We all have our anchors that hold us steady...

Hey out there....damn is it HOT. Hope everyone is keeping cool and enjoying their summer. I still haven't got in the pool. The insecurity is frightening. I haven't felt this uncertain about myself as a whole since the 'wonderful' awkward years of about 13-16. I'm so hyper aware of people looking at me, or noticing stuff. I'm sure it's mostly in my head but regardless... I got great new bags that are super light and conceal pretty well but getting dressed is really impossible. NOTHING works but a dress. Having to figure out how to conceal or finding something that will be comfy with the stoma just turns into too much work so I'm basically dressed like the 'People of Walmart' every day unless I absolutely have to go somewhere. So unlike me. At this point I don't care.
I've been pretty lazy this week. Just tired and the lightheadedness is still happening. I'm going to get a FULL blood work up done next week. Anything that could be contributing to it I don't have. I'm not realy anemic, I'm not dehydrated. It turns out I'm NOT hypoglycemic. My results were so low because there was a serum issue with my blood draw. I've had normal glucose levels since. I can't blame it on the heat because I barely leave the house. It's so hot, I'm too lazy and I don't feel like blacking out in public or while driving. I mean, I know that sounds super fun and everything, but I'll stick to feeling like that at home.
I always blamed my black outs and lightheadedness on my anemia in the past but I'm hoping the UC wasn't masking something else. How lucky would I be if there's something else to deal with.  Jackpot! (Not  a jackpot).
On that note- I just wanted to say how lucky I am to have Hubs in my life. Yes, we are married now, but when I first got sick we weren't and he was there every minute. He could have ditched me because of what a nightmare it was. He's fed me jello when I was too weak to feed myself and that's all I could eat, he's washed my hair when I was too sick and weak to do that. He's carried me upstairs when I couldn't walk. He's made me laugh hysterically when I couldn't see one bright spot in my situation. He's taken care of Daughter#1 like she's his own when I was in the hospital or too sick to do it. He loves me unconditionally even though I'm a pain in the ass and can be a bitch. He's my biggest fan and biggest support. He anchors me in the storm until it passes. He knows every single thing about what's going on and goes out of his way to learn more and research on his own. He stands behind my decisions that I have to make for me, even when they aren't the most convenient for him. He doesn't fully 'get' it of course, but I've never had to over explain myself. If I tell him, 'I'm not getting out of bed today' or 'I can't do dinner', that's it. I don't have to say anything else. He just takes over. I know I am lucky in that regard. When I've been in the hospital he's sat with me even when I was so drugged up I had no idea. He brought his laptop and worked just to be there. He earned the name Saint M a few years ago from my sister and me. It's true. I love him. He's my best friend. He makes my life better in so many ways.
I found some pictures he had from the past when I've been sick. It's from my first hospitalization. I wish I had more. I kick myself for not documenting everything more. I wish I could accurately describe how EVERYTHING becomes a big deal when you are flaring and really sick. THINKING about a shower would exhaust me. Being malnourished, anemic, your insides inflamed and dehydrated all at once is no picnic. When I needed 4 units of blood I was probably not far from death. I just kept thinking I could turn it around. I was stupid.

This first pic is Christmas morning 2009. I had lost a lot of weight in the few months. I had only gotten diagnosed the past summer and this was my first real flare. I spiralled out of control so fast. I was still working FT in pain, and getting sick 20+ times a day. Not sure how I did it. For an idea that's a girls sweatshirt size 14-16. I was small. It's actually ROOMY!

The next day I left work because I could barely stand up and was doubled over in pain. I went home and got in bed. My jello diet started. I ended up leaving my place and going to Hub's so he could take care of me. I was not good. Here's a real good shot of me falling asleep eating jello. What a wreck. Balled up in pain. I think this was the day I left for Hub's. Three days after Christmas.

Finally, we knew there was no option but the hospital. My symptoms started about a year before my first admittance.  I went in through the ER but my GI had called me in ahead so I didn't actually wait. The only vital they did was BP and it was so low they stopped and raced me to a room and double IV'ed me because basically my body was going into shock. One IV in each arm. Fluids, and blood and potassium and I wish I could remember it all. I hate hospitals, but was happy it was going to be over. I seriously started thinking I might die. I was probably right. Here's me in the ER. Actually HAPPY to be there.

I was in a week with this visit. I cried a lot. I was poked nonstop I looked like a junkie when I got out. Black and blue everywhere. CT's, Xrays, and the worst was a forced water enema for an emergency colonoscopy. I cried the whole time, begging to go home. The nurses aid actually cried because I was bawling and in so much pain. This single event is why I no longer have any shame. After the water enema(the whole thing is like torture), they give you like an old person toilet chair. Just in the middle of the room. That's where you let the enema 'do it's work'. Yeah- nice huh?! Just sitting there so horrified, I think I wanted to die. I will never understand these crack pot people who do enemas or go pay to have colonics ON PURPOSE. Your couldn't pay me.
I have felt excruciating pain so many times it is ridiculous.  I couldn't have anything in my system I think for 4 days. Not even ice chips, nothing. Four days. I think I may have a pretty damn good idea what starving really means. The pain is unbearable. You literally start to go crazy in hunger. Your thoughts get irrational. I was alive via IV fluids and nutrients but they kept me sedated because the stomach pain and the thirst was so bad.
 Here's me about 10 days after I got discharged. Bones. You can basically see my kneecaps pointing. I was 98lbs when I got discharged.
*side note- how do these chicks get 6 pack abs. Seriously. I was 98 freaking lbs and I still didn't have killer abs. Bitches.

After my discharge I never went into remission. I was in the hospital again by July. Even after that discharge I was still sick. Since my symptoms started the end of 2008, I was never symptom free. I felt the best and had the least amount of symptoms while I was pregnant but was still losing blood daily. I needed 2 units of blood before I had Daughter #2. At some point when I'm stable and not anemic and get past a year from a transfusion I will be giving blood when I can. I've had quite a few transfusions with multiple units per transfusion. I hope one day to give it back. My blood type is B- which is one of the more rare types so I know they need it.
Holy crap this is a long post.

Ok, last thing. I took a random pic to try to see how I looked somewhat normal. The FrankenBelly is healing nicely. I still have a halfway decent belly button so it's not so bad.

I hope everyone has a great weekend. Live your life. Don't put it off until tomorrow. Don't take your health, or your good days for granted. Thanks for reading. XO

