Good news and bad news.

Hey friends,

We got the CT scan results yesterday!  The images showed that I had something called Buried Bumper Syndrome (a rare complication with feeding tubes)....basically, the balloon on the j-tube (which is inflated with 1 ml of water to hold it in place) got stuck in my abdominal muscle.. :-O  No wonder I am dealing with pain and spasms!  So my GI surgeon's office got me in that afternoon.  I've been having appointments every day....I'm tired to say the least.  My surgeon pulled the tube out and replaced it with a temporary balloon-less tube to let the area heal.  And she'll later switch it to a different size in 3 weeks.  We're still not sure if this will resolve all issues as my GI specialist said there may be more than one thing going on, including the motility issue.  But at least we can take care of this specific problem now.

Because I'm losing weight again, my GI dr. is going ahead and starting me on an elemental tube feeds formula which is more broken down and usually easier for patients with dysmotility to tolerate.  I see him again in 12 days!

Today I had urodynamic testing (super thankful that's out of the way!), and the results aren't good..  My nervous system is not working well at all, and she thinks this is from a cerebellum issue and/or a spinal cord problem (which my mitochondrial specialist suspects as well when I saw him back in June).  My specific bladder issue is hard to treat, but she is starting me on a medication....sometimes it works and sometimes it doesn't.  If it doesn't help, she'll re-evaluate and go up the ladder from least invasive to invasive.

Now for some good news---more of my muscle was found which means the mitochondrial DNA testing can be started as soon as my insurance approves it! :)  If all that goes well, I have a tentative appointment with my mito specialist in San Diego on January 20th!

The first week of December, I have GI, an appt. with my pain dr.'s colleague, and physical therapy.  So I will be enjoying next week off! :)

Have a blessed Thanksgiving next week!

Love,
Kerissa

More tests.

Hi friends,

Some of you on facebook know how I had to go to the ER yet again last week for a lot of issues....I was also admitted overnight in the ED observation unit for IV hydration and pain control.

It's been crazy rough and hectic as I've had to keep going back and force between GI and Surgery to figure out what's going on---not feeling well and still dealing with intestinal spasms, abdominal pain, and intolerance of j-tube feeds (see previous posts for more info).  Well, I saw my main GI dr. today, and it was a productive appointment. :)  He's so awesome like always.  He ordered a stat CT enterography scan which will be done tomorrow at noon!  Please pray that this will give clear answers or at least help narrow things down..  He agrees that something is going on....I'm a puzzle to him..  I have to drink a lot of contrast for the scan...hopefully it's not too unpleasant!

I also have extensive urodynamics testing this Thursday which will be another long day.  After that, I don't have any more doctors appointments, Lord willing, all next week! :)  That will be a nice break before December which is filled with a lot of follow-ups.

Thank you for checking in!

Love,
Kerissa

Rough.

Oh what a week it's been..  Thankful for my Lord and Savior who is always there for me in these challenging days.

A couple weeks ago, I started dealing with bad spasms in my small intestine and not being able to tolerate j-tube feeds---this is still going on today.  The spasms cause my mic-key button to pop out partly over and over again.  I haven't been able to eat solid food without a lot of pain, so I'm currently on a soft food diet.  Last week, I also started experiencing dizziness every single day and night...it was horrible and I just felt unwell.  Whenever I had doctor appointments, my blood pressure was checked each time and the numbers kept getting lower (my lowest recording was 80/62 and I'm usually 113/80ish).  No wonder I didn't feel well!

Nothing was resolving, and last week, both my GI surgeon and GI specialist were out of town.  My GI surgeon's resident squeezed me in---he thought maybe the "balloon" on the j-tube had too much water in it, but there was only 1 ml in it.  So he wasn't sure what was going on.

This past Monday, the dizziness bothered me so much and I was dehydrated.  Two nurses at both GI clinics said I should go to the ER to get IV fluids and labs done.  Also, when I finally heard back from my GI dr., he wanted me to get an x-ray with contrast dye to check tube placement.  So I spent 9 hours in the ER Monday evening.  They gave me a whole liter of IV fluids and pain medication, and that helped a lot. :)  The ER docs consulted with the blue surgery resident team for the spasms/tube issue.  After I had the x-ray, the surgery residents studied the images and came to the conclusion that the j-tube was in the right spot and had not migrated.  They believe that the dizziness was from dehydration and not getting enough nutrition.  Regarding the spasms issue, they think it's from small intestinal dysmotility---not good news.  But they're leaving this up to my GI specialist to figure out.  We were able to connect with him, and he is not entirely sure---it could be dysmotility or an ulcer near the feeding tube..  He's starting me on an anti-spasmodic to see if that will help me tolerate solid food and tube feeds.  He also mentioned I may need to once again switch formulas.  I have a follow-up with him in 2 weeks.  I'm also waiting to hear from my GI surgeon if I need to have my mic-key button changed to a different size to see if that could help resolve some of these issues.

Yesterday, I said goodbye to my pain dr. who is leaving OHSU to soon start working at UWMC in December.  I wasn't expecting to cry because I did enough of that when he broke the news back in September.  Plus, this isn't goodbye forever because I'll be seeing him up there eventually.  But he got teary!  So me and my mom did, too. :'(  He kissed me on the cheek and hugged me tight.  We've been best buddies. :'(

My new favorite picture which was taken last month.  He's so sweet.

Today, I slept until 3 pm!  17 whole hours.  I've been so exhausted.  Thankful that I don't have any more appointments for the week. :)

Thank you for reading and praying,

kerissa