Day 49

    I haven’t posted anything in a while. I don’t have a good reason for not posting either. I guess I really have just been focusing on actually living my life now. I don’t know if it was because of my quick recovery, but I feel like I should have all this figured out and I don’t. But then I also remember it hasn’t even been two months since my surgery. Everything was jut going so well for a while in the beginning and now shit’s hitting the fan… literarily. I still haven’t gotten to order any supplies from anywhere, so right now I’ve been surviving off of starter kits that Hollister keeps sending, upon our request. I can’t seem to stop my leaks to save my life. Everything I do doesn’t work, everything my mom (a nurse) does doesn’t work, everything my ostomy nurse does doesn’t work! I have watch video after video and read blog after blog about stoping leaks, but every one of them says pretty much the same things. Use paste, use rings, use moldable paste, use convexity wafers, try this, try that. I feel as though I have exsausted all of my options. I made sure I wasn’t pancaking, I cut my wafer correctly, I use paste, I use powder, my skin is clean, I’ve tried adhesive tape on the sides of my wafer, I’ve tried rings and paste at the same time, I’ve tried applying pressure evenly around my stoma, I’ve tried cutting my wafer just big enough to fit my stoma (I gained a blister from that which hurts like hell), I don’t know what to do anymore and now more then ever I’ve really been questioning if I should’ve made this choice or was I better off suffering, but at least I wasn’t as stressed as I am now. N

    I think that’s why I haven’t posted in a while. Everything I post becomes negative. No good news to share. So I guess I’ve been trying to focus on the good things in my life. Anyway I said that I was leaving behind hospitals in 2015 so I am, 2016 will be a hospital free year for me. To my best ability I will stay out of hospitals this year. I’m currently looking into this all-natural stuff called Plexus. There is this package where I can get a dissolving powder that helps put nutrition, that I’m not getting in my diet, into my body through out the day, along with a probiotic that helps put good bacteria into my stomach/intestines and it also has an anti-fungal to help fight off any fungus or bad bacteria I have in my stonach/intestines, and a colon flush. It’s a capsule that I take at night and it helps heal and repair any damage my stomach/intestines might have and helps (naturally) remove any toxins that are in my stomach/intestines. So hopefully this package works well for me, because I could really use a win right about now. 
Hold on tight

ostomyliving

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Day 39

  
    Sorry I haven’t posted in a few days. I’ve been focusing on spending time with my family and medical stuff of course. I guess my whole life has always been medical, medical, medcial. But now that I’m older and understand what’s going on a little bit more I feel like it’s more intense then it used to be, but my kin says it’s always been this way and that our government consists of hard asses who don’t really care about your problems. I can’t say I don’t agree with her. This whole insurance doesn’t cover my supplies and then the fact that I’m turning eighteen soon and everything is going to get all screwed up again, it’s no fun. It ecspeaclly isn’t fun to have to deal with all this and then some at my age. I feel like I’ve never really gotten to be a kid or a teenager. Do you know how hard it is to act your age when you’re not? My best friend tells me all the time that I’m a twenty-five year old trapped inside an eighteen year olds body. Which is a blessing and a curse. It’s not easy having to deal with what I deal with every day. Not just my ostomy’s, but life things too. Like getting ready for college and graduation. Actually finishing school so I can graduate and now figuring out this whole insurance doesn’t cover my medical supplies from the company that produces it. Thank God for my mom, without her I don’t know what the hell I’d do. I’d be screwed without her. I also feel bad for her that she had to deal with so much too. My mom says that our government is run by a bunch of hard asses that don’t really care about “the people”, they just care about the number of zeros on their paycheck. I can’t say I don’t agree, but I’m sure there are good people in our government who stand up for people in situations like mine. Maybe that’s just a na├»ve dream. 

I didn’t intend for this post to be long, more of a quick little update. Over Christmas break I talked to my mom about finding a thearipist that helps a lot of young adults with medical issues. Someone that I can talk too and they understand why I’m so messed up. I’ve tried regular thearipist before, it’s always difficult to explain everything to them and they understand what you’re talking about. Let’s just say it didn’t work out and I haven’t seen her since. When I told one of my friends (casually) that I was looking for a thearipist he put his fork down and stared at me. I asked him what was wrong with looking for a therapist and he just kept saying how he didn’t know it was that bad and he apologized for not being there. I still don’t understand how that could freak someone out so much. I told him that I’m fine and that I see a thearipist as a neutral  person to talk to about struggles and difficulties that I face. He calmed down after that. I nah him about it all the time now. 

Well that pretty much it. I’ll write again soon!

Hold on tight

ostomyliving

Day 32

    Certainly the most frustrating part of having an ostomy, for me anyway, is the whole insurance battle. I mentioned this yesterday, I feel like I’m always is a battle with the insurance company. I’m on Medicaid and let me tell you, insurance workers don’t give a damn about your problems. They don’t care if you need supplies regularly, they don’t care if you’re having to wash out closed bags so you can reuse them. They don’t care if you’ve run out of barrier wipes. It so frustrating to hear an insurance worker say, “I’m sorry there’s nothing I can do, but you can just play for supplies it of your pocket.” They say this after looking at the income my mom gets. Which is hardly anything. Eighty-five percent of our income goes towards bills, food, gas, etc. I understand that they are just doing their job, but isn’t part of their job to help people get what they need

    So now because the supply company doesn’t take my insurance I won’t be getting any supplies for who knows how long. But that’s all I have to say. 

