On Perseverance / When Healing doesn't come fast

On Perseverance / When Healing doesn't come fast

Perseverance has taken on a whole new meaning for me, and like perseverance is defined:

steadfastness in doing something despite difficulty or delay in achieving success

Nine years ago, Clement was out with friends and had his first hard drink on an empty stomach. He was fine that night, but little did we know that it would trigger something. He started to have multiple bowel movements, experience pain and bleeding for a period of weeks that was starting to raise flags. After a couple of late-night hospital trips, and a colonoscopy, Clement was diagnosed with Ulcerative Colitis, a chronic autoimmune disease specifically happening in the colon. His immune system gets confused and decides to attack itself and creates ulcers and inflammation in the colon (also known as the large intestine), making it really hard for the body to heal itself. This manifests in multiple bowel movements, bleeding, pain, and some people also start to have various side effects like joint pain, etc. There is currently no cure for this disease, most of the medications are just around to help with quality of life. This disease can be characterized by flare-up’s, which are periods of times (could be weeks, months, or years) that have lots of bowel movements and pain “bad days”, and remission, which are periods of times (could be weeks, months, or years) where things aren’t so bad, and one can actually feel like they’re back to normal before colitis.

During his first year of diagnosis, Clement had to take some oral medication to help reduce the inflammation and for maintenance, but he quickly discovered that it didn’t really have an effect. Flare-ups could come and go every two weeks or so, and there would be times that he would just be so sick. He was going to technical school at this time, and he had to take a semester off because his flare-ups were just so bad. On one of his hospital trips, his gastroenterologist said that his colitis is considered moderate/severe, and gave him a choice to either start taking Remicade, a biologics infusion-type medicine, or surgery. He picked to get Remicade infusions alongside oral medication over surgery. Thank God for the medical system here in Canada that covers most of the expenses for these medicine, as they get really expensive.

Remicade, like all biologics, take a couple of months to work, and finally it did and he was on remission for quite some time, or at least the recurrence of flare-ups would happen over a couple of months instead of a couple of weeks. In 2009 he had a pretty severe flare-up though, he lost so much weight over 30 pounds and was really pale. I’m unsure what really brought him out of that flare-up, but I’m glad he was able to slowly get better, because when we met and started to talk in the summer of 2010, he certainly didn’t look sick or pale, and had gained back quite a bit of weight that he had lost.

When we started dating, of course we talked about about his illness quite a bit. I wanted to understand it more, I had never heard of ulcerative colitis in my life. I didn’t even truly understand what a chronic disease was. Being a type A person, I wanted to help, I wanted to do something about it. I can’t just sit still and let the love of my life be in so much pain. I poured myself into research and reading forums and learning. We prayed together constantly for healing to be upon him. We prayed for a miracle, that God wouldn’t just temporarily remove the pain, but for complete healing. Around this time, we also visited a naturopath, who also had blood allergy test ran for Clement. We identified a couple of these “trigger foods” and removed it from his diet. We also started him on a round of supplements, like Vitamin D and probiotics. And literally over time, we just noticed that he stopped having flare-ups. He started to feel a lot better, slowly, from about 40% to 50%, to 70%, to hovering around 75%-80%. We were in remission! We had a slight hiccup the end of the year in December of 2010, and that was the last flare-up we had until now, which lasted only a week! A week! That’s short in “colitis time”.

This entire time, we really learned what it meant to truly rely on God every day. We didn’t know when colitis would ever come back, so our prayer was for everyday that God would sustain us and continue this period of healing. He still continued to take his oral medication and his Remicade infusions every 8 weeks, but we really doubted that they provided any relief, and we strongly believed that God had intervened and had taken his illness away. Almost throughout our relationship he was doing great, and we continued to grow closer together and to God because of this experience.

On June 2013, Clement and I got engaged to be married, and last year, on June 29th, Clement and I got married in the beautiful island of Maui. He was incredibly healthy at this time, and as he would define – “he was at 95%”, which is the highest he’s ever told me he’s felt. He was hovering around 160 pounds at this time. Because he was in remission for about 3 years, he would occasionally attempt to eat some foods outside of his diet without any bowel movements, which made us really think that this illness was gone. And marriage was (and is) good, it was our first time living together, and with that comes some adjustments. But overall, we had a pretty smooth transition to marriage life. And we really enjoy being married!

