Twas the night before surgery

Twas the night before surgery and all I could think is dang it I’m tired! Why can’t I sleep?

That’s about as poetic as I get right now. I’m nervous. So nervous. But I have faith in my surgeon and I have faith in my body. I will make it through this. Hell I survived it when I was dying, I can do this healthy.

I’ve rearranged my room, so I can work from bed, when I return. My cat has expressed her dislike for my suit case and what it means, I have fresh sheets on my bed and I just took out my trash. Now I’m lying here, knowing I have to be up at 4 and I just can’t sleep.

If you’ve ever suffered from anxiety, you understand what I’m going through. My brain is divided into two sides. The side that keeps screaming about all the things that could go wrong, all the things I was supposed to do before this surgery and all the things I will still need to do, when I get out. And then there’s the side that logically laughs and reminds me, my surgeon is the top in his field. He saved me, not only from death, but from sepsis. He’s done this before. Maybe not exactly in this manner or in this order, but this is something he’s done before. I’ll get to lose weight now. I should be excited.

I am excited. I’m actually really excited. So, here’s to the last Fistula bag!

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I will win!

I have the most amazing team on my side. Family, friends, doctors, nurses! I am blessed. I love you all!

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Overwhelmed

As the date of my surgery draws closer, I feel the anxiety welling up.  I have faith in my surgeon that the surgery will go well.  I constantly battle the “what ifs” that pop up in my head. Most of the time I’m strong enough to bat them down and ignore them. However, when stressors gang up on me, it gets harder to push them all away.

I’m trying to get time off approved for a job I’m still just a seasonal employee at. It is my dream job. I love it! But I also have trouble with it because it’s hard for me to sit up for very long and the pain makes me irritable, which diminishes my customer service skills. It is a surgery I need and I need it as soon as I can get it.

My time off will not be paid, so I’m worried about the cost of not getting paid for a week. My food stamps were stopped because they didn’t process my paperwork so they sent me a form to fill out again. Which means I won’t be able to help mom buy food in March. My paycheck was smaller than I had planned because of time off, so I’m a little worried.

Then in my game there were issues and at the same time, at work we had system issues but we were required to stay in available, even though we couldn’t help people and that was stressful. On top of that I screwed up other things in my game and caused one of my closest friends to yell at me.

Now, some of those things shouldn’t matter at all, but when you add in the big stressors, the little things started to get to me. Now let’s look at my surgery.

All my little “what ifs” start. What if something goes wrong? He may have to completely remove my rectum. That eliminates any chance of me getting reconnected down the line. Any time you go under full anesthesia, there is a chance of death. What happens to my son when I die? My mom wants me to talk to someone about setting up a Will. Now I have to figure out what channels to go through to get that done. And all the little “what ifs” keep piling up. What if I have to stay in the hospital longer than 2 days? Longer than a week? Will my job still be there for me? How much will I need to do to get that adjusted?

I know I will get through this. This is minor. I’ve been through much worse and came out just fine. But for today, I’m tired. Emotionally and physically, I’m exhausted. I am sorry if I’m short, or rude, or just ignore you. I just need to take some time and get myself in order.

Surgery thoughts

So, I have a new surgery planned.  On March 10th, I go in to have my mucous fistula “removed”.  Basically he’s going to fold over the end of my rectum, tie, sew, and staple the end of it and drop it down into my abdomen.  I’m both excited and worried.  Due to the nature of my situation, this won’t be a simple laparoscopy procedure.  I will be cut open again at the base of my mid-line scar.  He is a little worried there might not be enough skin to fully close.  Yay for biomesh right?

Everyone dreams of being someone’s first, right?  I think this situation is a little different though.  Turns out, my surgeon hasn’t done something quite like this before.  It’s a little unconventional.  My mucous fistula was a spur of the moment decision, because my rectum was literally falling apart as he was trying to close it up.  And he wanted me to lose weight so he could do a J-pouch.  Unfortunately, because of the constant pain, with the fistula, I can’t exercise, so I continue to hover at 205lbs.  I need to be at 140-150 before he feels comfortable with the J-pouch, due to there not being enough slack in the small intestine to reach my rectum.  With the fistula gone, I’ll be able to move more and do more, thus increasing activity and decreasing weight.

