Life with the ostomy was surprising liberating. After years of worrying about
flare ups and toilets, I was finally able to go out and do things. Of course, having an ileo, there are some considerations. Firstly, you’re supposed to carry an emergency kit consisting of all the items you would need if something happened. I never carry a handbag, just a wallet, so it was hard for me to bring supplies with me. I usually didn’t and luckily I was okay. I did however carry some supplies in my computer case when I went to the office, which is rare. I work from home - I was fortunate to be able to take very limited time off after this first step. I took the 5 days I was in the hospital, which I believe began on a Friday and I was out of the hospital Tues, back to work the following Monday. I’ve heard of people taking 6 or 8 weeks off with these surgeries, and I could see that being the case if you’re commuting and working long hours. My company was very easy on me, my workload wasn’t too much to handle, and I was able to take the time necessary to heal. I wish everyone had it this good in that respect. Another consideration with an ileo is, the bag fills up… sometimes with air, other times with output. In the beginning, it’s more often, over time it becomes easier. I always struggled with air in my pouch, as you can imagine, it’s not cute to have a bulge under your clothes. Sometimes I wouldn’t eat to avoid dealing with it, especially if I had a long day planned. I would also have to think about
clothes a little more. High waist was good, what can I tuck this pouch into? Will I have a bulge? if so, can I hide it? I found myself wearing a lot of billowy shirts. I had ostomy wraps that were very cute and covered by insurance but even with a wrap, a bag of air under your shirt is hard to hide.
The first surgery was hard on me, although perhaps you wouldn’t think so considering I was out in 5 days and up and about
a few days after that. I went alone to my first follow up one week after my discharge, drove myself, wasn’t on any pain medication… Everything was healing perfectly. I felt very lucky. At that point, I was no longer taking any medication at all. I was getting up once a night to empty my pouch and emptying a lot during the day – much more than I needed to. The time went by pretty quickly. I found products that worked for me and it was a piece of cake. I did whatever I wanted and life was good, so good that there was a time I questioned whether going on to the next step made sense. I was already so much better, I wondered if I could hope for more.
I saw my surgeon again a few weeks later. It was time to schedule step 2. This step was the most complicated. My surgeon’s scheduler set me up with the earliest appointment. I had to be at the hospital at 5:30am – I remember being concerned I wouldn’t be able to get an Uber car at that time. Everything was exactly the same as step 1 from my perspective. I checked in, got changed, had an IV started, talked to my doctor, met the anesthesiologist, saw my surgical nurse – she was the same for each step… I don’t remember too much after that. They wheeled me down to the OR, I remember laughing and joking with the nurses and then darkness. I woke up in considerable pain, as I had the previous time, but this time I knew what to expect. This time around, I had two drains and the same incisions I had after step 1. There was the stoma, the bikini incision, and now, two JP drains. The drains were just below the bikini incision. They were uncomfortable and made moving around more difficult but I knew they were temporary. I never had good luck with catheters and this time I was able to participate in a clinical trial to get mine out after a day. The first step I got it out quickly but I don’t remember exactly how long I waited.. maybe 48 hours. This time, I was getting it out the day following surgery. There are pluses and minuses to this approach. Firstly, if you remove it and you aren’t ready, you could have to have it put back. Secondly, if you remove it, you have to get to the bathroom on your own – going to the bathroom immediately after being catheterized is not easy. It takes some patience. I remember after step1, I sat on the toilet for so long trying to pee, to the point the nurse needed to see other patients and I was holding her up but I had to go badly and I didn’t want to miss the opportunity. Once it happens, it gets easier and easier each time. In my case, the early removal was a huge success. After three days, I was ready to go home. Again, I went alone to my one week follow up, drove myself and wasn’t taking any pain medication.
This time, I had a loop ileostomy. This is similar to an end but it has two
openings. You only see one of them. One end comes up from the newly built j-pouch and the other comes down from your small intestine. This one looked a little different, almost like a small dome. It was practically recessed. It was a little smaller in diameter, but I was able to use a lot of my cut-to-fit supplies. I needed a lot more supplies with this, rings, paste strips, two types of adhesive remover, powder... It was difficult to say the least. Funny thing, I donated most of my supplies but I kept the adhesive remover, that stuff is useful, even if you’re removing a band-aid – it came in handy after step three when I was wearing a band-aid over my stoma site.
Unfortunately I can’t say anything good about
my loop, it was a nightmare. On the positive side, I only had to survive 8 weeks with it, then I would get my butt back. Step 3 couldn’t come quickly enough. For these 8 weeks, I was having a really hard time. It was a huge contrast from what I dealt with living with the end ileo. The end requires very little thought and over time, it got easier, the output reduced, less gas, less emptying…
The loop was exactly the opposite. I never felt good. My blood pressure was extremely low, I would get dizzy if I stood up too quickly. I would sit on the edge of the bed or couch and stretch my limbs so I could get up without falling over. A few times, I nearly blacked out and I had to drop to my knees so I didn’t fall over. I was putting electrolyte drops in everything I drank, loading up on salt, avoiding alcohol and not eating too much, more food meant more output and I was already changing my pouch daily. Granted, I wasn’t changing daily because of output or food consumption, it was simply because I couldn’t figure out any products that would keep this thing contained for more than 24 or 36 hours. I would feel the dreaded itch/burn right around the stoma edge. With an ileo, an itch means output on your skin. Even though this was literally 1mm outside and completely covered by the wafer, it was uncomfortable and I had to change the whole setup. Every time I removed it, I looked to see where it was leaking and it was so minuscule, I was shocked that it caused so much discomfort.
With my end ileo, I was able to shower naked, take my time to change – I didn’t have to worry so much about
activity. I would know when it was going to be active depending on when I ate. Generally I could shower pouchless and do a change mid-morning or afternoon and have no worries about
output. With the loop, there was no safe time. A few times I hit the end of my patience. I would get the wafer on and then it would output on the wafer, I would remove it, do it again, same thing… I felt defeated.
Throughout all of this craziness, I had not thought about
the one magical and miraculous thing that was happening. My scale was broken and I hadn’t weighed myself. When I finally did, I nearly had my OLD body back! The figure I had my entire adult life, until I took prednisone. Not the figure I had after pred, when I lost weight, where I was still 10 or 15 pounds heavier than I was initially, it was my college/20s body. The figure I liked. The one I missed… I was back to wearing my old clothes – old clothes + billowy top, ha-ha. I never realized how much confidence I had lost because of the extra weight I was carrying. I was finally able to wear what I wanted. Even with the ileo, I wore skinny jeans and fitted tank tops, the only problem would be when the pouch filled up, which is easy to manage, you empty (or eat light) and it stays flat. At the surgeon’s office the nurse would say “You don’t have your ileo anymore”, she thought I was reversed. That’s how much you can hide the pouch if you really want to. I was just so excited to be petite, I wanted to wear the clothes from the depths of my closet that hadn’t seen the light of day in YEARS – so I did (and I still am).
Co-moderator: Ulcerative ColitisDiagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!