Hi, everyone! Sorry for this behemoth of a TMI post.
I'm a newly-diagnosed Crohnzie. I've been lurking the forum ever since I found out I had a fissure, which was in November. This place has been a constant source of inspiration and information, and I want to thank you all for being so open and contributing, as it really helps everyone. In that deck of reasoning, I figured I should follow suit.
I've never been able to put on weight, and during most strenuous activity during my life, I've reached the point just before people usually pass-out, but I've never actually blacked out, until I started taking NHB fighting classes ... which is where all this really started.
I never knew I had Crohn's or even suspected something was wrong, until my immune system decided it wanted to kill me. When I decided to get serious about being vegan (I had been vegan for years, but I was a total junk-food vegan) AND get serious about gaining weight, for someone who had Crohn's Disease and didn't know it, you could guess something bad was about to happen.
And it did. I went all-out trying to add more veggies and whole grains, while still eating the vegan equivalent of junk food (I had everything figured out from the best vegan donuts in town to the spiciest vegan sausages, etc, and I was eating ramen by the pound) I had reached 130 lbs (which at least for me was a miracle, even though I'm 5'9") when it started feeling like someone handed my gut bacteria a bunch of razor blades and told 'em to start a turf war. From that point on, it felt like I couldn't do anything. My first step was to rush to the Urgent Care doctor at Velo Med. Big mistake. The jerk took one look at my behind, turned his nose, didn't find anything, told me it was hemmorhoids, and I should increase my fiber intake as much as possible. That's when the pain spiked, and I first started taking sick days from work to recover. It's also when I really stopped eating. I noticed on the days after I fasted, I felt so much better, but I obviously couldn't maintain that lifestyle if I wanted to, y'know, live & breathe!
It was around mid-to-late-November when I went to see my PCP after first passing out in my martial arts class. After some bloodwork, she found I was blood & iron-deficient and vitamin-D deficient, as well as a bit low on B12, which shocked me, since I was expecting to be lower in a number of categories considering my self-imposed starvation. I thought the other shoe was going to drop then, even though I was hoping it was just dehydration. For the pain I was experiencing, she sent me to a good gastroenterologist, but by then the rectal area was hardening like a flexed muscle. This was about the same time I discovered that I could make the pain disappear by soaking in a bathtub.
At that point I had to move out of my living situation with my roommates - I needed my own darn bathroom! So during all of this, I made an emergency exodus to a one-bedroom apartment with free water - and good lord, that free water really comes in handy.
The GI doctor gave me a colonoscopy (My first! I'm 32 and never worried about anything like this), but while doing so, he found out I was almost a quart low on fluids (Remember that other shoe I was expecting? It dropped here.) and used the IV to fill me up. At that point he gave me the bad news - all the evidence pointed to Crohn's. (Which was confirmed via testing in late January)
As his proof, he displayed photos of my internals: a swiss-cheese-ulcered large intestine, an anal fissure, intense proctitis, inflammation throughout the large intestine, and evidence that the small intestine would be the same -- which an endoscopy proved in February.
The funny thing is, I've had stomach pain all my life, at times to the point where I would drop to the floor gasping for air. Sometimes it would last 5 seconds, other times an hour or two, but it would always dissipate fairly quickly. With that in mind, I always figured it was just my characteristic ADHD spasm & part of the territory; that I should just suck up and control it, since I didn't see anyone else doubling over every time they ate spicy food. It NEVER occurred to me that something worse was lying in wait within my entrails.
So, in late Jaunary, the GI doctor gave me Pentasa 500mg 4xday, and Prednisone 40mg/day, along with Diltiazem 1xday, various ointments, and told me to take sitz baths for the pain. Of course, the pain was so intense at this point that I was spending 6-8 hours a day in the tub, listening to podcasts, reading books, and watching Netflix on my phone. :-D, that was probably the only good thing about the whole experience. It seemed to be the only thing that worked for me.
Unfortunately, I think the excessive soaking (while usually helpful) along with a non-vegan liquid diet of Ensure (I was afraid to eat ANYTHING and by the end of January, was down to about 100lbs) caused an abscess, and some opportunistic bacteria was determined to drill through it like oil prospectors. Within the span of a week, the swelling down there was the size of a baseball, which on my small frame, prevented me from sitting down anywhere. Anything I ate or drank hurt like crazy on the way out. The doctors did NOT want to give me any kind of pain medication, and I was preparing to end it if this was all I had to look forward to.
Just before the endoscopy in February, the GI doctor took a second look at my new baseball-sized attraction, and surprise: it's an abscess! That's when he finally referred me to a surgeon, and prescribed antibiotics & a painkiller, Tramadol, which unfortunately, was too little, too late for this kind of pain; like beating a gorilla with a fly-swatter.
