In August of 2013 (when my son was 5 months old), I had the first of three J-pouch surgeries. My UC was out of control, and my GI basically told me there were no drug options on the horizon.
I was exhausted. Tired of fighting, and tired of missing out on my son's life. (Tired of missing out on my own life!) By the time I met with the surgeon, I was begging to get on his calendar. I was sitting in his office on a Wednesday, and he told me the surgery could be scheduled the following Monday. I couldn't hold back the tears of relief. After 13 years of struggling to avoid surgery, I was now desperate for it.
The first surgery was a total colectomy which left me with an ileostomy. Because my disease was so severe and I'd been on high doses of prednisone for so long, I had many, very painful complications. Immediately after the surgery, I felt great. I ate within a couple days, and things seemed great. But on the third day, everything stopped. Dark green liquid poured from my stoma, and I was constantly emptying my bag. Sidenote: waking up with an ileostomy--and the bag that goes with it--was not as traumatic as one might think. I was so relieved to be done with my colon, it was actually more fascinating to me than anything. A real medical miracle.
Anyway, something that was NOT a miracle was all the sh** that hit the fan next. Blood clots in my liver, an abscess in my pelvic area, and then a paralytic ileus which brought everything to a screeching halt. In three days, I had more CT scans and pain than I ever thought possible. But then it ended. Recovery was far more difficult and lengthy than I imagined, but about 6-8 weeks after surgery, I was starting to get into the swing of things.
Waiting for the Second Surgery
Because of the blood clots (and subsequent blood thinners), my second surgery had to be delayed by 3 months. Usually the second surgery is done 3 months after the first, but mine was 6 months later. I wasn't eager to go back under the knife anyway, and life with the bag was easy. I did swimming lessons with my son; really, nothing was restricted with the bag.
Swimming with my son while sporting a bag. Just wore a one-piece, and it was inconspicuous.
After the Second Surgery
The second surgery was uneventful. They constructed the j-pouch, but diverted my intestine so the pouch had time to heal before being used. This significantly shortens the digestive tract which meant nearly constant dehydration. Recovery was easier for me than the first go-around, because I didn't have complications. I now had a "c-section-style" scar, a couple lapro scars, and a stoma. My tricks to staying hydrated were:
- 8 immodium a day (one first thing, two with breakfast, two with lunch, two with dinner, one at bedtime)
- Metamucil cookies
Regardless, I did have to go to the ER for IV fluids once during this time.
I also experienced leaking around the appliance because the stool was so liquid-y, and the stoma didn't stick out as far as my first stoma. I switched to a new appliance (with convexity) and that helped, but it was still annoying. But anything can be tolerated when you know it's temporary.
I was terrified of this surgery. I had been so comfortable with the bag, I was dreading the return to the toilet. Doctors cited "diarrhea, leaking, pouchitis" among the potential possibilities, and I just didn't see how that was better than having UC.
But once the third surgery was completed, I got it. Yes, I'll have "diarrhea" forever, but it's not how I imagined (or experienced) before. It's almost exactly like peeing, just out of your butt. Just like peeing, you feel like you have to go, but you can hold it for hours. Here are the (kinda) annoying issues post surgery:
- Everytime I pee, I sh**. Everytime. And it is diarrhea, so it can be...noisy.
- For the first 4-6 months, I was waking up multiple times per night to go to the bathroom. Then around 6 months, things really seemed to heal and now I usually can sleep through the night.
- Butt burn is real. So real.
- I have some MAJOR scars. The stoma scar was left open because it's not a sterile wound and would get infected if closed. During the weeks following surgery I kept ripping it open (lifting my son, etc), and now it's a jagged mess.
- Mysterious lower back pain. I have no idea what this is (maybe leftover from the abscess?) but when I stand after sitting, I feel like an old lady. It dissipates quickly and doesn't impact my life.
But in the end...
I am eternally grateful for this surgery. I can't believe I resisted for so long. When I look back at this blog and see everything I did, the drugs I took, the food I didn't eat, the risk to my son while I was pregnant... The surgeries weren't the nightmare I had imagined.
My absence on this blog shows that I almost never think about UC anymore. For so long, it felt like my strongest relationship was with Ulcerative Colitis: it was my all-consuming partner. My life now is about being a mom to my toddler son, a wife to my caring husband, a friend, a sister, a daughter.
If you're reading this and have ANY questions, or just want to connect, please, please get in touch. If there's anything I can do to ease this road for anyone else, I would be grateful.