chapel hill

Thursday – August 13th, 2015

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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.

Monday – April 27th, 2014

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It’s been 4 weeks since surgery. The days following surgery seemed to drag. I remember thinking a few times that I just wanted to fast forward a few weeks so I wouldn’t have to deal with all of this. Now here I am. I’m a little less tired than I was last week.. granted it’s nine and I am in bed. I am definitely moving around much better. Bending up and down and lifting my legs are still tough… not because of soreness or pain, but because I am just weak. Also, it feels a bit uncomfortable to bend down, especially when I have a belt on and it’s right up against the bottom of the bag. I am still waiting on the stealth belt. No real problems to report bag wise. Everything seems to be going okay. I weighed 111 pounds at my 2 week check up… I weight 120 pounds now, at least that’s what the scale at my house reads. (not 100% reliable) The point is, I am getting some weight back. It’ll just have to take time unfortunately. I have been waking up at night at least once to release the air from my bag. I am now realizing that there’s no reason to get a bag without a filter. With a filter you can avoid having to open the bag to release the air. With a filter it takes care of it for you and is odor free. A huge plus. Why they even have bags without the filter is beyond me, but is certainly something I wish I knew before I ordered 20 bags without one. My nurse (mom) is going to call for me tomorrow and see if we can get a sample of a bag or two with the filter. That would save me a lot of middle of the night wake-ups and trips to the bathroom to let the air out myself. We’ll see how it goes. I am ready to be back to normal. I also have not tried to drink yet. After work tomorrow will be my first experiment. One Captain and Coke. Wednesday I’ll do two, thursday three, and so on until my bag explodes, or until I do… I’ve got to test my limits. Also, if I can’t swing a golf club soon I’ll certainly lose my mind. The weather is getting real nice here… I need to play. My next bag change isn’t until Thursday morning.. the day of my trip to Boston. I’ll check back in then! Oh, one more thing.. tonight I dumped out a bottle of LIALDA and 6MP. That sure did feel good. Also, I’ve been off Prednisone for a week, and I’m feeling real good!

Wednesday – April 22nd, 2015- Home At Last

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It has been exactly 40 days since I left my house in Myrtle Beach. It’s crazy to think how much has happened in that 40 days. I have been at work for the past three days. I get in around 930 and have been leaving later than I had anticipated I’d make it- around 4:30-5. Getting up and down is super tiring and by three I’m pretty wiped. Today the bag was more “apparent” than I feel it usually is and I am not sure why. It feels heavier to me, or just pulling more even when it’s empty. I had ordered a stealth belt a few weeks back and am hoping that arrives soon, I feel like it will be a big help. For those of you who are unfamiliar with the stealth belt, there is a link to their site in the side bar on the right, check it out.

After a busy day at work my parents met me down in Myrtle and took me and a buddy to dinner. They also had a car load of clothes, supplies, etc… all things that I’ve accumulated over the past month. After dinner I headed home, driving for the first time, My movement still isn’t great and I had to rely on my mirrors more than I’d like to admit, but it was fine. The getting in and out of the car is the hardest part.

My buddy helped me bring all my stuff in and I finally made my way to the couch. I could have fallen asleep right there. It sure is nice to be home though. We chatted for a bit, watched a little TV, but by eight I was wiped. I headed upstairs, put a few things away and hopped into bed. After I finish typing this up I am going to throw an episode of Homeland on (I’ve got some catching up to do) and then I am going to fall into a very deep sleep. Although I am progressing nicely, I just wish it was happening faster. Yes, I am getting stronger, Yes I am getting healthier, but the zero muscles in my stomach thing is getting old. Getting out of my chair is still a chore. Laughing or coughing, still impossible. Do you know how frustrating it is to not be able to laugh hard? Also I am still more sore than i’d like to be around my stoma. Everywhere else on my stomach is okay. Bending down to put my socks and shoes on simply put, sucks. I know you can’t just gain back 40 pounds over night. I know that I was extremely sick a month ago and time is the only cure to all of this. But I am ready. I head to Boston for a Bachelor party a week from tomorrow, and I hope to be 10 times better than I am today. I am being optimistic. I haven’t told Osty I’ll be leaving home for a few days, so keep that between us, that’s not an argument I feel like having tonight. God, I have to get a life. Okay, until next time….oh wait, I also saw a cool shirt today on an ostomy site with the phrase, “LIFE TAKES GUTS” I thought that was cool.. Clever line. Okay, I’ll report back in with how I am doing in a day or two. Thanks for reading and obviously HAPPY EARTH DAY.

Wednesday – April 15th, 2015

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I woke up feeling not so refreshed to Hozier’s, Cherry Wine at 7 on the dot. Another not so good night of sleep of which I am getting quite tired of. (pun?) 

We were off to Chapel Hill for the first check up since surgery. Osty stayed home… he wasn’t feeling great (I think it was something he ate.) I was excited to hear first hand that I was progressing in a timely manner. That all the small hiccups along the way were normal and to hang in there.

