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To surgery or not to surgery

Tonight, I’m going to talk about surgery. I have to lose weight and so far, it’s not going well. It’s never gone well. I’ve been on yo-yo diets, I’ve tried “mindful eating” and exercise. I’ve tried not eating (that works real well until you pass out from exhaustion and then gain it all back and then some). None of this works. I can’t just cut out things completely from my diet and honestly, that’s not a good idea anyway (this has been confirmed by at least 4 separate dieticians/nutritionists that I have personally talked to).

So, after talking things over with my colorectal surgeon, his office referred me to a weight loss clinic in Portland. I’m hoping to be accepted into a weight loss and bariatric surgery program. I had my welcome group visit today. It’s not going to be quick and I may not be accepted. Like always in my life, I’m too big for what I want but too skinny for those who like overweight LOL (and yes, this is basically how my dating life goes, I’m too fat for guys who like fit girls and too skinny for guys who like “fat chicks” but that’s another story). So, at this point, I’m still hoping I’ll still be accepted into the program.

Alright, so what am I looking at? Well, I’m looking either a gastric sleeve, or a gastric band. They both have their pluses and minuses. I’ll start with the sleeve.

Gastric Sleeve:

Most of the stomach is removed. A long tube-like stomach is left, that is about the size of a banana. It restricts how much you can eat at one time, so you feel full with less food and less grehlin (the hormone that causes hunger) is produced (I’ll come back to this hormone later). Average weight loss is about 50-55% of excess body weight. You’re less likely to have ulcers or blockages than the bypass and there is a lower risk of vitamin and mineral deficiencies.

The risks include heartburn, scarring, long-term weight loss is unknown (because it is a relatively new procedure compared to the bypass or band) and of course death. With any surgery death is a risk so that one is a given.

Results are usually seen within the first year. After that is just maintaining.

Adjustable Gastric Banding:

This is also know as the “lap band” surgery. It is just a band that goes around the top of the stomach, causing a small pouch about the size of a golf ball (imagine only being able to eat about the size of a golf ball) and the band can be loosened or tightened by adding saline through a small port that attached just under the skin and connected with a tube. It restricts how much food you can eat at one time (yeah, like a golf ball) and makes you feel full with less food (grehlin production doesn’t change). Average weight loss is about 40-50% of excess body weight and takes about 1.5-3 years to see results. However, no permanent changes are made to the stomach or intestines and most patients go home the same day of the surgery. And of course there is a lower risk of vitamin and mineral deficiencies.

The risks, however, are greater than with the sleeve and include heartburn, slippage of the band, blockages at the location of the band, erosion of the band, high maintenance, and of course death. Slippage of the band is where it slips down and suddenly that golf ball gets a bit bigger. Erosion of the band is where it erodes through and then into the stomach. High maintenance includes needing to go the doctor frequently to have the band adjusted, based on the results being seen.

 

So, there are my two options. I still need to talk with a surgeon and go through a bunch of stuff before I can even think of getting the surgery done, or even decide which one I’m going to get. I have four specialists I’m going to be seeing: Medical professional, Nutritionist/dietitian, Physical Therapist, and Psychologist (Behavioral Health). All of these specialists will be helping me prepare for the surgery and monitor me over the next six months. I have all of my initial visits scheduled for these guys and over the next month or two, I will be getting these things taken care of.

To finally have a light at the end of the tunnel with my struggle with weight loss and the potential for having my ostomy reversed, I feel a funny kind of anxiety and relief. I’ve always fought with that stupid hormone grehlin so if I can get the sleeve done, I can say goodbye to that running my eating habits. It is hard to explain to someone who doesn’t have to struggle with it. It’s normal to get the “Gee I’m really hungry right now” feeling. It’s quite another to have it pop up 5 min after eating (regardless of what was eaten, so please don’t try to tell me I just have to eat right, it doesn’t matter what I eat, this happens and I’ve eaten everything from candy bars to cauliflower).

