• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

In need of help

P

purple4594

so I was recently diagnosed with crohns in my terminal ileum and ulcerative colitis. And my doctor prescribed me on prednisone which did nothing but have me gain weight until they put me on Imuran also. but after tapering off of the prednisone and being done with that medication my symptoms came back. I told them that the other medication wasn't helping with the symptoms and I don't know how to tell what foods irritate me or cause a flare up or how I even know exactly what a flare up means. they told me to go on a Prilosec but I don't understand what it will do for me . I am very confused and at only being 20 yrs. old this Is hard to understand what to do. I cry everyday cause im just looking for something natural to help with the pain and going to the bathroom at least 4-5 times a day. I work as a CNA and dealing with the stress is hard on my stomach also. I know I need to watch what I eat but what do I need to stay away from and how do I cope with the pain or manage it. im desperate and in need of help. someone please help me understand this disease and what to do to take care of myself before I have to be hospitalized. I want to be the happy girl I used to be again. :(
 
DJW

DJW

Forum Monitor
Hi and welcome to the forum. A crohns diagnosis is a lot to take in. I'm not up on all the new treatmens as I'm coming off a long remission. I'm sure someone will be along soon who has more info. Have you talked to the doctor about the pain? Sending you my support. Hope you feel better soon.
 
Jessy

Jessy

What are your symptoms right now? Keeping a food diary may help you to pinpoint foods that cause you distress. Many people tend to stick to a low residue diet when flaring - which is low fiber easy to digest foods such as white breads, bananas, pasta, eggs, etc. When I am not feeling well I stick with liquids for a while. You may also want to look into certain diets that are tailored to people with IBD, such as the Specific Carbohydrate Diet (SCD).

I would also keep open communication with your GI and let him know that your current medication is not working. There is a class of drugs called biologics (Remicade, Humira, Cimzia) that many people find very helpful. I have had success in the past with Humira and Remicade. Do as much research you can on Crohn's Disease and go to you GI with a list of questions/suggestions. Good luck!!
 
P

purple4594

Well just today i felt like i couldnt function with nausea and abdominal pain and i knew i needed to eat but im scared and when i domt eat the pain gets worse how do i know exactly how to tell if certain foods i eat irritate my stomach?
 
Jessy

Jessy

Sorry you are having trouble eating and having pain. Abdominal pain is by far my worst symptom of this disease. Do liquids hurt your stomach? I drink a nutritional drink called Orgain, it is similar to Ensure, but organic and without all the chemicals that are found in Ensure. I also make myself smoothies with homemade yogurt. This is how I get calories when I cannot eat solids (actually right now I am on TPN, but this is what I did prior to TPN). If you GI is not meeting your needs, you may need to look for another. I switched GIs when I was first getting symptoms because the first was not helping - - he was sure my symptoms were all due to the birth control pill and refused to test for anything else. As soon as I found my new (and current) GI, I was diagnosed with CD via colonoscopy and medicated appropriately.

I was initially diagnosed when I was 21 years old and had symptoms since I was 19. I learned rather quickly that I need to be my own best advocate and to do so I needed to learn as much about my disease as possible. As a young woman, I feel that doctors are quick to dismiss or downplay symptoms. You can ask your GI for pain relief, but GIs are often reluctant to prescribe pain medication. It's worth a try though. My GI will give me a low dose of Tramadol when needed, which I did fine helpful at times.

I am sorry you are having a hard time - it sounds like your medication needs tweaking, which will hopefully give you some relief. This disease is a huge pain, but it is manageable, it just takes time. I was lucky enough to have a good 3-4 years of full remission on Humira (and I have "severe Crohn's) and am hoping that my upcoming surgery buys me more time. So it is possible. Good luck!!
 
You must log in or register to reply here.
Top