Let’s talk. Last night I had my first two Captain and Cokes. Did I come to regret them? Did I get more gassy? Did I get drunk? No…no…and Nahhh. Everything was fine. I’ve actually been feeling pretty good this week. Moving around a little better, getting out of bed a little better, not getting as tired so early. Bending over to put my shoes on is still a bit uncomfortable and wearing a belt is no fun. Speaking of belts, my stealth belt will arrive tomorrow with hours to spare before my flight to Boston. Today my skin was a bit itchy, I’m scared it may be irritated under the bag, we’ll see tomorrow. I’ll be switching my bags to the same type of bag but my new ones have a filter. The filter allows the gas to release itself without me having to do it manually. I usually have to wake up in the middle of the night to release some air because my bag balloons so I’m glad to have these new bags. Not sure why they even make bags without filters. All in all things are good. I’ll be traveling this weekend. So new obstacles. I’m hoping to avoid any and all problems. Excited to report my stomach butt is healing nicely and I’m doing well. I wish I’d be gaining weight a bit faster but that’s out of my hands. Next time I check in I’ll be back in my old stomping grounds. Looking forward to seeing the guys. Thanks for reading!
Month: April 2015
Monday – April 27th, 2014
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!
Friday – April 24th, 2015
It’s late- so I’m going to make this short. The days have been long. Work is good, but tiring. By the time five rolls around I’m ready for sweatpants and bedtime. Last night was the first time I had real loose stool in my bag when I went to empty. They recommend taking Imodium, to avoid dehydration. I think it was just because of my change in eating habits. I was on such a routine at my parents, eating at the same times, when I got home I was eating a little less and not at the same times. Today after work I came back to my parents. After a good dinner everything seemed back to normal. I’m getting a little bit stronger each day, I think. My movement is better. Bending is still uncomfortable and I hope at some point that goes away. I’m anxious for the belt to come as I’m almost positive that’ll help big time. All I need is time. Everything is going to plan, just have to be patient. That may be the hardest thing at this point. Being close, feeling ready, but still getting real tired and not having the strength or weight gain id like. I weighed myself tonight. 120.5… 10 pounds more than 2 weeks ago. I can live with that. I’m going to keep on eating, keep on drinking… (Gatorade…relax) and try and keep a good attitude. I’ll touch base on Sunday after my next bag change. Goodnight all.
Wednesday – April 22nd, 2015- Home At Last
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.
Monday – April 20th, 2015 – Three Weeks Down
It has been three weeks since surgery. Although after a long day and a stressful night, it’s pretty crazy to think how far I’ve come. Let’s start at 8am. A song by Grace Potter and the Nocturnals woke me up for my first day of work in almost a month. I was excited to get out of the house (sorry mom….and Osty) I had a pile full of stuff ready to go. It was the first time I had to actually wrap a belt around my waist…. not the most exciting thing. Always make sure you have extra supplies with you at all times god forbid something goes wrong. You never know. I got to the office a little after 9. It was nice to see people I hadn’t seen friday and everyone was super nice and supportive of me being back. A lot of, “take it easy’s” and “don’t over do its” were sincerely mentioned by more than one person. I am lucky to have a super cool boss as well that has been great through this whole thing. Work can be a stressful thing, especially the news. I was able to focus on my recovery and not worry about work related issues this whole time. That was really great. He didn’t burden me with much today. He understood I might have to duck out early if I was too tired or just wasn’t feeling up to being there. I made it until 4:30. But boy was I wiped. My mom drove me to work because I still don’t have the strength or flexibility to confidently drive a car, but that will change in the next day or two. Mom arrived at 4:20 to pick me up. After a whole day of walking around and getting up and down I was tired. A little sore, but more tired than anything. The getting up and down part is the hardest. It just takes a lot of work to pull yourself up with a still very weak abdomen.
