I’ve had my colostomy since 2005 and I’ve adapted pretty well to it. The only issues I’ve had with my ostomy is in the summer time and the warm weather. Most of the time I can get about four days with the ostomy appliance while changing the bag every two days. Once the warm weather starts is when I tend to run into problems. The heat plays havoc with my colostmy. I find I tend to leak a great deal with the warm weather. The last two weeks have been an issue for me, I found myself changing multiple times a week instead of the usual two times. I found myself leaking constantly through the appliance, on a couple of occasions I had to change the appliance two times in one day, I just couldn’t get a good seal with the barrier rings, it seemed my body heat caused the to melt down against my body quicker than normal. Talk about being frustrated, there’s nothing worse than getting finished done changing only come to find out your leaking through the appliance and you have to do the process all over again. I think it’s finally starting to get better, perhaps it’s just the initial reaction every year to the heat, because it seems I have this issue every year once the warm weather kicks in. I also though it could be from the weight loss I’ve had. My stoma is below my skin level so I use an appliance with convexity, the weight loss could be causing issues making it more difficult for me to get a proper seal around the stoma. I’m hoping I have the leaking issue taking care of, because it’s been a real pain in the ass having a colostomy as of late…
For those of us who have an ostomy, there may be certain items your insurance company will not pay for, for me one of those items is the no sting liquid bandage which many of us use. When I first got my ostomy back in 2005 I couldn’t believe how much the medical supply companies were charging for a small bottle of the liquid no sting bandage spray, it was like highway robbery. I was paying close to twenty dollars a bottle of 3M Cavilon no sting bandage spray. Depending on how often you have to change your appliance the cost of the spray can add up quickly. I made it my mission to find a cheaper alternative to the high priced version. Low and behold after about thirty minutes on the internet I found one that was not only cheaper but it was made by the same company, with pretty much the same ingredients. You see, 3M has a product for sale marketed to the general product under the Nexcare brand, and it works wonderful, just as good as their Cavilon brand which seems to be available through a medical supply store.
The bottles are about the same size with the Cavilon brand spray containing 28ml, where as the Nexcare brand contains 18ml. It seems to me that they are trying to take advantage of those with ostomies and medical issues by trying to market the more expensive product to us. Granted you are getting more liquid spray in the Cavilon brand, it just seems crazy to pay for the more expensive product when there is an alternative from the same company. Recently a few months ago I started to purchase the Nexcare no sting liquid bandage through Amazon, I’ve been getting a package of three for about fifteen dollars which is still better then paying twenty dollars for one bottle. I’m sure if I shopped around online I could probably find even a better price for the spray, there’s always someone with a better price. It’s just very discouraging how companies charge differently for their medical products. They seem to want to charge a higher price for those who use these products more often, but charge the general public less for pretty much the same item. So if anyone has an ostomy and is looking for a cheaper but just as good no sting liquid bandage spary please check out the Nexcare no sting liquid bandage spray by 3M.
Having a Foley Catheter in for as long as I have had has caused some unfortunate issues over the years for me. One of my main issues has been the constant urinary tract infections and bladder infections. Without fail I would get at least on UTI a month which was too much for me to handle both physically and mentally. I would drink a glass or two of cranberry juice a day to no avail, the infections kept on coming. As I started to diet I was worried about my carb and sugar intake which we all know, cranberry juice is high in carbs, and being on The Atkins Diet, cranberry juice would have consumed a good portion of my daily allotment of carbs. So I decided to do some research on a cranberry supplement that wasn’t loaded with carbs and I came across the CranRich brand. The reviews on this product were great and it was nice to know there are other people out there who don’t have spina bifida but who are experiencing UTI’s and bladder infections. Many in the spina bifida community I’m sure have experienced the same issues that I’m going through in dealing with these issues, and I’m sure many have turned to cranberry juice.
