B is for Brain Fog

Firstly, let me just say sorry for not posting in a while. As the topic of this post suggests, I’ve been struggling recently with several thing. Today though, I’m going to be talking about brain fog.

Have you ever walked into a room and forgot why you did so? Or maybe you forgot what you were about to say mid-conversation? That’s relatively normal if it only happens occasionally, as it’s easy to get distracted. However, if this happens a lot, like on a daily or even hourly basis, then you’re probably suffering from brain fog.

There are many different reasons that someone may have brain fog, but for me, it’s just yet another side-effect of living with IBD. Because of my IBD, my diet is a little complicated. This can lead to deficiencies (like anaemia, for example), which can lead to fatigue which in turn, can cause brain fog.

Brain fog is like walking into a room and forgetting why. Only, it happens all. the. time. You forget what you’re doing, why and even if you were talking to somebody. I’ve found myself stopping mid-sentence and realising that I can’t remember what I was just saying seconds before. I’ve also found myself forgetting what I’m doing (often at work) which can lead to me not completing tasks or making mistakes.

Because this happens so often, I’ve had to develop ways of dealing with it. And by that, I mean I write down everything. If my manager at work, for example, tells me to do something or change a bit of written work (which we are required to do to show we understand how to use the equipment), I make sure to write them down. I also try to do tasks in order so I’m less likely to forget something. I will then check with my manager that there is nothing I have missed. This usually works when my fog isn’t too bad but when it becomes worse, I struggle to remember simple things like my symptoms (if I’m speaking to a doctor) or what happened early that day. This is when writing things down does very little and I have to really think hard to recall things. Unfortunately, I don’t have a solution for this so it can look like I’m just really forgetful. Which is why it’s so important to talk about these issues. One of the things that I’ve found can help is to explain to the person you are talking to that you are experiencing a bit of brain fog and that you may need to be told things more than once. This lets them know what to expect from you and, hopefully, not get frustrated with you if you forget something or need things repeated to you. Never be scared to ask someone to repeat or rephrase something they’ve said.

Also, side note; having a chronic illness doesn’t automatically mean you’ll suffer with brain fog, and you don’t need to have a chronic condition to experience brain fog either. Just because someone else’s fog is denser, doesn’t make your irrelevant.

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.

**********************************************************************************************

**********************************************************************************************

“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.

Travelling with an Ostomy, round 2

I know I’m a little late, but here is what happened when I flew to Amsterdam a couple of weeks ago.

At our local airport, they have a metal detector and, more recently, a body scanner. This scanner is designed to detect anything that might be hidden under clothing, such as a weapon or other items. This included my ostomy. I can’t say I was surprised by this as it has been picked up before when we last flew. The security guard was polite and, after scanning under my hood with a handheld scanner, she asked if I had anything on my stomach. I explained I had an ostomy and, to my surprise, she smiled and took me to a side room, along with another female colleague. She said she didn’t need to see my bag but didn’t want to scan it in front of people and chose to do so in the side room as this gave me more privacy. It took less than five minutes and they were both very polite and kind about the whole thing. They wished me a safe journey and that was that.

I have read some of the horror stories other ostomates have shared about their experiences when going through airport security (one had been asked to open their bag, another had their bag ripped off their stomach without their permission, ect). Needless to say, I was a little nervous, despite our previous time flying having been without incident.

Thankfully, I was able to put my mine at ease before even arriving at the airport by visiting their website. My local airport has a “special assistance” section which included a helpful “tips” pdf. Reading through, I found that not only were they part of the green lanyard scheme (which helps staff identify passengers who have a hidden (or not so hidden) disability or illness), but they have also done a load of training with a list of charities, including Stomaware and Crohn’s & Colitis UK. This means that their security are aware of sensitive subjects like IBD or a stoma, and know how to proceed without invading someone privacy or dignity. All in all, I was quite impressed with how they handled things.

