Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

Finally diagnosed with crohns.


Mon, July 08, 2019 2:42 PM

I must admit 2019 has not been my year. My journey began the day after Christmas 2018. I began having abdominal pain and pressure just up and left of my belly button. This felt different than the "normal" belly pains that I had experienced. This didnt feel like just normal gas. This pain persisted strongly for a couple days and by all means I should have probably went to the er as most same people probably would have. I have a mentally challenged brother who I look after and I provide a home and guidance for. Hes my buddy but little did i know how much our roles would change and that I would be soon getting lots of help and support from him. My symptoms subsided somewhat but was never gone. Some days the pain was annoying other EXCRUCIATING. I made an appointment with my GP mid January and he didnt seem overly alarmed. My belly was hyperactive and extremely and embarrassingly noisy. He suspected it may just be gastritis and prescribed a spack. After 3 or 4 days I thought I may be feeling better but then I suddenly felt much worse dashing my Hope's of a quick easy solution. During this time I had discovered that by fasting for about 18 hours the pain would subsi6or even go away. Thus began the cycle that would eventually lead to a 90 lb. Weight loss. I was given a referral to a gi dr. For a colonoscopy and upper gi and the colonoscopy was normal and the upper showed some gerd issues and some inflammation of the uppermost segment of the small intestine. No smoking gun though. Then I had a ct scan showing inflammation and some dialation of the small intestine. There was initially some concern because some of the lymph nodes in that area eda was also swollen. They said it could be lymphoma or that it could be a result of the inflammation. I was referred to consult a surgeon who declined to do anything but who in turn referred me to another gi dr think inf that a camera endoscopy was the way to go. A week passes yet again and this gi dr hadn't even called to make an appointment. Diarrhea had become horrible and it was now late may and I was getting weak. I could barely climb the 3 steps to my house. I live in rural illinois 70 miles from st louis our nearest larger city. These rural appointments and limited hospital capabilities were slowly killing me. I asked my brother to drive me to barnes hospital in st louis. I wanted admitted and to get to the bottom of this for better or worse. J was there 10 nights and they tested everything imaginable. The gi team eventually told me they believe its crohn's disease but they couldn't quite give me the definitive diagnosis because they were not able to biopsy the portion of the ilieum where the mri and scans show narrowing and inflammation. On a positive note I had almost resigned myself to having cancer as i thought there was no way this pain could be this bad except cancer. They found no indication of cancer anywhere. They began treating me with 50 md prednisone with a 10 mg taper down each week. I felt like this helped a slight bit like lowering my sickness from a 10 when admitted to a 7 when discharged. I've been out about a month and at first I held my own at home but slowly started regressing which was devastating to me emotionally. I had been hurting for 6 months and wasn't getting better. Last week I had a follow up at st louis and like I suspected the dr thought the worsening was caused by the prednisone having tapered down to 10 mg at that point. He was finally able to give me the definitive diagnosis of Crohn's and he bounced my prednisolone back to 30 mg Nd with a diagnosis I am now awaiting insurance preapproval for remicade. N kot the drs first choice but he said the insurance usually chooses which treatment to begin with. The boos in predictions has me feeling slightly better again and hopefully I can begin this treatment this week or next. I am hopeful that I can tolerate the side effects and of course that it is effective. I will update as soon as I have mo

FPO Wworld
Joined Jul 8, 2019

Related Topics

Crohns Qs new hair loss a...
Author Image ghand17
Joined Oct 23, 2022

I am also newly diagnosed. I was put on Inflectra ....

read more

Joint pain
Author Image AbbyF
Joined Jun 29, 2022

Hello, I'm newly diagnosed with Crohn's an....

read more

Extreme Abdominal pain
Author Image JackieBosco
Joined Oct 3, 2022

Hello. I was diagnosed with Crohn’s about tw....

read more