I have to say after roughly three months of taking 1000mg of CranRich, that’s two pills a day, I have not experienced any bladder infections or UTI’s, which is news to my ears. It has helped immensely in cutting down on doctor’s and emergency room visits, some months for me I’d end up having to go multiple doctor’s visits a month because the infection were not getting better. The pills are an extra concentrated formula which gives you a greater amount of cranberry into your body. I don’t think you could drink enough cranberry juice to equal the amount which is contained in the pills. My urologist even commented that he hasn’t heard from me concerning UTI’s and bladder infections and I told him I started taking a cranberry supplement and he told me to keep up the good work. I’m happy I found something that worked while not effecting my dieting program, I get the necessary cranberry supplement without wrecking havoc with my diet. I plan on keeping on track with my two 500mg pills a day, which I take in the morning and at night to help my bladder and urinary tract, I’m hoping that all my fellow spina bifida compatriots have found something that has worked for them, whether it’s by drinking cranberry juice or a cranberry supplement, as we all know dealing with bladder infections and UTI’s sucks big time…
Back in January I made the decision to really make an effort to lose weight. Ever since I stopped working and had to go on disability I gained more weight than I wanted. For a brief moment and I mean a very brief moment, I considered having bariatric surgery to help me lose the weight. What changed my mind was going to the bariatric seminar at a hospital in Boston.I’m not one who enjoys having surgery and after reviewing the options I decided I would really buckle down and go on a weight loss regime. The options for surgery looked quite dangerous to me, more dangerous then anything I’ve gone through with spina bifida. It seems with me, I’m the person who is in that small percentage where complications arise and I wasn’t to thrilled at hearing of the possible complications associated with having bariatric surgery. I chose The Atkins Diet because I followed something similar years ago and had great results. The best part was I maintained a good weight for about fifteen years, until my artificial urinary sphincter failed (this was the third one) and my urologist decided a Foley Catheter would be best.
Initial weight loss on Atkins was amazing losing around twenty pounds in a few weeks, keeping my carbs between 18-22 grams per day. I kept my carbs pretty low for about three months, which at that point my primary care doctor suggested I increase my carb intake slightly. Currently, I’m taking in around forty-five grams of carbs per day mostly in the form of leafy green vegetables and berries, with the occasional protein bar thrown into the mix, usually a Quest Bar or an Atkins snack bar, both bars are relatively low in net carbs and the taste good.
So far I’ve lost about thirty-five pounds since January, I’ve started to incorporate more cardio into my workout which is twenty-five minutes four times a week, this has been great with helping to take more weight off. This weekend I plan on to starting lifting free weights which I have in my basement and I’m hoping it will accelerate the weight loss even more. I try to give myself one cheat day a week, nothing real crazy, just enough to try to trick my metabolism so it doesn’t get to stagnant. While the weight loss will be great for my over all health, it will help greatly in healing for the surgery which is the main reason for for me dieting. I still have a little ways to go, I feel I’m on the right path…
A few posts ago I wrote about how I’ve started using cane for long distance walking and that I had placed an order for a wheelchair. Well, I’ve found myself using the cane more and more, not around the house or anything but when I leave the house to do errands. Granted, the cane does help me with my balance and keeps some weight off of my hip which has been giving me problems as of late, arthritis and bursitis will do that to you. For forty-five years I’ve managed to walk on my own without any assistance of crutches or a wheelchair and this year has changed all of that. My wheelchair came in a few weeks ago and I’ve already have used it a few times, once to go to the Christmas Tree Shop with my mom and once to go see my grandmother in a nursing home, even with my handicapped plate on my car there’s still a great dealing of walking around in those places. I think it just bothers me knowing I’ll be needing assistance when I walk pretty much from now on, not exactly what you would call a big confidence booster.