And now we come to my excitement.  I will finally be able to start losing weight and maybe one day get rid of my ileostomy bag too.  For now, I don’t mind it.  It’s been a good little stoma, to me.  It only occasionally irritates me, during bag changes.  Spontaneous activity is frustrating (and the reason I use a piece of folded over toilet paper over it when I change the bag).

Anyway, March 10th.  Excitement, fear, anticipation. I’m a bundle of emotions.  I will keep you updated.  I will likely post from the hospital, after the surgery, if I can figure out how to do it from my phone.

My set up

Hey guys.  I’m so sorry about the long since I last updated.  I’ve tried twice and fell asleep.  I’ve got a job I nailed (yay go me!) but it kills my internet connection, since it’s work from home.  I get special access to a VPN which makes it so I can only access the internet through their set up.  Anyway, it’s been great, I had a wonderful Christmas because of it and things have been going pretty well lately.

Recently I have seen a few people having trouble with their bags sticking and I thought I would offer my set up and advice.  I’m still a relatively young female and I’m single. I’m super self conscious about leaks at all times.  I would be out in public, look at my roommate and suddenly say, “We need to get home, now.”  We’ve left the grocery store, our shopping cart full of stuff, and rushed home because of this.  She’ll then go back out herself and finish shopping, but it’s horribly embarrassing.  Now, I have mentioned my belly wraps before, and I’ll mention them again.  The only thing that saves me from having a huge poop stain on my shirt, when this happens, is those belly wraps.  I don’t know what kind of magic material they’re made of, but they keep the liquid in (for the most part).  If you’re quick about it, you won’t feel it leak onto your clothes.

Anyway, so I spent about two months trying various different bags until I found the perfect bags for me.  I used to be okay with Convatech’s opaque drain able pouch with a peek-a-boo window.  But something happened over the last year, and their wafer stopped sticking so well.  I ended up with leaks almost every day.  So I had to switch to Coloplast.  I have never been able to get any of the Hollister products to work for me.  And the belts were uncomfortable and left an obvious extra ring around my body (remember, young single female with a horrible idea of self image and always wanting feel like I look good).  So, vanity got the better of me and I found another solution.  I go through this routine once every three days (or when my mucous fistula bag pops open at the top of the seal).

At the bottom, I’ll list the Reference numbers for all the products I use, if you feel like trying them.

On bag change day, I set up two doggy poop bags, one large disposal bag (the kind that come with the box of new bags) and my Sensi Care Sting Free Adhesive Releaser.  I then grab a few squares of toilet paper for the stoma and the fistula and set them to one side of my sink.  On the other side, I set up two new bags (cut to the right size), Sensi Care Sting Free Skin Barrier, Stomahesive adhesive paste, a few more squares of toilet paper, and my hair dryer.  On the floor, I set up an old grungy towel I have designated as my “bag change towel”.

Now, my ileostomy is almost constantly producing and since I can’t feel it when it goes, I never know when it’s going to suddenly drip, or plop something out.  I have carpet in front of my skin, so before I started using my towel, there was much scrubbing of the floor, after my bags set.  Now I just wash the towel instead.

At this point, I remove the mucous fistula bag first (since my ileostomy is so active) and I use a couple squares of toilet paper to make sure I don’t drip or end up with long strings.  Think of super snot, that’s the kind of mucous I deal with.  I’ll wipe up any excess that might drip and then I move on to my ileostomy stoma.  I don’t clean up the fistula completely, since I’m about to get in the shower and my soap is better at that.  I’ll start the shower at this point, so the water is ready for me as soon as I’m done with my ileostomy bag, and then I turn on the hair dryer (lying on its side, blowing across the two new bags), and remove my ileostomy bag, using a square or two of toilet paper to wipe up the excess and hold over my stoma as I move to the shower.  As I’m getting into the shower, I’ll toss that piece(s) of toilet paper in the toilet I left open.  It is also important to note at this point, I keep a couple pieces of toilet paper on the back of the toilet  for when I’m done with my shower, so I don’t drip when I get out.