The surgeon was incredible. Throughout all of this, she and the nurses & secretaries from the GI doctor's office were just on-the-ball and so very helpful, I could cry. But especially the surgeon. During my consultation visit, she just fired away a host of questions and in 15 minutes, had the story of my life. It was amazing. I felt immediately that I could trust this woman to cut me open. Which, y'know, was kind of important, since that's what she was going to do ...
She gave me three options: 1. botox to numb the fissure and let it heal but it would cause incontinence, 2. pop the abscess, and 3. put in a seton. After reading through all of your experiences with these "options", I was forced to admit to her that doing all three was the best and only option (which she had initially suggested). And so, a week and a half later during surgery, she found two fistulas within the abscess, put two setons in, and bless her saintly heart, prescribed me oxycodone for the pain, which along with ice packs, really did make everything better.
I don't know how the rest of you deal with these awful setons. Personally, I don't mess with gauze; I just get the Men's Depends & wear 'em backwards to put all that padding to good use. Of course, that's also because the awful botox makes me incontinent. At age 32. Ugh.
During all this time, my GI doctor had me running test after test to ensure that I would be able to take Cimzia injections without complications, which he swore up & down would solve my biggest concern, which wasn't the Crohn's at all, but the proctitis and the fissure that keeps me FROM EATING ANYTHING. He was and is adamant that the Crohn's is causing the other symptoms.
So, finally, from November to April, at 5'9", I've gone from a skinny but healthy 130lbs to 99 lbs, have two setons, a pain in the behind, and my first pair of Cimzia injections! The stuff is like molasses.(After the first shot, I realized I'm so glad I'm not diabetic! Doing that everyday?! No way. It's sad, too, because I was just finally making my peace with my fear of blood-drawing needles, when suddenly I'm forced to give myself injections! Ha!) I'm also not even sure I'll be able to even take the Cimzia past the first 6 starter injections, because it's been a month and the insurance company still hasn't authorized it, and I still can't eat anything without severe pain.
That's it so far. I'm just tired, hungry, don't want to die, and I don't want to be in pain anymore. I am no longer lurking, and I have a great many questions to ask. I just wanted to share my story, ask some questions, and maybe provide a few answers for others.
Anyway, uh, yeah ... um,
HOWDY! GOOD MORNING!
I'm a newly-diagnosed Crohnzie. I've been lurking the forum ever since I found out I had a fissure, which was in November. This place has been a constant source of inspiration and information, and I want to thank you all for being so open and contributing, as it really helps everyone. In that deck of reasoning, I figured I should follow suit.
I've never been able to put on weight, and during most strenuous activity during my life, I've reached the point just before people usually pass-out, but I've never actually blacked out, until I started taking NHB fighting classes ... which is where all this really started.
I never knew I had Crohn's or even suspected something was wrong, until my immune system decided it wanted to kill me. When I decided to get serious about being vegan (I had been vegan for years, but I was a total junk-food vegan) AND get serious about gaining weight, for someone who had Crohn's Disease and didn't know it, you could guess something bad was about to happen.
And it did. I went all-out trying to add more veggies and whole grains, while still eating the vegan equivalent of junk food (I had everything figured out from the best vegan donuts in town to the spiciest vegan sausages, etc, and I was eating ramen by the pound) I had reached 130 lbs (which at least for me was a miracle, even though I'm 5'9") when it started feeling like someone handed my gut bacteria a bunch of razor blades and told 'em to start a turf war. From that point on, it felt like I couldn't do anything. My first step was to rush to the Urgent Care doctor at Velo Med. Big mistake. The jerk took one look at my behind, turned his nose, didn't find anything, told me it was hemmorhoids, and I should increase my fiber intake as much as possible. That's when the pain spiked, and I first started taking sick days from work to recover. It's also when I really stopped eating. I noticed on the days after I fasted, I felt so much better, but I obviously couldn't maintain that lifestyle if I wanted to, y'know, live & breathe!
It was around mid-to-late-November when I went to see my PCP after first passing out in my martial arts class. After some bloodwork, she found I was blood & iron-deficient and vitamin-D deficient, as well as a bit low on B12, which shocked me, since I was expecting to be lower in a number of categories considering my self-imposed starvation. I thought the other shoe was going to drop then, even though I was hoping it was just dehydration. For the pain I was experiencing, she sent me to a good gastroenterologist, but by then the rectal area was hardening like a flexed muscle. This was about the same time I discovered that I could make the pain disappear by soaking in a bathtub.
At that point I had to move out of my living situation with my roommates - I needed my own darn bathroom! So during all of this, I made an emergency exodus to a one-bedroom apartment with free water - and good lord, that free water really comes in handy.
