Hi everyone! We really apologize for the lack of updates about C's recovery, it's been a rather challenging month since the surgery. But, we are so thankful for each and every one of you who have been praying for us, thinking of us, and reaching out during this crazy time.
We kind of left the previous update in a limbo. Day 4 post-surgery was crazy, we thought C was going home that day, but since he saw some blood in his output, and the bloatedness and nausea, he really wasn't confident even to send himself home. Before I left him at the hospital, the doctor had ordered a bunch of tests and we had been waiting for the results.
But, Day 5 came as a surprise.
His surgeons came to visit him and after reviewing the results, he was cleared to go home. They gave him the confidence that this is simply part of the recovery, and that in order to recover quicker, it would be better for him to be at home - so that he can have better access to the washroom, and be more comfortable as well. Being at the hospital is really no fun. So, C packed up his bags and his parents brought him home (it was a monday morning, and I was stuck at work!)
was where C was, for the next couple of weeks. Before we had any of C's surgeries, the doctor warned us that the recovery from the second surgery was going to be hard. He said we would probably hate him for a while, and we kind of understood what that meant once we started life back home.
So when C came back, we realized very quickly that C's jpouch was finally fully alive and functioning. He started having a ton more output and urgency, which he didn't have much of when we were at the hospital. For the first week and a bit that we were home, these diapers were our best friend. We were joking around because we were working on our registry for the baby, that maybe we should get a diaper genie now to put all of his diapers. But, the first week back was essentially horrible, especially at night. C was up every hour/half hour at night - so we were saying hello to sleepless nights before the baby even came.
With the second surgery, as I explained in my previous posts, it meant that everything is now reconnected back to his butt, instead of having an external pouch. Inside his body was a jpouch, a j-shaped pouch made of his small intestine, that is now doubling as a colon and a rectum. The doctor told us, as well as other patients have told us, that the first few weeks were going to be rough. The body is adjusting to having a new colon and rectum, and this part of the body is not used to holding anything. The small intestine used to just pass on food after gathering the nutrients. It meant that when C even had a drop in his pouch, he would feel the urgency to go. You can't really hold it yet, especially in the beginning, so it's inevitable to have accidents. And also, having this much output makes you so physically tired, that even if you could hold it, at the end of the day - you're so worn out. Add to that potential dehydration and not getting enough nutrients... the body is just so beat up!
You know when C's at his wits end, when he'll go onto a forum and read up on how other people are feeling.
Thankfully, he received quite a bit of consolation and encouragement from other jpouchers that the first few weeks are really rough. True, there are some people who seem to have the most amazing, miraculous recoveries - but there were also some that took a couple of weeks - or months, to get better. Week 2 was filled with unsureness whether or not things were supposed to be like this or not, so hearing from co-jpouchers was a good thing for us.
From watching on the sidelines, I just felt so helpless watching C agonize over the toilet when I thought the worst of those days were over. It was a mixture of urgency, discomfort, and the frequency was just wearing him out. I could hear his groans and frustration that could not simply be put into words. It was heartbreaking and tear-filled to say the least. After the toilet, he would spend time sitting in a hot tub of water to help soothe his butt from his craziness and just to relax the muscles a little bit. And oh, someone, please invent something that keeps the water in the hot tub hot.
Around the middle of week 3 was when we started feeling some improvements. From about 15-20 a day, we were down to around 12-15 (small yay!), and the output consistency was slowly getting better. C stopped wearing the diapers midway through this week, and we thought finally we're starting to see some light at the end of the tunnel. C was also able to start running some errands outside the house on 'safe times', which is usually in between meals, like in the mid-afternoon. He looked a little better and had more energy, and thankfully he had been busy working on his rigs, so that gave his mind something else to work on. I even remember the day he was able to go for a walk to the nearby supermarket, and bring back snacks, and that took an hour - so that was an achievement.
