Update

So, I’m on free fluids but I’m having some trouble keeping it down. We think it is linked to my anxiety so I’m having diazopan to help keep me calm.

I managed to have some soup for lunch and I’ve been prescribed Sandy Shakes which are a different type of nutrition drink from Fortisip made with powder mixed in milk. It tastes better than Fortisip and is less thick. I’ve been able to keep all that down so far so fingers crossed the diazopan is helping.

I’ve also had my cathatar and PCA removed and I’m also cannula free, for now. They’ve stopped my antibiotics and are going to see if my inflammatory markers stay down because of they do, that’s means the infection is gone.

The drain is staying in until at least Friday and they said that if need be, I can go home with it. Honestly, if it means I can go home, I’ll go with the drain. Fingers crossed I’ll be home by the weekend.

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.

Surgery went well

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.

Surgery update (in rant form. Sorry)

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

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.

Small achievements #1

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.

Intestinal colic

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.

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.

I have had mini thin-base oven pizzas a few times over the last couple of weeks so I thought I’d try a pizza hut pizza Thursday night. This was a bad idea. My stomach and gut hurt and I had to force myself to throw up because of it. I only had one slice and two bits of the cheese and bacon tear ‘n’ share garlic bread. I’ve had stomach cramps on and off now since last night (Friday) because I decided (like an idiot) to warmed up two slices and eat them slowly. I was fine for a while but then the cramps started along with spasms in my pelvic floor muscles. I’ve not eaten anything today except about 300ml of modulen and even that seems too much. I’m currently on the sofa, hugging a hot water bottle and watching Netflix. Hopefully, this will pass soon.

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’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.

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.

(Post also available on WordPress)

Today is World IBD Day and I wanted to share a few things (treatments, symptoms ect) about living with IBD that I have personally experienced.

Symptoms of IBD that I have had include stomach cramps, fatigue, diarrhoea, constipation, weight loss, partial blockages of the small bowel, dehydration, blood in my stool and muscular cramps in the abdomen. I haven’t had all these symptoms at once (thankfully) but I have experienced them all in some capacity and in various combinations.

Treatments I have tried for my IBD include a lot of medications as well as surgery. I have been on anti inflammatory (mesalazine), steroids (prednisolone), immuno-suppressants (azathioprine, mercaptopurine & infliximab), anti-ulcer (omeprazole), antibiotics (co-trimoxazol), meds for bile salt malabsorbtion (colesevelam), as well as vitamin/mineral supplements (folic acid, adcal-d3 & colecalciferol). I have also been on fortisip nutrient drinks and (as of this week) modulen which is a complete nutritional replacement drink.

Other treatments (for lack of a better term) would be surgery. I had my colon removed about two years ago and a temporary end ileostomy (stoma) placed. Although many would assume this has “cured” me of my Ulcerative Colitis, removal of the affected organ sadly does not cure an auto-immune disease.

Side effects of these many treatments are numerous. From the medication alone I suffered with bloating, insomnia, loss/increase of appetite and weight gain/loss. The surgeries came with there own set of side effects which included muscle spasms in my rectum and abdomen, partial blockages of my small bowel, strictures (narrowing of the gut) and ulcers from infection. I also suffered with a case of ileus which is when the muscles that move food through the gut slow down, causing the bowel to effectively stop working for a time. This happened after my second surgery to form my j-pouch and took about three-four weeks to heal. Treatments for it included an NG-tube (a thin tube that goes in through the nose and down the oesophagus into the stomach to extract food and other waste that can’t move into the small intestine), and TPN (Total Parenteral Nutrition – another form of liquid nutrition that is fed via a PICC line (Peripherally Inserted Central Catheter) that goes in through a main line in the upper arm and ends somewhere near the heart).

I think out of all the things I listed here, ileus was the worst. It came on suddenly after surgery and meant I wasn’t allowed food for almost a month. It started with vomiting and my stoma stopped working (meaning nothing was passing through my gut). This is when they inserted the NG tube. They had to replace it once but it stayed in for about two weeks to clear out my stomach. In the meantime, they inserted the PICC line (which can be left for several weeks or even months) and started me on TPN. Eventually, when the NG tube wasn’t bringing anything else up, they removed it and after a couple of days, allowed me to try soup. When that stayed down, I was allowed to try soft foods and, eventually, I was back on normal diet and discharged from hospital after almost four weeks. This is the longest I’ve had to stay in hospital and I hope to never experience it again.

So, there you go. I know it’s a long post but I thought it would be worth sharing as people so often underestimate the impact of IBD on a patients life.

……

PS. This is the same article on my WordPress Blog but seeing as it’s extra long and I know not everyone will want to click the link, I thought I’d share it here in full.

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…

View On WordPress