D is also for… Depression

I want to talk a little bit about depression, because I don’t feel it’s talked about enough.

Depression can affect anyone at any time. It can manifest in many different ways and can be accompanied by other conditions such as anxiety.

For me, depression and anxiety come hand-in-hand. They manifest at random times, usually as extreme overthinking. It can also cause me to be critical of others and myself, make me worry I am a burden on others and that I’m letting everyone down (even when I have no logical reason to think so), and make it really hard for me to socialise regularly.

I recently started on anti-depressants after speaking with my therapist and my GP. So far, I’ve found my outlook on life has been better, my relationships seem to be stronger, and I feel like I’m actually worthy of spending time with. (I still struggle with prolonged social interactions but that’s another thing altogether).
Of course, not everyone is comfortable being on medication, especially for their mental health, but that’s ok. It took me a while to feel ok about taking anti-depressants, but now I feel a lot better, and even my partner can see the difference. Obviously, I’m not saying that everyone will be ok with taking them, but I wanted to share my experience with them in case anyone was on the fence about taking them. If you choose to not take medication, that’s ok, it’s your choice, your body. You know what’s best for you more than anyone so please don’t feel pressured to start meditation if you’re not comfortable doing so.

It’s important to talk about mental health as much as we do physical health. We need to be more open with ourselves as well as with each other in order to destigmatise mental illness.

Remember: just because you can’t see it, it doesn’t mean it’s not there. Someone may look perfectly healthy, but it’s impossible to know what’s going on underneath their smile.
Everyone is fighting a battle you can’t see, so be kind.

And if you are struggling right now, please reach out to your support network. There are people you can talk to who will not judge you or try to tell you what to do. They can point you in the direction of a professional, if that’s what you need, or just be an ear to listen. Please don’t suffer in silence.

———-

Helplines:
Samaritans (UK) : 116 123

Suicide Prevention (Canada): 1833-456-4566

Lifeline (Australia): 13 11 14

Suicide Prevention (USA): 1800 237 8255

en.m.wikipedia.org/wiki/List_of_suicide_crisis_lines

https://hubofhope.co.uk/

D is for Diagnosis

Hello, I hope you are all well. Thank you for sticking with me despite my lack of consistent posts. I’m trying to keep with the alphabet theme because it’s more interesting, I think. It also gives my posts a bit more structure, rather than me just rambling.

Anyway, today I want to talk about diagnosis. Specifically, a new diagnosis.

As you should know (if you’ve been following me for a while but don’t worry if not), I have Inflammatory Bowel Disease and Primary Sclerosing Cholangitis, as well as a few other less impressive-sounding conditions. The IBD and PSC I mention specifically because there are thought to be links between them, mainly that patients with Ulcerative Colitis (the form of IBD I have) are more likely to develop PSC than those without UC. This is known as an extraintestinal manifestation which means that other conditions may develop because I have IBD.

Other extraintestinal manifestations include condition such as arthritis, skin conditions, inflammation of the eye, anaemia, problems with the kidneys, and osteoporosis. That last one is what I want to focus on today.

Just to clarify, I do not have osteoporosis. I do, however, have thinning in the base of my spine which they found recently in a bone density scan. This, I believe is called osteopenia, but I’m not 100% sure as my GP didn’t put a name to it. Anyway, the thinning isn’t too serious, by the sounds of things, but they do want to start a form of treatment to stop it from developing into osteoporosis. My GP is consulting my GI as she doesn’t want to start anything that may aggravate my IBD. In the meantime, I am doing daily exercises that are designed for those with sciatica. This may or may not help but seeing as how I do get mild sciatic symptoms from time to time, I don’t think this will do any harm.

Speaking of exercises, I am still doing my knee exercises, as it does get stiff if I’ve not moved around for a while, and I’ve also added abdominal core exercises to my routine to strengthen my core. My goal is to do them all at least once daily so that I am as strong as I can be to return to work in two weeks. I am also trying to stick to a routine of getting up and going to bed at the same time each day (even the weekends) to regulate my sleep and get my fatigue under control.

Thank you for reading and I hope you are keeping safe and well. Until next time!

A is for Awareness

Living with a chronic condition can be tough because you are dealing with it on a daily basis. What can make it even tougher is when no one really know what your condition is or how it affects you. You never truly understand until you get it yourself, right?

Maybe you have made a new friend or started a new job but none of your colleagues know about your condition and that’s fine, you’re comfortable with it like this. But then you have to rush to bathroom for the umpteenth time that morning or perhaps they see you taking your truckload of meds at lunch. And they start to ask questions. What do you do? Do you shrug it off and say it’s nothing? Or do you tell them about your condition, bringing awareness to them?

