to proceed fairly rapidly at this point. I have a lot going on this summer and I am SO over the sick phase!! 

I am Human

I have spent the last 10 months with most everyone around me knowing that I am sick. The tube coming out of my nose doesn't really help that situation. Some common responses include,

• ·         “you are too young”
• ·         “you are so brave”
• ·          “you were given this trial because you are strong enough to deal with it”

The last statement for some reason has always stuck with me and as of late has started to really bother me. I don’t believe that God in Heaven is picking and choosing people who are going to be sick or have to battle sickness/illness in this life. I don’t believe that I am stronger or braver than the next person or that I am more suited or designed to deal with an illness.

I do believe in God and his ability to guide us through illness or whatever horrible situation some people find themselves in. I do believe that I am special but I also have only done what any other person would hopefully do in my situation. I have smiled through the pain and tears. I have scraped myself up off the floor and somehow each day, manages to put one foot in front of the other. I have found a way to keep moving but more importantly to keep living. These facts don’t make me special or stronger than anyone else, they make me human!

Life will find a way to knock each one of us down. For me, that is losing organs and continued pain and illness. But for others it may be something else or a combination of hardships. But we all keep going. You would keep living. And that’s what makes us all strong enough for whatever life decides to hand us.

Here are some quotes that have however helped me continue to move forward. 

This one always makes me laugh because it is so the truth!!

Dr. Frech and Liver Plans

I go to my follow up appointment with Dr. Frech. We decide that the best route at this point is to do the MRI/MRCP of my liver to make sure that the lab issues are just related to the weight loss and that there isn't something mechanically wrong. He is worried about my pain. The pain seems to be getting worse and I now take Lortab at night to just be able to sleep.

He also says that it would be a bad idea to take the feeding tube out any time soon. My weight has sort of stabilized but I have also only gained a pound after being on the tube feeds for 4 weeks. The nasal feeding tubes are only designed to stay in for about 30 days. That being said, he suggests that we remove the nasal feeding tube and surgically insert the feeding tube directly into my stomach. These are designed for more long term use. He also wants this done by a trauma surgeon at IMC. I disagree. At this point, the only surgeon who will operate on me again is Dr. Rasmussen. It makes more sense to have someone who has already arranged my insides to do it.

Next plan: MRI/MRCP is scheduled. Dr. Frech will contact me with the results. I have an appointment scheduled with Dr. Rasmussen to go over the feeding tube placement. I guess we will go from here.