The GI doctor gave me a colonoscopy (My first! I'm 32 and never worried about anything like this), but while doing so, he found out I was almost a quart low on fluids (Remember that other shoe I was expecting? It dropped here.) and used the IV to fill me up. At that point he gave me the bad news - all the evidence pointed to Crohn's. (Which was confirmed via testing in late January)
As his proof, he displayed photos of my internals: a swiss-cheese-ulcered large intestine, an anal fissure, intense proctitis, inflammation throughout the large intestine, and evidence that the small intestine would be the same -- which an endoscopy proved in February.
The funny thing is, I've had stomach pain all my life, at times to the point where I would drop to the floor gasping for air. Sometimes it would last 5 seconds, other times an hour or two, but it would always dissipate fairly quickly. With that in mind, I always figured it was just my characteristic ADHD spasm & part of the territory; that I should just suck up and control it, since I didn't see anyone else doubling over every time they ate spicy food. It NEVER occurred to me that something worse was lying in wait within my entrails.
So, in late Jaunary, the GI doctor gave me Pentasa 500mg 4xday, and Prednisone 40mg/day, along with Diltiazem 1xday, various ointments, and told me to take sitz baths for the pain. Of course, the pain was so intense at this point that I was spending 6-8 hours a day in the tub, listening to podcasts, reading books, and watching Netflix on my phone. :-D, that was probably the only good thing about the whole experience. It seemed to be the only thing that worked for me.
Unfortunately, I think the excessive soaking (while usually helpful) along with a non-vegan liquid diet of Ensure (I was afraid to eat ANYTHING and by the end of January, was down to about 100lbs) caused an abscess, and some opportunistic bacteria was determined to drill through it like oil prospectors. Within the span of a week, the swelling down there was the size of a baseball, which on my small frame, prevented me from sitting down anywhere. Anything I ate or drank hurt like crazy on the way out. The doctors did NOT want to give me any kind of pain medication, and I was preparing to end it if this was all I had to look forward to.
Just before the endoscopy in February, the GI doctor took a second look at my new baseball-sized attraction, and surprise: it's an abscess! That's when he finally referred me to a surgeon, and prescribed antibiotics & a painkiller, Tramadol, which unfortunately, was too little, too late for this kind of pain; like beating a gorilla with a fly-swatter.
The surgeon was incredible. Throughout all of this, she and the nurses & secretaries from the GI doctor's office were just on-the-ball and so very helpful, I could cry. But especially the surgeon. During my consultation visit, she just fired away a host of questions and in 15 minutes, had the story of my life. It was amazing. I felt immediately that I could trust this woman to cut me open. Which, y'know, was kind of important, since that's what she was going to do ...
She gave me three options: 1. botox to numb the fissure and let it heal but it would cause incontinence, 2. pop the abscess, and 3. put in a seton. After reading through all of your experiences with these "options", I was forced to admit to her that doing all three was the best and only option (which she had initially suggested). And so, a week and a half later during surgery, she found two fistulas within the abscess, put two setons in, and bless her saintly heart, prescribed me oxycodone for the pain, which along with ice packs, really did make everything better.
I don't know how the rest of you deal with these awful setons. Personally, I don't mess with gauze; I just get the Men's Depends & wear 'em backwards to put all that padding to good use. Of course, that's also because the awful botox makes me incontinent. At age 32. Ugh.
During all this time, my GI doctor had me running test after test to ensure that I would be able to take Cimzia injections without complications, which he swore up & down would solve my biggest concern, which wasn't the Crohn's at all, but the proctitis and the fissure that keeps me FROM EATING ANYTHING. He was and is adamant that the Crohn's is causing the other symptoms.
So, finally, from November to April, at 5'9", I've gone from a skinny but healthy 130lbs to 99 lbs, have two setons, a pain in the behind, and my first pair of Cimzia injections! The stuff is like molasses.(After the first shot, I realized I'm so glad I'm not diabetic! Doing that everyday?! No way. It's sad, too, because I was just finally making my peace with my fear of blood-drawing needles, when suddenly I'm forced to give myself injections! Ha!) I'm also not even sure I'll be able to even take the Cimzia past the first 6 starter injections, because it's been a month and the insurance company still hasn't authorized it, and I still can't eat anything without severe pain.
That's it so far. I'm just tired, hungry, don't want to die, and I don't want to be in pain anymore. I am no longer lurking, and I have a great many questions to ask. I just wanted to share my story, ask some questions, and maybe provide a few answers for others.
Anyway, uh, yeah ... um,
HOWDY! GOOD MORNING!
Happy, thanks for the info! I haven't tried the MiraLax, yet, but I will look into it immediately!
