- Joined
- Mar 27, 2012
- Messages
- 1
Ach, which one of those do I pick??
My name is Laura, I'm 31, super active, super busy wife & mother of 3. I have been super healthy all my life, to the point where I can honestly say that I don't think I've had a flu in over 20 years. I get a cold maybe once a year, but otherwise have an amazing immune system...so amazing, apparently, that it just stopped shutting off!
My only unhealthy bit has been that for the past 13 years, I have struggled on and off with super intense digestive issues. In the fall of '98, I started my freshman year of college, I'd had some infrequent but bothersome issues growing up with bloody stool, or ups & downs in constipation/diarrhea, and occasional abdominal cramping & nausea, which was always chalked up to "Honey, you carry your stress in your belly!". However, the following January ('99) all of a sudden the diarrhea began. It came on all of a sudden, with such awful bout I thought I had food poisoning. When it didn't go away, I went in to a local GP (I have always hated doctors, dentists and the like, and avoid at all cost unless I'm pretty sure I'm close to death!). After a basic stool test, she flippantly told me I had Ulcerative Colitis & sent me out the door with a prescription, and a "have a nice day". (keep in mind, at this point, I was 18-years-old, living away from my parents, completely on my own with all of this.)
I had no idea what the "disease" she diagnosed me with was, and honestly I have no idea what medication it was. However, I took it for a couple days and my symptoms got SO much worse from the medication, that I tossed it out and thought - "obviously I don't have UC, because the meds for that just made it worse." So I toughed it out for the next year and a half...somedays it would be better and I'd think I was going to get better, but most days in that beginning time frame, I'd have probably 3-4/day but always super loose.
During the summer of 2000, I worked at summer camp and was on a daily food intake regimen of camp-mess-hall cooking, soft-serve ice cream and unlimited sugar from the camp store. Horrible for anyone, but especially horrible for my symptoms. Midway through the summer my diarrhea got so bad I was having to go almost every 2 hours, and would be DESPERATE to get to a bathroom. It was so awful that soon it began to be incredibly painful, searing pain at point of exit, burning & stinging from the constant discharge of acidic liquid, and very quickly became bloody. No matter what I ate, it always came out as water. After a week or so of my miserable digestive existence, one day was so incredibly bad that I called my mom who immediately took me to the Emergency Room.
There, the ER docs proceeded to give me once over & immodium, and referred me to a local GI specialist.
At my GI appt, he scheduled a sigmoidoscopy, which they performed with no sedation at all - extremely uncomfortable and a horrible intro for my 19-year-old self to the world of Gastroenterology. After the Sig was done, he said that he couldn't see anything - definitely no UC (as prev. doctor had diagnosed) - and he sent me away with "I guess you have Irritable Bowel Syndrome, so best thing to do is read these brochures on IBS and go purchase a cooking for IBS cookbook to help alter your diet."
I was floored, and frustrated, but SO done with doctors & procedures and my awful experience with that GI that I bought the cookbook, looked at a list of what to avoid, and promptly put it on a shelf & went on with life. After another week or so, the summer ended, and I went back to school - my eating went back to semi-normal school cafeteria food...(not as much dairy, fats & high-sugar contents) and my symptoms once again became somewhat bearable.
For the next 12 years, there isn't much to say, other than I loved being pregnant, because only when I was pregnant (or had taken immodium) did I not suffer from diarrhea. I learned over time how to control it to a bearable 2-3x daily output, and I learned that I was extremely dairy/lactose intolerant, so I cut out dairy about 6 years ago. Through trial and error, I found things within my diet that seemed to exacerbate my symptoms, things like deep-fried foods, any raw dairy (although hard cheeses weren't as bad, yogurt is a definite NO), any "lactose-free" products like Lactaid were instant bathroom breakers, super spicy food, yummy rich sauces, teriyakis, etc...over the last 6 years or so I've learned to take things out of my diet & manage my own "symptoms". Also, over the past 10 years of my horrendous digestive difficulties, I developed significant external hemorrhoids - so in the fall of 2011, as a "freebie" on our insurance from covering our deductible, I decided to get a hemorrhoidectomy. My general surgeon (amazing doctor, one of the first positive doc experiences I ever had) through off-handed comments of mine & ensuing conversation, became very concerned that my original GI doc had not done a full colonoscopy when presented with my symptoms. He strongly encouraged me to see another recommended GI, and request a colonoscopy.
For once, I was relieved that someone had actually been concerned with my symptoms! I had always felt like they were troublesome to me, but every doc I had seen had made it all out to be not a big deal!
