It's been a long time coming...

Hello out there. I haven't written since January. Too long. I have thought about it so many times but what I wanted to say was not enough or felt too repetitive, to bother. So here I am. Stuff has happened that I could have written about but this post is 100% influenced by a friend's message I got last week on Facebook. Someone I have not seen in years. And by years I mean 20 which is odd bc I'm TOTALLY only 29 still. ;-) Anyway...

I could attempt to outline the shittiness(according to auto correct- NOT a word) that is IBD but I'm exhausted trying to recall the nonsense from almost an entire year. Let's just say, and so it goes. Pain, meds, pain management, more meds, feeling like shit, fatigue, pain, fatigue...rinse, repeat. The latest was a failed attempt at an epidural with my pain management doctor to try and "break the pain cycle" to give some relief. Not 100% but at least not have it constant. Not for nothing with this failed procedure, it was absolutely blissful to have zero abdominal pain for about four-ish days. Blissful and miserable because, as most people who are chronically ill will tell you, you get to a point where you forget the before. The old you. The normal. So you begin to have a "new" normal life. And it generally is not an upgrade. Well, this four day relief was a bit bittersweet. Getting that time of relief and suddenly remembering how I felt to be a person not in pain pissed me off a bit.
The chance I took for it to work was unknown. Everyone is different and abdominal pain is difficult to treat.
Part of me wishes I hadn't had those four days because now it's fresh. The pain free me isn't this different life fading into the past. It was last fucking month and now it's almost tangible. It is bullshit. But... it didn't work. So now I'm back to where I was before with fresh knowledge of, "Oh yeah I used to not be miserable.". I had basically gotten to the point where the comparison didn't exist because I couldn't remember. And now I can and I'm pissed about it. But it was the chance I took for it to actually work to feel that way pretty regularly. Ignorance can be bliss. That is no lie.

One amazing thing about IBD is this amazing sisterhood that has come about almost entirely online. People you tell anything to, who get you 100% and who you've never met. But they need no explanations. They just know. Some you meet and you know how much the relationship impacts all areas of life. In September I was lucky enough to be the officiant at the wedding of one of my Gutsy Girls. Her husband is amazing and she is someone I know I will always have a connection with. This is me w my hot mic for the ceremony. In true Lisa fashion, at the end, I totally forgot I was miked and started bullshitting with the Bride's sister. No one seemed to notice. Poor Trump. Heehee.

But I digress... I started this discussing a message. This friend had a friend with Crohns, my age, who didn't care for herself and had passed away. I hate reading that because while IBD is not trivial, and can be a bitch, for the most part you will not die if you do it right. Life can suck but you'll be alive. Living is a matter of opinion.
I went months not doing it right in 2009-10 and my first ER visit my Hemoglobin was a 5(they usually transfuse at a 7) and I needed 4 units. Almost half. Yes people, it takes me almost bleeding to death to go to the ER. Stupid or tough-not sure. Anyway it was too close to home. I had responded and in it mentioned how many people think it's trivial which is why I blog and post and am generally annoying about my struggles.

This was her reply: You're never annoying when you bring awareness to such a serious disease. In fact, I credit you with saving my mom's life. I read one of your blog posts a few years ago, when my mom was chronically ill. I sent it to her, which prompted her to question her doctor. She had diverticulitis, and was bleeding internally! Soooo, no, it's never annoying.
Thank you from the bottom of my heart.

Yes people, I bawled. How can you not. It was just this moment of, wow. So maybe I annoy 200 people with my "whining" or doctor check ins, or hospital pictures, but hell yes if what I have to say and what I go through can do this ONE thing??!!! Than I am fine. I'm more than fine. I do have a reason and a voice that can be impactful. Even if it's to a person I've never met who is the mom of a friend I haven't seen since we were drunk in Canada in 1999. 

That message was on October 11th. I haven't stopped thinking about it and what I wanted to say. 

So this is all of it. I feel like I need to come back to this because not only was it therapuetic for me, but apparently more helpful than I thought. People still find their way to my old posts but I hate that it basically stopped. Because it is still a journey. Still a lesson. Still a struggle. Still a life hiding more than I show to everyone. 

Love your guts, everyone. Love your health and the fact that you can! Because nothing matters when your health deteriorates. Nothing. In a month it changes. Day to day. Enjoy it. 

Thanks for reading. XOXO

Hello out there. I haven't written since January. Too long. I have thought about it so many times but what I wanted to say was not enough or felt too repetitive, to bother. So here I am. Stuff has happened that I could have written about but this post is 100% influenced by a friend's message I got last week on Facebook. Someone I have not seen in years. And by years I mean 20 which is odd bc I'm TOTALLY only 29 still. ;-) Anyway...