Now, I don’t know if any of you have had to squeeze into the on-board toilet, but from previous experience, I didn’t want to have to go anywhere near our planes facilities, especially with my bag; the cubicle is tiny and I know output can be smelly and I didn’t want to be the one to stink out the entire plane. Thus, I decided I wasn’t going to use it. But how was I going to ensure my bag didn’t fill up whilst in the air? Simple; I took extra loperamide throughout the day and before boarding. I also made sure to eat a small, carb-filled meal (we were flying around dinner time) and a bag of jelly sweets. Thankfully, this worked. I would like to point out that this only worked for me because my output is usually quite watery. If it were ostomy-normal consistency, then I probably wouldn’t have needed to do any of this as the flight was only about an hour.

Conclusion: flying with an ostomy is way easier than I thought.
I would recommend anyone who is planning on flying with a medical appliance seek advice from your airline provided/airport. It can’t hurt to let them know before boarding.
Although not always necessary, a travel certificate might help if you are taking a lot of supplies with you. And if you are taking medication, always keep it in the original packaging. One last thing, put your medical supplies in your hand luggage. You don’t want them getting damaged or lost whilst in the hold.

IBD & cardiology

For a while now I have been having palpitations on and off for no particular reason. I started checking my heart rate, using a built-in app on my phone, on a somewhat daily basis shortly after my IBD diagnosis back in 2016 and noticed my resting heart rate was always above what the app said was normal for someone of my age/height/weight/gender. I didn’t think much of it because I was on a lot of meds that, for all I knew, could be causing the increase in heart rate. It was always high whenever I was admitted to the hospital too but I assumed that was due to being in hospital as well as being unwell at the time.

Skip forward to just after my first surgery, and my resting heart rate was always above 120bpm. For reference, for an average adult of my height/weight/age/gender, the resting heart rate is typically between 60 & 80bpm. I figured the 120bpm was a direct result of my surgery and after a few weeks of slowly building my weight back up, my resting heart rate dropped to around 90bpm or so.

From there, I didn’t really notice it much; it became sort of like background noise. I’d notice my heart beating really fast during and after exercise but didn’t really think much of it then either because that’s meant to happen, right?

Anyway, after having surgery for the fourth time back in July last year, I started getting sudden onset palpitations with fast breathing and a somewhat panicked feeling (a panic attack?). Again, for no apparent reason. This would last for about 2 minutes before fading, leaving me feeling drained and anxious, so I finally went to my GP. She referred me to have a 24 hour monitor, which involves wearing a heart monitor (similar to an ECG) for 24 hours that records the wearers heart rate which is then analysed by a cardiologist.

After having the 24 hour test at the beginning of the year, I finally saw a cardiologist in clinic earlier this week. They did an ECG and an ultrasound on my heart and, thankfully, everything looks normal. My heart infrastructure is fine and looks healthy, and aside from the palpitations and high resting heart rate, there doesn’t appear to be anything wrong. They don’t want to try any intense treatment unless it starts interfering with my daily life but they did recommend trying beta-blockers to help regulate my heart rate. Because beta blockers can make you tired, the cardiologist said I wouldn’t have to take them all the time but could try taking them whenever I start getting palpitations.

My GP has already filled a prescription for me so I guess I’ll give them a go once they’re ready. Whether this is related to my IBD or not, I don’t know, but it wouldn’t be too much of a stretch to think so as IBD can effect many parts of the body, not just the bowel. I’ll update again on this after I’ve been taking the beta blockers for a bit.

In other news, I’m going to flying to the Netherlands later this week so expect a post about that later next week. I’ll be sure to take note of how going through security goes this time compared to last time (hopefully, it’ll go just as smoothly).

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.

Dietitian’s know what they’re talking about, right? (TMI warning)

I saw the dietitian early last week and it turns out my sodium is super low. She recommended I start drinking 1 litre of the St Mark’s rehydration solution daily and 1 litre of other free fluids. She also said I need to start reintroducing fruit and veg and gave me some info on how best to do so. She recommended tinned fruit as a good alternative to fresh fruit as it’s softer and has already skinned, so I bought some tinned fruit to try.

