Picture above is me holding the ostomy “medi-gel.”
After I was released from the hospital, I had a very rough day. Master had to go back to work, and he left me with a cooler that had some clear protein drinks in it and some Pedialyte by the couch in the front room. Whenever I am recovering from surgery, or when I’m seriously injured (broken bones, etc) he has always pulled out the couch for me. It allows me to be closer to the kitchen, bathroom, and actually.. Him! Bed rest for me usually translates to “couch” rest.
That day was just terrible. My pain was uncontrolled and I have a high pain tolerance to begin with. I was in so much pain and having so much difficulty getting around (even with my walker) that I was unable to get all of my medicines at the right times, and I couldn’t always get to the bathroom when I wanted. Not that this resulted in accidents or anything like that, just one sick, tired kitty who needed a lot of help and medicines when her Master got home.
The next morning I woke up, and the barrier ring the nurse put around Gob swelled up a lot. It was so swollen it was blocking Gob and I didn’t have any output. That’s serious and it could lead to complications. I had no clue what I was doing so I called up the nurse I saw in the hospital, who is the hospital’s ostomy nurse. She was very nice, but she told me I was going to have to change the bag, and she also told me that I was going to have to do it immediately. I started crying and told her I had no idea at all what to do. She told me that there was a color guide explaining it all in the big bag of supplies she gave me and that she was going to wait with me on the phone until I got all the supplies together before I started to fix it. She was encouraging and told me that it takes a lot of practice and not to beat myself up if I got it wrong. Then, we got off the phone.
The next three hours were excruciating. I hung up and just started crying because I was so overwhelmed. The color guide? It was totally bogus, and didn’t actually say too much on it. It only shows you how to use the barrier ring. I already knew that part. It took me two hours to get everything unstuck because I didn’t realize I had adhesive remover wipes in my ostomy supply bag (I mean really, no one had explained these things in detail and I only barely saw what was being done to me previously.) Once I got things unstuck, I noticed that my ostomy was shaped funny. The guides and YouTube vids I saw definitely looked nothing like this. I was at a complete loss and I really didn’t know what to do! I cleaned it very slowly and carefully, and by some miracle I got the barrier ring on and then put my wafer and bag in place. Then, I fell asleep because I was completely exhausted.
We got a call from the nursing care place saying that they were going to come out that Saturday to help me learn how to change my bag. Great. That was my biggest struggle. The pain was out of control, but overall I wasn’t all that worried about it at this point because my meds took the edge off, and it was getting a little bit better every day. I knew sooner or later it would go completely away. We were told to expect a phone call in the morning from the nurse with a time estimate on when she would be there. I double checked to make sure the nurse who was coming out knew about ostomies, as I was previously warned to do. They said that yes, she did, and I hung up feeling a bit more confident about the whole thing.
Saturday came around and we didn’t get a call in the morning about when we were going to be seen by the nurse. About quarter past noon, I called the nursing company myself to make absolute sure that they would be coming. Since leaving the hospital I had to change my bag every day at least once, and we were noticing problems with Gob since we came home. We needed to have the nurse see me. About ten minutes after we called checking up on the nurse, she called us to say she would be there between one and two. Great!
This nurse seemed like she knew what she was doing. She was really nice and teased me a bit about all of the stuffed animals in my bed.
“How do you even fit in there with all those stuffies?” She laughed. I thought we’d get along.
She told us a lot of things. She showed us a faster way to remove the wafer (try rubbing the adhesive remover on top, not the sides!). She told us not to use a ring at all, since I wasn’t having any problems with leaking. She told us not to use a real towel, and she told us to buy unscented baby wipes. Great! We felt like we learned a lot. She said she would be back on Wed to watch us do it ourselves, and she also told us that after that if there were no issues she would be happy to discharge us. Nice.
Well, I had issues with the bag the next day. I’ve never dealt with leaking outside my bag, but the hole Gob comes out of seemed to get bigger every single day, and so the bag kept having to be changed. I called up the nursing company and asked if they could send someone sooner than Wed because my pain was increasing and we were having serious issues with having to change the bag constantly. For those who have no experience with ostomy bags: they are supposed to stay on for up to seven days, but at least three to four. You should definitely not need to change as often as I was unless there is a problem. The nursing company said they could not get anyone back out to me sooner than Wed so I tried to hang on.