As far as the hip pain goes, my orthopedic wants to limit the cortisone shots to twice a year, and I’ll be making an appointment sooner than later considering the pain in my hip is starting to bother me even when I’m sitting down writing this blog post. The last time I got a cortisone shot it only helped for about 3 months, I’ll probably have to start using an ice pack and a heating pad to help manage the pain. My self-confidence and self-worth have taken a beating as of late as I’ve had to rely os assisting devices to get around. I’m not sure how this is going to play out, I’m hoping I become less self-conscious about using a cane and wheelchair especially since they are helping me. We’ll see…
In 2008 I stopped working and had to go disability, not by choice mind you its just my body was starting to break down on me, preventing me from continuing to work as a chef. In that time I’ve had countless surgeries, got my bachelors degree, many emergency room visits, ambulance rides and hospital stays. Cooking was my passion,I did for over twenty years. While I still do cook at home, my hip and leg issues have prevented me from doing it professionally.My dilemma these days are what the hell am I going to do once I have the surgery that I need to have. It seems I need to find a new passion for the second act of my life. Lately I’ve enjoyed doing photography as a hobby and writing as I’m trying to write a novel with the main character having spina bifida. I’m really not sure where these to interests are going to take me. While I love photography, sometimes it’s just not feasible as I have a hard time walking and to get the best pictures or the ones I want to take requires me to do more walking than I’m able to. This requires me to take multiple breaks so I can give my legs and hips a rest. I’m a pretty determined person so I think I’ll manage to find a way to continue doing photography even if it will cause me some discomfort, I’ve spent too much time cooped up in my house as a recluse feeling sorry for myself. I enjoy finding places to photography and creating visually appealing photos. While I know I have a long way to go, I think I’ve made much progress since I bought my first DSLR six years ago. I’ve even have printed several photographs onto canvass and have them hanging in the house. I’ve started to become more active on Instagram and 500px where my photographs have been exposed to a wider audience. The upcoming spring and summer should be a great time for shooting and as long as my health holds up and doesn’t give me too much problems, I plan on trying to take as many photos as i can a build up my social media audience. To look at my small portfolio on 500px the link is https://500px.com/chadstraw
Last fall I had three thyroid biopsies done on three separate nodules, two come back negative and the third was inconclusive due to the fact my doctor didn’t get enough of a specimen during the procedure. So yesterday I went back into the hospital in Boston to have that third nodule biopsied once again and honestly I wasn’t looking forward to it. If you haven’t had a thyroid nodule biopsy, it’s quite painful and uncomfortable. I more or less had to get myself in a certain mindset to have this done again. The process involves going to ultrasound and the ultrasound tech does their thing and analyzes the three nodules. Once that process is done the two doctors come in, one is the radiologist and the other is my doctor the endocrinologist who performs the procedure. The radiologist uses the ultrasound to find the exact spot of the nodule to biopsy, they then make a mark on the neck for my doctor to use as a guide to draw the specimens for the biopsy. This involves having four needles go into the front part of your neck. The first needle is the numbing medication which is lidocaine. My doctor then inserts three separate needles into the spot where the radiologist marks and when he hits the right spot he moves the needle around so he can get a specimen for the biopsy. The first three needles weren’t pleasant, especially when he has to move the needle around which is inside of my neck. The forth needle was the worst, he hit a really sensitive spot which was extremely painful which was made worse when he moved the needle around. I’m hoping that this time enough specimen was taking to get a good result for the biopsy. Needless to say, I did not sleep very well last night as my throat hurt from where the needles penetrated, especially when I swallowed or moved my neck. I’m hoping in a few days the discomfort will go away and I’ll be back to normal.
