I am writing from my home for the last 48 hours, a hospital bed. I began feeling that familiar pain on Wednesday night, knowing a Crohn's "flare" was beginning, even though I was trying to wish it away. I had been foolish, and I knew it. Tuesday night, I had several no-nos at dinner, but felt fine all day Wednesday. So naturally I pushed my "luck" Wednesday evening and had a major no-no- stir fry with fresh veggies.
I call these episodes "flares", which can be misleading, or confusing. For some with Crohn's disease, a flare is more of a chronic or longer term episode, where they feel miserable for weeks, and it takes even more weeks (or months) to get it all under control. For me, it really means an obstruction. There are, of course, many causes and types of obstructions, which most people who aren't familiar with Crohn's assume means a surgical, life threatening bowel obstruction. For many of us, however, it means for a variety of reasons the bowel has closed up and food can not pass. Instead of explaining all of that, I usually say "flare" and they say "Oh.", enough said.
I have had a few obstructions over the last few months, and each has been worse than the last. More painful, with vomiting (which I had been lucky to escape in the past) and more of an allover "I. am. dying." feeling. So the last time I had one and my husband couldn't open the bathroom door to check on me bacause I was passed out on it, we both agreed that next time, I was going to the hospital for pain relief. As you probably know, we are not insured, and before that we were inadequately insured, so I have been sort of suffering through these episodes with whatever medications I had on hand, and patiently knowing it would "pass" eventually. But the last few, I admit they have scared me a bit. So when the pain reached a certain level around 3am on Thursday morning, I woke Pat up and said "let's go."
I got here and was taken care of quickly, one of the benefits of coming in the middle of the night I suppose. I was given Dilaudud (I am a huge fan!) and Zofran, as nausea had set in by then. I got immediate relief from those medications. The doctor ordered a CT scan, and that's when the fear started setting in. All I saw were dollar signs floating above my head. Was I really that naive? Did I really think I would just get pain management and be on my way? I guess I didn't really care when I was actually IN pain, but when I was getting some relief I started to think a little more clearly, and all I thought was "I should have stayed home."
So then came the dreaded words no one wants to hear- "Mrs. Ryan, you have an obstruction and I am going to admit you to the hospital." After some strong lecturing on how a bowel obstruction can cause life threatening perforations of the bowel and ruling out infection could save my life, I agreed it was the best plan. Still seeing those dollar signs. $$$$$$
So I have learned a few things along the way these last two days. First, I have wondered how I could have an obstruction since I have no strictures. A stricture is a narrowing of the bowel, caused either by inflammation or scar tissue. I had an exam to determine that just last summer, and it was clear that I had no narrowing of the bowel anywhere. I was informed that with Crohn's, the inflammation can and does just "suddenly" occur. Actually, this is information I already knew, I probably just disregarded it as I have been relatively symptom free for so long, I didn't feel it was relevant. And at my age, I have to purge old information to make room for new information. My obstruction this time was caused by both scar tissue and that really good stir fry. Scar tissue will continue to build and build upon itself sometimes, which narrowed the section of my bowel that was previously resected. A little inflammation there (it only takes about a millimeter all the way around to close it off) along with crisp cooked carrots, onions and snow peas and RED LIGHT, do not pass.
So, what now? My labwork is all perfect. PERFECT! Including the liver numbers. (The liver also looked great on the CT scan I had.) If I look so good on paper, why am I here? That is how we know the stricture was caused by scar tissue and most likely not Crohn's inflammation. I know, it seems confusing. It is ALL caused by Crohn's, but inflammation of systemic disease is treated differently than local inflammation. I have been given some powerful antibiotics, which I suppose are a "just in case" measure. I also have some lovely steroids on board, which have probably done a lot for me. I have progressed from nothing by mouth, through the clear liquid forest, and then through the Holland tunnel. Oh wait, I mean full liquids. Sorry. A day or so more of this and I can move on to a low residue, soft, gluten free diet. Which means ground meat and coffee. And I can live with that.