Once I’m done with my shower, I grab the toilet paper, cover the ileostomy, and then proceed with drying the area around the stoma.  Spray it with the Skin Barrier and use the toilet paper to keep the output from messing up my sticky space.  Then I can take the hair dryer, blow it directly on the stoma pouch and make sure it is warm all the way around and apply it.  I will check the edges and any edges that lift, I hit with the hair dryer directly and press on.  Then I do my mucous fistula.

I use the Stomahesive at the bottom of my incision line.  Because of where my mucous fistula is, there is about a quarter inch divot of scar tissue right where my bag is supposed to seal, at the top of the fistula.  Also, because of where my fistula sits, the bottom of my bag wraps around the bottom fat roll, just above my public area.  This placement is probably the worst possible place for a mucous fistula but apparently there wasn’t enough length to put it anywhere else.  So, I will spray that area with the barrier spray and then hit that bag with the hair dryer directly, too.  Then I apply a layer of Stomahesive around the opening of that bag and apply it.  Once again I check for any lifting and spot hit with the hair dryer.

After all that, I’ll spend up to an hour, not doing anything and just letting the bags and paste set.  If I try to do much in the mean time, or sit up straight, I’ll end up with leaks.  I try not to vary from this routine, because it took me months to perfect it.  The only reason I have to change my bags so frequently is the stoma past will pop lose on my scar tissue and anyone who has a mucous fistula will tell you, that is the worst smell in the world.  I’ll take baby diapers over mucous fistula any day.  I used to muck stalls in a horse stable, live around cows, and skunks.  I have yet to find a smell that is worse than mucous fistula.

Anyway, it’s hard to get anything to stick to the scar tissue, so I don’t mind that it pops open every few days.  I just take a shower and start over.  Oh, and of course, the belly wraps I got from ostomy secrets are a huge help.  They keep everything pressed against my body, but not so tight there are lines, or the bags can’t fill normally.  Below you will find everything I use and a link to ostomy secrets

Ref: 420798: Sensi Care Sting Free Adhesive Releaser

Ref: 413502: Sensi Care Sting Free Skin Barrier

Ref: 183910: Stomahesive stoma paste

Ref: 15532: 1 in pre-cut opaque Coloplast drain able 1piece pouch

SenSura Mio: opaque 1piece drain able pouch, adjustable size (it will fold in half and the bottom will attach to the peek-a-boo window, perfect for my fistula)

https://www.ostomysecrets.com/ (for men and women)

It’s your fault

Which one of us hasn’t heard this or thought it about ourselves?  Your situation you’re in was because you didn’t eat the right things, or you thought it was just cramps and didn’t want to go to the doctor, or you didn’t have insurance and were afraid of the medical bills.  Whatever the reason you try to put on yourself, it is rarely our fault for our situation.  Sure, there’s some responsibility we have to take in some situations, but it’s not YOUR fault, when your body betrays you.

In my situation, I stopped taking my therapy meds, because I had lost my insurance and my medication cost me $500 a month.  In the three months it took me to get insurance again, I managed to have another bad flare up of my UC (ulcerative colitis).  Ultimately I ended up in the hospital and almost died, when my colon ruptured and I had to have emergency surgery.

Yes, it was my fault for not talking to my family to see who would be willing to lend me $500 a month to pay for my medication.  Oh and just for the record, I did talk to my GI doc at the time, who gave me Rx for 3 months of my therapy meds, but my insurance denied it (they had no idea I was about to lose them because I had lost my job).  I only got one month, so I did try to get myself covered.  But back to my point, I was only at fault for not trying to get help to pay for my medication.  As it turns out, according to my doctor, this was always going to happen to me.  It was only a matter of time before my colon ruptured, because even with the therapy meds, I was still getting flare ups, so my colon was so scarred and thin, it wouldn’t have lasted long anyway.