Walking up and down stairs has become pretty difficult for me over the past few years, so much so as I moved my bedroom downstairs. The only time I have to go upstairs is when I have to take a shower. Well last month we installed a chair lift, another hit to my ego. Every time I see a television commercial advertising a chair lift they always have an elderly person riding up or down on the chair, it’s never a young person. I have to admit the chair lift has been a life saver, no longer am I struggling to walk up or down the stairs, I just buckle myself in and up I go, or down I go when I have to come back down.I guess it’s all part of living with spina bifida, we just have to roll with the punches and try to live our lives to the fullest, which is sometimes easier said than done. I’m just dreading the day when I’m going to need a wheelchair full time, I know I probably shouldn’t think like that but I’m always thinking about the negative aspects of having spina bifida. Maybe that’s why I’ve been in such a funk for the past two months…
It’s been a few months since I last posted on my blog and I wished I posted more often.I think my health issues just have me in a funk and I don’t know if sitting at my laptop writing about it on my blog will actually make me feel better. In my last post I mentioned that I was on the Atkins Diet and that I had lost fifteen pounds. Well, it’s been three months now and I’ve lost a total of thirty pounds and I couldn’t be more happier, my clothes are starting to get loose and I’ve been able to stop my blood pressure medication. I’ve been pretty strict on the Atkins Diet, perhaps too strict, as I did the induction phase for over two months. Recently, I started to introduce more carbs into my diet slowly, going to roughly forty carbs per day instead of the twenty in the induction phase. I plan on trying to exercise more on the stationary bike I have in my basement and try to implement some free weights into my weight loss program. I’m hoping this will ignite more weight loss as I’ve been somewhat stagnant for three weeks now with not much weight loss, though I haven’t gained any of the weight back. There are foods I thought I would be craving like bread and chocolate and honestly those cravings have not been there. My goal is to lose more weight with the implementation of cardio and some free weights over the next few weeks and months.
I have to say living with spina bifida can be extremely discouraging at times. My legs and hips seem to get worse as I get older. Recently, I decided to start using a cane for long distance walking. Honestly, I didn’t want to do it but common sense overcame my bruised ego. When I thought about it, using a cane only made sense. My balance isn’t what a normal persons balance is, as anyone with spina bifida can attest to. I’ve also placed an order for a wheelchair so I can get out and do more things like concerts and sporting events. It’s just too much walking for me even with a cane if I want to got to a concert or a sporting event. At times I feel I’m slowly losing my independence and I’m not happy about that, it’s got me in this rut and I’m having a hard time pulling myself out of it.
The book which I’m writing is coming along, though I’ve taking a few weeks off from writing due to me being in this funk. It’s hard to get excited about writing when I’m using personal experiences for the main character, it just get me down after I’m done doing a writing session. The first draft is at 35,000 words and I still have a way to go. I just have to get in the mind-set to start writing everyday, sure it might get me down writing about spina bifida but it may provide me some therapeutic relief by putting my thoughts down on paper. I’m sure once I have the first draft done I’ll be somewhat satisfied. The battle continues…
So here I am starting my third week of trying to lose weight. Honestly, it
hasn’t been that bad. I’ve lost weight before many years ago, but over the last eight years or so, I’ve gained a bit back. Ever since I stopped working and had to go on disability due to my health issues my weight has creeped up. I chose the Atkins Diet this time around, I’ve cut down on the carbs drastically. The Atkins Diet allows you between 18-22 Net Carbs in the first faze and I have to say I don’t miss the carbs all that much. Before I was tracking everything on My Fitness Pal and I was averaging between 120-160 carbs for the day, so as you can see that’s a drastic reduction from then and now. I don’t find myself hungry at all as I consume about 200 grams of protein a day between food and protein whey powder. As far as protein powders are concerned, I have been using Syntrax Nectar Whey Isolate Protein, I find they offer great flavors which mix up well. Best of all, there is no carbs or sugar and it offers 43 grams of protein per two scoops, which is very good, and it digests very well.
In the near three weeks I’ve been on the diet, I’ve lost close to 15 pounds. My clothes. are starting to fit better and I’m capable of wearing some clothes which were a little bit snug before. I’m hoping I can keep up with this as I need to lose weight for a surgery, Ileal Loop surgery to be exact, which would help with all of the bladder issues I’ve been having and that would mean that I could ditch the Foley Catheter. Fifteen ponds is nothing to sneeze at in roughly two and a half weeks, I’ll take it. This week I’m going to try to ride the stationary bike a little more, I love riding the bike but lately my right hip has been giving me some trouble. I’ll just take some Motrin to help with the pain. If anyone else is trying to lose weight this year I wish you well and hope things work out. I invite you to please leave a comment below in the comment section if you would, or send me an e-mail. It’s always great hearing from other people with spina bifida. Take Care……..