And I am still thinking, I should have stayed home. I mean really, this is going to cost us a fortune. And I know I can not put a price on my health, I can not put a price on being here for my family and being healthy for them. But I can, sorta. I probably could have made it through this without being hospitalized. Pain is something I don't even know how to measure anymore. I am not trying to sound like some sort of martyr or anything, but it's something you just learn to live with. So when they ask me to give it a number, I have a really hard time with that. I honestly can't tell you the worst pain I have had in my entire life. Pain is different- birth pain, back pain, (recently) foot pain, head pain, gut pain, meningitis pain. I have had the worst of all of that. It's very difficult to get past "it hurts" for me, so I never know when to say enough is enough. Early Thursday morning, clearly I felt it was enough. But today, feeling better, I can't help but think I could have just soldiered through it. I am not looking forward to opening the bills, that pain all forgotten, and think I made a huge mistake. It's sad that I, or anyone else in this world, needs to feel this way. If I had insurance, good insurance, I would be happy as a clam to undergo all the testing and narcotics they wanted to throw at me. I would be at my follow up appointment promptly in one week, and schedule the colonoscopy they are insisting on doing as soon as possible, as soon as possible. But instead, I will delay and rationalize as long as I can, giving the appearance of one who does not take her own care seriously.
But at least it's me. It's not my husband or one of my kids in this position. That would be a-whole-nother nightmare. I am grateful it's me, I know my body, I know my limits, and I know when to say when. When you are dealing with a loved one, all bets are off. Do it all, do what you must, just fix them! These crises seem to hit our family when we are the most challenged with regards to insurance. My daughter was hospitalized with Lyme disease when we were uninsured. Luckily, she qualified for Medicaid at that time. But now we are blessed with an income too large to qualify for that. My hospitalization for Lyme meningitis in 2008 was only 20% covered, and let me tell you, 80% of a six day stay with subsequent PICC line antibiotic infusions for 30 days is a fuggovalot of money. But it was 20% more coverage than we have today. So yeah, I am wishing I had stayed home.
This blog post is crazy long! I am stopping now. I think I have said it all.
I call these episodes "flares", which can be misleading, or confusing. For some with Crohn's disease, a flare is more of a chronic or longer term episode, where they feel miserable for weeks, and it takes even more weeks (or months) to get it all under control. For me, it really means an obstruction. There are, of course, many causes and types of obstructions, which most people who aren't familiar with Crohn's assume means a surgical, life threatening bowel obstruction. For many of us, however, it means for a variety of reasons the bowel has closed up and food can not pass. Instead of explaining all of that, I usually say "flare" and they say "Oh.", enough said.
I have had a few obstructions over the last few months, and each has been worse than the last. More painful, with vomiting (which I had been lucky to escape in the past) and more of an allover "I. am. dying." feeling. So the last time I had one and my husband couldn't open the bathroom door to check on me bacause I was passed out on it, we both agreed that next time, I was going to the hospital for pain relief. As you probably know, we are not insured, and before that we were inadequately insured, so I have been sort of suffering through these episodes with whatever medications I had on hand, and patiently knowing it would "pass" eventually. But the last few, I admit they have scared me a bit. So when the pain reached a certain level around 3am on Thursday morning, I woke Pat up and said "let's go."
I got here and was taken care of quickly, one of the benefits of coming in the middle of the night I suppose. I was given Dilaudud (I am a huge fan!) and Zofran, as nausea had set in by then. I got immediate relief from those medications. The doctor ordered a CT scan, and that's when the fear started setting in. All I saw were dollar signs floating above my head. Was I really that naive? Did I really think I would just get pain management and be on my way? I guess I didn't really care when I was actually IN pain, but when I was getting some relief I started to think a little more clearly, and all I thought was "I should have stayed home."
