C is for Catch-Up

Again, let me apologise for being MIA for a bit. The truth is, I’ve been struggling a lot recently and blogging hasn’t been that high on my priority list. That being said, let me catch you up on what’s been going on with me lately.

As mentioned in a previous post, brain fog is a very real and serious side-effect of being chronically ill. I don’t usually suffer with it but the last few months have been quite different…

It started with a drop in my appetite. A normal day for me would consist of having lunch and dinner, and maybe breakfast in the morning if I felt like it. But I began to not feel hungry, and the idea of food would make me feel sick or nauseous. I began eating less and less until it began affecting my energy levels at work. I spoke to my IBD team who recommended I started back on the modulen. This lasted for about a week before I couldn’t manage it anymore and reintroduced solid food alongside the modulen until I was able to eat a bit more and could cut out the liquid nutrition all together. However, I soon realised I had “shrunk” my stomach; I wasn’t able to eat a full meal anymore. I started eating little and often, around five to six small meals a day. This has sort of worked but it’s not always possible to eat midmorning or afternoon, especially when I’m working, so I don’t always get enough food. This has continued for some time now and I’m still trying to get my appetite back to normal so that I might be able to eat more.

Lately though, this has proved difficult; because I haven’t been eating that well, I’ve began suffering with fatigue. This fatigue has caused me to be unable to do much after work or on my days off, leaving me incapable of properly taking care of myself.

This drop in appetite and increased fatigue has left me feeling drained and I’ve begun to struggle mentally. I won’t go into details but it’s got to the point that I’ve reached out to Steps2wellbeing, a UK-based mental health organisation who I have used in the past and may have mentioned before. The initial triage session went well and I’m on a waiting list to start CBT (Cognitive Behavioural Therapy). I’m not sure if it’ll work but I feel it’s worth trying because that’s better than doing nothing.

As for my physical health, that’s begun to decline again and I have, once again, been signed off from work. I don’t know how long I’ll need but even my works occupational health team believes I need time off so I’ll take their advise. I’ve had a blood test as well as a faecal calprotectin. These have shown that some of my inflammation markers are a little raised but not a lot else. And to make this even better, I was admitted to hospital on Monday.

⛔ TMI Warning for this next bit! Please don’t read any further if talk of poop or other bodily secessions grosses you out. Thank you for reading this far and I how you are staying safe. ⛔

OK, so since being admitted via a&e, I have had a CT scan as well as an xray, which have shown that I have inflammation in my small intestine (mostly the lower part, below my stoma) but thankfully no twist, like my GP suspected. The CT also showed that there was something in both my old jpouch and the part of bowel going up towards the stoma (most likely mucous) which was making them both a bit distended. My surgeon has recommended I start antibiotics to help control the inflammation (which I have) and, hopefully, whatever is in the old pouch will eventually come out via my back passage. I started the antibiotics Tuesday but it’s still early days yet.

Eventually, I’ll have the excess bowel removed. My surgeon said that should stop (or at least reduce) the inflammation in my small intestine. Obviously, I can’t have that done now due to Covid, but maybe in six or so months time.

So that’s what’s been happening with me recently. If you made it this far, thank you. I appreciate you reading my rambling posts. This one in particular is a bit disjointed because I wrote over several weeks where a lot was going on, making it hard to concentrate. I’m sorry if some parts didn’t make a lot of sense but the brain fog is pretty strong right now. Anyway, thank you again for reading and I hope you are staying safe.

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Medical PTSD

Disclaimer/Trigger Warning: I debated for a while whether I should post this as it is a bit raw, but I feel it’s important to share every aspect of living with this disease. Please feel free to skip this post if you’d rather not read it.

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“You’re being admitted.”

Those words have been spoken so many times to so many people. No one likes being in the hospital and it can be a frightening experience. But what about when you’re being told it for the third, fourth, fifth, eight, tenth time? Time seems to stop, and your stomach feels like it’s just dropped out. And then the negative thoughts about never getting better start up all over again. And your brain is there reminding you of all the previous times you’ve been in this exact situation. And you know the doctors and nurses are just trying to help you feel better but you can’t help but feel some minor resentment towards them and you can’t take it so you burst into tears, just wishing you could wake up from this nightmare!

That’s medical PTSD.

Post-Traumatic Stress Disorder is real and can happen to anyone. It should be talked about and acknowledged, regardless of your experience. And for a lot of chronically ill people, it centres on their condition/s.

My trauma stems from having been admitted to hospital ten times in just under four years and from having tried seven different medication, none of which worked to get me into remission. It comes from having had four surgeries in three years, two of which were emergencies to save my life.

