I’ll keep this brief as I am very brain foggy.
Yesterday I had my EUA (endoscopy under anaesthetic). From the results, my surgeon determined I would indeed need stoma surgery. He wanted to wait until this morning (Saturday) but because I was in so much pain (I’m quite sure I asked them to knock me out at one point), he said it would be cruel to leave me like that and took me straight back into theatre.
I’m in intensive care at the moment with a cocktail of painkillers being pumped into me.
On Saturday, I had what’s called an EUA, or endoscopy under anaesthetic, in order to see what was going on in my jpouch. It showed the entrance was narrowed by a stricture and there was some liquid in it so they inserted a drain. The doctor who performed it tried to stretch the stricture with his finger (I didn’t know this until later).
Afterwards, all seemed fine for a bit until I started getting pains in my lower abdomen and near my rectum/pelvic floor. As it turns out, when try to stretch the stricture, the doctor had accidentally created a hole in my pouch and there is now an infection in the cavity behind it (to say my surgeon was not happy about this would be an understatement). “Fortunately”, the drain had gone through the hole as well and was trying to drain the waste that has leaked though. It was painful but they couldn’t do anything until the next day (Tuesday) at the earliest.
The plan, as far as I knew it, was to have an EUA so my surgeon could assess the damage. Once this was done I’d then have surgery to have a permanent stoma put in. I was told that I’d have the EUA this morning (Wednesday) and then the stoma surgery this afternoon.
That hasn’t happened. It turns out there was some miscommunication between my surgeon and another Dr. What is actually happening is my surgeon is performing the EAU this afternoon and I am last on his list. Fine. The stoma surgery will be scheduled for later this week, most likely.
What was said would happen but hasn’t (by the other Dr) is that I was first on the list to have the EAU and that it “didn’t matter” if the drain had fallen out this morning (which it did but hasn’t caused any issues). There was no mention of when the stoma surgery would be, only that they might not even have to do it. (My surgeon has already said going back to a stoma would be what’s best for me at this point).
I am struggling now as I’ve done nothing but lay around and wait for someone to take me for a test or scan or tell me some results. It’s tiring and I’m fed up. I want this fixed so I can go home and continue living.
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.
I was able to stand up with little to no assistance.
For context, I’ve had a procedure that involved putting me under anaesthetic and performing a pouchoscopy (a scope of my jpouch) and placing a cathatar into my pouch so what is currently trapped in there can drain. The opening to my pouch is so inflamed, it’s practically closed, resulting in me not having passed ANYTHING for over a week now. It has been excruciatingly painful and my stomach has been very distended. This meant I could barely leave my bed without freezing in pain at every movement, let alone standing and walking.
I’m by no means healed but I am comfortable, at least, so healing should follow soon.
This is what they think I’ve got. It means severe pain that comes in waves, usually around the abdomen. Apparently, it’s caused by the muscles contracting in an attempt to move an obstruction.
At the moment, they’re still wanting to observe me but if things don’t improve soon, I’m assuming they’ll intervene with… something, I don’t know. There have been several mentions of operating but I really hope it doesn’t come to that. Apparently, this can go away on its own but, knowing my gut, I don’t think it will. At least, not quickly, anyway.
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.
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.
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.
So, this has been brought to my attention this morning thanks to a friend messaging me about something that happened at his work the other day. When someone comes into a store/business asking to use the toilet, wouldn’t it make sense to allow them access especially after they explained they have a medical condition like IBD? You’d hope that would be the case, but apparently not everyone has got the memo. My friend works at a big UK food store in his local area and a customer came in asking to use the bathroom because he has Ulcerative Colitis. The customer didn’t have a Can’t Wait card and as a result, my friends Team Leader refused the customer access to their toilets. Thankfully, another Team Leader was on shift and allowed the customer to use them shortly after but that’s not the point. What if that second Team Leader hadn’t been there? What if that customer had to try and find another toilet and didn’t make it? What if he’d had an accident in the store? It would have been horrifyingly embarrassing for him! And then that Team Leader would have to explain to their manager why they were cleaning up human faeces from the shop floor. Of course, I know this has happened many times before in multiple places, but it doesn’t mean we should accept it and stop raising awareness to this issue.
There have been huge improvements with companies recognising the Can’t Wait card, and many of them have started using the Not Every Disability is Visible toilet signage on their accessible toilets. But clearly that’s not enough, people need to be trained when to allow someone to use their toilet! It seems we are conditioned to not let members of the general public into back areas, which makes sense from a security standpoint. However, everyone used the toilet so why is it that we need to justify our need to use one when in public? I realise a lot of this is a result of a lack of understanding. I have been asked before why I can’t “just hold it” and it’s not that simple and sometimes even impossible. But when you haven’t experienced that, it’s difficult to understand. So, yes, by all means protect stock and staff-only areas, but just be aware that if someone needs to use your toilet, it’s not because they’re being lazy, it’s because they really need to use it.
I had my flexi this morning. Everything looks normal, no ulcers or signs of inflammation. I’m continuing on the modulen for now but I’m hoping to talk to my dietitian soon and start back on solid foods. I’m still having small amounts of soft foods every now and then as I’m not having any symptoms but I don’t want to overdo it so it’s mostly just yogurt or mashed potato.