Obligatory Covid-19 related post (kinda)

So, as we all know, there is a pandemic at the moment. As someone with a chronic illness (and as someone whose partner has active asthma), I am concerned. I don’t want to catch coronavirus and I certainly don’t want my partner catching it. If we did, it would be extremely serious for us both.

I work for the NHS and so am classified as a key worker (as is my partner). Where he can work from home, I can not. I am currently at home due to an IBD flare-up (which I’ll get into in a bit), but I will eventually need to go back to work. The thing is, even though my work’s Occupational Health has advised I stay away from patient interaction, my job is patient-facing, so I’m not sure what I’ll be able to do when I do go back. And on top of that, what if I pick up coronavirus on my way home or from an asymptomatic colleague? There’s not a lot I can do other than opt to self-isolate. This will have to be something I discuss with my manager when I return to work.

As for the flare-up, it started about three weeks ago. We had just got back from the Netherlands and I was starting to experience stomach cramps. I put this down to having tensed during the flights as I dislike flying, namely take-off and turbulence. I thought they’d go away after a bit but no, they kept getting worse. Two weeks ago, it got to a point where I was having to sit down because I would get nauseous if I was stood for too long. That’s when the fatigue began to set in, to a point that my colleagues where starting to notice. They would tell me that I didn’t look well and that I should go home. I didn’t want to. The fact is, I haven’t been at this job for a year yet and my probation period had already been extended due to two instances of sickness (both of which I was hospitalised). If I called in sick, that would be three instances within the first nine months of my employment and I didn’t want to risk losing my job (despite all the reassurances from my colleagues to the contrary).

Come Friday of that week, and I am feeling awful. Thankfully, Friday afternoons are quiet for me at work so I didn’t have to do a lot. I decided I would use the weekend to rest and evaluate my condition Monday morning. I think they saw it coming as my manager was not surprised when I called in. I was signed off for two weeks. That two weeks is almost up and, unfortunately, I am not feeling much better. If anything, the pain is worse. I’ll be speaking to my GP again Monday to extend my sick note. It sucks but I have been advised by my GI to stay at home if I am experiencing flare symptoms. Hopefully, things will settle down soon and I’ll feel well enough to return to work.

Anyway, to everyone who reads this, whether you have a chronic illness or not, stay safe.

Coffee Morning!

I went to a Crohn’s & Colitis UK coffee morning today with my mum. It was good to meet new people, we talked a lot but there’s never enough time to speak to everyone. I hope to go to the next one near me though. I met someone who has had a jpouch for around ten years now, and I spoke to someone who came with their mum (like me) and who both have Crohn’s. A couple of them were also at the IBD open day last weekend too. I’ve always thought that these meet-ups are a good idea, they give you somewhere to talk freely and feel safe, as well as being part of a community that understands and doesn’t judge because they’ve been there. I know they’re not for everyone but I enjoy it.

In other news, I saw my surgeon last week and he’s very happy with how I’m doing. He said he doesn’t want to do anything now for at least another year, which is fine by me (two surgeries is more than enough for this year, thank you very much). He said I’ve got three options though; 1) I can have my stoma closed and try the jpouch again, 2) I can have my jpouch & rectum removed, a permanent end ileostomy formed and have a barbie-butt, or, 3) I can stay as I am with jpouch & rectum intact and loop-ileostomy. I am quite content to stay as I am for now, but eventually, I will want to go for option 2; permanent stoma and barbie-butt. I don’t want to go back to the jpouch because not only is it ulcerated, but I still have the perforation near the entrance, both of which make me not want to risk it failing again and having to have yet another surgery. I could stay as I am indefinitely but I think I’ll always feel like it’s not finished and I just want this to be sorted once and for all.

So, that’s it for now. Work is going well and I feel able to do more things and for longer. My appetite has returned with avengence so I’m eating like a horse at the moment. My weight is very slowly increasing so all good from where I’m sitting.

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!

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.

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.

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.

Surgery school done!

So, I survived surgery school. For those of you who don’t know, it’s an optional, pre-surgery casual group meeting with several nurses and hospital staff who go through what to expect after surgery and how best to prepare for surgery. I knew most if what they had to say but it was nice to go anyway because they gave out leaflets on ways to be more active along with some (not 100% relevant) dietary advice. I spoke to the nurse during the break and she said she’ll get the dietitian to give me a call later this week. Overall, this morning has been pretty good. Now, it’s off to work for the afternoon.