I proceeded to see the recommended GI, and from there went into a full-schedule of Colonoscopy, Endoscopy, biopsies, blood testing, & MRI. She found inflammation in my small intestine, and developed Fistulae on the MRI. My biopsies had presence of Granuloma (sp?) which she said in doctor-speak was a "slam-dunk" for Crohn's.
Due to the extent of inflammation and the presence of Fistulae, she is recommending Step-down treatment, with options of Remicade infusion, or Humira.
I am meeting with a second GI on April 3rd, to get a second opinion of her treatment plan.
My concern is that over the past few years or so - I guess I've been in a "remission" of sorts as I still have really loose BM most of the time, but I feel like I'm not on my death-bed or in absolute misery as I have been reading about some of the Remi/humira patients are. My concern is that the treatment plan is too advanced for my needs/symptoms right now.
My fistulae is asymptomatic and therefore doesn't need removal, I'm not in need of surgeries, everything is functioning properly other than the inflammation & symptoms.
She did prescribe me a 2-week trial (supply of product samples) of Pentasa & Entocort, which actually made me feel like I was back to Normal! (WHAT IS NORMAL??? LOL) which I honestly don't even know what to do with because at "normal" I feel constipated, even though I'm not!
Anyways, as soon as the 2-week trial was over, I'm back to my "everything goes right through me" self - even though I'm on a self-prescribed GF (or mostly GF) diet and a doc-prescribed Dairy Free diet...and I eat SUPER healthy and do 6x week intense exercise regimen.
Anyways - I'm honestly not sure what to do with the diagnosis at this point. At first - after the diagnosis "call", I cried - and I do NOT cry. I think I felt relieved that finally, after 13 years of dealing with this - that I finally had a legit medical answer to my problems. It was like complete affirmation that I wasn't a crazy-hypochondriac-ball-of-stress. After that - I was completely exhausted for about 2 weeks - slept as much as I could, walked around like a zombie - almost because for the first time ever, I had a medical excuse as to why I was so tired at random points in time. It was like it gave me the freedom to accept all those feelings & symptoms, and I admit I completely went overboard for that two weeks and milked it for all it was worth!
After I kicked that exhaustive self-pity, I became increasingly concerned because I am a woman who cares (in a healthy, balanced way) about my appearance, and my ability to stay active both for myself and with my family. And, the bottom line was - the only people i ever HEARD about having "Crohn's" were the people who were prayed over at church because they were being hospitalized multiple times, or needed meals for their family because they couldn't function, or so-and-so's cousin has crohn's and has been in the hospital for a week, or is getting a colostomy bag...honestly, its a bit of a freak-out point for me.
I think the main thing I struggle with is that I was always the "strong" one - I always have acted that way and lived that way - I never get sick, and I'm always the one to take care of others when they are sick - I'm very independent, and I am terrified at the thought of having to be labeled as "the weak one" - that terrifies me more than anything. I don't want to be the "broken" one, don't want to be the one that walks into the room and everyone says "how unfortunate..."
Lastly, it's a bit overwhelming. I read on askapatient.com about Remicade & Humira and I know I have to take it with a grain of salt because rarely do people look for a place to post a note when they love a medication! LOL - but the reviews on both of those scared me incredibly, and I don't really feel like my symptoms at the moment warrant such a strong intense treatment plan. If I could get away with being on a lower level med that wouldn't mess me up & make me have psoriasis & hair loss & RA & where I could still be my lean, active, healthy trim self with great skin... (is that even possible? I told you - It's a HEALTHY balance, but it is important to me!! - probably goes more along the lines of wanting to still be identified with the strong, and not the weak)...
I would love to be able to have a medication that helps me manage symptoms while not having to adhere to as strict a diet as I have been...but maybe that's not possible. I'd love to live as normal of a life as possible, but even then, I'm not sure I know enough about Crohn's to know if that's possible.
Is hospitalization inevitable? Is it feasible that on a treatment plan that works with my body, that I could live a fairly normal existence?
I wish there was a traveling Seminar on Crohn's or something that I could go to and learn all about the disease & treatment options & such...and the vendor booths could be drug vendors or treatment centers or naturopathic options...LOL in a perfect world, no?
Anyways, if you've made it to the bottom of this novel - I applaud you - you're amazing! Thanks for the forum, thanks for the support as I know already that just knowing there's a common ground to find others like me - is comforting.
