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.

Starting a New Job with Chronic Illness

I was diagnosed with Ulcerative Colitis (UC) in April 2016. By that time, I had been working for the same company for almost two years but had had several sicknesses due to my (at the time undiagnosed) UC. I was working in a retail environment as part of a small team of around five or so people so I was in direct contact with the general public and worked closely with my direct manager. She was understanding when I was suffering with symptoms but she didn’t really understand. By now, I had a high level of sickness and my HR had flagged it and had told my manager to put me on a sickness plan for the next six months. She told me she wouldn’t have done so if HR hadn’t flagged it but she had no choice in the matter. This lasted about a month.

After several tests (including blood and stool), I finally had a colonoscopy which showed signs of mild Ulcerative Colitis. I immediately took this diagnosis to my manager who sent it to my HR who decided there wasn’t much point in a sickness plan now that I had a chronic diagnosis.

From there, I endeavoured to learn as much about my disease as possible. In meantime, my manager had been offered a role in a different location (but still within the company) and we were to get a new manager from with the company. I met this new manager when she came to see the store and talk to my previous manager about the team. My manager told the new one about me and my condition and as I walked with her to the train station (we both lived outside the city), she asked me about it. I explained briefly what my symptoms were and what the disease was and she said something along the lines of “that’s like what I’ve got”. I couldn’t help but think “yeah, sure”. As it turned out, she did in fact have undiagnosed UC. Not as severe as mine but it meant she completely understood. She got her diagnosis about a year later, after I had given her loads of information about UC and what reasonable adjustments could be made should I require them (I didn’t, thankfully). Because she understood, it made things a lot easier for me if I was flaring (which I was doing a lot) so I was glad I had told her about it and that we could talk so openly about it.

The question is though, do you have to tell your employer/s of you condition?

Well, no, of course you don’t have to. I only did because it got HR off my back. I didn’t really have a say in my new manager finding out but I’m glad she did because it made it so much easier if I needed a day off or if I was running later or needed to run to the bathroom midsentence (all of which happened a lot). It also meant that when I had emergency surgery, she was 100% supportive of me. She fought my corner and we got on really well. I could talk to her about it and she knew she could come to me if she needed to as well.

If you choose to tell your employer, make sure they have all the information they need to help and support you. If they require more, link them to association websites or get your specialist to write a letter. If you choose to keep your condition to yourself, that’s fine too. Just make sure that if you are sick and need time off because of your condition, that you tell you HR.

As for telling colleagues, only do this if you feel comfortable doing so. And if you have told your supervisor/manager but don’t want your colleagues to know, tell you manager so.

My colleagues all know about my condition; it was a bit hard to hide it when I was spending half my time at work in the bathroom. I also didn’t hide what surgery I had had. When we had two new people start, I wasn’t going to tell them unless it came up in conversation. One of them used to work in health care and so it ultimately did come up so she found out pretty early. The second newbie only found out because I talking to him and another colleague and it came up in conversation. I just briefly explained I had a stoma bag due to IBD and that was all the explanation he got. His reaction was pretty much “oh, ok”.

Now, that’s my old job. I will be starting a new job with a completely different company but within the same industry. Their recruitment if pretty thorough so my condition of course came up. I had several conversations with HR and my new supervisor about reasonable adjustments and so on so the people who need to know, know. As for my new colleagues, I won’t be starting any conversations with “hi, I have UC. What’s your name?” but I won’t hide it if it comes up in conversation. Of course, I won’t go into details (because, honestly, who wants to know about another’s bowel movements?) but I won’t miss the opportunity to educate someone on IBD.

What about you? Have you told your employer? Are you open or more reserved about your chronic illness? Would you want people to know about it or not? Let me know.

Day 20 – an update

It’s been almost three weeks since I had my stoma closed and things are going fairly well; I haven’t had any accidents (yet) and I’m slowly reintroducing foods I enjoyed with my stoma. I have found that if I eat too much though (for example a whole oven pizza), I don’t have a fun night. And what I mean by that is a lot of discomfort in both my stomach and my pouch as that much food travels through my gut. I am able to control this with painkillers, though.

My wound was checked by my GP nurse last week. It’s healing nicely but the middle was still a bit open so she left in four of the clips. I’ve got another appointment with her tomorrow where, hopefully, she’ll remove the rest of the clips. I’m looking forward to it being fully healed so I can have a nice bubble bath, something I haven’t been able to do for quite some time.

As for my mobility, unlike last time, my legs haven’t atrophied so walking or standing for any length of time is a lot easier than it was after either of my previous surgeries. My stomach is also not as sore as it was last time. I think both of these are because of how simple and straight forward this last surgery was. Where as back in June, the surgery was quite a bit more complicated (they were reconstructing a lot and moving my guts around quite a bit) and the recovery directly after was difficult due to the aforementioned moving of my guts making them shut down temporarily (otherwise known as ileus). This time was easier as the surgery itself was only two hours long and it involved a lot less handling of my gut meaning I was less likely to develop ileus.

For the most part, I feel fine. I’m able to walk around and do a few household chores but this does tire me out and I find I need to rest for a while before trying to do anything else. I spend a lot of time sitting at the moment (mostly reading or on my computer) but I am starting to go outside. I was able to go for a short walk the other day but, again, this made me quite tired. I’m sure this will improve overtime as it has in the past so I need to be patient, recover isn’t linear.

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.

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.

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.