Pouchitis: inflammation of the ileal pouch (an artificial rectum surgically created out of ileal gut tissue in patients who have undergone a colectomy), which is created in the management of patients with ulcerative colitis. Symptoms include diarrhea, increased stool frequency, abdominal cramping, pain in the pouch, fecal urgency, tenesmus (feeling of constantly needing to pass stools), and incontinence.
Prior to his j-pouch surgery, this was one of the risks of getting the surgery (between 15-50% of all patients would have it at some point, 15-18% within the first year). I asked the surgeon about it, and he assured us that most of the time, it can easily be resolved by a course of antibiotics and it wouldn't be recurring (80% of all patients would be treated successfully with it). We also spoke to other j-pouchers, and for the successful ones, pouchitis was a fairly rare occurrence for them, and like the doctor mentioned, a course of antibiotics would get rid of it. Seeing that C was young and that he had a really successful ileostomy surgery (the first step), and that he had full control of his mucus output, the surgeon said that C would be a prime candidate for j-pouch surgery, "a poster child" of what looks great. And honestly, with a 6% j-pouch failure rate, and a 10% rate of people having to go back to an ileostomy, we were quite hopeful that this wouldn't be us. He did warn us though that it would take about a year for C to really get a hold of his j-pouch cycle and all, but...
What we didn't know was that 5 month post-surgery, that we would still be in a cycle of pouchitis, which is more commonly known as chronic pouchitis, which occurs to about 5-10% of the patients with pouchitis.
To be honest, after being part of several j-pouch communities, it really seems more than 5-10% of patients with pouchitis (of <1% of all patients) get chronic/recurrent pouchitis. I don't think the numbers are an accurate reflection of reality, because surgeons don't typically take care of the patients much afterwards, so they have no idea what happens to the patients after they've given their spiel, done the surgery, and done a little bit of the recovery care. Because of these pouchitis issues, I also don't feel like C has had a chance to really get a hold of his j-pouch cycles because he started having pouchitis so soon, that we don't even know what's supposed to be normal.
P.S. I'm also really sorry for the lack of updates here, the last few months have been so busy at work and now we're finally on a little bit of a break before the little one joins our world. So be warned, this is a long post!
February (2nd month post-surgery)
Soonafter C's last visit to the surgeon in my last update in February, there wasn't much improvement after taking Imodium, and even less when he was asked to double the dosage (16 tablets a day). If you recall, the surgeon didn't think C had pouchitis because it was too soon for him to get it apparently, so he just thought it was the pouch adjusting to its new role. But because taking 16 tablets of Imodium wasn't cutting it, the surgeon then prescribed antibiotics for Clement, as he finally suspected pouchitis, for two weeks. Thankfully, after that, his output went down to less than ten a day. His pouchitis was "managed" as they would say. There's research backing up pouchitis being an imbalance of bacteria, hence antibiotics is the first course of action for pouchitis. So, we were hopeful that if this was truly pouchitis, that it would go away for good after this course of antibiotics.
And for a little while, it seemed like C was feeling better while he was on antibiotics. In fact, he decided that he would go back to work on March 5th, which was roughly two months post surgery. He would be working in the office first until he can get better control of his health. Around this time, C also didn't use any diapers any longer, he had better control of his output.
March (3rd month post-surgery)
However, March 5th also was around the same time that his antibiotics ended again, and almost shortly after his pouchitis symptoms were back. Regarding output, it wasn't that high number-wise, but there was definitely pain on the inside, where his pouch was. C often referred to it as his "inner butt burn", that created urgency, discomfort, fatigue, and anxiety if he would make it to the next washroom or not. About a week or so of discomfort, he reached out to the surgeon again and he was prescribed another round of antibiotics, again for two weeks. And again, the "symptoms" were kept at bay, it seemed to be better, but not fully better. Antibiotics also made C quite exhausted, especially after work, so we knew that in the long term, we cannot be taking antibiotics like this.
Mid to late March was a busy time for me for travel - we were heading to Edmonton, then to Toronto, and then to Chicago afterwards, too. While we knew C wasn't feeling the greatest, we just wanted to take advantage of this time to spend with our family, and also treasure the time that our little family was just the two of us. In the midst of all of this, C started to join j-pouch communities to get some support to see what he could start taking or changing to help with this situation. He started courses of probiotics, which seemed like the best course of action instead of antibiotics, but until today, we haven't yet seen any strain of probiotics to help, and this is saying a lot, since we've tried so many different kinds.
Soonafter, the round of antibiotics ended again and his symptoms were back. This time around, when we reached out to the surgeon a couple of times to ask what's going on and what we could do next, we didn't hear back. I had to leave for a trip to Toronto, and I had to leave C at home with no clear plan of action on what's next. What we did do though was to contact our previous GI, Dr. Nancy, and C went to the family doctor to get a referral to get back in the system again (we hadn't seen Dr. Nancy for over 6 months, which apparently stops the chain of care).
While I was in Toronto for work, C sent me a text saying, "Don't worry. But I'm going to the hospital." Turns out that he started bleeding / seeing blood in his output and he had been feeling really exhausted and in pain, so he had to get his coworker to drive him to the hospital. How am I supposed to not worry? But thankfully, Dr. Nancy responded to the hospital right away and got to get him some medication (a different course of antibiotics, so that he wouldn't build resistance), and was able to move his appointment up. After running some tests, and seeing his hemoglobin was still good (...his hemoglobin is always good), the emergency doctors sent him home the same day. On the bright side, he was attended to quite quickly, but seeing they can't do much, the natural action is for them to send C home. While I do know that emerg doctors are really not for chronic conditions and are especially unaware towards jpouch patients, I really wish that there was more they can do, and have more compassion towards people that just doesn't seem sick.
