Post op week 11 – 12mm and 8 more to go!

I missed doing my usual weekly Friday post again! This is a good thing though. I noticed it’s a trend among most CDH1 bloggers around this time and I now have a better understanding of why this may occur.

I have been busy living a new normal life! Yahoo! Now that my restrictions have been lifted and I can do whatever I’m able to do.  At this point, I feel it’s safe to say now that I am now starting to figure out my new normal.

Last week I returned to the big city to have another dilation.  I have had some questions on what exactly is being done and here is a picture to help further understanding.

It is basically an endoscopy with an additional step.  First, an IV line is inserted where the anesthetic will be administered.  Then I am brought into a room where I am attached to a blood pressure monitor as well as an O2 saturation monitor.  A freezing agent is sprayed into my mouth twice to numb my throat and then I’m put out.  The physician always apologizes for the taste of the spray because it IS disgusting.  This time I pretended I was drinking a delicious glass of orange juice and it wasn’t as bad.  During this time, the surgeon looks at the stricture with the endoscope and determines how much to dilate.  Next, a balloon is inserted and the stricture is stretched.  The specialist has to be careful not to dilate too much because this could result in perforation and we all know I don’t want that!  When I wake up, I am in a recovery room and I wait there until the physician has had a chance to debrief me on what occurred while I was asleep.  The nurses remove the IV line and I receive some nice juice.  The actual procedure takes 30 minutes but I am usually there for two hours once they have put me under because it takes about 20 minutes to prep before the procedure (IV line, take history, etc).

I mentioned last post that I would be going with Brandon but I actually ended up going with my brother in law.  This is the worst part about the whole procedure because I need an escort for the procedure and they could end up waiting anywhere between 2-5 hours depending if the clinic is running on time or not.  I can’t help but feel bad for whoever is waiting with me.  Thankfully, this time the two patients booked before me did not show up.  I was scheduled for 9am and I went in promptly at 9am and we were out of there by 11am.  The specialist was able to dilate my stricture from 8mm to 12mm (note: last time they went from ‘pin hole’ to 10mm).  I asked how wide it should be and he said, “20mm”.  So I’m over halfway there!  I figure one to two more times should do it and then I am going to will it to stay open.  Once I’m fully dilated, I’m assuming I also will no longer need to follow up with my surgeon and all my trips to the big city for medical appointments will be over for a while.  This will be nice.

The first time I had the dilation, I didn’t feel any after effects but this time I had some discomfort.  I would feel fine and then all of a sudden I would feel this pulling deep inside my body right where the stretch occurred and a split second of nausea.  I think my esophagus was rebelling.  The frequency of these spasms decreased and by Thursday I was fine.

Tuesday was also our two year wedding anniversary and Brandon took me out to Quatrefoil. This is a well known fine French dining restaurant located in our little town.  People come from the big city down to our little town to this restaurant.  I was happy to have just had the dilation because I was able to eat!  I ordered a soup for my meal and had a bite of every course that Brandon ordered.  I wish I had taken photos of our meals because it was presented beautifully.  Blogging fail.  Since only 50% of us had a stomach, our bill was only 50% of what it could have been.  Another win for Stomachless Rachel.

In terms of activity,  I am able to do all of my daily activities of living without much difficulty.  Sometimes I will feel some incisional discomfort after an activity, but I figure I’m just breaking more scarred tissue because it doesn’t last long and I always seem to feel better as the day goes on.  If I sit for too long, I always have pulling immediately after rising and need to stretch out a little before the pulling subsides.  I tried to jog up my driveway one day and was able to do it but it wasn’t pretty.  Tending to our vegetable garden has been a great rehabilitation activity for me as it requires about fifteen minutes of bending, lifting, and reaching to harvest all our veggies.  Speaking of rehabilitation, I have other exciting news.

Our daily harvest

Our daily harvest

I will be returning to work beginning of September!!  It has been a long three months but I am really looking forward to heading back.  This is the last piece to my new normal life.  This means, I also need to start to do some formal rehab to build up my endurance so I am more prepared for the physical demands of my job.  I am concerned about exercising and burning calories but I know that I need to get back into shape to avoid injury in the future.  I currently sit at 108lbs.  My weight continues to fluctuate.

I have been fortunate to have not experienced the full dumping syndrome yet.  If I eat the wrong food the first symptom I experience is excessive thirst.  This is followed by the furnace, then fatigue and sometimes nausea.  Luckily it all wears off within 20-30 minutes.  For some reason, if I move around more during this time, it subsides quicker which doesn’t make any physiological sense but you do what you’ve got to do.  If I eat too much, I feel a lot of discomfort in my intestines which I attribute to stretching.  In this case, I use my hand to rub over my ‘new stomach’ and I think it helps with gastrointestinal motility.

I have been careful about my sugar intake and have been slowly gaining more courage to try more sweet treats.  This week I started eating a lindt dark chocolate bar and am able to tolerate one square at a time.  I am still limiting my carb intake but I have started to re-introduce bread purchased at our local farmers market.  I look for the bread with the most ‘stuff’  in it and it has been going well.  Last week I purchased a whole grain rye bread with light sourdough and this week a seven grain sourdough loaf.  I try incorporate something with protein on top of the bread (almond butter, cheese, liverwurst). If I start to carb crash after, I just eat some fruit and I’m back in the game.

I haven’t tried alcohol yet but I’m thinking I will soon.  Recently, I drank a small black iced coffee and felt pretty loopy fifteen minutes after finishing it.  I wasn’t a big coffee or alcohol consumer before surgery but I did enjoy them once and a while.  I can only imagine what the alcohol will bring to the table.  My friends are also looking forward to it.

So I’m approaching the three month mark.  Each month is easier than the one before.  At this end of this month I will having another dilation.  Sometime this month, I need to go get my routine blood work and over the next three weeks I am going to work on getting myself back into shape.  I do miss my life with a stomach but I am learning a new life without a stomach and each day brings a new adventure.



One thought on “Post op week 11 – 12mm and 8 more to go!

  1. Pingback: Whooaaa We’re halfway there – 6 Month post op | Cytosine Deleted – Life with the CDH1 genetic mutation

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