Hi everyone, thank you for sticking with me this year. I know I’ve ive not been very active lately but there is a reason for that.
About 6 or so months ago, I started getting a stabbing pain near my defunct jpouch after eating dinner. It would suddenly come on but fade after a couple of minutes. Then is started happening more often and moving forward in my pelvis as though I was having period cramps. From there, it felt like it was moving up towards my stoma. This continued on and off for a few weeks until it was happening almost constantly. The pain got so bad that I was unable to stand for periods, and my hot water bottle was my constant companion. This last week it sort of came to a head and I’ve had to take a few days off work.
So what have I don’t to help? Well, first I contacted my IBD team. They were kind of stumped as to what might be causing my pain so referred me to my surgical consultant. Via his secretary, I was able to describe my pain and arrange a phone call with him (which’ll be tomorrow). In the mean time, he ordered an abdominal and pelvic PET CT scan, something I’ve not had before but is almost identical from the patient point of view as a regular CT scan. PET scans show how well organs and other body parts are working, not just what they look like (which is what a regular CT would show).
As well as that, my GI had requested a capsule endoscopy which involves me swallowing a capsule that contains tech that will send data (presumably images among other things) to a transmitter that I will wear for around 24hours. This should give him a better idea of what the inside of my gut looks like as the ileoscopy I had a few months ago didn’t get more than 15inches in before having to abort. (An ileoscopy is just what it sounds like: a scope of my small intestine via my stoma).
I have taken what’s called a “patency capsule” yesterday which is a “dummy” capsule that will devolve in my gut if I don’t pass it in 24hours. It’s purpose is to make sure the real capsule will pass safely through me and not cause an obstruction. I have an xray later today to check it’s progress and the real capsule will be next week.
What does all this mean? Well, I’m not sure, to be honest. I’m sort of in limbo right know as I don’t know what’s causing my pain, and my GI is not convinced I don’t have Crohns; he’s wondering if my initial diagnosis of ulcerative Colitis was infact incorrect (it might explain a few things…)
Now, obviously I don’t want there to be something wrong, but at least if there is, it means they can fix it. Not knowing what’s causing this pain is infuriating as it means there’s nothing to treat and I’m stuck as I am. I just want answers.
Thanks for reading. I hope you are all doing well and keeping safe.