Have you ever felt like everything was falling apart, that you were sinking deeper and deeper, and unsure if you would ever be able to return to living without constant nausea, pain, and fatigue? I know that was me a few months ago. I was struggling to receive any nutrition at all, even through my feeding tube. I was dealing with constant abdominal and rectal pain from severe colonic inertia and intense daily laxative combinations. I tried biofeedback, physical therapy, and many different prescription medicines until I was finally offered the opportunity to have my entire colon removed. Having a colectomy was a difficult decision on it's own, but deciding whether I needed an end ileostomy (which requires a pouch on the outer part of my abdomen to collect stool) or if I was a candidate for having my small intestines connected to my rectum was added pressure. The defecography results confirmed that my pelvic floor dysfunction was still creating problems with eliminating waste effectively. Therefore the decision was made that having a colectomy with ileostomy was the best possible solution for me. No doubt about it, I was excited, eager, anxious, nervous, and even a little terrified about how my surgery, recovery, and future would be. I am hoping that sharing my experience will help me continue the recovery process while also helping others that are going through something similar and/or know someone that is.
January 7, 2016 was my surgery date. The 2 days prior I prepared for surgery by drinking only clear liquids, completing a colon cleanse, and taking the required antibiotics. Being that my intake was already extremely limited due to my pain, the colon cleanse was rather easy. Unfortunately, the antibiotics were extremely harsh on my stomach and created severe pain, nausea, and vomiting during the night.
The morning of surgery, I was ready to go! All my fears were at rest and I was ready to receive some relief. When I was called back to the pre-op, I was introduced and questioned by numerous nurses and doctors. All were very calm, pleasant, and positive helping me to remain optimistic.
A few hours later, I awoke from the surgery with an IV morphine pump for pain. This was the first time ever, that I've had a pain pump. Having a pain pump allowed me to push a button to receive more pain medicine whenever I needed it for the first 24 hours after surgery. (It was programmed so that there was no way that I could overdose.) After the first 24 hours I began receiving the morphine (through an IV needle), and oxycodone which was later switched to tramadol were crushed and administered via my feeding tube.
The day after surgery, I was thoroughly surprised about how I felt. The concern over what my stoma would look like or how difficult the management of having an ileostomy bag were eliminated. The stoma looked much better than I had prepared myself for and knowing that it would continue to shrink only made it better. The surgical related pain was bad, not going to hide it, but it was not any worse than I had expected. I felt as if I was on my way to recovery and much desired relief.
That was until they began my formula feedings the following night. Since my tube feeds and nutrition had been almost non-existent for the previous months, we began the feeds slowly at 20 ml/hr. Before I knew it, they began increasing my feeds by 10 ml/hr every couple of hours. I began having so much nausea and cramping pain, that I tried telling them that it was more than I could handle, but they kept increasing until I began vomiting, heaving, and in painful distress. The next day they finally listened to me. We dropped the rate back to 20 ml/hr until Monday, as we decided to try a different more elemental formula Peptamin AF. Once again, they quickly began increasing the rate of my tube feeds and my body kept rejecting it. I struggled all day Tuesday and then Tuesday night into Wed I began vomiting my stool and having extreme continuous off the scale pain. My pain and nausea were so severe that I was unable to move, kept my eyes closed all day with moaning, too weak to stand and finding absolutely no medicine that would even begin to touch my pain or nausea. (I was blessed to have still be inpatient when this horrendous pain began. If I had been at home I would not have survived.) After having painful x-rays taken we finally had an answer to my struggles, I had an ileus. This meant that my small intestines were not moving, not awake yet, as a result of a complication from surgery. I was aware that this was a risk, not uncommon yet not a high incidence either. Basically what this meant was that my formula was not moving anywhere (hence why I was having so much pain, nausea, and vomiting). Instead it was backing up into my stomach. To help improve my symptoms, I went back on IV fluids only for a couple of days and set up a continuous stomach drain via the G portion of my GJ tube to allow my small intestines a chance to "wake up". After that, we were able to slowly begin reintroducing my tube feeds. Thankfully, this time was more successful and I was able to be discharged home with a PICC line for home IV hydration to prevent dehydration.