Before my colon ruptured, my mother and sister were angry with me, because I was in the hospital again.  They blamed me completely, for my situation.  Just days before I had gone in, my mother had lectured me about it being my fault that I was having a flare up.  Fact is, the only people I could have asked for help from were my grandparents and I was already getting help for rent.  I felt like a leech already, asking for more money, even if it was for my medication, just wasn’t something I could do.  I had a mental block against it.  I probably should have been seeing a therapist or something at that time, but again, no insurance.

Anyway, I see people post about being upset that their friend or family member “did this to themselves.” It’s hard to know every person’s situation and really the ultimate response should be, “just keep your nose out of it,” but what if I could help them understand that if nothing else, that person needs their support.

I’m not saying it was okay that I didn’t ask for help, it’s that I had trouble with it.  I already felt like a burden, I already felt like a leech.  And while I was in the hospital, the feeling of “this is all my fault” got so overwhelming at times, that I felt I deserved exactly what I ended up getting, a ruptured colon and I almost died.  I managed to keep my positive attitude about my situation, while I was in the hospital.  I wasn’t faced with how obvious it was that I was leeching off my family and a burden to them.  And while I could still see their Facebook posts about how hard it was handling the things I should have been handling, my family was really good about keep those to a bare minimum.

 

But please realize, that any time you post negative things about a person who struggles with any kind of problem it will likely just make things worse.  I understand being frustrated with a loved one, when it feels like they aren’t taking care of themselves.  But maybe what they really need is more support.  And if you don’t want to give it, or you’re tired of trying because it doesn’t sound like they’re listening to taking it seriously, then just don’t keep trying.  Just don’t post anything about it.  Keep the negative feedback to yourself.  You run the risk of making things even worse for them.

I suffered from depression and anxiety before my incident, it’s one of the reasons I had a hard time reaching out for help.  When I saw the negative things, or was told the negative things it only made things worse and I seriously started wishing I had been a half hour later to my surgeon.  I have since sought help and I don’t feel that way anymore.  But if you truly love the person you are frustrated with, just remember, words hurt.

Wraps

As I have mentioned, I have two ostomies.  One ileostomy and one mucous fistula.  Unfortunately, my mucous fistula is at the base of my surgery scar.  Because my surgery was an emergency, there was no nice neat little laparoscopy.  They sliced me open, vertically and took all the infection out.  But because I was so infected, he couldn’t just fold over the end neatly and staple it up like a nice neat little package.  He had to give me a mucous fistula.  It probably wouldn’t be so bad if it wasn’t so far down.  It’s so low, low rise jeans are almost too high.  You can imagine what this does for clothes.

I’m a big girl.  I’ve also got PCOS, so gaining weight is easy for me, losing weight took not eating for two months and then emergency surgery to remove part of my intestines.  And even then, once released back into the world, I shot back up to 207 (and sitting steady there too, I might add).  So, I normally wear longer shirts.  I just feel more comfortable making sure I’m totally covered.  But even with my longer shirts, I still have a hard time hiding that mucous fistula bag.

About two months after being released into the wild, I found it hard to keep a good seal on my bags.  It was expected with the mucous fistula bag, but the ileostomy wasn’t staying on either.  Not to mention that little fistula bag playing peek-a-boo with the world (and at the time, the only bag I could get to stick was the transparent bags…you can imagine my embarrassment).  Thankfully, one of the a couple people to me took pity on me and my close friend had discovered Ostomy Secrets.

If you haven’t checked out https://www.ostomysecrets.com/ please do.  My wonderful friend sent me the link and told me to pick out some wraps.  Because of my situation, I couldn’t go with their smaller bands, I had to go with the wider option.  I haven’t regretted it at all.  I’ve been using them for nine months and I feel naked without them.  They have pretty lacy ones to make you feel sexy, they have nude to blend with your skin, black to go with your clothes, pink, if you’re into that color.  I find, when I wear mine low, so they peek out from under my shirt, it just looks like I’ve layered my shirts and it’s a tank top.  Thankfully, with today’s fashions for women, that is very “in”.

