It's been a few weeks since the surgery! Four, to be exact. While it's been a journey, we are so thankful and grateful for this chance to restart life. We know that God has given us this experience so that we could share how God has been faithful to us, and here's our latest update.
Week 1 Post Surgery
Surgery and the week at the hospital was no joke. It was tough, but God saw us through it. I wrote about our day-to-day here in this previous blog post.
Week 2 Post Surgery
We're finally home! The first few days were quite a bit of an adjustment trying to understand how things worked. My sister and I ran the Seawheeze Half Marathon, which was super fun especially because we got to do it together. We were in such high spirits!
However that same day, C started having a lot of pain. C's always been good with pain but this one was constant and it didn't taper off at all, even after resorting to pain meds. He also started vomiting. By the evening, he was in so much pain that he honestly looked like he was in labor.
Thankfully, we decided to head to the hospital. We went to the same hospital, St. Paul's, where he had his surgery, even though it's not the closest hospital to us. And by God's grace we got attended to really, really quickly. The doctor saw to him right away, and was able to run all the blood tests and x-ray's. Within an hour or so we were finally admitted. After emptying a saline bag on him he was shaking so much, that I was seriously scared what in the world is going on - turns out it was shock from the saline. Then after two shots of morphine he finally had some relief to his pain. The surgeons came by and poked his belly and surgical site. The blood tests and x-rays turned out to be clear, so at this point we have no idea why he was in so much pain. Of course we assumed it was an obstruction, but based on the x-ray's, and C's output it really didn't seem like it.
The doctors decided to let him stay the night to observe and see how he would feel in the morning. His surgeons were going to be back in the morning as well, so it was the best we could hope for.
And honestly who can sleep in these circumstances? I'm glad C was able to fall asleep while we were at the hospital and get some much needed rest. I spent the hours praying, worrying, praying, worrying... fell asleep at some point, but then I was also a little too anxious for the morning, so that we could speak with the surgeons.
And really by God's grace, C's pain had dramatically decreased at this point. He felt so much better already, and by the time the surgeon resident came along, she was ready to discharge us. We still opted to do a CT scan though just to make sure everything was clear, and thank God there was nothing there. So the verdict was that it must've been an obstruction due to the swelling we've had since the surgery, but by the time we had gotten to the hospital it must have been close resolving itself - hence the scans all came out clear. It was just incredibly painful to resolve!
Thankfully, after that Clement no longer had that same pain. Praise God! We were even able to celebrate C's 30th birthday a little earlier, while my youngest sister was still here. While a third of his years on this world has been tough, we're really so excited to be able to hope for a better life.
Week 3 Post surgery
During this entire time, C has been going back and forth with the stoma supplies to find the right appliance. Because C had a loop ileostomy, his stoma has a weird shape and angle. This posed a struggle, making it difficult to avoid leakage and broken skin. If you see the illustration below - C currently has Figure A. A loop ileostomy with a j-pouch created (but not yet being used). Soon, when he has his second surgery (Figure B), the ileostomy would be reversed, his small intestine would be reconnected, and his j-pouch would then become active.
At this point, C has very little and almost no pain at all any more due to surgery, but the stoma situation is a little annoying - it's itchy and painful and a source of anxiety. You see, the output that comes from the stoma is really acidic and can really irritate the skin, and it's pretty much like a burn. In concept, the appliance shouldn't let any of the output touch the skin at all. It's a little bit of trial and error to find the best appliance, so we've been working hard at this with the stoma nurse.
Week 4 Post surgery
At one of his stoma meetings, he was able to get treated by one of the experts / instructors! So at this time, his stoma set-up is slowly getting better, less irritation, and the skin around his stoma is getting better. C also has way more energy now, and he can pretty much eat anything now, too! It's incredible to see his progress because I used to have a husband who barely had any energy to go out, and now... he's just wanting to be out all the time. How can we not thank God for this amazing turnaround, that we never had expected to see?
We also got to visit our surgeon this week and it turns out due to C's amazing recovery that we would be having his second surgery sooner than later as well, so please keep that in your prayers if you remember us.
I know that it's mostly been me, chatting away and reporting, but C really wanted to share a little bit of his experience from his own words, so here is a snippet from C! :)
K: What was your diagnosis?
C: I was diagnosed with ulcerative colitis, an autoimmune disorder in the colon, and I had it for 12 years. This made me have a dysfunctional digestive system, and made me go to the washroom a lot, and there was a lot of pain and bleeding. Most of the time, I was anxious about it, whether I would make it to the washroom or not.
K: What made you decide to have surgery?
C: It was for a few reasons - but I guess the main reason is that I have exhausted all the medications that only manages symptoms. I was not eligible for clinical trials due to the fact that I have failed to respond to the current medications. With surgery, the risk of colon cancer is gone. Another crucial factor, honestly, was the surgeon. I went there to understand my options, but he definitely sold me and told me that I would get my life back! After suffering for so long, those words are just a beacon of hope. So after prayer, and the peace that we felt, we decided to go for surgery.
Now 4 weeks post-op, how are you feeling?
I am feeling great, no more ulcers, no more blood, and no more pain! I still have some tightness in my abdomen area but it is normal for healing post surgery.
Do you have any challenges right now? If so, what are they?
The ostomy bag fitment. Because of my loop ileostomy, my stoma is in a weird shape and it causes the bag to leak. Also the way my stomach is, there is an indention so I needed a really convex ostomy bag. I am still fine-tuning it, with barrier cream/paste so it won't leak. At the moment, I have some burns on my skin from contact with the output. Also, because my small intestine is connected to my j-pouch which is connected to my anus, I have mucus coming from my butt. Believe it or not I still have to sit down and release this mucus! At least I am able to control most of it. But this is nothing compared to what I had to endure all those years.
Would you recommend the surgery to fellow patients?
I would recommend this surgery to any who has mild to severe colitis or crohn's. There is no cure for this ladies and gentlemen - why pump your body full of medication that only manages it? Also the risk of colon cancer goes up, and there's also a lot of side effects from the medication.
What have you learned so far in this journey?
That I am not invincible. Health is more important than anything, you really cannot put a price on it. Surgery was not the last option. Surgery was to cure me from my disease. I also learn the human body is crazy it can adapt to not having a colon!
How would you describe your walk with God through this experience?
Honestly it was very tough in the beginning. The big question I am sure everyone has asked is "Why, why me?" Well over time, I learned a few things. First is, God works in mysterious ways. He will never give you more than you can handle. I am not saying He gave this to me, but He knows I can deal with it and turn it into a positive thing. Second, I learned that this disease wasn't a punishment. Every day I learn of more and more people with auto-immune problems and I share this experience with them. It's a reminder that our world is a broken world, these problems were created by man over time. Third, it's also another reminder that this world is only a waiting place. When we die and go to heaven, we will laughing at the issues we had on earth :)
Thank you so much for reading and keeping us in your prayers! We'll update soon once we know our date for the next surgery.
C & K