Hi,
I am a 37 year old who has had Crohn's for 10 years. My Crohn's story started in 1999 when my son was 18 months old. I began having diarrhea, cramping and generally very tired. When I lost 20 pounds I went to the doctor who said to me "you are loosing the baby weight you should be happy" and proceeded to tell me to take FIBER! A week later I was back in the office in agony, after going through a few tests they FINALLY sent me to a GI. That took almost 3 months. After lots of testing (upper GI, cat scans, xrays and so many blood draws I can't even remember) I went for a colonoscopy and woke up out of anesthesia to a hand written note that said "crohn's". The doctor never came in and I went home with my mom. By this point I had lost almost 50 pounds and was at a scary 110 pounds. My family all had to help me care for my toddler because getting out of bed was hard, much less keeping up with a very active little boy.
2 weeks later I went in for a follow up appointment and started on Prednisone and Asacol, and a dx change to UC. The doc said something about a biopsy finding changing it. I was so happy after reading online the different diseases. They left me on Prednisone for 7 months even though I was not really better and had no plans to take me off start a biologic or dmard.
I decided to try a new GI, who heard my DX and needed to do another colonoscopy. He found I did have crohn's not UC (the ulcers skip around) and also said nothing in a biopsy could say UC or Crohns.
He put me on Entocort, Asacol, Antibiotics, anti spasmadics and a host of other pills. I was still in a flare but the weight loss had stopped and with Prednisone I had gained quite a bit.
I decided to try a new GI after a few years of just feeling terrible. He put me on Immuran. I was so excited to have something that MIGHT fix me. A week later I was in the E.R. with pancreatitis. So we moved to Methetrexate and Remicade. MTX and I just don't work lots of side effects. Remicade didn't work and I had side effects. At that point there was nothing else to try. They put me on Vicodin and basically said good luck. I looked into clinical trials, but they scared me. I had to quit working at this point and applied for SSDI. (It was now 2005 and I was still sick!) I started getting severe back aches at this point and was diagnosed with Spinal Epidural Lipomytosis from all the steroids over the years.
I Had to have my gall bladder removed (I guess this is common in Crohn's patients) in 2009. The hospital sent a GI in to see me, even though I told them this had nothing to do with crohns. He started asking me all sorts of questions about meds. I was not on any Crohn's meds at the time considering none had worked and I was afraid of Humira after reading the Clinical Trial Paperwork. He starts asking about Asacol, I just rattled off all the meds I had been on at that point and why I was no longer on them ( I was in the hospital and doped up on some sort of IV pain meds) The GI actually said to me "well you are well versed in crohn's aren't you" implying I was lying about my history!!! He was a partner of one of my GI's!! His office had seen me in the hospital when I had Pancreantitis!! I was so offended. When you consider he would have just had to type my name into his OWN OFFICE FILES and would have seen all of it!! Including the fact I was in Pain Management!!!
I stayed in pain management until recently.My GI doc mentioned LDN as a possible treatment, BUT I could not be on opiates, so after almost 4 years of taking vicodin regularly I quit taking them on my own. I had some physical withdrawals but really it was not to terrible. (I never took more than I was supposed to and was very careful with them) We decided to try a very low dose of Methotrexate instead. I was on Medicare so script cost was very much in my mind. So, I was then dealing with active crohn's (which I did not feel most of the last 4 years) and my back pain was incredible. Methotrexate gave me severe side effects at a low dose. My GI got me over my fears of Humira (plus I did A LOT of reading on it). I started Humira and have felt quite a bit better as far as my guts are concerned. So now I was left with pain, I went to a spine doctor who did MRI's to say the SEL is cleared up and he thinks that it never caused the pain in the first place! (WHAT?) :ymad: So he starts me on PT, a tens unit and basically says its all related to crohn's and sent me to a rheumatologist.
So today I am on Humira for crohn's and my Rhumy doc thinks that I have SI joint inflammation and wants to play with the biologics more.... ( I have lots of side effects from Humira so he can't just increase the dosage) and has put me BACK on vicodin till he can figure out what to do with me!:confused2:
Crohn's has been at the forefront of my life for so many years now. I can't even imagine life without it. Now I am back to tracking bathrooms whenever I go anywhere and having days at a time where I am literally afraid to go out for the fear of not making it in time. My son is now 13 years old and Crohn's has shaped his life. He knows to ask before he invites friends over incase it is a bad day, he knows when I am in bed all day to just make himself dinner. (He usually will make me soup as well) My husband has been a god-send through this. He has had to put up with so much from this disease, I thank god he is still with me, I know he didn't sign up for this. After 5 years of appeals I was approved for Social Security. I miss my working self but see no other options for me right now. (but who knows maybe a miracle for me is around the corner!!)
Thanks for reading this book on my life with Crohn's. I am happy to be apart of this forum and hope my experiences can help someone else.
