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.
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.
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.
I’ve had a bit of a set back. Yesterday, I woke up feeling very cold and shaky. My temperature was ~40°c and I was tahycardic, with heart rate over 130bpm!
The nurses and doctors were quite concerned and I was put on a very strong IV antibiotic, which helped a lot. They also put me on IV fluids as I was feeling sick and wasn’t drinking much. They did blood culture checks, both peripherally (from a vein) as well as from my PICC line because there was a chance the line was infected. They also did a urine dip from my cathatar.
While they were waiting for those results, they took me for a CT scan to check if I had any liquid pooling in my pelvis. Unfortunately, I have a pooling near my stoma and they had to put in a drain last night. I believe my PICC line is fine but they’re not using it at the moment.
I’m very sore and achy, and not as mobile as I was a few days ago. I feel like I’ve taken a few steps back.
This is what they think I’ve got. It means severe pain that comes in waves, usually around the abdomen. Apparently, it’s caused by the muscles contracting in an attempt to move an obstruction.
At the moment, they’re still wanting to observe me but if things don’t improve soon, I’m assuming they’ll intervene with… something, I don’t know. There have been several mentions of operating but I really hope it doesn’t come to that. Apparently, this can go away on its own but, knowing my gut, I don’t think it will. At least, not quickly, anyway.
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.
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 have finally had my biopsy results; it turns out they have no idea what has caused the inflammation in my small bowel. No signs of Crohn’s, (which is great, by the way. One auto-immune disease is enough) but also no signs of infection either. They literally said they have “no clue what has caused the inflammation”. They want to see me again for another flexi in about a month so maybe they’ll find something then.
For now, I’m still on the modulen. I’m awaiting a prescription of it which apparently can take over a week as it’s not something a pharmacy would stock. I’m going to try and have small amounts of soft foods like yoghurt or mashed banana or potato for a few days to see how my gut handles it. So far, it’s been fine with smashed potato, and I had some banana last night which also went through me fine. I’m going to take it slow and only have it in the evening. That way, if my gut does protests, I’ll be at home where I can deal with it and not at work where I can’t.
Considering how quickly I responded to the antibiotics, I didn’t think it was Crohn’s (and nor did my GI or surgeon) but as there is no sign of infection, it does make me wonder what on earth my gut is playing at. It’s very frustrating.
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.
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.