I was diagnosed earlier this year but symptoms seem to have only got worse since then, now they want to put me on Steroids! I was better off before and am seriously wondering if I should just knock all the drugs on the head and see if I can at least get back to where I started.Posted 2 years ago
In my job I seem to speak to lot of people who have UC (part of my job is finding life insurance and critical illness cover for people who have been declined previously, or offered unaffordable terms)
It seems that when discussing the treatment aspect of the issue, the two treatments I hear about that are most successful are Corticosteroids and Surgery (ileoanal pouch)
In fact I would say the only sufferers I ever speak to who report as “symptom free” are in one of those two camps. I’m not a doctor, or an expert by any stretch, but that’s what I have found. And as I said, I speak to a lot of people with UC.Posted 2 years ago
I was diagnosed about 12 years ago but am pretty sure I’ve had it since my late teens, I’ve been on the immunosuppressant Azathiroprine for about 6 years and I’d now say I am as close to ‘normal’ as I can be.
Before the Azathiroprine I was on and off steroids for several years culminating in a solid year on them (I refused surgery as I’d two under 5’s at the time and didn’t think we could cope with me being laid up with surgery and the aftermath) they do work very well but the side effects are awful and have definitely changed me.
Depending on how extensive your colitis is I’d be discussing alternatives to steroids with your consultant if they think you might need to use them for a prolonged period.
It’s a nasty disease but can be managed well so don’t get too downhearted, I’m going on holiday tomorrow but feel free to PM me if you want to chat.
MikePosted 2 years ago
A friend was diagnosed ~8 years ago so you have my sympathy. She’s gone through a hell of a lot of different treatments, some worked, some didn’t. Seems what works for one person doesn’t for another, and some treatments just stop working after a while.
Find a Dr you like/trust and I think you’ve just got to go with it and see what works for you.Posted 2 years ago
Diagnosed about ten years ago with UC. Have been through various medications and currently on combination of melsalazine, Azathioprine, and a biological drug called humira. Previously had some infliximab infusions and at several times have had 12 week courses of steroids.
Are the steroids a short term solution – my experience has been that steroids are used to try and put you in to remission, not a long term fix – my IBD team don’t like people becoming steroid dependent because of possible side effects.
Remember it’s a disease which has periods of flaring and periods of remission. Without knowing all details the steroids sound like an attempt to control a flare that’s getting worse and needs something to try and stop it and put you back in to remission.
The good news is that there seems to be a fair bit of research and regular updates of drugs coming on to the market. It can however take a while to find the right combination.
Do you have dedicated IBD nurses you can talk too and get some clarity on the steroids? Is it short term or long term? What are the options for Azathioprine or are they considering biological drugs (these have been the best for me).
Hope you can get some answers from them and fix up soon.Posted 2 years ago
My dad suffered with this for years. He started on steroids before having two ileoanal pouches. His first surgery was when I was 6 years old, this lasted a while and I think the second surgery was when I was about 15 years old. Eventually the second surgery failed so he ended up having a stoma. Mentally this was the toughest barrier for him but once over this hurdle he was able to live a normal life. He rode whinlatter after the stoma on a fully rigid v braked 90s gt about 5 years ago! He is now in his early 60s and is still a retained firefighter and one of the fittest firemen at the station. As someone said above different things work for different people so different solutions may work for some and not others.
Mum dad was eventually treated by St Marks Hospital in Harrow which have some world leading experts in bowel conditions although I believe you would have to be refferred there by your local hospital.
Posted 2 years ago
I was diagnosed about 5 yrs ago but am one of the lucky ones who does not get it too bad.
When I got it at first I lost nearly 2 stone over just 4/5 weeks while they worked out what it was. Was put on asacolon for about 6-12 months and initially steriods (a foam up the jacksy!). I felt awful coming off the steroids but I had a bad dose and they were needed. Only had about 3 flare ups over 5yrs and usually get it under control fairly quickly with the asacolon. Go for a scope every couple of years and find keeping the weight off, cutting back on the booze(not had a beer or spirits since, just white wine or a cider now) and exercise help me (not scientifically proven, just my feelings). My flare ups tend to happen in winter when I exercise less, drink more and put on weight and am more stressed at work. Never had a flare up in summer yet as I do tend to exercise more and am generally fitter.
A colleague at work has had a much tougher time with it. 2 years in and still not under control. Tried all sorts incl humera with no joy so looking like a bag is needed.
