A patient's perspective of IBD pain 

I also have IBD, or ulcerative colitis, and I'm currently watching this curled in a ball feeling nauseous and in pain with no idea how to manage it.... Well done on this lady speaking out on the subject 👏👏

Hi Lucy That was a very insightful talk. The trauma of living with IBD is real and you are right the anxiety that we have is based on reality so much more difficult to tackle. I have had a couple of years with almost no symptoms while on vedolizumab but now symptoms have come back and the anxiety has increased again

This is so refreshing to hear, just knowing what is happening in your body is relief, but at the same time it’s so scary because you never know when it’s going to happen Everything she says makes sense. A lot of people want to say why are you taking pain medication? Because they don’t see you on the toilet every day, the pain is inside in the form of inflammation I have been told I have Sjogren’s disease, I have been told I’ve had severe food poisoning, all kinds of false diagnosis Now I’m sitting in the hospital after a week, after I could not move from the bathroom for two days even to call the paramedics ... with no answers from them, but I know exactly what’s going on, I relate to all of these video

This helped me a lot, thank you 🙇‍♂️

I truly believe I might be suffering the same thing this story feels like my own

God bless her

Unbelievably this is exactly what has happened to me; went to uni at 19, I studied adult nursing, half way through had terrible symptoms of what was then undiagnosed Crohn’s disease. Two years later I got a diagnosis but by then it had developed into severe acute. I also developed shingles too! I think this was connected to taking anti tnf therapy for 10 years. I’ve never been offered pain relief as an out patient either. Maybe I need some further CBT, as I’m too anxious to adhere and make plans due to symptoms. But this video has left with some inspiration. Especially the part about revisiting your goals, hopes and dreams. The ones you had before chronic disease. Thank u.

My pain has been unbearable! I'm terrified!! Just diagnosed with UC yesterday. I recognized symptoms 3 weeks ago. Hospitol 3 times, EMS about 5. I learn more with each onslaught. So strange- out of nowhere my ears start ringing, my heart starts racing, BP shoots up to 200+/120, then my stomach cramps to unbearable pain. Pain so intense I scream. Then, half hour later it subsides. This has happened times. Anyone ever experience this?

God bless you

My daughter finally got diagnosed after two years of tests and dismissals. Her third attempt at a colonoscopy finally happens and confirmed crohns. The whole process has been one trauma after another. She’s only 16 and being given his many meds with ridiculous side effects that the drs dismiss are not to do with the meds. They say they’re there but when you ring up in urgency it’s two days later and then dismissed. She’s in constant pain currently bed bound as her joints hurt so much. No support. I’m exhausted with it all and I’m not the one with crohns. She constantly tells me I can’t live like this! How am I supposed to give her hope in this situation??

what you need the most is doctors that had the same problem as y ..soo they will understandeble

agree with everything

What keeps me from IBpain is taking the fiber product citrucel every day.

Having Crohm's myself since I was ten (7 years ago) I know this all too well. Though I have a higeer percentage of remission,I do ocassionally experience gut pain and cramping which indeed canbe intense. Mostly it is frequent bouts of diarrhoea (which has bben inclusive of very wmbarrassing public and private bowel accidents. I only recently joind CCUK though due to this pandemic of COVID have not been able to meet other people in our situation, however as I am across the Pond, when this pandemic finally subsides, I am planning to return back to the UK proper as soon as possible.

Cannabis is now available for IBD patients in the UK who have pain.

basically me i lost my life from my 22 untill 27 now

Healthcare professionals rarely think of diet to help IBD either. They like to give out the prescriptions but not much else.

I’ve basically lost hope, pain from colitis is all consuming.