The three hour drive went fast with the help of some Pandora and Nick Offerman’s book Paddle Your Own Canoe. 

The doctor came in (30 minutes late) with nothing but positive things to say. He actually is a real good guy and definitely helps put my mind at ease regarding the speed of my recovery and everything that goes along with it. They sent my colon out to make sure it was in fact colitis and not crohns… The results were what we expected, it was in fact a severe case of colitis. No crohns. No cancerous cells. All good news. The stitches were removed…this hurt. Way more than I expected. He reinforced the fact that I was real sick and that it would take time to get healthy again. That patience was important. We scheduled an appointment for a month from now to check progress and discuss the next surgery. That was that. We left and I decided I needed to empty my bag. This was the first time I’d be emptying my bag outside my house. A bit intimidating, especially given the fact I didn’t have any wet wipes with me. In short, things were fine. It just took a bit longer using just toilet paper…don’t forget your wet wipes..ever! 

 

Half way home now. I just had to blow my nose for the first time… I didn’t have the strength to blow, so there’s that. I’m going to try and sleep. When I get home, I’m going to stuff my face.  I’ll check in tomorrow or the next day. Until then, thanks for continuing to keep up with the recovery. If you have any questions, don’t hesitate to reach out! 

Tuesday – April 14th, 2015

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I woke up feeling pretty good. I had a bit of a headache again as I tried to fall asleep last night. I was tired of not sleeping, so I took an Oxy. It took a little bit for me to get to sleep but once I did I stayed asleep until 6. I had to pee. My bag was fuller than I had expected given I emptied before bed… so I emptied it too. I went back to bed and woke up around 9. I received sample bags yesterday that were a bit different than the bags I’ve been using since surgery. This one is more aesthetically pleasing as it is not see through, I liked the idea of that. I was worried about throwing a wrench in what was already something I wasn’t 100% comfortable doing. The instructions made it seem like it was similar enough process that I was confident it was worth giving it a try.

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Before we get to the changing of the bag, I’d like to mention one thing I have not yet mentioned that is important. I’ve read on multiple forums and online more than anyone had mentioned to me in the hospital about passing “mucous” from your rectum sometimes. This is absolutely true. It happens. Almost every morning I have the urge not to necessarily go to the bathroom, but I know that I have to sit down on the toilet. There’s no need to push or force anything, just sitting a bit will allow it to drip out and that’ll be that, but it does happen more often than I had thought it was going to happen, so be prepared, and don’t worry if it happens.

I got out of the shower, and began. It took me a bit longer than I had hoped to get the bag off with the adhesive remover. I figure this is because it hasn’t been that long since my last bag change and the adhesive is still stronger than it would normally be. I can tell I am getting a bit better about handling and touching my stoma, but definitely still have a long way to go. Eventually, the new bag was on. My initial opinion. Not happy. I had to lie down for a second once it was on because I felt a tiny bit dizzy, and was trying to avoid another passing out episode…I couldn’t risk waking up to my dad in his underwear twice in one week. It passed, but I still was a bit uneasy about how well the bag was stuck to my skin. One of the most important steps is to push firmly around the stoma to make sure the circular part of the bag that sticks to the skin is pressed hard against the adhesive to avoid leaks. Because I cannot see through the bag it was hard to get my fingers in and around the stoma completely. I did my best and covered the stoma with my hand for five minutes to allow for the adhesive to melt a bit. The only other thing I’ll say about these bags is that the adhesive that sticks to the skin is much more uncomfortable than the other bag. It’s a bit bigger so it sticks to more skin and the material seems to be a bit stickier, what I fear may be a bit more painful when it comes to take it off… we’ll see.

i ate some breakfast, waffles, fruit loops, and a bagel, and went back to bed for a few hours. I wanted to sleep a little more today than usual because sleep is important and I feel I haven’t been getting the amount of rest I should be. I woke up at around 2 and was feeling pretty good. My stomach around the stoma was a bit sore and I never know if that is just from the surgery or me being at it more than usual today. That will be something I ask the surgeon tomorrow at my first check up since surgery. Also, because I’m paranoid of a leak every unfamiliar pain or feeling when I maneuver I am scared is a problem. Ugh! The Stress. I’m looking forward to the appointment and hopefully getting the stitches out of my incision. It will be nice to hear from him that things look good, that I am progressing nicely, and all my concerns are normal concerns that will fade with time. That’s tomorrow though, today I’ll continue to worry, it’s just my nature.

Monday, March 30th, 2015

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Surgery was scheduled for the afternoon. The surgeon stopped by to introduce himself. I think his visit was to help put my parent’s minds more at ease than mine. Don’t get me wrong, it was important that I liked and felt comfortable with the person about to open me up. And I did. He was nice. This is his job. He does this all day every day. I was confident I was in good hands.
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