It affects everyone differently, as I said, I am just lucky I guess.Posted 2 years ago
How about Low Dose Naltrexone (LDN)Posted 2 years ago
UC for 8 years, stress was a big part of my condition, went through most of the drugs above and none could control my flares, until I was made redundant from my stressful job, looking back, this was due to all the time I had to book off with the condition.
So I stopped working at a desk, found work that was stress (less) free and active, gardening, park keeper, warehouse Opp, anything agency related that had me mobile. Pay was worse, but my condition became manageable, not had a day off sick in the last five years. The last visit to my consultant, she took me off the last drug I was on and I have been drug free for the last year. I know this might not work for everyone and I understand that this condition varies greatly, not a Dr btw, but stress seemed to play a big part for me.
I used to get joint pain just before a flare, this wasy early warning sign.
Good luck btwPosted 2 years ago
I posted on the forum back in January trying to find out how IBS sufferers got on because I was being told by the doctor it was mostly likely that but due to the ferocity of it they sent me off for the proper tests. I’ve always had bowel troubles and always thought it was that, had been offered tests before but refused because I’d rather bury my head. I had the flexible sigmundoscopy which confirmed immediately that I have ulcerative colitis. I have to say I was fairly devastated because I’d always considered myself lucky in the family to not have anything worse. (Brother has Crohns and cousin has colitis, uncle has colitis with a chunk of his bowel removed). I now have a special IBD nurse and they’re fab. I was immediately put on steroids plus saloflak and was amazed that I was fairly quickly normal. I was lucky with side effects in that I didn’t put any weight on, the only noticeable thing was mental side effects, struggling to concentrate and feeling really low. Unfortunately as soon as those ran out I started to revert back again and within three months have had to have another course of steroids because it was so out of control again. This triggered the next level which for me has been azathioprine, the only side effect I’ve experienced so far is the azathioprine makes my iron drop quite several so have had to have an iron infusion and wow have I been tired. The disease already causes fatigue and with that on top it nigh on levelled me. Azathioprine hasn’t quite had the impact required and I had to have ANOTHER scope (I sodding hate them) which confirmed shock horror I still have UC!! So I’ve just last week had my second dose of infliximab which I’ll be on for a year at least as well as saloflak and azathioprine. So far so good, the iron has kicked in and apart from the odd day here and there I’m pretty much okay. I’m lucky with work that my boss is great about it and her boss has crohns so they all get that I have appointments etc to attend. I definitely have to agree that stress is a big factor for me but I think I’m extremely sensitive to it, what other people cope with fine my body just goes on high alert and once that high alert is on even becoming not stressed doesn’t help. I’m not sure a new job would help because I think with most jobs my level of threshold is so low that it would happen again. It really worries me just how quickly the disease seems to be deteriorating and I just hope that it levels out now. Our really busy season starts again in September and lasts til Christmas and I’m worried that I’ll just not cope at all. I think a big thing for me to learn and coach myself into is that as soon as I know I’m not okay, I get on to the nurses and tell them because I can’t go back to January again so I have no choice but to do things differently.Posted 2 years ago
Thank you all for your replies, I really find it hard to believe that this can get me down so much, I guess it’s mostly the fact that there is no straightforward answers and it’s just going to have to be a case of working out how my body has to manage it, there is so much information to take on board. I could be far worse off at this point and I’m grateful for that at least. That said, micro sleeping on the pan at one (and three and five) in the morning is pretty trying! 😀
Currently I’m taking Mezaclan twice a day but it’s having little effect, to the point now where I’m starting to be reluctant to eat. I know that’s not good or practical and I can’t imagine my wife would allow it anyway!
One thing I have found amusing is realising the number of people that love to use the phrase ‘my life is so full of sh*t!’ ……. and me thinking ‘you don’t know the half of it!!’
Thanks again, this place is pretty awesome when it matters!Posted 2 years ago
Certain foods may have an effect on you too.
I have Chrons (pretty mild) and when it does flare up I switch to a low residue diet and avoid foods that are hard to digest.
I’m on azathioprine at the mo plus just finishing a course of budenofalk (steroid). Steriods don’t seem to affect me too much.
I feel low sometimes but that could also have a lot to do with other events in my life.
But I don’t ever really feel down about it. There are treatments out there so you’re on the road to managing your condition. Worse thing is ignoring it.Posted 2 years ago
Just as a side note check out IBD Runners and Riders on Facebook – very supportive group.
