How strange! Congrats though, J pouch?
I had the surgery talk but it absolutely terrified me. He was very graphic with complications and 3hats involved!
Crohns / ulcerative colitis sufferers
- Thread starter ColdAsIce
- Start date
How strange! Congrats though, J pouch?
I had the surgery talk but it absolutely terrified me. He was very graphic with complications and 3hats involved!
Nope permanent ileostomy. Got to go back at some point and have my butt removed…lol..
Mine was emergency as large doses of steroids did not bring it under control and my body was going into a bit of a meltdown. I had tried all avenues before nothing really worked. Tbh surgery was not that bad and having the ileostomy has really given my life back. No more constantly needing the toilet or cramps and bleeding. The hardest part by far has been getting off the steroids and dealing with the issues of long term steroid use.
Don
I only take loperamide too. Jpouch in 2006 ish. Have had to go back in 3 times to 'widen the join' between pouch and rear end. Haven't even been for a check up for about 6 years, one been very fortunate with it all as on late.
Soldato
Does anyone else hate this time of year, food-wise? I have a large appetite and poor self control, and always end up feeling like crap at Christmas. Made all the more difficult by lactose intolerance.
Soldato
Had my booster last week (3rd dose) but only after booking it via the NHS website.
When the original vaccine was rolled out, I wondered if I would be prioritised as I'd just came off a course of prednisolone but I never heard anything.
When the original vaccine was rolled out, I wondered if I would be prioritised as I'd just came off a course of prednisolone but I never heard anything.
Soldato
If you're just lactose intolerant then you might want to try some of these https://www.naturesbest.co.uk/probiotics-digestive-aids-fibre/super-strength-lactase-9000/ . After I found out a few years back that I had become intolerant over the years (coming up to 20 years since diagnosed) I have used the Natures Best supplements without any issues. I first used the Holland and Barrett equivalent but they are a gel type capsule and when they made them vegan friendly, the became a little slimy and, in my opnion, are a little less effective compared to the Natures Best tablet version.
As for boosters, I had my third back on 23rd October and suspect that I will be called up for the forth in due course. Also received the email and PCR kit a few days ago.
Soldato
Thank you. When do you take it? My strategy is pretty simple: don’t eat anything with milk in!
Don
I don't mean to spark any crazy conspiracy talk, but has anything else seen the film Dark Water? Suggests strong links between UC and Teflon/PFOA..
My brothers partner has just been diagnosed with this.
The first I had heard of her suffering was last month but had started just after the birth of their second child who just turned one.
She had lost a fair bit of weight due to it and was down to 7 stone, She has always been tiny.
They said her case is pretty urgent and have been filling her full of meds which appeared to be helping but I think it has flared up again the past week.
The first I had heard of her suffering was last month but had started just after the birth of their second child who just turned one.
She had lost a fair bit of weight due to it and was down to 7 stone, She has always been tiny.
They said her case is pretty urgent and have been filling her full of meds which appeared to be helping but I think it has flared up again the past week.
Soldato
I haven't, however I am fairly sure taking roaccutane (isotretinoin) caused my UC. There's a lot of information online that shows a link between the two, and I believe the manufacturer, Hoffman La-Roche, actually lost a few lawsuits regarding it.
I can't help but think something environmental causes ulcerative colitis. A lot of people think it's diet related but I can't help but think it's something more indirect that affects the immune system as a more fundamental level, such as a virus / string drugs.
Really, really glad to hear that mate. Must have been incredibly liberating.
I've always said steroids are the best and worst drug in the world. They absolutely brought me back from the brink, but it took 18 months to get off them and they've permanently affected me.
Congrats on being on well, good luck with the bum removal (
) and Merry Christmas!
Soldato
Really, really glad to hear that mate. Must have been incredibly liberating.
I've always said steroids are the best and worst drug in the world. They absolutely brought me back from the brink, but it took 18 months to get off them and they've permanently affected me.
Congrats on being on well, good luck with the bum removal (
Steroids are brutal. They are such a wonderful nder drug but I wish I understood the side effects of them when I was younger. I probably had 8 or 9 courses if them between the age of 17 - 21 and it took me about 3 years of not taking them before I felt relatively normal again. What long term effects do you have from them?
I also have an ileostomy now and I genuinely can't recommend it enough for people suffering from badly controlled ulcerative colitis. I'm nearly 2 years out from surgery and it still amazes me that I can go for hours and hours without needing to worry about toilets and urgency. I look back and I'm gutted that I didn't have it sooner as I could have crammed so much more into my life.
GERD, gastritis, osteopenia, thinned and weak skin, weight that took years to shift. I often wonder if it triggered some of my newer illnesses like pancreatitis and fibromyalgia too.
Like you say, they're a wonder drug, but I really wish I'd known what I was getting into, and they'd done more to get me off them sooner.
So nice to read your story fella. If that's your only regret you've done well!
Like you say, they're a wonder drug, but I really wish I'd known what I was getting into, and they'd done more to get me off them sooner.
So nice to read your story fella. If that's your only regret you've done well!
