What a week, man.
Okay, well I am scheduled to start an infusion medication for the Crohn's disease next week; it's called Entyvio. I don't know much about it, other than it won't flare my MS unlike other Crohn's meds like Remicade.
Am I shocked I have Crohn's? Not one bit. But I don't really have Crohn's symptoms, so I have to take their word that the inflammation is consistent. I am hoping that the med will reduce things enough, but I am feeling like the surgeon on Wednesday is going to tell me I need to go under the knife and have a resection. I might need to have surgery in any case just to fix the bladder fistula, which I would probably welcome at this point, with the only exception to that feeling being that I am trying to get started at a new job here very soon and am anxious about the time frame for recovery. On the plus side, this particular location is notorious for taking a long time to "get in the system" (goodness knows it has already taken me a month to finalize everything, though I am expecting my offer this wee), so I am praying that it will take just a little bit longer and work in everyone's favor!!
I also had a meeting with my neurologist this week. I mentioned my struggles with spasticity, which have been particularly bad this last year (remember the foot attack at the Safeway incident?) So, she put me on Gabapentin. I'm slowly tapering that up, but probably won't take a huge amount as I am not really in need of that much of a change to be honest. Though I have not had the "eek I am about to have a spasm" feeling for the last few days since taking it, which is great, because I had three incidents of it in one night less than a week ago!
My neurologist was none too pleased that I was unmedicated for so long. I know that I made that decision for two reasons - 1, I couldn't afford the Gilenya with my Kaiser insurance for some reason, and 2, Steve and I were thinking that we might have a baby again this year. So being unmedicated made sense, as long as nothing bad happened between now and August. Well, that clearly did not happen! So she talked me into getting started with the Copaxone generic, called Glatopa, which is a daily injectable.
OY. I did it tonight, and man, this one hurt. I remember doing the subcutaneous injections with the Acthar years ago, but don't remember anything hurting this bad. I do recall one side of my abdomen hurting more than the other, and I feel like the left side was the better side, but I could be wrong and will need to go back and look. But it's been two hours since my injection and the site is still pretty painful. I am glad I did not get the heart-shattering, painful, "sense of impending doom" that some people get with this, haha, but pain is still no fun.
I will continue to update, and might give a video about doing the injectables one of these days. The best highlight of my weekend was a new baby - - I brought home a 2 month old ball python. I love her so much! Her name is Kaa. I haven't had a snake in years, and I just adore them. 2 year old daughter had a healthy sense of hesitation regarding the snake, but warmed up when we were putting her away - let's hope they grow together to love one another :)
Love to all,
MSloan
Showing posts with label uncomfortable tests. Show all posts
Showing posts with label uncomfortable tests. Show all posts
Sunday, March 4, 2018
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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