Crohn's Disease
Discussion
Is there anyone on here with Crohns? I was diagnosed a while ago now (13 years i think) but apart from a year or so after being diagnosed haven't needed significant hospital treatment. However over the last 2 or 3 years things have worsened after the azathioprine stopped working. Since then I have tried all biological drugs available on the NHS and had courses of prednisolone now and again to calm things - they have been the only thing that consistently helps but i notice they do less and less and side effects are more obvious with each course.
So now is crunch time and since the stelara isn't working it leaves surgery as the only medical option. So i am trying to control by diet which is a struggle for me as food has always been a big part of my life. I have cut out proper meals... generally over the last 2 weeks I am living off actimel, complan, plain biscuits for some texture (hobnobs mostly) and an evening meal of soup or a half size dinner (usually reasonably healthy).
It hasn't so far had as much of an impact as i thought it would. I know that everyone's triggers etc are different, but I am always interested to read other people experiences - whether there may be better liquid diet alternatives to complan that is easily accessible, maybe liquid isnt the answer? My bowel definitely needs a rest!
Open to any suggestions as I am willing to give anything a try now.
So now is crunch time and since the stelara isn't working it leaves surgery as the only medical option. So i am trying to control by diet which is a struggle for me as food has always been a big part of my life. I have cut out proper meals... generally over the last 2 weeks I am living off actimel, complan, plain biscuits for some texture (hobnobs mostly) and an evening meal of soup or a half size dinner (usually reasonably healthy).
It hasn't so far had as much of an impact as i thought it would. I know that everyone's triggers etc are different, but I am always interested to read other people experiences - whether there may be better liquid diet alternatives to complan that is easily accessible, maybe liquid isnt the answer? My bowel definitely needs a rest!
Open to any suggestions as I am willing to give anything a try now.
I am sorry to hear of your plight.
I was diagnosed aged 4, and am now 47.
I was a fairly sickly child, and at one stage wasn't expected to last beyond 18. I was on a cocktail of tablets (including prednisolone), If it's any hope, my Crohn's did then quieten down significantly from late teens onwards. I still needed to go to the toilet a lot, and occasionally felt I could have shat through the eye of a needle, but I was able to eat and drink normally, and even managed to become a reasonably useful rower.
It's a weird disease as it seems to affect people very differently. I can only say hang in there, and best of luck.
I was diagnosed aged 4, and am now 47.
I was a fairly sickly child, and at one stage wasn't expected to last beyond 18. I was on a cocktail of tablets (including prednisolone), If it's any hope, my Crohn's did then quieten down significantly from late teens onwards. I still needed to go to the toilet a lot, and occasionally felt I could have shat through the eye of a needle, but I was able to eat and drink normally, and even managed to become a reasonably useful rower.
It's a weird disease as it seems to affect people very differently. I can only say hang in there, and best of luck.
I’m UC for 30yrs as opposed to full blown Crohn’s, massive sympathies OP. I’m currently on Azathioprine, it’s working and making my condition largely manageable, save the odd emergency.
My next-door neighbour (a super fit 35yo ex paratrooper) had Crohn’s come pretty much from nowhere over 6 months, he ended up needing life-saving surgery.
He had to have a large section of bowel removed and a stoma for 6-9 months but is now back to living an active life, completely symptom, and bag-free. They were basically able to reconnect everything after some time for it all settling down.
Your situation sounds pretty miserable, surgery could well help you too.
Are you a member of Crohn’s & Colitis UK? Great charity doing lots to improve people’s lives coping with it, and of course researching a cure. Thoroughly recommend joining.
https://www.crohnsandcolitis.org.uk/
They’ve also got some really great help resources to utilise if you want some free advice.
My next-door neighbour (a super fit 35yo ex paratrooper) had Crohn’s come pretty much from nowhere over 6 months, he ended up needing life-saving surgery.
He had to have a large section of bowel removed and a stoma for 6-9 months but is now back to living an active life, completely symptom, and bag-free. They were basically able to reconnect everything after some time for it all settling down.
Your situation sounds pretty miserable, surgery could well help you too.
