Things are going well. I’m going less frequently, My appetite is getting better, and I’m getting my energy back a bit. Still really weak though, and can’t wait to get back to the gym. I’m still getting sudden urges here and there that are painful but go away almost immediately. Besides that, not much pain. The wound is taking a while to close up, but a piece of my intestine was sticking out of me after all, that was to be expected. Calmoseptine is the go to for butt burn. Seems to be helping. Looking forward to this being all over! Got down to Myrtle yesterday to visit Abby….my dog lover, and some friends out at the bar. Was out until 2:30, but didn’t risk drinking yet. We had a good time. It was good to be out with friends and not cooped up inside today. Nothing I’ve eaten so far has given me any noticeable problems. One day at a time though! I’ll keep you posted!
Month: August 2015
Tuesday – August 25th
ok. I’m now doing normal butt things like most you humans do. I poop. I fart. I’m not great at pooping and I’m even worse at farting. The first few were….fun. Now it’s more a game of Russian Roulette, if that paints a pretty picture for you. I’m right away not restricted by any diet. I’m certainly not as sore as last surgeries, though I do have a pretty gnarly hole in my stomach where my stoma used to be. Before I had surgery I did scour the Internet on what to expect and google did tell me a thing or two about “butt burn.” Ahhhh the notorious butt burn. Let me begin by saying, no forums or blogs or “DANGER DANGER” signs could have prepared me for what this really meant. We’ve all been there. A bad hamburger at a dive bar, one too many late night crunch wrap supremes ordered through the drive thru on the way home from the bar, or just the good ol’ flu. Enough poo and enough wiping, will inevitably, lead to butt burn. There are creams, there are lotions, there are bidits, but nothing seems to quite soothe the ass from some killer butt burn. Believe me, I’ve tried it all. Because I pretty much sealed my fate the second I decided to document every step along the way of this poo disease that required the removal of my colon and the placement of a bag that held feces at my stomach, I really only have myself to blame for all this private info I feel I have to divulge. Theres no going back. This certainly won’t find its way into the about me on my Match.com profile. Also, relax, I don’t have a Match.com profile. Now I find myself falling into a spiral of sentence after sentence about how sore my ass is and expect to be able to smile at the people I know have to be thinking, “there’s a fire in his undergarments.” Anyway, today is really the second full day home. I’m pooping a whole lot. So much I lose count. It’s never run to the bathroom poop, which is good, and those of you about to go through this yourself, find pleasure in the fact that there is little if any pain when trying to go to the bathroom. Except, of course, the butt burn. I am also getting some senses of urgency where I’ll have to squeeze for a second or two and it’ll go away and I’ll be okay. It is a little painful and I’m not sure if that’s normal or not, I’ll have to ask at my follow up which is in 2 weeks. I’ll keep you posted as the days progress in hopes I find something to relieve the pain in my bottom. I’m hoping the frequency gets better with time too. I’m waking up a few times during the night which sucks, but was expected. Thank god this is the home stretch. I’m thinking now a good title of this blog post would be, “Fire in the Hole!”
Sunday – August 23rd
Today, no doubt worst pain since surgery. All I could do was sleep. No appetite… No nothing. Though, in an alternate universe, I was still having a killer time with good friends…
The GI doctors came in in the morning and basically said I just had to Poo to go home. What a weird thing! My mom got to the hospital early. We decided maybe I should try and walk. I attempted to get up, but had to immediately lay down in the fear I was going to the pass out. Maybe from the pain, but I don’t know. Nurse came in immediately and gave me nausea medicine through my IV and we eventually upped my dose of pain medicine. The nausea medicine worked almost immediately. It did make me super drowsy though so I went back to sleep. When I got up I was feeling a little better. The head nurse came in and came in with more medicine… But couldn’t put it in my IV because it was red and sore and time to change. Boo. Being stuck for an IV Isn’t great. I can handle it, but if it can be avoided that’s wonderful. Anyway, she clamped me up and started fishing for a vein…when all of a sudden, BOOM BOOM, came knocking. For those of you who are unfamiliar with the term BOOM BOOM, it means, I have the urge to poo. I tell her and she immediately unhooked and gets me out of bed. I head to the bathroom where….I anticlimacticly (is that a word) Pooped! It was in no means formed or soft, but poo had exited my butt. That was that. Good news. I hopped back in bed and got a new IV and some more medicine. As the day went on it got better. I ate some chicken nuggets and mashed potatoes for dinner, and went Poo again! This time though, came a lot of gas. More good news. Now here I lay, bored out of my mind. I fell asleep at 8, so when I woke back up at 11 I thought it was 4 in the morning…so That’s what I’m dealing with. The pain is tough but not nearly as bad as I thought it would be. Though we are stil in the early stages and that can certainly change. All the nurses here are all so awesome. I’ve been in this wing two times already so they’re all familiar faces and they all remember me. Well, they remember OSTY, not me… He loves the attention. That’s the scoop. I’ll be back tomorrow with more news. Hopefully that I can go home. We’ll see.