Hey out there....damn is it HOT. Hope everyone is keeping cool and enjoying their summer. I still haven't got in the pool. The insecurity is frightening. I haven't felt this uncertain about myself as a whole since the 'wonderful' awkward years of about 13-16. I'm so hyper aware of people looking at me, or noticing stuff. I'm sure it's mostly in my head but regardless... I got great new bags that are super light and conceal pretty well but getting dressed is really impossible. NOTHING works but a dress. Having to figure out how to conceal or finding something that will be comfy with the stoma just turns into too much work so I'm basically dressed like the 'People of Walmart' every day unless I absolutely have to go somewhere. So unlike me. At this point I don't care.
I've been pretty lazy this week. Just tired and the lightheadedness is still happening. I'm going to get a FULL blood work up done next week. Anything that could be contributing to it I don't have. I'm not realy anemic, I'm not dehydrated. It turns out I'm NOT hypoglycemic. My results were so low because there was a serum issue with my blood draw. I've had normal glucose levels since. I can't blame it on the heat because I barely leave the house. It's so hot, I'm too lazy and I don't feel like blacking out in public or while driving. I mean, I know that sounds super fun and everything, but I'll stick to feeling like that at home.
I always blamed my black outs and lightheadedness on my anemia in the past but I'm hoping the UC wasn't masking something else. How lucky would I be if there's something else to deal with.  Jackpot! (Not  a jackpot).
On that note- I just wanted to say how lucky I am to have Hubs in my life. Yes, we are married now, but when I first got sick we weren't and he was there every minute. He could have ditched me because of what a nightmare it was. He's fed me jello when I was too weak to feed myself and that's all I could eat, he's washed my hair when I was too sick and weak to do that. He's carried me upstairs when I couldn't walk. He's made me laugh hysterically when I couldn't see one bright spot in my situation. He's taken care of Daughter#1 like she's his own when I was in the hospital or too sick to do it. He loves me unconditionally even though I'm a pain in the ass and can be a bitch. He's my biggest fan and biggest support. He anchors me in the storm until it passes. He knows every single thing about what's going on and goes out of his way to learn more and research on his own. He stands behind my decisions that I have to make for me, even when they aren't the most convenient for him. He doesn't fully 'get' it of course, but I've never had to over explain myself. If I tell him, 'I'm not getting out of bed today' or 'I can't do dinner', that's it. I don't have to say anything else. He just takes over. I know I am lucky in that regard. When I've been in the hospital he's sat with me even when I was so drugged up I had no idea. He brought his laptop and worked just to be there. He earned the name Saint M a few years ago from my sister and me. It's true. I love him. He's my best friend. He makes my life better in so many ways.
I found some pictures he had from the past when I've been sick. It's from my first hospitalization. I wish I had more. I kick myself for not documenting everything more. I wish I could accurately describe how EVERYTHING becomes a big deal when you are flaring and really sick. THINKING about a shower would exhaust me. Being malnourished, anemic, your insides inflamed and dehydrated all at once is no picnic. When I needed 4 units of blood I was probably not far from death. I just kept thinking I could turn it around. I was stupid.

This first pic is Christmas morning 2009. I had lost a lot of weight in the few months. I had only gotten diagnosed the past summer and this was my first real flare. I spiralled out of control so fast. I was still working FT in pain, and getting sick 20+ times a day. Not sure how I did it. For an idea that's a girls sweatshirt size 14-16. I was small. It's actually ROOMY!

The next day I left work because I could barely stand up and was doubled over in pain. I went home and got in bed. My jello diet started. I ended up leaving my place and going to Hub's so he could take care of me. I was not good. Here's a real good shot of me falling asleep eating jello. What a wreck. Balled up in pain. I think this was the day I left for Hub's. Three days after Christmas.

Finally, we knew there was no option but the hospital. My symptoms started about a year before my first admittance.  I went in through the ER but my GI had called me in ahead so I didn't actually wait. The only vital they did was BP and it was so low they stopped and raced me to a room and double IV'ed me because basically my body was going into shock. One IV in each arm. Fluids, and blood and potassium and I wish I could remember it all. I hate hospitals, but was happy it was going to be over. I seriously started thinking I might die. I was probably right. Here's me in the ER. Actually HAPPY to be there.

I was in a week with this visit. I cried a lot. I was poked nonstop I looked like a junkie when I got out. Black and blue everywhere. CT's, Xrays, and the worst was a forced water enema for an emergency colonoscopy. I cried the whole time, begging to go home. The nurses aid actually cried because I was bawling and in so much pain. This single event is why I no longer have any shame. After the water enema(the whole thing is like torture), they give you like an old person toilet chair. Just in the middle of the room. That's where you let the enema 'do it's work'. Yeah- nice huh?! Just sitting there so horrified, I think I wanted to die. I will never understand these crack pot people who do enemas or go pay to have colonics ON PURPOSE. Your couldn't pay me.
I have felt excruciating pain so many times it is ridiculous.  I couldn't have anything in my system I think for 4 days. Not even ice chips, nothing. Four days. I think I may have a pretty damn good idea what starving really means. The pain is unbearable. You literally start to go crazy in hunger. Your thoughts get irrational. I was alive via IV fluids and nutrients but they kept me sedated because the stomach pain and the thirst was so bad.
 Here's me about 10 days after I got discharged. Bones. You can basically see my kneecaps pointing. I was 98lbs when I got discharged.
*side note- how do these chicks get 6 pack abs. Seriously. I was 98 freaking lbs and I still didn't have killer abs. Bitches.

After my discharge I never went into remission. I was in the hospital again by July. Even after that discharge I was still sick. Since my symptoms started the end of 2008, I was never symptom free. I felt the best and had the least amount of symptoms while I was pregnant but was still losing blood daily. I needed 2 units of blood before I had Daughter #2. At some point when I'm stable and not anemic and get past a year from a transfusion I will be giving blood when I can. I've had quite a few transfusions with multiple units per transfusion. I hope one day to give it back. My blood type is B- which is one of the more rare types so I know they need it.
Holy crap this is a long post.

Ok, last thing. I took a random pic to try to see how I looked somewhat normal. The FrankenBelly is healing nicely. I still have a halfway decent belly button so it's not so bad.

I hope everyone has a great weekend. Live your life. Don't put it off until tomorrow. Don't take your health, or your good days for granted. Thanks for reading. XO

This, that and the other..

I want to start the blog off by saying that we have been in the upper 90s and this week going into our first week of triple digit temps. So what happened today?? The air conditioner for the 2nd floor stopped working. Naturally. It's 92 degrees upstairs. Luckily, the downstairs A/C is still working so we may be blowing up an air mattress tonight... I can't wait. I'm sleeping like crap enough...why not spice things up with an air mattress!!!
I'm currently shopping for a swimsuit. I guess a one piece. Or a tankini. I have no idea...I can't keep taking #1 to the pool and roasting. My new shipment of small bags comes tomorrow and I'm hoping they will work well with a swimsuit. This will be interesting. They are basically a disposable...they can't be emptied, just tossed out. Which is fine by me. Less work. But being the recycler that I am, it makes me cringe a bit. I'll have to get over it. My legs are completely albino looking too. I will probably blind half the people at the pool.
Things are going pretty well with the exception that I'm still slightly anemic and apparently hypoglycemic. My glucose was a 48 at last blood draw. Anything lower than 70 is bad. I'm not dehydrated which is surprising. I'm still having issues with lack of energy and feeling like I am going to black out. And it's always at the worst times, such as walking down the stairs. I've been afraid to go out and drive because of it. I got my glucose tested on Friday and it was 140 but I was STILL feeling like I was going to black out. So, I'm clueless. I've taken to eating lots of marshmallows, drinking sugary iced tea, and I'm sure my teeth hate me but it helps a bit.
Now- on to a very pressing issue- what to do with my hair? Stay blonde? Go darker maybe with some red? Grow it out, cut it more blunt? Keep the bangs??? The blonde is so damn high maintenance, but I feel like me that way. I like the bangs but think that bangs look better with dark hair. Maybe these decisions are keeping me up nights...that would explain a lot. Please feel free to comment with suggestions. I'm willing to give it a whirl! This is the mess I'm dealing with now----->

Things have been chugging along colon-free. I am stil struggling with dealing with the stoma and the bag issues. It really is such a pain and so gross. The most I can get is 4 days out of the wafer before it leaks. Today was day 4 for my last one, and I woke up at 6am with it creeping under the adhesive. Kind of annoying since Hubs and I stayed up watching TV until about 2am. I was NOT happy to have to shower and deal with the bag drama at 6am. Blah.
My teeny little stoma has shrunk to 3/4 of an inch. If it gets any smaller I'll have to order children's ostomy supplies. Not kidding. 3/4 of an inch is the smallest I can find for wafers in the catalog. I've got skinny guts. Ha...
#2 is zooming all over the place. It's hilarious. her personality has really started to come out the last few weeks and she's a total goofball. Not surprising. We had no chance of her being boring or "normal" with the genetic combination she got. She'll be fluent in sarcasm in no time. ;-D

All in all things have been good. The issues I'm still having are minor enough where I'm not in misery. They are more of an inconvenience than anything. I would like to get the hell out of dodge but that's not going to happen yet. Traveling anemic and dehydrated with low blood sugar sounds like a typical recipe for disaster. I don't need the drama.

