Disabilities My Battles Spinal Cord Injuries Thanking God Trusting God

Chronic SCI Complications but Grace got me!

I sit quietly for about 20 minutes, contemplating the pile of pills in front of me.  An antibiotic, two asthma/allergy pills, diazepam for spasticity, heart rhythm medication, pain pill and the list is longer.  My stomach is going through another spell of “slow emptying”, most likely gastroparesis. I will find out for sure in a few weeks when I see the GI team.  An upper GI recently revealed no ulcers. The Cherry jello I had for supper 5 hours ago is still sitting in my stomach and I feel like I just consumed a huge Thanksgiving dinner.  I’m once again reminded, that the further out from injury, the more complications can occur for us “chronic” SCI people.  Sigh…I finally decide to take them with vanilla pudding.

Having had a spinal cord injury since 2003, I am certainly aware of the immediate effects on the body and what I mean by immediate is year one.  In addition to the effect it had on my legs, I had a neurogenic bladder, neurogenic bowel, spasticity, very occasional bouts of Autonomic Dysreflexia (AD) and the usual list.  I also was aware of the increased risk for further complications but nothing prepared me and nobody told me that when you pass a point, you are considered a chronic spinal cord injured person.  Pandora’s box just flew open!!

A bad several months!

Ok…fast forward almost 3 months. I started this post in November and am finding myself just able to get back to it, now in February of 2019.  Most of the last few months has been a blur.  In October and November, my neurogenic bladder was getting progressively worse and the urethral catheter I had was leaking. Due to my poor nutritional status, my skin was having pretty significant breakdown so my urologist recommended, and I approved the switch to a subra-pubic catheter.  This was done with a quick overnight stay at Mayo Clinic in the middle of November.  That gave a little reprieve from the increasing episodes of Autonomic Dysreflexia caused by the skin breakdown.

The slow gastric emptying I was experiencing gave way to an unintentional drop of about 20 lbs in 2 months and by that time, I was sleeping almost 20 hours a day.  I was seeing a Register Dietician, GI experts, who were ordering and running tests, and was told until we get this turned around or alternative nutrition in me, to consume whatever calories I could, in order to rapidly halt the weight loss.  I was dehydrated and my Autonomic Dysreflexia flared again, sometimes 3-4 times per day.  This necessitates taking a vasodilator to bring it down, adding to my already growing list of very uncomfortable symptoms.   So test confirmed, I had a slowing of my stomach motility along with an increase in gastric acid production.  They already had me on home infusion therapy to keep me hydrated and subsequently, the decision was made to place a feeding tube.

Since I am a 100% Permanent & Total Service connected veteran, and didn’t already have an established GI physician at my current clinic (Mayo Clinic Rochester), I opted to be seen at the VA in Minneapolis. Since my husband is soon approaching retirement age, over the last 3 years, I have begun to slowly transition my care to the VA.  I am blessed to have an awesome VA primary clinic within 15 miles and a major Spinal Cord Injury/Disease hub in Minneapolis. They both offer top notch medical care, in contrast to the many complaints we hear about other VA medical facilities in the country.  I’m glad to see much is being done to improve those falling short and a new transparency seems to be coming over the VA Administration, both medical and non-medical.  I pray this trend continues.

In early January, I had the placement of the PEG/J and officially became a “tubie” as they call it 😂   I opted for the PEG/J because it allows for two tubes, but just one entry point at the skin, via the stomach. So one part of the tube goes into the stomach and another part extends to the jejunum portion of my small intestine.  This is essentially where most nutrients are absorbed. By using this type of tube, I’m able to get the nutrition I so desperately need directly to the best place and can open the port of the gastric tube to drain continually.  This gives some relief for the fullness I was feeling and allowed us to monitor my gastric output which is high.

Adjusting to not eating has been exceptionally easy since food was a huge source of discomfort to me for several months, however the PEG/J transition has not been an easy one. I am apparently sensitive to changes made to feed rate, flush volumes and clamping of the G-tube for very long. Because of this, we have learned to make small changes and we don’t make any changes at night if we can help it.  We do this in an attempt to keep my feeds going at maximal rate while trying to avoid hospitalization. It’s been somewhat of a challenge to minimize the pain on the feeding tube but we recently found that happy spot and it’s much more tolerable. I was getting very large volumes of drainage from the G-portion of the tube prompting the docs to suggest going on a PPI (ie, omeprazole, Prilosec, etc).  At that point the light bulb went on.  After researching my records, we were able to back track to early 2018, when I was weaned off omeprazole due to potential kidney damage.  Since my kidney function is pristine, we obviously put me right back on it after seeing the large gastric volumes I was producing.  Praise God!! Within 5 days, the gastric output was down to none.