Saturday – August 22nd
Its 4:30. Just woke up to get my dose of Oxy, Tylenol, and Heparin. Pain is tolerable, but always there. I was up walking yesterday and my catheter was taken out too. I had no problem going to the bathroom afterwards. In fact, I’ve been peeing like Austin Powers in the first movie after he’s cryogenically frozen they have him go to the bathroom and he just keeps on going and going. If you haven’t seen it or have no idea what I’m talking about, here’s the link to the scene. Austin Powers
I had a bagel for breakfast and turkey and mashed potatoes for dinner. Last step is going poo. Just waiting on everything to wake up. I talked to surgeon for a second yesterday who mentioned that I had a stricture which means my butthole more or less “shrunk” or closed up a little because of lack of use… That explains the notorious 22 situation. He said it’s possible he’ll have to do a rectal exam and stretch it out himself next time I see him. Blah. We’ll see what happens after I start going. He insists it won’t be as painful as last rectal exam. That’s it. Bored here, going to try and fall back asleep. Also, if y’all remember I was supposed to be at a bachelor party this weekend in Atlantic City for my buddies bachelor party. I couldn’t make it, obviously, but have been getting pictures from them from the trip. They’re below…
Wednesday – August 19th, 2015
‘Twas the night before surgery
And all through my mind.
We’re thoughts of no bag and a working behind.
I was nervous, of course- but mostly relieved,
thoughts of McDonald’s…. Rum…. Pizza with grease!
The journey began on a morning in March,
Now 2 surgeries later I’ve got a bag full of farts.
The blogs and the forums and stories I read,
Couldn’t prepare me for this, wearing diapers to bed.
Hey doc you did good, but just so I know.
What’s the policy on taking my colon to go?
I try to look at the pros whenever I can,
My Netflix queue finally reads zero again.
No more steroids, or pills, or injections each week.
No more flare ups or enemas every night for two weeks.
I was never in charge, colitis was always my boss.
I can’t even imagine how much toilet paper money I lost.
I’ve got so many to thank, you all know who you are.
I’ve got JP and Osty and a house full of cards.
I’ve really got everything I guy like me needs.
but it’s the one thing I don’t have, that’s still hard to believe.
After 10 years of torture and all of this grief.
I finally don’t have a stomach disease.
Thursday – August 13th, 2015
oops. It’s been a while again. Sorry. I’ve been super busy catching up on work, getting stuff in the office done before my next surgery in A WEEK from today, AND trying to close on a condo. STRESS. I had a pouchogram yesterday up in Chapel Hill. Let’s talk about that for a second. Basically you lie down, they stick a catheter up your bum bum and they squirt contrast in your pouch. They have you move from side to side and snap some X-rays and you’re done. For all of you about to get this procedure done and are told it’s just a bit uncomfortable……that’s true. Kind of… The contrast is not bad at all. You barely feel it. And being someone who’s dealt with a lot of enemas in 10 years of fighting this thing, it’s bearable. Unfortunately, I don’t have 10 years of sticking a catheter up my butt. (Insert inappropriate jokes here.) not exactly sure what unit of measurement they use as the diameter, but let me set up the situation. One butt Doc says to the other butt doc, what size you want? To which head doc replies, “the 22.” Now, at this point I don’t know what that means. I have nothing to compare it to. Is 22 big? Or is 22 small? Secondly, why the hell are there different sizes? Right? I mean, can there not just be one size, the smallest a tube has to be to squirt liquid into a butt? that’s what’s going through my mind. BUTT what do I know? I’m no doctor. So, I lie on my left side, as directed, on a rock hard cat scan table. 2 minutes in and already my hip feels as if Mike Trout just took batting practice into it. Head Doc proceeds to stick 22 catheter up my Butt. This sucks. The first thing he says to me, “relax those muscles…don’t clench.”
….uhhhhhh. Don’t clench?? Relax my muscles?? Dude, you literally just stuck a 22 (still have no idea what unit of measurement this is) catheter up my ass, and you want me to relax my muscles. Dumb. I’m a pretty tough kid, I can deal with pain, getting blood is nothing to me, physical soreness and pain from the surgeries, though bad and uncomfortable, I can deal with. Internal pain, and butt stuff…I don’t like. Can you blame me? So Head Doc, after about 7 or 8 seconds of maneuvering the thing trying to get it far enough in, decides for whatever reason it’s not working…so he takes it out. Good right? NO WRONG. Now I know he’s got to start over, go back in. So, before I can even recoup and psych myself up for the next go, head doc is already at it. And again, for whatever reason, unsuccessful. He pulls it it out again. There are two other people in the room. Another doctor, who was squirting the contrast, and a nurse making sure I was comfortable and doing the dirty work. Taping the catheter, holding the bag of fluids, walking me to bathroom. She was super nice. Anyway. Head doc pulls out a second time. And the second doc says, “should we try the 18?”