On a different, weird note, today marks 2 years that I stopped working. It doesn't seem that long because being sick kinda takes the fun out of all that free time. I guess I'm reflecting and remembering mostly  because how it ended still stings. There is nothing worse than thinking you are doing the right thing, only to have the rug pulled out from under you by by people who aren't playing by the rules and have something to hide. Luckily, the people in the wrong ended up losing their jobs, but not before I was canned to protect the screw ups(and other inappropriate things) of someone else. I'd like to imagine I at least got the ball rolling in getting rid of those people who were not doing their jobs.
Either way, I paid for that which was unfortunate since I loved my job. I thought I was pretty good at it too. =(  If I had the energy, and didn't have health issues nonstop I would have pursued them legally. I just never had the motivation. Taking care of myself and my family meant more than suing the shit out of a pretty large company. I think the stress of that would have impacted my health negatively and I just couldn't afford that. Sometimes people get away with stuff. Sometimes I wish I had never had that meeting and had just kept my mouth shut. But I couldn't. I did it for my peers and hopefully now they are doing better because I "took one for the team". I miss many people and am glad for social media that I can still connect with many of them. Mostly, I miss loving something AND being good at it AND getting paid for it. I'm at the point now, at almost 35, trying to plan something new, and find a new way. It's difficult when every time you gain some momentum, a health issue knocks you back a few steps. I'm not getting any younger and want to take my life over again. It's going to take a bit longer, but hopefully, that day will come soon enough.
Thanks for reading. Hope everyone had a great weekend. Wish me luck on this bathing suit hunt. Yikes. ;-)

I want to start the blog off by saying that we have been in the upper 90s and this week going into our first week of triple digit temps. So what happened today?? The air conditioner for the 2nd floor stopped working. Naturally. It's 92 degrees upstairs. Luckily, the downstairs A/C is still working so we may be blowing up an air mattress tonight... I can't wait. I'm sleeping like crap enough...why not spice things up with an air mattress!!!
I'm currently shopping for a swimsuit. I guess a one piece. Or a tankini. I have no idea...I can't keep taking #1 to the pool and roasting. My new shipment of small bags comes tomorrow and I'm hoping they will work well with a swimsuit. This will be interesting. They are basically a disposable...they can't be emptied, just tossed out. Which is fine by me. Less work. But being the recycler that I am, it makes me cringe a bit. I'll have to get over it. My legs are completely albino looking too. I will probably blind half the people at the pool.
Things are going pretty well with the exception that I'm still slightly anemic and apparently hypoglycemic. My glucose was a 48 at last blood draw. Anything lower than 70 is bad. I'm not dehydrated which is surprising. I'm still having issues with lack of energy and feeling like I am going to black out. And it's always at the worst times, such as walking down the stairs. I've been afraid to go out and drive because of it. I got my glucose tested on Friday and it was 140 but I was STILL feeling like I was going to black out. So, I'm clueless. I've taken to eating lots of marshmallows, drinking sugary iced tea, and I'm sure my teeth hate me but it helps a bit.
Now- on to a very pressing issue- what to do with my hair? Stay blonde? Go darker maybe with some red? Grow it out, cut it more blunt? Keep the bangs??? The blonde is so damn high maintenance, but I feel like me that way. I like the bangs but think that bangs look better with dark hair. Maybe these decisions are keeping me up nights...that would explain a lot. Please feel free to comment with suggestions. I'm willing to give it a whirl! This is the mess I'm dealing with now----->

Things have been chugging along colon-free. I am stil struggling with dealing with the stoma and the bag issues. It really is such a pain and so gross. The most I can get is 4 days out of the wafer before it leaks. Today was day 4 for my last one, and I woke up at 6am with it creeping under the adhesive. Kind of annoying since Hubs and I stayed up watching TV until about 2am. I was NOT happy to have to shower and deal with the bag drama at 6am. Blah.
My teeny little stoma has shrunk to 3/4 of an inch. If it gets any smaller I'll have to order children's ostomy supplies. Not kidding. 3/4 of an inch is the smallest I can find for wafers in the catalog. I've got skinny guts. Ha...
#2 is zooming all over the place. It's hilarious. her personality has really started to come out the last few weeks and she's a total goofball. Not surprising. We had no chance of her being boring or "normal" with the genetic combination she got. She'll be fluent in sarcasm in no time. ;-D

All in all things have been good. The issues I'm still having are minor enough where I'm not in misery. They are more of an inconvenience than anything. I would like to get the hell out of dodge but that's not going to happen yet. Traveling anemic and dehydrated with low blood sugar sounds like a typical recipe for disaster. I don't need the drama.

On a different, weird note, today marks 2 years that I stopped working. It doesn't seem that long because being sick kinda takes the fun out of all that free time. I guess I'm reflecting and remembering mostly  because how it ended still stings. There is nothing worse than thinking you are doing the right thing, only to have the rug pulled out from under you by by people who aren't playing by the rules and have something to hide. Luckily, the people in the wrong ended up losing their jobs, but not before I was canned to protect the screw ups(and other inappropriate things) of someone else. I'd like to imagine I at least got the ball rolling in getting rid of those people who were not doing their jobs.
Either way, I paid for that which was unfortunate since I loved my job. I thought I was pretty good at it too. =(  If I had the energy, and didn't have health issues nonstop I would have pursued them legally. I just never had the motivation. Taking care of myself and my family meant more than suing the shit out of a pretty large company. I think the stress of that would have impacted my health negatively and I just couldn't afford that. Sometimes people get away with stuff. Sometimes I wish I had never had that meeting and had just kept my mouth shut. But I couldn't. I did it for my peers and hopefully now they are doing better because I "took one for the team". I miss many people and am glad for social media that I can still connect with many of them. Mostly, I miss loving something AND being good at it AND getting paid for it. I'm at the point now, at almost 35, trying to plan something new, and find a new way. It's difficult when every time you gain some momentum, a health issue knocks you back a few steps. I'm not getting any younger and want to take my life over again. It's going to take a bit longer, but hopefully, that day will come soon enough.
Thanks for reading. Hope everyone had a great weekend. Wish me luck on this bathing suit hunt. Yikes. ;-)

Oh dear, sweet September.

Hey there, hi there..
I am 4 weeks out from surgery!!!!! Feeling pretty good. As much as I can. Still some random soreness and fatigue. I have been trying to up my calories (how often do you hear a grown woman say that?) because I am so over being weak and light headed and underweight. Yes ladies, you CAN be too skinny. I've been there a few times. Skeletor is NOT a good look.  I've almost blacked out from being weak, dehydrated and/or anemic more times than I can count. Ugh. There is no worse feeling than walking along and suddenly the world starts closing in and and you are seeing spots and it's getting dark. The worst. Can't take it.
So I still have that going on. Hopefully, it's no big deal. I'm probably still anemic or could be dehydrated which is bound to happen given that I have no colon.
I've been having much better luck with my stupid bags. I'm going to try a smaller version and hopefully get in the pool soon. I need to battle my way through the catalog to figure out what to get. You have no idea how many ostomy products are out there. Talk about overwhelming. Ridiculous.
I went and saw my surgeon today and mapped out a game plan going forward. I initially thought I'd be able to have surgery #2 in August, but much to my chagrin we are planning(if there are zero complications), to do it in September.
August just doesn't put him in a comfortable time frame for adhesion issues, swelling, and inflammation. I was a little bummed out but I respect what he's saying. I don't want to make a dumb decision now and regret it later because it caused complications that could have been avoided.
The bonus is I will not be cut open again...he'll do everything through the stoma site. Ideally. So, I guess that rules out me getting a plastic surgeon to stitch me back together after surgery #2!! ;-)  Damnit. I was hoping for some rolled into one tummy work. FAIL!
He didn't make me take my newly applied bag off either!! I took a pic of my stoma Sunday and showed him and he was happy with what he saw so no wasted bag today!! Changing this bag requires a system I have locked down very adequately in my bathroom with my blowdryer. So, I was MUCHO contenta. See---->

