On Roller Coaster Rides and Surgery
It's been awhile since my last update on Clement's condition, and I really do apologize for that. To be absolutely honest, there's been many times that we've wanted to provide an update, especially when we get some positives - but sadly it usually goes downhill again before we can even finish a week of positives. Needless to say, it's been quite a rollercoaster ride.
Just a recap of the past years and a bit:
- October 2014 – Onset of the flare-up that is still on until now. Started visiting the doctor again
- November – March 2015 – Tried many, many diets/natural methods to no avail
- March 2015 – Colonoscopy showed high inflammation, but no new action
- April 2015 – First trip to Japan! He was in a lot of pain most of the time, and did not have a ton of energy to go around.
- June 2015 – Start new medication – Entyvio (just approved at that time)
- September 2015 – Started to see some improvement with Entyvio, but with a lot of joint pain. Had a flex-sig scope (not a full colonoscopy) and no improvement at all
- December 2015 – We hit a plateau with the improvement with Entyvio and has gone down since.
- January 2016 – New doctor!!! She wanted to do a flex-sig scope to check, and it looked like there was some improvement, even though Clement hasn’t been feeling any better. We went on prednisone to help but once the steroid therapy tapered off, he was not feeling good again.
- April 2016 – We started doubling the dosage for Entyvio
- June 2016 – Clement started to gain some weight, but lost it all after a food-poisoning incident in his trip to Mexico. We hadn’t seen much improvement since we doubled the dosage, but this set us back a couple of weeks.
- October 2016 – Clement went back on prednisone which is the steroids, and we flew to Japan and Malaysia. Clement felt amazing this trip even though we had the craziest of foods. He was able to try staying at a ryokan and he felt thoroughly relaxed! We surmised that being on vacation and relaxing was good for him.
- November 2016 – We came back from our trip and it went downhill again, most likely because we had to taper off the steroids.
- January 2017 – We had another scope, and we had to stop Entyvio as it was no longer working. Clement was asked to try Simponi, a new medication that was self-injecting. Clement started to gain considerable weight by this time.
- March 2017 – Clement went back to his Naturopath, but he actually got so sick after all the medications that he took that we stopped most of them.
- April 2017 – We went to Japan again, but this time around Clement didn’t feel any better being on vacation
- June 2017 – We had another scope, Simponi wasn’t working either, so now he’s on new medication called Stelara, as a shot in the dark because it hasn’t been approved for ulcerative colitis (only for Crohn’s), but some clinical trials have been showing positive responses.
It’s been almost 3 years in this flare-up. I know this may sound weird, but I feel bad sometimes for the people that constantly pray for us, and catch up with us and we have no real good news to share. But don’t feel sad for us – this entire journey has been truly enlightening and has only really brought us closer to God. We have had so much to gain from this experience, probably much more than what it has taken away from us. I just wish I could at least tell you that in the physical sense, that he’s feeling better.
But no matter how strong C is mentally and psychologically, I know this has affected him immensely. I watched how my active, healthy husband who had all the energy in the world to travel, eat delicious foods, achieve so much at his workplace and enjoy his car and motorcycle hobbies — struggle on a day-to-day basis with pain, fatigue, uncontrollable urges, and anxiety. It’s truly heartbreaking.
On a weekend, he’ll tell me how much he wishes he could go for a motorcycle ride, or go out for dinner with his friends, or go on a date with me but we both know that if we forced him to do it, that subconsciously his body would be so uptight and anxious, worrying about where the next bathroom is, or if he’s going to make it home without an accident. This is just not the way to live. And inevitably, how can I, as a wife, not worry? When I plan our trips, I have to make sure it’s a stress-free as possible from transport to transport – and wherever we are going has got to have a washroom. It’s a vicious cycle of worrying, and trying not to worry, but still having to worry because I still need to do our situation. I wish I could be strong and say that it’s okay, I can deal with it – but it’s still tough to go through.