Well I hope everyone had a great Christmas/Holiday and a Happy New Year, hopefully everyone who visits this site will be healthy this year, which is hard for those who have spina bifida and their loved ones. I finally put my mind to it and started writing a novel, fiction of course about a teenager who is going through some tough times, and yes he has spina bifida. The working title is the same name as this blog ” I am More Than Just Damaged Goods”. I’m going to post an excerpt from the book, remember this is only part of the first draft, so there will be changes made as needed. Hopefully in a few months I’ll have something which will resemble a novel. I’ll occasionally post excerpts from time to time. Would love to hear some feedback. So, here it goes…..
Here I am lying in bed staring up at the ceiling, waiting for the inevitable, the sound of my alarm clock telling me it’s time to get up. The problem with this is, I’m already awake, and I’ve been awake most of the night, passing the time by patting my cat Dixie who’s curled up next to me sleeping with not a care in the world. God, cats have the life, take multiple cat naps a day, get fed, and people play with you and pat you during the day, must be nice. The clock on my nightstand reads 4:00am, and I technically don’t have to be awake for another half hour. So instead of sleeping in my well chilled air-conditioned bedroom on this mid June morning, I find myself wide awake dreading what is about to take place later on this morning. With roughly 30 minutes till I have to wake up, I decide to roll gingerly onto my left side and pull the sheet and blanket up to my neck, and proceed to stare at my clock until it goes off. I truly am exhausted, tossed and turned all night and finally caved in and took an Ativan for my anxiety, before I went into full panic attack mode, which wouldn’t be such a good thing. With 12 minutes until my alarm goes off, I’m actually excited; Yes I said it, excited.
My clock reads 4:24 am, I’ve got 6 minutes to let my mind go wild, well not exactly; 6 minutes to run through my head and make sure I packed everything I needed for the day in my backpack. An extra change of clothes check, socks, yup I packed those, extra colostomy supplies check, 1000ml leg catheter bag yup, underwear pads got them, IPod check, book don’t think so, it’s sitting on my bed next to Dixie the cat. I blasted through several chapters during the night since I couldn’t fall asleep; I need to remember to pack it in my bag before I leave. The countdown, 1 minute to go, it’s finally hear, the magic hour 4:30am. Like clockwork my alarm goes off, I have it set to my favorite radio station 100.7 WZLX in Boston. Coming out of the speakers is Steve Earle’s Hardcore Troubadour, a great song in my opinion, I let it on for about 30 seconds before I shut the alarm off because I don’t want to wake up my brother who occupies the bedroom next to mine. No sooner I shut off my alarm I see my dad peaking into my room to make sure I’m up “you up bubb”, my dad whispers into my room, yup dad I’m up “how did you sleep” he says, not good, not good at all.
I take the sheet and blanket off of me and toss it to the side, partially covering Dixie the cat, she looks over at me and proceeds to cover her eyes with her paw and goes back to sleep. With my two feet planted on the rug, I take a look around my room and take in a deep breath and exhale. I lift my apparatus up off my side bed rail and mosey slowly into the bathroom. It’s a painful walk, my legs ache and they are feeling very tight this morning. Turning on the bathroom light I move straight towards the toilet, my left hand gripping my “apparatus”, that’s the nickname I’ve given to my night urine bag. It’s quite heavy this morning, just about full at 1500ml, I’m lucky it didn’t burst a leak and spill all over my bedroom floor, which has happened and it’s not a pretty sight. Holding the apparatus over the toilet bowl I unclamp the valve and let it rip, the sound off my urine pouring out of this bag is rather loud and goes on for 30 seconds. Finished, I re-clamp my apparatus and hang it onto the door knob of the bathroom vanity. Looking outside of the bathroom window the air seems pretty still, the trees and bushes in our yard aren’t moving, it just looks like it’s hot outside. Pulling off a few sheets of toilet paper I toss them into the toilet, no I just didn’t toss toilet paper into the toilet for no reason, I tossed the toilet paper in to prevent a backsplash, yes a backsplash. I don’t feel like having crap splash back into my face when I empty my colostomy bag and the toilet paper in the toilet bowl prevents that from happening, well it helps most of the time. I learned the hard way, when I first had my colostomy the first few times I didn’t toss any toilet paper into the bowl before I emptied, and you can imagine what happened, crap splashing back up at me covering my face and clothes, not a pretty sight I must say. So after a few times of being attacked by my own poop, I figured by tossing a few sheets of toilet paper into the bowl, the paper would prevent any backsplash from happening, thus keeping my aggravation levels low.