This leads me to the fact that I won't be taking classes this fall. I am disappointed. I could wait until the semester ends and do it in December, but then if something goes wrong it may push my recovery into January(spring semester) and more importantly, a new calendar year which means paying my DEDUCTIBLE!!! We want to avoid that at all costs!
All in all I am happy with the plan. I have to wait a bit longer but I can't really complain. I know it will work out okay. And I won't be in recovery over the holidays so MAYBE Hubs and I can escape for a little R&R together. We need it. I need it.
I feel 100% better now. I don't know how anyone can struggle with this disease for YEARS, and DECADES and not want to get that broken, rotten body part out of them. I don't know how people can remain adamant that they avoid surgery and continue down a path of pain, and meds, and hospitalizations. After just under 3 years I was done with it all. I couldn't even consider keeping that rotten thing that was ruining my life in my body.
My surgeon said waiting another year would have put me at risk of the damn colon rupturing or perforating and making an entirely new nightmare. That thing was at the end of it's life and I'm happy I didn't try to save it. I owed it nothing!
To all my IBD'ers reading. Don't be afraid of surgery. My surgery was easier to handle than my hospitalizations for flares. I feel good. I can eat and not worry. I can eat and not suffer for 3 days after. I'm not in pain. I'm not talking 10 pills a day or getting biologic meds pumped into me. Now I'm running my life. Not some stupid Autoimmune Disease. I'm winning. I don't plan on that changing anytime soon.   =D

#1 tooth update- it is still intact. She is a wuss. She is now whining she can't get it out.... Mmmmhhmmm... Let me try!!  (insert evil laugh here).

Also, #2 is taking 4-6 steps pretty confidently. Time to put the house on LOCKDOWN! She is a wild one. I am screwed with both of these girls....Definitely not wallflowers, or shy.

I went and got myself a super deluxe hot stone, clay wrap, super size value meal pedicure today. It was soooo nice. And I like my new color.... Am I getting too old for obnoxious nail polish? Hope not.
Thanks for a fun chat Cassie!

Hey there, hi there..
I am 4 weeks out from surgery!!!!! Feeling pretty good. As much as I can. Still some random soreness and fatigue. I have been trying to up my calories (how often do you hear a grown woman say that?) because I am so over being weak and light headed and underweight. Yes ladies, you CAN be too skinny. I've been there a few times. Skeletor is NOT a good look.  I've almost blacked out from being weak, dehydrated and/or anemic more times than I can count. Ugh. There is no worse feeling than walking along and suddenly the world starts closing in and and you are seeing spots and it's getting dark. The worst. Can't take it.
So I still have that going on. Hopefully, it's no big deal. I'm probably still anemic or could be dehydrated which is bound to happen given that I have no colon.
I've been having much better luck with my stupid bags. I'm going to try a smaller version and hopefully get in the pool soon. I need to battle my way through the catalog to figure out what to get. You have no idea how many ostomy products are out there. Talk about overwhelming. Ridiculous.
I went and saw my surgeon today and mapped out a game plan going forward. I initially thought I'd be able to have surgery #2 in August, but much to my chagrin we are planning(if there are zero complications), to do it in September.
August just doesn't put him in a comfortable time frame for adhesion issues, swelling, and inflammation. I was a little bummed out but I respect what he's saying. I don't want to make a dumb decision now and regret it later because it caused complications that could have been avoided.
The bonus is I will not be cut open again...he'll do everything through the stoma site. Ideally. So, I guess that rules out me getting a plastic surgeon to stitch me back together after surgery #2!! ;-)  Damnit. I was hoping for some rolled into one tummy work. FAIL!
He didn't make me take my newly applied bag off either!! I took a pic of my stoma Sunday and showed him and he was happy with what he saw so no wasted bag today!! Changing this bag requires a system I have locked down very adequately in my bathroom with my blowdryer. So, I was MUCHO contenta. See---->

This leads me to the fact that I won't be taking classes this fall. I am disappointed. I could wait until the semester ends and do it in December, but then if something goes wrong it may push my recovery into January(spring semester) and more importantly, a new calendar year which means paying my DEDUCTIBLE!!! We want to avoid that at all costs!
All in all I am happy with the plan. I have to wait a bit longer but I can't really complain. I know it will work out okay. And I won't be in recovery over the holidays so MAYBE Hubs and I can escape for a little R&R together. We need it. I need it.
I feel 100% better now. I don't know how anyone can struggle with this disease for YEARS, and DECADES and not want to get that broken, rotten body part out of them. I don't know how people can remain adamant that they avoid surgery and continue down a path of pain, and meds, and hospitalizations. After just under 3 years I was done with it all. I couldn't even consider keeping that rotten thing that was ruining my life in my body.
My surgeon said waiting another year would have put me at risk of the damn colon rupturing or perforating and making an entirely new nightmare. That thing was at the end of it's life and I'm happy I didn't try to save it. I owed it nothing!
To all my IBD'ers reading. Don't be afraid of surgery. My surgery was easier to handle than my hospitalizations for flares. I feel good. I can eat and not worry. I can eat and not suffer for 3 days after. I'm not in pain. I'm not talking 10 pills a day or getting biologic meds pumped into me. Now I'm running my life. Not some stupid Autoimmune Disease. I'm winning. I don't plan on that changing anytime soon.   =D

#1 tooth update- it is still intact. She is a wuss. She is now whining she can't get it out.... Mmmmhhmmm... Let me try!!  (insert evil laugh here).

Also, #2 is taking 4-6 steps pretty confidently. Time to put the house on LOCKDOWN! She is a wild one. I am screwed with both of these girls....Definitely not wallflowers, or shy.

I went and got myself a super deluxe hot stone, clay wrap, super size value meal pedicure today. It was soooo nice. And I like my new color.... Am I getting too old for obnoxious nail polish? Hope not.
Thanks for a fun chat Cassie!

Is it August yet? No, seriously. Is it?

I ask if it's August for two reasons...
#1- I can get Surgery Part Deux done, and be on my way with being done with this UC nonsense.
#2- Daughter #1 is driving me mad. She is already bored with summer and wants to go back to school. She has been off exactly 2 weeks. OMG she's killing me. Our neighborhood is a ghost town too. There are a million kids around us, but it is silent and empty. Except for the neighborhood pools. It's weird to me because I grew up with kids all over all summer. You just walked outside and found a playmate. Daughter #1 is very social and likes to be with others. Playing alone is like torture for her. A lot of her friends from school are at camp or vacations etc...so no one has been around much. My energy level is still in the toilet so running around with her is not possible. I made dinner last night and thought I was going to collapse.
Ugh- So needless to say I'm scraping around looking for possible stuff for her to do that won't include me walking or standing too much. I'm still leery about leaving the house for long periods of time.

Things have been kind of hit or miss with me. I attempted to turn my wafer sideways(diamond shaped) to expose some more of my incision but that ended with an exploding bag less than an hour later. So I went back to the tried and true method. Well, far from tried and true, so I guess it's tried and truer.
My belly is looking a bit better. Considering. ---->

The raw area around the stoma is about half the size now thanks to some MAGIC paste recommended by Miss Cassie. I think it's made from unicorn horns or some shit, because it is seriously awesome. The incision is what it is. I don't really have a comment anymore. I'm not even going to concern myself anymore about what the final product will be until after surgery #2 because they'll be opening me back up. I barely have any feeling in the entire area below the stoma. I'm sure another surgery will not help those nerve endings, but oh well.