If you know of any other site that has wraps, feel free to leave it in the comments.  Ostomy secrets has more than just wraps, but I have found those to be the most amazing thing, for me.  Also, one of the added bonuses to the wraps is that they help the bags stay on.  They have built in pockets on the inside, so you tuck your bag into the inside of the wrap and even if the wrap starts to slide up, your bag still isn’t exposed.  It takes the weight off adhesive wafer and drastically reduces leaks.  If you do leak, it is likely to get the wrap first and protect your clothes.  And they wash very easily.

Just a little tmi about the leaks.  The other night, I had eaten corn.  Now anyone with an ostomy, who has eaten corn knows what this means.  However, for those who have no idea, I’ll fill you in.  Our body doesn’t actually break corn down.  This leads to two things; gas, and corn chunks in your poop.  Well, I missed corn on the cob so bad, I didn’t even think, when my mother and son were eating and I ate it.  That night, my bag got a bit firm with gas.  It actually got super full and sure enough, just like I was warned, it almost literally exploded out the side.  I woke up about 30 seconds before this happened.

Now, why must we touch something when we know it is gross???  I have no idea, but sure enough, I put my hand inside my wrap and discover exactly what I knew would be there.  Corny poop.  Now that the gas had found a way to escape, there was no way my wafer was sealing its self back up, no matter how hard it tried (and it did try, bless LOL).  It continued to “fart” out the side, carrying the wonderful smell and corn chunks.  I made it to the bathroom and managed to get myself cleaned up and my bag changed, after a shower.  My wrap, I set in the sink until I could get my body taken care of.

Upon inspection, I discovered my PJ’s and bed were completely fine.  Not a drop on them.  My wrap had to be turned inside out and rinsed, then one trip through the wash and you’d never know what happened the night before.

Seriously, if you haven’t checked out Ostomy Secrets, go do it.  They are worth it.  I have six, most of them are black because they go well with my wardrobe, but I have found the nude one to be very convenient.  I will likely be getting a few more, when I start dating again.

So, if you have any stories of your own to share, please do.  I love to hear from others and their experiences.  Together we are strong!

Before the surgery

I got diagnosed with Ulcerative Colitis in March of 2014.  Up until about late November, early December, I was on steroids and a therapy medication.  The steroids were to help get my inflammation under control and keep the flare ups at bay, until the therapy meds built up to to a therapeutic level.  I happened to be one of the few people who is allergic to Mesalamine, so I couldn’t take the one medication that is supposed to start working almost immediately.  Instead, I got Azathioprine, which takes much longer to build up in your system and you have to take get regular blood tests to make sure it doesn’t cause problems for your kidneys.

I ended up gaining a lot of weight (didn’t actually weigh myself so I don’t know how much for sure, probably close to 40lbs in 9 months).  During that 9 months, I also managed to pick up C-diff four times.  I also found out that three others in my department at work were getting it too.  We were pretty certain we were getting it from work (btw, been gone from that place for over a year and a half and no C-diff), but HR wouldn’t or couldn’t do anything about it.  Between the C-diff and the flare ups, I ended up missing more than half my scheduled shift for 2014.  It was horrible.  I had qualified for FMLA, but the amount of time given wasn’t quite enough.  I ran out of FMLA by December.  You know, that time when everyone get sick and passes around colds?  By this time, the head of my department was tired of me missing work and was looking for any excuse possible to fire me.

I had one more flare up at the beginning of December and my FMLA was gone, so I had to work within our company’s attendance policy (which didn’t have sick days).  This policy had changed at least five times since I had started working for this company (and I had been there for five and a half years), yeah, that’s at least once every year.  So I had asked my supervisor what about the policy and how to avoid getting written up.  He gave me misinformation and I got written up for doing what he said was okay.  When I tried to fight it, they said it was on me because I had signed the paper in April, saying I had read the attendance policy.  The write up only lasts 30 days, so I figured, it wouldn’t be the first time I’d worked through the pain at work, I could tough it out for a month, not miss any work, and then reapply for FMLA (that time was coming up in about 30 days too).

