Ok, I have taken a Norco, I'm real calm.
You know, this medication definitely has a euphoric effect to it after the pain killing kicks in. I haven't taken one in about a week, as I'm trying to make sure I don't end up with a much bigger problem of addiction at the end of all this. But it definitely enhances the usual happiness I feel at the end of the day when I spend time at home with my daughter, my kitties, and my husband. It's like putting a magnifying glass on my usual "happy" level and turning it up. My daughter always makes me smile and laugh, but when I'm "under the influence," I almost want to break down in tears. I want to share it with everyone. I make a lot of Facebook posts when I'm on the Norco.
The best one tonight? I took a bite of my Chocolate Fudge Brownie ice cream and nearly fell over with delight. I haven't eaten that kind of ice cream in a long time. Now, I probably would have super enjoyed it anyway because of what my diet has been forced to do lately, but I know that the extra "kick" I felt was due to the Norco.
I had 2 days of colon prep before my colonoscopy a week ago. This time, the cleanse was successful - probably in no small part from the huge amount of laxatives I took three days before, the start of the prep two days before with the liquid diet, and my diligence to just choke down the rest of that drink. I went in to the appointment totally prepared and calm. I was even joking with the nurse who helped me out - it's amazing how different the experience is when you know that to expect, and that you're actually ready!
My gastroenterologist came to see me before they totally drugged me out, and she let me know that my MRI results showed a "long fistulous track." When I think back to my lower-right quadrant abdominal pain that plagued me in late 2014 (see November 2014 posting for details), I now know that it had to be the beginning of this. I have since read my abdominal MRI report and, while not as easy to understand as the brain MRIs now that I am familiar with the terminology, it seems evident that the end of my small intestines has a hole that leads into a pocket of fluid, and down into the dome of my bladder. The entire top of my bladder is inflamed. There is just NO WAY this all started from this past December when I had some abdominal pain for a week - while that might have been the tail end, I can't think that the great pain I had November 2014 is a coincidence. They never found anything, and I think the ultrasound tech was really concerned during that test because she saw something she couldn't understand.
I'm not stupid. I'm a doctor! HIDE YOUR CONFUSED FACE BETTER, PEOPLE!
Otherwise, I am living with things ok. The biggest trouble is what happens after the colon cleanses - I have to be on a liquid diet for a few days, which makes my bladder feel back to normal! Unfortunately as soon as I introduce solid food again, all my bladder symptoms start back up. It really hurts to urinate again; not at the start of the stream, but at the end, like the contraction is painful against all the inflammation. Debris in the urine, and cloudiness, like before my colonoscopy failure a few weeks ago. Today I had sharp and dull pain along the area where I know the fistula is now (coincidence that its the same spot as a few years ago? I think not!) I'm virtually incontinent when I feel an urge to go - when I actually make it to the restroom, my body just stops wanting to hold it, so I have to get my pants off NOW NOW NOW! So embarrassing. Thank God for pads!
So, on to another day! Love to all,
MSloan
Thursday, February 22, 2018
Wednesday, February 7, 2018
WTF?!
It didn't work.
This post may be TMI. But if you have ever had a colonoscopy, you will understand.
The bloody stuff didn't work.
The stupid, nauseating, saccharine, thick, disgusting stuff that I drank A GALLON OF didn't work! I went to my colonoscopy and wasn't cleared out! I stayed up all night, got 30 minutes grand total of sleep, and woke up panicked and super anxious. I was terrified they would turn me away and say they couldn't do the procedure today. Somehow I knew.
I got to the hospital alone. My husband dropped me off but had to take our kid to day care. So I walked in, by myself, and rushed up the stairs because he doesn't understand the meaning of "haste" when I told him I wanted to leave the house by 6:40 - not just barely leave by 6:50 and get there right at 7 AM. I wanted to be there early so I could breathe. NOPE. Instead they kept commenting that my blood pressure was high. No shit! I was having a panic attack that everything I had just done for the last three days was worth nothing - the reduction in food, the liquid diet for 24 hours, and the dreaded "colon prep."
What a bloody nightmare.
The upper endoscopy was very uncomfortable, even painful. I do remember it, though it isn't super vivid, thank goodness. I didn't feel like I was choking, just that I had some painful thing stuck down my throat. I even remember the little bit of colonoscopy that they did complete before they told me that my bowel was unclean and they had to abort - that did hurt. But I basically passed out right after that.
