Scope Day

I had my flexi this morning. Everything looks normal, no ulcers or signs of inflammation. I’m continuing on the modulen for now but I’m hoping to talk to my dietitian soon and start back on solid foods. I’m still having small amounts of soft foods every now and then as I’m not having any symptoms but I don’t want to overdo it so it’s mostly just yogurt or mashed potato.

Day 8 on Modulen

It’s been eight days since I started the modulen nutrition drinks and it’s not been easy. I thought I wouldn’t care about not eating sandwiches or pizza and that I wouldn’t mind smelling all these foods that I can’t eat, but I was very much mistaken; the smell of cooking roast dinners or take aways is almost torture sometimes because I want so badly to eat it but I know that if I do, I’ll be back in the hospital again in no time. Because part of my small bowel has narrowed due to inflammation (a stricture), I can’t handle solids moving through my gut at the moment. Other than the modulen, I have been able to handle soup but I don’t want to try anything more substantial without guidance from my dietitian and GI. I’m hoping to see one or the other next week (my biopsy results should be back by then) but I haven’t received an appointment yet so I may have to call them midweek to find out what I’m meant to do once my modulen runs out. I hope I won’t be continued on it (or any other nutrition drinks for that matter) and that they’ll say a free-fluids diet for a few weeks. I know I can handle soup without experiencing any pain or other symptoms so fingers crossed.

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.

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.


@thoughtsfromtheam asked,

“Do you mind me asking what surgery you will be having? I had my large intestine taken out in 2015, then had a colostomy while it healed for 6 weeks, then had it taken down. Is that similar to what you are having done. I have a J-Pouch now.”

Firstly, no of course I don’t mind you asking. I am very open about this and am happy to answer questions if I can.

Secondly, yes. I had my colon removed in April 2017 resulting in an end ileostomy. I then had my j-pouch formed with a loop ileostomy in June 2018 and am currently waiting to have that taken down. I hope this was helpful.

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.

Started using OstoGuard barrier cream last week, at my stoma nurse’s recommendation, to help with the itchiness I occasionally get under the adhesive of my bag. I’ve never used anything like this before but I’m glad I have it a try because it’s worked really well so far.