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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My Infusions aren't "Working" Well i feel like im in remission but the drug levels are really low. At about 3 weeks out from the next infusion and i'm battered. Legs are weak af. Joint aches etc. So i've been put on SubQ self inject.. First one on tues just gone. Really easy, Didn't feel a thing, I'm going to miss my bi monthly hospital visits. Nice couple of hours away from the hustle and bustle of daily life...
 
mattyg said:
My Infusions aren't "Working" Well i feel like im in remission but the drug levels are really low. At about 3 weeks out from the next infusion and i'm battered. Legs are weak af. Joint aches etc. So i've been put on SubQ self inject.. First one on tues just gone. Really easy, Didn't feel a thing, I'm going to miss my bi monthly hospital visits. Nice couple of hours away from the hustle and bustle of daily life...
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Things to try: Mastic Gum, high dose L Glutamine (10-20 grams a day), Tumeric with black pepper (needs the latter for it's anti inflamtory properties to work) and you can just add this to meals. Fish oils and flaxseed oils can be very helpful. Increased use of olive Oil and butter made my UC go away at certain times. All of these oils/fats will line your colon to help it recover. Adding vegetables with high fibre like brocoli and cauliflower helped me calm bouts of UC. I believe they neutralise acid and help things progress through the digestive tract more easily, thus reducing bleeding.

Although it really depends on the reason for your UC. UC is diagnosis but it can have many causes.
 
mattyg said:
My Infusions aren't "Working" Well i feel like im in remission but the drug levels are really low. At about 3 weeks out from the next infusion and i'm battered. Legs are weak af. Joint aches etc. So i've been put on SubQ self inject.. First one on tues just gone. Really easy, Didn't feel a thing, I'm going to miss my bi monthly hospital visits. Nice couple of hours away from the hustle and bustle of daily life...
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What infusion are you on?

I've been flaring since April, any medication seems to only work for a couple of years. In time order since 2003

Steroid oral - now only work in high does
Steroid foams - stopped working
Asacol - stopped working, grains, foams, tablets, capsules etc etc
Azathioprene - stopped working
Infliximab - had a reaction to an infusion
Vedolizumab - Entyvio - Stopped working

Tomorrow I start tofacitinib with a hospital loaded infusion then an injection every 12 weeks, hopefully this works. There's a daily tablet they were trying to get me on but in their view they have other options first that are less expensive and still give options later on so it didn't get signed off.


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ChroniC said:
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.
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This is interesting, I'm convinced that the impact of artificial sweeteners on the body is not nothing.

I'm confident that on balance they're better than necking back lots of sugar, mind you. But in the same vein vaping is probably better than smoking.
 
ANDREW GREEN said:
Things to try: Mastic Gum, high dose L Glutamine (10-20 grams a day), Tumeric with black pepper (needs the latter for it's anti inflamtory properties to work) and you can just add this to meals. Fish oils and flaxseed oils can be very helpful. Increased use of olive Oil and butter made my UC go away at certain times. All of these oils/fats will line your colon to help it recover. Adding vegetables with high fibre like brocoli and cauliflower helped me calm bouts of UC. I believe they neutralise acid and help things progress through the digestive tract more easily, thus reducing bleeding.

Although it really depends on the reason for your UC. UC is diagnosis but it can have many causes.
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Already supplementing with the above, Apart from the Mastic Gum. I can't do veggies when anywhere near a flare as that makes me so much worse.. I'm 95% fixed at the moment its just the drug levels are really low
 
Maccapacca said:
What infusion are you on?

I've been flaring since April, any medication seems to only work for a couple of years. In time order since 2003

Steroid oral - now only work in high does
Steroid foams - stopped working
Asacol - stopped working, grains, foams, tablets, capsules etc etc
Azathioprene - stopped working
Infliximab - had a reaction to an infusion
Vedolizumab - Entyvio - Stopped working

Tomorrow I start tofacitinib with a hospital loaded infusion then an injection every 12 weeks, hopefully this works. There's a daily tablet they were trying to get me on but in their view they have other options first that are less expensive and still give options later on so it didn't get signed off.


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Infliximab mate. All going well just the blood tests coming back showing very low levels so they are hoping the every other week injections may keep the levels up.
Took 5 infusions before i noticed a positive change though so it wasn't an immediate success for me. But the last few months have been ok.. Considering it took 18 months or so to get this under control.
 
Maccapacca said:
What infusion are you on?

I've been flaring since April, any medication seems to only work for a couple of years. In time order since 2003

Steroid oral - now only work in high does
Steroid foams - stopped working
Asacol - stopped working, grains, foams, tablets, capsules etc etc
Azathioprene - stopped working
Infliximab - had a reaction to an infusion
Vedolizumab - Entyvio - Stopped working

Tomorrow I start tofacitinib with a hospital loaded infusion then an injection every 12 weeks, hopefully this works. There's a daily tablet they were trying to get me on but in their view they have other options first that are less expensive and still give options later on so it didn't get signed off.


​

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How long after you were on vedolizumab did it stop working? How were you aware it stopped working? Pains in the stomach or other issues?
 
ColdAsIce said:
How long after you were on vedolizumab did it stop working? How were you aware it stopped working? Pains in the stomach or other issues?
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Couple of years, infusion in hospital then self administered pens every two weeks. Symptoms just crept back in slowly after a couple of years then it was like I want taking it.

Been flaring since April lost 6 stone, spent a month not eating and then two weeks in hospital.

This morning had the new treatment but again they are saying 12 to 16 weeks before it might start working
 
I've been approved for the apparently better Risankinumab as a change from Ustekinumab and have my first infusion on Tuesday...They only gave me a few days notice but I wasn't going to decline it. Will arrange work around it. Dreading the immediate side effects or potential adverse reactions. Infliximab used to tire me out and make me short of breath.
 
So, my wife just got diagnosed with Crohns

She was diagnosed with Sjogren's syndrome (related to lupus) in 2019 and our immunology consultant at the time did mention that it isn't uncommon for people to have a secondary autoimmune condition develop after it.

In 2023, the symptoms started to show somewhat (although at the time we wondered if it was some form of food allergy, etc), and a colonoscopy a few months ago confirmed it.

I know this condition CAN develop, but her symptoms seem to be relatively minor, the consultant believes this may be because she was already on immune suppression therapy because of her Sjogren's syndrome.

At the moment she is on Pentasa and her symptoms are fully under control.

I have been a member of the OCUK forms for several years and did see this thread pop up now and again but never thought I would be contributing to it.

Not being based back home in the UK and being in India, I am sure our experiences will be different with the care she receives, but fingers crossed.
 
mattyg said:
Already supplementing with the above, Apart from the Mastic Gum. I can't do veggies when anywhere near a flare as that makes me so much worse.. I'm 95% fixed at the moment its just the drug levels are really low
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My Mum and Dad swear by the mastic gum for curing their UC. I'd give it a shot. My Dad got better quicker results than my Mum by mega dosing
 
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