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 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!

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.

I was asked how I deal with the mental side of having Ulcerative Colitis

I struggled a lot to begin with because I didn’t really know what this disease was and how best to deal the symptoms. I was on and off loads of different meds and nothing really worked, and I felt I was slowly getting worse (because I was). And I wouldn’t have survived through it if it hadn’t been for the amazing support my partner has given me. He was there with me when my symptoms became enough to go to the doctor, when I got my diagnosis, through my first A&E visit and subsequent hospital stay, he even did his own research about my condition and has always been there for me. Not once has he not been there. He is my rock. I think that, above all else, has helped me deal with this disease. I also have an amazing IBD team at the hospital who have taken amazing care of me the last three years too.

I did take a bit of a hit after my first surgery and I ended up going to see a psychiatrist. At first, she wasn’t convinced that I needed to be there but once I started opening up, she helped me get through my jumbled thoughts and feelings. I started keeping a diary of all the instanced where things had become too much and I had disassociated or had dark thoughts and I felt a small wave of relief when I started to put those thoughts down on paper. No one reads it, it will forever remain private, but I know it’s there. It’s my “lockbox” for all those negative feelings.

I think the best thing to do is talk to someone. I went to therapy because I knew a trained stranger would know what questions to ask and how best to probe the answers from me in order to help without doing more damage. That’s not for everyone though, so it’s important to find the right person to talk to.

We go through the stages of grief when we are chronically ill because we mourn the life we had before we were ill. It’s also important to let that run it’s course.

Thank you HaveYouHeardOfSarcasm on Tumblr for asking this.

Travelling with a J-Pouch part 2

As mentioned in my previous post, I travelled for around 5 hours on several trains to visit my sister earlier last week. The outward journey was fine with no issues when it came to needing the bathroom. The home-bound journey, however, was a little different because at the halfway point I started getting spasms. Thankfully, I was able to hold off needing to “go” until we reached London Waterloo station where we had about a 4omin wait for our train.

Ah, the Waterloo toilets. Another thing I wanted to mention in this post as they have… changed. Don’t get me wrong, not having to hunt through pocket fluff for 20p in order to do your business is wonderful, especially for people with IBD and similar conditions, but I can’t help but notice that the cleanliness of these toilets has dropped somewhat. There was a very strong smell as you approached that only got worse when you got inside, and they just seemed generally unclean. There was signage mentioning a plumbing issue so maybe that was the reason? I don’t travel to London enough to know but I do hope they can sort out whatever issues they are having and return the facilities to a more appealing state. I realise my complaints may seem a bit superficial but I am genuinely concerned about the spreading of infections like c.diff. I do not want to get that again as it was one of the reasons my colon had to be removed, and I don’t want to risk my jpouch failing.

On a lighter note, it seems that Nottingham has embraced Crohn’s & Colitis UK’s “Not Every Disability is Visible” campaign by putting up signage on all of their accessible rest rooms (or at least all the ones I saw anyway). I’ve started taking pictures of the supportive signs when I can so I can spread awareness on my instagram. It always makes me smile when I see the new signs.

Let’s Talk About This – 2

A couple of weeks ago I posted about a guy who questioned my use of a walking stick whilst walking home and I asked if anyone else had experienced anything similar.

I’ve had a couple of responses, all of which said they too have experienced some kind of judgement for being “too young” or not looking disabled enough to be using their mobility aids. Some of the prying questions shared include “what’s wrong with you?”, “what happened?” and “That’s just for fashion, right?” And I feel these are all incredibly inappropriate. People don’t questions those who have crutches due to a broken leg or a little old lady who walks upright but still has a walking stick, yet they seem to feel they need to “call out” those who look young and fit and healthy for using these same aids. It’s also no one elses business why someone is using a mobility aid yet people feel they have the right to ask and demand such information.

A few other things that people have had said to them whilst using their aids are “you don’t look handicapped.” and “you shouldn’t be allowed to work in public. You make people uncomfortable.” This is also really inappropriate and rude. Like I said before, it’s no one else business why someone is using a mobility aid but to say they make make you feel uncomfortable is selfish, unkind and, above all, completely insensitive. It is not our job, as chronically ill and/or disabled individuals, to ensure the healthy and able-bodied feel comfortable and happy around us. No one should be made to feel uncomfortable around other people but if someone in a wheelchair or using a walking stick makes you feel that way, then try to imagine how it must be for them. Don’t voice how they make you feel because it’s not that persons fault you feel awkward, they don’t control your emotions.

I know some people would advise to not say anything in these situations and I must admit, I’m not one for starting an argument or making a scene, but what do you think? Would you argue or answer someone if they questioned you for using a mobility aid? What would you say? Would ignore them?

Lastly, I want to say a huge THANK YOU to @maknaebias, @that-eds-life and @notsograndadventures for your contributions! You’re all amazing people and I really appreciate you sharing your stories with me.

thechronicchillpill:

Your illness has not made you ugly

Your feeding tube has not made you ugly.

Your ostomy has not made you ugly

Your cane has not made you ugly

Your wheelchair has not made you ugly

Your oxygen has not made you ugly

Your wig/your bald head has not made you ugly

Your teeth or lack of has not made you ugly

Your body has not made you ugly

Your medications has not made you ugly

Your rashes, blemishes, scars and bruises has not made you ugly

Not being able to shower has not made you ugly

Flashbacks and paranoia has not made you ugly

Changes in your body and brain has not made you ugly

Having seizures has not made you ugly

Your trauma, depression and anxiety has not made you ugly

Your hallucinations, brain fog, and confusion has not made you ugly

Your lack of control over your body, brain, mood and life has not made you ugly.

Please never feel ashamed or ugly about what your illness has done to you, no matter what it has changed it can not change the beauty that you have, so even if you feel like youre not beautiful right now, please remember,

You are beautiful and your disability can never take that from you.

“You are beautiful and your disability can never take that from you.”

Your mental illness is lying to you.

totheonedegree:

letmeprosper:

deadgoddesschronicles:

chi-dan:

jackslenderman:

icryformusic:

5sosphanandshortbread:

fun-n-fashion:

conductoroftardislight:

baileyarber:

the-malady-mill:

You are not stupid.

You are not ugly.

You are not worthless.

You are not weak.

You are not a burden.

Your mental illness is lying to you.

Fuck.

Also:

No you’re not bothering me. (Yes I’m serious.)

You’re not dumb.

You have great ideas.

Your smile isn’t ugly.

Neither is your laugh.

Yes people love you. No they’re not lying. Yes really.

YOU ARE NOT BOTHERING ME.

You don’t need to apologize, I actually AM very interested in our conversation.

YOU DON”T NEED TO APOLOGIZE FOR EXISTING.

in addition: yes i love you and your existence

Uhm… I really fucking needed to see this.

Yes, I am happy to hear from you.

You look nice today.

No, you aren’t being annoying.

Tell me more about the things you like, I’m interested in what you have to say.

If you changed your mind and can’t handle going out, we can hang out at home instead, I really don’t mind and I’m not mad at you.

Yes, I am really honestly happy that you’re here!

I think you’re pretty great actually.

Needed this and BOOSTING

needed this.

ALL OF THIS

Side note: if you tell me to stop apologizing, I will apologize for apologizing so much

Read this

You don’t need to apologise for existing!

I love you. No, really.