I woke up with my doctor telling me they needed to reschedule the colonoscopy. I am only grateful that I was able to get the upper endoscopy done today so it was not a complete waste of my time, energy, or money, as you forfeit the copay when they have to abort the procedure, because you're paying for all the prep and sedation. Nightmarish. And I have a meeting, a very important one, in two days. I am terrified that this will get in the way of all my new plans. I cannot have these issues right now! I am not even 30 years old, for crying out loud!
Now, next week, right after Valentine's day (and highly unlikely that my husband will get laid), I have to start TWO days of completely clear liquid diet and drink TWO gallons of the nauseating stuff. It is by far the worst part. That stuff.... let me tell you, I am a very picky eater, so being forced to down something that disgusting is pretty much my WORST nightmare. I would do anything for a pill instead, or a hundred pills. I would even drink 20 ounces of water every half hour if I had to, but not this stuff. I am just psyching myself out now that it won't work again, too.
What in the world is wrong with my body that I can take FIVE laxative tablets and drink an entire gallon of colon cleansing electrolytes and end up with basically nothing to show for it? Here I am, 24 hours after I began taking that stuff (which is supposed to start working within the hour, and totally clear your bowel out by hour 6) and I am still passing....well, it isn't clear, let's just say that.
I feel so tired. So sick of being sick. The fistula between my bowel and bladder is now leaking the disgusting fluid from the loose stools induced by that stuff. But I am so panicked that next week I will have the same problem that I'm tempted to go on liquid diet until then. Right now I'm going to pretend I'm eating like I just had my wisdom teeth out. I won't be taking any of the vicodin, because that can cause constipation, and I wonder how much of that is my issue now. The sluggish movement of my bowel might very well be part of this problem - and it may not be Crohn's at all.
She did get that endoscopy done, and took biopsies of my stomach and small intestine. Miraculously, my small intestine looked normal. My stomach was "inflamed." I don't know what any of that means and can't find much, other than it might possibly be H. Pylori (the ulcer bacteria).
Pray for me. Pray for my bowels. And pray that between now and next week that my insides move fast enough that I can get this damn test done and move on with my life!
MSloan
This post may be TMI. But if you have ever had a colonoscopy, you will understand.
The bloody stuff didn't work.
The stupid, nauseating, saccharine, thick, disgusting stuff that I drank A GALLON OF didn't work! I went to my colonoscopy and wasn't cleared out! I stayed up all night, got 30 minutes grand total of sleep, and woke up panicked and super anxious. I was terrified they would turn me away and say they couldn't do the procedure today. Somehow I knew.
I got to the hospital alone. My husband dropped me off but had to take our kid to day care. So I walked in, by myself, and rushed up the stairs because he doesn't understand the meaning of "haste" when I told him I wanted to leave the house by 6:40 - not just barely leave by 6:50 and get there right at 7 AM. I wanted to be there early so I could breathe. NOPE. Instead they kept commenting that my blood pressure was high. No shit! I was having a panic attack that everything I had just done for the last three days was worth nothing - the reduction in food, the liquid diet for 24 hours, and the dreaded "colon prep."
What a bloody nightmare.
The upper endoscopy was very uncomfortable, even painful. I do remember it, though it isn't super vivid, thank goodness. I didn't feel like I was choking, just that I had some painful thing stuck down my throat. I even remember the little bit of colonoscopy that they did complete before they told me that my bowel was unclean and they had to abort - that did hurt. But I basically passed out right after that.
I woke up with my doctor telling me they needed to reschedule the colonoscopy. I am only grateful that I was able to get the upper endoscopy done today so it was not a complete waste of my time, energy, or money, as you forfeit the copay when they have to abort the procedure, because you're paying for all the prep and sedation. Nightmarish. And I have a meeting, a very important one, in two days. I am terrified that this will get in the way of all my new plans. I cannot have these issues right now! I am not even 30 years old, for crying out loud!
Now, next week, right after Valentine's day (and highly unlikely that my husband will get laid), I have to start TWO days of completely clear liquid diet and drink TWO gallons of the nauseating stuff. It is by far the worst part. That stuff.... let me tell you, I am a very picky eater, so being forced to down something that disgusting is pretty much my WORST nightmare. I would do anything for a pill instead, or a hundred pills. I would even drink 20 ounces of water every half hour if I had to, but not this stuff. I am just psyching myself out now that it won't work again, too.