Golfchick – I seem to recall previous posts that suggest you may be same sort of area as myself, Wyre Forest etc. You’re not with Dudley NHS are you – I’ve been referred to the IBD team there for over ten years now and if that’s the case you’ll be in good hands I hope, always been great with me.Posted 2 years ago
I can empathise completely with you Moe. There doesn’t seem to be any straight forward ‘do this do that’ methods and it is now a case of listening to your body and modifying what you’ve always thought is the case. I still cycle 100 miles a week on average even when at my most exhausted/ill and people therefore assume I’m just fine but it costs me everything at those times to continue on that way. I got some grief over the winter for the amount of turbo time but it became the fact that it was the only safe way to carry on, I could literally jump off and run to the loo. At times I was pretty much crying whilst cycling on it, sheer idiocy means I carried on. Micro sleepin gon the loo I’m totally with you, Jan time I was up around 4 times a night easily, I had to lie on my back and lie as still as humanly possible because as soon as I would move I was off again, Our bathroom is very narrow and means when sitting on the loo I can lean forwards and my head rests on the wall and I can shut my eyes but not quite snooze because it’s so uncomfortable. I was having to sleep in full pjs and a jumper poised to grab because of how chilly it is in the middle of the night. Mood killer or what!
I’ll check out the IBD runners and riders group on FB, I tried an IBD support one but so many people were USA based that it just annoyed me.
You’re right on the area stuc but because I actually live in Kidderminster I fall under Worcestershire so get to go to Worcester and fall under their team. They’re pretty fab to be fair!Posted 2 years ago
My ulcerative colitis is now under control but the earliest flares were the scariest.
Incidentally, I was diagnosed shortly after guiding a northern forum member on an East Dartmoor ride while they were holidaying in the area. I was suffering terrible joint pain, abdominal discomfort and bloating, and overwhelming fatigue. I can’t remember the guy’s name (rode a Turner) but he must have wondered what the hell I thought I was playing at offering to guide, but barely able to turn a pedal! Sorry dude 🙁
The initial flares coincided with me giving up smoking, which the consultant said was very common. I was prescribed three grams (three grams!!) of mesalazine daily which seemed like a huge amount of drug, especially as the consultant didnt have much faith in it’s effectiveness or much knowledge of how it worked, so I politely declined.
I gave up alcohol and caffeine, and ate only fresh, unprocessed fish, fruit, vegetables, seeds and pulses (except broccoli, wheat and sweetcorn as even a small nibble would put me on the loo for a week) and I refrained from ever overeating.
All of the uncomfortable symptoms ceased unless I deviated from this diet, although I experienced profuse rectal bleeding every time I passed a stool over the next two or three years. Obviously very frightening, but further endoscopys and reassurance from my consultant helped. I needed iron supplements during this time to relieve anaemia.
Eight years on and I still maintain a similar diet. However, I am able to eat anything I like in moderation, I drink as much booze as I like and remain completely symptom free unless I eat nuts, red meat, over eat or drink coffee.
I’m not recommending this to anyone else however.
My sister also has UC and her triggers are completely different so it really is down to the individual. I also believe that beyond the severity of my early flares my case must be very mild.
Good luck. I hope you all get to grips with your symptoms.Posted 2 years ago
Good to hear Golfchick that Worcestershire also have a good IBD team.
For anyone new to this I’d highly recommend finding out if your local NHS has specialist IBD nurses. Hopefully they’re supportive and understanding of the issues – it can be very difficult to initially get on top of and also at times of flares.Posted 2 years ago
Well, a week and a bit into the steroids and improvements are noticeable, not least skin irritation clearing up completely!! Years I’ve been suffering that and the relief of not wanting to scratch till raw is hard to believe!
Going lactose free also seems to be helping, I was advised by GP to avoid while on the steroids as I’m also taking calcium.Posted 2 years ago
Diagnosed with UC 15 years ago.
Had a variety of drugs over the years – incl steroids when flaring
Now on a combination of Azathioprine and Allopurinol.
I temd to eat drink what I want. But I do have low level symptoms which is probably as a result of me not cutting back on trigger foods like alcohol, caffeine, sweets, etc.
Also told by consultant it was most likely due to me stopping smoking. Funny thing is I went in to have a grape removed and then suddenly had UC. Bizarre!
Thinking of trying CBD oils next.
