I am 24 years old as of Thursday and today Friday I found out I have Crohn's disease. My story began in January when I had horrible stomach pains and I was running to the bathroom all the time. I finally had a doctor appt scheduled with my Primary Care who made me get Xrays done, blood work, and a CT scan on January 13th, 2015. I got an urgent phone call from my physician telling me to get to the ER I had an appendicitis that it needed to be removed ASAP. I went to the hospital, more blood work happened then I was admitted. I did not see a doctor until the next day on January 14th, 2015 to which I was pressed on and boom I was in surgery before noon. I was released the next day, with IBU profen 800. (I have been prescribed this medication since I was 16 for cramps, migraines, and body aches) Note- I am allergic to all pain medication except morphine, due to a severe codeine allergy. The healing process came within a couple of days and I wasn't eating, still running to the bathroom, and I became ill- I couldn't look at a computer screen without go cross eyed, I was throwing up depending on certain smells, and I was so weak I could hardly get up. When I had my follow up appt with my surgeon from my appendectomy I was released to a gastroenterologist due to bowel issues with bloody stool, and I was going to the bathroom over 15x a day. I had my appt with the gastro doc and I was then scheduled for a colonoscopy on February 4th, 2015. That SUPREP stuff the night before made me sick, and lord help me if I didn't make it to the bathroom in time... Colonoscopy was performed, and the doc told my daddy that I most likely have ulcerative colitis- but they had biopsy cultures they were sending off for labs and to come back on February 13th for correct diagnoses. I went in today to find out I have Crohn's disease, I have chronic Crohn's as I am still in flared stage and to my dismay the doctor said I have had this disease for 6 months + without knowing. I was told for now they know I have Crohn's in my colon only, however I am having the PILL CAM done in April to see if it's in my intestines as well. I feel so alone within myself- my thoughts and what's to come. I worry the disease is already in my intestines and I have to wait another 2 months to find out. I have lost a total of 17 lbs since January, and since my yearly physical in October 2014 I have lost a total of 23 lbs. I was so healthy last year for 2014, I was only sick 2x then boom January 2015 hit and it's been a downhill spiral ever since. I want to know any secrets for living day to day with this disease, secrets on how to get out of a flare faster, etc. I am currently on Lialda per doctor's request since my colonoscopy, it seems to help with not going to the bathroom as often but that's all I'm seeing result wise.
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Properly diagnosed today
- Thread starter free_spirit24
- Start date
nogutsnoglory
Moderator
Glad you have a proper diagnosis. I agree with you that its frustrating to wait but perhaps the doctor wants to see the kind of healing you have on the drug. You could always get another opinion if you want.
I am so sorry for you. This is a shock and you are at the beginning of a long journey of discovery and hopefully healing. You have to give the drugs some time to work, usually months rather than weeks, it will not resolve overnight. And I'm sure you are aware it can take a long time to find the most effective treatment (but Lialda might work for you so don't panic yet). It is difficult to be patient when you feel so awful but hang on in there.
One thing, if you are not sure of anything always ask questions and stay strong with your instincts. You usually have to fight your corner.
My opinion is also to keep a food diary or be aware of what you are eating. Many doctors say that diet is not relevant but I do not believe that. You will see on this forum, what is good for one person is not good for the next. People tend to avoid or prefer certain foods during a flare.
I hope you have people around you who can support you. Good luck.
One thing, if you are not sure of anything always ask questions and stay strong with your instincts. You usually have to fight your corner.
My opinion is also to keep a food diary or be aware of what you are eating. Many doctors say that diet is not relevant but I do not believe that. You will see on this forum, what is good for one person is not good for the next. People tend to avoid or prefer certain foods during a flare.
I hope you have people around you who can support you. Good luck.
I'm just feeling all sorts of confused with this situation.. I got a phone call from my gastro doctor today saying I'm inflammed still and to continue with my Lialda until my Pill Cam.. Should I be worried? I mean I just got diagnosed on 2/13, but I was told I've had Crohns for 6 months to a year... I feel like I'm being told 1 thing after the other, and I'm trying to find comfort within this forum to which it's helping but on my doc's end- not so much.
I do have my parents, boyfriend, and best friend looking out for me and checking on me daily- so support system is there, except when they don't fully understand when I'm explaining things.. but I don't get mad or anything, how are they supposed to understand when they don't have it or know much about it.
Food diary, I did start that but have failed to keep up due to my work schedule. I have noticed anything leafy (lettuce, romaine, cabbage) I cannot have at all!
I do have my parents, boyfriend, and best friend looking out for me and checking on me daily- so support system is there, except when they don't fully understand when I'm explaining things.. but I don't get mad or anything, how are they supposed to understand when they don't have it or know much about it.
Food diary, I did start that but have failed to keep up due to my work schedule. I have noticed anything leafy (lettuce, romaine, cabbage) I cannot have at all!
Dear free spirit24
Don't worry about how long you have had Crohns. For many (most?) people the diagnosis comes years after the symptoms start. You can compare it to having chronic heart disease or diabetes, you can have those diseases a long time before you find out something is wrong.
Now your problems have a name, and that means it will be easier to get the help you need on all fronts.
There is no overnight cure, and you might need to make lifestyle changes to help too. Everyone is different, but I'm sure you will find some useful tips on this forum.
Don't worry about how long you have had Crohns. For many (most?) people the diagnosis comes years after the symptoms start. You can compare it to having chronic heart disease or diabetes, you can have those diseases a long time before you find out something is wrong.
Now your problems have a name, and that means it will be easier to get the help you need on all fronts.
There is no overnight cure, and you might need to make lifestyle changes to help too. Everyone is different, but I'm sure you will find some useful tips on this forum.