Stoma wise; It’s been a month where body changes have contributed to my stoma changing too. When they say your stoma changes over time, I sort of thought, that it can’t be that much, it’ll be marginally but mine has changed a lot. In fact, so much so that I’ve moved up to the next cutting range on the bags I currently use. I’ve also experienced some bleeding from the edge due to me poorly assessing my size so my bag fits comfortably. This explains a few things that have been happening these last couple days but now that I have been actually assessed – thank you to my fab SCN at work! – I feel calmer, more confident and we have a plan of action. It means changing some products and then adjusting my prescription but that’ll be next week’s task. I am finally feeling comfortable so I am much happy.
IBD wise; I’ve been dealing with pain A HECK of alot of the time. Some times it can freeze my brain from working, other things I go abit manic and overdo things. It’s been hard getting the pain controlled with emdicaito and activity. But I think we finally have a balance that I can learn to deal with. I don’t expect my surgery this spring to completely fix my pain issues and I will need to be reviewed a couple times in 2019 with the pain clinic. It’s just alot to adjust to. Chronic illness is not always a level or fair playing field. But my IBD is being controlled – somewhat subpar to what is really needed – but I don’t want to change anything too much if I have surgery. I came off Vedolizuamab before my first surgery and didn’t go back on to it after and had a heck of an awful three months post op. Not all of it was down to being not medicated but it certainly contributed.
Advocacy wise; I have been blogging as normal but I feel sluggish. January gives me both hope for new starts but I find it hard to completely start fresh as I am always dealing with the end of the previous year. Plus, not much else but moaning about suffering at the moment with me. I know I should share when it’s bad but it’s finding a way and time / energy t0 do so. I promise to make more effort but my self care has been a bigger priority.
Life wise; the house is now filled with the madness of a fluffy kitten so yeah, it’s been a weird month with all of that. I have found it sometimes hard to cope with another thing that needs my attention but I am getting better. I figure I need to keep trying instead of just stopping. As with most things, there is no short cut or a way around, I must go through it all. and that is true for so much right now. We have a new bed being delivered, we have some days off coming up and January has been a cold and windy month so we have hibernated. It has been needed but I also need to balance that with being outside too.
Here is what I wrote about in January:
- Surviving the Winter with an Ostomy: A Guide
- The Digestive System: Part I
- Life Lately | The ‘Final’ Step
- The Digestive System: Part II
- The Digestive System: Part III
Until next time,