Says it all.....
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Dear lord help me....
- Thread starter Sophabulous
- Start date
Cat-a-Tonic
Super Moderator
Oh no! I haven't done that one myself, but I'm sure it's not pleasant. When do you have to start drinking it? I hope it's not too horrendous.
This tip might help - when doing prep a couple of years ago, I told myself that I was just doing a "cleanse" like a celebrity would do. So I sort of treated prep day as a spa day. I turned my bathroom into a spa as much as I could - I got scented candles, fancy bubble bath, and face mud masques. I had my ipod on a dock in the bathroom, playing a soothing and relaxing playlist. In between (or during) bathroom trips, I gave myself a pedicure and a facial and took a bath. It wasn't too bad. Prep day is never fun no matter what, but that made it more tolerable I think. So pamper yourself a bit, that might be a good distraction from how horrible the moviprep is. Good luck!
This tip might help - when doing prep a couple of years ago, I told myself that I was just doing a "cleanse" like a celebrity would do. So I sort of treated prep day as a spa day. I turned my bathroom into a spa as much as I could - I got scented candles, fancy bubble bath, and face mud masques. I had my ipod on a dock in the bathroom, playing a soothing and relaxing playlist. In between (or during) bathroom trips, I gave myself a pedicure and a facial and took a bath. It wasn't too bad. Prep day is never fun no matter what, but that made it more tolerable I think. So pamper yourself a bit, that might be a good distraction from how horrible the moviprep is. Good luck!
I've just about finished the first dose, so far not too bad! I was advised to add a bit of elderflower cordial which has taken the edge off the nasty taste. I really struggled to drink it last year!
Not too bad this time as I hadn't eaten for 8 hours before starting it. Last time I had a PM appointment so I could eat until about 6pm the night before I think, do 1 dose after that and another dose at 6am on the day of the appointment. At least I don't have to get up early this way around lol!
Not too bad this time as I hadn't eaten for 8 hours before starting it. Last time I had a PM appointment so I could eat until about 6pm the night before I think, do 1 dose after that and another dose at 6am on the day of the appointment. At least I don't have to get up early this way around lol!
I've just realised my arm looks so odd in that picture?! Like a scrawny zombie limb or something? It's not actually like that, must be the angle I was holding the box at [emoji23]
Dreaded prep day.....I have this on Sunday.....again. So not looking forward to it!
- Location
- Southern British Columbia
Soph,
I'm sorry to hear that you are having such a bad day. I hope things get better. I never liked doing prep very much either.
I'm sorry to hear that you are having such a bad day. I hope things get better. I never liked doing prep very much either.
- Location
- Southern British Columbia
Candace,
I wish you the best with your prep day as well. I remember those days. Yuck!
I wish you the best with your prep day as well. I remember those days. Yuck!
Me too
- Location
- Southern British Columbia
Group hug. :ghug:
Defo a group hug moment! I *think* Moviprep has done its worst. Not risking sleep just yet though lol.
Good luck to you on Sunday dejavucandace!!
Good luck to you on Sunday dejavucandace!!
Oh no! I got sent Moviprep in January and immediately balked at the massive volume and asked for Picolax instead. Have you finished it or do you have another dose to go? Congratulations either way!! The hard part's nearly done 
Oh no! I got sent Moviprep in January and immediately balked at the massive volume and asked for Picolax instead. Have you finished it or do you have another dose to go? Congratulations either way!! The hard part's nearly done
I've finished drinking it now, just waiting for the last of the *ahem*...effects to wear off!
I had picolax when I had a small bowel MRI last year and I had to call the hospital the next morning in a panic as it didn't do anything! I only had one sachet though, I'm sure if they'd prescribed 2 it would have had some effect.
Moviprep is very unpleasant but it does do the trick to be fair. Although the taste is absolutely foul, at least I don't have any nausea today. It really tested my vomit control last time [emoji23]
- Location
- Southern British Columbia
I wish you the best. I know how gross prep is. You are a trooper compared to me.
Wow, congratulations again on finishing! I know I'd never be able to. Yeah, with Picolax it only ever seems to take effect after the second sachet - always a bit concerning if you have an afternoon appointment and have to have a morning dose! Last time I was worried that I wouldn't be able to stop by the time I had to leave for the hospital!
