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.
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’ve had a good start to the bank holiday weekend; I have mostly chilled today, played a couple of games, watched some YouTube videos, but I’ve also done some washing and cleaned the kitchen a little (our kitchen is tiny so it doesn’t take very long), so I’ve been productive without over-doing it. I was going make cupcakes this afternoon but I realised we don’t have anywhere to store them so I’ll leave them to another day.
Me and my fiance are going out with his parents this evening for a meal and to see Reginald D Hunter which I’m really looking forward. Not just because I like RDH, but also because this is the sort of thing we used to do before my health took a nose-dive; it makes me feel closer to “normal”. Although, I do get the occasional pull or feeling of discomfort in what’s left of my gut if I’m stood or walking for too long, these don’t last and aren’t as common now.
So, I finally left the flat and went to a public place today for the first time in over a month! The only places I’ve been to since getting out of the hospital were back to the hospital to collect my meds and to my doctors to have stitches removed. It felt good to go outside and be somewhere that wasn’t medical, and where I could feel more normal.
I had a really nice Eggs Benedict (pouched eggs and bacon on an breakfast muffin) with tea, followed by a chocolate muffin. I am so happy to say that I could eat all that! A couple of months ago I wouldn’t have been able to eat any of it for fear of it causing me major pain and several dashes to the bathroom.
Although this whole stoma/surgery thing has been pretty scary and a bit of a steep learning curve (and still is), I am glad I had it done. I’m no longer in pain after eating, I don’t have to dash to the bathroom (making sure to take my phone because I know I’ll be in there for a long time), and I can eat most foods that I couldn’t before. There are, of course, some restrictions on what I can and can’t eat with my stoma, but nowhere near as many as before.
It’s odd, but this surgery really has given me a new lease on life. I know I’m still recovering and need to take it slow to ensure I don’t overdo it, but I can feel myself improving, if only a little, each day.
Had my stitches out this morning and the nurse said I don’t need my dressings anymore so, aside from my bag, no more annoying things stuck to my tummy!
I’m having some tea and biscuits (I’m not old, I promise!) whilst browsing YouTube and enjoying the sun outside.
I remember being diagnosed with ulcerative colitis in the fall of my junior year and thinking it was a death sentence. Not immediate, but eventual. I remember also thinking that having a colectomy was the worst thing that could possibly happen to me; that any medicine was better than surgery, no matter the side effects, and that I wouldn’t be a complete person without a colon. Which was stupid because a) it meant I made the decision to undergo multiple hospitalizations and endless drug treatments over two and a half years and b) as Clare put it, “whoever said you needed a colon to kick ass was sorely mistaken.” The ostomy bag isn’t forever, and it took a lot of getting used to, and it still weirds a lot of people out, but I consider it another step in the long list of steps that I’m doing an impressive job of conquering. I’d rather have a bag of 💩hanging from my abdomen than bright red blood in the toilet, excruciating pain, anemia, fatigue, weight loss, hopelessness, colonoscopies, infusions, blood tests, and up to 30 pills a day with fun side effects like immunosuppression, anxiety, moonface, weight gain, hair growth, white blood cell loss, osteoporosis, and more. Hey, it isn’t pretty, but it’s what I’ve dealt with and there’s nothing shameful about anyone’s body or what anyone has to go through to get to happiness. So here’s the colitis patient / ostomate body positivity post that no one asked for but everyone secretly needed. Only two more surgeries to go!
Having just been through my first surgery, this was really good to read. I hope to get used to my bag and be back to “normal” before long so I can continue to live life to the fullest!
Stoma check went fine. I didn’t realise they change your bag but they have spares at the health centre. The nurse said my stoma looks healthy and I’m doing all the right things at the moment (eating the right stuff and drinking plenty). My next check up is in two weeks and, provided all’s ok then, I’ll have a check up every month.
Also, I’m having my stitches removed tomorrow morning. I’ll probably be a little soar after so I don’t think I’ll be doing much. I’m having a friend over for a bit later in the afternoon but that’s about all I’ve got planned.
Got my first stoma check-up today. I’m not sure what to expect but I’m sure it’ll be fine.
I changed my bag this morning with no problems and, even though I know I didn’t cut the whole too small because I measured it twice, I’m still paranoid because of what happened Sunday. I know it’s fine because my stoma is making the usual happy noises it does when it’s working so it’s just my silly paranoid brain.
On another note, it’s really sunny outside. I’ve started to go for short walks around outside my flat to build my leg strength up again so it’ll be nice to be out in the sun if only for a little while. I can’t wait to be able to go out for longer; I really need to buy new clothes because I’ve lost so much weight and it’d be nice to get out of the flat for a day. Unfortunately, I get tired quite quickly at the moment so walking around shops is not something I can manage yet. But I will soon, I’m sure. Got to keep positive.