So then came the dreaded words no one wants to hear- "Mrs. Ryan, you have an obstruction and I am going to admit you to the hospital." After some strong lecturing on how a bowel obstruction can cause life threatening perforations of the bowel and ruling out infection could save my life, I agreed it was the best plan. Still seeing those dollar signs. $$$$$$
So I have learned a few things along the way these last two days. First, I have wondered how I could have an obstruction since I have no strictures. A stricture is a narrowing of the bowel, caused either by inflammation or scar tissue. I had an exam to determine that just last summer, and it was clear that I had no narrowing of the bowel anywhere. I was informed that with Crohn's, the inflammation can and does just "suddenly" occur. Actually, this is information I already knew, I probably just disregarded it as I have been relatively symptom free for so long, I didn't feel it was relevant. And at my age, I have to purge old information to make room for new information. My obstruction this time was caused by both scar tissue and that really good stir fry. Scar tissue will continue to build and build upon itself sometimes, which narrowed the section of my bowel that was previously resected. A little inflammation there (it only takes about a millimeter all the way around to close it off) along with crisp cooked carrots, onions and snow peas and RED LIGHT, do not pass.
So, what now? My labwork is all perfect. PERFECT! Including the liver numbers. (The liver also looked great on the CT scan I had.) If I look so good on paper, why am I here? That is how we know the stricture was caused by scar tissue and most likely not Crohn's inflammation. I know, it seems confusing. It is ALL caused by Crohn's, but inflammation of systemic disease is treated differently than local inflammation. I have been given some powerful antibiotics, which I suppose are a "just in case" measure. I also have some lovely steroids on board, which have probably done a lot for me. I have progressed from nothing by mouth, through the clear liquid forest, and then through the Holland tunnel. Oh wait, I mean full liquids. Sorry. A day or so more of this and I can move on to a low residue, soft, gluten free diet. Which means ground meat and coffee. And I can live with that.
And I am still thinking, I should have stayed home. I mean really, this is going to cost us a fortune. And I know I can not put a price on my health, I can not put a price on being here for my family and being healthy for them. But I can, sorta. I probably could have made it through this without being hospitalized. Pain is something I don't even know how to measure anymore. I am not trying to sound like some sort of martyr or anything, but it's something you just learn to live with. So when they ask me to give it a number, I have a really hard time with that. I honestly can't tell you the worst pain I have had in my entire life. Pain is different- birth pain, back pain, (recently) foot pain, head pain, gut pain, meningitis pain. I have had the worst of all of that. It's very difficult to get past "it hurts" for me, so I never know when to say enough is enough. Early Thursday morning, clearly I felt it was enough. But today, feeling better, I can't help but think I could have just soldiered through it. I am not looking forward to opening the bills, that pain all forgotten, and think I made a huge mistake. It's sad that I, or anyone else in this world, needs to feel this way. If I had insurance, good insurance, I would be happy as a clam to undergo all the testing and narcotics they wanted to throw at me. I would be at my follow up appointment promptly in one week, and schedule the colonoscopy they are insisting on doing as soon as possible, as soon as possible. But instead, I will delay and rationalize as long as I can, giving the appearance of one who does not take her own care seriously.
But at least it's me. It's not my husband or one of my kids in this position. That would be a-whole-nother nightmare. I am grateful it's me, I know my body, I know my limits, and I know when to say when. When you are dealing with a loved one, all bets are off. Do it all, do what you must, just fix them! These crises seem to hit our family when we are the most challenged with regards to insurance. My daughter was hospitalized with Lyme disease when we were uninsured. Luckily, she qualified for Medicaid at that time. But now we are blessed with an income too large to qualify for that. My hospitalization for Lyme meningitis in 2008 was only 20% covered, and let me tell you, 80% of a six day stay with subsequent PICC line antibiotic infusions for 30 days is a fuggovalot of money. But it was 20% more coverage than we have today. So yeah, I am wishing I had stayed home.
This blog post is crazy long! I am stopping now. I think I have said it all.
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