Good luck with the scope, too! Hope all goes well
Good luck with the scope, too! Hope all goes well
That dreaded day. Sending you strength!
Also I'm so in love with Cat's suggestion and am definitely doing that next time.
Also I'm so in love with Cat's suggestion and am definitely doing that next time.
Thank you all, I'm quietly confident things are much better than last time (about time too!)
Just hoping that tomorrow doesn't throw up any nasty surprises. I'm not sure I'm being told the result tomorrow or if it will be at my next appointment actually?
I decided to go full masochist and book myself in for another rather unpleasant procedure on Monday too, just to totally spoil the whole week lol!
Just hoping that tomorrow doesn't throw up any nasty surprises. I'm not sure I'm being told the result tomorrow or if it will be at my next appointment actually?
I decided to go full masochist and book myself in for another rather unpleasant procedure on Monday too, just to totally spoil the whole week lol!
Yep, that sounds pretty darn relaxing! This time next year I shouldn't be sharing a bathroom with 2 others so it's definitely something I'm going for....no boys allowed lol!
- Location
- New York, USA
I had my annual scope last week, remicade this coming Monday and an upper scope Thursday after that..... Guess we are suckers for punishment!
- Location
- Southern British Columbia
God speed Ron!
I'm all done. My Crohn's is now moderately active rather than severe so we're going the right way. That's taken 2 pred tapers from 40mg, 12 weeks liquid diet and 100mg azathioprine daily in 12 months. I was hoping I would only have mild inflammation now as all that treatment in 12 months seems like a lot! I guess it just takes a long time to settle down when it's gone unchecked for so long :-/
Damn though it was painful this time. Glad it's over and I hope I won't need another for some time now!
Damn though it was painful this time. Glad it's over and I hope I won't need another for some time now!
And they are still leaving you on Aza ?
Even though it's still not under control ???
Can't they bump you to a biologic so more damage isn't done ?
Aza reaches its peak after 3-5 months
So what you see is basically as good as it gets after 12 months .
Even though it's still not under control ???
Can't they bump you to a biologic so more damage isn't done ?
Aza reaches its peak after 3-5 months
So what you see is basically as good as it gets after 12 months .
I've actually only been on the aza for 6 months, sorry that wasn't clear. It took forever for the TPMT test to come back for it so in the meantime they tried me on Pentasa but that had terrible side effects for me so I stopped taking it.
Between April & September last year I wasn't taking any maintenance meds as a result, and we were waiting for TPMT bloods to come back so they could give the go ahead for Aza!
I do feel much better than I did, but I know I could still get better than I am. I've spoken to a nurse/HCA when I was discharged today, I'll get an appointment through for an appointment with the IBD nurse or consultant in the next few weeks so we'll discuss options then.
I'll be sure to come back and let you know what the outcome is!
Well I say no maintenance drugs, I did one pred taper as soon as I was diagnosed which finished in June 2016. Then I flared so did the liquid diet for a few weeks instead. I was actually still doing the liquid diet when I started the aza but from what I've been told that reduces inflammation anyway by resting the bowel so hopefully it was some help before the aza started kicking in.
I've then done another pred taper in December and all through January and early Feb as I flared again in December after 3 months on aza, so that wasn't all that long ago.
It will be interesting to hear what they say. Would they still prescribe a biologic even though it has improved from what it was like to begin with?
I've then done another pred taper in December and all through January and early Feb as I flared again in December after 3 months on aza, so that wasn't all that long ago.
It will be interesting to hear what they say. Would they still prescribe a biologic even though it has improved from what it was like to begin with?