My dad was in town for over a week. It was nice having him here and Daughter #1 loves it. He's on the fence with moving, even though I know he wants to. I've been hesitant to devote a lot of time to searching for an apartment for him because he's been wishy washy about it. It would be nice to have some family around.
Daughter #2 is trying to walk which has been interesting. She seems afraid of more than one step. Or she's lazy. It's a toss up.
Currently, I am listening to Hubs tying floss around Daughter #1's tooth to tie to a door knob. Daughter requested this method. This tooth as been loose for about a year. I'm sick of talking about it. So she just asked Hubs to tie a string and slam a door. Has this method ever been proven? I'm staying out of that nightmare. I'll let you know what happens.

New pic of my girls and me. VIP is the most uncooperative photo baby EVER!!!!! ------>

Yes, it looks like I am topless. In my front yard. It reminds me of the SNL skit with topless Martha Stewart Christmas special. This is the ONLY pic where VIP is looking at the camera and it figures I'm topless. Patterned maxi dresses are my new BFF to hide my bag. Plus no waist line to deal with. Not to mention I've lost weight so nothing fits that can accomodate my bag. Either stuff is falling off or it fits too perfect but the bag won't allow me to wear it.
I give major props to people who voluntarily keep their ostomies. There are many in the IBD world who do. I am already losing my mind. I don't know how they do it.
UPDATE on tooth- Hubs saying, "This thing is ready to go, just hang on'. Holy crap.

On a different note I drove for the first time in 3 weeks. THAT is the weirdest feeling. Seriously. It feels like you are in a completely foreign situation. I was overachieving to say the least. By the time I got where I was going, I was hurting. And exhausted. Boo! Hub's sick of driving Miss Daisy and my dad is gone so...
I'm just over 3 weeks out from my summer class starting. That's going to be fun. It's at 8am everyday. I must have been drunk when I registered. Well, delusional at the least. Hopefully I'll have more energy and when I get home from class be ready to do some stuff with Daughter #1 because as of right now, laying on the couch is as ambitious as I'm getting.
Hoping to get stuff done around this house after surgery part #2. So much I've wanted to buy and do but no energy and drive to do it. Even shopping for area rugs is exhausting.  Hoping I'll be back to my shopaholic self my Christmas. Just in time to AVOID the mall at all costs! Too many years in retail. I just can't stomach the music, the mess, and nonsense.
I hope everyone is doing well. Thanks for reading as always. Have a great weekend, everyone!
Gutsy Broad- out. XO

I ask if it's August for two reasons...
#1- I can get Surgery Part Deux done, and be on my way with being done with this UC nonsense.
#2- Daughter #1 is driving me mad. She is already bored with summer and wants to go back to school. She has been off exactly 2 weeks. OMG she's killing me. Our neighborhood is a ghost town too. There are a million kids around us, but it is silent and empty. Except for the neighborhood pools. It's weird to me because I grew up with kids all over all summer. You just walked outside and found a playmate. Daughter #1 is very social and likes to be with others. Playing alone is like torture for her. A lot of her friends from school are at camp or vacations etc...so no one has been around much. My energy level is still in the toilet so running around with her is not possible. I made dinner last night and thought I was going to collapse.
Ugh- So needless to say I'm scraping around looking for possible stuff for her to do that won't include me walking or standing too much. I'm still leery about leaving the house for long periods of time.

Things have been kind of hit or miss with me. I attempted to turn my wafer sideways(diamond shaped) to expose some more of my incision but that ended with an exploding bag less than an hour later. So I went back to the tried and true method. Well, far from tried and true, so I guess it's tried and truer.
My belly is looking a bit better. Considering. ---->

The raw area around the stoma is about half the size now thanks to some MAGIC paste recommended by Miss Cassie. I think it's made from unicorn horns or some shit, because it is seriously awesome. The incision is what it is. I don't really have a comment anymore. I'm not even going to concern myself anymore about what the final product will be until after surgery #2 because they'll be opening me back up. I barely have any feeling in the entire area below the stoma. I'm sure another surgery will not help those nerve endings, but oh well.

My dad was in town for over a week. It was nice having him here and Daughter #1 loves it. He's on the fence with moving, even though I know he wants to. I've been hesitant to devote a lot of time to searching for an apartment for him because he's been wishy washy about it. It would be nice to have some family around.
Daughter #2 is trying to walk which has been interesting. She seems afraid of more than one step. Or she's lazy. It's a toss up.
Currently, I am listening to Hubs tying floss around Daughter #1's tooth to tie to a door knob. Daughter requested this method. This tooth as been loose for about a year. I'm sick of talking about it. So she just asked Hubs to tie a string and slam a door. Has this method ever been proven? I'm staying out of that nightmare. I'll let you know what happens.

New pic of my girls and me. VIP is the most uncooperative photo baby EVER!!!!! ------>

Yes, it looks like I am topless. In my front yard. It reminds me of the SNL skit with topless Martha Stewart Christmas special. This is the ONLY pic where VIP is looking at the camera and it figures I'm topless. Patterned maxi dresses are my new BFF to hide my bag. Plus no waist line to deal with. Not to mention I've lost weight so nothing fits that can accomodate my bag. Either stuff is falling off or it fits too perfect but the bag won't allow me to wear it.
I give major props to people who voluntarily keep their ostomies. There are many in the IBD world who do. I am already losing my mind. I don't know how they do it.
UPDATE on tooth- Hubs saying, "This thing is ready to go, just hang on'. Holy crap.

On a different note I drove for the first time in 3 weeks. THAT is the weirdest feeling. Seriously. It feels like you are in a completely foreign situation. I was overachieving to say the least. By the time I got where I was going, I was hurting. And exhausted. Boo! Hub's sick of driving Miss Daisy and my dad is gone so...
I'm just over 3 weeks out from my summer class starting. That's going to be fun. It's at 8am everyday. I must have been drunk when I registered. Well, delusional at the least. Hopefully I'll have more energy and when I get home from class be ready to do some stuff with Daughter #1 because as of right now, laying on the couch is as ambitious as I'm getting.
Hoping to get stuff done around this house after surgery part #2. So much I've wanted to buy and do but no energy and drive to do it. Even shopping for area rugs is exhausting.  Hoping I'll be back to my shopaholic self my Christmas. Just in time to AVOID the mall at all costs! Too many years in retail. I just can't stomach the music, the mess, and nonsense.
I hope everyone is doing well. Thanks for reading as always. Have a great weekend, everyone!
Gutsy Broad- out. XO

Nothin' like a kick in the ass...

I feel like I need to stop writing and saying out loud what I want to happen or what I hope happens, because every time I do, the opposite happens! Case in point; my last post. I was talking about how the bag I had on seemed pretty solid and I was hoping to leave it on a few extra days to allow for some extra healing time yada yada.....
Well, don't you know last night the bag freakin erupted. It had been such a nice night. I went to dinner with my dad and Hubs. It took all the energy I had to get ready and go out into the world. I feel so terrible about myself so I have lost the energy to get dolled up. So we went out. I actually had an appetite despite the ridiculous pain I had going on around my stoma. I had some salmon and some mashed potatoes but didn't over do it by any means. I'm seriously eating like a bird. I get full so fast. The meal was great. Daugther #2 ate salmon, crab, asparagus, avocado and a tiny piece of steak. She doesn't flinch at ANYTHING she tries. It is so wonderful!!!
So we get home. I pop some pain pills and change. I'm minding my own business laying on the recliner, and BAM! I'm wet. Ugh... Of course... because didn't I cancel my appointment with my home nurse telling her the bag survived the shower and it was on solid! Yeah- perfect.
So I run(not run) upstairs to deal with the crap(literally) that has become my life. This was around 830p. The thing about putting a new bag on is that the area has to be clean and dry and the stoma not leaking in order to prep the skin and get a new bag on. Well, my stupidface stoma would not stop. FOR HOURS. It was horrible. My skin hurt. I was on my bathroom floor crying. It was emptying like a Play Doh Fun Factory. I was miserable.  Here's a visual. Everything is a wreck. ----->