Are you a member of Crohn’s & Colitis UK? Great charity doing lots to improve people’s lives coping with it, and of course researching a cure. Thoroughly recommend joining.
https://www.crohnsandcolitis.org.uk/
They’ve also got some really great help resources to utilise if you want some free advice.
Edited by PurpleTurtle on Friday 1st November 19:11
Thanks all for the replies. I'm certainly not in a terrible state, but if I can do anything to avoid surgery I'll do it. Not just because its surgery, but because it may just come back any way.
Drugs-wise (ignoring the bad phase of diagnosis 13 odd years ago) I spent a few years on asacol, then about 6 years on azathioprine and then mercaptopurine for a year or so both with very occasional steroids. Over the last 3 years it's been humira for 12 months, infliximab for 6 months, vedolizumab for a year and ustekinumab which I started in july and has had no effect so far. Also regular 8 week steroid use for 2 years on and off. I think that's everything.
I've never had a good diet. But always thought it's worth a bit of pain/bout of the s
ts...that is definitely no longer the case!
Drugs-wise (ignoring the bad phase of diagnosis 13 odd years ago) I spent a few years on asacol, then about 6 years on azathioprine and then mercaptopurine for a year or so both with very occasional steroids. Over the last 3 years it's been humira for 12 months, infliximab for 6 months, vedolizumab for a year and ustekinumab which I started in july and has had no effect so far. Also regular 8 week steroid use for 2 years on and off. I think that's everything.
I've never had a good diet. But always thought it's worth a bit of pain/bout of the s
ts...that is definitely no longer the case!Decent checklist! And to be fair, sounds like you have a pretty decent gastro from the set up you’ve been offered. I stopped at Vedo having done the rest of your list, my next option was Tofacitinib over Ustekinumab. However, this was at the point I was diagnosed with UC (again) over Crohns Colitis. (Crohns of the Colon only) and I don’t think Tofa is recognised for Crohns.
Last month I had an Ileostomy due to adenomas & dysplasia found in the Colon. Whilst I was prepared to suffer ongoing meds over an op on the basis one day a cure/remedy would be found, I wasn’t going to mess with the big C!
Having now involved myself with the Instagram Ileostomy community, there’s a lot of people out there with Ileostomies and Crohn’s. However as you’ll be aware, for Crohns you still have risk of disease elsewhere. It isn’t a complete solution.
There are a growing number of people turning to plant based lifestyles, with success. If I were still in one piece I’d give it a serious go. My biggest hurdle was a very restricted diet to be able to do so - I couldn’t eat green veg or most fruit, no beans/pulses etc so I’d have struggled. I’m still considering it, as the ileostomy means I may not have the same dietary restrictions now. Worth considering!
Last month I had an Ileostomy due to adenomas & dysplasia found in the Colon. Whilst I was prepared to suffer ongoing meds over an op on the basis one day a cure/remedy would be found, I wasn’t going to mess with the big C!
Having now involved myself with the Instagram Ileostomy community, there’s a lot of people out there with Ileostomies and Crohn’s. However as you’ll be aware, for Crohns you still have risk of disease elsewhere. It isn’t a complete solution.
There are a growing number of people turning to plant based lifestyles, with success. If I were still in one piece I’d give it a serious go. My biggest hurdle was a very restricted diet to be able to do so - I couldn’t eat green veg or most fruit, no beans/pulses etc so I’d have struggled. I’m still considering it, as the ileostomy means I may not have the same dietary restrictions now. Worth considering!
thanks. fruit has always been my only properly healthy eating (with only a little veg), but has always caused me issues which is frustrating. plant based might be my next trial but cutting out meat entirely will be really difficult and probably a true test of how much i want to avoid surgery.
Sounds like you are getting the correct treatment so far. In general terms you need to know if it is ongoing activity (inflammation) of the Crohn's or scarring from previous Crohn's activity that is responsible for your symptoms.
Drugs are good for the former, surgery for the latter. Surgery can be a good option but you are correct to explore all options. There are trials going on around the country of newer agents that you have not tried. Talk to your clinicians about this. Happy if you want to pm off line I work in this area.