 

And of course with marriage comes some additional weight gain – haha! Clement and I gained around 5-6 pounds after marriage, which wasn’t an issue for us at all. We were happy that he was still doing well. Clement works as a technician, so he’s out and about in people’s homes all day, so lunches are quick bites – so sandwiches were the thing. I would make these sandwiches and pack them with some meat, veggies and a simple spread. Around this time, Clement was also lent to another team for support for a couple of months, which meant he was either working from home or working at the office and the field more than he was going to people’s houses. He started to notice that he was having more bowel movements, so we decided to cut back a little bit on the high fibre vegetables, and make sure we were strict on the foods he wasn’t supposed to be eating.

Last October, Clement and I had the awesome privilege of travelling to Philippines, where I grew up, to visit for a week. We were so excited about the trip, as it was his first time going to my “home country”. Of course travelling always involves lots of shopping, walking, sightseeing, and EATING. We knew he was starting to have some symptoms, so we were definitely more careful, but occasionally we would let him eat something just to try. However, towards the end of the trip, he had several bowel movements and wasn’t feeling all too awesome. The last 2 days we ate the simplest of foods, like congee, steamed food, anything soft that didn’t have a lot of fibre.

 

When we got back, we decided that we need to acknowledge that colitis was back. He was on this “mild flare-up”, it wasn’t as bad as his previous ones, but it was a flare-up. We decided it was time to visit his gastroenterologist, to see what can we do to nip it at the bud, make sure that this doesn’t progress any further. His first reaction was that Clement could’ve picked up something (like a parasite) when we went on our trip, so a couple of blood tests were ran to see if there was any, and there were none, except the regular inflammation like they would expect from colitis. At this time, because the flare-up was considered mild, we weren’t prescribed prednisone or anything at all, but just to wait until it goes away. Once we acknowledged that it was colitis, we started praying and asking God to heal Clement and to stop the flare-up from progressing even further. Since we hadn’t had a flare-up in a while, I was quite at a loss what to do. Weeks turned into 1 month, and I remember asking Clement, “In your previous flare-ups, how long does it last? Will it just stop on its own?” And his answer was, “Yup, at the most maybe a little over a month, but it just kind of stops on its own.” At that time in early November, I wasn’t truly worried. We trusted that God was going to heal Clement, and that all will be well.

Around mid-November, while I was teaching one of my calligraphy workshops, I had two great conversations with my students. One had designed jewelry for an author who had severe ulcerative colitis, and had “cured” her colitis with a grain-free diet (All Against Grain author), and another was a nutritionist who had dealt with some patients with ulcerative colitis. Now, since our trips to the naturopath in 2010 we hadn’t really gone back, and I did stop researching. Clement and I were really curious about it, so I started reading up on the book All Against Grain, which essentially is proposing an SCD / Paleo type of diet, removing a lot of the irritant-type of foods from one’s diet, and going back to basics and eating like a caveman. We also scheduled a visit to the nutritionist who was going to give us another allergy test, this time using pulse points to indicate which foods we should be avoiding, and what else we can do  in the natural method since the “medicine method” wasn’t giving us any relief at this time. So we updated our list with what he could eat and should avoid, and what he can tolerate in smaller amounts. Since we had a pretty good experience the first time going through the natural way, and it made sense to us that what we eat would affect your bowel movements (i.e. if you don’t eat the irritants, then it’ll help reduce the inflammation), that we would try and it out and see. Throughout this time, we reached out to our friends and family, to keep us in their prayers as we try to get over this hump.

So instead of sandwiches, I started making my own grain-free gluten-free bread. We avoided red meat and replaced it with steamed chicken, and removed the leafy vegetables and the spreads, and replaced it with almond butter. We also replaced our sugars with alternates such as organic stevia, palm sugar, and tried to avoid adding sugar to anything. We simplified our eating habits, and ate home a lot more. We removed a lot of the super rich foods from the diet, and we really tried to be careful as we hit December, where we knew there would be lots of holiday dinners. We also added a number of supplements that we hope will help him heal.

