Tag: ileoscopy

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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 is for Ileoscopy

(Yes, I know I’m skipping some letters.)

Also, TMI warning! I will be going into details here.

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An ileoscopy is a scope – a long thing tube with a light and camera on the end – of the ilium (small intestine) via the stoma. It’s different from a colonoscopy where the scope is inserted via the rectum.

I’d never had this type of scope before last week but now I have experienced this wonderful, slightly less embarrassing way of inspecting my gut.

My GI referred me to have one when my calprotectin came back at 4200ish (significantly higher than the normal range of below 50), and all other checks – infection, sodium, etc – had come back as within acceptable range.

I wasn’t given any prep for this scope. I was also told I didn’t need to fast. Knowing how high my output has been recently, I decided to have an early dinner the night before to ensure the least among of mess possible.

Once I was booked in, I was asked to change into a gown, and given the oh-so-fashionable “dignity shorts” (a pair of blue, elasticated shorts with a butt-flap). It wasn’t long before I was taken into the examination room and told to lay on my back. They placed an absorption pad with a hole cut out over my belly and the doctor made a small hole in the window of my bag to access my stoma. He first used a gloved finger to assess the entrance (exit?) of my stoma and which was my gut went from there before inserting the scope (which is apparently smaller than the ones used for colonoscopies..?) I didn’t ask for sedation but had been cannulated anyway, just in case. It was ok at first but got uncomfortable the further in the scope went.

I watched the screen to try and distract myself from the feeling of having something moving through my intestines, and thought I saw where my gut looped but they made no comment on that.

At one point, I thought we’d hit a blockage because it looked like the walls of my gut had closed ahead of the scope, but the doctor pushed on and was able to pass through without issue. It wasn’t long after that he stopped and began to slowly pull the scope back out.

Afterwards, he told me the 15-20cm of gut he saw (and photographed) looked pretty normal, so he wasn’t worried.

As great as it is to know there’s nothing physically wrong with my gut, it also means I am back to square one. We still don’t know what’s causing my inflammation markers to spike, and I’m still exhausted. There’s nothing they can see to treat so there’s nothing my GI team can do.

The only other thing that could be causing my fatigue is my vitamin d levels which are slightly below normal. I now need to go back to my GP to review my  vitamin d & calcium supplement.

And round and round I go again.