By the time we got home I was pretty exhausted. Overall there were no major hiccups. Everything went to plan. A successful first day of work. All the supplies I had ordered had arrived today. Included in the shipment was a wrap. Something meant to wrap around the stomach keeping the bag in place allowing for my support and comfort. We decided to try that out after dinner….this was a mistake. Let me try and explain…
As time goes on I am learning and understanding more about different pouches and why some are better than others. two piece pouches consist of, yes, you guessed it, two pieces. One being the bag itself, and the other being the “flange” or circular piece that has the adhesive part on one side that sticks to my stomach with a hole in the middle for the stoma. I take the protective piece off the sticky end and carefully lower and stick to my skin. (stoma goes through center hole) Now, I take the bag that has a hole the same size of the flange and place that over the stoma and snap it to the flange. That, in the simplest of explanations, is a two piece system. Now I can safely go to the bathroom into the bag, without anything getting on my skin. The other bag I tried last week, that I did not like as much because of the amount of sticky adhesive was on the flange, had a much better “snapping” mechanism. On that bag you just had to snap the top and you could twist the bag vertically or horizontally as you saw fit. (without having to take apart the two pieces and exposing the stoma. This pouch, for those of you wondering, was the colopast pouch. The one that I am currently wearing, a Hollister Brand, must be snapped off. Here is why I am explaining this to you. Thie wrap that I got today, requires that the bag be put horizontal so that it can easily be tucked into the wrap. That means I have to unsnap the flange and pouch. I was a bit uncomfortable doing this for a few reasons. For one thing, I am still a bit sore there and pulling the pouch off the flange will require a bit more force than I am comfortable applying at this time. Second, anytime you play around with that part, where the adhesive is, you cause more likelihood of a possible leak occurring. Thirdly, it could be messy if I didn’t do it quickly, and it was my first time so I was unsure how it would go. I took the bag off, a bit slow at first and was nervous once it was off that I wasn’t going to get it back on. It stressed me out and aggravated me. I finally got it on.
At this point I am tired. Almost a full days work, certainly the most I’ve exerted myself physically and mentally (besides a few jumbles and Jeopardy) in a long time, I was in no mood for this. The wrap to a second to get figured out. Where to snap what and how far and where the bag went. Finally I got it. When all was said and done. I wasn’t happy. I didn’t feel more comfortable or more support at all. In fact I was more paranoid now because although I could probably sleep on my right side I didn’t like the fact that I could easily look down and see if my bag needed emptying, or if there was a leak. Moral of the story… this wrap wasn’t for me. It isn’t to say it isn’t for everyone. I just don’t like the whole horizontal bag thing. Not yet at least. I have been searching forums online and haven’t found a decisive yes or no on whether it is even possible to empty a bag that is on sideways. If you have any insight into this, feel free to comment below! Another belt I have on the way, a “stealth belt” (link is on the tab to the right) is supposed to be much better and I believe my bag can stay vertical and I just tuck it up and into the belt. We will see. I got into bed feeling frustrated. Quite frankly I am ready for these four months to be over. I just want this all to be behind me. We’re all entitled to a few bad nights right? I’m going to bed. Day two of work tomorrow, let’s hope I wake up a little bit stronger and without any leaks.
Saturday – April 18th, 2015
i fell asleep last night at 3 am. I cannot seem to fall asleep. I woke up at 9, suprisingly awake given the amount of sleep I got. I’m still tapering off the prednisone, and am currently on 2.5mg for a few more days. It’s really killing my joints. Only in the morning really. My fingers today are the worst and my right elbow and hip. As the day progresses it gets better, but really drives home the fact that this medicine is terrible and needs to be out of my system.
I took a shower and then sat down in the bathroom for my next bag change. I decided to go with the original bags, though see-through, definitely more comfortable. It took a bit longer to get this bag off because the piece that sticks to my skin is a bit larger meaning more to peel off of my skin. No fun. Also, my stoma was a bit….active…throughout the whole changing process and I had to allow for that. (I was pooping a lot) Usually by changing in the morning you can avoid that but today was a different story. On the whole my skin looked pretty good. There was a tiny bit of red on the right side of the stoma that I thought might be a bit of irritation so I used some powder to try and fix that. All in all id say it was a successful change even though it still is taking me about 30 minutes on average. Practice makes perfect. I ate some breakfast and took a nap for an hour. It’s rainy and crappy here today so I haven’t been out for my daily walk. Just being a bum sleeping and watching Netflix.
It finally cleared up so I took a walk around the cul de sac before dinner. I’m noticing I’m moving around much better than I have been. Pulling myself up is still tough. Not painful, just tough. Again, no muscles there. You don’t realize how much you use those ab muscles until they’re not there. Its 9 now so I plan to watch some TV and get to bed soon. I’m feeling tired so hopefully tonight won’t be a repeat of last night. Tomorrow is my last day of lounging before I attempt to get back to work. Getting up and out will be a good step in the direction of getting stronger!
Until next time, thanks for keeping up and I’ll be back soon!
Friday – April 17th, 2015 – The Day The Earth Stood Still
Okay… not really, but by three in the afternoon I honestly thought it was midnight. I woke up at six in the morning having to pee… a downside to making sure I am staying hydrated. My bag was fuller than I had expected, given I had emptied it before bed, so I decided to empty it again… less chances of leakage with an empty bag while you’re sleeping. Sleeping is not getting much better. I really can’t seem to get comfortable. I’ve been a bit better about lying on my right side, but it takes some getting used to. A shipment of a supplies is due to arrive in the next day or two and I ordered something I wrap around my stomach that should keep the bag in place more and should help with the comfort, especially while sleeping.