Having a psychologist who specializes in this stuff is going to be awesome to help set me on the right path to getting my behavior changed. Let’s face it, exercise alone doesn’t always help and yes, I’ve tried. Diet alone doesn’t work and yes, I’ve tried. I’ve even tried combining the two. And while combining the two works for a little while, I’ll plateau and then dropping any more weight is impossible. It’s all so frustrating. And I’ve never been good with sticking to a plan for more than a 3 months (for all those who say, it only takes a month to establish a habit). I stick with something for a while, but then things change, something happens, and I fall off. And these guys are there to help keep me on.

Overall, I’m excited. This will definitely be an interesting journey.

Bellybuttons

Let’s talk bellybuttons for a bit. All people have them. Most “normals” don’t have a problem with them. However, if you’ve had any surgery that cuts through your belly button, you might have problems with it now. And no one seems to want to talk about it.

Since my surgery was emergency, they had to slice right through my belly button. My surgeon decided he was going to do me a favor and when he closed me up, he kept a tucked space that was to be my belly button. Problem is, now it’s a funny shape with no give to it at all. This means, when sweat and dirt get in there, it hurts like hell to clean it out. I’m sure I’m not the only one who has this problem.

It gets all red and itchy or inflamed. If I try to clean it before it gets to that point (and after of course) the skin at the top starts to tear and I end up bleeding. It smells bad and of course it hurts. And this happens regardless of if I try to wipe it out every day or not. If I wipe it out too much, it ends up inflamed, like a runny nose. If I don’t do it enough, the bacteria and moisture make for a great smell and pain. Doesn’t matter if I use anti-bacterial soap, or scented soap, or salt water.

So far, the only fix I’ve found is to him to remove my bellybutton completely, when he goes to do the reconnection surgery. For now, I’ve found a small dollop of Destatin, or similar cream helps keep the area dry and healthy.

Do you have problems with your bellybutton too?

Stomas

Let’s talk stomas. I recently read an article where someone talked about her experiences using facilities meant for people with disabilities. So I have some questions. Do you see yourself as disabled? Do you use the disabled seating on public transit? Do you use the disabled toilet, when you are in public restroom? Do you still carry around a large bag full of ostomy supplies?

I know my own answers to this, but I’m curious about others. Part of me wants to reach out this woman and get her into as many support groups as possible online and in person, because I feel like she’s taking on a lot of stress she doesn’t need. She’s currently campaigning to get stomas added to disabled stickers and signs. There are a lot of hidden diseases out there, and I just don’t feel there is enough room on a sign or sticker to cover all of them.

Why are we any more special than someone with MS? I believe (don’t cite me, I’m not positive) the universal symbol for disability is that stick figure in a wheelchair. That doesn’t matter what kind of disability you have, that’s just the symbol of disability(ies).

Anyway, I think this movement is a little silly, but that’s my personal opinion. I’m still curious to hear other stories. Particularly; have you ever used the disabled toilet in a public restroom and been chastised for it? I don’t subscribe to a lot of groups and I don’t have a lot of experience with being treated poorly, but I’ve heard some other stories. I’ve heard of people being rammed with wheelchairs or scooters, people getting yelled at or at the very least, the stink eye, when they use the disabled toilet or facilities.

Have you ever felt the need to use the disabled seating on public transit, because of your ostomy? This one confused me. I’ve used public transit before. I can’t say I’ve ever felt the need to use the disabled or priority seating because of my ostomy. There have been times I’ve used my bag to help block my ostomy, so no one bumps into me. I’ve also found myself hyper-aware of where people are, just in case I need to use my arms to stiff-arm someone who gets too close. I also find myself anxious about someone bumping into me and “bursting” my bag (popping the seal off). I’ve had my seal break before, but usually it’s after I’ve worn the bag for too long, or it’s a super hot day and the seal is compromised. And almost never because someone put pressure on it. I have no rational reason to be anxious, I just usually am.

So those are my curiosities. What are your experiences of being “bullied” or “abused” because you have an ostomy? Please reply either on the my original post on FB or on wordpress, so I get the updates. I think it would be good for some of us to share with each other.