The result was? Zero improvement.

It’s honestly so frustrating to be working and trying so hard and not seeing any results whatsoever. Like saying no to that beautiful slow-roasted prime rib in the holidays, but not really feel any better?  Making all that bread (and making a huge mess) with almond butter, and coconut flour and who knows what – and still have nothing. You read about all these people who go on this diet, and in a week start feeling improvements. We did this for over two months and we didn’t see any improvement. Clement was starting to lose weight at this time, dropping to about 155. His bowel movements were starting to increase and so was his pain. We told his doctor that we need to get a colonoscopy, since we hadn’t done one for almost 5 years now, and it was scheduled for MARCH. And this was around January! Ugh. So long to wait! And some of you who know me, I’m a go-getter. I try to get things done as fast and efficiently as possible. It doesn’t make any sense to me that medication would work after a couple of months. Not only was God teaching me patience, but I’m starting to get a gist that God wants to teach us perseverance. It wasn’t just learning how to wait, but learning how to be steadfast, and unwavering in our waiting, in our faith in Him, in our marriage, while we go through this sickness. And we were just at about two months since we had the start of this flare-up!

Around mid-January, we tried to reintroduce some of the foods back to his diet. We slowly reintroduced beef, and lo and behold.. there was no change. We did stay away from regular sandwiches altogether, but I stopped making the bread. Instead, we decided to go with other lunch options, including adding back grains and rice back to his diet. Since it didn’t seem to make him worse, we just continued on the journey. Thank God for the many people He’s put in our lives that support us and pray for us during this time. I know, with the best of intentions, people tell us about how they know someone who’s had this disease and have done ___ and ____ and now they’re cured, or have heard this new research that this will help, etc. etc. And believe me, we’ve tried. We can’t explain why Clement hasn’t been healed yet, but I know for certain that God is at work in our lives, preparing us for something that we don’t know, and that this experience will really help us go through it.

This was was taken in February, and he was incredibly skinny at this time. Around <150 pounds.

This was was taken in February, and he was incredibly skinny at this time. Around <150 pounds.

Speaking of things that we tried, we also tried juicing. One of our friends gave us the Fat, Sick and Nearly Dead documentary that the Reboot with Joe guy made, and we said, sure, what’s the danger of trying yet another thing. We were honestly quite skeptical at this time, so we decided that we wouldn’t invest in a juicer yet, and try it out for 3 days using one of the juicing companies first and see if we see any improvement, or if we would continue with it at all. I know 3 days would probably not *heal* him, but we were just pretty desperate for anything. I’ve tried my best to do what Clement does for diets, so I did this juicing thing with him too. The first day was pretty easy for me, I was able to go through the day and just drink the 6 juices. Some of the juices were just absolutely gross in taste, but I knew that they would help, like Turmeric. The second day was like, I’m so hungry!! But I treated it like a spiritual fast as well, and diverted the hunger to praying and listening to God’s direction during this time. And the third day, my teeth were honestly feeling weird, they’re probably wondering why we still didn’t eat real food.

Not surprisingly, we didn’t really see a change even in bowel movements for Clement and how he felt. We theorized that it could’ve been too short, or juicing doesn’t really reduce the residue created by the intake, and so we still saw the same symptoms. At the most, it provided a break because his body probably didn’t have to digest too long. At this time, Clement had trimmed down to close to 150 pounds.

In March, we had his colonoscopy. His doctor said he definitely feels he’s more inflamed than he thought – Clement is terrible at expressing how bad he’s really feeling. He also took some samples for biopsy just in case he found something else. Definitely it’s colitis, the doctor said. I was just so relieved to see Clement awake and ok, I forgot to ask a whole bunch of questions after the colonoscopy. The doctor I guess has seen worse, because, until we prodded, he didn’t prescribe us the cortisone enema that we have been asking for, as this was one of those medications that helped Clement out of a flare-up in the previous years. So frustrating. At this time, we were at 5 months on this flare-up, the longest one he’s ever had. With all the things we’ve tried up to this time, we had come to a relative conclusion, in spite of the experiences of other people, that we needed medication to stop Clement’s flare-up, and that natural methods are great for maintaining and reducing the chance of recurrence.