What in the world is wrong with my body that I can take FIVE laxative tablets and drink an entire gallon of colon cleansing electrolytes and end up with basically nothing to show for it? Here I am, 24 hours after I began taking that stuff (which is supposed to start working within the hour, and totally clear your bowel out by hour 6) and I am still passing....well, it isn't clear, let's just say that.
I feel so tired. So sick of being sick. The fistula between my bowel and bladder is now leaking the disgusting fluid from the loose stools induced by that stuff. But I am so panicked that next week I will have the same problem that I'm tempted to go on liquid diet until then. Right now I'm going to pretend I'm eating like I just had my wisdom teeth out. I won't be taking any of the vicodin, because that can cause constipation, and I wonder how much of that is my issue now. The sluggish movement of my bowel might very well be part of this problem - and it may not be Crohn's at all.
She did get that endoscopy done, and took biopsies of my stomach and small intestine. Miraculously, my small intestine looked normal. My stomach was "inflamed." I don't know what any of that means and can't find much, other than it might possibly be H. Pylori (the ulcer bacteria).
Pray for me. Pray for my bowels. And pray that between now and next week that my insides move fast enough that I can get this damn test done and move on with my life!
MSloan
Tuesday, January 30, 2018
Uncertainty
Well, not much to report. No change.
I am fairly certain that I have an enterovesical fistula - which means there is a passageway between my bowel and my bladder. This could explain all the weird urinary symptoms, with the absence of actual UTI. I think it's a little bit odd that they did not find air during CT (which is the telltale sign of EVF) - but all my other symptoms seem to fit.
I'm doing an at-home experiment as a result, called the poppyseed test. It's exactly what you think. I eat a shit ton of poppyseeds (luckily I have a total addiction to almond poppyseed muffins) and watch to see if I pass any poppyseeds from my urethra over the next couple of days.
I am fortunate that actually passing small things from my urethra no longer causes me unbelievable pain - it's now only slightly uncomfortable for the most part. I do occasionally have more pain, but it's few and far between. Wish I could say that things were healing, but my urine keeps changing and getting darker. I'm peeing blood again. So today it's not really getting better, but how I feel is getting more tolerable.
Wish I could report that my MS was totally chill right now - I'm hating the fact that my leg spasticity seems to be on the rise. Every morning when I stretch my right leg, it cramps up. It's likely just a side effect of everything from the steroids (which keep me awake, give me heartburn, make my voice scratchy, yadda yadda). Prednisone is seriously no fun. Can't wait to be finally tapered off - only about seven more days!!
My life feels like I am at another set of crossroads. It hasn't even been a year since I totally bailed from my first real job. I loved that job, but there were so many things wrong with that location. I just could not stay there any more, waiting for the ship to sink. I felt guilty and terrible. But it wasn't right.
Well, I feel like this just isn't right. It can't be right. I don't belong here!
There's gotta be something better than this
There's gotta be something better to do
And when I find me something better to do..
I'm gonna get up, I'm gonna get out, I'm gonna get up, get out, and do it!!
Love, MSloan
I am fairly certain that I have an enterovesical fistula - which means there is a passageway between my bowel and my bladder. This could explain all the weird urinary symptoms, with the absence of actual UTI. I think it's a little bit odd that they did not find air during CT (which is the telltale sign of EVF) - but all my other symptoms seem to fit.
I'm doing an at-home experiment as a result, called the poppyseed test. It's exactly what you think. I eat a shit ton of poppyseeds (luckily I have a total addiction to almond poppyseed muffins) and watch to see if I pass any poppyseeds from my urethra over the next couple of days.
I am fortunate that actually passing small things from my urethra no longer causes me unbelievable pain - it's now only slightly uncomfortable for the most part. I do occasionally have more pain, but it's few and far between. Wish I could say that things were healing, but my urine keeps changing and getting darker. I'm peeing blood again. So today it's not really getting better, but how I feel is getting more tolerable.
Wish I could report that my MS was totally chill right now - I'm hating the fact that my leg spasticity seems to be on the rise. Every morning when I stretch my right leg, it cramps up. It's likely just a side effect of everything from the steroids (which keep me awake, give me heartburn, make my voice scratchy, yadda yadda). Prednisone is seriously no fun. Can't wait to be finally tapered off - only about seven more days!!
My life feels like I am at another set of crossroads. It hasn't even been a year since I totally bailed from my first real job. I loved that job, but there were so many things wrong with that location. I just could not stay there any more, waiting for the ship to sink. I felt guilty and terrible. But it wasn't right.