Sadly as week 4 rolled along, things dropped back up to 16-20 poops a day and the output started becoming more liquid. At some point, we even saw some blood. We started doubting and wondering what's going on, and we even thought that C had pouchitis, which is inflammation of the pouch caused by bacteria. When you're at your wits end, you'd start self-medicating, and we had a batch of antibiotics left from a just-in-case prescription, so C started taking it. Within 24 hours there was some improvement so we're back to 12-15, but after that, it kind of tapered off. It made us think that maybe it really wasn't pouchitis, and especially after meeting the doctor on Friday, it wasn't. It's just so hard when you see the one you love suffer so much and there seems like there's nothing you can do to speed up their recovery.
If you're wondering about C's diet, we had kept it really easy and simple in the beginning as well, a low-fiber diet, and slowly reintroducing things. We kept a food and output diary, but it's really hard to pin point things at this point when he's still recovering. Even the doctor said it's tough to find out at this point because the pouch is still adjusting, and the time to adjust varies person to person.
Just last Friday we got to visit the doctor and he does think that C's output is too high, and so right now C's on a full dosage of Imodium, having 2 after every meal and right before bedtime. He also recommended to have either white bread or rice every meal to help absorb food, and to keep a diary of the output so that he can monitor it these next few weeks. Imodium usually slows down your intestines, and it will help the pouch adjust to having something in it, and hopefully hold for a longer period of time.
Since the new medication combo, C's been able to get his output down to 10-12 and has been able to sleep longer stretches in the night, which has been a huge relief for him. It's still really tough and I know C still struggles to hold the output. There's still room for improvement, for sure.
Almost everyone I know, who has asked me how C is feeling - I wish I could tell you that this recovery has been amazing, just like the last surgery was. But the answer is not yet, but we are holding on and believing that it will happen soon. The song that we've been singing lately has been Great is Thy Faithfulness, because know that in spite of all of these struggles, God has provided so much for us, we've only grown closer together as a family, and the amazing encouragement knowing we aren't in this journey alone. We're surrounded by amazing friends and family, and people all over the world praying and caring for us. We really, really thank you from the bottom of our hearts. Baby Chew is also getting on the discipline of praying everyday with us, as we pray together for C.
All I have needed, Thy hand have provided.
So I also wanted C to share in his own words how he has been feeling the past little while, with the same questions we asked from the last surgery.
Now 4 weeks post-op, how are you feeling?
I do not have any major pains, just the urgency and frequency still high and that is quite frustrating and tiring.
Do you have any challenges right now? If so, what are they?
I haven't really been sleeping through night, and I still have to go a lot especially after eating. It makes me really anxious, as every meal has been different, so I haven't eaten out since.
Would you [still] recommend the surgery to fellow patients?
I would still recommend everyone in my situation because even though the recovery is tough, once the body adapts to it, it's the ideal situation. You will be eliminating [external] bag changes and additional materials. Emptying the output is no longer like diarrhea when I had UC, where there was a lot of pain. It is more like letting things out just like the pouch, and right now it's my body learning to hold the output.
What have you learned so far in this journey?
To never undermine the importance of your health. It's amazing how our bodies can adapt after changing our plumbing system. I also understand now why my surgeon told me I would hate him post take-down surgery. I needed to wear a diaper for 2 weeks. The recovery can be tough but once my body gets used to it, I'll be in a much better place than before surgery (with UC).
How would you describe your walk with God through this experience?
Walking with God through the toughest times always has its challenges. Even if you know that these things do happen to people, it's never easy to accept it when it's your own struggle. But I'm thankful that through God I've experienced love and support of all kinds. I also thank God for allowing people to come up with surgeries and scientific methods of resolving my UC with a j-pouch. Through this experience I've been able to share with others my story, and it really does bring a great perspective to life. This world is really only a waiting place, and one day, we'll be in heaven and feel no pain, stress or anxiety!! This journey has brought me even closer to God and my wife, and that is priceless.
Love, C & K & Baby C