What blows my mind is how swollen everything is. I only weigh about 110 pounds. Looking at this gut, no one would think that's possible. Ugh....
Anyway, I've got a rash from the adhesive, I've got raw skin from stomach acid eating it, and I've got the staple wounds that keep getting reopened every time I take a stupid bag off. You can see the 3 staple holes at about 2, 3, and 4 o'clock to the stoma that are not filling in and healing. The rest are closed and fine but those three are not pretty. =(  The horizontal indentation is from who knows what because it wasn't there before surgery. I'm hoping my insides settle down and that fills in because it is just weird looking.
Finally at almost 11p the thing stopped. I showered, and used my blowdryer to dry the area because towels aren't an option. I used a variety of products to prep the skin and got a new bag on.
I have to keep trying to think ahead to August and the takedown surgery. If I focus too much on this I won't make it. Last night was just an out of control ending to the last few days. Exactly what I was trying to avoid happened.
I can't describe the frustration and stress I feel. At the same time, in the corner of my mind, I see myself in a year and know I'll be ok. This is temporary. I'm moving forward. I know that but for some reason that knowledge doesn't take away from the overwhelming feelings that have been cropping up.
I have my summer class starting the second week of July, so I am looking forward to that. It's a professor I had in the spring who I told about my surgery so I know I won't have any issues if they arise. The class will make things fly by to get me to August. I see my surgeon again the 19th and maybe we can come up with a game plan for surgery #2.
All in all, I wouldn't wish this on my worst enemy, but at the same time I need people to understand. Ulcerative Colitis and Crohn's is no joke. It can be humiliating, and isolating. It comes with extreme pain that I can not describe, along with other autoimmune issues such as joint pain, chronic fatigue, frequent fevers etc....The meds have horrible side effects and in turn, cause other issues while combatting the disease symptoms. Most people I meet either have never heard of UC or Crohn's, or think it is simply in line with eating some bad mexican one night or getting food poisoning. It affects every single day. Every plan someone makes. I will be missing my sister's baby shower because I will not be able to fly in the next few weeks. I've missed plenty with my daughter Daughter #1. I've been unable to work. I've been hospitalized and driven my husband nuts with my daily aches and pains and exhaustion.
Ok- public service announcement done. Have a great night people. Thanks for listening to me whine and moan the last two posts. More positive days to follow. =) Plus, True Blood starts tomorrow night! Hell yeah!

I feel like I need to stop writing and saying out loud what I want to happen or what I hope happens, because every time I do, the opposite happens! Case in point; my last post. I was talking about how the bag I had on seemed pretty solid and I was hoping to leave it on a few extra days to allow for some extra healing time yada yada.....
Well, don't you know last night the bag freakin erupted. It had been such a nice night. I went to dinner with my dad and Hubs. It took all the energy I had to get ready and go out into the world. I feel so terrible about myself so I have lost the energy to get dolled up. So we went out. I actually had an appetite despite the ridiculous pain I had going on around my stoma. I had some salmon and some mashed potatoes but didn't over do it by any means. I'm seriously eating like a bird. I get full so fast. The meal was great. Daugther #2 ate salmon, crab, asparagus, avocado and a tiny piece of steak. She doesn't flinch at ANYTHING she tries. It is so wonderful!!!
So we get home. I pop some pain pills and change. I'm minding my own business laying on the recliner, and BAM! I'm wet. Ugh... Of course... because didn't I cancel my appointment with my home nurse telling her the bag survived the shower and it was on solid! Yeah- perfect.
So I run(not run) upstairs to deal with the crap(literally) that has become my life. This was around 830p. The thing about putting a new bag on is that the area has to be clean and dry and the stoma not leaking in order to prep the skin and get a new bag on. Well, my stupidface stoma would not stop. FOR HOURS. It was horrible. My skin hurt. I was on my bathroom floor crying. It was emptying like a Play Doh Fun Factory. I was miserable.  Here's a visual. Everything is a wreck. ----->

What blows my mind is how swollen everything is. I only weigh about 110 pounds. Looking at this gut, no one would think that's possible. Ugh....
Anyway, I've got a rash from the adhesive, I've got raw skin from stomach acid eating it, and I've got the staple wounds that keep getting reopened every time I take a stupid bag off. You can see the 3 staple holes at about 2, 3, and 4 o'clock to the stoma that are not filling in and healing. The rest are closed and fine but those three are not pretty. =(  The horizontal indentation is from who knows what because it wasn't there before surgery. I'm hoping my insides settle down and that fills in because it is just weird looking.
Finally at almost 11p the thing stopped. I showered, and used my blowdryer to dry the area because towels aren't an option. I used a variety of products to prep the skin and got a new bag on.
I have to keep trying to think ahead to August and the takedown surgery. If I focus too much on this I won't make it. Last night was just an out of control ending to the last few days. Exactly what I was trying to avoid happened.
I can't describe the frustration and stress I feel. At the same time, in the corner of my mind, I see myself in a year and know I'll be ok. This is temporary. I'm moving forward. I know that but for some reason that knowledge doesn't take away from the overwhelming feelings that have been cropping up.
I have my summer class starting the second week of July, so I am looking forward to that. It's a professor I had in the spring who I told about my surgery so I know I won't have any issues if they arise. The class will make things fly by to get me to August. I see my surgeon again the 19th and maybe we can come up with a game plan for surgery #2.
All in all, I wouldn't wish this on my worst enemy, but at the same time I need people to understand. Ulcerative Colitis and Crohn's is no joke. It can be humiliating, and isolating. It comes with extreme pain that I can not describe, along with other autoimmune issues such as joint pain, chronic fatigue, frequent fevers etc....The meds have horrible side effects and in turn, cause other issues while combatting the disease symptoms. Most people I meet either have never heard of UC or Crohn's, or think it is simply in line with eating some bad mexican one night or getting food poisoning. It affects every single day. Every plan someone makes. I will be missing my sister's baby shower because I will not be able to fly in the next few weeks. I've missed plenty with my daughter Daughter #1. I've been unable to work. I've been hospitalized and driven my husband nuts with my daily aches and pains and exhaustion.
Ok- public service announcement done. Have a great night people. Thanks for listening to me whine and moan the last two posts. More positive days to follow. =) Plus, True Blood starts tomorrow night! Hell yeah!

Boo Hoo- poor me.

The last few days have sucked. My humor and positive attitude have disappeared. I'm crabby. I last posted on Monday and was still ok. Tuesday I went and got my staples out at my surgeons. What a nightmare. He pulled the bag's adhesive off and exposed all the staples. Three of them looked absolutely horrible and two had pus coming out of them. My actual incision was great... the holes made by the staples turned into the problem. Wonderful. The skin around my stoma got worse and was so raw it was bleeding. Touching a wet towel to it brought tears. So as of Tuesday, we had possible infected staple sites, and a growing problem with the skin irritation around the stoma. How does the skin get irritated around the stoma, you may ask? Well, your colon absorbs the stomach acid from your waste. I bet your didn't know that! Well, My 'waste' is exiting from the small intestines, which if you know anything about anatomy, comes after the stomach and before the colon(if I had one). So the 'waste' is extremely acidic and it doesn't know the difference between a steak and my skin. If my bag isn't fitting properly and the wax ring that binds to the skin has been opened too much, then the 'waste' will spill on to the skin as it leaves the stoma and literally it will start getting broken down by the stomach acid in the 'waste'. Sounds like a ball of fun doesn't it. Yeah- it stings like the worst sunburn you ever got on spring break and the next day when that drunk guy slapped you on it. Yeah- except it stings CONSTANTLY. So I'm crabby. Boo.
Oh- but I'm not done sobbing about Tuesday. So, the bag came off so he could examine me. Said I need antibiotics in case it's an infection (he'd have to open me up to be 100%. No thanks!). Staples out. I had 30 staples in my abdomen. My FrankenBelly now looks like I have railroad tracks coming out of my underwear on a course set for my belly button. Hot stuff. I know.
So, after all that was done, I put a new bag on(without a mirror) and headed home.
I'm sick of not eating. I'm sick of being lightheaded. I'm sick of sleeping uncomfortably. I'm sick of swallowing horse pills. I get full from a piece of bread with peanut butter(protein promotes healing). Waaaahhhh- I know- suck it up, Lisa. It could be worse. Well, everything is relative.
I was happily awaiting Wednesday because my home nurse was coming with a stoma nurse so I was happy to have that wealth of knowledge heading my way.
Both nurses came, and I got yet a new bag. The one I put on at the surgeons started leaking about an hour before they were due to come. Good times.
 So in 24 hours my sore, swollen, staple wounded belly was getting tore at for the 2nd time. Holy crap...I was in tears. I now had new, open wounds from the staple sites. I have a feeling I will be kissing bikini wearing goodbye.
The nurses put a new type of bag on my to see if it would work a bit better. We got it on, everything seemed jolly good, and they left. About an hour later it started leaking. The one nurse came back around 630 to put a new one on. Yep, we peeled the third bag off, (let's keep in mind the adhesive on these bags are made to stick for 5 days), causing more waterworks and attempted to seal the wounds with Benzoin before putting the adhesive barrier on my skin. After getting the skin treated, we used my blowdryer to really mold the wax on the bag and get it molded tight against my skin.