Meanwhile, every single day the problems we were having were getting worse. We tried using the rings, different bags, change more often, changing less often, different skin preps, etc. The hole continued to get bigger and I actually started passing lots of blood in my bag (Not a drop here or there which is normal, and not spaghetti sauce or something. Actual blood.) and both me and Master panicked. I was getting more and more lightheaded by the day and we weren’t sure if it was related to all the blood I was passing. Still, we stuck it out until Wed.
I didn’t get a phone call by noon on Wed, so again, I called up the office and tried to find out what was going on. They told me that was my nurse’s day off and that she would be there on Friday. I advocated for myself as best as I could. I said I needed help really badly. Something was wrong. I had to be seen. I had no idea what to do and things were getting worse. They apologized, but said there was nothing they could do and that my nurse was coming by to help me on Friday.
That answer did not sit well with Master at all, so he called up himself. He told them they had to send someone immediately. Anyone. He told them he was seriously concerned for me and we had already been waiting days and I had a fever. That got their attention and they compromised by having a nurse call me on the phone to talk to me. This nurse, hereafter known as Nurse Expert, called Master and recommended he take me back to my doctor. My doctor doesn’t do emergency appointments though and so I had to wait.
Friday morning came, and again I had no call from the nursing company. Meanwhile, the problems were getting much much worse. The pain was ramping up, and I just honestly was not getting better. This felt like a major backslide. I, again, called up the office and told them I had not received a call from my nurse and that I wanted to know when she would be coming by. They told me they didn’t have me on her schedule at all that day, and that she would be by on Saturday. I was so upset I started crying right then. I begged them to send someone because I badly needed to be seen. Things were getting completely out of hand, and that was why I had a nurse to begin with. They said they were sorry but they wouldn’t budge at all. I hung up the phone and cried, then I called Master.
Master was completely ripshit, and he called them all fucking day on and off begging them to send someone and trying to reason with them. I only just had this surgery and I was supposed to be visited more often than once per week. They kept giving him bullshit replies and he had to run out on his lunch break to get adhesive remover for me so at that point he had all but given up. With no other resources available to me (you really can’t go to the Emergency Room for an ostomy, they have no idea what to do with them) I gave in to desperation and called the hospital ostomy nurse who had seen me while I was inpatient. She was livid.
She could not believe that I had received one visit in over a week and she told me she was going to hang up, and then call the company, and then call me right back. My night in shining scrubs! Finally, we were getting nurses from the company returning our calls. I got a call from three nurses I had never spoken with before, all offering to come out on Saturday. Then, my original nurse called me back. She apologized for “not seeing me in the schedule” and offered to come by that second. YES PLEASE. I hung up the phone with her, right as Master walked in the door from work and I told him we finally had a nurse coming to help take care of me. He was thrilled.
Not five minutes later that same nurse called me back and tried to get out of it. She had a bunch of bullshit reasons too “If I come out today, the other nurses can’t come tomorrow.” We told her we didn’t care. It was fine. Why would we need to see a nurse tomorrow if she came by today anyway? She relented and came by.
When she came by she was really upset and gave us the third degree. The first thing she said is “Why did you let this get so bad?! You should have called me.” I was pissed. I have been calling and begging her to come back all week. Don’t fucking pull that shit with me, lady. Then she said “You know, I’M supposed to be your nurse. You made me look bad because it shouldn’t have gotten so far.” I was polite, but honestly. No. SHE made herself look bad by letting me get so fucking sick and letting Gob get so hurt.
After she was done scolding us, she looked at it, and was kind of shocked by what she saw. She told me I’d better lay as flat as I could that night, and that I should go to the ER first thing in the morning. She said the skin around Gob was tearing every single day and that was why it was so huge now. She said that I needed surgery to have him repaired. I felt stressed out, but when she left I just tried to get comfortable and accepted my ER fate. I wasn’t pleased about it at all though.