They aren't looking for improvements
You should have complete mucosal healing
No signs of inflammation
Especially being on steriods twice
And een once (equivalent to steriods )
Leaving inflammation leads to scar tissue , strictures, fistulas and obstruction
Think of a cut on your arm
The body inflames and then form as hard "scab"
Your intestines are soft and flexible like a garden hose
But the body thinks they are "sick"
And causes inflammation trying to "fix it"
The repeated inflammation causes scaring which is
Hard like pvc pipe and it thickens so a hard time to move stool through
This builds up pressure
So sometimes the body creates thin "new tunnel intestines " fistulas to by pass the thick hard areas
Other times it lets it get more narrow
Which leads to obstruction or rupture
Which is why GI try to eliminate all inflammation and get mucosal healing
Since you have been on Aza for 6 months and pred
I would try to see if they will let you try other options to let your gut heal
75% of Crohns patients otherwise end up with surgery within 5 years
And after the first surgery the odds go up
You should have complete mucosal healing
No signs of inflammation
Especially being on steriods twice
And een once (equivalent to steriods )
Leaving inflammation leads to scar tissue , strictures, fistulas and obstruction
Think of a cut on your arm
The body inflames and then form as hard "scab"
Your intestines are soft and flexible like a garden hose
But the body thinks they are "sick"
And causes inflammation trying to "fix it"
The repeated inflammation causes scaring which is
Hard like pvc pipe and it thickens so a hard time to move stool through
This builds up pressure
So sometimes the body creates thin "new tunnel intestines " fistulas to by pass the thick hard areas
Other times it lets it get more narrow
Which leads to obstruction or rupture
Which is why GI try to eliminate all inflammation and get mucosal healing
Since you have been on Aza for 6 months and pred
I would try to see if they will let you try other options to let your gut heal
75% of Crohns patients otherwise end up with surgery within 5 years
And after the first surgery the odds go up
Ok, that's not at all scary [emoji22]
I'm still quite new to it all really but I'm glad to hear that my gut instinct was right about the inflammation not reducing enough given the treatments I've had.
If they do go down the route of a biologic can I continue with the azathioprine as well? It's just it does help with my skin flare ups. What if they want me to carry on with aza alone? I don't deal very well with conflict and tend to be a doormat, particularly with doctors! I would feel like I was questioning their knowledge & experience [emoji51]
I'm still quite new to it all really but I'm glad to hear that my gut instinct was right about the inflammation not reducing enough given the treatments I've had.
If they do go down the route of a biologic can I continue with the azathioprine as well? It's just it does help with my skin flare ups. What if they want me to carry on with aza alone? I don't deal very well with conflict and tend to be a doormat, particularly with doctors! I would feel like I was questioning their knowledge & experience [emoji51]
Some continue Aza at a lower dose with biologics
But most GI in the US add mtx low dose with biologic
Since Aza has a high risk of lymphoma to begin with (biologics don't )
And T cell lymphoma is a higher risk when Aza plus biologics are combined
T cell lymphoma is fatal
Mtx plus biologics does not have that risk
Some skin issues oddly enough are related to Crohns
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Tend to get better when the intestine get better if that makes sense
Less inflammatory cells floating in the blood
Getting biologics in the U.K.
Is very hard from what I understand
Since it all about funding in your "district "
And not about what best for the patient
In the US it depends on your insurance- some are easier to approve it then others
It is hard to stand up to docs for yourself
I am mom so much easier to push for what's right for my kiddo
But ask the hard questions
If the drugs currently did not stop the inflammation
How does the doc plan to stop the cycle ?
What would be different
Repeated steriods does not stop the cycle
Why are they willing to wait until xyz happens
(Damage that requires surgery or ...
Before switching. Etc.,,
Lots of questions
But most GI in the US add mtx low dose with biologic
Since Aza has a high risk of lymphoma to begin with (biologics don't )
And T cell lymphoma is a higher risk when Aza plus biologics are combined
T cell lymphoma is fatal
Mtx plus biologics does not have that risk
Some skin issues oddly enough are related to Crohns
-
Tend to get better when the intestine get better if that makes sense
Less inflammatory cells floating in the blood
Getting biologics in the U.K.
Is very hard from what I understand
Since it all about funding in your "district "
And not about what best for the patient
In the US it depends on your insurance- some are easier to approve it then others
It is hard to stand up to docs for yourself
I am mom so much easier to push for what's right for my kiddo
But ask the hard questions
If the drugs currently did not stop the inflammation
How does the doc plan to stop the cycle ?
What would be different
Repeated steriods does not stop the cycle
Why are they willing to wait until xyz happens
(Damage that requires surgery or ...