Our thoughts were this, based on our own experience (not saying this is true or not):

  • Prescribed medication is great for some faster results, and can be great at reducing the symptoms. The infusion type medication like Remicade, would still allow colitis to happen but help reduce the effects  or the severity. The idea is that when we reduce the symptoms we allow the body to heal itself.
  • Natural medication is slow acting. It is great for prevention. From our experience it hasn’t reduced the symptoms. In concept, it’s supposed to help address the root cause of the disease, or make the body super healthy with nutrition that it help heal itself.

But because no one knows the real cause of colitis, every person is different, every doctor is different, every treatment and reaction to treatment is different. It’s a shot in the dark. You keep trying until you find it. You pray a lot. A lot. For healing, but also for strength to endure the pain, and for wisdom, to know what to do next.

Early in January, we really didn’t think that this flare-up was going to last that much longer, and so we booked our flights for a trip to Japan and Hong Kong in April. Japan has been on our bucket list since forever, and Hong Kong is just a place Clement and I both love going to, so we were so excited to go. Of course we were pretty bummed that we were going to travel with Clement not feeling great at all, but at this time he wasn’t having a ton of uncontrollable urges. So it really helped when we went travelling, and of course, adrenaline helped, too! There were definitely times during the trip that I had to go exploring on my own because he just wasn’t feeling great. It was really tough to make that decision at times.

Another thing that we tried was probiotics. A school of thought that I read up on was speaking to the fact our colon (and our fecal matter) is largely made of bacteria, and that colitis patients may have had some disturbance or imbalance. So you introduce probiotics to help rebalance it. So we slowly tried various quantities and strains, as we know it is a sensitive thing to try. Eating bacteria can cause a lot of gas, so slowly introducing it really helps. We haven’t really seen any improvement with probiotics, but we continue to eat it just in case.

In May, since we were on this flareup for over 6 months, the doctor decided to run another blood test, as we had suspected that Remicade was no longer working. And sure enough, Remicade was still present in his body after 8 weeks, with no effect. We were mentioning about this new medication, Entyvio, but it hadn’t been approved yet until May. After some delays, we finally started the infusions in the end of June. Like any biologics it still takes time for his body to get used to this medicine. Right now in August, we just finished the third infusion, and we’re at almost 10 months with this flare-up. He’s also around 140 pounds right now, which is the lightest I’ve ever seen him.

We gained a little bit of weight back in Japan, hovering just at 150.

We gained a little bit of weight back in Japan, hovering just at 150.

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By God’s grace though, in this entire time he was still able to continue working. He continues to persevere and work hard and excel at his job; no wonder no one would believe the struggles he’s going through. If you took a look at his performance at work, he’s just blown everyone else out of the park. I am so thankful for God sustaining him through day by day, moment by moment, as there’s definitely been really tough days. We’re at the point where accidents are happening more often, so Clement’s started to wear diapers especially during work. Believe me, I’ve tried to tell him to stop, and take a break, let his body heal. I don’t understand how he’s able to continue to have a smile on his face. Like who can still smile after literally having diarrhea, blood and cramps for 10 months? Only by God’s grace.

Diet wise, we’ve gone completely liquid in certain days just to give his intestines a break, but we really haven’t seen relief. So far we’ve just tried to avoid some of the foods we know are truly triggers, such as dairy and spicy food, gluten as much as possible, carbonated drinks, sugar, and that’s about it. The journey is not over yet. We’ve been praying really hard to God to heal him, and to give us a glimpse of what His plan is, so that we’re not so much in the dark of what is going on. Most people know me as a very strong person, but I’ve gone through my life without much real hardship – unlike what Clement is going through. I think true strength is really being able to go through hardship and still be able to stand up after it, not when things are going fantastic. I’m not going to lie, I’ve never felt so desperate, helpless, broken until this. I’ve gone through and still go through moments of utter sadness, that I would call for myself depression, and it’s greatly affected how I am at work, at my business, and family and friends. This experience has really put many things into perspective for me.

