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Crohn's Disease / Ulcerative Colitis Community
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Avatar universal

Question about Crohn's Disease

Okay I have been diagnosed with Crohn's disease after many grueling tests. Now after much prayer they are saying there is only a 70 to 80 percent chance that I even have Crohn's. I am tired of being sick and want something done and dont want to go through a bunch more tests. I have at least one thing of diarrhea a day sometimes as many as 17. I have extreme abdominal pain during what they call flare ups. My stomach hurts so bad that I get nauseated. I am tired of being sick and want something done. Nothing they have done for crohn's has helped completely take the signs and symptoms away but has helped to an extent. What should I do and what do you think?
7 Responses
572872 tn?1217220171
Oh it is no fun let me tell you.  The most important thing is to watch your diet.  I personally hate doctors never have found one I like.  Most of them just want to cut you open.  One of my doctors that I had a long time ago said (internal medicine doctor)  said you don't go under the knife for this until you would rather die.  I have had Crohns since I was 13 and 42 now.  2 times doctors almost had me talked into it and then years later I ask a different doctor and he said oh we don't do that anymore may of the patience that had those sugaries ended up with cancer.  So you take control of the situtation and stay on a diet that won't keep you in pain.
Avatar universal
Oh i know i hate it. i dont really eat a whole lot of anything so my diet really isnt my problem. I dont know what the problem is honestly. I just wish that something productive was being done. Thankfully I have found a doctor that I absolutely adore as a doctor. The first gastro doctor I went to told me there was no hope for me and that I was just going to have to live with the pain for the rest of my life. The doctor that I like took one look at me after listening to the symptoms and said I think its Crohn's disease and then after many tests he saw that it was Crohn's. I am 19 now and was diagnosed 17 days before my 19th birthday. But there are very few doctors out there that are like the one I have and I thank GOD for him. After a while though you get tired of looking for a doctor and that is why I am so glad I found him.
574423 tn?1258658571
my husband was diagnosed with crohns disease and ulcerative colitis about 7 years ago.  this stuff is no picnic, even living with someone who has it.  we've been through so many different meds, methods, natural, organic, etc.  the one thing that worked best for him was prednizone.  it made him gain weight, but it took a lot of the pain away.  don't eat too much fiber as it can irritate the intestines.  its a balancing act.  find the right diet, and meds, and hopefully it gets better.  good luck to you.
Avatar universal
Hello clns, did you have a positive reponse with steroids? I hate them and havnt used them in over 5 years but they always did make me feel a little better crohns wise but the side effects were horrible, did they do a colonoscopy ?if so what about a biopsy? that can usually confirm crohns or ulcerative colitis, I use to get all your symptoms but i also know people personally who have those symptoms because of food alergies, ever been tested for those? how is your weight? why dont you eat?  what meds are you on? sorry for all the ? but i cant anser your question without these answers , thank you  oneil420
Avatar universal
Just found out yesterday that they did a biopsy during one of the tests I had done and it came back as ileolitis so that confirms the whole crohns disease thing for me and pretty much for the doctor. I guess they are just trying to figure out the extent of the crohn's disease. I have had a positive response with steroids and that is now what my gastro dr is trying indefinitely but this certain steroid targets your terminal ileum area and is supposed to not have the same effects as a regular steroid. I have never had a colonoscopy done but have had a lot of the other tests. I have been tested for food allergies and those came back as negative. I went to an allergist to be tested. My weight fluctuates a little from other health problems I have which one of the side effects is gaining weight which is polycystic ovarian syndrome. I have lost about 20 pounds in the last 6 months or so. I have been on asacol, pentasa, and imuran however the imuran helped a little but made my red blood cell count drop too low so my doctor made me come off of it and said I cannot get back on it. So yesterday my doctor put me on the steroid entocort ec which is the steroid I was talking about earlier. I dont eat a whole lot I eat very little hopefully to make it to where nothing will bother me, but that doesnt work. Every person with crohn's disease or uc carries some degree of lactose intolerance whether its small or great. Thats okay about all the questions. I dont mind. I am use to having everyone ask me a lot of questions.
Avatar universal
Hi. I think my daughter may have Crohn's, but we are still in the process of being diagnosed. Nothing has come back positive yet except for an elevated sed rate. She has had ultrasounds, hida scan, EGD and I will be suggesting a colonoscopy at the next GI appointment. My question is how did you make it through school? She has yet to go to a full day of school. It is very frustrating for both of us. She is a Freshman this year and the summer was a total bust. Her illness has taken over her life. How do you keep that from happening? Any info would be great. By the way, how did you get diagnosed if you don't mind me asking? Thanks.
Avatar universal
Hey sorry it has taken so long for me to get back to you...I only got through school by the grace of the Almighty GOD...I was diagnosed first with blood tests then with an upper gi with a small bowel follow through...which by the way isnt fun but its worth it if you figure it out...If you are not careful it will take over your life and has mine for a long time and I am just learning how to take back control of my life in spite of the pain...I will be praying that she gets diagnosed quickly because the longer you dont know the worse it gets
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