Living with Chronic Illness: My Story

Hi Amiee thank you for your response. I’m glad to hear that you are doing better on entivyo! And it’s good to know it takes 6 to 8 months to actually start working. I mean it would be so much better if it started working faster lol, but that gives me hope that the stalara will still take some more time. I’m also going to be starting pelvic floor physically therapy soon. I just got my referral approved to see a specialist. I do have really bad anxiety from all my conditions. I actually started my disability claim back in 2010. I started it by saying I was disabled from interstitial cystitis and pelvic floor pain. I also put down I had unknown stomach intestines issues even 15 years ago. I just wasn’t properly diagnosed until late 2021 because my doctor finally did a smart pill test on me. I also smoke marijuana for my pain. I use it daily like 2 times a day. Also trying to get into a nutritionist, but I’m not sure how that’s going to go because I can tolerate different foods on different days. There’s definitely food and drinks I know to stay away from. But eating right is so hard for me. Especially because I am underweight. I’m glad to hear that you have your husband to help you so you don’t have to work, but I also know it’s a full time job taking care of a 2 year old. I’m very lucky to have help from my parents. My daughter is 7 and she’s very active like most 7 year olds. I feel so bad that I can’t do all the things she wants to do, but I also have excepted my situation for now. I’m still determined that I will get better soon. That things will at least improve. I have my hearing for disability next month. I have already been denied twice. Well it’s nice hearing from someone else who understands what I’m going through! I pray you continue to have more good days than bad 🙏 And you can write to me anytime.

Hi John. I’m Amiee. I have Crohn’s as well and I also have pelvic floor dysfunction. I am working on getting in with a pelvic floor specialist to help me some more with that. I have been on entivyo for almost a year now. It didn’t start helping until I’d say 6-8 months. But I also added in smoking marijuana nightly until it got better. Than I started just smoking a couple times a week. I have more good days than bad now. It’s still a constant battle tho to keep things calm. I also don’t work but I’m a stay at home mom to a 2 year old and my husband is able to support us all on his income. I have heard it’s difficult to get disability for Crohn’s. I know several people who got it for anxiety from their Crohn’s tho. It was debilitating enough they couldn’t leave the house to work and that is how they got it. Hope this helps. You aren’t alone.