Thankful

Tis the season for thankful things. So, here’s my positive post. These are the benefits of having an ileostomy. All the things that make me thankful for having an ileostomy. I didn’t realize I had so many, but here they are:

  • #2 bathroom trips are much shorter. No worries if I forget my phone, when I go
  • With deodorizers, I can make my shit smell like roses
  • Food poisoning is so much easier to handle (recently had it and I didn’t have to throw up). My bag caught everything and I was still able to work
  • I no longer have to squat in the woods for long periods of time to do #2, when camping.
  • I’ve already lost the “water weight” in working out, so everything I do lose is actual weight
  • I stay hydrated because of how much water I have to drink, due to not having a large intestine
  • I no longer have to worry about those embarrassingly smelly little toots while on a date

Ultimately, I’m looking forward to getting rid of it, but that doesn’t mean I can’t love it while I have it 🙂 I hope you all find something to be happy about this year. Remember to always look for the silver lining!!! It’s there in EVERY situation, even if you have to look really hard.

Weight loss

So, as I’ve mentioned before, I am trying to lose weight. This came on for a couple reasons. One of these reason is obvious, I’ve mentioned it before, I need to get down to 150lbs before my surgeon will reconnect me and I can do away with my ileostomy. The other reason is because I have PCOS (Polycystic Ovary Syndrome). This is a chemical imbalance that cause a woman to fluctuate severely in weight. It also causes cysts on the ovaries (hence the name). Anyway, so I’ve had a hard time losing weight and keeping it off. Doesn’t mean it’s impossible, just difficult. And now with the dietary restrictions of the ileostomy, it’s even more difficult. But again, not impossible.

I have recently started up a buddy system, with my sister. On my breaks, at work, I send her a text to challenge her, or she’ll send me a challenge. Then we both do the challenge and send each other the results. She wants to train for more OCRs (Obstacle Course Races) and I want to lose weight, reverse my ileostomy, and join her one day in the OCRs. So, baby steps.

I’m not afraid to say, I started at 218. I used to be terrified of getting over 200 lbs. I’m only 5’1″ so it’s scary, to me, to be that over weight. I know all the health problems that come with being obese and I already have enough health problems. So anyway, I’ve gotten bigger than I’ve ever been okay with and now I have to work it off. Not just because of the surgery, but because I can’t stand being this weight.

I just want to take a moment and say, if you’re my size or bigger and happy with your weight, that so awesome!! Truly, I don’t want to take away from your happiness or make you feel like you HAVE to lose weight or something. This is purely about me and what makes me happy.

Anyway, so I haven’t changed my diet a whole lot. I’ve cut back to almost zero soda a week. We’re talking like maybe a glass or two per week. The rest of the time I drink water. For food, I’ve cut back to only once or twice a week for fast food. I already knew I couldn’t drastically change my diet or I’d never stick to it. But I’m doing well and I’m slowly losing weight. I went to a nutritionist a couple months ago and while she was trying to plan something around my PCOS I made sure she had the list of things I could and couldn’t have with my ileostomy. It was so hard not to laugh every time she’d go to suggest a vegetable, “Well, go ahead and increase your…oh wait, you can’t have that. hmmm.” After about an hour, we managed to settle on a few veggies. So now I’ve added more sweet peppers (skinned) and that’s really all. All the other veggies in our region either cause gas or are too fibrous and could cause a blockage. I don’t really care about smell since it’s just me, my mother, and my son, but they certainly appreciate that I’m not eating the stuff that causes extra smelly…..well, you know.

Anyway, so at this point, I have successfully dropped 18 pounds. I’m down to right around 200, give or take a pound or two. But I’m very happy about it. So, there it is. It’s a slow process, but it’s happening! And I’m feeling really good about it.

Long time, no post

First I want to thank anyone who still follows this blog, even though I haven’t posted in a long time. I’m sorry about that. Been crazy with work and then didn’t have time after work. But lately, I’ve had more time and have been thinking about this blog again. I actually have a couple things to touch on. One is bag leaks and the other is illness (a cold).