Before switching. Etc.,,
Lots of questions
Yes, you can continue with aza with a biologic. I am currently on Humira and azathioprine.
In the back of my mind when I read your comment I was thinking about how difficult it would be to get on a biologic here. I think if the inflammation was still severe then there would be no choice, but as that's not the case I don't think they will offer.
No pressure then, I will certainly be asking about worst case scenarios. To be honest I'm sick of this now, I don't even have the worst symptoms in the world but it's just so draining. It's never not on your mind is it? [emoji53]
No pressure then, I will certainly be asking about worst case scenarios. To be honest I'm sick of this now, I don't even have the worst symptoms in the world but it's just so draining. It's never not on your mind is it? [emoji53]
Once you get a pretty scope and have a good maintenance med
Then yes you move on with life
Crohns wise Ds is there
It's all the extras from Crohns that we are dealing with now (arthritis and Sweets Syndrome)
Then yes you move on with life
Crohns wise Ds is there
It's all the extras from Crohns that we are dealing with now (arthritis and Sweets Syndrome)
I'm having an MRI next week as I'm convinced I've got sacroiliitis. I've had issues with my lower back for years before they found out about the Crohn's. It's taken an age for them to actually investigate it. It's just no fun is it. Do you have Crohn's too My Little Penguin or are you a parent of a poorly little one?
Parent
Ds was dx at age 7
He is now 13
If you have SpA or AS
It would be much easier to get biologics
Mtx is the first tier for peripheral joints
But spine is biolgics
Are you seeing a rheumo
If not request one asap
Tagging Maya142
Ds was dx at age 7
He is now 13
If you have SpA or AS
It would be much easier to get biologics
Mtx is the first tier for peripheral joints
But spine is biolgics
Are you seeing a rheumo
If not request one asap
Tagging Maya142
Aw that must be very hard. I'm going to be a little softer on my mum when she tries to interfere now. I get frustrated because I'm in my mid twenties and deal with everything myself, but i guess you never stop being someone's child no matter how old you are. I've had the letter for the MRI this afternoon, it's on the 20th so not long now. Do you think if that shows something up they will refer me to a rheumatologist?
A friend of mine was referred to one and ended up being diagnosed with lupus. Problem being the waiting list is 18 months! Thankfully her husband had private health insurance but that only covered her up to £1000 on an outpatient basis. That was 2 consultants visits and one full blood workup and it was all gone.
I have no insurance and nothing like that kind of money to spend on my health, so I guess I'll just have to wait! If it means I'm bumped into a biologic in the meantime then maybe it will be ok.
They absolutely should refer you to a rheumatologist. Axial SpA tends to flare independently of IBD, so treating the IBD won't necessarily make it better. So a rheumatologist really has to treat you.
There are only two treatments for axial SpA - NSAIDs (which are out for most people with IBD) and biologics. Methotrexate and Sulfasalazine work well for peripheral joints (joints other than the spine - hands, knees, ankles etc.) but NOT for your spine.
If you are put on a biologic for your IBD, that should help your SpA. Or vice-versa.
CCFA has a good explanation for the various types of arthritis associated with IBD: http://www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf
My younger daughter has both IBD and AS, while my older one and husband just have AS.
If you do have SpA, inflammation will show up on the MRI.
Anyway, good luck and push to see a rheumatologist if the MRI shows something!
There are only two treatments for axial SpA - NSAIDs (which are out for most people with IBD) and biologics. Methotrexate and Sulfasalazine work well for peripheral joints (joints other than the spine - hands, knees, ankles etc.) but NOT for your spine.
If you are put on a biologic for your IBD, that should help your SpA. Or vice-versa.
CCFA has a good explanation for the various types of arthritis associated with IBD: http://www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf
My younger daughter has both IBD and AS, while my older one and husband just have AS.
If you do have SpA, inflammation will show up on the MRI.
Anyway, good luck and push to see a rheumatologist if the MRI shows something!
Thank you, I already had an X-ray which showed nothing but apparently that's not unusual if the condition isn't advanced?