Since being home, I have been able to increase my feeds to 45 ml/hr for a total of 2 cans of formula a day. I am able to wear my previous clothes without the bag being noticeable. The physical healing and recovery from the surgery has gone well, the acceptance and ability to deal with the ileostomy has been fairly easy, but emotionally I am still a work in progress. I strongly believe that the surgery was a success and I have no regrets at all. I just wish some of my other GI issues would improve along with the relief from having my colon removed. The typical hospital stay after a colectomy with ileostomy is 3 - 5 days, however, I was in the hospital for 2 weeks because of the ileus and troubles with reintroducing my tube feeds.
BUT in the end, the surgery was definitely more than worthwhile!
Fighting a difficult health journey wears on your emotions at times. It's impossible to remain strong, confident, and hopeful everyday. Honestly, it would be so much easier just to lie down and give up. But then where does that get you? Has it truly solved anything? Is that God's purpose for you?
During my darkest times, like the one described in my poem below, I try to rely on my faith, family, and friends. This poem was written from my aching heart and broken spirit, with the intention of emptying my fears and sadness on paper. I had no intention to share with anyone, but recognizing my need for emotional support, I shared it with a very dear friend. I was ashamed for anyone to see these thoughts, mostly because they were very intimate, but also because I didn't want anyone to see how vulnerable and hurt I am. I did not want to be judged. Reading the words from deep within my thoughts truly scared me and I didn't want anyone else, especially those I care most about, know how bad things were for me emotionally. I didn't want my family or friends to be worried at all about me. I was, and still am, worn and exhausted. Frustration has been building as all I want is to feel better, to be healthier. I am so thankful for having a compassionate friend that I can trust. Sharing this poem with her was the very best possible move on my part, as it opened up a heartfelt conversation which led to hope and renewed patience. My friend helped remind me that it's alright for me to feel a variety of emotions.
So why am I sharing this poem? I am sharing it to express how important it is to have a support team that loves you and cares about you, that's willing to be by your side, build you up when you down, and hold your hand when you are at your lowest points. I am sharing it in hopes that it will help someone else that's experiencing rough waters, seeing no relief in sight, and feeling like giving up. I am sharing it so you know that you are not alone!!! Faith, love, and patience will help your survive. Better days lie ahead, if you just hold on!
As you read my poem, I hope you are able to feel my personal anguish. Feel my pain. But more than that, I hope that you are able to find comfort in knowing that the storm is calming. Life goes on - if we just hold on and NEVER truly GIVE UP! If we just put our trust in loved ones and GOD, we will survive!
Broken and lost, no longer recognize who I am
where am I going or even why to hang on.
Giving up hope don’t know why I keep trying,
nothing to offer when just barely surviving.
Pain when I eat, drink or even look in the mirror.
Hate what I’ve become why do I even matter?
I’m a failure regardless how hard I try
I want to feel better but relief just won’t arrive..
Thought I had finally figured out a way to heal
yet unmet expectations, only leave me disappointed
The surgery helped no denying about it.
Some improvements noted with other symptoms persisting.
So why do I keep hurting. why do I have to keep struggling?
Why does my intake keep creating harsh consequences.
I just don’t understand. I try to follow all dr orders.
but eating and drinking cause way too much discomfort.
Yes I miss food, I do want to be “normal”
yet impossible when relentless consequences keep coming.
Can’t help but think I could spare my family and self so much despair
If I just gave up, or found a way to quickly disappear.
I feel so alone, my GI no longer with answers
when I say that I’m struggling to receive basic nutrition.
MY PAIN IS REAL! The nausea and heaving disheartening,
I envisioned it disappearing, but still here it’s remaining.
I’ve tried to overcome fears, advocating for self and others.
But how can I now when I can’t even help myself, I just suffer?
My heart aches with sadness when told I’m an inspiration
Because my strength has become weak, leaving me completely defeated.
So I’ll give up my PICC line, Tube too if they want
And wither away silently, my ambition already lost.
My future’s uncertain, how can things ever change
when I’m frustrated, exhausted, and purpose vanished?
My spirit’s now broken, empty, no longer give a damn.
No longer have the energy to keep fighting, just to live like I am.
A proud mother, educator, Gastroparesis & GI Motility Disorder Advocate,
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