E is for Energy

Like most chronically ill people, I know of, and use to some extent, the Spoon Theory to explain my fatigue. If you don’t know, Spoon Theory is the idea that when you are chronically ill or have chronic fatigue, you only have so much energy, or Spoons, to do tasks. Each task taking up a different number of spoons. For example, say you wake up and you have five spoons to spend that day. Having a shower and getting dressed may take up one or it may take up two, depending on your condition. Let’s say it takes up two. You now have three left to use at work, come home and make dinner. But if works takes up three (or in most cases more) spoons, you won’t have any left to make dinner. So, do you have the shower or not?

This is one of the many issues chronically ill people, or “Spoonies” have to deal on a day by day basis.

Some days, I’m ok; I have enough spoons for work, a shower and dinner. But some days, like today, I barely have enough to get dressed. I needed to shower and wash my hair. This is something I really don’t like putting off because it makes me feel worse if I do. So of course I forced myself to shower this morning. Even as I sit here and write this though, I am feeling drained, and worried I’m going to struggle at work. (and its not even 7am yet).

This is my reality. This is why I sometimes cancel plans last minute. This is why, some days, I can do nothing more than get dressed and sit on my computer all day playing games.

And it’s not just me; a lot of Spoonies face the same difficulties. We all get bad days but when your a Spoonie, your bad days can be so much worse.

Please remember to be kind. If someone says they are fatigued, they probably mean it. There is a big difference between being tired and being fatigued.

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Please note: you don’t have to be chronically ill to have Spoon Theory apply to you. It is entirely ok to relate to Spoonies even if you are otherwise healthy.

Also note, there are a lot of variations on Spoon Theory, such as the Match Box and Old Phone Battery. Thanks for reading.

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.

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.

First day back!

I returned to work today. I’m starting slightly later but otherwise doing normal hours for the time being. My hours will likely go back to full time next week but it’s not long until I finish there and start working at the local hospital. I’m a little nervous about starting a new job because of my UC and recent surgery but at the same time really looking forward to it. (I’m going to do a post about starting a new job with chronic illness later).

Anyway, back to today; today went really well. We weren’t too busy so I was able to take it easy. I was able to stand longer than I thought I would so that’s a bonus, and it felt good to be getting back into the swing of things. I’m very tired now but not more than is normal for me.

As for how my general recovery is going, it’s going pretty well. My stomach is still swollen, particularly around my wound, but the wound is looking more like a scar and less like I’ve just had surgery. I don’t need to keep a dressing on it now which is great because I have a slight allergy to the adhesive. The skin where my ostomy bag used to sit is super itchy at times but e45 cream works to cool it down.

Day ten of being a j-poucher

Today marks just over a week since I had my loop ileostomy closed and my jpouch put to work properly. I’m not going to lie, it’s been a weird experience gaining back control over when I poop; weird and a bit painful.

I expected it to be painful so I’m not surprised. It’s similar to the pain I had when I still had my colon but it’s in a more concentrated spot.

I’m taking painkillers regularly but it’s difficult to get comfy, both during the day and at night. I’m finding ways around this though with cushions and laying on my side instead of my back (which I’ve found causes pain in my stomach as well as near my pouch).

As for food, I’m eating four to five small meals/snack during the day, with the last of these being no later that eight in the evening so as to lessen the risk of issues at night.

Speaking of night time, I was terrified I would have leaks and accidents while I slept but, so far, everything’s been fine. I have a pack of incontinence pants just in case but I’m hoping I won’t ever have to use them.

Seen the consultant this morning…

I’ve started passing tiny bits of gas the last couple of days, as well as green mucus, which the consultant is quite happy with. I’m being changed to free fluids and my PCA pain button will be reduced over the next day. They recon I will be home within forty-eight hours but, knowing my stomach, it’ll likely be longer.

I’m trying to stay positive though, so I’ll give myself until Wednesday next week. That’s when I think I’ll be well enough to go home. If it’s earlier though, great!

Surgery update.

Everything went as planned on Wednesday. I’ve had my stoma reversed and I now have a lovely line of staples running across one side of my tummy.

I’m nil-by-mouth because there is still a lot of gas trapped in my gut but once that passes, I’ll be able to start eating a soft diet. (I’m so bloated, I look like I’m three months pregnant).

Other than that, I’m moving around quite independently and, although I get tired quickly, I’m staying awake for longer now.

It’s the weekend now so I’m going to rest and go for short walks up and down the ward corridor so by Monday, hopefully, I’ll start paying some of that gas.

I have a date for surgery!

I got a call from the hospital this afternoon, my surgeon had a cancellation so they offered it to me. The only issue I have is that it’s for next week so very little time to prepare mentally. I know I’ve been a little impatient about getting my stoma removed but now that it’s less than two weeks away, I’m a bit nervous. Not because it’s surgery though, it’s more what comes after; the pooping “normally” and what that entails. I’m sure I’ll be fine but I guess we’ll see.

Worst night in a long time

So, yesterday evening was spent with my partners Oma (she’s German) celebrating her birthday and we had Chinese, which I’m usually fine with. However, shortly after eating it, I found my output had beco. Every watery and the skin under the adhesive was super itchy. I tried to ignore it but by the time I got home a few hours later, it had become painful. I decided to change my bag, which would be the second time that day, and go to bed. That didn’t work; it was still painful and itchy and I couldn’t sleep. My solution was eat half a packet of mini marshmallows and to take a codiene tablet. This has worked so far but I need to make sure I drink plenty today to avoid a blockage.

I’ve been advised by both my GP and my stoma nurse to increase my loperamide intake from four single doses to four double doses per day (I’m not sure on the exact measurements). I started doing that yesterday lunch time and I’m assuming it just needs to get into my system but it seems to be taking its sweet time.

I’m very frustrated and tired but I’m trying to be patient and stay positive. My new blob is not making either easy. I hope everyone is having a good and safe week so far. Rant over.

Recovery update

It’s been two months since surgery so I thought I’d do a little update.

I haven’t had a partial blockage in a while now and I feel my appetite has returned so I’m eating normal food now in slightly smaller portions with the occasional snack in between meals. I’ve found a normal diet (including gluten and milk) is working fine for me at the moment but I suspect I’ll have to reduce my gluten intact later once I’ve recovered a bit more and my eating habits return to normal. My snacks are usually either crackers, PomBear crisps (I find crisps like Walkers don’t digest too well) or biscuits/cookies. My main meals mostly consist of chicken (breaded or in a non-spicy sauce) with some form of potato (chips, wedges, mash ect.) I can’t eat beans so I’ll sometimes have tinned spaghetti instead. Noodles and pasta are ok for me in moderation but I don’t cook a lot of it as it’s only me who’ll eat it. As for sweet stuff, pretty much anything is fair game so long as it doesn’t have any nuts/seeds or dried fruits in it. I sometimes binge on cookies or chocolate.

As for my walking, I’m able to walk just fine when I’m inside my own flat or at my parents as I know there are plenty of places to sit down if I need to. However, when I’m outside, I’m a bit slower and a lot more cautious of the people around me (I don’t fancy an accidental elbow to the stoma). I’ve been using my walking stick for the last month or so but I don’t feel I need it as much anymore. I’m sort in a grey area of needing it and not needing it so I’m trying to go out with it in my bag in case I need it later, rather than using it straight off the bat.

In regard to my stoma, it’s been better since using the barrier rings my stoma nurse gave me. The skin looks and feel so much better and the bags feel like they could last an extra day if I needed them to which is ideal.

Lastly, I’ve got an appointment to see my surgeon about closing off the blob later next month so if all goes well, I’ll be stoma-free by the New Year.