Something needs to give, I haven't been in control of my own body and life for too long now. I'm glad there's improvement on my scope and I do feel better than I did but if aza should have done a better job by now then I'm stuck if they won't give me a biologic going forward. My mum has wanted me to transfer hospital for a while but it's still a postcode lottery when it comes to funding.
The hospital that has been recommended to me is near greater Manchester and its a university hospital so maybe they get more funding based on population and the fact they are training future doctors?
I really don't know how it works but knowing our government it won't be logical!
Yes, all that means is that you don't have AS. With AS you need radiographic sacroiliitis (enough damage so it shows up on x-ray).
The issue is that it can take 8-10 years for that damage to show up. Inflammation does not show on x-rays. So that's why an MRI is needed.
If you did have inflammation in your SI joints, based on the MRI, then you'd be diagnosed with axial SpA.
I'm afraid that I don't know much about the UK system so I really can't help you with that. But I hope they will refer you to a rheumatologist if they see inflammation on your MRI.
The issue is that it can take 8-10 years for that damage to show up. Inflammation does not show on x-rays. So that's why an MRI is needed.
If you did have inflammation in your SI joints, based on the MRI, then you'd be diagnosed with axial SpA.
I'm afraid that I don't know much about the UK system so I really can't help you with that. But I hope they will refer you to a rheumatologist if they see inflammation on your MRI.
Hopefully! There's no other explanation for the flare ups of pain such as an old injury. From what I've read what I experience fits the profile perfectly. I hope I don't have it but at the same time if they tell me I don't then I'm back to square one.
I've been to a chiropractor for help several times for hip pain who can tell my lower back is inflamed and hot even though it might not be painful on the days I've seen her. She thinks the hip pain is related to the back pain as again there's no injury that could explain that either.
Once I know I have an appointment at the hospital to discuss results of both the scope and the MRI I will probably post again for advice!
I saw her before I even knew I had Crohn's never mind anything else, but I'll bear it in mind going forward.
Thank you
I would take 4 packets of pico salax before I would take those jugs of poison again. Its heaven once having found this product. Just drink 2 gallons of clear fluids first and then again after. Then the worst is to come instead of the other way around. lol
Sunday is my prep day too :/
What MRI scan is needed to tell if you have SpA? I've had a small bowel MRI scan and a CT scan and no one said anything about my joints? Would either of these tests pick up SpA or would I need a different type of MRI? (Sorry to thread hijack)!!
I'm assuming it's a different scan entirely, but not 100% certain myself! Maybe because you drink the contrast with a small bowel MRI that changes the focus?
The MRI for SpA is not the same as an MRE of the abdomen
Soph, I'm pleased to hear you are feeling better but sorry that your scope still shows inflammation. I'm in the same situation. Been on azathioprine for a year, still have symptoms and have a colonoscopy in a month. I am confident my GI will be reluctant to change my meds no matter what the colonoscopy shows. I just don't understand why it is so hard to get biologics here. Remicade has been approved since 1998! How is it still an issue to get it given all the research? I have also complained of my joint pain several times to my GI but again she won't refer to a rheumatologist and instead chooses to take a "wait and see approach" thinking it will stop when my crohns is better. Well it didn't stop after all the Crohn's was cut out after my resection!!
Sorry to hear you're in the same boat! I'm glad there's improvement but I'm thinking that it's more from the recent re-run of steroids than the azathioprine. I'm just panicking now, I don't know when I'm going in for a follow up to discuss and as was posted above I'm a bit concerned about the lasting effects of all this inflammation going unchecked. They also took 30 biopsies which struck me as an awful lot?!
I think with biologics here it all comes down to cost unfortunately! I have no idea how much the drug is but I'm guessing all the extra overheads of going to hospital for infusions, being monitored etc just puts so much extra pressure of struggling trusts! :-(
Hi all! After weeks of chasing I've finally been slotted in for an appointment on Thursday which was a cancellation. Obviously I'll be bringing up the issue of the azathioprine not working and the results of my MRI. Are there any questions you guys would be asking in my situation? I've kind of made my mind up that if they suggest I stay on the azathioprine and see what happens then I'll ask my GP to refer me somewhere for a second opinion.
Thanks in advance!
Thanks in advance!
Hi Soph,
Really pleased you got an appointment at last!
