Well hello out there internet land. it's been a bit since I've written so that could mean I feel fantastic or like total shit... it's been a little bit of both. I still wake up feeling absolutely liberated not having a rotting colon, and not having a bag 'o poo adhered to my torso. On the flip side, still dealing with pain that comes with rearranging my internal organs. First, a little factoid. The average person, from the moment of ingestion to elimination is anywhere from 18-48 hours depending on water and fiber intake. Your food leaves your stomach within 30 minutes and heads to the small bowel. The small bowel is not storage. In roughly 3-4 hours it sucks up the nutrients from the food and moves it into your colon. The colon absorbs water and electrolytes and anything left worth using and stores it until you have to go #2. Well, I don't have the colon anymore. So...after about 4-6 hours my food is gone. Sometimes that is very annoying. It can cause a bit more frequency than I'd like, but anything beats going 20-30 times a day, in pain, like I was before surgery. This leads to another factoid that I may have mentioned in the past. Your small bowel can not remove stomach acid from your waste. It never will. That's part of your colon's job, which I no longer have. To sum up- frequency + highly acidic poo = pain, misery and adult diaper rash. =( Still, I wouldn't go back. Life sucked pretty bad when I prefer a diaper rash. CRAZY.
I've started keeping a journal of when and what I eat, and subsequently, when I hit the throne. Wow- just reread that last part. I have seriously opened the flood gates into what should be the most hidden moments and details of what I'm dealing with and here I am sending it into the internet.
Here's me and my baby girl a few days ago when she turned 15 months. Happy I can spend time, run around and feeling so much better!!! =)
Here's a pretty recent pic of the FrankenBelly. Not as bad as I ever would have thought, but a lot of scar tissue that tends to give me pain if I move a certain way, or quickly. Yoga will not be possible for a bit. Just stretching in the morning hurts. Hoping it will slowly subside.
I've been using some scar fading stuff but not religiously. I'm obviously not too concerned. If it starts to fade as the vertical one did it won't be a big deal. It is very recessed though. Sunken in and weird. Everyone says it's look like a gunshot scar. I think my story is WAY better than a getting shot or knifed. I'll stick with the story about how I kicked UC's ass to the curb!! BOOM!
Had Halloween yesterday. It was so LOVELY to just stroll around the neighborhood, no urgency, with Dillan. The temps dropping brought us in, NOT MY GUTS!!!! That's a big deal. EVERY SINGLE moment, event, and day was impacted by my UC. Seriously it is as though the binds are gone. I was walking last night and pushing Violet thinking about how a year ago life was so different. I was ballooned from Prednisone. I hurt all over. My stepson B took Daughter #1 around because I wouldn't have lasted a block. This year I could have gone for hours. It was great. So liberating. A bonus---We have WAY too much candy left. It's going to be a food group for a while. My kids are damn cute!
I did full blown makeup to be a bearded lady... here's a before and an after----->
It was hard smiling in that thing. It was either Bearded lady or a Pig in a Blanket and it ended up being too warm to walk around wrapped in a blanket. I'm still not used to warm weather at Halloween. I subconsciously think I need the thermals under my costume!!
Here's me last year. I didn't even want my picture taken because the moon face was so bad and I was so ugly. I don't even recognize myself. How horrible that drug is. I think I packed on almost 40lbs too. I should have just put a bag over my fat head!!! =) And can you tell green is my favorite color. That's weird.
I have been thinking lately I want to do more in striving for IBD, ostomy and Pouch awareness. I don't know where to start. I think I'll contact my local CCFA. I really want to be out there as an advocate with my story and experience and make what we deal with and how it affects our lives a bit more center stage. It struck me the other day when I called my SSDI(Social Security Disability Insurance) attorney to update my file with my second surgery and how my meds changed and the woman at the office who I passed the message to said, "I'd ask what an Ostomy reversal is, but first I need to know what an ostomy is." It just took me aback. Is this stuff really that below the radar?? It shouldn't be. We are not that few and far between!!! Hello!!!! We all need to talk and get it out there. I'm sure at some point people were embarrassed to talk about breast cancer but now, there isn't one person who hasn't heard of breast cancer. And yet, they still spend millions every year on 'awareness'. Everyone is aware... in terms of that..it's time to just shift that money to research and treatment.
With IBD, there is little 'awareness'. Little understanding. Meds that rock our worlds and our bodies into worse situations. Other countries are leaping ahead with research and trials with intestinal transplants, fecal transplant etc... I would have been all on board for someone else's guts. Even one foot of colon would have to help right?? Ok, I'm off my soapbox and done contemplating biology and science I have to business contemplating. Have a great November 1st!!! I can not believe this year is winding down. One year ago I was dealing with a horrible flare of which I vowed to stay out of the Big H, extreme joint pain, Remicade infusions that weren't even working, 40mg of Prednisone(down from 70mg), a colonoscopy and CT scan and a cervical cancer scare and surgery to remove aggressive and quickly advancing precancerous cells. Last October and November were ROUGH!!! It just goes to show how much can change in a year. When you think you've hit the bottom, when the world is crumbling, if you just hang on and keep it together, you will look back a year later and amaze yourself at what you can overcome. We are all stronger than we think. We just have to give ourselves the chance to shine! Be well everyone. Thanks for reading. XOXO
Well hello out there internet land. it's been a bit since I've written so that could mean I feel fantastic or like total shit... it's been a little bit of both. I still wake up feeling absolutely liberated not having a rotting colon, and not having a bag 'o poo adhered to my torso. On the flip side, still dealing with pain that comes with rearranging my internal organs. First, a little factoid. The average person, from the moment of ingestion to elimination is anywhere from 18-48 hours depending on water and fiber intake. Your food leaves your stomach within 30 minutes and heads to the small bowel. The small bowel is not storage. In roughly 3-4 hours it sucks up the nutrients from the food and moves it into your colon. The colon absorbs water and electrolytes and anything left worth using and stores it until you have to go #2. Well, I don't have the colon anymore. So...after about 4-6 hours my food is gone. Sometimes that is very annoying. It can cause a bit more frequency than I'd like, but anything beats going 20-30 times a day, in pain, like I was before surgery. This leads to another factoid that I may have mentioned in the past. Your small bowel can not remove stomach acid from your waste. It never will. That's part of your colon's job, which I no longer have. To sum up- frequency + highly acidic poo = pain, misery and adult diaper rash. =( Still, I wouldn't go back. Life sucked pretty bad when I prefer a diaper rash. CRAZY.