I know C gets really tired of people saying, "Oh, you look so good, you must be feeling better!" But chronic illness can be a lifelong journey of ups and downs. Chronic disease patients are just so good at acting strong and maybe even looking strong, because to be honest, what good is it to look and act sick and negative all the time? We don't need your pity, and we know better than to complain about every single thing. In fact, we know the benefit of being grateful for every single moment, good or bad, much more than most people are.
Often times, well-meaning friends and family would tell us to stay positive and hope for the best - and believe me, that's what we've been doing this entire time.
April-May (4th and 5th month post-surgery)
In April, C was in a course of antibiotics for the most part of it, as the course that Dr. Nancy gave was for 6 weeks, but was a different strain, so that he wouldn't build resistance to it. Dr. Nancy was also able to get us into a pouch scope in mid-April as well to take a look at what is going on in there. It appears that C also had cuffitis, which is inflammation in the remaining rectal cuff that is attached to the pouch, which was also inflamed. It also appeared that the way his pouch was made wasn't perfect, it was a little shorter than usual, which probably explained why C would have to go more frequently than a person with a regular sized pouch.
Dr. Nancy said that she would want to talk with her colleagues to discuss the best course of action after the scope, so after a week, she had a plan for C. We felt so much better that she was there to help us and try various strategies to help. She gave C a number of different enemas and medications to try as well, so we were quite busy these two months trying various medications to help keep the pouchitis at bay.
Sadly, it just appears that nothing just seems to be helping still - probiotics, or any of the new medications - once C gets off antibiotics, things seem to just get worse within a few days. C had been also trying various natural medications from the forums that he's been on, and we're just trying to persevere with them as we know they would take time to work. The problem is we don't know what's causing the pouchitis for us to fix it, and the natural remedies seem to be good at preventing it from happening rather than curing it, so it's a little bit of a chicken and egg situation, but what we can do but pray, hope and do our best? Our evenings are getting tons of practice though for the baby - C going to the washroom for #2, and me getting up to pee and to make sure my hands aren't too numb, so we're getting used to the interrupted sleep.
June (almost 6 months post-surgery)
On June 3rd, we also joined our neighbors Flo, Cal and Cory to the Walk for Cure for Colitis and Crohn's in Vancouver at Trout Lake Park. It's the first time that we got to do something alongside other colitis/crohn's fighters out there, and were laughing at the fact that there were only two porta-potties in the entire walk - which wasn't very long, but still! Don't you know who's coming to this event?!
At the end of May, C started another course of antibiotics and since he had a little bit of a break with the antibiotics, it seemed to help better this time. We're a few days since it's stopped, but it's looking like we're in the same boat of pouchitis slowly creeping back again. C also started Humira, which is a biologic that he hadn't tried before, but it's similar to Remicade, which is the medication he had for the longest time. He just had his loading doses two weeks ago, so the next dosage is this week. This is part of the plan that Nancy gave him if any of the other medications don't take effect. Humira is a anti-TNF blocker, which is a medication used by auto-immune disease sufferers, that use a bio-based approach to calm down the immune system, to stop attacking the healthy cells. This is assuming that his pouchitis is being caused by his body rejecting the pouch (therefore triggering an auto-immune response). We are hoping that this will help. But with any biologic, it will take a few months before we'll see some results, it's always a waiting game. In addition, C has just gotten approved for hyperbaric treatment, which is a 100% oxygen chamber that apparently helps to also reduce inflammation. That would start in early July.
So, right now, we're in a season of waiting, and hoping.
We know that nothing is impossible for God, even when things don't seem so bright. We're hoping that pouchitis would go away forever, and that all of these treatments would work. Baby Chew can come anytime now, too, so we're also praying for a natural and safe delivery, and a healthy baby boy that would hopefully never have to deal with this disease ever in his life, but will have a heart that beats with compassion for people with chronic illness.
But like any of these challenges we've faced, it's only truly made our relationship with God and with each other stronger. It's created a more grateful, less complaining approach to life, a greater understanding of life, a yearning for heaven, which can only be good in our books.
I know it's truly tough to support a friend that has had so much ups and downs, so I am thankful for each one of you that have been walking with us in this rollercoaster. Believe me, just understanding when things are rough, or that it's a work in progress, is all sometimes C needs. When he can't make an event, or he just needs to rest - truly understanding that is huge. On the times that he's able to suddenly make an event, or do something exciting, it doesn't mean that he's all better for good either ... it may have taken all the energy he had to do it. For 'cures' and things to try, believe me, we're trying our best too, to trust our doctors and support team to help us get to a better place. And, we can only do so much.
So, please continue to pray for us and our family as we journey through C's recovery, the birth of our little one and our transition to becoming parents. We're not yet at the point of giving up with the j-pouch, we need to at least wait a year before we even consider going back to the external pouch, but ideally, we would like to find the sweet spot with the jpouch as it is really a medical wonder, and in concept a great way to address his disease. Thank you so, so much for your support and love.
C, K, and Baby C