Any words of wisdom on treatment plans or those two Remi/Humira would be welcome - although I just saw there's a forum for that...I'll go check them out
God bless,
Laura
My name is Laura, I'm 31, super active, super busy wife & mother of 3. I have been super healthy all my life, to the point where I can honestly say that I don't think I've had a flu in over 20 years. I get a cold maybe once a year, but otherwise have an amazing immune system...so amazing, apparently, that it just stopped shutting off!
My only unhealthy bit has been that for the past 13 years, I have struggled on and off with super intense digestive issues. In the fall of '98, I started my freshman year of college, I'd had some infrequent but bothersome issues growing up with bloody stool, or ups & downs in constipation/diarrhea, and occasional abdominal cramping & nausea, which was always chalked up to "Honey, you carry your stress in your belly!". However, the following January ('99) all of a sudden the diarrhea began. It came on all of a sudden, with such awful bout I thought I had food poisoning. When it didn't go away, I went in to a local GP (I have always hated doctors, dentists and the like, and avoid at all cost unless I'm pretty sure I'm close to death!). After a basic stool test, she flippantly told me I had Ulcerative Colitis & sent me out the door with a prescription, and a "have a nice day". (keep in mind, at this point, I was 18-years-old, living away from my parents, completely on my own with all of this.)
I had no idea what the "disease" she diagnosed me with was, and honestly I have no idea what medication it was. However, I took it for a couple days and my symptoms got SO much worse from the medication, that I tossed it out and thought - "obviously I don't have UC, because the meds for that just made it worse." So I toughed it out for the next year and a half...somedays it would be better and I'd think I was going to get better, but most days in that beginning time frame, I'd have probably 3-4/day but always super loose.
During the summer of 2000, I worked at summer camp and was on a daily food intake regimen of camp-mess-hall cooking, soft-serve ice cream and unlimited sugar from the camp store. Horrible for anyone, but especially horrible for my symptoms. Midway through the summer my diarrhea got so bad I was having to go almost every 2 hours, and would be DESPERATE to get to a bathroom. It was so awful that soon it began to be incredibly painful, searing pain at point of exit, burning & stinging from the constant discharge of acidic liquid, and very quickly became bloody. No matter what I ate, it always came out as water. After a week or so of my miserable digestive existence, one day was so incredibly bad that I called my mom who immediately took me to the Emergency Room.
There, the ER docs proceeded to give me once over & immodium, and referred me to a local GI specialist.
At my GI appt, he scheduled a sigmoidoscopy, which they performed with no sedation at all - extremely uncomfortable and a horrible intro for my 19-year-old self to the world of Gastroenterology. After the Sig was done, he said that he couldn't see anything - definitely no UC (as prev. doctor had diagnosed) - and he sent me away with "I guess you have Irritable Bowel Syndrome, so best thing to do is read these brochures on IBS and go purchase a cooking for IBS cookbook to help alter your diet."
I was floored, and frustrated, but SO done with doctors & procedures and my awful experience with that GI that I bought the cookbook, looked at a list of what to avoid, and promptly put it on a shelf & went on with life. After another week or so, the summer ended, and I went back to school - my eating went back to semi-normal school cafeteria food...(not as much dairy, fats & high-sugar contents) and my symptoms once again became somewhat bearable.
For the next 12 years, there isn't much to say, other than I loved being pregnant, because only when I was pregnant (or had taken immodium) did I not suffer from diarrhea. I learned over time how to control it to a bearable 2-3x daily output, and I learned that I was extremely dairy/lactose intolerant, so I cut out dairy about 6 years ago. Through trial and error, I found things within my diet that seemed to exacerbate my symptoms, things like deep-fried foods, any raw dairy (although hard cheeses weren't as bad, yogurt is a definite NO), any "lactose-free" products like Lactaid were instant bathroom breakers, super spicy food, yummy rich sauces, teriyakis, etc...over the last 6 years or so I've learned to take things out of my diet & manage my own "symptoms". Also, over the past 10 years of my horrendous digestive difficulties, I developed significant external hemorrhoids - so in the fall of 2011, as a "freebie" on our insurance from covering our deductible, I decided to get a hemorrhoidectomy. My general surgeon (amazing doctor, one of the first positive doc experiences I ever had) through off-handed comments of mine & ensuing conversation, became very concerned that my original GI doc had not done a full colonoscopy when presented with my symptoms. He strongly encouraged me to see another recommended GI, and request a colonoscopy.
For once, I was relieved that someone had actually been concerned with my symptoms! I had always felt like they were troublesome to me, but every doc I had seen had made it all out to be not a big deal!