Hold on tight

ostomyliving

Day 31

    So I had my ostomy appointment today and it went very well. The ARNP, Kris, helped us figure out solutions to my little leakage problem. She was very pleased with how my stoma and my skin looked. Today when I pulled my wafer off to show her my stoma, my skin was red all over. When I saw it I kinda freaked out in my head, but tried to remain calm long enough to hear Kris’ opinion on the redness. When she saw it she immediately said, “Oh, yea your allergic to Convetec.” I was instantly relieved. I was about to beat myself up for not applying powder and barrier film correctly and now I had to deal with the skin breakdown. But when she said that I was alergic to the product my whole body relaxed. I thought, ‘Okay, this is no big deal, I’ll just stop using Convetec,’ but that’s where the shit hits the fan…

    The hospital ordered a bunch of stater kits from different companies for me to try out, so I had a good stock of stuff. Well that stock has run dry. I’m down to one wafer and pouch from Coloplast (one of the companies I didn’t like) that I’m not allergic too and then like ten pouches and wafers from Convetec. So that proves to be very difficult to properly take care of my ostomy. So as soon as my mom and I got into the car we called Hollister to order another starter kit so I could tie myself over until I got a real shipment of Hollister products. I couldn’t order my supplies yet because I needed a script from my surgeon, which I got today. 

    Now it’s the week of Christmas. So getting the shipment for the starter kit actually sent  may be very difficult and that also means that I won’t be getting my actual shipment of supplies until after Christmas, this is why I ordered the starter kit. So hopefully I can get my starter kit soon and get this Convetec wafer off of me. My skin is so itchy and red it’s beginning to be a nuisance. The shitty part is anything that will help my allergic reaction go away are all cream based. If you have an ostomy you understand why that’s shitty. Kris did say that just letting my stoma and skin breath for thirty minuets might help it go away. My mom also mentioned putting some anti-itch reliving cream on the area and leaving it open for thirty minutes or so and then making sure I clean my skin very well before placing another wafer on might also help. Leaving the cream to sit helps my skin absorbe the medicine and then washing my skin afterwards will cause the wafer to stick properly. So I’m going to try that and see if it helps. Hopefully boycotting my Convetec products for now will also help it go away. 

Hold on tight

ostomyliving

Day 30

    So it has been a whole month since my surgery and so far I haven’t had skin irritation or breakdown on the skin around my stoma, until tonight. The past few days I was noticing that an area of skin underneath my wafer was very itchy, I thought it had to do with something that was in the wafer. See I am allergic to latex and latex is common in most bandages, so naturally I thought the wafer had latex in it, therefore was causing the irritation on my skin. Because it was underneath the wafer I couldn’t see what the area of skin looked like, so I just decided to wait until I changed my wafer again, unless it became unbearable. Tonight as I was changing my wafer I noticed that the area of skin that was irritated and itchy had red bumps in patches all over the area. When I pulled the wafer off there was stool on the bandage part of the wafer right where that area of skin was. How convenient is this, getting skin breakdown a few days before I go in and see a nurse about stoping the leaks. Just my luck, this situation pretty much sums up my entire life. 

    For thoes of you who may not know, it is very common to get skin breakdown when you have any kind of ostomy. See your stool is very high in acids, acids can cause big problems because acids erode and breakdown sensitive surfaces. Now the stoma itself won’t have a breakdown concern because it is the colon, so it is already used to and protected from acids in the stool. However a surface such as skin, especially sensitive skin, has a very high concern for breakdown, because it is not used to any type of acid the acid begins to breakdown and eat away at the skin causing irritation, red bumpy patches, and an itchy feeling. I don’t know how to get rid of skin breakdown, I wish I did, but I do know of ways to prevent it. Now these preventions are not one hundred percent. First off like I said skin breakdown is caused by the acids in the stool eroding the skin, so in turn breakdown is caused by leaks (stool getting underneath the wafer). So if you can stop your leaks you won’t have anymore breakdown on your skin. But if you’re like me and still haven’t figured that out yet, stick around, we’ll figure it out together. 

    Okay so the first and most common technic is using, religiously, stoma powder and skin barrier wipes on clean, dry skin around the stoma and anywhere the wafer will be touching. These products together create a barrier between the skin and the wafer to prevent breakdown. It also creates a better surface for the wafer to stick to the skin when also combining stoma paste, creating a good seal is also a good way to prevent leaks and breakdown. Now like I said before this may not help everyone, in my case it worked four out of five times, but everyone is different.  The second technic is one that I have heard a lot about, but I don’t have enough experience to say it’s full proof. Barrier rings. Barrier rings act like a moldable ring of stoma paste, it creates a barrier between the skin and wafer and from what I’ve heard it is a great solution to preventing leaks. Now again I don’t have a ton of experience with barrier rings, I used one barrier ring once and it wasn’t a great experience. I had a big leak while wearing it. Now I believe in trying something new a few times before writing it off as invaluable to you, so I’m currently wearing one right now and I will update you guys on how it went for me. 