I could attempt to outline the shittiness(according to auto correct- NOT a word) that is IBD but I'm exhausted trying to recall the nonsense from almost an entire year. Let's just say, and so it goes. Pain, meds, pain management, more meds, feeling like shit, fatigue, pain, fatigue...rinse, repeat. The latest was a failed attempt at an epidural with my pain management doctor to try and "break the pain cycle" to give some relief. Not 100% but at least not have it constant. Not for nothing with this failed procedure, it was absolutely blissful to have zero abdominal pain for about four-ish days. Blissful and miserable because, as most people who are chronically ill will tell you, you get to a point where you forget the before. The old you. The normal. So you begin to have a "new" normal life. And it generally is not an upgrade. Well, this four day relief was a bit bittersweet. Getting that time of relief and suddenly remembering how I felt to be a person not in pain pissed me off a bit.
The chance I took for it to work was unknown. Everyone is different and abdominal pain is difficult to treat.
Part of me wishes I hadn't had those four days because now it's fresh. The pain free me isn't this different life fading into the past. It was last fucking month and now it's almost tangible. It is bullshit. But... it didn't work. So now I'm back to where I was before with fresh knowledge of, "Oh yeah I used to not be miserable.". I had basically gotten to the point where the comparison didn't exist because I couldn't remember. And now I can and I'm pissed about it. But it was the chance I took for it to actually work to feel that way pretty regularly. Ignorance can be bliss. That is no lie.

One amazing thing about IBD is this amazing sisterhood that has come about almost entirely online. People you tell anything to, who get you 100% and who you've never met. But they need no explanations. They just know. Some you meet and you know how much the relationship impacts all areas of life. In September I was lucky enough to be the officiant at the wedding of one of my Gutsy Girls. Her husband is amazing and she is someone I know I will always have a connection with. This is me w my hot mic for the ceremony. In true Lisa fashion, at the end, I totally forgot I was miked and started bullshitting with the Bride's sister. No one seemed to notice. Poor Trump. Heehee.

But I digress... I started this discussing a message. This friend had a friend with Crohns, my age, who didn't care for herself and had passed away. I hate reading that because while IBD is not trivial, and can be a bitch, for the most part you will not die if you do it right. Life can suck but you'll be alive. Living is a matter of opinion.
I went months not doing it right in 2009-10 and my first ER visit my Hemoglobin was a 5(they usually transfuse at a 7) and I needed 4 units. Almost half. Yes people, it takes me almost bleeding to death to go to the ER. Stupid or tough-not sure. Anyway it was too close to home. I had responded and in it mentioned how many people think it's trivial which is why I blog and post and am generally annoying about my struggles.

This was her reply: You're never annoying when you bring awareness to such a serious disease. In fact, I credit you with saving my mom's life. I read one of your blog posts a few years ago, when my mom was chronically ill. I sent it to her, which prompted her to question her doctor. She had diverticulitis, and was bleeding internally! Soooo, no, it's never annoying.
Thank you from the bottom of my heart.

Yes people, I bawled. How can you not. It was just this moment of, wow. So maybe I annoy 200 people with my "whining" or doctor check ins, or hospital pictures, but hell yes if what I have to say and what I go through can do this ONE thing??!!! Than I am fine. I'm more than fine. I do have a reason and a voice that can be impactful. Even if it's to a person I've never met who is the mom of a friend I haven't seen since we were drunk in Canada in 1999. 

That message was on October 11th. I haven't stopped thinking about it and what I wanted to say. 

So this is all of it. I feel like I need to come back to this because not only was it therapuetic for me, but apparently more helpful than I thought. People still find their way to my old posts but I hate that it basically stopped. Because it is still a journey. Still a lesson. Still a struggle. Still a life hiding more than I show to everyone. 

Love your guts, everyone. Love your health and the fact that you can! Because nothing matters when your health deteriorates. Nothing. In a month it changes. Day to day. Enjoy it. 

Thanks for reading. XOXO

Long time running...and I'm shot.

More I never updated this after my most recent surgery in October. My recovery was slow going. Getting opened up again and again takes its toll and I'm that much older, weaker and fatigued since it all began. 

I was in the hospital for a week. Pretty standard. Was on oxygen for a while because when they dig around in your abdomen it hurts to expand to full breathing. So you are suddenly a case for respiratory therapy and their visits. Oh and my white blood cell count dropped so everyone went crazy with masks and what not. It didn't help I was recovering on the oncology floor where something like that is very serious. My surgeon walked in and doubted it was an issue and he was right. The mask is a good look though. 

 

I had clumps of guts scarred together. A nice one that made a 4 months pregnant bulge when looking on my left is now gone! So bonus. Guts adhered to organs. Adhered to my abdominal wall. No wonder anything past liquids hurt to ingest. My guts couldn't move. They couldn't move the food. I'm lucky I didn't get an obstruction. Other than the adhesion removal that was planned and pretty much a mess, apparently I had some surprises in there. Who knew. What's left!? I had an ovarian cyst that was pretty substantial but hard to distinguish that pain when your entire abdominal cavity is in pain. I wouldn't have known if it burst. Keep in mind, those little egg makers are all that's left. They better keep it together. Well, then they realized, "oh, she has multiple small bowel tears" or what was coded as "perforated ulcers". So those needed to be closed. Which put a wedge in the whole, "Let's load you up with Seprafilm which will block scarring and more adhesions from forming". So yeah. And I'm proud to announce I'm pretty sure I have scar pain coming back. Pain in new places. So having mixed feelings about basically everything. Coming to terms with "constant" and "perpetual" issues, pain, treatment is not a fun concept. At all. Open abdominal surgery many times is horrible to recover from. 

