World IBD Day

Today is World IBD Day and I wanted to share a few things (treatments, symptoms ect) about living with IBD that I have personally experienced.

Symptoms of IBD that I have had include stomach cramps, fatigue, diarrhoea, constipation, weight loss, partial blockages of the small bowel, dehydration, blood in my stool and muscular cramps in the abdomen. I haven’t had all these symptoms at once (thankfully) but I have experienced them all in some capacity and in various combinations.

Treatments I have tried for my IBD include a lot of medications as well as surgery. I have been on anti inflammatory (mesalazine), steroids (prednisolone), immuno-suppressants (azathioprine, mercaptopurine & infliximab), anti-ulcer (omeprazole), antibiotics (co-trimoxazol), meds for bile salt malabsorbtion (colesevelam), as well as vitamin/mineral supplements (folic acid, adcal-d3 & colecalciferol). I have also been on fortisip nutrient drinks and (as of this week) modulen which is a complete nutritional replacement drink.

Other treatments (for lack of a better term) would be surgery. I had my colon removed about two years ago and a temporary end ileostomy (stoma) placed. Although many would assume this has “cured” me of my Ulcerative Colitis, removal of the affected organ sadly does not cure an auto-immune disease.

Side effects of these many treatments are numerous. From the medication alone I suffered with bloating, insomnia, loss/increase of appetite and weight gain/loss. The surgeries came with there own set of side effects which included muscle spasms in my rectum and abdomen, partial blockages of my small bowel, strictures (narrowing of the gut) and ulcers from infection. I also suffered with a case of ileus which is when the muscles that move food through the gut slow down, causing the bowel to effectively stop working for a time. This happened after my second surgery to form my j-pouch and took about three-four weeks to heal. Treatments for it included an NG-tube (a thin tube that goes in through the nose and down the oesophagus into the stomach to extract food and other waste that can’t move into the small intestine), and TPN (Total Parenteral Nutrition – another form of liquid nutrition that is fed via a PICC line (Peripherally Inserted Central Catheter) that goes in through a main line in the upper arm and ends somewhere near the heart).

I think out of all the things I listed here, ileus was the worst. It came on suddenly after surgery and meant I wasn’t allowed food for almost a month. It started with vomiting and my stoma stopped working (meaning nothing was passing through my gut). This is when they inserted the NG tube. They had to replace it once but it stayed in for about two weeks to clear out my stomach. In the meantime, they inserted the PICC line (which can be left for several weeks or even months) and started me on TPN. Eventually, when the NG tube wasn’t bringing anything else up, they removed it and after a couple of days, allowed me to try soup. When that stayed down, I was allowed to try soft foods and, eventually, I was back on normal diet and discharged from hospital after almost four weeks. This is the longest I’ve had to stay in hospital and I hope to never experience it again.

So, there you go. I know it’s a long post but I thought it would be worth sharing as people so often underestimate the impact of IBD on a patients life.

Another update

I’m going to home today! I’ve got two weeks of Modulen, to be assessed after that and potentially continue for a further four weeks, when I’ll have another flexi sigmoidoscopy to see if the ulcers have gone from my small intestine.

They still don’t know if it is Crohn’s or not but my GI is about 90% sure it’s not due to how suddenly it came on and how quickly I reacted to treatment. He said it’s “more likely to come back as inflammation of the small bowel”.

My dietitian said that if it comes back as not Crohn’s, then I can move onto Fortisip drinks instead. The liquid diet will be gentle on my gut as it heals while still giving me the daily nutrients I need.

Apparently, UK GPs don’t like non-Crohn’s patients being put onto Modulen because it is so expensive. That’s why she’s given me two weeks worth from the hospital so that they don’t need to involve my GP yet. Fortisip is cheaper and not specifically targeted at Crohn’s patients, so my GP shouldn’t mind doing a prescription for those if needed.

Hospital update

I spoke to both my GI and surgeon yesterday and my GI again today; they’re still not sure what this is. My stool test came back negative for infection which has left them a bit baffled as to why I’m responding to the IV antibiotics. They suspect it could be Crohn’s but they won’t know until my biopsy results are back.

So, the plan for now is to stop the antibiotics and observe while starting me on modulen tomorrow. If, like me, you have never heard of it, modulen is a nutrition replacement drink that comes in powder form. It’s used to treat children with Crohn’s but they have started giving it to adults more as well. It’s apparently good for small bowel inflammation and most people use it for a few months to give their bowel a rest.