Despite the nurses being incredible and amazing, despite the doctor’s efforts to help me, I still fear going into hospital because I know what happens when I do. IV fluids are the first thing to go up, usually followed by either antibiotics or steroids. This is to stabilise me whilst they decide the next cause of action. They do x-rays and CT scans to make sure I’m not obstructed and that my bowel hasn’t twisted as both have happened in the past. And depending on what the outcome is, sometimes they’ll insert an NG tube to drain my stomach, or perhaps a drain for an abscess. Sometimes, this will take a long time and I end up with a PICC line in my upper arm so they can give me TPN in place of food.

And sure, I’ve come out alive and mostly unscathed. I’m breathing and still able to move and work and take care of myself because of (or perhaps in spite of) what I’ve been through. But that doesn’t make it any easier.

People tell me I’m brave, but bravery implies there was a choice. I didn’t choose. I wasn’t asked. On life’s questionnaire I didn’t tick the box labelled “chronic illness”. That was something that was thrust upon me without my consent.

What I’m trying to say is that for me at least, hospitals are a source of endless trauma and fear, and even going in for a simple blood test or check-up puts me on edge.

I suppose I should say something positive about how I’ve got my family beside me keeping me grounded through all this. But the truth is, not even they know the full extent of how badly this has affected me. I’ve sought out therapy before and I dare say I’ll seek it out again before long.

I’m sorry there’s no happy ending to this article but thank you for reading if you’ve made it this far. And please know that whatever you’re going through, you’re not alone. Please stay safe.

IBD open day & a work update

I went to an IBD information open day today at my local hospital. There were lots of resources for patients as well as their friends and family, and the talks covered things like exercise, research, diet and the hospital’s IBD helpline. Even though I know a lot about my disease already, I still found it informative and interesting. There wasn’t much time for networking or socialising but it was still good to be there among those who suffer as well and those who are helping make it bearable.

Next week, I’m going to a Crohn’s & Colitis UK coffee morning meet up. I haven’t been to one for a while so I’m looking forward to seeing how everyone is doing. Although I don’t feel I “know” any of the regulars at the meet-ups, I still feel some sort of connection because we have this disease in common.

As for how I am doing, I feel my recovery is going well. I went back to work three weeks ago and it’s going well so far; I’ve a gradual return, with my first week consisting of one and a half weeks because I had a week of annual leave straight after. The second week was two full days but they were easy as it was quiet and there wasn’t as much to do. This last week I worked four days with a day off in the middle to give me time to rest. I have found getting back into it easier than I thought and there are only a couple of minor adjustments I need at the moment. These adjustments are mostly regarding my ability to aid a disabled patient, specifically mobility aid users, as I can’t push a wheelchair nor support another person due to my stomach muscles still healing. This is to protect both me as well as the patient as if I am unable to support someone and they fall, I can’t help them back up again. It’s frustrating because I hate how I am not able to help my patients the way I should. Still, this is only temporary for me and I know eventually I will get better. I am for the forseeable future going to keep wearing my support belt as it helps prevent muscle pains during my work day.

As for my diet, it’s great; consisting of lots of bread, crisps, chicken, potato and chocolate. I’m not underweight but I’m on the lower end for my height so it wouldn’t hurt for me to put some back on. Plus, I’m almost always hungry so snacking is a good thing as far as I’m conscerned. This need to snack does pose a slight issue with my work though as I only get one break during the day and, no, unfortunately I can’t split it due to task assignment. I may have to start stashing snacks in various places so I can eat when it’s quiet.

Anyway, that’s all for now. Hopefully, I’ll have more to share over winter with the cold weathers effects on stoma bags etc, as well as the perils of Christmas dinner. Thank you for reading!

I’m going home!

So, I am finally going home! I was moved onto low-residue diet last night and have kept down three solid food meals. I feel fine, albeit a bit tired, and am itching to get back to my space.

I don’t know how long I’ll be signed off for but I imagine it’ll be for at least a few weeks.

I’m just waiting for the discharge paperwork and sick note and then I’ll be free to go.

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 Scandy 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.

Recovery update

It has been five days since my surgery and I think I am healing fairly well.

My pain is being well controlled by the PCA but it has been reduced to just morphine without the ketamine, with a low dose of morphine running in the background. They removed the rectus sheaths (anaesthetic being pumped directly into the wound) yesterday as one had broken and was leaking and the other wasn’t doing much either. They’re only meant to be in for three to four days anyway.

I’ve still got my cathatar in, which I suspect will stay in until I’m moving more freely. The drain is due out today, with the NG tube coming out tomorrow. And my diet has been upgraded to clear fluids.

I am feeling a lot more comfortable today and I’m even able to get out of bed, with little assistance. My hope is to start going for short walks to build up my strength.

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 through. 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 EUA 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.