Couple of things I’ve learned:

1. What it truly means to submit to my husband and to serve him.

I’m a selfish person. I admit that. I grew up in a world that we had help at home. I didn’t have to do chores. The idea was that let the help do the chores so that you can do the more important things. Going through these diet changes meant that a lot more is needed for cooking, preparing, cleaning, more than I’m used to. But God is good. It’s training ground for me.  Clement will always be more important than my work, than my business. He’s the primary relationship that I have on earth that I have to nurture and protect.

I also had a much broader and deeper understanding of what the Bible means “Wives, submit to your husband.” Even though marriage is a shared leadership, Clement is still the head of the house. I had way more things I wanted Clement to try, thinking I knew what was best for him. Besides, I was the one doing the research, right? He wouldn’t even touch any of the forums, or websites. I thought that I could take it into my hands, because I had the “best” intentions. But I really learned that I needed to respect Clement’s decision at the end of the day. This is his body, this is his home. I trust him completely. I trust God completely that if He really wants Clement to try something, he will be open to it. And he has, and he has said no to some things as well. I’ve been really frustrated with his doctor and his approach to Clement’s sickness. After all, what kind of doctor allows his patient to  be sick for 10 MONTHS? But I have to respect Clement’s decision to wait and see how God is working. And so everyday we pray for wisdom so we know what to do.

2. What it truly means to let go and let God.

After all the things we’ve tried, and believe me we’ve tried more than I’ve already written down (acupuncture, chinese medicine, elemental drinks, physical therapy, barley drinks…), God has left an impression in me that He wants me to stop trying. Stop trying to take it into my own hands. That He’s got a plan. And believe me, I still don’t understand it. My mind is like a running bullet train. I find a new track and keep running at it – like I’ll start worrying about more and more things like what this will mean for his body long term, and God’s at the controls stepping on the brake, bringing it at a screeching halt. One thing one of our pastors reminded us was that aren’t being punished by God with this hardship; just like why we can’t explain calamities and natural disasters. He’s got a plan, and we just gotta keep trusting. So easy to say, so hard to do.

Paul wrote in the Bible that sometimes we encounter hardships so that we would be able to comfort people who encounter similar struggles with the comfort we ourselves have received. And it’s true – there’s been so many people that have emailed me and messaged me sharing about their own experiences, and I keep in constant contact with them as we talk about chronic diseases. I have a much better understanding of how to respond to people who are undergoing hardships themselves. That “it’s going to be ok” is never the right thing to say. That sometimes I’ll pray for you isn’t enough. That listening and being the shoulder to cry on is sometimes the best answer.

Taken just last Sunday, August 8. 140 pounds. 

Taken just last Sunday, August 8. 140 pounds. 

3. What my faith truly means

I know it hurts to see my loved one hurting. I know my family and friends share the same sentiment when I tell them Clement hasn’t been feeling well. The many tears that have fallen through our eyes, the cries of our heart… how much more is God hurting during this time? How can He stand seeing Clement hurting, for so long? I know He has a plan, but how long will we need to go through this to learn what we’re supposed to learn? So many questions, so many thoughts unanswered. But I praise God for His Word that always encourages. For the people He sends our way to pray for us and to talk to us. I realized that He never promised us an easy life, but that He will be with us through the journey. He keeps reminding me everyday, “Trust me.” This biggest struggle for Clement and I have drawn us so much closer to God, in spite of us not knowing, not understanding what is happening and what’s going to happen next.

In the Bible it says that we must let perseverance finish its work so that we may be mature and complete. Gotta remind myself everyday about that. It’s tough but the new message that God is teaching me is to be thankful every moment. I am thankful for days he doesn’t have to go during the night, or we applaud days when we don’t have accidents. Or slightly less cramps during the day. Anything. Thankful that I still have a husband to love and care for. Thankful that he still trusts God in all of this. And I’m thankful for you, who’s reading this right now. Because I know that you care for us and have been praying for us.

So, now, I’m going to embark on this journey to start blogging about this unexpected journey God has directed our lives to, that by this writing I will be able to share the comfort God has given us.

Love, 

Karla