Currently, I am on Fortisip drinks for the rest of today but I don’t know if I’ll have anything else. I had cheesey potato and leek soup earlier and ice cream but I have a feeling I won’t get that again this evening.

Hopefully, I’ll fine out more tomorrow.

So much for a fresh start

So I started my new job Tuesday last week and everything was going great; the people are really nice and the work itself is interesting. Then I had lunch and I started getting cramps in my stomach bad enough to stop me moving. Thankfully, I was shadowing people so it didn’t disrupt my work. However, when I got home, the cramps got worse and I threw up my dinner. I continued to have cramps and vomiting all night and the next day I was sent home from work as soon as I got in. I called my stoma nurse, as they are who I had been told to call in these situations, and they advised I call the IBD helpline (which I haven’t needed for years).

The thing with the helpline is they call you back the next working day so all I could do was leave a message. Come Thursday, I get a call around midday and the nurse, after hearing my symptoms and taking to my GI, tells me to go to the Same Day Emergency unit at my local hospital. I do and they take bloods which show my inflammatory markers were sky high (over 200 where the normal levels are meant to be around 5). They also book a CT scan which I had that night and it showed inflammation in my small intestine. From there, I was admitted and moved to a ward. I saw both my surgeon, another surgeon, and my GI. All of them suggested infection possibly linked to my earlier surgery in March.

They started me on IV fluids and antibiotics (as well as oralmorph for the pain). On Friday, my GI ordered a stool sample be sent the same day (I’m still waiting on the results of that) and once I did my part, I was moved to a sideroom as its hospital protocol to do so with patients who have loose stool and possibly have an infection.

This morning (Saturday) I had a flexi sigmoidoscopy which showed lots of ulcers in my intestine and a few in my pouch. They said there’s a chance it could be Crohn’s but is more likely an infection. I’m still on strong antibiotics so it’s a case of waiting to see what happens.

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.

Travelling with a J-Pouch

I went on my first long train journey (about 5 hours) since having my j-pouch yesterday. It envolved a lot of changes and I was a bit worried about possibly needing the bathroom whilst rushing to get a train. Thankfully, I don’t really need to use the bathroom much during the day where as when I had my bag, I’d need to empty every few hours. I got hungry halfway as I’m used to eating four times a day now but I forgot to bring any snacks so we had to buy food at one of the stations (which was not cheap). The journey was surprisingly pleasant though, despite being hungry, and I’ve learnt to bring food whenever I’m going on a long journey.

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.

First day back!

I returned to work today. I’m starting slightly later but otherwise doing normal hours for the time being. My hours will likely go back to full time next week but it’s not long until I finish there and start working at the local hospital. I’m a little nervous about starting a new job because of my UC and recent surgery but at the same time really looking forward to it. (I’m going to do a post about starting a new job with chronic illness later).

Anyway, back to today; today went really well. We weren’t too busy so I was able to take it easy. I was able to stand longer than I thought I would so that’s a bonus, and it felt good to be getting back into the swing of things. I’m very tired now but not more than is normal for me.

As for how my general recovery is going, it’s going pretty well. My stomach is still swollen, particularly around my wound, but the wound is looking more like a scar and less like I’ve just had surgery. I don’t need to keep a dressing on it now which is great because I have a slight allergy to the adhesive. The skin where my ostomy bag used to sit is super itchy at times but e45 cream works to cool it down.

Four weeks later!

Yesterday was the four week mark since having my stoma taken down and my life with a j-pouch began. So, how has it been? Different is probably the best way to describe the last month for me. I’ve had good days and bad days. On the good, my pain levels have been pretty low and I’ve had a decent appetite which hasn’t caused discomfort when “going”. One bad days though, my pain has spiked and bathroom visits haven’t exactly been pleasant.

I’m taking paracetamol and codeine twice a day at the moment but sometimes I need ito take it more. I take it mostly for my stomach than anything else because occasionally I’ll get cramps which I’ve found recently happen just after eating. They pass soon enough but sometimes it gets a bit too much. Another thing I’ve notice happening this week is mild pain in my legs during the night and after walking around for long periods. I hope that’s not a DVT thing but I’ll be keeping an eye on it and talking to my GP if it continues.

Lastly, I’m due back at work in a week which, at the moment, I’m feeling quite positive about. I want to get back into a normal routine so the sooner I get back to work, the better. I’ve only got a month left with my current job before I leave though as I am starting a new job in May. I’ll be doing a separate post about starting a new job with IBD later so keep an eye out for that.

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.