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PET CT, capsule endoscopy, what next?

Hi everyone, thank you for sticking with me this year. I know I’ve ive not been very active lately but there is a reason for that.

About 6 or so months ago, I started getting a stabbing pain near my defunct jpouch after eating dinner. It would suddenly come on but fade after a couple of minutes. Then is started happening more often and moving forward in my pelvis as though I was having period cramps. From there, it felt like it was moving up towards my stoma. This continued on and off for a few weeks until it was happening almost constantly. The pain got so bad that I was unable to stand for periods, and my hot water bottle was my constant companion. This last week it sort of came to a head and I’ve had to take a few days off work.

So what have I don’t to help? Well, first I contacted my IBD team. They were kind of stumped as to what might be causing my pain so referred me to my surgical consultant. Via his secretary, I was able to describe my pain and arrange a phone call with him (which’ll be tomorrow). In the mean time, he ordered an abdominal and pelvic PET CT scan, something I’ve not had before but is almost identical from the patient point of view as a regular CT scan. PET scans show how well organs and other body parts are working, not just what they look like (which is what a regular CT would show).

As well as that, my GI had requested a capsule endoscopy which involves me swallowing a capsule that contains tech that will send data (presumably images among other things) to a transmitter that I will wear for around 24hours. This should give him a better idea of what the inside of my gut looks like as the ileoscopy I had a few months ago didn’t get more than 15inches in before having to abort. (An ileoscopy is just what it sounds like: a scope of my small intestine via my stoma).

I have taken what’s called a “patency capsule” yesterday which is a “dummy” capsule that will devolve in my gut if I don’t pass it in 24hours. It’s purpose is to make sure the real capsule will pass safely through me and not cause an obstruction. I have an xray later today to check it’s progress and the real capsule will be next week.

What does all this mean? Well, I’m not sure, to be honest. I’m sort of in limbo right know as I don’t know what’s causing my pain, and my GI is not convinced I don’t have Crohns; he’s wondering if my initial diagnosis of ulcerative Colitis was infact incorrect (it might explain a few things…)

Now, obviously I don’t want there to be something wrong, but at least if there is, it means they can fix it. Not knowing what’s causing this pain is infuriating as it means there’s nothing to treat and I’m stuck as I am. I just want answers.

Thanks for reading. I hope you are all doing well and keeping safe.

I is for Ileoscopy

(Yes, I know I’m skipping some letters.)

Also, TMI warning! I will be going into details here.

An ileoscopy is a scope – a long thing tube with a light and camera on the end – of the ilium (small intestine) via the stoma. It’s different from a colonoscopy where the scope is inserted via the rectum.

I’d never had this type of scope before last week but now I have experienced this wonderful, slightly less embarrassing way of inspecting my gut.

My GI referred me to have one when my calprotectin came back at 4200ish (significantly higher than the normal range of below 50), and all other checks – infection, sodium, etc – had come back as within acceptable range.

I wasn’t given any prep for this scope. I was also told I didn’t need to fast. Knowing how high my output has been recently, I decided to have an early dinner the night before to ensure the least among of mess possible.

Once I was booked in, I was asked to change into a gown, and given the oh-so-fashionable “dignity shorts” (a pair of blue, elasticated shorts with a butt-flap). It wasn’t long before I was taken into the examination room and told to lay on my back. They placed an absorption pad with a hole cut out over my belly and the doctor made a small hole in the window of my bag to access my stoma. He first used a gloved finger to assess the entrance (exit?) of my stoma and which was my gut went from there before inserting the scope (which is apparently smaller than the ones used for colonoscopies..?) I didn’t ask for sedation but had been cannulated anyway, just in case. It was ok at first but got uncomfortable the further in the scope went.

I watched the screen to try and distract myself from the feeling of having something moving through my intestines, and thought I saw where my gut looped but they made no comment on that.

At one point, I thought we’d hit a blockage because it looked like the walls of my gut had closed ahead of the scope, but the doctor pushed on and was able to pass through without issue. It wasn’t long after that he stopped and began to slowly pull the scope back out.

Afterwards, he told me the 15-20cm of gut he saw (and photographed) looked pretty normal, so he wasn’t worried.

As great as it is to know there’s nothing physically wrong with my gut, it also means I am back to square one. We still don’t know what’s causing my inflammation markers to spike, and I’m still exhausted. There’s nothing they can see to treat so there’s nothing my GI team can do.

The only other thing that could be causing my fatigue is my vitamin d levels which are slightly below normal. I now need to go back to my GP to review my vitamin d & calcium supplement.

And round and round I go again.

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!

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.

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 yours irrelevant.

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.

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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.

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.