This is a subject close to my heart and a very controversial one. There will be many people who are concerned with this subject but I feel it needs to be said.
I am a member of many IBD and stoma forums and the most overwhelming subject that keeps cropping up is patients being left to the “wait and see” approach. This to me is very dangerous as I also note that many patients’ bloods and observations are not indicative of the disease progression. These patients are being left in an unbearable position, in pain and suffering and for many this carries on for many months. It also means that if surgery is later than it should be, then the consequences of that can be major. There should not be anyone that is having life saving surgery for IBD ( there are some exceptions, like toxic mega colon that cannot be foreseen ). But I do know from experience that surgery could have been sooner with better outcomes.
I was one of those patients. Yes my consultant knew I had severe left sided disease, although it was constantly put down. It started as severe proctitis then gradually worked its way round to the left. I was feeling extremely ill, and my bloods were showing this at times. I was having temperature spikes, but because it wasn’t happening in clinic, I was disbelieved. I ended up with emergency surgery with no chance of reversal because my rectum was too severely diseased, to the point that I had rectal stump blow out, a major rare complication. I was also nutritionally poor before surgery.
These concerns are real and need addressing, the surgeons seem to have the right idea, ” don’t wait” . They are the ones that have to operate on people that could have been much better in health and now have many issues that could bring poorer outcomes. It will be the surgeons that have to work with what they have been given. I am sure the consultant GI’s are trying to do what they think is right for a chronic condition but I implore you to listen to the patient and take a leaf out of the surgeons’ book. Â It doesn’t mean you have failed ,it means you haven’t. I know that IBD is a complex and unpredictable disease with many forms, and very difficult to treat, but if treatment is not working anymore then enough is enough.
