Today marks the end of Crohn’s & Colitis Awareness Week, though for those who suffer from either condition, they will undoubtedly continue to be aware of that fact tomorrow and pretty much every minute of every day thereafter until a cure is found.
For those suffering (or friends and family of those who suffer), the fine folks at Crohnology have assembled a great collection of patient blogs and other resources about Ulcerative Colitis and Crohn’s Disease. Check it out here.
Quick update: My wife and baby are doing great, and we’re adjusting to the new normal of having a baby at home. I have not yet rescheduled my takedown surgery, but am aiming for some time next year. In the meantime, my ileostomy is working well and is a totally livable—if not ideal—situation.
I’ll start updating again if any issues arise or when surgery is again on the horizon, but for those considering J-Pouch surgery, a fellow former-UCer just posted a very helpful FAQ about the process and her experience, which is definitely worth checking out.
I was scheduled to have my takedown surgery (second try) on July 2, and I was ready to go. But life had other plans.
Two days before surgery (June 30), my wife and I spent the day assembling nursery furniture, because I wasn’t sure how well I would be between the takedown and our baby’s September 30 due date. We capped the day with a nice meal together—Mexican food at one of our favorite restaurants, because I knew it would be quite a while before I would be able to tolerate it again. After dinner, we went home and watched a movie and tried to relax.
On Sunday morning, my wife woke up feeling crummy—bad back pain, which quickly became neck and head pain, and then nausea and vomiting. She tried not to complain, because she didn’t want to me to worry before surgery, but I knew she was suffering. We called the on-call OB/GYN, who told us he wasn’t convinced it was pregnancy-related, but told us to go to Urgent Care if it got any worse. My wife tried to rest (between nausea-necessitated sprints to the bathroom), and I got things in order for surgery—charging the iPad and laptop, paying bills, scanning insurance statements, washing my robe, collecting my hospital paperwork, shaving patches on my hands and arms for the IVs, consuming nothing but clear liquids.
Mid-morning, I left the house to run some pre-surgery errands (you know, important stuff like getting the cars washed). When I got home an hour or so later, my wife was in tears from her pain, and we headed to Urgent Care. After a 90-minute wait, we were finally seen. Although the baby’s heartbeat sounded fine through the doppler sonar (after an uncomfortably long wait for the doctor to find it with her busted equipment), my wife’s blood pressure was through the roof. They could run tests there or we could go to the hospital. We left Urgent Care as quickly as my wife could get dressed and headed to the hospital. Labor & Delivery unit. Just 27 weeks pregnant.
For reasons entirely unrelated to me or my ileostomy/J-Pouch.
That was the email from my surgeon this afternoon following my pouchogram. Good news. Now all I have to do is have the surgery.
For those new to Know Guts, a pouchogram is contrast X-ray used to detect leaks or other abnormalities in the J-Pouch. The contrast is administered by gastrografin enema (ugh), and they then use a machine that provides a live view to monitor the contrast as it fills the pouch and take pictures. It’s not the most pleasant experience in the world, but it’s infinitely better than the dreaded triple contrast… (More about pouchograms here, here and here.)
Yesterday, I went whitewater rafting on my company’s annual trip. I’ve done this trip a bunch of times over the years, but this time was different. This was my first trip without a colon and—more importantly—with an ileostomy. I was extremely nervous about it. What if my appliance failed while I was on the river? While I’m stuck in a boat with people I work with miles away from camp? Ugh. I wavered about the trip all last week. Lots of hems and haws. But on Friday afternoon, I decided that I wanted to go, and I had to suck it up and just do it.
There were things that were out of my control—e.g., the effect of the cold river water on the appliance wafer’s seal—and others that I could prepare for—e.g., making sure I was ready if something went wrong. I had back-up appliances in a cooler back at camp (the cooler was necessary to prevent the wafers from melting in the hot afternoon sun). I had a triple-zip-locked back-up bag with me in the raft just in case something happened on the river. I used two clips on the end of the bag to minimize the chance of a leak due to clip failure, which would have been simply awful. I wore loose swim shorts to ensure my waistband didn’t constrict flow to the bag and cause a backup or a blowout (I was a bit concerned about my shorts falling down in a rapid, but better that than a leaking appliance). I wore a stomasafe to keep the bag from getting knocked around too much.
In the end, I had no problems whatsoever. None. My appliance was soaking wet all day. It got bounced around. It got hit with a paddle. It got scrunched and twisted as I leaned forward and back to paddle. But it held up. No leaks. I didn’t even have to change the appliance when I got back to camp. It just worked. This was by far the most intensive activity I’ve done since surgery last year, and I’m really glad I did it. I was nervous, but I was prepared, and I had a great time.
So if you’re out there passing up fun activities because you’re worried about your ileostomy, you should stop. It’s not as limiting as we make it. Be prepared, be careful, but be there.