The “bag” is only about half full this morning, which is usually normal for me. Emptying my colostomy bag this morning is relatively uneventful, no backsplash, which makes me happy. I grab a few sheet of toilet paper and clean the top inner part of my colostomy bag. Finished I flush the toilet and place the clamp securely back onto the bag. I‘ve been debating whether or not to name my colostomy, yeh I know it may sound wacky, but some people who have colostomies do name them, I just don’t know if it would make much of a difference if I named my colostomy or not. It wouldn’t enhance my life if I gave my colostomy a name, so I’m going to just stick with referring to it as ‘the bag”, you know, keeping it simple.
I almost forgot, I have not introduced myself. I’m Matthew Bradford, though everyone just calls me Matt, I like to keep things in my life somewhat informal. Let’s just say my life is well you could say it’s very complicated. I was born with spina bifida, which means at 18 years old everything in my life has been filled with sadness and disappointment, more sadness than disappointment. However, everything could take a drastic turn after my doctor’s appointment later on this morning, I’m hoping it doesn’t.
Taking a shower is quite the, um how should I say it, it’s quite the process. I have to make sure the apparatus stays outside of the shower, it’s just easy, I’m afraid of some kind of catastrophe if I leave it inside of the shower. Silly, I know, if the urine bag unhooks and starts to leak it would just drain in the shower, still I would rather have it on the outside instead of inside. I’m use to showering with “the bag”, I just have to remember to cover the air filter so it doesn’t fill up with water on me, which has happened on occasion, okay several occasions, not really a big deal, covering the air filter just makes things you know, run a bit smoothly. I’ll take smooth anytime I can get it, usually things in my life are anything but smooth. This morning I chose to take a cold shower, well not that cold, enough to cool me down and wash all of the sweat off of my body, it’s mid June and it’s pretty warm. Standing under the running water crazy thoughts start to enter my mind, this usually happens when I have an important doctor’s appointment. My mom keeps telling me not to worry and everything will be okay. Well that’s easier said than done. Lathering up with soap my stomach starts feeling queasy and start gagging and dry heaving uncontrollably, fuck.
“You okay Bro”, my brother yells from his bedroom, I don’t respond, I’m dry heaving, how the hell am I suppose to respond. My mom knocks on the bathroom door, “you okay”, she asks. “Ah no, I’m not”, tears are starting to fill up in my eyes, I’m covered in soap from head to toe trying to rinse off in between dry heaving and gagging. “Where is your nausea medication” my mom asks. “It’s on my nightstand right next to my bottled water”, still partially covered in soap I slightly pull back the shower curtain and my mom hands me a Zofran my nausea pill. I take the pill with my rinsed hand and pop it into my mouth, she than hands me my bottled water and take a rather large chug from it. “Do you want me to call an ambulance”, she says. “No I don’t”, I notice the worried look in her eyes, which are starting to fill up with tears. “I’m okay”, I assure her. “Could you make me some toast with peanut butter and bring it up stairs, maybe that will help my belly”, “give me a couple of minutes and I’ll bring it up”. “Okay” I close the shower curtain and finish rinsing off, “rinse and dry off, I’ll be right up with the toast”, my mom yells in.
I feel defeated, I haven’t even been to the fucking doctor.