Drugs are good for the former, surgery for the latter. Surgery can be a good option but you are correct to explore all options. There are trials going on around the country of newer agents that you have not tried. Talk to your clinicians about this. Happy if you want to pm off line I work in this area.
forgot to say i have been referred to Addenbrookes where i believe (having looked at what i can online) there are quite a few trials running. i am not expecting anything to come from that for the next couple of months based on what my gastro said though.
i am pretty confident it is current inflammation rather than scarring - never thought of it that way. previous colonoscopys have been reasonably clear of scarring but I've never been this bad so who knows. I've got an MRI on Friday which may show more, and a colonoscopy to be booked.
i am pretty confident it is current inflammation rather than scarring - never thought of it that way. previous colonoscopys have been reasonably clear of scarring but I've never been this bad so who knows. I've got an MRI on Friday which may show more, and a colonoscopy to be booked.
lawyered07 said:
forgot to say i have been referred to Addenbrookes where i believe (having looked at what i can online) there are quite a few trials running. i am not expecting anything to come from that for the next couple of months based on what my gastro said though.
i am pretty confident it is current inflammation rather than scarring - never thought of it that way. previous colonoscopys have been reasonably clear of scarring but I've never been this bad so who knows. I've got an MRI on Friday which may show more, and a colonoscopy to be booked.
Addenbrookes are excellent for inflammatory bowel disease. you will be in good hands. Good lucki am pretty confident it is current inflammation rather than scarring - never thought of it that way. previous colonoscopys have been reasonably clear of scarring but I've never been this bad so who knows. I've got an MRI on Friday which may show more, and a colonoscopy to be booked.
lawyered07 said:
forgot to say i have been referred to Addenbrookes where i believe (having looked at what i can online) there are quite a few trials running. i am not expecting anything to come from that for the next couple of months based on what my gastro said though.
i am pretty confident it is current inflammation rather than scarring - never thought of it that way. previous colonoscopys have been reasonably clear of scarring but I've never been this bad so who knows. I've got an MRI on Friday which may show more, and a colonoscopy to be booked.
Snap! I am under Addenbrookes as well.i am pretty confident it is current inflammation rather than scarring - never thought of it that way. previous colonoscopys have been reasonably clear of scarring but I've never been this bad so who knows. I've got an MRI on Friday which may show more, and a colonoscopy to be booked.
How do you find them? I do like my gastro and ibd nurses but I feel like I always know what they are going to say. And maybe now the normal regimented steps haven't worked they aren't sure where to go (maybe there just isn't anything). Just feels like there must be other less traditional methods but what do I know
I've had UC for the last 6 years.....to cut a long story short I got off all medications 3 years ago by adopting a diet of eating meat and water only. After my gut healed I now have the odd curry and weekend off but always go back to eating meat and drinking water during the week. I was pretty much a basket case i couldn't leave the house needing to go to the toilet 30+ times a day. Obviously this diet is restrictive but it worked 100% for me, I know it has worked with people with Chrons also.
I've been diagnosed with it since 2010/11 after an emergency resection following a rupture to my small bowel although I had some symptoms of IBS etc a few years before.
Largely been ok. Didn't have any drugs for a few years as I was on a trial and ended up on a placebo which was in hindsight pretty bad as if I had been treated straight after surgery the inflammation may have never come back.
but then inflammation got worse and got put on azathioprine. That started to not work so well so am on another trial with a periodic injection of Usteximab (cant spell) biologic. That's got rid of the inflammation but am left with a load of scar tissue and therefore a narrowing which needs operating on. Not too fussed as once that sections gone I should be ok.
It's frustrating that there's so many triggers and possible treatments with no clear answers for everyone.
Certainly worth being referred to a dietician and seeing what could be a trigger.
Largely been ok. Didn't have any drugs for a few years as I was on a trial and ended up on a placebo which was in hindsight pretty bad as if I had been treated straight after surgery the inflammation may have never come back.
but then inflammation got worse and got put on azathioprine. That started to not work so well so am on another trial with a periodic injection of Usteximab (cant spell) biologic. That's got rid of the inflammation but am left with a load of scar tissue and therefore a narrowing which needs operating on. Not too fussed as once that sections gone I should be ok.