I've started keeping a journal of when and what I eat, and subsequently, when I hit the throne. Wow- just reread that last part. I have seriously opened the flood gates into what should be the most hidden moments and details of what I'm dealing with and here I am sending it into the internet.
Here's me and my baby girl a few days ago when she turned 15 months. Happy I can spend time, run around and feeling so much better!!! =)
Here's a pretty recent pic of the FrankenBelly. Not as bad as I ever would have thought, but a lot of scar tissue that tends to give me pain if I move a certain way, or quickly. Yoga will not be possible for a bit. Just stretching in the morning hurts. Hoping it will slowly subside.
I've been using some scar fading stuff but not religiously. I'm obviously not too concerned. If it starts to fade as the vertical one did it won't be a big deal. It is very recessed though. Sunken in and weird. Everyone says it's look like a gunshot scar. I think my story is WAY better than a getting shot or knifed. I'll stick with the story about how I kicked UC's ass to the curb!! BOOM!
Had Halloween yesterday. It was so LOVELY to just stroll around the neighborhood, no urgency, with Dillan. The temps dropping brought us in, NOT MY GUTS!!!! That's a big deal. EVERY SINGLE moment, event, and day was impacted by my UC. Seriously it is as though the binds are gone. I was walking last night and pushing Violet thinking about how a year ago life was so different. I was ballooned from Prednisone. I hurt all over. My stepson B took Daughter #1 around because I wouldn't have lasted a block. This year I could have gone for hours. It was great. So liberating. A bonus---We have WAY too much candy left. It's going to be a food group for a while. My kids are damn cute!
I did full blown makeup to be a bearded lady... here's a before and an after----->
It was hard smiling in that thing. It was either Bearded lady or a Pig in a Blanket and it ended up being too warm to walk around wrapped in a blanket. I'm still not used to warm weather at Halloween. I subconsciously think I need the thermals under my costume!!
Here's me last year. I didn't even want my picture taken because the moon face was so bad and I was so ugly. I don't even recognize myself. How horrible that drug is. I think I packed on almost 40lbs too. I should have just put a bag over my fat head!!! =) And can you tell green is my favorite color. That's weird.
I have been thinking lately I want to do more in striving for IBD, ostomy and Pouch awareness. I don't know where to start. I think I'll contact my local CCFA. I really want to be out there as an advocate with my story and experience and make what we deal with and how it affects our lives a bit more center stage. It struck me the other day when I called my SSDI(Social Security Disability Insurance) attorney to update my file with my second surgery and how my meds changed and the woman at the office who I passed the message to said, "I'd ask what an Ostomy reversal is, but first I need to know what an ostomy is." It just took me aback. Is this stuff really that below the radar?? It shouldn't be. We are not that few and far between!!! Hello!!!! We all need to talk and get it out there. I'm sure at some point people were embarrassed to talk about breast cancer but now, there isn't one person who hasn't heard of breast cancer. And yet, they still spend millions every year on 'awareness'. Everyone is aware... in terms of that..it's time to just shift that money to research and treatment.
With IBD, there is little 'awareness'. Little understanding. Meds that rock our worlds and our bodies into worse situations. Other countries are leaping ahead with research and trials with intestinal transplants, fecal transplant etc... I would have been all on board for someone else's guts. Even one foot of colon would have to help right?? Ok, I'm off my soapbox and done contemplating biology and science I have to business contemplating. Have a great November 1st!!! I can not believe this year is winding down. One year ago I was dealing with a horrible flare of which I vowed to stay out of the Big H, extreme joint pain, Remicade infusions that weren't even working, 40mg of Prednisone(down from 70mg), a colonoscopy and CT scan and a cervical cancer scare and surgery to remove aggressive and quickly advancing precancerous cells. Last October and November were ROUGH!!! It just goes to show how much can change in a year. When you think you've hit the bottom, when the world is crumbling, if you just hang on and keep it together, you will look back a year later and amaze yourself at what you can overcome. We are all stronger than we think. We just have to give ourselves the chance to shine! Be well everyone. Thanks for reading. XOXO
Thanks for sharing:))
ReplyDeleteSounds like we were VERY much in the same place this time last year :( And look at us now!
ReplyDeleteHi!!
ReplyDeleteI found your blog on girls with guts. On December 5th I start the colon removal process! That's my day for surgery. I'm glad I could read everything you went through so I know what to expect. It definitely looks like a long journey! I'm glad you are doing so well! Do you have any tips for me? I can use all the help I can get.
How did surgery go Kelly?? Sorry I just saw this today!! Hope you are adjusting a few weeks post OP. Email me anytime. lisapolley19@gmail.com
DeleteHi Lisa, I'm dropping by again. Here's another little tip you may or may not have heard of.....for the rash etc try Critic Aide creme. It's truly a lifesaver (or butt saver) LOL :)
ReplyDelete