This whole process is so hit and miss because the stoma size changes after surgery, your abdomen changes after surgery as inflammation lessens and everything settles. Needless to say, it's really frustrating.  Once the bag leaks under the adhesive, it's done. So, if you don't get a good seal you have the potential to run through the bags pretty quickly.
Luckily, we got the bag on good and tight. I still have it on and no issues two days later. My stoma has shrunk down to an inch so now I know not to even touch the wax ring. I'm hoping I can leave this bag on a few more days to give the wounds a few more healing days. I'm afraid to get it wet in the shower that it will somehow loosen up and cause more issues. Ugh.
Tuesday and Wednesday were painful and stressful days. Still better than being in pain all day, everyday, but painful just the same. I literally slept all day Thursday with a low grade fever.
I woke up around 10am and went back to bed until I think 4pm. Then went back to sleep until 8pm. It felt like I was drugged but yesterday was the first day I hadn't taken a pain killer in over 3 weeks so I don't know what my deal was. I had a heavy head, felt foggy. I couldn't even focus. I was miserable.
My nurse comes again today and I'm hoping this bag will stay on. I can't bear the thought of the pain of changing it right now. It's just been a crappy few days. The house is a mess, I can't lift or drive for weeks. Dillan is complaining already that she's not being entertained enough one week out of school. Everyone keeps asking me what we should do for dinner when I can barely eat. I need a haircut/color, and eyebrow wax. I have a million errands to run but can't. I get light headed and almost black out a million times a day. I'm done.
Ugh- sorry to be a downer. My head's not in a good place right now. I feel like this crap is never going to end. I'm never going to be 'normal' and never going to just be able to go live my life. I'm sick of seeing other people travel and do all the things I want and planned to do, but I can't. Hell, I didn't even plan the wedding I wanted because I couldn't take the chance and end up back in the hospital and lose money and cancel etc...
UC has been running my life for 3+ years and I'm tired of it.... I just want to live my life. Is it August yet?

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The last few days have sucked. My humor and positive attitude have disappeared. I'm crabby. I last posted on Monday and was still ok. Tuesday I went and got my staples out at my surgeons. What a nightmare. He pulled the bag's adhesive off and exposed all the staples. Three of them looked absolutely horrible and two had pus coming out of them. My actual incision was great... the holes made by the staples turned into the problem. Wonderful. The skin around my stoma got worse and was so raw it was bleeding. Touching a wet towel to it brought tears. So as of Tuesday, we had possible infected staple sites, and a growing problem with the skin irritation around the stoma. How does the skin get irritated around the stoma, you may ask? Well, your colon absorbs the stomach acid from your waste. I bet your didn't know that! Well, My 'waste' is exiting from the small intestines, which if you know anything about anatomy, comes after the stomach and before the colon(if I had one). So the 'waste' is extremely acidic and it doesn't know the difference between a steak and my skin. If my bag isn't fitting properly and the wax ring that binds to the skin has been opened too much, then the 'waste' will spill on to the skin as it leaves the stoma and literally it will start getting broken down by the stomach acid in the 'waste'. Sounds like a ball of fun doesn't it. Yeah- it stings like the worst sunburn you ever got on spring break and the next day when that drunk guy slapped you on it. Yeah- except it stings CONSTANTLY. So I'm crabby. Boo.
Oh- but I'm not done sobbing about Tuesday. So, the bag came off so he could examine me. Said I need antibiotics in case it's an infection (he'd have to open me up to be 100%. No thanks!). Staples out. I had 30 staples in my abdomen. My FrankenBelly now looks like I have railroad tracks coming out of my underwear on a course set for my belly button. Hot stuff. I know.
So, after all that was done, I put a new bag on(without a mirror) and headed home.
I'm sick of not eating. I'm sick of being lightheaded. I'm sick of sleeping uncomfortably. I'm sick of swallowing horse pills. I get full from a piece of bread with peanut butter(protein promotes healing). Waaaahhhh- I know- suck it up, Lisa. It could be worse. Well, everything is relative.
I was happily awaiting Wednesday because my home nurse was coming with a stoma nurse so I was happy to have that wealth of knowledge heading my way.
Both nurses came, and I got yet a new bag. The one I put on at the surgeons started leaking about an hour before they were due to come. Good times.
 So in 24 hours my sore, swollen, staple wounded belly was getting tore at for the 2nd time. Holy crap...I was in tears. I now had new, open wounds from the staple sites. I have a feeling I will be kissing bikini wearing goodbye.
The nurses put a new type of bag on my to see if it would work a bit better. We got it on, everything seemed jolly good, and they left. About an hour later it started leaking. The one nurse came back around 630 to put a new one on. Yep, we peeled the third bag off, (let's keep in mind the adhesive on these bags are made to stick for 5 days), causing more waterworks and attempted to seal the wounds with Benzoin before putting the adhesive barrier on my skin. After getting the skin treated, we used my blowdryer to really mold the wax on the bag and get it molded tight against my skin.

This whole process is so hit and miss because the stoma size changes after surgery, your abdomen changes after surgery as inflammation lessens and everything settles. Needless to say, it's really frustrating.  Once the bag leaks under the adhesive, it's done. So, if you don't get a good seal you have the potential to run through the bags pretty quickly.
Luckily, we got the bag on good and tight. I still have it on and no issues two days later. My stoma has shrunk down to an inch so now I know not to even touch the wax ring. I'm hoping I can leave this bag on a few more days to give the wounds a few more healing days. I'm afraid to get it wet in the shower that it will somehow loosen up and cause more issues. Ugh.
Tuesday and Wednesday were painful and stressful days. Still better than being in pain all day, everyday, but painful just the same. I literally slept all day Thursday with a low grade fever.
I woke up around 10am and went back to bed until I think 4pm. Then went back to sleep until 8pm. It felt like I was drugged but yesterday was the first day I hadn't taken a pain killer in over 3 weeks so I don't know what my deal was. I had a heavy head, felt foggy. I couldn't even focus. I was miserable.
My nurse comes again today and I'm hoping this bag will stay on. I can't bear the thought of the pain of changing it right now. It's just been a crappy few days. The house is a mess, I can't lift or drive for weeks. Dillan is complaining already that she's not being entertained enough one week out of school. Everyone keeps asking me what we should do for dinner when I can barely eat. I need a haircut/color, and eyebrow wax. I have a million errands to run but can't. I get light headed and almost black out a million times a day. I'm done.
Ugh- sorry to be a downer. My head's not in a good place right now. I feel like this crap is never going to end. I'm never going to be 'normal' and never going to just be able to go live my life. I'm sick of seeing other people travel and do all the things I want and planned to do, but I can't. Hell, I didn't even plan the wedding I wanted because I couldn't take the chance and end up back in the hospital and lose money and cancel etc...
UC has been running my life for 3+ years and I'm tired of it.... I just want to live my life. Is it August yet?

