PET CT, capsule endoscopy, what next?

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.

I’ve got my MRI next week! I sort of know what to expect but does anyone have any tips/advice? They sent a leaflet with the appointment letter explaining I can’t eat before and I’ll need to drink “pineapple juice” when I get there. They may also have to pump dye in too but they struggled to get a cannula in me before my CT scan so I really hope they won’t have to do that this time.

Also, I may know why my Pill has stopped working. I spoke to my doctor this morning about it and she said it could be to do with my liver; that’s where a lot of these things would be absorbed so if it’s not working properly then medications might not work properly. It does make sense; my symptoms started shortly after I noticed my pills not working. The doctor has changed the type of Pill I’m on so hopefully that’ll do the trick.

Liver update

I saw my surgeon again this morning. He wants to postpone any plans for pouch surgery until after I have seen the liver specialist in January. He’s ordered an MRI scan for after that appointment and then I’ll see my surgeon again in March. I’m not overly happy about having to wait even longer but I’d rather get things sorted with my liver to reduce possible complications during surgery.

The CT scan showed nothing cancerous but it’s possible I have a form of liver disease thats linked to Ulcerative Colitis. I don’t remember exactly what he called it but, according to Google, it might be Primary Sclerosing Cholangitis (PSC), but I’m not sure.

I had my CT scan this morning. It took four tries to get a cannula in (my veins were not having any of it), and the dye they pumped into me was a little painful at first (because they had to use a tiny vein near my wrist/thumb), but it was over pretty quickly. I’m expecting result within the next few weeks.

For anyone going for their first CT scan, just be aware (because you nurse might not be as kind as mine was to warn you) once they start pumping the dye in, it can feel like you are wetting yourself. You’re not, it;s just the dye. It’s feels very weird. Also, my tongue went slightly numb for a bit. Has anyone ever experienced anything weird like that during a CT scan? Or any other type of scan?