Hey guys! I just wanted to post that I had a few surgeries this summer and this group really helped me a LOT,. Because I got so much out of reading everyone's stories, I thought I would make a small post to say THANK YOU and tell you I'm doing great! I was extremely nervous for these surgeries and put them off for almost a full year, but then with covid and no work (and my doctor's calling me a ticking time bomb of a disastrous blockage that would end in a permanent ostomy...) we figured, why not just get it done. I was terrified. You guys helped. I am doing great now!
I had my first surgeries in my early 20's, some very traumatic blockages situations, some burst gut emergency surgeries, lots of no-fun gut history. lots of scar tissue. I'm now 42, have a three year old kid (IVF, thanks scar tissue). I am in Los Angeles, my doctors are at Cedar Sinai, and are extremely good/ top notch.
I had a very small stricture about 5 cm from the top of my J-pouch, and a fistula that my doctors said needed fixing. These were causing a very bad anemia situation as I was bleeding from ulcers around the stricture. They said "it is the size of a pin hole and we have no idea how you are eating and passing anything". So at the end of July I had the first surgery; re-make the top of the pouch because stricture so close to it, fix fistula, create temporary ostomy. First few days I felt SO GOOD! Then some terrible luck, a burst stitch resulting in some unfortunate complications, and requiring emergency surgery to re-create ostomy, and re-open abdomen to clean up the mess, etc... Turns out was allergic to latex so was swollen in all sorts of places (ahem, places they put catheters- no fun). I got thrush in my mouth, and just a bunch of crap. (This part of the story really REALLY sucked! I lost a ton of weight, couldn't eat, NG tube, barfing, blah blah). This took a lot of time to recover from. I was very angry and upset about it all. I was not enjoying my ostomy time, it kept leaking, had complications with stoma, but.... it got better!
I had my take-down end of September. I read all the posts here about what to expect, and I was pleasantly thrilled to discover that I feel really great! After about a week I was able to poop no problems. I was still very tired, and was very careful about not lifting heavy things, or doing too much. I started eating well again, gained some weight back, and am still feeling great! I had a really itchy butt for the first month or so, but even that seems to be so much better. I will be seeing my GI doc about medications to prevent another stricture, and I am sure I will read this groups notes on all of that again.
THANK YOU!!!! I especially loved all the notes about what to bring to hospitals. Lip balm and earplugs! your own soap that smells good!
Also a huge thanks to the doctors and nurses at Cedars. xo
