Yesterday we just posted about our first day in Cusco, Peru, and we just wanted to give a little update on how C is feeling. We were so grateful to celebrate the Canadian Thanksgiving away in this beautiful, historical city, but we know full well that without C having this surgery, we wouldn't have been able to go on this trip at all.
From our last update, we still had some issues with the ileostomy bag after one month post-surgery. We were changing bags every single day, which is also an event in itself. So many things could happen in a bag change, especially because C has an ileostomy (the output can be more liquid, vs. a colostomy where things can look more like normal poop), so things can get runny. Ostomy supplies aren't fully covered by insurance (and there's a cap to how much you could spend), so the daily change was a handful to say the least.
After a week, we visited the ostomy expert again and she recommended that we tighten up his belt more, plus adding a new brand of barrier ring. Additionally, he was advised to take a small dosage of Imodium to help thicken his output. Remarkably, after this change, things started to turn for the better. Yay to no more broken skin! We even ran a test, if it was just the belt, or just the barrier ring, and both were required to make this better. Yes, C was already feeling better before this, but the bag situation was getting annoying and C felt he couldn't really move much because it was compromising the adhesion. But, by God's grace, this bag situation improved drastically and C was able to go out more, and bag changes are now 3 days apart.
I don't even think we could've gone on this trip comfortably, let alone do all this walking, without the bag situation resolving.
So here's our setup now!
- Marlen Convex One-Piece Drainable Ileostomy Bag - these are probably the ugliest bags in the market (LOL!) but they work the best for C's body. The way his stoma is shaped, the rounded cone shape works so well and reduces leakage. It's also super flexible, which helps when he's moving around. All the other brands may be made better but this brand has the best shape and flexibility for Clement. Now that there's no more swelling from the surgery, we have a 25mm precut one now, so we don't have to cut it out every time.
- Niltac Adhesive Remover - C really likes the wipe version of it, even though I initially liked the spray instead. But we use it to remove adhesive and clean the area before putting on the new pouch.
- Skin Tac Wipe - This essentially makes the skin around his stoma stickier, for better adhesion. After cleaning the area, we put this on to make the bag stick better. Whenever he has broken skin - this wipe stings so much!
- Brava Protective Ring - This barrier ring is what has helped C's skin heal, and reduce leakage. We used other brands before, but they tend to swell up and choke the stoma, but this one just works perfectly for C. We put this right on top of the hole on the bag, so it's between C's skin and the ostomy bag.
- Adapt Stoma Powder + Cavilon Wipe - We use this whenever C has any broken skin, to put a protective layer on top of the skin, so it can focus on healing and not get any of the acidic leakage on it. We used it a lot when he had the broken skin - we don't think it really worked, but, we haven't been using this much at all, so it's great! It's messy to put on.
- Other things - gauze, plastic bag, paper towels, q-tips are all part of the exciting bag changes!
When we had our first appointment with our surgeon, he told us C could get his life back. It seemed like a dream, and here we are, living it.
It really feels surreal to see C feeling so much better, especially now that the bag situation has improved drastically. In fact, he's back at work this week. We can't help but to be grateful for every little thing. The other day, at church, when some of our friends who have been praying fervently for him, saw how much he has improved... my tears just kept falling down my cheeks. I felt a little embarrassed because they were so uncontrollable.
But you see, for a while, we didn't know what to hope for.
We knew that God had every ability to heal C from this chronic disease, but we know there's also times that God allows these diseases to continue. We felt that we were in the latter situation. But God had a plan for us, through surgery and healing, so that we could restart life and move forward.
I realized that there's healing to be done on my end, too. Over the past years, I've probably developed some anxiety and excessive worrying and stressing over C, that has caused me to estrange myself from people and interaction. More often than not, I also felt alone and overwhelmed from being his support, from work, believing the lie that no one can truly help us. It doesn't help that a lot of people can be really insensitive about his suffering and what we had been going through, and often provide us with advice on what to eat or what new medicine to try. Great intentions, but it sometimes isn't what we needed. Additionally, I quit my job and pursued my business full-time. It seemed like a lot all at once.
There were lots of wet pillows and tearful prayers.
But, we are thankful for every one of you, who fervently prayed for us in this journey. Our family, and close friends, who unceasingly prayed and supported us. Whether it was by cooking us a meal, or helping me at my work, or sending us a message of encouragement. And of course, C's approach towards all of this. I think he's the best patient I could ask for. He barely complained through all of his pain, in fact, most people didn't even think (or believe) he was suffering. It eased the burden we were both carrying.
So this thanksgiving, we're even more grateful than ever for this new start to life. We're big on health is wealth!
We visited the doctor shortly after his week 4 and he said C was doing great. We had the x-ray and the tests done to prepare for the second surgery, but it still hasn't been scheduled. Please continue to pray for this second surgery date so that we could focus on recovering (and traveling, haha!).