Well, I feel like this just isn't right. It can't be right. I don't belong here!
There's gotta be something better than this
There's gotta be something better to do
And when I find me something better to do..
I'm gonna get up, I'm gonna get out, I'm gonna get up, get out, and do it!!
Love, MSloan
Tuesday, January 23, 2018
An Unhealthy Coping Strategy
Hi, my name is MSloan, and I am a shopaholic.
I started my addiction to shopping in 2009 shortly after I got married and fell into a deep depression. I felt completely alone in my life, despite marrying a wonderful man, and I felt like I had no real direction. I was applying to graduate school in the only thing I had ever really studied, and I really had issues with feeling satisfied with myself - how I looked, how I felt, how I dressed, and how I coped.
I started to get "sick" around this time - the infamous part of my life that I describe as such. I know now that it was the beginning of my MS. But then - I was just getting sick. Sick in an indescribable way. Sick in a way that made me dizzy and nauseated, in a way that made me hate who I was.
So what did I do? I went shopping.
I shopped and I shopped. I went to the JcPenney no less than three times per week. I was constantly crawling the mall, looking for sizes that fit. I bought lots of clothes of the same style in different colors. Some of these clothes I still have - but when you buy a lot of clothes at once, it's highly unlikely that you're purchasing quality stuff. The clothing I bought was much more professional than my every day life called for - I ended up standing out looking too old for my age, or above my "station." But I didn't care - I craved respect, because I couldn't give it to myself. I also had concerns about whether or not my clothes were modest enough - a change that I was making at this same time, adding more stress to the situation.
I didn't go into tremendous debt for my shopping, but I knew I had a problem. If I wasn't at home or at work, I was shopping. I walked into the Dress Barn on the corner of the Target lot probably as often as I went to the Target (which was often). I knew every inch of the store. I was at these stores so much, there was no point in shopping - I knew all the inventory. I shopped online. I learned that inventory. I memorized where clothes were on each page, which color I could buy it in, what size. I learned the names of styles and fabrics. I bought shoes. I bought jewelry. I kept shopping.
Since that time, I have learned that I can still slip into shopping addiction really quickly, especially when I am feeling low. This year, I have found myself falling back into that cycle. I thought I was feeling well enough about my circumstance, but clearly that's not true. I have bought literally thousands of dollars of clothes. While I am still not going into debt for my addiction, it is taking a toll on my savings, and what I had hoped to save up for. I bought $200 of clothing yesterday. I shouldn't be spending money at all - I have to pay for a colonoscopy, likely before the month is out.
What is wrong with me??
MSloan
I started my addiction to shopping in 2009 shortly after I got married and fell into a deep depression. I felt completely alone in my life, despite marrying a wonderful man, and I felt like I had no real direction. I was applying to graduate school in the only thing I had ever really studied, and I really had issues with feeling satisfied with myself - how I looked, how I felt, how I dressed, and how I coped.
I started to get "sick" around this time - the infamous part of my life that I describe as such. I know now that it was the beginning of my MS. But then - I was just getting sick. Sick in an indescribable way. Sick in a way that made me dizzy and nauseated, in a way that made me hate who I was.
So what did I do? I went shopping.
I shopped and I shopped. I went to the JcPenney no less than three times per week. I was constantly crawling the mall, looking for sizes that fit. I bought lots of clothes of the same style in different colors. Some of these clothes I still have - but when you buy a lot of clothes at once, it's highly unlikely that you're purchasing quality stuff. The clothing I bought was much more professional than my every day life called for - I ended up standing out looking too old for my age, or above my "station." But I didn't care - I craved respect, because I couldn't give it to myself. I also had concerns about whether or not my clothes were modest enough - a change that I was making at this same time, adding more stress to the situation.
I didn't go into tremendous debt for my shopping, but I knew I had a problem. If I wasn't at home or at work, I was shopping. I walked into the Dress Barn on the corner of the Target lot probably as often as I went to the Target (which was often). I knew every inch of the store. I was at these stores so much, there was no point in shopping - I knew all the inventory. I shopped online. I learned that inventory. I memorized where clothes were on each page, which color I could buy it in, what size. I learned the names of styles and fabrics. I bought shoes. I bought jewelry. I kept shopping.