Bag breakdown:

So, recently I’ve been enjoying the fact that I have those amazing belly wraps that hold my ileostomy bag against my body and help prolong how long I can wear a standard bag before I need to change it. Unfortunately, sometimes I wear it too long and the seal breaks down. I know there are bags out there that allow you to wear them longer without them breaking down, but I can’t find them and I have so many of these standard bags. I just need to remember to change them more frequently. Mostly because I really hate the after effects of me letting it go. It’s not just the sudden need to run to the bathroom and take a shower, because your belly is covered in poo juice (though that is bad, believe me). It’s the depression that hits me afterwards.

I can’t help but feel dirty and disgusting afterwards. Like even after showering, getting new clothes and a new wrap, I still feel dirty. This depression has gotten worse lately, with the last couple of leaks because I’m actively trying to find a permanent partner. I just keep getting reminded that one of three things usually chases a guy off: I’m fat (no sugar coating it, it’s just a fact), I’m a mother, or my ileostomy. And I know, “If a guy really likes you, then those things won’t matter and it means you’ll find someone more real who likes you for you.” But all the sudden, “Yeah I’m not really looking for a relationship right now, but if you want to have sex we can still get together,” as soon as they find out about one of those things, starts to get a girl down, after a while 😦

But, if you know me, you know I’m optimistic and will keep my head up…you know, once I pull myself out of that depression of, “No one will ever want me!!” But of course, part of this could be avoided by just changing my bag more often than once a week. LOL So, mostly this is a PSA, change your bag more often if you don’t want leaks.

Illness (a simple cold):

So, recently I got sick. Just a cold, nothing big….for everyone else in my house. My 7 year old son was only sick for one day, where I kept him home from a birthday party. My mother only stayed home a couple days and was only really down for a couple days. Me? Oh yeah, I couldn’t talk for almost a week and I felt my energy super drained for almost a week and a half. I’m not really looking forward to my next pay check.

Now, you may be asking “why?” That’s fair enough, it’s been a while since I posted, so you may have forgotten I was diagnosed with Ulcerative Colitis. Which is an autoimmune disease. I have a compromised immune system. Things that most people fight off easily knock me down for a long time. I still have a persistent cough, bleh. But it’s getting better. I think the worse part was each time I thought I was doing better, the next day could barely get out of bed.

And lets not forget how frustrating it is when people forget I have a problem with my immune system, so they can’t understand why I’m knocked down so hard by a simple cold. Thank goodness for NyQuil and Musinex LOL

Anyway, I think I’m done complaining for now. My next post will be sooner and will be a more positive one about my weight loss adventure. It’s been a fun adventure, so far.

Home: Day 3

No, don’t bother looking for days 1 and 2. I’m lazy, I didn’t post about them. I am happy to say, my surgery went well. It went better than well, as far as I’m concerned. My surgeon says my stitches are held together with wishes and dreams (and skin glue), but the fact that I’m totally sewn up is amazing on it’s own. I was under the impression I would be left open (within reason) and my incision site would need to heal from the bottom up, the way the original surgery had to heal. However, it looks like there was enough skin and enough slack on my skin, to close me up. I am healing scar tissue to scar tissue, so it will take longer than normal for everything to heal, but I can live with that.

I still have my drain tube, which will be pulled on Friday. The output on it seems to stay steady (in that the amount isn’t increasing or decreasing), but it’s also staying clear and light pink (getting lighter each day). I’m supposed to be keeping an eye out for cloudy or yellow (indication there’s an infection). My incision line only has a couple band aides on it to protect my clothing. Again, keeping an eye out for yellow discharge, and making sure it doesn’t pop open.

I can’t lift anything, not even my cats. Which basically means my mother and my son are doing most things around the house. I take short walks to make sure I keep my energy and I drink lots of water. Everything seems to be going well. I can’t tell you how excited I am to be healed. Once I’m healed, I will be able to add some adventure posts to this blog. Now that is something I am definitely looking forward to. So please, whether you’re reading this on WordPress, or Facebook, or Twitter, please leave a comment with a request for where you’d like to see me go, when I’m healed (try to keep it to within 200 miles Salem, OR).