A few days after seeing her, I tried having a few bits of tinned apple and mango. It went through me fine but my output for that afternoon was near solid so it ended up pancaking in the bag and almost caused a leak at work. Thankfully, I had my emergency kit with me so I could change in the toilet. I left it another couple of days before trying the apple again (leaving out the mango because I thought this was a bit too physically fiberous for me), but once again, I pancaked and had to change at work. Since then, I’ve stuck to banana’s and smoothies because I don’t want to risk another leak, especially if I’m not at home. I’m also going to start taking mutlivitimans daily and try to have fruit smoothies more often. I know I can eat carrots and potatoes when they are peeled and cooked well so I’ll be doing that too.

I know the fruit didn’t cause a blockage but it could have done and I’m so scared of being hospitalised again. I feel as a medically trained dietitian who’s working with new and veteran ostomates, she should know more about how certain foods effect the stoma output as well as the intestines. If I was brand new to having a stoma, I’d have followed her advise and probably be dealing with leaks if not a full-on blockage. I’ll be sure to let her know of the outcome of her advise when I see again early next year. (Don’t worry, I’ll be nice.)

Coffee Morning!

I went to a Crohn’s & Colitis UK coffee morning today with my mum. It was good to meet new people, we talked a lot but there’s never enough time to speak to everyone. I hope to go to the next one near me though. I met someone who has had a jpouch for around ten years now, and I spoke to someone who came with their mum (like me) and who both have Crohn’s. A couple of them were also at the IBD open day last weekend too. I’ve always thought that these meet-ups are a good idea, they give you somewhere to talk freely and feel safe, as well as being part of a community that understands and doesn’t judge because they’ve been there. I know they’re not for everyone but I enjoy it.

In other news, I saw my surgeon last week and he’s very happy with how I’m doing. He said he doesn’t want to do anything now for at least another year, which is fine by me (two surgeries is more than enough for this year, thank you very much). He said I’ve got three options though; 1) I can have my stoma closed and try the jpouch again, 2) I can have my jpouch & rectum removed, a permanent end ileostomy formed and have a barbie-butt, or, 3) I can stay as I am with jpouch & rectum intact and loop-ileostomy. I am quite content to stay as I am for now, but eventually, I will want to go for option 2; permanent stoma and barbie-butt. I don’t want to go back to the jpouch because not only is it ulcerated, but I still have the perforation near the entrance, both of which make me not want to risk it failing again and having to have yet another surgery. I could stay as I am indefinitely but I think I’ll always feel like it’s not finished and I just want this to be sorted once and for all.

So, that’s it for now. Work is going well and I feel able to do more things and for longer. My appetite has returned with avengence so I’m eating like a horse at the moment. My weight is very slowly increasing so all good from where I’m sitting.

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!

Why am I using my stick today when I didn’t need it yesterday?

I am travelling by train for the first time since my surgery. The journey involves several changes and I am carrying quite a full backpack. As I am still recovering, I need to be careful that I do not fall or get knocked into as these could both potentially cause muscle strain that can lead to other complications. Although I haven’t needed my walking stick for the last couple of weeks, having returned to work this week has shown me that I am far from fully recovered.

As my work requires me to be on my feet a lot, by mid-afternoon yesterday my stomach muscles were beginning to protest. I thought this ache would go away if I sat down and hugged my hot water bottle when I got home but, unfortunately, the pain persisted throughout the night and I am still quite sore even now.

What does all this have to do with my using my walking stick today? Well, as I am travelling through the busy London underground for part of my journey, it will not only help support me as I walk around, but it will also act as a “red flag” to other commuters that I won’t be able to move out of their way and to be mindful to not jostle me as they rush for the tube.

I have said this before but I think it’s worth repeating because not everyone understands that you can be fine one day and not the next. Recovery is not linear.