Since that time, I have learned that I can still slip into shopping addiction really quickly, especially when I am feeling low. This year, I have found myself falling back into that cycle. I thought I was feeling well enough about my circumstance, but clearly that's not true. I have bought literally thousands of dollars of clothes. While I am still not going into debt for my addiction, it is taking a toll on my savings, and what I had hoped to save up for. I bought $200 of clothing yesterday. I shouldn't be spending money at all - I have to pay for a colonoscopy, likely before the month is out.
What is wrong with me??
MSloan
Monday, January 22, 2018
Another Question
Bladder cytology is negative for cancer cells - which is such a relief. I do not know if I could survive a disease that would require so much goings-on with my urethra.
On to gastroenterology. Let's hope they only find Crohn's and not malignancy there.
Pain pretty bad tonight - whatever it is, pray they figure it out soon.
MSloan
On to gastroenterology. Let's hope they only find Crohn's and not malignancy there.
Pain pretty bad tonight - whatever it is, pray they figure it out soon.
MSloan
Saturday, January 20, 2018
So Many Thoughts
Oy.
I really despise being sick. I feel like I've been sick my whole life.
I miss my mother, even though right now she would probably be the absolute worst person to have around in this time. She would likely make me feel ten times worse instead of better. Nonetheless, I miss her, and wish I had her to call and talk to.
I miss feeling like I had a best friend I could just call and cry to. I'm scared. I don't know why my body keeps doing these things, without warning, totally impacting everything I do on a daily basis.
My job is not working out. I love what I do, and I wouldn't change my career for the world, but this particular place is just not a good fit for me. I don't know if I should try to stick it out longer before leaving, or if I should just cut my losses now. I know they depend on me for these new locations, but there is so little business coming in besides what I brought with me from my last office. How depressing is that?
My husband is tired of me being sick just as much as I am. I haven't been able to have sex in two months. That's an even longer break than usual, simply because I haven't been feeling well, and now I am understandably anxious about having anything happen in the region where I'm bleeding and have pain up my urethra. I mean, if sex makes one vulnerable to UTIs anyway, this condition is making that possibility even more likely since I'm on the steroids. He's losing patience with me, I can feel it, even though he says he's not. It makes me worried that the support line I have at home is running out.
I wish I could feel the steroids doing something. Since yesterday's cystoscopy, my bladder hurts worse and my urine is yet again changing more colors. I'm confident that I'm not imminently going to die or something, but it's very nervewracking to look behind you after going to the bathroom and seeing a very unnatural sight. It makes me want to crawl in a corner, sleep all day. But I have a kid and I can't do that. I wish my sister or family was here so they could help with the kid and I could get some rest.
I am grateful for my daughter, who snuggles with me in the morning, who wiggles her little bum when watching TV, and gets excited for little things like eating oatmeal. She is truly the biggest delight in my life. I get tired of having to constantly be moving around her, but I wouldn't change her for the world. For this I have to keep my head up and remind myself every second why it doesn't matter what I'm feeling - if I allow her to grow up well, it won't matter how I'm feeling now.
That's what I'm telling myself.
MSloan
I really despise being sick. I feel like I've been sick my whole life.
I miss my mother, even though right now she would probably be the absolute worst person to have around in this time. She would likely make me feel ten times worse instead of better. Nonetheless, I miss her, and wish I had her to call and talk to.
I miss feeling like I had a best friend I could just call and cry to. I'm scared. I don't know why my body keeps doing these things, without warning, totally impacting everything I do on a daily basis.
My job is not working out. I love what I do, and I wouldn't change my career for the world, but this particular place is just not a good fit for me. I don't know if I should try to stick it out longer before leaving, or if I should just cut my losses now. I know they depend on me for these new locations, but there is so little business coming in besides what I brought with me from my last office. How depressing is that?
My husband is tired of me being sick just as much as I am. I haven't been able to have sex in two months. That's an even longer break than usual, simply because I haven't been feeling well, and now I am understandably anxious about having anything happen in the region where I'm bleeding and have pain up my urethra. I mean, if sex makes one vulnerable to UTIs anyway, this condition is making that possibility even more likely since I'm on the steroids. He's losing patience with me, I can feel it, even though he says he's not. It makes me worried that the support line I have at home is running out.
I wish I could feel the steroids doing something. Since yesterday's cystoscopy, my bladder hurts worse and my urine is yet again changing more colors. I'm confident that I'm not imminently going to die or something, but it's very nervewracking to look behind you after going to the bathroom and seeing a very unnatural sight. It makes me want to crawl in a corner, sleep all day. But I have a kid and I can't do that. I wish my sister or family was here so they could help with the kid and I could get some rest.
