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.
I’ve got my follow-up flexisigmoidoscopy booked for about two weeks time. Seeing as the biopsies they took when I was in hospital showed nothing, I’m doubting new biopsies will show much either. However, this scope should show if the inflammation has gone/reduced from my small bowel.
I’m still taking the modulen daily – and will be at least until I have my scope – but this weekend I decided to have a break; I’m only having half my usual amount (200g), with yogurts and soup making up the remaining calories (sort of). I’ve found I can handle small amounts of soft food (mashed potato, banana, ect) as well as some solid foods (I’ve had a few prawn crackers and some mozzarella sticks with no side effects). I hope this means I’m getting better and that I can start to introduce solids more regularly soon.
In other news, as some of you may know, I have pet rats. Unfortunately, one of my older girls had to be put to sleep last night as she was really poorly. Her sister is pretty upset with us so we’re giving her some space but keeping an eye one her at the same time.
I have finally had my biopsy results; it turns out they have no idea what has caused the inflammation in my small bowel. No signs of Crohn’s, (which is great, by the way. One auto-immune disease is enough) but also no signs of infection either. They literally said they have “no clue what has caused the inflammation”. They want to see me again for another flexi in about a month so maybe they’ll find something then.
For now, I’m still on the modulen. I’m awaiting a prescription of it which apparently can take over a week as it’s not something a pharmacy would stock. I’m going to try and have small amounts of soft foods like yoghurt or mashed banana or potato for a few days to see how my gut handles it. So far, it’s been fine with smashed potato, and I had some banana last night which also went through me fine. I’m going to take it slow and only have it in the evening. That way, if my gut does protests, I’ll be at home where I can deal with it and not at work where I can’t.
Considering how quickly I responded to the antibiotics, I didn’t think it was Crohn’s (and nor did my GI or surgeon) but as there is no sign of infection, it does make me wonder what on earth my gut is playing at. It’s very frustrating.
I struggled a lot to begin with because I didn’t really know what this disease was and how best to deal the symptoms. I was on and off loads of different meds and nothing really worked, and I felt I was slowly getting worse (because I was). And I wouldn’t have survived through it if it hadn’t been for the amazing support my partner has given me. He was there with me when my symptoms became enough to go to the doctor, when I got my diagnosis, through my first A&E visit and subsequent hospital stay, he even did his own research about my condition and has always been there for me. Not once has he not been there. He is my rock. I think that, above all else, has helped me deal with this disease. I also have an amazing IBD team at the hospital who have taken amazing care of me the last three years too.
I did take a bit of a hit after my first surgery and I ended up going to see a psychiatrist. At first, she wasn’t convinced that I needed to be there but once I started opening up, she helped me get through my jumbled thoughts and feelings. I started keeping a diary of all the instanced where things had become too much and I had disassociated or had dark thoughts and I felt a small wave of relief when I started to put those thoughts down on paper. No one reads it, it will forever remain private, but I know it’s there. It’s my “lockbox” for all those negative feelings.
I think the best thing to do is talk to someone. I went to therapy because I knew a trained stranger would know what questions to ask and how best to probe the answers from me in order to help without doing more damage. That’s not for everyone though, so it’s important to find the right person to talk to.
We go through the stages of grief when we are chronically ill because we mourn the life we had before we were ill. It’s also important to let that run it’s course.
Thank you HaveYouHeardOfSarcasm on Tumblr for asking this.
It’s been eight days since I started the modulen nutrition drinks and it’s not been easy. I thought I wouldn’t care about not eating sandwiches or pizza and that I wouldn’t mind smelling all these foods that I can’t eat, but I was very much mistaken; the smell of cooking roast dinners or take aways is almost torture sometimes because I want so badly to eat it but I know that if I do, I’ll be back in the hospital again in no time. Because part of my small bowel has narrowed due to inflammation (a stricture), I can’t handle solids moving through my gut at the moment. Other than the modulen, I have been able to handle soup but I don’t want to try anything more substantial without guidance from my dietitian and GI. I’m hoping to see one or the other next week (my biopsy results should be back by then) but I haven’t received an appointment yet so I may have to call them midweek to find out what I’m meant to do once my modulen runs out. I hope I won’t be continued on it (or any other nutrition drinks for that matter) and that they’ll say a free-fluids diet for a few weeks. I know I can handle soup without experiencing any pain or other symptoms so fingers crossed.