Help. Given up hope.
I have suffered for 2 and a half years with watery sometimes bloody diarrhoea. I have psoriasis and psoriatic arthritis (On Humira for 15 years now) plus a family history of Crohns. The GI has ruled out Crohns due to clear colonoscopy and biopsies back in November, although these were incomplete biopsies and have been told I may need another colonoscopy for completion. Precious history of fistula requiring 5 years and 6 procedures of corrective surgery. Diagnosed IBS 15+ years ago.
Doesn't seem to matter what I eat or don't eat, I have urgency and often wake at night needing to use the toilet quickly. I've cut out spicy foods and dairy, increased soluble fibre from oats, even tried the wallpaper paste type additive Silica gel 🙃
No idea if and when I might get another gastro appointment so I just feel left in limbo. I can't work, can't go out, can't eat anything without discomfort, have no energy and most upsetting, I can't be the active parent I want to be.
Any light anywhere please?
Hi
, What you're going through sounds so difficult, and our hearts go out to you. Please know you are not alone! I know it must feel hopeless to try so many different things to manage your condition and not feel better. It often takes folks many years to find things that work for them, so don't give up trying!
I am sure there are others in our community who can offer you some light, but I wanted to share a few articles with you that you may find helpful.
https://inflammatoryboweldisease.net/living/identify-manage-triggers
https://inflammatoryboweldisease.net/living/parenting-with-chronic-illness
https://inflammatoryboweldisease.net/living/lost-hope
https://inflammatoryboweldisease.net/living/crohns-treatment-hope
I hope you can get a gastro appointment soon. Don't delay making that appointment if you haven't already! Please keep us updated on your health!
Best, Jessica (Team Member)
Hi
. Your frustration is certainly understandable. I previously wrote you a note under your status update, but want to add a few things now that I see more of your story. On top of the excellent information from , I want to note that it is definitely possible for IBD to be missed on a colonoscopy. In fact, this article from our editorial team discusses just this topic: https://inflammatoryboweldisease.net/living/diagnosis-missed-colonoscopy. This is why the diagnostic process is often more involved. I want to share this article on the process, so you are prepared next time you see the doctor: https://inflammatoryboweldisease.net/diagnosis.
Finally, I want to note that many here have been where you are. For example, here is the bio for our patient leader Paul who struggled mightily with Crohn's, but now lives a full, happy life: https://inflammatoryboweldisease.net/community-advocates/paul-richman. I share this to show there is hope. As Jessica mentioned, please feel free to keep us posted and to ask additional questions - this community is here for you. Best, Richard (Team Member)