Now, just to be clear, no one is forcing you to tell your story to anyone. You are not obliged to tell everyone who asks about your health situation (or anything else for, that matter). Telling your friend or colleague that “it’s nothing” is a perfectly fine answer and they should respect that you don’t want to tell them and if they try to push the issue, they are in breach of your trust and are not owed anything (not that they were to begin with).

However, if you do choose to share your condition with them, you may find things are a little simpler to explain; for me, telling some of my colleagues that I have IBD (and a stoma) was somewhat unavoidable; I was having issues with my stoma that were affecting my ability to perform my daily tasks at work so a couple of my colleagues found out. Although I didn’t feel 100% comfortable about sharing such personal information with them as we had not known each other for very long, it did make my life a little easier from that point on; my colleagues who knew were more aware of what I was able to do (ie. lifting heavy things was a big no-no at the time) and I didn’t feel like I needed to explain myself if I was rushing to the bathroom or needing to sit down for a moment, having overdone it.

I know, it’s not our job to educate the ignorant but if someone asks, helping them to understand a condition that affects so many but is otherwise unknown to those who do not suffer with it will help raise awareness and may even make your life a little easier. It’s your choice though, please do not feel like you have to tell someone about your condition/s just because they asked. They do not have a right to that information, it is yours to volunteer if you see fit.

Good news!

I saw my GP this morning regarding both my loperamide prescription (I’ve been having a reaction to the liquid so needed a new script for the instand melt tablets) and my rehydration methods. She said she was happy to do a monthly prescription for 112 instant melt tablets of loperamide and I can always adjust the dose as I need to. So that’s one thing fixed relatively easilly.

When talking about my rehydration, she admitted she wasn’t as knowledgable about it so she would email my dietitian for me. I explained my reasons for no longer having the St Mark’s rehydration solution and that I was instead drinking Lucozade and a suppliment drink called Sneak as both have a somewhat decent amount of sodium/salt.*

As I had a blood test just yesterday (Thurday) morning, she had a look at the results and it showed that my sodium was back to normal levels as were pretty much everything else. I asked if I should keep going with what I am doing and she agreed. She said she was still going to email my dietitian just to keep them in the loop which I am more than happy for her to do.

All in all, A good visit to the doctor. I just need to wait for my loperamide to be ready.

*Just a quick disclaimer: I am drinking Lucozade and Sneak suppliment drinks as a replacement for the St Mark’s rehydration solution as this works better for me personally. Please do not change or stop your rehydration methods recommended by you specialist/GP/dietitian without talking to them about it in detail first. Be safe.

Merry Christmas/Winter Holiday, everyone!

It’s been a little while since I last updated but there hasn’t been a lot to share. Seeing how it’s Christmas though – and we all know how fun that can be when it comes to the eating part – I thought I’d write a little update of how things have been since last time.

So, having since seen the dietitian and tried (and failed) to eat more fruit, I have started taking a multivitamin daily and have been having the occasional fruit smoothie (usually consisting of a bunch of bananas that are near going off and some chocolate chips and/or honey). I still have some tinned fruit which I’m planning of turning into smoothies at some point. Other than that though, I have been avoiding having much in the way of fruit and veg because of how badly my attempts to eat even just a little bit have gone. My stoma nurse agrees that I should listen to my body and eat what I know is safe for me, feeding back to my dietitian when I next see her.

As for the low sodium, I’ve given up drinking the St. Mark’s rehydration solution because it makes me super thirsty and I always go over my 2 litre daily fluid limit. Instead, I’ve been having other drinks like Lucozade and Sneak supplement drinks as they contain sodium as well as a load of other extra vitamins. With these, I’m able to stay within my daily fluid limit and I don’t feel thirsty at all by the evening. I realise this isn’t the same as taking the St. Mark’s solution, but it works better for me, and I am going to speak to my GP in the new year to make sure she is happy with what I am doing.

On a more positive note (minor TMI warning), I was able to eat Christmas dinner (complete with a few veggies) and so far so good; I haven’t had any issue passing anything and my stoma output has been ideal, with only a tiny bit of pancaking but no leaks! I was able to have carrots, roast potatoes as well as a spoonful of mashed swede, a piece of cauliflower and a single parsnip. I want to try and add more veg to my weekly meals, even if it’s just some carrots and potatoes, so this is a positive sign.

Anyway, whatever you celebreate, I hope you have had a fun-filled and safe 25th December.

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.

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.

Flexi appointment soon

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.

Biopsy result

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.