Good luck OP. Feel free to DM me and I will be glad to share war stories if you want!Posted 2 years ago
Had it since 1976. was told in 1982 to have an ileostomy whilst i had a bad flareup. Never had the op and its been variable since , but nothing like the flare up in 1982. Steroids are awful things – risk of steroidal diabetes and other side effects. Make sure you have regular colonoscopies as risk of bowel cancer is quite high – had half bowel removed in 2016 due to this. Previous medication that worked a treat from 1982 till the op no longer works due to the op changing the way bowel works. I used to work for the civil service and got extra sick days built into my job description as uc is covered by dda. Hopefully you’ll find a drug that works for you.Posted 2 years ago
You lot are bloody heroes for dealing with all that!Posted 2 years ago
Interesting to know about extra sick days being built into job description. My symptoms and diagnosis are all on file with HR but they still cause me to trigger into the Bradford Factor that we have at the College. How on earth they expect me to sometimes not being off sick is utterly ridiculous, I was hoping once I’d had a formal diagnosis that certain days would be cleared from history as they’re beyond my control but seemingly not. It doesn’t cause me any grief but it is an issue when I know I need a day off and with Sept – Dec approaching knowing that I’ll struggle plays on my mind sometimes.
Great to hear OP is settling down a little, I found it a bit disheartening to know that steroids made such a difference and then when I stopped taking them it returned. Such relief from something that can’t be constantly taken. Lets hope they find a good treatment for you once the steroids have ended that can allow you some semblance of normalcy.Posted 2 years ago
I’m pretty lucky really I have morning and evening episodes but generally throughout the day I’m fine, can still do as I please but I daren’t take it for granted and that it might not change. I left the civil service shortly before I was diagnosed but I now work in the cycle trade so no regrets!Posted 2 years ago
and a sample size of one
worth investing?Posted 2 years ago
My wife suffers and has had 3 flare ups now. The last two were sorted by steroids but the last one left her with very sore knees for 3 months, is this UC or a reaction to coming off the steroids?
Has anybody actually tried cannabis oil as a cure or is it quack science, I have found anecdotal evidence and some actual medical research that suggested that cannaboids (or something very similar) are naturally occurring in our guts, so this might be why it helps with UC/Crohns, etc. I know of someone who has suffered greatly with Crohns but is now using the oil and leading an almost normal life.Posted 2 years ago
On a slightly different aspect of the condition …… what is the best air freshener? having only one loo in the house has it’s own challenges at the best of times and I am all too aware that my wife and other visitors have to put up with the unpredictability and also the ….. shall we say ‘fallout’!?Posted 2 years ago
I’ve just been diagnosed with IBS (after blood and faecal test came back clear) although fortunately it seems to be a case of flare ups rather than constant. I recently noticed research suggesting that strawberries could assist inflammatory bowel disease (although I’ve now idea of how valid this is); possibly worth noting though.Posted 2 years ago
what a week, no improvement and Wednesday it was as much as I could do to cycle the two and half miles to work! Called IBD nurse who advised going back up to 40mg on the steroids, Came home early, discovered I’d forgotten to take the tablets in the morning so took all 40mg, showered, felt cold, wrapped up. late evening and I’m sweating buckets! Went to bed, then woken by my wife at half midnight because I was under the duvet but unaware I was sweating buckets again and the bed was literally soaked! By morning though I felt much much better. Saw doctor, spoke to nurse who wanted me in for IV administration of steroids but managed to convince her that things were better so she relented. Still pretty severe discomfort in the early mornings but feeling much better now. Getting some awesome acne, just like being 16 again! ….. Though easier to resist the temptation to squeeze! 😨
Anyone else suffered night sweats?Posted 2 years ago
I suffered with hideous UC for a couple of years – nothing could control it; drugs, diet, smoking, not smoking – just a hideous cycle of shitting 20-30 times a day/night. Visiting insurers in London and having to use the tube was what stressed me the most – knowing there was no toilet for at least 10 minutes and I’d have to hunt one out off the station.
I knew where every public toilet, friendly shop and petrol station with a bathroom was in the Leeds, Sheffield and Manchester triangle as I could *need* the toilet at no notice at all.
Steroids made me blow up like a balloon and the mecaptapurine (?) and methotrexate made me feel shite. Tired all the time and could barely function some days.
Horrible horrible disease and I had no choice but to opt for an ileostomy which to be fair has been fine. Just a different way of going to the toilet.
looks like more surgery beckons though to get rid of the stump because that is still ulcerated but hey.
All I can say to the OP is you have my thoughts – I know what you’re going through. Drop me a note if you ever want to chat.Posted 2 years ago
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