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.
Tag: ostomate
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.)
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!
Ask
@thoughtsfromtheam asked,
“Do you mind me asking what surgery you will be having? I had my large intestine taken out in 2015, then had a colostomy while it healed for 6 weeks, then had it taken down. Is that similar to what you are having done. I have a J-Pouch now.”
Firstly, no of course I don’t mind you asking. I am very open about this and am happy to answer questions if I can.
Secondly, yes. I had my colon removed in April 2017 resulting in an end ileostomy. I then had my j-pouch formed with a loop ileostomy in June 2018 and am currently waiting to have that taken down. I hope this was helpful.
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.
I haven’t had much to report recently; I’m still waiting on a date for my surgery, and I’ve been feeling pretty good since going back to fulltime work. I’ve shifted my hours a bit so my work days are broken up so I don’t burn myself out too quickly. Other than being quite tired after work, I’m doing ok.
Day 25
The doctors are pretty happy and, provided I can keep food down again today, my PICC line will be removed and I may be discharge tomorrow.
I’ve managed half my cheese sandwich so far today but my tummy is aching so I’m taking it very slowly. I’m going to try and tackle the other half later this afternoon.
The pain is bearable but it can be a bit much so painkillers are still being offered. I’m trying not to ask for oralmorph because I don’t want to become dependant on that but I will if the pain gets too much. They did say I can have a bottle to take home with me if need be but I’d rather I only needed codeine and paracetamol.
It’s been almost a month since my surgery so I am really looking forward to being back home again. I miss my bed, my computer, and, most importantly, my partner and my rats. I know he comes to see me every evening but I still miss him just being there during the day.
I’m not getting my hopes up too high but I’m staying positive. I hope everyone is having a good and safe weekend.
Day 24
Generally feeling pretty good today. I’m still a bit sore around the middle but that’s to be expected. Food-wise, I’m still eating small amounts of soft food but I’m going to try a sandwich tomorrow and see how my gut reacts to something more solid than soup.
The doctors are hoping to send me home this week but we’ll see. It’s been almost four weeks since my surgery and I think I’m mentally ready to go home but my body isn’t quite there yet.
I need to make myself a meal plan for when I get home to ensure I don’t overeat for the first month or so. If I actually get around to writing it down, I’ll be sure to share it.
Day 19
The TPN is finished! I still have the PICC line just in case but they’ll likely take that out tomorrow. The doctors are happy and are looking at Wednesday as a home date. I just hope nothing happens in the meantime. I do get the occasional ache in my gut but it’s bearable and paracetamol numbs it.
Pre-assessment all done!
They weren’t kidding when they said anywhere from two to four hours! The longest part was waiting to have my blood test (one and a half hours) but other than that, it was over pretty quickly. They almost forgot about me when I was waiting to see the anaesthetist but that was sorted after I asked at reception. They had to do an ECG because I still occasionally (and I mean very rarely) get palpitations but they’re not worried too much about that.
Bye bye hospital, see you in two days!
What Can I Eat 