Crohns / ulcerative colitis sufferers

DanTheMan said:
If it's any consolation, I had ileostomy surgery for UC in 2020 and after the initial shock, I genuinely wish I'd had it 10 years before.

It has its moments but it's so freeing not having to worry about where the nearest toilet is. I didn't realise how id compromised my life in so many ways because of UC, until I no longer had the urgency and worry any more.
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Well after 3 weeks in hospital and no improvement, met with the surgeons yesterday and that's the decision I need to make over the weekend. I'm not going to lie the thought of surgery petrifies me.
 
matthewhotdude said:
Well after 3 weeks in hospital and no improvement, met with the surgeons yesterday and that's the decision I need to make over the weekend. I'm not going to lie the thought of surgery petrifies me.
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I was in a similar position. Hospital for 3 weeks, lost 20kg and lots of blood. I think I managed 1 meal and some snacks in the last week before surgery. Steroids stopped working and not enough time for biologics to do their thing.

I was genuinely terrified of surgery but honestly, from the moment I woke up after surgery, I already felt better. Yes it was quite painful but nothing compared to going to the toilet 20 times a day with barely any strength and a drip stand that needed dragging with me each time.

The first couple of months after surgery was a big transition phase but once you find a bag that suits you and you regain some strength, I found it much better than UC. Not having to worry about needing the toilet urgently is such a novelty that will never wear off.

I still eat what I want and do everything I could do before, plus more. It hasn't stopped me in any way.

If you ever need to chat or want any advice, feel free to reach out. There's also loads of good groups and people on social media, which I found massively helpful and still do.
 
I had an ileocecal bowel resection of about 30 cm of my small intestine four weeks ago on Monday. As @DanTheMan says, it was a relief. I was also scared, mainly of how I would feel afterwards and to be honest with you, I felt rubbish for the first three days following surgery until I got home. But from about a week I was feeling relatively normal. The only thing that's still not completely OK is part of the opening they made which hasn't quite healed up yet, but it's nearly there. Otherwise, I can eat everything again and I've had no bowel issues.

I don't have a bag, but if I had been given one, the way they presented it to me made it sounds very much OK.
 
FYI, hidden away (obviously) is WaterSure which caps your water bills if you have UC or Crohns

www.citizensadvice.org.uk

WaterSure scheme – help with paying water bills

Watersure is a scheme to help save money with your water bill, if you get certain benefits and you have three or more children under 19 or someone in your house has a medical condition that means more water gets used.
www.citizensadvice.org.uk www.citizensadvice.org.uk

Edit/ it's an and, so you need to have UC or Crohns and be on benefits

People who have one of the following medical conditions will automatically qualify for WaterSure, as long as they meet all the other qualifying conditions:

Which benefits you need to be on​

The benefits you need to be on depends on your supplier. You should check which benefits they cover.

All suppliers offer WaterSure if either you or someone in your household get one of the following benefits:

  • Universal Credit
  • Pension Credit
  • Housing Benefit
  • income-based Jobseeker's Allowance
  • Income Support
  • income-related Employment and Support Allowance
  • Working Tax Credit
  • Child Tax Credit awarded at a rate higher than the family element
 
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This story is nothing in comparison to the medically diagnosed, but I had terrible guts and an inflated stomach, I did go to the doctor who poked and proded me in unenthusiastically and told me I was fat. I'm really not.

It took my own personal efforts to prove her wrong. I had to starve myself of anything other than rice and chicken (a technique vet and ourselves use on the dogs when they have bad guts)

I then slowly reintroduced things I ate. It seems to have turned out that the diet lemonade that I was drinking regularly caused the issues. It only contain 3 things. Water, sweeteners and citric acid..

I have come to the conclusion that Aspartame is not my friend. I have since seen a lot about sugar alcohols causing issues, but this might be confirmation bias..

Safe to say I don't suffer nearly as badly with the ****'s than I did before.

The irony is not lost on me that trying to be healthier and avoiding sugar actually caused me to get worse.. Thanks government sugar tax..
 
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