I had my final pre-op appointment with my surgeon today. We talked about the procedure. My concerns. Her concerns. In light of the problems last time, rather than just jump right in and do the takedown, she’s going to take a look a laparoscopic look at the outside of my pouch to look for any abnormalities. This will lengthen the surgery a bit, but is well worth it to avoid what happened last time. If she sees no problems, she’ll proceed. If she spots something unusual (e.g., a narrowing of the intestine somewhere), she will open up my abdomen for a better look and, if possible, to correct it, before doing the takedown. But hopefully it doesn’t come to that.
As a further precaution, we are going to another pouch-o-gram (CT scan with gastrografin contrast) next week to check for leakages or any abnormalities in the pouch. When I had a pouchoscopy in December, my GI saw a slight bump or narrowing of the intestine at the top of the pouch. My surgeon didn’t see it when she did an exam under anesthesia in April, but a pouch-o-gram should show it. If there is a bump/narrowing that is constricting flow into the pouch, it could explain some of pouch function problems I had last time. A restricted entry into the pouch is likely to result in liquidy waste entering the pouch (as it’s “squeezed” through the restriction), and the pouch does not tolerate liquid waste very well, resulting in a sense of urgency. If we see an issue (or a potential issue) on the scan, my surgeon will know what to look for in the OR (and can fix it). But, again, hopefully it doesn’t come to that.
As my surgery date approaches, I’ve continued to waffle about what to do or whether to go through with it at all. I know I need to do something. My current loop ileostomy is not a permanent solution. It will eventually degrade. It is in a bad position (right at the waistline, preventing me from wearing a belt or sitting without slouching). It is diverting digested food from traveling the full-length of the small intestine, reducing nutrient absorption. I either need to reverse the J-Pouch and get an permanent end ileostomy (i.e., remove the J-Pouch and create a new ileostomy from the freed-up small intestine) or try the takedown again. Over the last couple weeks, I’ve had a couple of small epiphanies that have convinced me—at least for the moment—that trying the takedown is the way to go.
First, a few days ago, as I sat on the toilet at 3am emptying my ostomy bag (as I do every night), a thought flashed through my mind: I don’t want to do this forever. I just don’t. It’s manageable; it’s livable; it’s better than being sick. But I don’t like it. It’s likely that I will have to get up in the middle of the night to “empty” my J-Pouch too, but it’s just not the same. There is something about this plastic thing hanging off of me, the crinkle of the plastic, the weight of it, and I’m just not a fan.
Second, after explaining my surgery options to a friend at work last week, she immediately responded: “Might as well go the optimistic route and try the takedown again.” The optimistic route. “Optimistic” is not an adjective often used to describe me. And, given the complications last time, staying optimistic about trying the takedown again has been particularly challenging. But my friend is absolutely right. Might as well go the optimistic route. Might as well try again for the life I wanted when I decided on surgery a year ago. Might as well believe it will work this time. If it doesn’t, I can always go for a permanent ileostomy down the road, but I might as well go for the best possible outcome now.
Takedown it is, July 2.
Yesterday was the Take Steps for Crohn’s and Colitis walk in San Francisco. I was grateful to participate (last year I was too sick), and we had a lot of fun. There were a ton of people there, including lots of folks from UCSF, whose team included by surgeon, nurse, GI, and Rebellious Colon. I was part of the San Francisco Social Support Group team, and it was great to meet some other young folks who have dealt (are dealing) with similar concerns. This was the first time I’ve (knowingly) met anyone else without a colon, and it was nice to see folks living their post-colon life to the fullest. (As a sidenote, SFSSG’s co-founder wrote one of the first J-Pouch blogs I found when I was considering surgery. It was a tremendous resource at the time and an inspiration for this blog, and it was great to put a face to the words.)
Take Steps by the Bay
The event raised almost $150,000 for Crohn’s and Colitis research and patient outreach, and—thanks to my extremely generous friends, family, and colleagues—I was the #2 individual fundraiser, collecting over $4500! If you are interested in giving, you can still do so here. Thanks!
I look forward to participating again next year. With a baby, and without an ileostomy.
It’s been awhile since my last real update. Healthwise, I’m doing pretty well. The stoma skin issues I was having have resolved (debriding agent and calcium alginate really works wonders), and I haven’t had any recent complications. But life keeps happening, and difficult decisions must be made. I need to have another surgery. My loop ileostomy is not a permanent solution and will degrade over time. Whether it’s another try at the takedown, or a reversal of the J-Pouch procedure and creation of a new, permanent end ileostomy, I need another surgery. The only real question is when.
For the takedown, the longer my J-Pouch sits dormant, the longer it will take to “wake up” and reach full functionality, which will mean more days and weeks of extreme discomfort (i.e., dozens of bathroom trips and no sleep) while it slowly improves. Then again, the takedown went really bad last time, resulting in an emergency surgery to reverse the procedure, so maybe it’s better to wait.
For the permanent reversal, the longer I wait, the longer I deal with a sometimes-finicky and not comfortably placed loop ileostomy (which has had a major impact on my wardrobe). Then again, those are minor inconveniences compared with the thought of a lifetime of an ileostomy of any sort. An ileostomy definitely better than being sick with ulcerative colitis, but I’m otherwise not a fan.
So what to do? Continue reading
Know Guts 