I would focus on this:
- Even if the MRI is normal, the colonoscopy showed your bowel has not healed and that is the most important point.
- The goal of treating Crohn's disease is full mucosal healing. That has to be your GIs priority. A little bit better is not to be settled for when there are so many other treatments available you haven't tried.
- Yes azathioprine takes a while to work, but if you have not had much improvement in 12 months then that's as long as you need to wait. This is probably as good as it's going to get with that drug right now. There is absolutely no reason for you to keep taking it in blind hope it might suddenly working after 12 months!! It usually should start working after 3 months. By 6-9 months it definitely should be doing it's job.
- Ask whether you qualify for biologics. If not why not.
Really pleased you got an appointment at last!
I would focus on this:
- Even if the MRI is normal, the colonoscopy showed your bowel has not healed and that is the most important point.
- The goal of treating Crohn's disease is full mucosal healing. That has to be your GIs priority. A little bit better is not to be settled for when there are so many other treatments available you haven't tried.
- Yes azathioprine takes a while to work, but if you have not had much improvement in 12 months then that's as long as you need to wait. This is probably as good as it's going to get with that drug right now. There is absolutely no reason for you to keep taking it in blind hope it might suddenly working after 12 months!! It usually should start working after 3 months. By 6-9 months it definitely should be doing it's job.
- Ask whether you qualify for biologics. If not why not.
Cool! Thank you
Let us know how it went
Hey!
I'm actually really pleased with how today went. I dragged myself there expecting disappointment but completely the opposite for a change! [emoji28]
I actually saw my consultant for the first time who is also a young woman and she was absolutely lovely so that always helps!
Good news is the MRI was normal and the back/hip pain is most likely muscular. I have actually been for a couple of massages which does seem to have helped anyway.
Biologics are most certainly on the table. She did have some concerns about it though. She described my activity as 'constantly grumbling' but never really badly flaring or settling down either. I think that's probably spot on.
Her reasoning was if I go on a biologic and things get worse down the line we've backed ourselves into a corner as I'm still quite young and obviously will be living with this forever. Very valid concern and one I will be thinking over very carefully myself.
She thinks it's possible I may not be metabolising the aza properly, so apparently one of the nurses will be in touch with me over the next few days to arrange some special blood tests that can check this? I did mention that I find it odd I don't have any side effects whatsoever at which point she started knocking very quickly on the wooden desk [emoji23][emoji85]
I've got to do another calprotectin (deep joy), and we will see how the land lies then and I'll go back in 2 months time to assess again. My only worry is that EVERY damn time my bloods and calprotectin results are only just outside normal parameters, yet when you look at the scopes it tells a completely different story. I think this might be a stumbling block down the line so I'll have to wait and see what happens I suppose.
I asked someone I know the other day who's on them and at the same hospital as me. She was put on one to reverse a fistula instead of surgery, and the funding has to be approved annually with evidence that inflammatory markers etc are high and so treatment is justified to continue. That makes me a little nervous as I would imagine I will just get sorted out and they won't approve the funding once I'm 'better.' I suppose if it can get me into remission then maybe just carrying on with Aza will be enough to keep it in check? Who knows when it comes to Crohn's!
The main thing was she had obviously carefully read my notes and knew about the duodenal activity too. That never happens! If I happen to bring it up during an appointment I'm usually just met with a blank look haha! We had a little chat about it being unusual in that site, and how I came to be diagnosed when my symptoms really do not point to Crohn's at all. Overall I'm feeling much happier and very glad that I managed to get that cancellation. It has put my mind at rest to know I'm not just going unmonitored for the time being when things aren't where they should be
I'm actually really pleased with how today went. I dragged myself there expecting disappointment but completely the opposite for a change! [emoji28]
I actually saw my consultant for the first time who is also a young woman and she was absolutely lovely so that always helps!
Good news is the MRI was normal and the back/hip pain is most likely muscular. I have actually been for a couple of massages which does seem to have helped anyway.
Biologics are most certainly on the table. She did have some concerns about it though. She described my activity as 'constantly grumbling' but never really badly flaring or settling down either. I think that's probably spot on.
