Alright, im new to forums but it seemed like a good idea to join this one because i could really use some support, especially from people who have the same disease as me. Im just gonna go ahead and tell my story and hope someone has tips, tricks, pointers, suggestions. Ill probably be posting often because i have so much to ask and i now have the chance to talk with people who can relate, so here it goes. I was diagnosed with Crohns disease when i was 18, im 19 years old as of september 13th. For as long as i can remember, (about 5 years old) i never really had a solid stool but i never thought anything of it because it really didnt affect me except for the fact i was in the bathroom all the time. I can remember strange painful feelings i had before i had to go to the bathroom. Sometimes i didnt even have to go but it felt like it. My father was always running to the bathroom and he always says that some foods make him go more than others and some things he just cant eat.
So i figured i was like him. About a year and a half ago is when i noticed something was seriously wrong. I was having intestinal pain like ive never had before, to the point where i was on the floor curled up. I had no idea what was happening. I went to the doctor and i told them what i was experiencing and they prescribed me some type of pill that was supposed to hold your stool together. That did absolutely nothing, i still felt the same way. I had an MRI done, i did the whole process but they needed a better look. So i saw a gastroenterologist and he told me i may be allergic to wheat. (Ciliac Disease) I went a week with no wheat and still no change. Then i went in for my first colonoscopy. They went in and took a biopsy of my intestine, and came to the conclusion i had crohns. I had no idea what they were talking about, what it was, why it was happening to me. I saw a nutritionist, and he basically sat me down and said, ok this is what you should eat and this is what should stay away from. I almost cryed while he was telling me this, i dont think i even listened to half of what he said because i couldnt beleive what i was being told and what was happening. My life changed an enormous amount after this, i was prescribed pentasa 500mg 2 pills 4 times a day.
First thing i want to say, i dont know if anyone was successful with the drug but it seemed like a huge joke to me and it seemed to work when it wanted to almost. I had some days where i felt better than others, i would sometimes have normal bowel movements and sometimes none at all for atleast 3 days. After months of taking the drug i sat my doctor down and told im this stuff isnt working and im not getting better we need to do something. I had another colonoscopy to check up on the crohns and they told me my intestine was inflamed. I was put on Humira. After the initial dose i noticed a changed the next day. Almost like i was revived. i Had energy, i didnt feel physically drained, normal bowel movements. and then i missed a dose because i misunderstood how often it should be taken. Then it got to the point where i couldnt find enough fat to inject the medication into. After a couple failed attempts i went back to the doctor and told him what happened and im now being switched to remicade.
The infusion is next week and im anxious to start because i have been feeling horrible to the point where i cant go to work. To get to the point, im curious to know what other people with a similar sittuation does to gain remission or control their symptoms. Its a very painful, stressful thing to deal with im sure we can all agree when you dont know what your doing. I am a lot more educated now then i was when i first started, im just worried that because ive had it for so long that im doing serious damage to my body. When im in pain i usually smoke weed, not to start any controversy over marijuana, im not interested in anyones negative views on it.
It really helps me relax and fall asleep at night when its clearly bothering me. Even when i have no apatite i smoke just so i can gain a craving for food and maintain a healthy body weight. Yes, the munchies. I would love to hear what other have to say ive never spoke with anyone who has crohns so anything you have to say would be great. Thank you
So i figured i was like him. About a year and a half ago is when i noticed something was seriously wrong. I was having intestinal pain like ive never had before, to the point where i was on the floor curled up. I had no idea what was happening. I went to the doctor and i told them what i was experiencing and they prescribed me some type of pill that was supposed to hold your stool together. That did absolutely nothing, i still felt the same way. I had an MRI done, i did the whole process but they needed a better look. So i saw a gastroenterologist and he told me i may be allergic to wheat. (Ciliac Disease) I went a week with no wheat and still no change. Then i went in for my first colonoscopy. They went in and took a biopsy of my intestine, and came to the conclusion i had crohns. I had no idea what they were talking about, what it was, why it was happening to me. I saw a nutritionist, and he basically sat me down and said, ok this is what you should eat and this is what should stay away from. I almost cryed while he was telling me this, i dont think i even listened to half of what he said because i couldnt beleive what i was being told and what was happening. My life changed an enormous amount after this, i was prescribed pentasa 500mg 2 pills 4 times a day.
First thing i want to say, i dont know if anyone was successful with the drug but it seemed like a huge joke to me and it seemed to work when it wanted to almost. I had some days where i felt better than others, i would sometimes have normal bowel movements and sometimes none at all for atleast 3 days. After months of taking the drug i sat my doctor down and told im this stuff isnt working and im not getting better we need to do something. I had another colonoscopy to check up on the crohns and they told me my intestine was inflamed. I was put on Humira. After the initial dose i noticed a changed the next day. Almost like i was revived. i Had energy, i didnt feel physically drained, normal bowel movements. and then i missed a dose because i misunderstood how often it should be taken. Then it got to the point where i couldnt find enough fat to inject the medication into. After a couple failed attempts i went back to the doctor and told him what happened and im now being switched to remicade.
The infusion is next week and im anxious to start because i have been feeling horrible to the point where i cant go to work. To get to the point, im curious to know what other people with a similar sittuation does to gain remission or control their symptoms. Its a very painful, stressful thing to deal with im sure we can all agree when you dont know what your doing. I am a lot more educated now then i was when i first started, im just worried that because ive had it for so long that im doing serious damage to my body. When im in pain i usually smoke weed, not to start any controversy over marijuana, im not interested in anyones negative views on it.
It really helps me relax and fall asleep at night when its clearly bothering me. Even when i have no apatite i smoke just so i can gain a craving for food and maintain a healthy body weight. Yes, the munchies. I would love to hear what other have to say ive never spoke with anyone who has crohns so anything you have to say would be great. Thank you
