Tag: pain

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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.

A week post surgery

I’ve had a bit of a set back. Yesterday, I woke up feeling very cold and shaky. My temperature was ~40°c and I was tahycardic, with heart rate over 130bpm!

The nurses and doctors were quite concerned and I was put on a very strong IV antibiotic, which helped a lot. They also put me on IV fluids as I was feeling sick and wasn’t drinking much. They did blood culture checks, both peripherally (from a vein) as well as from my PICC line because there was a chance the line was infected. They also did a urine dip from my cathatar.

While they were waiting for those results, they took me for a CT scan to check if I had any liquid pooling in my pelvis. Unfortunately, I have a pooling near my stoma and they had to put in a drain last night. I believe my PICC line is fine but they’re not using it at the moment.

I’m very sore and achy, and not as mobile as I was a few days ago. I feel like I’ve taken a few steps back.

Bad-ish news

I had another CT scan today and it showed two things; 1) my bladder had a litre of liquid in it that I didn’t feel, resulting in me having a cathatar inserted. It immediately drained about half so it’s clear I need it.

The second thing it showed was a hole in my jpouch where intestinal waste has leaked into my abdominal cavity. The drain that was placed into my pouch yesterday has now gone through that hole and is draining as much as possible but itse still quite painful. The doctors have put me onto their surgical list for tomorrow to remove the pouch and give me a permanent stoma.

This is quite a bit to process and I haven’t really talked to anyone about it much. I will do my best to absorb this overnight but I don’t think I’m going to sleep too well tonight.

In hospital… again.

I was admitted via a&e last night with severe abdominal cramps and vomiting. They gave me morphine and have since put an NG tube up my nose and started me on IV fluids. They’ve done an xray and said it looks like a bowel obstruction. They’re observing me for now and keeping me on painkillers. I don’t know what the plan is so I guess I’ll just have to wait and see. There was talk of a CT scan or ultrasound but that was hours ago and I doubt it’ll get done today.

I’m so tired. I’m going to try and nap again before they decide to do anything else.

Feeling pretty crap at the moment

I’ve been on modulen for about two months now and, since my last scope showed the ulcers had cleared up, I figured I would try some real food.

This was a mistake.

Now, I’ve had pizza before (both while on the modulen and not) so I didn’t see any harm on trying a take away pizza. Turns out, my gut disagrees, and now I have a partial blockage.

I haven’t had much modulen since Friday night. Instead, I’ve been drinking a lot of squash and putting my hot water bottle too good use over the weekend. This has worked with blockages before so I’m hoping it will work this time too.

Quick pre-surgery update

The last few days I’ve had a pain just above and/or to the left of my stoma. It feels like a partial blockage but it’s not moving and my stoma is still working. I find laying down makes the pain a worse but my hot water bottle helps ease it enough to sleep. I’m avoiding food that can cause blockages or are hard to digest and drinking plenty so hopefully it’ll pass.

I spoke to my stoma nurse yesterday and she confirmed that blood from a new stoma is common, but to speak to my GP is the blood is coming from inside my stoma. As the blood seems to have stopped for now, I won’t be calling my GP. However, if it happens again, I will.

The skin directly underneath my stoma was red and sore when I changed my bag yesterday but the barrier cream seems to soothe it a little bit. The annoying thing is, when I saw the nurses on Thursday, my stoma and skin were both fine. I’ve taken a picture of what the skin was like yesterday so when I see them next, I can show them. I’m hoping the skin clears up on its own and that the blood was a one off.

As for the cramps, it seems my eating mini pizzas causes them to get worse. I’m not sure why they do but I think it’s best I avoid pizza for a while. I’ve been using a hot water bottle at night to relax my muscles so I can sleep, but I still need to take painkiller. I’m still taking paracetamol regularly but I’m also taking codeine and buscopan (IBS relief) on occasion.

Day 7

The NG tube seems to have done the trick as my cramps are almost completely gone. I did have to ask them to remove it today though because it was making me gag. The new cannula is doing well, I’m on IV fluids at the moment because I wasn’t drinking yesterday. I’m on free fluids now but they recommended to see how I go and to play it by ear, so to speak. I’m quite tired still so I’m going to try and catnap this afternoon.

Day 6 – another update

I’ve been throwing up today and been in constant pain with my stomach cramps which only oralmorph seems to help take the edge off of.

The surgical doctor thinks I’m a bit distended and has ordered a tummy xray. He also wants to get an NG tube inserted. I’ve never had an NG tube and, other than what I’ve seen of others having then fitted, I don’t know what to expect. To be honest, I don’t really care so long as it helps.