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 of eating

With the result of my latest scope being that all the ulcers are gone and my gut looks fine, I decided to reduce my modulen to 300g (from 400g) daily and make up the remaining 500~ calories with real food. For the last week, I have been eating small meals of (low residue/low fibre) solid food in the evening. I’ve also had a few small things at lunchtime but not every day. I haven’t had any issues from any of my food but I am aware I need to be mindful of the amount of food I eat at once because I’m quite sure my stomach has shrunk a bit.

I’m seeing my dietitian in a couple of weeks and I’m hoping that she’ll take me off the modulen completely. I’m also seeing another GI (not my usual) at the same time. This GI specialises in Crohn’s so I’m not sure why I’m seeing him as all my results have come back negative for that. My guess is that he might have a better idea of what might have caused the ulcers? I honestly don’t know but I’ll update after I’ve spoken to him.

Another update

I’m going to home today! I’ve got two weeks of Modulen, to be assessed after that and potentially continue for a further four weeks, when I’ll have another flexi sigmoidoscopy to see if the ulcers have gone from my small intestine.

They still don’t know if it is Crohn’s or not but my GI is about 90% sure it’s not due to how suddenly it came on and how quickly I reacted to treatment. He said it’s “more likely to come back as inflammation of the small bowel”.

My dietitian said that if it comes back as not Crohn’s, then I can move onto Fortisip drinks instead. The liquid diet will be gentle on my gut as it heals while still giving me the daily nutrients I need.

Apparently, UK GPs don’t like non-Crohn’s patients being put onto Modulen because it is so expensive. That’s why she’s given me two weeks worth from the hospital so that they don’t need to involve my GP yet. Fortisip is cheaper and not specifically targeted at Crohn’s patients, so my GP shouldn’t mind doing a prescription for those if needed.

Hospital update

I spoke to both my GI and surgeon yesterday and my GI again today; they’re still not sure what this is. My stool test came back negative for infection which has left them a bit baffled as to why I’m responding to the IV antibiotics. They suspect it could be Crohn’s but they won’t know until my biopsy results are back.

So, the plan for now is to stop the antibiotics and observe while starting me on modulen tomorrow. If, like me, you have never heard of it, modulen is a nutrition replacement drink that comes in powder form. It’s used to treat children with Crohn’s but they have started giving it to adults more as well. It’s apparently good for small bowel inflammation and most people use it for a few months to give their bowel a rest.

Currently, I am on Fortisip drinks for the rest of today but I don’t know if I’ll have anything else. I had cheesey potato and leek soup earlier and ice cream but I have a feeling I won’t get that again this evening.

Hopefully, I’ll fine out more tomorrow.


I’ve been trying different foods recently. Not foods that I’ve never tried but foods that I haven’t eaten since having my stoma because I was advised against doing so for a while. Given it’s been nine months tomorrow since I had my surgery, I thought it was about time I started introducing more foods so the things I’ve found I can eat (but was advised not to) include beansprouts, soft carrots, green cabbage and sesame seeds. Bear in mind these are all in small amounts and I am no way saying that all ostomates will be ok with these foods. My point is that it’s ok to test what your body (and your stoma/s) can handle. Has anyone else found that they can eat something they were told not to? I’m actually really interested to know what other ostomates/IBD/IBS sufferers have been able to digest despite being to told to avoid it.

I survived my first Christmas as an ostomate!

(minor) TMI Warning!

I had some concerns about Christmas this year, all related to food and my bag. I know my family likes to make loads of food (enough to still have leftovers for at least two weeks) and I know it’s mostly meat and vegetables. Meat I’m fine with but I have had some issues with reintroducing vegetables to my diet. I’ve found, so far, that well-cooked carrots are ok in small doses and potatoes are ok when mashed or roasted. Most other veg I’ve not been brave enough to try just yet but I decided to give green cabbage a go today. It seemed to go through fine but, even though I took a loperomide before eating, my output was alot heavier this evening, so I’m making sure to drink plenty so as to avoid a blow out overnight.

I hope you’ve all had a good and safe winter holiday. And in case I don’t post before, happy new year.

I had my MRI scan yesterday but I probably won’t get the results for a while though. It took about thirty minutes and apart from it being a little close in the machine, I found it wasn’t that bad. A friend of mine has had a few and she advised me on what to expect. The nurses/technicians gave me ear plugs and headphone which they could talk to me through as well as play music. There were no canulas this time and the pineapple juice was just pineapple juice (something to do with the magnet). Although I don’t usually get claustrophobic, I found it was easier to just lay with my eyes closed and listening to the machine around me. They gave me a panic button just in case but I found I didn’t need it once the scan started.