I am grateful for my daughter, who snuggles with me in the morning, who wiggles her little bum when watching TV, and gets excited for little things like eating oatmeal. She is truly the biggest delight in my life. I get tired of having to constantly be moving around her, but I wouldn't change her for the world. For this I have to keep my head up and remind myself every second why it doesn't matter what I'm feeling - if I allow her to grow up well, it won't matter how I'm feeling now.
That's what I'm telling myself.
MSloan
Friday, January 19, 2018
Uncomfortable Tests and How To Get Through Them, Part 2
Where were we...oh yes, possible kidney stones.
YIKES!
Well, I certainly thought it was a possibility, simply because of the pain level I was experiencing. Goodness, it was a tight, wave-like pain that made me feel terribly nauseated when it peaked. I lived through the pain for a day, having emailed my doctor at home, before calling an on-call doctor in Las Vegas (keep up people...we were away from home.) Because of the Pyridium, my urine was stained an odd color, so urinalysis would have essentially been useless, so the on-call doctor prescribed me a script of Bactrim to get rid of the suspected UTI. After all, if it wasn't a kidney stone, it was more likely to be a UTI, and I wanted to get rid of the pain and frustration of urgency as soon as possible.
So....back to the Walgreens across the street we went. Seriously, they should have given me a job, haha!
I started the Bactrim and had high hopes. Unfortunately, it made me really nauseated, and I felt no difference whatsoever. If you've never taken a heavy antibiotic like Bactrim for a UTI, know that most people feel better within hours of taking the drugs - I had been taking it for several days, and had no improvement. I began to dread going to the bathroom because there was so much pain. I was still passing small, red blood clots, and I was watching every drop in the toilet like a hawk in case there were stones of any kind. Nothing.
When we got back home, I finally got in to have my urinalysis. Surprise, it was no positive for an infection - which I had suspected as the Bactrim did nothing for my symptoms - but my sample did show both red and white blood cells. So something was up. My doctor and I talked more about my pain and possible kidney stones, so she ordered a CT scan. I haven't had a CT scan since i was a kid with ear issues - MRIs feel like such a hassle, while CT scans are fortunately much faster (and a bit less of an expensive copay). After waiting for a few more tense days, I finally got into the office for the CT scan.
All of us with MS will likely tell different accounts of how the contrast material for an MRI feels - most of the time you feel nothing at all; in my case, I usually get a headache afterwards. But that's about it. The iodine dye they use for CT scans is so different! It really does make you feel like you're wetting your pants (not a welcome feeling when you feel like you wet your pants all day - thank goodness for pads!) But the whole process only took about 15 minutes, and then I was ready to go.
As the busy doctor I am, I had a lecture to attend about 30 miles away, so I drove down there, still not knowing what to expect from the scan. I half expected them to tell me they found kidney stones or bladder stones, and also half expected her to tell me everything looked normal (which was not impossible). She called me while I was driving, and explained that the CT scan showed a lot of inflammation in my intestine - certainly not what I was expecting! She said she thought I had inflammatory bowel disease and asked if I had any family history of that; I do not, but as I said before, MS tends to travel with these kinds of conditions so it was not a surprise to me.
She continued and said I needed to visit with both gastroenterology for a colonoscopy, and with urology for a cystoscopy - eek! This was certainly a surprise. Did they think potential inflammatory bowel could be causing all my bladder and urinary issues? How? Did I have a hole in the system somewhere?
I went through my lecture, thinking about what she said. It was difficult to concentrate, but I generally felt ok - so I figured my weekend plans would go on uninterrupted.
The next morning, I was actually due to get on another plane and go for a business trip out of town - I woke up in so much pain that I couldn't do it. I never cancel things like this, and have attended every one of these meetings in the past despite feeling sick (it is that time of year - last year I had a nasty flu, ick!) I stayed home and ended up going to the ER for the pain, where they re-tested my urine for infection (which they did not find). I was eventually sent home after sending a few more vials of blood to the lab and a bottle of Vicodin. Thank goodness for it, too - I had also been prescribed daily Prednisone, which I knew would keep me awake at night.