    If nothing seems to be working for you in preventing leaks then I suggest making an appointment with an ostomy nurse for help. I have set up an appointment with my ostomy nurse for Monday. So be looking for an update on that as well. Okay I will post again very soon!

Hold on tight

ostomyliving

Day 29

    So my entire life changed 29 days ago. I went into surgery November 20th, 2015 and frankly I like to call it an emergency surgery. A little back story for ya… So I’ve always had bowel issues ever since I was born. I was born with no muscle tone in my anus. Basically this means that I couldn’t get anything out on my own, but I also couldn’t keep anything in either, but more on that later. So I would get sick ever so often for a few days and be “fine,” so I thought. Now at this time I was on a regular regiment of Miralax (and over the counter non habit forming laxitive). Now the Miralax was starting to no longer work, I was getting sick more and more often. A month or so before I went into the hospital I was getting sick every other week. I remember it was Friday, November 6th that I started to feel sick, but I kinda shrugged it off because it wasn’t too bad. So I went about my life. That Sunday I went out with some friends to lunch and halfway through lunch I started to feel more and more sick. Being the embarrassed teenager I decided to not tell my friends I wasn’t feeling good and just wait it out until I got home. Through out the time that I spent with them I kept getting more and more sick. That night when I was home it hit me hard and I became really sick. So my mom had me run through the basic procedures: Miralax every hour, no food, enema if nothing is working. So by Thursday, November 12 I got absolutely nothing out so my mom took me to the emergency room. This entire hospital stay was very long and full of important stuff, so I’m going to summarize the stay now, but I will write the full version soon.
    So the doctors started me on the normal hospital clean out stuff with the NG tube and the enemas. Now I was in a lot of pain. Like a lot of pain. Some nights were 10 out of 10 in pain for me. Anyway do you know how horrible it is to have to take enemas when you are already in a lot of pain? It is legit hell on earth. Anyway, so by the third or fourth day my mom started talking about surgery and I was on some pretty big pain meds but I remember being very clear of mind when she talked to me about surgery. I want to stress this. I wanted this surgery to happen. I wanted this. I saw it as an opportunity to stay out of the hospital and pain and a chance to live a normal life, instead of being sick every other week. Because so much happened during my stay it all went by fast and it’s still kinda a blur to me. Here’s a recap: Friday, November 6th I got sick. I became really sick by Sunday, November 8th and I stayed in my bed until Thursday, November 12th when I went to the hospital. Wednesday, November 18th everything was final with my surgery and Friday, November 20th I had my surgery. From what you can see a lot happened in a short amount of time. I didn’t really have a lot of time to think about my surgery and that is why I call it an emergency surgery. Even now that entire stay was very traumatic and I’m still trying to process everything.
    So the surgery I had was a full colostomy along with a disimpaction through the rectum. Because I was impacted with so much stool my colon was stretched to four times is original size. Besides my stoma, having a flat stomach was a big change for me. I dropped three pant sizes just from removing impacted stool. That kinda gives you an idea of how much stool was inside of me. My surgery and post-surgery went pretty seamlessly. I was out of the hospital and home by that Monday (November 23). Adjusting to living with an ostomy bag hasn’t been a shock yet. I have a feeling it will hit me soon enough. I was already used to taking care of a stoma. I have a urinary stoma and have been using it permanently since I was six years old. Stoma care is different between the two, but at the same time still pretty similar. This is all still so fresh. Just trying to live a normal life is harder then I excepted. See my normal is being sick in bed every month or so for a few days. I haven’t been sick in bed since Friday morning. Now I have been struggling with some “second thoughts” and depression. Again I’m still trying to process everything that happened. I also have been having difficulty with my stoma wafers and it’s been very frustrating and stressful for me. I am seeing an ostomy nurse soon, so I will update you on everything that happens with that.
    I’m not completely sure why I’ve decided to even do this. To sit in front of a computer everyday and write about my life, especially my medical life with people I will probably never meet. Now I wouldn’t particularly consider myself a privet person, but putting so much of my life that I’ve kept secret for my entire life on the Internet is a little intimidating to me. Actually it’s really intimidating. That’s why I am keeping my name anonymous. I have had blogs in the past, a few actually. But each of those lasted about a week and weren’t anonymous which made it difficult to spill my guts, because I had so many people in my personal life read it and that is very scary to me. Right off the bat I’m going to say that I have very strong opinions on many things and I’m a very intense person, so be prepared for an intense blog ever so often, but I’ll try and keep it to a minimum. Also I want to be completely honest with my readers, so besides my name and other personal info I’ll be happy to be upfront and honest with any questions you might have for me. Don’t hesitate ask, please I would appreciate it. Because I want to be honest I want to keep this blog clean for any young readers that may be going through this stuff or just find it interesting to read. So I guess I’m writing this to possibly help others who feel the same as me and shine a different light on ostomy’s

One day at a time…

ostomyliving