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I get by with a little help from my meds....

Looky looky- 2 weeks post OP. Somehow it seems longer than that but at the same time I can't believe it's only been 2 weeks. Maybe because I'm bored from "taking it easy" and laying around popping pain meds. My days are a bit hazy. It's been an interesting few days. For starters, I had a security breach with my bag at around 445am early Sunday morning. OMG was that only yesterday? It feels like 4 days ago. Anyway- woke up just in time to save a huge mess from happening in bed. I'm making myself sick over here. I had a leak under the adhesive on my wafer. I'm pretty sure it's because the seal is compromised from the staples and the scabbing that is occurring. I just can't get the adhesive to stay put 100%. The staples are kind of lifting so it's wreaking havoc on my system that was going so well. Barf.
Anyway, jumped out of bed and in between gagging and crying, peeled the wafer off my belly. I took a staple with it, but oh well. It hurt like a bitch. And the area around my stoma is so raw. The staples are so ugly. So at 5am I decided to do a photo shoot in my bathroom. Here's what I'm working with people. Hide your children's eyes-------->

It's pretty brutal. I haven't counted the staples and for some reason I am obsessed with how many there are. It just looks deformed in general from them digging around in there. Basically, they went in and pulled my small intestines out and shuffled them around looking for signs of Crohns. When there was no sign of Crohns disease, they put it back and proceeded to cut out the large intestines. I have this weird sunken area now. I guess things will eventually settle back but it's just weird. I'm missing 5 feet of my insides. That has to in some way affect the physiology outside, right?! And my poor belly button. I'll be lucky if it survives.  You can see the outline of the adhesive square that attaches to the bag. It covers a pretty big area of the staples and my entire belly button.
There's the red, meaty stoma I was talking about in a previous post. That is actually a bit of my small intestines. For how red it is, that doesn't hurt because there are no nerve endings. What is awful, is the red, raw skin around the stoma and the area that the stoma is stitched to my skin. The black is the sutures that haven't disolved yet. It hurts about as much as you can imagine it does. I'm hoping once the staples are out, things will improve a bit and not look so gruesome.
Me 'taking it easy' is like torture. The littlest outing and I am hurting big time. We picked my dad up from the airport yesterday and stopped at Panera afterwards. They have the best soup. Lemon Chicken Orzo. To die for. Try it if you can!
Anyway- that minor outing and I ended up passing out for about 2 hours. Completely wiped out. The pain has definitely dropped tremendously, but when I do something, walk around for a while, or even put laundry away I am thankful for my friendly little pain killers. Pain creeps up out of no where just when I think I may go the whole day without needing anything. That day is soon, as for the most part I can suck it up. But I have my moments. I would much rather be taking meds to help with healing pain, than taking them just to sleep through the night, or get through my day because my cramping, joint pain and UC pain is so bad. So regardless of pain and whatnot I've got, I'm still better off.
I'll be happy when I can run around and finally feel 'normal' again. It's going to be great. I can't wait to ride my new bike. It's amazing how you miss so many things that are generally taken for granted. =(
Bonus is I have Shady Al to chauffer me around for another 7 days. I'm sure I'm going to drive him nuts.
Today he got to take me to Target and get blood work done. Tomorrow he gets to take me to the surgeon to get the staples out. He's going to be thrilled I'm sure! Wooo Hoooo!!!! What a lucky guy!
Sorry to freak everyone out with the FrankenBelly. The nice thing is you can't see a thing when I'm out and about in the world. ----->

I'm making dinner tonight for the first time since I went 'under the knife'. I'm sure I'll be hurting later, but I need to feel somewhat normal. The worst thing! I can't eat most of what I'm making! Boo!!!! I can't wait to increase the diet.... Five Guys Burgers and Fries are calling me!! Yummy!

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Looky looky- 2 weeks post OP. Somehow it seems longer than that but at the same time I can't believe it's only been 2 weeks. Maybe because I'm bored from "taking it easy" and laying around popping pain meds. My days are a bit hazy. It's been an interesting few days. For starters, I had a security breach with my bag at around 445am early Sunday morning. OMG was that only yesterday? It feels like 4 days ago. Anyway- woke up just in time to save a huge mess from happening in bed. I'm making myself sick over here. I had a leak under the adhesive on my wafer. I'm pretty sure it's because the seal is compromised from the staples and the scabbing that is occurring. I just can't get the adhesive to stay put 100%. The staples are kind of lifting so it's wreaking havoc on my system that was going so well. Barf.
Anyway, jumped out of bed and in between gagging and crying, peeled the wafer off my belly. I took a staple with it, but oh well. It hurt like a bitch. And the area around my stoma is so raw. The staples are so ugly. So at 5am I decided to do a photo shoot in my bathroom. Here's what I'm working with people. Hide your children's eyes-------->

It's pretty brutal. I haven't counted the staples and for some reason I am obsessed with how many there are. It just looks deformed in general from them digging around in there. Basically, they went in and pulled my small intestines out and shuffled them around looking for signs of Crohns. When there was no sign of Crohns disease, they put it back and proceeded to cut out the large intestines. I have this weird sunken area now. I guess things will eventually settle back but it's just weird. I'm missing 5 feet of my insides. That has to in some way affect the physiology outside, right?! And my poor belly button. I'll be lucky if it survives.  You can see the outline of the adhesive square that attaches to the bag. It covers a pretty big area of the staples and my entire belly button.
There's the red, meaty stoma I was talking about in a previous post. That is actually a bit of my small intestines. For how red it is, that doesn't hurt because there are no nerve endings. What is awful, is the red, raw skin around the stoma and the area that the stoma is stitched to my skin. The black is the sutures that haven't disolved yet. It hurts about as much as you can imagine it does. I'm hoping once the staples are out, things will improve a bit and not look so gruesome.
Me 'taking it easy' is like torture. The littlest outing and I am hurting big time. We picked my dad up from the airport yesterday and stopped at Panera afterwards. They have the best soup. Lemon Chicken Orzo. To die for. Try it if you can!
Anyway- that minor outing and I ended up passing out for about 2 hours. Completely wiped out. The pain has definitely dropped tremendously, but when I do something, walk around for a while, or even put laundry away I am thankful for my friendly little pain killers. Pain creeps up out of no where just when I think I may go the whole day without needing anything. That day is soon, as for the most part I can suck it up. But I have my moments. I would much rather be taking meds to help with healing pain, than taking them just to sleep through the night, or get through my day because my cramping, joint pain and UC pain is so bad. So regardless of pain and whatnot I've got, I'm still better off.
I'll be happy when I can run around and finally feel 'normal' again. It's going to be great. I can't wait to ride my new bike. It's amazing how you miss so many things that are generally taken for granted. =(
Bonus is I have Shady Al to chauffer me around for another 7 days. I'm sure I'm going to drive him nuts.
Today he got to take me to Target and get blood work done. Tomorrow he gets to take me to the surgeon to get the staples out. He's going to be thrilled I'm sure! Wooo Hoooo!!!! What a lucky guy!
Sorry to freak everyone out with the FrankenBelly. The nice thing is you can't see a thing when I'm out and about in the world. ----->

I'm making dinner tonight for the first time since I went 'under the knife'. I'm sure I'll be hurting later, but I need to feel somewhat normal. The worst thing! I can't eat most of what I'm making! Boo!!!! I can't wait to increase the diet.... Five Guys Burgers and Fries are calling me!! Yummy!

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