Embracing life with chronic pain and illnesses.

Posts tagged ‘spastic colon’

Backwards

Chronic conditions take such a toll…stretching us to our breaking point…like a tennis ball on an elastic cord…we are tossed about without rhyme or reason.

We are bombarded by new or worsening symptoms…as we start a medication, deal with interactions between medications, struggle with adjustments to our prescription(s).

Add new diagnoses that further complicate our all ready complex situations…we truly push our medical teams…as they are thrust into the unknown.

The inevitable “Flares” that strike…some we know are coming due to choices we make (like going out to lunch with a friend…attending Parent Night to meet our son’s teachers…a simple short ride in the rig)…others strike for no apparent reason…forcing us to cancel plans…to retreat to the safety of our homes.

It is no wonder that we often feel that we are going backwards…despite our best efforts.

Yet I caught a glimpse of something precious when I paused with my eyes closed…in that short time, I took time to review the past few weeks…months…and saw progress!

I am speaking of those little changes…sitting through a rented movie –actually being able to focus and watch it…no recent falls…sleeping in a four hour block at night.

Take heart! Even when we feel like we are going backwards rather than forwards, we are progressing.

Don’t Underestimate the “Tools” Provided

In the early morning hours while saying a prayer, images were brought to mind.  It was as if I was watching a slide show highlighting the path of chronic illness that I have been traveling.  So empowering and providing such a tremendous peace, that I must share!

With spot light in hand, God provided a glimpse…a “bird’s eye” view of my path.  It was like looking at a map.  I could see that with each boulder, rock slide, downed tree, or gaping hole there was a small, hand drawn box.  The boxes ranged in vicinity to the obstacles…sometimes it was next to the obstacle, sometimes it was a mile…yet with EACH impediment there was a box associated with it.

This personalized Isaiah 64:8 — “But now, O LORD, thou art our father; we are the clay, and thou our potter; and we all are the work of thy hand.”

These boxes were the many “tools” that have been given to me!  I am truly humbled and overwhelmed as I ponder this revelation…friendships, medications, Bible verses, change in attitude, phone calls, songs, surprise visits, text messages…

Some of these “tools” reappear to demonstrate how some are repurposed like my hernia belt that my husband had modified for me due to my Colostomy.  This belt is now providing some relief to the Sacroiliac joint that is inflamed as I await the appointment for a steroid injection to reduce symptoms.

As I await results from additional testing, I am thankful for the “tools” that God has granted to me, especially for my family, friends, and medical team.

Another Tangent

As if our body’s aren’t under enough stress with our hidden illnesses and conditions, there always seems that more gets added to our plate!

I have been absent in dealing with “new” pain affecting my lower back and both legs. Results of the MRI showed Herniated discs (L4 and L5, S1 and S2) and arthritis in same area. So yes, definitely Sciatica.

I will go in for steroid injections next Wednesday. I do hope they provide relief. It would be SO nice to go back to my “usual” pain!

Another Scan Completed

Halloween morning I was scheduled for a Gastric Emptying Scan to see if my stomach is also involved in my GI issues.  I can hear the question all ready…”why did it take so long”?

Like so many with chronic conditions/illnesses, we are dealing with a number of disorders/syndromes that have a lot of overlapping symptoms.  In my case, the precursor was fissure trouble from a very young age.  These fissures were just the beginning of a long, hard path of acquiring diagnosis after diagnosis.  Strewn with procedures, further testing and surgeries.

This latest step is a “gift” from my current pain pump.  My GI Specialist would not have ordered today’s scan without my being able to specifically describe my continued GI issues with him.  This ability to determine (or better word — guesstimate) what condition/illness is the forerunner led to my realization that there is something going on that has not been addressed!  These continued issues of bloating, stomach pain, abdominal cramps were subtly different.  It was almost camouflaging itself as an IBS flare…yet, again…there was a nagging difference.

Fast forward to this morning’s scan.  This test was quite different from others in the past. No clothing had to be removed…would have been able to keep my coat on if I felt more comfortable in it!  It started with eating some “radioactive” eggs.  By the second bite, my body remembered that taste…albeit in a different format — thick shake and also a more liquid variation.

I remember looking at the bowl, afraid that I would not be able to eat it all.  I asked the technician how much was necessary for the scan.  His response was a few more bites.  Yeah!!  I managed to get enough down to head into another room for the scan.

Lying flat on the table, arms close to my sides, I was slid into position.  A boxlike piece was then lowered (which required some self talk to calm my PTSD).  The images were gathered in minutes.  I didn’t have to hold my breath or alter it in any way!

This scan process was performed roughly every 50 minutes.  So in between scans, I was wheeled back out to the waiting room (thankful that I had my comfy wheelchair)!  It can take up to 4 scans…thankfully, I only required 3!

The hardest part of this scan was not being able to take the oral pain med.  Thankfully my pain pump was doing its job! Would have never made it through this without it.

Beauty and Tranquillity 

Pain Med…

It has been a while since I blogged….time has gotten away from me! With my body adjusting to the pain med which has taken a slight edge off (yeah!)….extreme brain fog…registering our son for 8th Grade (YIKES)….and going out of town for a long weekend….followed by the inevitable “week after”….LOL

The pain med did help with the usual increased flare that follows the time away. I found that I was more tired and dealt with much more nausea than I have in the past. My body was very heavy and tired…

I had a follow up with my pain specialist…we have established the next step! I will continue to use the pain med as a “band aid” until I can get in for a trial to see if a pain pump (Targeted Drug Delivery) will work for me.

I am anxious yet ready for this next step. The risks of the pain pump are outweighed by the benefits….the idea of not having my internals in distress (just part of the necessary side effect of the pain med) is huge since my IBS-D and overly sensitive intestinal tract are not pleased….

I am gimping along with the great suggestions from my GI Specialist and my Low FODMAP diet…it is just nice to think there could be an option that might work for me!

IBS + Fibromyalgia/Polyarthralgia +++

As we all know, we are not dealing with only ONE condition…..those of us with Fibromyalgia are dealing with any number of other conditions….

My biggest tormenter….in addition to everything else that I am and have dealt with….is IBS!  Primarily IBS-D!  (Gross as it is…it is one of the reasons I am SO thankful that I have a permanent colostomy!  It buys me time!  I do not have to rush to the restroom as fast…)

I was able to see a great nutritionist several years ago who placed me on a Low FODMAPs diet.  The food journaling….the extreme start of the strict diet….was definitely worth it!  Through the years I have been able to learn how my “gut” reacts to food….to seasonings….to additives…etc.  I have learned what to completely avoid….what I can tolerate….what is totally safe….

However, the Fibromyalgia/Polyarthralgia/Chronic Pain Disorder completely override all this careful, proven planning!  The stress that the body undergoes while dealing with our myriad of symptoms….triggers my IBS-D in such a nasty…horrific way!

No longer is it a simple notion of knowing I accidentally ingested a touch of garlic in the darn salad dressing!  It is now….”out of the blue”…..those tell-tell cramps….those gut wrenching knots….that overwhelming “sick to my stomach” feeling…..the horrific bloating….not to mention the persistent diarrhea…..followed by the absurdly tired/sore tummy muscles!!

The IBS flares require total, complete rest…..which of course makes it difficult to do the stretching I need to do for my Fibromyalgia, etc…..

Thus….the most vicious cycle!

Tag Cloud