I proceeded to see the recommended GI, and from there went into a full-schedule of Colonoscopy, Endoscopy, biopsies, blood testing, & MRI. She found inflammation in my small intestine, and developed Fistulae on the MRI. My biopsies had presence of Granuloma (sp?) which she said in doctor-speak was a "slam-dunk" for Crohn's.
Due to the extent of inflammation and the presence of Fistulae, she is recommending Step-down treatment, with options of Remicade infusion, or Humira.
I am meeting with a second GI on April 3rd, to get a second opinion of her treatment plan.
My concern is that over the past few years or so - I guess I've been in a "remission" of sorts as I still have really loose BM most of the time, but I feel like I'm not on my death-bed or in absolute misery as I have been reading about some of the Remi/humira patients are. My concern is that the treatment plan is too advanced for my needs/symptoms right now.
My fistulae is asymptomatic and therefore doesn't need removal, I'm not in need of surgeries, everything is functioning properly other than the inflammation & symptoms.
She did prescribe me a 2-week trial (supply of product samples) of Pentasa & Entocort, which actually made me feel like I was back to Normal! (WHAT IS NORMAL??? LOL) which I honestly don't even know what to do with because at "normal" I feel constipated, even though I'm not!
Anyways, as soon as the 2-week trial was over, I'm back to my "everything goes right through me" self - even though I'm on a self-prescribed GF (or mostly GF) diet and a doc-prescribed Dairy Free diet...and I eat SUPER healthy and do 6x week intense exercise regimen.
Anyways - I'm honestly not sure what to do with the diagnosis at this point. At first - after the diagnosis "call", I cried - and I do NOT cry. I think I felt relieved that finally, after 13 years of dealing with this - that I finally had a legit medical answer to my problems. It was like complete affirmation that I wasn't a crazy-hypochondriac-ball-of-stress. After that - I was completely exhausted for about 2 weeks - slept as much as I could, walked around like a zombie - almost because for the first time ever, I had a medical excuse as to why I was so tired at random points in time. It was like it gave me the freedom to accept all those feelings & symptoms, and I admit I completely went overboard for that two weeks and milked it for all it was worth!
After I kicked that exhaustive self-pity, I became increasingly concerned because I am a woman who cares (in a healthy, balanced way) about my appearance, and my ability to stay active both for myself and with my family. And, the bottom line was - the only people i ever HEARD about having "Crohn's" were the people who were prayed over at church because they were being hospitalized multiple times, or needed meals for their family because they couldn't function, or so-and-so's cousin has crohn's and has been in the hospital for a week, or is getting a colostomy bag...honestly, its a bit of a freak-out point for me.
I think the main thing I struggle with is that I was always the "strong" one - I always have acted that way and lived that way - I never get sick, and I'm always the one to take care of others when they are sick - I'm very independent, and I am terrified at the thought of having to be labeled as "the weak one" - that terrifies me more than anything. I don't want to be the "broken" one, don't want to be the one that walks into the room and everyone says "how unfortunate..."
Lastly, it's a bit overwhelming. I read on askapatient.com about Remicade & Humira and I know I have to take it with a grain of salt because rarely do people look for a place to post a note when they love a medication! LOL - but the reviews on both of those scared me incredibly, and I don't really feel like my symptoms at the moment warrant such a strong intense treatment plan. If I could get away with being on a lower level med that wouldn't mess me up & make me have psoriasis & hair loss & RA & where I could still be my lean, active, healthy trim self with great skin... (is that even possible? I told you - It's a HEALTHY balance, but it is important to me!! - probably goes more along the lines of wanting to still be identified with the strong, and not the weak)...
I would love to be able to have a medication that helps me manage symptoms while not having to adhere to as strict a diet as I have been...but maybe that's not possible. I'd love to live as normal of a life as possible, but even then, I'm not sure I know enough about Crohn's to know if that's possible.
Is hospitalization inevitable? Is it feasible that on a treatment plan that works with my body, that I could live a fairly normal existence?
I wish there was a traveling Seminar on Crohn's or something that I could go to and learn all about the disease & treatment options & such...and the vendor booths could be drug vendors or treatment centers or naturopathic options...LOL in a perfect world, no?
Anyways, if you've made it to the bottom of this novel - I applaud you - you're amazing!
Thanks for the forum, thanks for the support as I know already that just knowing there's a common ground to find others like me - is comforting. Any words of wisdom on treatment plans or those two Remi/Humira would be welcome - although I just saw there's a forum for that...I'll go check them out
God bless,
Laura