It’s been a long haul, but I think I’m finally making some progress. Because it’s so difficult to get up to the VA during the winter months, and excessive snow, I made the decision to also obtain a consult at Mayo Clinic so I have a GI doctor and feeding tube resource close by. When I went to see the specialist, as I suspected the VA was handling things very well and within guidelines. I’ve always gotten very good care from them. There were a few options that were suggested to me by Mayo. One of them was to listen to my body and eat accordingly.  I started with clear liquids and advanced as tolerated to full liquids and beyond.  I generally eat three or four small things a day. One thing I do very well with is cream of potato soup and mashed potatoes.  I’ve even tolerated a simple grilled cheese sandwich with white bread and no crust. This is so encouraging to me. I’m off my IV fluids now and getting enough volume for bladder health through my feeding tube flushes, formula, and additional liquid I’m able to take orally. I’m not sure what the future holds regarding my stomach issues, and I may always have the feeding tube. I am hopeful and prayerful that someday I will be able to do without it. but as always my attitude is positive because I know that no matter what I walk through, the Lord will be with me.

Here it is now at the end of March and I’ve come to the realization that if I ever want this posted, it will need to be a multi-parter lol. So my last update for this post is that God is working miracles in His time and day by day, I see small improvements.  My goal, if it be His will, is to get rid of all my tubes (feeding and suprapubic) by the end of the year.  And if not, I know I will still be okay because I rest in His arms.

I’ll end this post with a video that reflects the joy and hope that comes to me from God.  Without Him, I could not live the life of happiness I am so blessed with. Grace definitely got me ✝️

Music credit to the awesome group MercyMe.

I’ve included the lyrics for those interested.

Grace Got You

Have you ever met those who
Keep humming when the song’s through?
It’s like they’re living life to a whole different tune
And have you ever met those that
Keep hoping when it’s hopeless
It’s like they figured out what the rest haven’t yet
The second when you realize
When you have inside
It’s only just a matter of time ’til you
Sing, so the back row hears you
Glide, ’cause walking just won’t do
Dance, you don’t have to know how to
Ever since, ever since grace got you
Laugh, ’til your whole side’s hurting
Smile like you just got away with something
Why? ‘Cause you just got away with something
Ever since, ever since grace got you
So when you’re standing in the rain again
You might as well be dancing
Why? ‘Cause there ain’t no storm that can change how this ends
So next time when you feel blue
Don’t let that smile leave you
Why? ‘Cause you have every reason just to
Sing, so the back row hears you
Glide, ’cause walking just won’t do
Dance, you don’t have to know how to
Ever since, ever since grace got you
Laugh, ’til your whole side’s hurting
Smile like you just got away with something
Why? ‘Cause you just got away with something
Ever since, ever since grace got you
Ever since, ever since grace got you
Grace got you
Got away with something, bubbling inside of you
Spilling over ’cause your life is full, how incredible
Undeniable, monumental like the Eiffel
Uncontrollable, let the joy flow through, ha ha
Giddy oh, but pretty, pretty please
Let me see your hands in the air with you out your seats
Warm it up, let go, shout it out, celebrate
When you can’t articulate just say Amazing Grace
The second when you realize
When you have inside
It’s only just a matter of (only just a matter of)
It’s only just a matter of time ’til you
Sing, so the back row hears you
Glide, ’cause walking just won’t do
Dance, you don’t have to know how to
Ever since, ever since grace got you
Laugh, ’til your whole side’s hurting
Smile like you just got away with something
Why? ‘Cause you just got away with something
Ever since, ever since grace got you
Yeah yea yea yea yea
Ever since, ever since grace got you
Yeah, yeah, yeah, yeah, yeah
Grace got you
Yeah, yeah, yeah, yeah, yeah
Ever since, ever since Grace got you
Yeah, yeah, yeah, yeah, yeah
Grace got you
Yeah, yeah, yeah, yeah, yeah
Yeah, yeah, yeah, yeah, yeah
Grace got you

Songwriters: Bart Millard / Ben Glover / David Garcia / Jon Reuben / Solomon Olds

Grace Got You lyrics © Capitol Christian Music Group, Moon And Musky Music


Stay tuned for more in this series coming soon…

  • Pain with chronic SCI (nociceptive pain including visceral pain and neuropathic pain)
  • Respiratory complications
  • Cardiovascular Issues (Orthostatic hypotension and Autonomic Dysreflexia)
  • Neurogenic bowel and bladder
  • Spasticity
  • Pressure Ulcers
  • Osteoporosis and Bone fractures
  • Gastric issues
  • Endocrine Complications
  • Skin changes
  • Additional needs with ADL and IADL
  • Social and Psychological Issues
  • Learning to be happy and joyful despite the complications

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