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Better Communication Helps me Manage Competing Ileostomy and Dialysis

by Derek Benoit, January 30th, 2022.

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A good representation of a in-person care team meeting. Photo courtesy of Shutterstock.

Better communication helps me manage competing ileostomy and dialysis. It’s that simple. Communication with medical teams in either area helps me prevent extreme swings in symptoms or problems from one condition to the other. Likewise, you, too, can feel better day-in-and-day out. Effectively, you will limit the impact of complications from either end, and live a more comfortable, higher quality life!

What I Hope You Learn from My Management of Competing Ileostomy and Dialysis

Don’t misinterpret this post; yes, dealing with the below events and processes has sucked. However, this is not meant to be a woe-is-me pitty party. The better I proactively communicate issues and results to medical teams the better I feel. I also find myself experiencing fewer swings from one extreme to the other. As a result, I’m consistently more comfortable with fewer severe complications.

More accurately, this post is encouragement for those with comorbidities, multiple medical conditions at the same time. I mean to hammer home the importance of being on-the-ball with your treatment regimens, and with your communication with provides. You HAVE to take ownership of the treatments and regimens. When something’s not working, you CANNOT wait for the providers to figure that out. Take notes. Speak up, Tell then what problems are occurring, and ASK for changes to be made. It’s your body, and they’re your symptoms. Make the treatments easier for you, not harder.

Ileostomy and Renal Failure Opposites Do NOT Attract

While my renal function was gradually declining (I was already approaching functional life end of my first renal transplant) it was ultimately a prolapse of the ileostomy that crushed the remaining transplant function. Firstly responsible was a prolapse of the ileostomy that simply decided not to retract back to normal. It just decided to overstay it’s welcome in the extended state. As a result, blood flow was compromised and necrosis of the tissue set in. Unfortunately, that’s just an ostomy thing to do. Ultimately, it was the body’s reaction to the necrosis that crushed what was left of the renal transplant. A surgical revision of the ileostomy ensued, and in-clinic dialysis began.

New Ileostomy Became a Competitor with Dialysis Care

After the bowel ruptures and consequent resection surgery, I had a lot to learn. Caring for and managing the shiny new ileostomy was daunting. Changing appliances, managing output, and caring for sensitive skin about the ostomy all had learning curves. The most challenging of all new skills was managing fluid balance to avoid dehydration.

Ileostomies Demand Higher Fluid Intake

Per my colorectal surgeon, the ideal thickness of output (yes, this means poop) is wet oatmeal. As gross as this is to describe to the world, it’s a benchmark that ileostomates the world over must maintain on a daily basis. This requires genuine effort to keep up with fiber supplements, drink water, and take in the required antidiarrheal meds. Like anything other maintenance with a complex system, adjustments have to be made constantly. Moreover, as activity changes, weather changes, daily diet changes, so do the adjustments. I’ve found out the hard way that mistakes lead to ER visits.

Renal Failure Demands Limiting Fluid Intake

Now that I’m on my second dialysis/transplant cycle from chronic renal disease, I have more maintenance requirements, this time from the opposite direction. With renal failure, your job is to avoid taking in too much fluid… or salt, for that matter! A mistake in either input results in extra stress on the damaged kidneys, forcing one to have to remove more fluid during dialysis treatments. The fluid removal process is stressful on one’s body enough. Oopsies with too much fluid intake add more stress as your blood pressure swings from (typically) high, to a much lower figure.

To expound on this, your target weight is the lowest weight achievable via fluid removal without serious symptoms of low blood pressure setting in. These include sudden cramping during treatment, dizziness, serious fatigue, and even passing out. The trouble with determining this goal weight, is that I was “asymptomatic” of low blood pressure-until I wasn’t. Once that switch is flipped, all Hell can break loose. Specifically, drop in blood pressure occurs gradually enough until a point of no return in terms of symptoms. Once you reach that “breaking point,” you can quickly snap into a state of the symptoms ramping up in severity in minutes.

How Being Proactive Better Balanced my Competing Conditions

Thus you see the issue with having to manage too much fluid, and too little fluid-at the same time. They’re competing and contradicting conditions. The more I speak up to providers on both sides, the faster helpful changes are made, and the better I feel. If I’m not communicating with providers about what’s working or not working, then I’m doing myself a disservice. I’m also feeling worse than I have to feel! I assure you, when things go haywire with one condition, eventually, things will worsen with the other!

This past week alone, my dialysis team and I increased my dry weight, twice. The results were powerful. Specifically, I’m not forcing myself to stay at an unhealthily low weight via cutting fluids too much. Such aggressive fluid cutting actually caused me to see-saw between dehydration and overhydration, which made me feel much worse than I had to feel. After the dry weight changes, I no longer have to scramble to reverse a mistake and thus risk issues with the ileostomy.

Similarly, many of you readers out there will have comorbid conditions that are difficult to balance. Make the decision to step up, and play an active co-manager role in your treatments. Yes, you will make mistakes that complicate things. You’re human, and it happens. Critically, you need to make detailed observations and diagnose any mistakes you do make. Take note, and make the necessary behavioral, diet, or other changes required moving forward.

Your Takeaway from My Use of Communication to Manage Competing Ileostomy and Dialysis

Communicate to providers any mistakes, what you’ve learned, and what changes your implementing. Should changes providers implement work well, or NOT, speak up. Give feedback. Should you fail to see expected improvements in symptoms following changes, speak up. Give feedback. You’re not just along for the ride. Be sure to work those things over which you have a reasonable ability to control! Ultimately, you’ll feel better, and live better!

Another, more detailed articled for communicating with medical professionals can be found here:

https://www.nextavenue.org/how-to-effectively-communicate-with-your-doctor/

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