Three days before my attendance probation was over, the supervisor who wanted me gone, walked by my desk, as I was silencing my kindle (we had a no electronic device policy at our desks, but many many people, including other supervisors had read kindles at their desks).  She went over and told the head of the department and they decided to send me home, half an hour before my shift was over.  The next morning I was fired.  After almost six years of working for them, I got sick and they wanted me gone.  The best part was when they denied my request for unemployment afterwards.  Incidentally, I lost my insurance, couldn’t afford the $500 therapy pills in the interim between when I got back on insurance, and it caused the flare up that ultimately landed me on the operating table.

I know I’m not the only one with a chronic disease that has been singled out at work.  At that company alone, there were at least five others in my department that had targets on their back as soon as their condition was made public.  It doesn’t matter how illegal it is for a company to single someone out, or look for reasons to fire you.  And believe me, I accept that it was ultimately my fault.  I knew they wanted me gone and were looking for a reason to do it.  I knew that having any kind of PED at my desk was against policy and regardless of them letting others do it, because they wanted me gone, they’d report me.  But the fact is, after six years, you’d think they would be a little more understanding.  This wasn’t a big corporation.  It was still a relatively small “mom and pop” kind of business, privately owned by two wonderful people.  The problem is, those two people never knew what was really going on in their call centers.

Fact is, when you have a chronic illness or chronic pain, it’s not enough that you have to suffer (sometimes daily) with your condition, but then you also have to practically walk on eggshells at any place of employment.  It’s already emotionally draining to power through your day like you’re okay, but then to also have to be 100% the “exemplary employee” just to avoid getting treated any different from the dude who fakes headaches and goes home early, or the chick who answers her text messages from her phone, while a supervisor (the same one who sent me home) is sitting at her desk chatting with her.  The double standards are horrible and I know I wasn’t the only who had to deal with it.

Once more, I find myself saying, “You’re not alone.”  It is unjust and unfair, but fact is, unless you want to end up unemployed for far too long, it is something you have to endure.  I am physically capable of working in that line of work again, therefore I don’t qualify for disability.  Thankfully, I still currently qualify for unemployment, so I have some income.  But I am living off the generosity of others and I can’t take care of myself and my son, if we were to live alone.  That is probably the worst feeling of all.  I can’t provide for my son.

If you still have your job, but are worried because you think there is a target on your back, try not to stress about it.  Accept that this is the way things are for now and just accept that you’ll have to be the best employee ever.  If you don’t stress about it, chances are, you won’t slip up.  It’s easier to think when you’re not stressed or overwhelmed and with a clearer head, you’re less likely to forget your keys when you walk out the door, you won’t forget to clock in on time from a break or lunch or at the beginning of your shift, you’re less likely to forget the little things they could nail you for.  And best of all, the most important thing;

If you don’t stress, you won’t aggravate your condition.  Chances are, if you’re reading this, you suffer from a chronic illness, most likely UC, Crohns, or some other IBS.  And as we all know, stress can trigger a flare up faster than anything.

My biggest problem with that job was that it caused it a lot of stress.  Even before I got diagnosed, I was under a lot of stress to be good at what I do.  That’s mostly due to the fact I am a perfectionist and I wanted the supervisor position (I was about to get it too, actually).  But my GI doc ended up telling me, the stress from that job, coupled with the NSAIDs I was taking for my back pain, triggered my Ulcerative Colitis.  Losing that job was both a good thing and a bad thing.  I wasn’t so stressed, but I was also broke.

So, if you’re in a situation similar to mine, wondering, “Would it just be easier if I left this place?!” Weigh your options.  These days health care is a little easier to get, if you’re unemployed.  But honestly, if you’re able to get yourself into the mindset where you’re not so stressed about having a target on your back, then you can likely let that stress just melt away and make work less toxic for you.  If I could go back and make myself accept my situation and not stress as much, I would.  It probably would have saved me at least one of my flare ups.  Don’t know about that C-diff thing though.  It is kind of nice to not worry about that anymore.

Anyway, I hope this post helps a little, if you’re feeling like no one understands your situation, or you don’t know if you should leave that job or not.  You are not alone, someone understands (many someones actually), and that list is a rather personal decision.  All I can do is tell you my situation.  And honestly, if it weren’t for my mom, I’d likely have ended up in a women’s shelter by now.  Or in the projects somewhere.  But that’s just my story.