It's frustrating that there's so many triggers and possible treatments with no clear answers for everyone.
Certainly worth being referred to a dietician and seeing what could be a trigger.
lawyered07 said:
How do you find them? I do like my gastro and ibd nurses but I feel like I always know what they are going to say. And maybe now the normal regimented steps haven't worked they aren't sure where to go (maybe there just isn't anything). Just feels like there must be other less traditional methods but what do I know
I'm inclined to agree, but I suspect you're right that there just isn't anything in a lot of cases - it's a weird disease.joema said:
Certainly worth being referred to a dietician and seeing what could be a trigger.
My experience with a dietician wasn't great, she had very little understanding of Crohn's or Colitis, I had to explain most of it to her in basic terms, she wasn't able to tell me anything you can't read online. Perhaps I just got a poor one. My gastro consultant is very much of the view that the inflammation is caused by non-dietary factors, but can be aggravated by it.
I don't need to see a dietician to tell me that alcohol and spicy food make a flare worse, that's all basic common sense.
I have an identical twin - same DNA, same lifestyle, almost identical diet. I have had colitis for 30 years, he has never had a day's grief.
PurpleTurtle said:
I don't need to see a dietician to tell me that alcohol and spicy food make a flare worse, that's all basic common sense.
Yet your common sense is thrown out if my window by spicy food being settling for me. I either have spicy food or chilli flakes most days and feel less settled when I don’t.
Indian Takeaway doesn’t particularly agree with me, but I believe that’s down to the ghee rather than the heat - if I make my own hot curry I’m absolutely fine. IBD is very very odd!
I’d also suffer much less from a pint of cider than I would a pint of orange juice, but lager goes straight through me.
(All pre surgery information!)
Op I wish you well in the battle against this brutally misunderstood illness.
Diagnosed with Crohn's in 94.. had 2 re-sections years ago.
Had another re-section yesterday and currently in critical care.
Routine operation turned into 4 hour battle according to surgeon. 4 loops of intestine had fused together, requiring separating before removing 12 inches of blocked small intestine. Started out as a fistula which had decided to escape from my stomach wall 3 months ago.
Don't know how others find this, but my biggest issue is persuading GP's etc something is badly wrong and not just sore guts.
Even fistula (pic below) wasn't enough to get things moving along. Or 3 hospital admissions in 3 months.. including 1 ambulance job.
Surgeon finally acknowledged extent of problem when I was cut open. In related news.....an epidural is highly recommended for pain management.
Diagnosed with Crohn's in 94.. had 2 re-sections years ago.
Had another re-section yesterday and currently in critical care.
Routine operation turned into 4 hour battle according to surgeon. 4 loops of intestine had fused together, requiring separating before removing 12 inches of blocked small intestine. Started out as a fistula which had decided to escape from my stomach wall 3 months ago.
Don't know how others find this, but my biggest issue is persuading GP's etc something is badly wrong and not just sore guts.
Even fistula (pic below) wasn't enough to get things moving along. Or 3 hospital admissions in 3 months.. including 1 ambulance job.
Surgeon finally acknowledged extent of problem when I was cut open. In related news.....an epidural is highly recommended for pain management.
I hope things improve for you OP, there is always right at the end of the tunnel....... though as mentioned above, it affects us all in different ways for sure. In two weeks time I'm celebrating 30 years since I was 7 stone 4. And at 6'4", that was never a pretty sight !
A lot of years of Aza resulted in coming off and swapping to other drugs, none of which worked and subsequently ended up in surgery 9 years ago, losing around 20 inches of the bad stuff. Back onto Aza again after that to settle it all down. Nowadays on Infliximab, just a shot in the leg every other week and thus far, everything seems settled.................. Though we always know a flare up could hit at any time !!!!!
A lot of years of Aza resulted in coming off and swapping to other drugs, none of which worked and subsequently ended up in surgery 9 years ago, losing around 20 inches of the bad stuff. Back onto Aza again after that to settle it all down. Nowadays on Infliximab, just a shot in the leg every other week and thus far, everything seems settled.................. Though we always know a flare up could hit at any time !!!!!
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