Her reasoning was if I go on a biologic and things get worse down the line we've backed ourselves into a corner as I'm still quite young and obviously will be living with this forever. Very valid concern and one I will be thinking over very carefully myself.
She thinks it's possible I may not be metabolising the aza properly, so apparently one of the nurses will be in touch with me over the next few days to arrange some special blood tests that can check this? I did mention that I find it odd I don't have any side effects whatsoever at which point she started knocking very quickly on the wooden desk [emoji23][emoji85]
I've got to do another calprotectin (deep joy), and we will see how the land lies then and I'll go back in 2 months time to assess again. My only worry is that EVERY damn time my bloods and calprotectin results are only just outside normal parameters, yet when you look at the scopes it tells a completely different story. I think this might be a stumbling block down the line so I'll have to wait and see what happens I suppose.
I asked someone I know the other day who's on them and at the same hospital as me. She was put on one to reverse a fistula instead of surgery, and the funding has to be approved annually with evidence that inflammatory markers etc are high and so treatment is justified to continue. That makes me a little nervous as I would imagine I will just get sorted out and they won't approve the funding once I'm 'better.' I suppose if it can get me into remission then maybe just carrying on with Aza will be enough to keep it in check? Who knows when it comes to Crohn's!
The main thing was she had obviously carefully read my notes and knew about the duodenal activity too. That never happens! If I happen to bring it up during an appointment I'm usually just met with a blank look haha! We had a little chat about it being unusual in that site, and how I came to be diagnosed when my symptoms really do not point to Crohn's at all. Overall I'm feeling much happier and very glad that I managed to get that cancellation. It has put my mind at rest to know I'm not just going unmonitored for the time being when things aren't where they should be
Glad you had a good visit
They don't "hold out biologics " any more and let inflammation simmer
This allows damage to get worse
They use them even in very young child to wipe out the inflammation and allow the gut to stay as healthy as possible for as long as possible
There are plenty of biologics and new ones on the radar every few months
Currently there is
Remicade
Humira
Simponi
Cimizia
Stelera
Entivyio
Some stay on remicade for decades
Hope the blood tests go well
They don't "hold out biologics " any more and let inflammation simmer
This allows damage to get worse
They use them even in very young child to wipe out the inflammation and allow the gut to stay as healthy as possible for as long as possible
There are plenty of biologics and new ones on the radar every few months
Currently there is
Remicade
Humira
Simponi
Cimizia
Stelera
Entivyio
Some stay on remicade for decades
Hope the blood tests go well
I think the issue is here in the UK what I think happens is you are put on a biologic and if you then go into remission after a year the biologic is pulled. I think it is dangerous to burn through biologics like this and have that inflammation cycle so up and down.
I don't know what the answer/solution is as really if the issue isn't metabolism then after your scopes you really do need to step up the treatment plan :-( you don't want to be backed into a corner where you are letting inflammation simmer to the point of no return, where you end up with extremely difficult to treat fistulas or surgery. You want to stop Crohn's getting to that (often inevitable) point.
This is true! I was wondering about that, does all Crohn's activity lead to fistulas eventually? The Crohn's & Colitis UK website said something about biologics treating 'fistulising disease' as if this was a separate entity from the actual Crohn's itself?! Probably just me being daft but I didn't think it was all that clear.
That makes sense then
In the US you don't stop them if your in remission which is why you can basically only need one biologic and not have the inflammation cycling back and forth
That's horrible that they stop them only to let the inflammation come back and lose a perfectly good drug
Ds has been on humira for over 5 years now and has had clean scopes for years
But requires biologics for his arthritis as well
Good luck
In the US you don't stop them if your in remission which is why you can basically only need one biologic and not have the inflammation cycling back and forth
That's horrible that they stop them only to let the inflammation come back and lose a perfectly good drug
Ds has been on humira for over 5 years now and has had clean scopes for years
But requires biologics for his arthritis as well
Good luck
- Location
- New York, USA
Not all disease activity leads to fistulas, but I believe the longer you have untreated/active (or even 'grumbling') disease the more likely you are to develop other issues. I myself had fairly moderate disease since I was 7, through my early 20's it was not under control very well and when I was in my late 20's/early 30's developed fistulas.
