Patiently Waiting - Update

It's the day after Christmas and though I was able to enjoy time with family, open gifts next to the tree, and sip delicious hot ginger lemongrass tea that I opened the night before (with a fancy new tea diffuser!), reality is setting back in.

In the previous post I opened up about the challenges I've had recently with the feeding tube and the choice to have it removed.  I was confident things would go well.  After all, I CAN eat a variety of nutritious foods and have helped others do the same!  Well, it seems as though it is not enough to sustain me. I've always been on the skinny side with a super metabolism my friends would agree was highly unfair.  Back then I could eat whatever I wanted all day long and not gain a pound.  The difference...my weight was healthy, I was active and felt good.

In the last few weeks the pounds have continued to drop almost daily, leaving me at my lowest weight yet.  In fact, it's hard to believe because I can still walk around and function, eat mini meals throughout the day and think well enough to play games, read and write!  However, I don't feel "normal," with a constant lightheaded feeling, hunger despite just eating, completely full, and easily fatigued.  We met with the doctor in Seattle last week who strongly advised getting a tube back in soon.  Unless I can get over 2000 calories a day there is no other option, and gaining weight at this stage is priority.

I was given the choice to either get the same type of tube as before, a G-J which is done endoscopically but does go through the stomach OR a J-tube which would be placed surgically (laparoscopic) by-passing stomach completely.  A few doctors I've spoken with are leaning towards the J.
At this time, I'm patiently waiting for my local docs (PCP and GI) to call me back with their thoughts and a referral.  This is all quite overwhelming but continuing deep breathing while asking for what is best and meant to be to gracefully fall into place.

For more information about enteral feeding options, check out the ThriveRX website.

For obvious reasons, health counseling is not something I'm focusing on right now but I do hope to provide this in the future again when my own health has improved.  Until then, I will continue to post updates and share thoughts, inspiration and support at JourneywithGP  FB page.

If I can do this, you can do this and vice versa!  Lets stay strong together and continue manifesting a healthy and happy future for us all.

Troubles Arise, Goodbye J-Tube

"The tube seems to have coiled up in your stomach and is likely the cause of your pain.  There are two options: 1) Come down to the hospital in Seattle and have it fixed/replaced, or 2) Have it removed, which is simple and can be done where you live.  A decision should be made soon."

The words I had feared suddenly came to life and bounced around my head, reverberating throughout my body.  Strange, because somehow, simultaneously I felt relieved.  I wasn't crazy!

After finally healing from SIBO I was finally beginning to feel "normal" again, for living with GP anyways.  However, about a month ago I started experiencing some pain around the tube site and under my right rib cage.  At first, it seemed to be a flare so I just tried resting more, hoping it would pass.  At that point I wasn't using the tube nightly anymore but as the days passed and pain increased I began using it more.  Instead the pain intensified and by last week I was doubled over, at the doctor for the third time, insisting something was not right.

First, there was the immediate problem at hand, a small infection at the tube sight.  With a big sigh of disappointment, I stubbornly agreed to start on antibiotics.  Next he ordered an abdominal CT scan but because it was late on Friday, it would have to wait until the following week.  I spent the weekend resting and distracting myself with puppy walks on the beach, reading, movies and LOTS of deep breathing.  When Monday finally rolled around I couldn't wait to get in and get scanned.

Early evening we found out the news with a recommendation to call the GI doctor in Seattle, who had originally placed the tube, first thing in the morning.  My initial thought was I'm not crazy!  Then, I have to survive another night like this?  Unfortunately, I did not get much sleep but did enjoy some 3 a.m. tea and a good novel to relax and distract with.  When I spoke with Dr. Ko from UW she gave me the options of removing or replacing the j-tube.  Her recommendation, concerned about the recent weight loss from pain, was to replace it for a few months.  My mother, caring and concerned, wanted the same.  My head spinning, I let her know I needed some time to discuss this with my husband and would call back.  This was not how it was supposed to happen.