Fast forward through this last week...my urine changed about eight different colors in three days. It ranged from normal-looking to dark orange, musty and murky greenish, pink on wiping, even more blood clots and even potential pus (yuck). Thursday was by far the worst day all week for pain, and while it no longer hurts to actually urinate, there is a sharp pain in my bladder that comes and goes, and is accompanied by stranger urine afterwards. The blood tests I had last Friday came in and showed my inflammatory markers were all on high alert - my erythrocyte sedimentation rate was >120 mm (off their charts). My C-reactive protein was 6.3. My platelet count rose from 570 to 740. Whatever is going on my body, it's an inflammatory mess!
AUGH. So, now we came to this morning. My visit with the urologist. He and I talked about my CT scan results and he kept saying the same thing - "If you were older, had a history of working in an environment with a lot of chemicals, or were an active smoker, these shadows on your CT scan would definitely spell bladder cancer." I think he was trying to make me feel better by saying it was highly unlikely that was the case - but putting it in these kinds of terms didn't really cut it, haha. After discussing the possibilities from looking at the CT scan, he said we had to do a scope.
Yup. Here it comes. Cystoscopy time, folks.
I had been dreading this. I saw a documentary sometime last year and saw someone who had to have her bladder examined for remnants of malignant cells. I remember having the thought - "I never want to have that test." Yup, that's what I had this morning.
Just like for a pap, they spread you wide in the dreaded stirrups. Then, they get fresh with the tip of your urethra - somehow an even more uncomfortable experience than the vagina. He came in and said he was putting something numbing there - it certainly didn't feel like numbing, it burned - and then they inserted this HUGE LOOKING tube up me. I won't lie. It hurt. Maybe it was because my urethra was already inflamed, but it was certainly more than "a little burning." I was miserable, but tried to be brave and made some jokes.
On the screen was the inside of my bladder - pink mostly, but some parts looked angry. I was definitely bleeding, and some tissue on the posterior wall (the culprit on the CT scan) looked almost coral-like. He again repeated, "Yeah, I would be really concerned about this if you were older or had a different history..." which again did not make me feel any better, as it seemed he was saying "it doesn't look good." He said it looked more like inflammation to him than cancer, but they would test it, but it was likely inflammation, but it might get worse before it gets better. I tried not to squirm when he moved the scope around and touched the inside of my bladder, causing more pain. AUGH. Just thinking about it makes me feel ooky!
So that's where we are. Yet another test that was inconclusive while we wait for more test results. We'll find out eventually if it's positive for cancer, but I doubt it. I don't get diseases that could be considered "sympathetic;" right now I'm just hoping they don't tell me I have some other lifelong condition that I will need to watch for the rest of my life.
Wish me luck.
And don't ever sign up for a cystoscopy. ::Shudder::
Love all, MSloan
YIKES!
Well, I certainly thought it was a possibility, simply because of the pain level I was experiencing. Goodness, it was a tight, wave-like pain that made me feel terribly nauseated when it peaked. I lived through the pain for a day, having emailed my doctor at home, before calling an on-call doctor in Las Vegas (keep up people...we were away from home.) Because of the Pyridium, my urine was stained an odd color, so urinalysis would have essentially been useless, so the on-call doctor prescribed me a script of Bactrim to get rid of the suspected UTI. After all, if it wasn't a kidney stone, it was more likely to be a UTI, and I wanted to get rid of the pain and frustration of urgency as soon as possible.
So....back to the Walgreens across the street we went. Seriously, they should have given me a job, haha!
I started the Bactrim and had high hopes. Unfortunately, it made me really nauseated, and I felt no difference whatsoever. If you've never taken a heavy antibiotic like Bactrim for a UTI, know that most people feel better within hours of taking the drugs - I had been taking it for several days, and had no improvement. I began to dread going to the bathroom because there was so much pain. I was still passing small, red blood clots, and I was watching every drop in the toilet like a hawk in case there were stones of any kind. Nothing.
When we got back home, I finally got in to have my urinalysis. Surprise, it was no positive for an infection - which I had suspected as the Bactrim did nothing for my symptoms - but my sample did show both red and white blood cells. So something was up. My doctor and I talked more about my pain and possible kidney stones, so she ordered a CT scan. I haven't had a CT scan since i was a kid with ear issues - MRIs feel like such a hassle, while CT scans are fortunately much faster (and a bit less of an expensive copay). After waiting for a few more tense days, I finally got into the office for the CT scan.
All of us with MS will likely tell different accounts of how the contrast material for an MRI feels - most of the time you feel nothing at all; in my case, I usually get a headache afterwards. But that's about it. The iodine dye they use for CT scans is so different! It really does make you feel like you're wetting your pants (not a welcome feeling when you feel like you wet your pants all day - thank goodness for pads!) But the whole process only took about 15 minutes, and then I was ready to go.