A couple hours later, I got a call from Nurse Expert again. She asked what was wrong. I told her not to worry, the other nurse had come by and I was going to the ER in the morning. She insisted I explain the problem. I did. She told me not to go to the ER until she came by. As it turns out, the other nurse I saw was not actually ostomy certified, and while she knew how to change a bag, she didn’t know how to do advanced things. So, I happily accepted Nurse Expert’s advice and we waited for her to come the next day. We reasoned that even if Nurse Expert came by and wanted me to go to the ER, it wouldn’t put us that behind schedule since she was going to be at our house around 1PM.
The next afternoon, she did show up. She brought a huge bag full of supplies, and she went about starting to do her thing. Ouch. I was in tears convulsing on the bed. The Agony stick has nothing on a Q-Tip in the hands of the right nurse! Nurse Expert says that I popped a stitch at some point, and that was why my ostomy wasn’t healing right. It could easily have been when that aide had me walk only a few short hours after surgery. It could also just be due to my soft Ehlers-Danlos skin (maybe a bit of both). Either way, when the stitches don’t hold, this happens. It looked terrible, and it felt terrible. She ran some liquid stuff all around the outside of the wound and she packed some special stuff inside the wound too to absorb output so that hopefully the output would stop splashing in the wound making things worse. She put a barrier ring in there and put some special shaped skin barriers in there as well. I was in quite a bit of pain when she left, but it felt a lot more secure. She told me I had better call my doctor and see her on Monday if I could, but if they didn’t have an emergency appointment for me that my normal appointment on Tuesday would be just fine.
Unfortunately, there’s not a whole lot you can do for this problem. My surgeon may want to wait and see if the new liquid stuff helps (it’s honestly kind of like Medi-gel from Mass Effect. It forms an invisible barrier on the skin, and stays there while the skin heals) but if it gets worse (and it has not been helping much yet) then the only other option is surgery to repair it. If we have to revise Gob, it’ll have to be open surgery instead of laproscopic and the healing times will undoubtedly be longer, but at the same time, living like this is not an option. She said that at the two week mark most patients have no pain. I only have pain because each day my skin continues to tear making the wound bigger, and the wound won’t heal with output constantly pouring in because output is so caustic. Just my freaking luck. She left us with some very expensive supplies in case we needed to do a change without her.
She also told us never to use baby wipes and to always use a real towel because you don’t want the chemicals from the baby wipes on your wound or the fibers from a tissue in there. Thanks, nurse number one for giving us bad info!
So she left, but she gave us her personal cell phone number in case we have any issues at all. She said not to be afraid to call her if need be. We had to call her about six hours later, in fact. My ring had swollen up a lot and was blocking Gob again. She didn’t call back (I don’t blame her, it was kind of late) and I tried to just sit and deal with it, but it got so bad that I was in tears around 1AM. Around 2AM, Master made the decision to try to take the whole thing off and start again.
This time it hurt so badly that I cried hysterically throughout the whole process. Even just cleaning it hurt so fucking much that I was shaking. It took us two hours to get the whole thing done when it usually takes much less time. I didn’t even think we would get it done, but we finally did, and I think I got to actual sleep around 4AM. It was awful.
Master called the nurse again straight away first thing in the morning, and she called him back. She said it was her day off but she’d be happy to come by and help again. I was terrified of all the horrible things she could do to me, but I didn’t have any more of the special supplies I needed so I saw no other choice. As a thank you for coming out on her day off, Master ran out super fast and got her a $25 gift certificate to Starbucks.
She had brought a new type of bag, more of the “medi-gel” and more of the stuff to pack into the wound. Surprisingly, things hurt a lot less today, though I won’t lie, there were still tears. I’ve also got a slightly bigger wound again. ::Sigh::
Tomorrow I’ll call and see if the surgeon can squeeze me in at all. I really hope she can. I also really hope I don’t wind up needing more surgery. After the way this one has gone, I’m not too keen on having more.
It just makes me so mad that this could have probably been prevented or lessened if I had a nurse here sooner to catch the problem before it got so overblown. We might have fixed it with the medi-gel when it was just a small hole instead of waiting until it needed surgical repair. You never know, though. Maybe the surgeon knows something the nurse doesn’t.
I really hope so.