Category: Uncategorized

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.

Just a little update

Sorry for the radio silence recently, I’ve just not had anything to report. I’m still waiting on a date for my take-down, and even though I’m meant to be seeing my GI Tuesday afternoon, because of work, I need to move the appointment. It kind of feels like they want to wait until after Christmas but I would prefer it to be over as soon as possible. I’m getting frustrated with it and my bag and stoma cause a bit of anxiety because I’m having to wait.

I’m back to full-time now at work which has been going fine. My new manager (who started about two weeks before I went off for surgery in June) seems to e getting the hang of how our team works and our two newest colleagues are doing well which has made the atmosphere a lot less stressful and bitchy. This has helped me get back into the swing of things but I think because I know I’m going to be off again soon, I don’t want to get too comfortable. Despite having worked there for over four years now, I still feel like I need to prove my abilities to everyone because I have had so much time off. And I still feel this sometimes even after my manager explained how much he valued me as a member of the team. I’m sure it’ll all settle down once I’ve had my take down and have returned to work again, I just can’t help but feel a little inferior sometimes.

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.

Saw my surgeon this morning. My contrast enema showed my jpouch should work fine, no signs of stricture or other issues so I’m being put on the list to have my stoma take-down as soon as possible. I asked for it to not be before the end of October because I’m going to watch Wicked in the theatre then and really don’t want to miss it, so he said he’ll try for November. Finger Crossed!

Returning to work…

I went back to work last week but on a phased return basis meaning I’d work from ten in the morning until two in the afternoon on Tuesday, Wednesday, Friday and Saturday (with Thursday as a day off) for at least the first week. I thought that went really well last week so I decided to increase my hours abd stayed until four yesterday. Despite it being really quiet at work, the time went somewhat fast and I felt fine afterwards. Until I got home that is. Then it hit me just how tired I actually was. I had to miss D&d because there was no way I’d be able to consentrate for that long, and ending up spending the evening in bed watching Scrubs. As a result I only worked until two today. I’ve got tomorrow off but I can’t sleep in because I’ve got an appointment to see my surgeon in the morning. I’m going to go back to working six hours on Friday and Saturday but I won’t be increasing my hours any further for at least another two weeks; I don’t want to risk burning myself out before I’ve even get back up to fulltime hours.

Day 1 back at work

I went back to work today for the first time in seven weeks. The plan is to do four days a week (two days on, one day off, another two days on) and to do four hours a day and build back up to fulltime over a few week.

I knew I would be tired after but I was surprised that I wasn’t as tired as I thought I would be. I had a really good day at work today, everyone is being very understanding and helping me get back into the swing of things and I feel like it won’t take too long to get back to my normal.

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.

Ask

“Heyy! I first of all want to congratulate you on being so strong and inspiring others around you. I am an 18 year old girl, currently interning for a company which spreads awareness about IBD and clinical trials around it, which is how I came across Crohn’s and I have a few questions that I wanted to ask you. If you are unhappy to answer them, there is no problem and I completely understand. Thank you and sending my love xx”

I’m not an expert by any stretch of the imagination but I’m happy to answer any questions about living with IBD based on my own personal experience.

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.