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.