!?!?!?!Uhhhhh. Yes we should try the 18. Why in gods name did we not start with the 18??? I don’t know much about this procedure, but I do know it’s not a race. So will contrast not drain through as fast now, or as much at once?? So what? I can’t see how that could matter. I’m going to go a bit off subject here, but this related and reminds me of this exact situation.
A very funny spoof movie on Comedy Central, WINDY CITY HEAT, basically about a gigantic prank on one man. He thinks he auditions, and gets the lead role in a feature film, and shoots a whole stupid movie, without knowing that it is all completely setup. He is the only one not in on the joke. All his friends are behind it and make it very stressful for the guy. I couldn’t even begin to explain. Anyway, there is one scene where the main character is tied up being held captive. In the scene one henchman is to grab a bat and hit him with it. The director puts two bats in the scene. A red bat. And a blue bat. The important instructions for the henchman that the director shares in front of our lead man, “the blue bat is rubber, the red bat is a real wooden bat. So do not use the red bat.” Of course they start scene and the first two takes the henchman grabs the red bat and goes to wind up and tee off on our main characters head, until the main character speaks up and goes “NO NO WAIT” he gets super super angry and after about 4 takes where the henchman continues to mistakingly grab the wrong bat, he ends up screaming, “WHY IS THE RED BAT EVEN THERE!?”
Ha. A classic. All that set up for the last line. And the point of the story. I couldn’t help but think of that as she asks, “should we use the 18?” “WHY IS THE 22 EVEN THERE!?”
Haha ok. I think I’m overtired. To sum this up. With the 18 it was completely fine. They got it in fine and once it’s in its not painful at all. It took about 4 minutes and they took it out, let some contrast drain out of my bottom and then that was that. I went to speak to surgeon. All good things, on track for surgery as long as the results from that test were good, (which they were) and CT Scan tomorrow is good. I’m crossing my fingers it will be. I have to wake up at 630 to start drinking gross contrast. Appointment is at 830. Then a full day of work. And then the weekend. 4 more work days until surgery. Surgeon did say although they aren’t going inside me and that the surgery isn’t quite as involved as the last two, it is a lot more painful. They’ll be putting the ileostomy back inside my stomach and in doing so will be stitching up the muscle there. Ouch. On top of that the gas pains are pretty severe from what I hear as everything starts working. As long as nothing goes near my bottom I think I’ll be ok. My friends Osty and Morphine will get me through the pain. And you guys too!! Thanks for stopping by. I’ll let you know when I get results from CT scan. If you have any questions feel free to comment or email. Oh, and one more thing. As for eating and drinking with the ileostomy. It is certainly true that it’s much more sensitive to foods than the colostomy. You have to be much more careful. There’s no pain, but it can get real watery, and frequent. And it’s just not worth it. Leaks at night and changing the bag at times when you shouldn’t be, is an absolute nightmare. I haven’t really drank any soda this period and I had two tonight with dinner, and a salad. And I paid for it. I had to empty my bag three times in an hour and am super nervous that I’m gonna leak tonight. I took Imodium and put two absorb packets in my bag to harden the stool. I usually only put one in, but playing it safe. I don’t know what I would do without those. They are a MUST if you deal with very liquid output. Alright! That’s all. If you take one thing from this post, it should be, watch WINDY CITY HEAT.
Saturday- August 8th, 2015
Its been a while. Things have been good. No problems. Last night was the first night in almost two weeks I leaked a little out of my bottom. It was during the night and in the morning more came when i sat down on the bowl. I was relieved because I thought maybe going too long was a bad thing. Anyway, everything has been relatively quiet. Wednesday I go to chapel hill for a pouchogram. They shoot stuff into the pouch to make sure everything is ready for surgery, the following Thursday! Dr also requested I get another CT scan.. Which is proving to be a bit inconvenient. I can’t do it Wednesday because the contrasts would interfere, so I have to try and do it Tuesday around here. It’s hard for me to miss anymore work, but hopefully I can figure something out. Hopefully the next two weeks fly by. Crossing my fingers that the next two weeks I continue to feel healthy! Thanks for stopping by.
Sunday- August 2nd, 2015
HEY
Real quick post before bed… I’ve been feeling a little better each day. I haven’t leaked out of my bottom in almost a full week. I certainly am happy about that but now am concerned it may be too long since I have. There’s no winning. My bag leaked twice in one night two nights ago. That was very frustrating. Tomorrow I head back to work for the first time in almost a month. Yikes. We’ll see how that goes, I’m sure I’ll be real tired. 18 days until surgery, can’t come soon enough.
Flared 