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Yeah steroids are great but long term they really screw you over. I get all kinds of problems with my back and may need surgery in the future to fuse parts of it together if it gets worse. My nerves are shot I’m always getting dead hands especially at night and nerve pain in my right leg. My Endocrine system took a while to fire up fully but luckily it seems it’s one part of me that’s running ok now…lol… Oh and the affects they had and still have on my PTSD & Anxiety are quite extreme definitely made them a lot worse. I’m also now really sensitive to any new medication or medication changes.
I’m still to have a covid jab I’m not anti-vax but more worried how they will affect me in general especially the mental health and only recently being fully of the steroids. You have a pretty high survival rate with covid a flare of PTSD the odds are far lower.
Other than that I’m all good..lol. Tbh I’m much better than I was when the U/C was in full swing. I can at least do things now and waking without cramps or running to the toilet is amazing. I had forgotten what it was like to get up slowly.
I can also since surgery eat pretty much anything I want and I have definitely put a lot of weight on as I missed the food over the years. The stoma Nurses are always amazed that someone with no large bowl and a fair chunk of small intestine missing can put on so much weight. I’m sure it’s partly the steroids but mainly I’m just loving eating properly for the first time in 12 years.
I’m still to have a covid jab I’m not anti-vax but more worried how they will affect me in general especially the mental health and only recently being fully of the steroids. You have a pretty high survival rate with covid a flare of PTSD the odds are far lower.
Other than that I’m all good..lol. Tbh I’m much better than I was when the U/C was in full swing. I can at least do things now and waking without cramps or running to the toilet is amazing. I had forgotten what it was like to get up slowly.
I can also since surgery eat pretty much anything I want and I have definitely put a lot of weight on as I missed the food over the years. The stoma Nurses are always amazed that someone with no large bowl and a fair chunk of small intestine missing can put on so much weight. I’m sure it’s partly the steroids but mainly I’m just loving eating properly for the first time in 12 years.
Soldato
I tend to take one about ~30 minutes before I know I am going to eat something with milk in it. I did the ulimate test (for me at least) back in the day and had a McDonalds chocolate milkshale and was fine. It's of course no guarantee but I'm pretty much fine with most foods with milk or lactose in them now.
Soldato
Ah that sucks. I definitely have much thinner skin than I used too and gained quite a few stretch marks around my waist and annoying fat that won't shift, even though I'm slim. I also remember the hideous indigestion and Gerd when on them. I actually forgot about that until you mentioned it.
How many courses of pred do you think you have been on since being diagnosed?
I hear you regarding the food. I still can't believe that I can eat food and not feel ill for days afterwards. Even when I was 'well' with UC, looking back I still was far from normal.
Christmas used to be a terrible time with UC as I'd always eat everything and regret it massively afterwards. This year I've piled on the pounds as I'm just ploughing the all sorts of food.
It also great to be able to eat stupidly spicy stuff without issues. It's one of the main reasons why I don't fancy a j pouch, as everyone I know who has one really has to avoid spice.
Don't take this the wrong way, but it actually feels good to know I'm not the only one! In terms of number of courses; they didn't manage it well, perhaps because I was in such a state. I was on and off pred about 5 times, then for months, they couldn't get me off them. They moved me over to Budesonide (frazzled my brain) and then Beclametisone (best steroid for me by far). I actually did a stint on steroids for over 18 months without a break, it was rough going.
What got me off them was that surgical consult I mentioned, it terrified me. Vedolizumab had improved things but not enough. I was at the nothing to lose stage, so I went back to the drawing board on diet, ignoring the advise that hadn't worked for so long.
I introduced foods one at a time, that were anti-inflammatory and nutrient dense, even if it was meant to be harder to digest or unsuitable for IBD; I selected what worked for me. Once I had something workable, I introduced a few suppliments.
After about 6 weeks I finally managed to taper down and stay down, and after another 2 to 4 weeks I was off steroids. Great feeling. Never been on them again, and never will.
The only way I could get off prednisone was to swap to a much higher dose of hydrocortisone then slowly taper it down. I could never get below 5mg of pred without becoming unwell mainly mentally but also feeling pretty rough too. I was 3 years on steroids this last time constantly and on and off for 10 years before that. Steroids are great for short term doses to bring a severe flare under control but if you get stuck on them it becomes a bit of a nightmare and getting off them is a hell of a battle with lasting side effects all over the body.
MRI of small bowel came back normal, I'm told i've got Crohn's because of colonoscopy biopsy showed "microscopic colitis, scattered granuloma, chronic inflamation" is it possible that it's UC instead of Crohns?
Still waiting since August to see a specialist
Still waiting since August to see a specialist
Possible, sounds rather mild either way if there was nothing seen on either the colonoscopy or MRI but just evidence of inflammation on the biopsy.
Crohn's can affect the large intestine too though so you'll have to wait and see what the consultant says, I have Crohn's and had similar results from a colonoscopy btw, picked up granuloma on the biopsy afterward but everything looked clear/fine during the procedure. Though I also had strictures seen on the small bowel MRI which was the main issue for me they've since been removed by cutting away that section of small bowel, not had to have a bag or anything like that so quite happy with the result, can barely even see any scars from the operation.
I mean it's gotta be reassuring at least that your small bowel seems normal, they could stick a pill cam down there now without worrying about whether it would get stuck but I guess if they're happy with the MRI then maybe no need.