My journey with Crohn's started nearly 5 years ago, at the age of 24. I had been morbidly obese since birth, pretty much. The first few months of symptoms appearing, I didn't have a regular doctor, but was told by numerous ER doctors and a couple walk-in clinics physicians that I just had heartburn. Unfortunately my large mass blinded the medical community to what was really going on.
When I insisted it wasn't normal for me to be vomiting every meal, continual excruciating abdominal pain, and to have blood in my stools, astonishingly I was still told to just take heartburn medications and that I'd be fine. I got so upset and felt so alone that I swore off doctors for a year. During that year, I dropped 200 pounds. I had always worn stretchy clothes, so I actually was unaware of my crazy-large weight loss (I figured I'd lost 30 pounds or so- it's completely bizarre, I know), until I happened to step on a scale-something I typically avoided-and was bewildered by the number looming back at me.
The first 17 months of Crohn's were pure hell-I had yet to be diagnosed, I lost an additional 62 pounds (totaling 262 pounds- I was 188 lbs. at my smallest), at that time I lived in a town states away from everyone I knew, I was scared I had cancer and was dying, and I couldn't physically work anymore and knew only a few people locally so I lost everything I owned-my car, cellphone, apartment- and ended up living in a homeless shelter for a few months. Absolutely the most terrifying time in my life.
The homeless shelter hooked my up with DSHS and I finally went back to see a specialist. That time around they took things incredibly seriously, probably because I had lost a crazy amount of weight in such a short time, looked like death warmed over, and had to be wheelchaired everywhere.
Over the last 3 and a half years since then, I've gained back 60 pounds from on and off again use of Prednisone. I'll lose 30 pounds or so and then gain it right back when I'm flaring. I've tried almost everything out there as far as supplements, steroids, run of the mill Crohn's meds, several biologics, and a plethora of specialized diets. I started taking Low Dose Naltrexone in the middle of April of this year and after about 6 weeks I felt AWESOME! For the first time since I first started experiencing symptoms I felt great. I started working out an hour a day, was eating a gluten-, sugar-, and mostly dairy-free diet, slowly regaining energy back, drinking a gallon of water a day(with my primary care doctor's approval).
Then 3 weeks ago I foolishly took Chia Seed supplements to help with getting fiber. Gluten free diets often lack fiber, and since I was feeling so well, I completely spaced checking to make sure the supplement wouldn't exacerbate the Crohn's. I have never made such a stupid, destructive oversight before and I'm SSOOOOO angry at myself because I have been in great misery the last 3 weeks all because for two days I took those pills before it dawned on me to check if they'd be bad with Crohn's.
I've been in bed for days and currently 1 Ensure is all I've managed to get down today, and I'm feeling pain from the Ensure. I don't know what to do. This pain is so intense, I'm starting to go loopy. Even when I've gone to the ER after not eating or drinking anything for 4 to 5 days in a row and being in intense pain, I always get sent home after I'm rehydrated- it's beyond me as to why I'm never admitted.
The Crohn's and UC are both classified as moderate to severe and I've been on Social Security since August 2010 due to the unceasing symptoms. Why would I never be admitted? My system needs a break and needs an IV drip for fluid! My specialist is a great guy and aware of my flare up, but just said to continue with 1 Humira shot every other week and 25 mg Methotrexate (pill form) every week. He doesn't believe in painkiller and doesn't prescribe any, and I've only ever had painkiller a few months throughout this whole 5 years, so I've learned to deal with the injustice.
I just want to be able to get out of bed (currently using a selfmade bedpan), drink without tormenting pain, and get some quality of life back. Thanks to anyone who read this fully. That is my story. Feedback and suggestions gladly appreciated
When I insisted it wasn't normal for me to be vomiting every meal, continual excruciating abdominal pain, and to have blood in my stools, astonishingly I was still told to just take heartburn medications and that I'd be fine. I got so upset and felt so alone that I swore off doctors for a year. During that year, I dropped 200 pounds. I had always worn stretchy clothes, so I actually was unaware of my crazy-large weight loss (I figured I'd lost 30 pounds or so- it's completely bizarre, I know), until I happened to step on a scale-something I typically avoided-and was bewildered by the number looming back at me.
The first 17 months of Crohn's were pure hell-I had yet to be diagnosed, I lost an additional 62 pounds (totaling 262 pounds- I was 188 lbs. at my smallest), at that time I lived in a town states away from everyone I knew, I was scared I had cancer and was dying, and I couldn't physically work anymore and knew only a few people locally so I lost everything I owned-my car, cellphone, apartment- and ended up living in a homeless shelter for a few months. Absolutely the most terrifying time in my life.
The homeless shelter hooked my up with DSHS and I finally went back to see a specialist. That time around they took things incredibly seriously, probably because I had lost a crazy amount of weight in such a short time, looked like death warmed over, and had to be wheelchaired everywhere.
Over the last 3 and a half years since then, I've gained back 60 pounds from on and off again use of Prednisone. I'll lose 30 pounds or so and then gain it right back when I'm flaring. I've tried almost everything out there as far as supplements, steroids, run of the mill Crohn's meds, several biologics, and a plethora of specialized diets. I started taking Low Dose Naltrexone in the middle of April of this year and after about 6 weeks I felt AWESOME! For the first time since I first started experiencing symptoms I felt great. I started working out an hour a day, was eating a gluten-, sugar-, and mostly dairy-free diet, slowly regaining energy back, drinking a gallon of water a day(with my primary care doctor's approval).
Then 3 weeks ago I foolishly took Chia Seed supplements to help with getting fiber. Gluten free diets often lack fiber, and since I was feeling so well, I completely spaced checking to make sure the supplement wouldn't exacerbate the Crohn's. I have never made such a stupid, destructive oversight before and I'm SSOOOOO angry at myself because I have been in great misery the last 3 weeks all because for two days I took those pills before it dawned on me to check if they'd be bad with Crohn's.
I've been in bed for days and currently 1 Ensure is all I've managed to get down today, and I'm feeling pain from the Ensure. I don't know what to do. This pain is so intense, I'm starting to go loopy. Even when I've gone to the ER after not eating or drinking anything for 4 to 5 days in a row and being in intense pain, I always get sent home after I'm rehydrated- it's beyond me as to why I'm never admitted.
The Crohn's and UC are both classified as moderate to severe and I've been on Social Security since August 2010 due to the unceasing symptoms. Why would I never be admitted? My system needs a break and needs an IV drip for fluid! My specialist is a great guy and aware of my flare up, but just said to continue with 1 Humira shot every other week and 25 mg Methotrexate (pill form) every week. He doesn't believe in painkiller and doesn't prescribe any, and I've only ever had painkiller a few months throughout this whole 5 years, so I've learned to deal with the injustice.
I just want to be able to get out of bed (currently using a selfmade bedpan), drink without tormenting pain, and get some quality of life back. Thanks to anyone who read this fully. That is my story. Feedback and suggestions gladly appreciated
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