Thankfully for me, I was able to go on Remicade and have been on it for almost 12 years now with continued success.
I was just telling my mum what happened today and she said the same! It does seem counterintuitive to stop something that's working well only for it to be required again in future after a relapse and more £££ in re-testing everything!
Hey ho, I guess it's the price to pay for not putting our hands in our pockets ourselves for our treatment. If the NHS does end up privatised I'll be in a very similar situation to so many of you guys with the ACA's future teetering in the balance :-(
No, not all Crohn's becomes fistulizing. Some people have strictures, some people have fistulas, others have both. Some just have inflammatory disease. This can change over time - for example, at year 1, most people would have inflammatory disease but about 5 years into the disease, the percentage who have strictures (scar tissue) goes up and the percentage who have just inflammation, with no other complications, goes down.
That is why it is really important to treat Crohn's early and aggressively to prevent complications.
I realize the situation with funding is different in the UK, but these drugs are not meant to be started and stopped. When they work, you are supposed to stay on them as long as they work!
So I can understand your hesitation, but on the other hand, you want to prevent long-term complications like strictures and the likelihood of surgery.
That is why it is really important to treat Crohn's early and aggressively to prevent complications.
I realize the situation with funding is different in the UK, but these drugs are not meant to be started and stopped. When they work, you are supposed to stay on them as long as they work!
So I can understand your hesitation, but on the other hand, you want to prevent long-term complications like strictures and the likelihood of surgery.
Thank you, that's cleared it up then. My problem is I've gone from severe to moderate but we don't know how many years there was active inflammation that we didn't know about. I think it was at least 6 years going by when my problems actually started, but they only got much worse than usual in 2014 so hopefully nothing before that will contribute to any lasting damage. Probably wishful thinking though ha ha!
Remicade & Humira were the two mentioned today for me to try, although they have much longer and unpronounceable names here! I'm glad to hear Remicade has done such a brilliant job for you. I think that would be the one I'm leaning towards after reading about them both, as although I'd be fine injecting myself at first, I read the site can be quite sore afterwards and over time I would probably start wussing out knowing it was going to hurt! Like the B12 injections... *shudders*
The conversation today was very frank actually. Basically if they leave me as I am I will undoubtedly develop complications down the line probably requiring surgery. If they put me on a biologic and things still don't improve or I keep relapsing we've exhausted all the options so it's probably back to surgery again. I think I will take my chances on a biologic doing it's job and hope for the best if they agree it's the best course of action!
This is no fun is it :-(
I've just replied to Lisa & My Little Penguin with the same sentiment! I don't think that I've been treated early and aggressively at all to be honest. A lot of that is my fault as I accepted what I was told even though I knew something wasn't right. It's just really difficult when you know *something* is wrong but not the foggiest what. I don't have diarrhoea, constipation or stomach pains so it's a miracle I was even picked up on as early as I was really! Even then I knew relatively little about treatment options etc. I thought I'd have a course of steroids, take something for maintenance and be all fixed :-(
Little did I know! Ha ha
Thank goodness you were diagnosed. I hope they are able to come up with a plan soon.
As for Humira injections - I believe the new formulation of Humira is already out in the UK, so they shouldn't hurt much. They are now supposed to be much better - no burning like before. They have taken out the preservative that used to cause the burning pain when injected.
As for Humira injections - I believe the new formulation of Humira is already out in the UK, so they shouldn't hurt much. They are now supposed to be much better - no burning like before. They have taken out the preservative that used to cause the burning pain when injected.
Oh that's good to know, thank you! This is why this place is such a wealth of knowledge
Yes exactly so I am really not sure what to suggest when the UK's system it to trial you on a biologic for a year and if it works, stop your funding so you can no longer have access to it. We get no say and cannot force the NHS to keep funding for it. If in remission we would lose our eligibility for the drug. :yfrown:
Something I read recently:
"It's important to remember that the NHS isn't a free service, offered by a benevolent government. We have paid for it with our taxes and National Health contributions - it's a publicly-funded, national, health insurance scheme. That's why it's such flagrant theft when the government remove services or sell them to private companies. The government want us to use the term "free" to describe it. That way when they take it away it won't appear to be such a criminal act."