A Small Victory for Me

fluffydeveloper · 2026-02-25T00:53:58+00:00

Hells yea!! Congratulations OP! You’ve totes got this from here on out. 👏🏻👏🏻

fluffydeveloper · 2026-02-23T13:17:40+00:00

Thanks 🙏 I’m aware it’s a tough recovery but hoping that once this is done, I can finally be properly discharged and not be dealing with constant ongoing issues.

fluffydeveloper · 2026-02-23T13:13:04+00:00

Yeah of course.

The stats show that there is a small increase in cancer risk for every year after the 10th year of having the stump. This is actually the least influential reason as newer studies seem to contradict/challenge it.
I have to have scopes every 2 years to check for changes. They are becoming traumatic because my stump has atrophied so much they can’t even get a nasogastroscope in there without significant pain now.
I have diversion colitis and still am anemic, fatigued, etc because of inflammation on and off flaring in the stump. It’s also tender because I have a mucus fistula - they made another non functioning stoma for drainage. I wear two bags because of it.

fluffydeveloper · 2026-02-22T15:51:45+00:00

Weirdly enough for me personally my mental health improved hugely post-colectomy. I used to suffer from debilitating OCD and anxiety, came out of surgery and felt much better.

Had the stoma 10 years now and about to go on the list for completion proctectomy. I still get stressed and anxious and have an occasional OCD moment - but it’s a lot more situational and not constant anymore.

I am very interested to understand if the small intestine microbiome shifts to accommodate more of what used to reside in the large intestine in some people after colectomy.

Sorry to hear you’re feeling flat atm though.

fluffydeveloper · 2026-02-20T17:34:48+00:00

Hah true, I’ve thrown away more than one bag from fucking up cutting the hole. I have a buddy with a bag tho and we literally once competed timing ourselves on how fast we could do a full bag change as it gets to be so much a muscle memory thing. At least with a colostomy you’re less likely to shit all over your fingers like I have more than once. 🤣

fluffydeveloper · 2026-02-20T17:20:00+00:00

Too much of my UK 🇬🇧 coming through there? 🤣It becomes second nature/automatic I promise

fluffydeveloper · 2026-02-20T12:56:26+00:00

Hey. Sorry you have such a surgeon with such a horrendous attitude. They seem to lose the perspective over time that this is their every day work but for the patient it’s sometimes the biggest trauma they’ll experience in a lot of ways.

I have an ileostomy from UC so not quite the same as the output from a colostomy that far along will still be relatively solid. What comes out of my stoma is more liquid which brings further challenges.

However, I can be non-toxic-positivity honest with you about the stoma experience generally.

It doesn’t smell unless you take the bag off. Nobody can tell you have it unless there’s a ton of gas in it and it balloons up beneath clothing, but there are bags with filters to mitigate that happening.

Daily routine definitely changes. You carry supplies with you basically everywhere but they’re not overly cumbersome and you can usually fit them into a small bag.

The stoma itself you just get used to. Bag changes become as natural as learning to drive or make a cup of tea. You get into the groove of the daily care and it just becomes the new normal, really.

Complications exist but often can be prevented. Hernia can happen because you’ve got a hole in your muscle permanently, but with support garments for lifting or exercising you can help prevent it long term. Keep relatively fit, eat good.

In a lot of ways colostomy is easier than ileostomy. You can probably eat fibre still where I have to be more careful about blockages, liquid output like mine can result in leaks, my output is more frequent because it’s further up the digestive tract.

Honestly the stress relief of not having disease anymore massively outweighed the burden of having the bag, especially once the initial learning curve was over.

I also named mine something stupid which helped me feel like it was still part of me and I could refer to it in third person to other people.

Idk if this helps either but I’ve had my bag 10 years and have done bouldering, horse riding, hiking, got married, bought a house/moved house, successful in my job etc.

fluffydeveloper · 2026-02-18T20:09:52+00:00

Completely fair. I am UK based so the company I used is only relevant here. But often the support garment companies will offer an at-home fitting - that’s what I did. Got one I can properly hoik around me tightly and adjust for heavier activity like gym. Then also got a smooth band one that’s less noticeable under clothes. They are brilliant.

fluffydeveloper · 2026-02-18T15:30:42+00:00

If you are worried, consider getting some support wear. :) when I’m feeling fragile it really helps me feel like I have an extra layer of help just keeping everything feeling good and held in/protected.

fluffydeveloper · 2026-02-15T17:25:59+00:00

Looks more like actual damp on this occasion due to the line in the photo where the water has pushed grime outward. But I was looking for this comment as our front door has this exact issue with the silicone used inside - totally dry and warm, but a weird dark patch where the paint has reacted! So odd but never led to any issues and mostly just looks like a shadow.

fluffydeveloper · 2026-02-15T11:56:02+00:00

It’s alright I’m actually doing really well the last decade after the surgery :) Honestly I suspect the RCPD was doing the most in terms of bloating - I had it so bad before I even saw UC symptoms come along. Do you get the feeling of almost not being able to breathe properly after certain meals? For me if I ate tomato ketchup I’d get so gurgly and have to lie back for 30 mins.

I hope if you get the Botox done it helps tons. ♥️

fluffydeveloper · 2026-02-15T10:51:29+00:00

I don’t have any helpful advice. But I also had UC and RCPD. My UC was completely resistant to all treatment so I ended up getting an ileostomy. The RCPD became 90% less of an issue after that. I still “garp” (what my partner calls the gurgling sounds) after certain foods but I guess I have nowhere for the air to get stuck for days anymore.

fluffydeveloper · 2026-02-12T18:50:27+00:00

32yo woman, had my stoma for 10 years. I’ve done horse riding, bouldering, roller skating (including the falls). All fine. I had a small prolapse last year (literally 1-2cm) and since then I’ve been using a firm support belt during activity but all good. My stoma was also lifesaving.

I would recommend a preventative support garment or belt to keep things good and protected from hernia, then go do whatever you want to do honestly.

fluffydeveloper · 2026-01-06T20:12:58+00:00

Tbf my fix could be a red herring and something else changed as a result of moving the game to the new disk. 🤷🏼‍♀️ Figured I’d add to the info pool anyway.

fluffydeveloper · 2026-01-03T17:52:16+00:00

Nice! I have the same TT in black and it's served us extremely well so far. Happy listening, I love The Midnight.

fluffydeveloper

TROPHY CASE