As the busy doctor I am, I had a lecture to attend about 30 miles away, so I drove down there, still not knowing what to expect from the scan. I half expected them to tell me they found kidney stones or bladder stones, and also half expected her to tell me everything looked normal (which was not impossible). She called me while I was driving, and explained that the CT scan showed a lot of inflammation in my intestine - certainly not what I was expecting! She said she thought I had inflammatory bowel disease and asked if I had any family history of that; I do not, but as I said before, MS tends to travel with these kinds of conditions so it was not a surprise to me.
She continued and said I needed to visit with both gastroenterology for a colonoscopy, and with urology for a cystoscopy - eek! This was certainly a surprise. Did they think potential inflammatory bowel could be causing all my bladder and urinary issues? How? Did I have a hole in the system somewhere?
I went through my lecture, thinking about what she said. It was difficult to concentrate, but I generally felt ok - so I figured my weekend plans would go on uninterrupted.
The next morning, I was actually due to get on another plane and go for a business trip out of town - I woke up in so much pain that I couldn't do it. I never cancel things like this, and have attended every one of these meetings in the past despite feeling sick (it is that time of year - last year I had a nasty flu, ick!) I stayed home and ended up going to the ER for the pain, where they re-tested my urine for infection (which they did not find). I was eventually sent home after sending a few more vials of blood to the lab and a bottle of Vicodin. Thank goodness for it, too - I had also been prescribed daily Prednisone, which I knew would keep me awake at night.
Fast forward through this last week...my urine changed about eight different colors in three days. It ranged from normal-looking to dark orange, musty and murky greenish, pink on wiping, even more blood clots and even potential pus (yuck). Thursday was by far the worst day all week for pain, and while it no longer hurts to actually urinate, there is a sharp pain in my bladder that comes and goes, and is accompanied by stranger urine afterwards. The blood tests I had last Friday came in and showed my inflammatory markers were all on high alert - my erythrocyte sedimentation rate was >120 mm (off their charts). My C-reactive protein was 6.3. My platelet count rose from 570 to 740. Whatever is going on my body, it's an inflammatory mess!
AUGH. So, now we came to this morning. My visit with the urologist. He and I talked about my CT scan results and he kept saying the same thing - "If you were older, had a history of working in an environment with a lot of chemicals, or were an active smoker, these shadows on your CT scan would definitely spell bladder cancer." I think he was trying to make me feel better by saying it was highly unlikely that was the case - but putting it in these kinds of terms didn't really cut it, haha. After discussing the possibilities from looking at the CT scan, he said we had to do a scope.
Yup. Here it comes. Cystoscopy time, folks.
I had been dreading this. I saw a documentary sometime last year and saw someone who had to have her bladder examined for remnants of malignant cells. I remember having the thought - "I never want to have that test." Yup, that's what I had this morning.
Just like for a pap, they spread you wide in the dreaded stirrups. Then, they get fresh with the tip of your urethra - somehow an even more uncomfortable experience than the vagina. He came in and said he was putting something numbing there - it certainly didn't feel like numbing, it burned - and then they inserted this HUGE LOOKING tube up me. I won't lie. It hurt. Maybe it was because my urethra was already inflamed, but it was certainly more than "a little burning." I was miserable, but tried to be brave and made some jokes.
On the screen was the inside of my bladder - pink mostly, but some parts looked angry. I was definitely bleeding, and some tissue on the posterior wall (the culprit on the CT scan) looked almost coral-like. He again repeated, "Yeah, I would be really concerned about this if you were older or had a different history..." which again did not make me feel any better, as it seemed he was saying "it doesn't look good." He said it looked more like inflammation to him than cancer, but they would test it, but it was likely inflammation, but it might get worse before it gets better. I tried not to squirm when he moved the scope around and touched the inside of my bladder, causing more pain. AUGH. Just thinking about it makes me feel ooky!
So that's where we are. Yet another test that was inconclusive while we wait for more test results. We'll find out eventually if it's positive for cancer, but I doubt it. I don't get diseases that could be considered "sympathetic;" right now I'm just hoping they don't tell me I have some other lifelong condition that I will need to watch for the rest of my life.
Wish me luck.
And don't ever sign up for a cystoscopy. ::Shudder::
Love all, MSloan
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