Friday, December 7, 2012

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.

As I curled up on T's couch in his office, knowing what I wanted to do but scared to commit, he gently went over the options with me, obviously very concerned and nervous himself.  We both agreed it was time to have it removed, intuitively it just felt right.  So, I called Dr. Ko as well as my local doctor to get the referral and had it scheduled for later that afternoon.  Here comes the crazy part...they literally just pull it out!

First, I was surprised the location was at a clinic and not the hospital.  T and I walked into what looked like a normal doctor's office and met with the nurse practitioner who worked in IR, Interventional Radiology, a speciality that places these tubes.  She insisted it would not hurt and only take a matter of seconds.  "You aren't going to give me anything," I gasped, noticing T was just as shocked as myself.  She just sort of laughed and calmly advised us not to worry.  She had me lie on the table in the clothes I  came in (including my shoes) and examined the area.  After removing the tape and protective gauze, I looked over at my husband, who reached out to hold my hand.  Immediately, I knew everything would be okay.  The nurse slowly began to pull it out.  There are no words to describe that feeling.  A little nausea occurred as this long snake of tubing slowly made it's final exit.  A deep breath and Whoa!  No pain, just absolute shock.  I felt liberated, sort of like when our stomachs finally empty after hours of that uncomfotable fullness.

That evening I slept 11 hours and woke up to my first tube free shower.  No tape, no flushing, no cleaning and no protecting.  The hole was already closing and within a week I was told I could swim and soak in a hot tub again.  Life felt good.

The feeling didn't last, as I now had to deal with the next issue at hand.  Since the troubles had begun a few weeks prior, motility problems only worsened.  I'm used to dealing with this and have remedies that always end up working for me when the body doesn't naturally figure it out.  This time was different and I'm not sure if it was a decrease in calories due to pain, the tube misplacement or just the plain stress of these events, but nothing was working.

Coming from someone who works as a health coach, used to guiding others, this is very hard for me to share.  I want nothing more than to have answers and provide hope and inspiration.  I just received my certification from AADP, American Association for Drugless Practitioners and will complete my graduation at IIN in 2 weeks.  That said, self-care must comes first, so I will be spending some time really focusing on getting over this hump.  I'll do my best to update on the blog and continue to post on Facebook when I can.  You have all been a big part of this journey with me and I want to remain a part of yours as we navigate our challenging paths together.

If you get anything from this post, please remember to ALWAYS be your own advocate and listen to what your body is telling you.  Persistence does pay off when it comes to our health and our lives.

With gratitude for everyone in my life (physically and virtually!),


  1. Stephanie I am praying that you recover quickly..YEs one thing I have learned from my GP is be your own advocate!!!

  2. I had a j tube put in about a three mth's ago, and I've been having problems from day 1, the first couple days pain, nausia, bloating. Third day, trying of formula, formula made me even more nausiated along with vomitting up this yellowish liquid. Dr.s said it would take time for my body to get used to, its a slow process. Almost mth later same problem, lost 18 pds. Finally I ask to change the formula. Body sorta of took to fomula but now I have dirreah, heart burn, nausia, stomach rumblings, constantly spitting up thick clots of cold and stomach pain and if that's not enough, I have to constantly stay hooked up to feeder along with worrying about the tube falling out if 1 stitch fall out I was diagnosist with asperation. Tried gtube once it kept falling out, they kept stabbing it back in, finally I told them to take it out. And I went for a year eating normal.finally got asperation in lungs causing pneaumonia in lungs again. So they recommended jtube. Now I'm restricted to my home and sick every day. And to top it off, when I requested gtube out they let me go suffering with acid eating my flesh from gtube for about a ur, until I agreed to jtube. Now why didn't they stop the gtube acid from burning my flesh like that. And now I'm sick everyday. Need reply

    1. Joyce, I'm sorry to hear about your suffering. These tubes can really be a pain for some despite the fact that they are there to help us survive. I no longer have mine as it caused too much trouble and ended up on TPN. This is something you really need to consult with your doctor about and what the best next step for you is. I can say that aloe vera gel helped my skin around the tube when it was leaking and causing skin irritation. A dear friend of mine had all the same issues as you including the aspiration and is much better now after doing some myofascial release treatment, something I am currently doing as well. My latest blog post explains some of this and will have more to report in a few weeks. If you don't have a doctor who understands go and get a 2nd even 3rd opinion with specialists if possible. Wishing you well and don't give up hope, things can get better.