CF Awareness Month: All things gut related

The gut (belly/bowel/intestines) are greatly affected by CF.  There are a lot of issues that can come up. Like I have said before, not all CFers have the same symptoms and problems, nor do they have them at the same rate/severity. I am going to add some pictures to help describe all of these gut related this.  The pictures will help describe some of the different aspects of these areas that are affected.  I have included information about feeding tubes because maintaining weight is something many pancreatic insufficient CFers deal with.  We have to keep the weight on so that we can fight infections. GERD/acid reflux is very common in CF.  With all of the nutritional and digestive issues, it is a given.  Acid reflux can be a factor in lung infections.  Acid can reflux up into the airways and lungs causing infection.  There is a surgery that can “fix” the acid reflux problem.  As you know, nothing is a sure bet so the surgery may not always work for everyone.  The surgery is called the Nissen Fundoplication, or what I like to call “the acid reflux fixer upper.”  I had the Nissen Fundo in November 2012 (2 days before Thanksgiving).  During that surgery they detach your spleen from your stomach, then wrap a top portion of your stomach around the bottom of your esophagus to make a tight sphincter so that the acid can’t get back up in the esophagus.  This makes your stomach smaller thus making it hard to eat larger amounts.  It is common to loose weight with this surgery due to the diet restrictions.  I lost somewhere between 15-20 pounds.  It changes your eating habits a lot.

Right after surgery, when I was able to eat solid food, I ate a few teaspoons full of pudding and was stuffed.  I have to be very mindful of how much I eat in order to keep weight on.  I am able to eat much more than I was right after surgery but nowhere near what I could before surgery.  I love to eat so it is frustrating when I want to keep eating and I can’t. I had what is called a post op ileus which basically my bowel decided it didn’t want to work.  When this happens your bowel gets lazy and won’t move gas or feces through.  I have attached a picture of my abdominal x-ray showing how full of gas I was.  I looked like I was 10 months pregnant.  It was so painful.  I had to do enemas, suppositories, drink Miralax,  and anything else they could think of to get my bowel to wake up.  When your bowel is lazy like that you can get an obstruction which means there is feces stuck and not going anywhere.  If it stays too long surgical intervention is necessary.  It can kill sections of the bowel.  It was not a fun process at all but I don’t have any problems with acid reflux anymore!  All of my testing showed that my acid was refluxing up pretty bad.  My doctor’s hope was that by me having the Nissen I would decrease the frequency of lung exacerbations.  I’m not convinced that it did any good as of yet but then again I fought my doctor on having it because I knew the recovery was going to be hard.  My husband says that my cough sounds different so I guess it did some good besides give me 6 extra scars on my belly and a crappy appetite.


day16 mickeyday16 pegday19 diet day19 digestionday19 malasorbitionday19 pancreatic insuff day23 GERDday27 DIOS  day26 rectal prolaps

Gas bubbles after Nissen Fundo surgery (post op ileus)

Gas bubbles after Nissen Fundo surgery (post op ileus)

nissen nissen1

(click on any photo to enlarge)


Doesn’t CF sound like a whole lot of fun!?

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