Nica
I am a 37 year old who has had Crohn's for 10 years. My Crohn's story started in 1999 when my son was 18 months old. I began having diarrhea, cramping and generally very tired. When I lost 20 pounds I went to the doctor who said to me "you are loosing the baby weight you should be happy" and proceeded to tell me to take FIBER! A week later I was back in the office in agony, after going through a few tests they FINALLY sent me to a GI. That took almost 3 months. After lots of testing (upper GI, cat scans, xrays and so many blood draws I can't even remember) I went for a colonoscopy and woke up out of anesthesia to a hand written note that said "crohn's". The doctor never came in and I went home with my mom. By this point I had lost almost 50 pounds and was at a scary 110 pounds. My family all had to help me care for my toddler because getting out of bed was hard, much less keeping up with a very active little boy.
2 weeks later I went in for a follow up appointment and started on Prednisone and Asacol, and a dx change to UC. The doc said something about a biopsy finding changing it. I was so happy after reading online the different diseases. They left me on Prednisone for 7 months even though I was not really better and had no plans to take me off start a biologic or dmard.
I decided to try a new GI, who heard my DX and needed to do another colonoscopy. He found I did have crohn's not UC (the ulcers skip around) and also said nothing in a biopsy could say UC or Crohns.
He put me on Entocort, Asacol, Antibiotics, anti spasmadics and a host of other pills. I was still in a flare but the weight loss had stopped and with Prednisone I had gained quite a bit.
I decided to try a new GI after a few years of just feeling terrible. He put me on Immuran. I was so excited to have something that MIGHT fix me. A week later I was in the E.R. with pancreatitis. So we moved to Methetrexate and Remicade. MTX and I just don't work lots of side effects. Remicade didn't work and I had side effects. At that point there was nothing else to try. They put me on Vicodin and basically said good luck. I looked into clinical trials, but they scared me. I had to quit working at this point and applied for SSDI. (It was now 2005 and I was still sick!) I started getting severe back aches at this point and was diagnosed with Spinal Epidural Lipomytosis from all the steroids over the years.
I Had to have my gall bladder removed (I guess this is common in Crohn's patients) in 2009. The hospital sent a GI in to see me, even though I told them this had nothing to do with crohns. He started asking me all sorts of questions about meds. I was not on any Crohn's meds at the time considering none had worked and I was afraid of Humira after reading the Clinical Trial Paperwork. He starts asking about Asacol, I just rattled off all the meds I had been on at that point and why I was no longer on them ( I was in the hospital and doped up on some sort of IV pain meds) The GI actually said to me "well you are well versed in crohn's aren't you" implying I was lying about my history!!! He was a partner of one of my GI's!! His office had seen me in the hospital when I had Pancreantitis!! I was so offended. When you consider he would have just had to type my name into his OWN OFFICE FILES and would have seen all of it!! Including the fact I was in Pain Management!!!
I stayed in pain management until recently.My GI doc mentioned LDN as a possible treatment, BUT I could not be on opiates, so after almost 4 years of taking vicodin regularly I quit taking them on my own. I had some physical withdrawals but really it was not to terrible. (I never took more than I was supposed to and was very careful with them) We decided to try a very low dose of Methotrexate instead. I was on Medicare so script cost was very much in my mind. So, I was then dealing with active crohn's (which I did not feel most of the last 4 years) and my back pain was incredible. Methotrexate gave me severe side effects at a low dose. My GI got me over my fears of Humira (plus I did A LOT of reading on it). I started Humira and have felt quite a bit better as far as my guts are concerned. So now I was left with pain, I went to a spine doctor who did MRI's to say the SEL is cleared up and he thinks that it never caused the pain in the first place! (WHAT?) :ymad: So he starts me on PT, a tens unit and basically says its all related to crohn's and sent me to a rheumatologist.
So today I am on Humira for crohn's and my Rhumy doc thinks that I have SI joint inflammation and wants to play with the biologics more.... ( I have lots of side effects from Humira so he can't just increase the dosage) and has put me BACK on vicodin till he can figure out what to do with me!:confused2:
Crohn's has been at the forefront of my life for so many years now. I can't even imagine life without it. Now I am back to tracking bathrooms whenever I go anywhere and having days at a time where I am literally afraid to go out for the fear of not making it in time. My son is now 13 years old and Crohn's has shaped his life. He knows to ask before he invites friends over incase it is a bad day, he knows when I am in bed all day to just make himself dinner. (He usually will make me soup as well) My husband has been a god-send through this. He has had to put up with so much from this disease, I thank god he is still with me, I know he didn't sign up for this. After 5 years of appeals I was approved for Social Security. I miss my working self but see no other options for me right now. (but who knows maybe a miracle for me is around the corner!!)
Thanks for reading this book on my life with Crohn's. I am happy to be apart of this forum and hope my experiences can help someone else.
Nica
