@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.

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.

This Saturday will mark four months since my surgery. I am pleased to report that I am feeling much closer to “normal”-me than I have all year, despite thinking that I never would, at first. I’m able to eat a lot more than I could before with few exceptions, sleeping has become much easier, and although I do get the occasional pain about the middle, there are times when I can forget I have baggie. I do find that bending and stretching can be a bit uncomfortable at times, and I can’t run much, but I am back to my usual walking speed (so, no longer at escort-mission speed). I know I have a ways to go as I am still adjusting to living with baggie, but I don’t feel quite as overwhelmed anymore.

I tried to use a plaster to hold the edges down but it didn’t really work too well; it stuck to the bag fine but didn’t stay stuck to my skin for long due to it’s placement (partly over my naval) as well as the heat. I just changed the bag the next day and the new one seems to be staying put. I hoping it was just a one-off.

Quite proud of myself for making it to and from town on my own and without my stick. I did a bit of clothes shopping for tops/dresses that would go nicely over my bag, found these two tops but decided to go for just the flowery one. I might go back and get the green later because it’s really comfy.

Dansac Novalife convex vs SenSuro Mio convex

So, I was having trouble with the flat SenSuro Mio bags where they would start to leak after only a days wear. I saw my Stoma nurse and, after looking at my stoma, she decided I would benefit from using a convex bag as my stoma had shifted and was now leaning to one side, meaning all the output was going onto one part of the bag and eroding it much faster than it was meant to.

The skin around my stoma was a little irritated which my nurse said could be because of the adhesive, so she gave me some samples of who different bags; the Dansac Novalife and the SenSuro Mio convex. I tried the SenSuro Mio first to see if it was the adhesive that was causing my skin to be irritated. We don’t think it was because it’s no longer as itchy or red when wearing the SenSuro bags so it was likely a combination of a heat rash (we’ve had a mini heatwave recently), the adhesive and the leakage causing my skin to become inflamed and itchy.

The bags themselves are much like the flat ones except they are a little heavier and stick out a bit more than the Dansac bags. They did take a little getting used to as well, as they have four little loops which you can attach a belt to if needed. Also, because the convex part is a lot thicker, it does sometimes look like there is a tiny bit of leakage when really it’s just a shadow. Other than that, I found them very comfortable and they seem to muffle any stoma noise quite well.

I’ve also tried the Dansac bags which, at first, I liked. However, after a little while, it became clear that they weren’t as good as the SenSuro bags. Don’t get me wrong, the adhesive is fine, it doesn’t irritate my skin and comes off easily, and the bag itself is very light. However, the opening is really weird; instead of having an extra bit on the underside of the bag, it just has an opening at the end with both sides being the same length. This made it harder for me empty without making a mess. Another thing that I didn’t like was that when the bag gets full (like at night), it doesn’t keep its shape as well as the SenSuro bags do and feels like it’s pulling on the skin a lot more than the SenSuro.

Overall, I prefer the SenSuro Mio Convex bags so I’ve asked for my prescription to be changed to them now.

I saw my stoma nurse this afternoon and it seems I’m having a slight reaction to the adhesive of my ostomy bags. This could be to do with it getting much warmer recently so it may be a heat rash being irritated by the adhesive.

Also, she believes the reason I’ve had several bags in a row leak is because the opening of my stoma has shifted from top-centre to top-right so when it does it’s thing, the output is all going onto the same patch of bag which was causing it to corrode away faster, leading to it leaking. In order to combat this, I’m trying new bags. These ones look the same but they have a bump on the back that pushes into my tummy slightly in order to keep my stoma “upright” so when it’s active, the output should be a bit more even. I’m trialling two different types; the other ones has the same bump but has a different adhesive. It feels a little weird at the moment but I’m sure I’ll get used to it. I hope this solves the issues.