Anyway, after my early morning relieving of all fluids, I got back in bed and slept for a few more hours. I woke up and for the first time had plans for the day that involved more than Netflix, reading, and Wheel of Fortune. The plan was to go into work for a little, head back to my house in Myrtle for a bit, and head to the bank to open a new account. Daunting!
It was nice to see everyone at work. The plan is to return monday.. in what capacity, I am not yet sure, but if I can make it a whole day, good for me (I’m not optimistic.) The important thing to take from this is it’s coming up on only three weeks since surgery, so the fact that I am even entertaining the thought of going back to work, is pretty awesome. Don’t get me wrong, standing for a long time is tiring, and I look like a fool trying to shimmy my way up and into a car, but I am certainly getting better. My advice is to try not to sit and dwell on the pains and soreness, because only time will change that and that’s out of your hands. Be patient! I’m not sure if I am trying to convince you or myself of that, but regardless… it’s true. After about 30 minutes at the office I headed back to my place with my mom. I got to see Abby, the cutest dog in all the lands. Then I headed to the bank to open a new account. I imagine I looked like a fool trying to act like it wasn’t the most difficult task to sit up in the chair to sign some papers, but I’d argue I nailed it (you’d have to ask Drew at Wells Fargo to be sure though.)
It wasn’t until about three that mom and I got back in the car and headed back to my parents place. BOY was I tired. You’d think I just ran a marathon. Getting in and out of the car was taxing. Not painful, just difficult because of how weak I am. I’ve mentioned a few times to my mom about how uncomfortable the bag still is on my stomach. My biggest fear is that won’t change. It also sucks that laughing is still super uncomfortable. My buddy sent me a text so funny that I had to force myself to think about something else just to stop from laughing so hard. I don’t know that it hurts, but it just feels odd.
We got home, I ate some dinner, (pizza) watched Wheel of Fortune, (obviously) and watched some Netflix before bed. It was a successful day for sure. I was out and about, I was moving around more than any other day, and although I’m tired, I’m in no pain. Tomorrow is day four since bag change, so depending on my mood in the morning I may change it… we’ll see. Although there has not been a leak that I can see, I am nervous about taking this bag off and noticing that there was a small leak that hadn’t made it’s way passed the adhesive. Every now and then I’ll feel a sting or a tiny pain, (very tiny) and I get paranoid it may be the acid irritating my skin. What I hope is its nothing. Just a piece of hair being pulled by the adhesive. I won’t know until I change my bag and when I find out, I’ll know for the future whether or not I’ll have to watch out for those pains or not. Trial and Error.,,, man I hate this sh*t. (only second poo pun this whole time.)
Osty is my make shift pillow tonight. I think he’s a little upset I left him alone all day… he’s got some serious attention issues that we’re trying to work out. (Don’t worry, we’ll pull through)
Bedtime for this guy, let’s hope I fall asleep fast, and stay asleep!
Thursday – April 16th, 2015
The day has been quite simple. It started off slow because of a combination of laziness and me wanting to finish a book I was given by a friend, Nick Offermans, Paddle Your Own Canoe. I strongly recommend. Equally funny and thought provoking. Pulling myself up and out of bed is still a task in itself. I’m wondering when I’ll become less aware of the bag on my stomach, a bit stressed that I may never quite get there.
After I finally managed to totter myself out of bed I took a short walk around the cul de sac. I mentioned that I had tried a sample bag this time around, one in which you cannot see through. This bag is of the coloplast family and I’d like to share with you a few pros and cons of this type of bag. The biggest con, and one I find to be a deal breaker for me is the adhesive around the bag. It’s just too big. The least amount of adhesive I have to pull off my skin when it comes time to change my bag, the better- and although I have not yet changed this bag, I fear it may be a long Saturday, when it comes time to do so (given there’s no leaks beforehand.) On the other hand, I have yet to have a leak, at least one I’m aware of, so we’ll jot that down in the pro column. Lastly, the material of this bag makes it much easier to empty. I use less wipes than the original bags (Hollister) though that is not the biggest concern of mine. I’d rather sacrifice a few extra wipes for less tape on the skin.
At around 4 I got another headache. Right above my right eye. I’m not sure if it’s because of the change of sleeping patterns of what, but I’m getting sick of them. I took two Tylenol that seemed to help a bit but still, frustrating.
Anyway, time for dinner… Steak! Yum. I’ve got myself a good cook and the best mom! Heading to work for a little tomorrow to show face and do some stuff around Myrtle with mom. First time out of the house, so we’ll see how it goes! Osty will hold down the fort, as he does so well.
Wednesday – April 15th, 2015
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
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.
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.
Flared 