My Crohn’s & New IDB Symptoms
I’ve had Crohn’s since 2007. I was hospitalized for the first time this May for a week.
Since then I started Entyvio infusions (years ago I was on Humira for 7 years & taken off b/c of developing nerve issues) and I’ve been on steroids (and dicyclomine which has never really helped.
Since May my gastroenterologist has had to up my steroids dose. Every time I do a walk down and get to 10 mg the cramps get bad and worsen and I end up having to go back up to 20mg. My doctor said HE’s Concerned b/c the steroids are not helping and referred me to an IBD doctor (still waiting to hear from them for an appointment). What concerns me is in the 16 years I’ve had Crohn’s (was in remission for 5 years) if I used steroids it knocked it out, but not this time after 7 try’s. Mostly it feels extremely different (feels like it’s in my colon or bowels). Has ANYONE Experienced the same?
Hi
, thank you so much for sharing your story. I am so sorry that you have been going through this. The ups and downs of this illness are so hard, and it's particularly upsetting when something that worked before doesn't work now. (I experienced this with Mesalamine enemas.) I have also had some issues getting off steroids, especially around the 20 mg mark. I have heard others have had the same issue. In my case, I ended up needing to chance biologics because of this. I also used rectal steroids, which helped me a lot more.
I hope that you are able to get an appointment soon. I do feel like the IBD docs are sometimes more well-versed in things, so they can really give you a clear direction of where to go. In the meantime, is anything helping you? -Eshani (IBD Team Member)Omg this is me 😭😭😭 very bad in the last few days yesterday was breaking ponit had to ring 24hr nurse and my husband to come home from work very bad taughts I will end a mental hospital 😢😫
Oh
, my heart goes out to you. I can hear how bad it's been these last few days and how difficult you're feeling. Was the 24hr nurse line able to help and provide the support you needed? What did they recommend? Living with inflammatory bowel disease is such a challenge, not only physically but mentally and emotionally. You're definitely not alone. This community is here for you! -- Warmly, Christine (Team Member)
Hi Christine omg 24 nurse are amazing 1 only ring them when im at my lowest i would just love one full week Of normality but hard when the health System is fucked up and don't listen like do they think were making it up sent a lovely email to ibs team and only took 2 hrs to response then a phone call 🤔 say she got the shook of her life.....after me but if she'd listened 4 weeks ago ....problem is you have to have a melt down before they actually listen 😔
oh I'm so glad the 24 nurses are so amazing, and yes, it is incredibly frustrating to have to melt down before the healthcare providers in the office actually listen. I'm so sorry you've had such a hard and frustrating time of it all right now. I really hope that you can get some relief soon! Sending you gentle hugs. -- Warmly, Christine (Team Member)
I'm so bad to day and I was on holidays in August for a week couldn't sit in the sun was to hot as I am Anemic so only get burned but this time I was so dark I actually couldn't believe it my husband sayed on the flight back yur eyes are a bit yellow 🤔 n my eyes are really dark blue I have light blue eyes so was a bit worried wen I got home the Friday I felt sick again and that's wen it all kicked of no sleep AE Tuesday sent home AE Thursday sent home Friday finely they kept me and done noting only a ray I can't cope anymore can't drive n also can't walk and also I have fatty liver so I say that was how I got a lovely colour my live is so fuked up sorry for swear my bones are crackling and my head is going to pop
Hi
. Your frustration is certainly understandable. Just want to check in and see how you are doing. Have you been able to get any answers and how are you feeling? Hoping you are feeling better. Please know that this community is here for you. Richard (Team Member)
