Well for starters, I’m alive. This is going to be a long entry, fair warning.
Surgery
Surgery went well as far as I know. I officially have a jpouch but its not being used. Dr. Remzi didn’t complete the whole thing which really bummed me out, and kinda of pissed me off but I knew that was a possibility. He said the surgery was still hard to do, for whatever reason, but he did it. I felt better after surgery much earlier than any other surgery. I was on oral pain meds really early, and I left the hospital on Monday after surgery on Thursday.
Surgery was at 7am Thursday morning, so I was recovering mid day. I didn’t want to kill my roommate until a few days in so that was a nice change. The nurses were all bitches. I find it totally ridiculous that after paging a nurse its acceptable to wait for an hour almost every time. Dr. Remzi only came to visit maybe 2 times for about 5 minutes each, that pissed me off. I was pissed off a lot because of the “service” in the hopsital. I wanted to punch all the doctors and nurses because they were all assholes. But I totally felt fine. I was walking on day 2, standing up straight, totally good to go.
Dr. Remzi did a plastic surgery closure on my scar. I haven’t seen it yet because its covered by steri-strips. I can see one stop thats already popped open, but Im keeping the strips on there for a while that way hopefully it doesn’t keep happening. I was just thrilled not to see staples. I got my PICC line like usual however I woke up with two additional IVs, one in each hand for a total of 3 ports. Then I itched my neck, and found it was sore, realizing then that they had also put in a central line in my neck. Holy hell. It was ridiculous.
So I went home monday, feeling great, ready to be done with pain killers, thrilled to be back with my puppies and sitting my ass on my couch while eating cheez-its and boost shakes. Thats my after surgery diet.
The Return
So Tuesday I went to change my bag for the first time by myself and I went in, got all my supplies, and it was all normal. I took the bag off, and the stoma looked a little sunken in, but I figured my belly was still swollen so that was ok. The ulcer I’ve had, had gotten bigger since surgery but I thought that might happen. So im looking at it in the mirror and I realize that the stoma is pointing down a lot. Weird. So I start to kinda push around and I saw that the bottom of my stoma was totally separated from the skin. I freaked the fuck out. Completely. It was terrifying looking. (Don’t look unless you can handle it). So I was literally telling myself to calm down, then I lost it. Crying hyserically, freaking out, again not knowing what to do. So I call Remzi’s office to talk to Vicki and I tell them its an emergency through my hysterics and I get told, she will call me back.
So I wait…and cry…and wait…for TWO FUCKING HOURS.
I called my mom, who literally could not understand me, and she left her first day back to work, early, to come to my house. We waited and waited and finally she called me back and saw the picture and basically said that I had to go back to the hospital. FUCK.
So angrily and reluctantly, we drove back to Cleveland after I had been home for 24 hours. I was so angry. We get there, get admitted and those asshole were asking me questions and poking me all night. Stoma nurses came the next day and looked at it and said I had a separation. It was fairly normal, but OF COURSE mine was really deep. They said that it was possible for it to happen in less than 3 days. So they filled it with stoma powder and a strip of aquacel. They said it should reattach with no problem, but it terrifies me. I had to wait all damn day but I got discharged yesterday after just one night. They wanted to keep me another night for no reason so I peaced out.
Tomorrow I have a home nurse coming to help me take care of it, because I can’t see it below my stoma and I can’t really lay down to deal with it on my own. Ugh. Seriously? I felt/feel SO good after this surgery, and it just seems like it was going too well. Something had to go wrong. So frustrating.
So anyway. I’m home. I still feel ok. I’m just a little scarred from seeing my skin totally separate from me. FML
I’m so sorry to hear what happened and I cried as I read it because I know exactly what your going through. My hole separated too and I have it happening on the other side as well and I still only have my first stoma. I’m so scared about my jpouch surgery and stoma! All they are doing for me is stoma powder.
I really hope you heal fast cuz I know how I’m horrified Everytime I have to change my appliance I’m so scared of how much more its ripping.
Hey Janelle,
I wanted to check on you and your separation? Mine actually surprisingly healing really quickly.
I used aquacel- and powder to heal it. If you don’t have aquacel or can’t get any, I can send you my left overs.
Let me know how you’re doing.
Also….this separation sucked, as you know, but honestly your first stoma in theory should be the best. Don’t let it all get you down.
I thought I could handle the photo, but I couldn’t. After seeing that, I would freak the fuck out too. You’re a stronger woman than most of us. For real.
Thanks friend.
Hey, Jackie, I know I’m posting on this a year after it happened, but I just had to comment. I just can’t believe how much you’ve been through with your complications. I saw your picture and I would have freaked out completely! I’m glad it healed pretty quickly! You are so strong!
Love your blog! Just wanted to let you know your link to your photo isn’t a link to a photo anymore it is a link to the app skitch. I downloaded the app but still couldn’t see the photo. ?