Recently we went to Edmonton for our friend’s wedding and we were honestly really, really excited for our friends because they were there for our wedding as well, and then we were able to witness their engagement here in Vancouver. C grew up with the groom, too, and so they share a lot of happy memories in school together. But sadly – whether it’s food poisoning or his flare-up just gone worse, C struggled to be a groomsman throughout the day. He was so weakened and fatigued, that at the end of the wedding, right after the speeches, we had to bid farewell and head straight to the hospital. And of course, because Clement didn’t look like he was dying, we had to wait, wait, and wait some more. I obviously have a love-hate relationship with the public health system. Over 3 hours of waiting and then more waiting for the doctor once he was actually inside, and of course, there’s not much to do but to run tests and wait for results. He was given some antibiotics and eventually sent home, because we were flying back the next day, Sunday. Before we left for the airport, we stopped by Clement’s grandpa, who’s 98 and kicking. He recently had a tumor in his colon and had surgery, and currently has an ostomy bag. Aunty Christine, who helped take care of grandpa actually brought out his supplies and showed Clement how it worked.
After our recent colonoscopy in June, our doctor told us that she would be sending us to a surgeon to discuss options, and also another doctor because he has access to a lot of clinical trials in town. Since Clement has “failed” 4 different biologics (Remicade, Entyvio, Simponi, Stelara) on top of his other medications, it might help to talk to understand what his options are.
As I wrote before, ulcerative colitis is a chronic disease and it currently doesn’t have a cure. The tough part about it is that every person’s body is different, so with the medications it doesn’t always work – it’s a lot of trial and error. Some people’s UC is also different – especially the mild cases, they can take medication and it’ll stop and appear cured. That’s what I would say about a lot of people online that either take medication or do a certain diet, and all of the sudden, there’s no more issues and their UC seems to be gone. I also know of some people who have been able to manage their symptoms with diet, but sadly with Clement, it appears that neither diet nor medications work. The sad part about medications too is that, while it may work for a little while, your body may build antibodies to it eventually and it won’t work anymore.
Just a few days ago, we had the chance to visit the surgeon and what we thought was an exploratory meeting became a real hope for a more normal life. The surgeon was really upfront with us and had looked through all of C’s documents and pictures, as well as talked with his current doctor about his situation. He explained to us the 2-step surgery that he is recommending to us. The first step would remove his diseased colon and pull the end of his small intestine into an opening outside the body, called a stoma. This would make him empty his bowel outside into the ostomy bag. The second step, would be to close the stoma, and create a pouch with the end of the small intestine and so he would have an internal pouch and he would empty his bowel similar to now. The rates of success were really high, and the doctor believed that because Clement’s UC was really centered around his colon, that this would help him immensely, when the “bad” part of his body was removed. He also told us to do our research, and gave us some people to talk to and blogs to read, so that we could have a better idea of life after surgery, as well as how people started their new lives post-surgery. We definitely left with quite a bit of paper to read.
this is Clement right before we met with the surgeon.
Right after this meeting, we both spent some time in prayer. It’s kind of surreal, but we’re both really at peace with the thought of surgery, all of a sudden. I personally have done quite a bit of research about this before, but I had some qualms about surgery because of the probably complications that some people experience. But, I also knew a good amount of people that had this surgery done that have gone to live fairly normal lives, and I was really quite positive about it. Clement, on the other hand, never really wanted to do it before. This meeting really changed his mind.
I reached out to people who have had this surgery, and while most of them had the surgery done in emergency situations, they all recommended to do the surgery, and shared all their tips and advice to help us in recovery. We also spoke to his doctor, and she also shared that Clement would no longer qualify for the other clinical trials because he’s already ‘failed’ the other medications, the rate of success in new medications for him would be quite slim. We also thought about, what if we kept this colon – how much longer is it going to take for him to heal? Are we going to wait until it perforates and we would require emergency surgery, and potentially deal with even worse issues? We’ve done the waiting, the medicine, and the alternative medicines.
It’s been almost 3 years, and a lot of pain and tears, but we are so ready to reap in some songs of joy on this earth. While we know that there still might be some hardships and complications, but our hope is that Clement would have an amazing surgery and recovery, and transition to this new normal.
So, we are saying yes to surgery.
I used to think that surgery was giving up. Social pressures with his condition had always spoke about healing naturally, and success stories, but we really did try. Right now, I really just want Clement to have his life back… to be able to live life even just a bit better.