Here is me I think 2 days post Op. Still in the hospital. Nice stapling through the belly button that was going to be questionable. 

FrankenBelly in full effect. My surgeon does a great job of cutting in the same spot. Like no kidding his cut is amazing. I still wish I had video of my guts out. So many opportunities. Told no every time. I wondered how this would all turn out. The last one healed well. This is today. 

It's not as flat as in the past but what can you expect when the same spot gets reopened again and again. And yes it's at an angle. And my belly button is there but  below the indentation at the very top of incision. It's very small. Amazed it survived. 

So now almost 3 months post Op I don't know anymore. Every time is supposed to be the big fix. I know this is how it goes with IBD and I've been dealing w it long enough to not be naive. But you come to a point where the fatigue is depressing. Being dehydrated limits you. The pain is just, well believe it or not, I'm so used to it that it's not even the biggest hinderance. I'll see my surgeon in a few days. Tell him about the new pain and he'll be ready to lose it. I'm his PITA patients bc my original surgery(colectomy and jpouch creation), was textbook. Apparently my pouch is gorgeous. As gorgeous as guts go. 

Most everything now is mental or emotional. IBD is like abuse you can never escape. This shadow of unknown and surprise. Can I grocery shop today? Can I drive or am I shot? It's like a crap shoot. Feeling like you have no control over what you can accomplish and plan has the most devastating impact. I'm hoping maybe this pain is recovery. My abdominal wall is clearly very weak. So maybe that's it. 

I have to remember I can't fall off the floor. And I'm better off than I have been for many years. But in the big picture isn't saying much. 

Many thanks for reading. Don't take your energy, health and capabilities for granted. XO

More I never updated this after my most recent surgery in October. My recovery was slow going. Getting opened up again and again takes its toll and I'm that much older, weaker and fatigued since it all began. 

I was in the hospital for a week. Pretty standard. Was on oxygen for a while because when they dig around in your abdomen it hurts to expand to full breathing. So you are suddenly a case for respiratory therapy and their visits. Oh and my white blood cell count dropped so everyone went crazy with masks and what not. It didn't help I was recovering on the oncology floor where something like that is very serious. My surgeon walked in and doubted it was an issue and he was right. The mask is a good look though. 

 

I had clumps of guts scarred together. A nice one that made a 4 months pregnant bulge when looking on my left is now gone! So bonus. Guts adhered to organs. Adhered to my abdominal wall. No wonder anything past liquids hurt to ingest. My guts couldn't move. They couldn't move the food. I'm lucky I didn't get an obstruction. Other than the adhesion removal that was planned and pretty much a mess, apparently I had some surprises in there. Who knew. What's left!? I had an ovarian cyst that was pretty substantial but hard to distinguish that pain when your entire abdominal cavity is in pain. I wouldn't have known if it burst. Keep in mind, those little egg makers are all that's left. They better keep it together. Well, then they realized, "oh, she has multiple small bowel tears" or what was coded as "perforated ulcers". So those needed to be closed. Which put a wedge in the whole, "Let's load you up with Seprafilm which will block scarring and more adhesions from forming". So yeah. And I'm proud to announce I'm pretty sure I have scar pain coming back. Pain in new places. So having mixed feelings about basically everything. Coming to terms with "constant" and "perpetual" issues, pain, treatment is not a fun concept. At all. Open abdominal surgery many times is horrible to recover from. 

Here is me I think 2 days post Op. Still in the hospital. Nice stapling through the belly button that was going to be questionable. 

FrankenBelly in full effect. My surgeon does a great job of cutting in the same spot. Like no kidding his cut is amazing. I still wish I had video of my guts out. So many opportunities. Told no every time. I wondered how this would all turn out. The last one healed well. This is today. 

It's not as flat as in the past but what can you expect when the same spot gets reopened again and again. And yes it's at an angle. And my belly button is there but  below the indentation at the very top of incision. It's very small. Amazed it survived. 

So now almost 3 months post Op I don't know anymore. Every time is supposed to be the big fix. I know this is how it goes with IBD and I've been dealing w it long enough to not be naive. But you come to a point where the fatigue is depressing. Being dehydrated limits you. The pain is just, well believe it or not, I'm so used to it that it's not even the biggest hinderance. I'll see my surgeon in a few days. Tell him about the new pain and he'll be ready to lose it. I'm his PITA patients bc my original surgery(colectomy and jpouch creation), was textbook. Apparently my pouch is gorgeous. As gorgeous as guts go. 

Most everything now is mental or emotional. IBD is like abuse you can never escape. This shadow of unknown and surprise. Can I grocery shop today? Can I drive or am I shot? It's like a crap shoot. Feeling like you have no control over what you can accomplish and plan has the most devastating impact. I'm hoping maybe this pain is recovery. My abdominal wall is clearly very weak. So maybe that's it. 

I have to remember I can't fall off the floor. And I'm better off than I have been for many years. But in the big picture isn't saying much. 

Many thanks for reading. Don't take your energy, health and capabilities for granted. XO