What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

Ostomy leaks and samples!

When I first got my stoma, I tried a couple of different bags, and ultimately settled on Coloplast’s Sensura Mio. As I gained the weight back that I had lost due to surgery, output began to creep under the baseplate, because my stoma was created at an old stoma site, so it sits in a dip. The Sensura Mio is available in three convex levels; Soft, Light and Deep. So, I ordered some samples, and the issue was immediately fixed with the soft convex.

I was pleased when I continued to gain weight because I hadn’t been happy with how slim I was for years, but a couple of months ago, I began experiencing leaks again, which I think was due to the additional weight gain, which ultimately deepened the dip even more.

I had been thinking that I probably needed to start considering my diet anyway, so when the leaks started happening, I felt that now was the time. I was certain it had only been the last few lbs, so I figured I could lose those pretty easily. I did, but instead of leaving my abdomen where it had last arrived, it left other places!

The leaks actually got worse because I had reduced the number of carbs I was eating, which usually help thicken my output. Depending on the type of fruit and vegetables, I either have watery output or watery output PLUS pancaking of the actual fibre, so I have that stuck around my stoma, and water at the bottom – doh! So, watery output, pancaking, and a dip a little too deep resulted in constant leaks, and I began feeling really frustrated with it.

I ordered some samples to try and stop the leaks, as my skin was getting burnt and sore. I need to let my stoma nurse know what I have tried anyway, so I figured I’d also blog about my experiences.

I ordered samples of:

Brava protective seal – for the dip.

Brava paste – for the dip.

Brava lubricating deodorant – for the pancaking.

Brava barrier cream – for the burnt skin.

I also think that absorbent crystals such as Trio Pearls may be helpful, to soak up the liquid, but I was having issues ordering samples, so I’m hoping I can sort that with the stoma nurse.

The protective seals didn’t help because they were a little too thick, so the baseplate sat higher up my stoma. I tried putting the seal on my around my stoma and then my bag on top, and I tried putting the seal on the bag before attaching it, and let’s just say, things got messy! The amount of output under the baseplate was worse than ever.

The barrier cream, I ended up using when I was trying the protective seals, so because the leaks were so bad at that stage, I’m not really sure if it was any better than the normal barrier wipes I use. However, I did notice that my skin around the burnt edges was a little less dry, so the moisturising effect was definitely noticeable.

The lubricating deodorant did help with the pancaking, but, output was still very watery so it didn’t prevent the leaks. I think if I’d had the absorbent crystals, and used both together, the outcome may have been different. I read that some people use baby oil which has the same effect, so rather than costing the NHS money, I am just going to pick up a little bottle of baby oil, and hopefully, when I have some absorbent crystals, that will help.

I got the paste out to try a couple of days ago, and realised that the dip now looks like it did before I started having output seep under the flange – congratulations to me for sticking with the diet and yoga! 😊 So, I think the issue must solely be due to my output being so loose now.

I don’t want to go back to loading my plate with carbs, and I suspect that if I did, I’d just regain the weight anyway, and then I’d have two issues to be dealing with again rather than just one. I am seeing my stoma nurse today, and I also have an appointment with my Gastro, so I think the next plan of action will be absorbent crystals and increased loperamide.

Wish me luck!