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Thanks hun. I just wish my pain meds would work. I clearly need something else but when I try they just bundle me off to hospital. I'm going to have to try tomorrow though, I've not been able to sit straight all day.
 
Hello valleysangel,
Haven't you tried to adapt your food to the symptoms. I think it dépends on each individual but I made my own food list and I can say that it made a difference for me when associated with corticosteroids.
 
I am so sorry to hear of all that you are going through. I don't understand why they want to put you through another scope( as it is invasive) when they already know you have inflammation. Why not just treat you?
Sounds like they want to make money on unnecessary tests. Colonoscopies are hard on the body as it is, especially with the prep. Every time you drink the prep it wipes out lots of beneficial flora in the gut. I just do not understand these doctors. I would understand if you had not had a scope in years, but they know you have Crohn's and they know you have pain. They should just treat you and see if you get some relief.

I have almost but given up on western medicine. I am not even diagnosed as of yet. I have been having intestinal issues for over three years now. Tests I had were negative( my last colonoscopy was 2 years ago). However, just in the last three months I have felt just awful. I had my primary care doctor do a stool test and it showed elevated Calprotectin level( 384). My GI doc just blew it off and said it was likely IBS related( he said since my scope was clear two years ago he is no overly concerned). Well I went ahead and ordered a comprehensive stool test myself ( DNA PCR stool test) and it showed also elevated Calprotectin levels, High SIgA levels and positive for Candida overgrowth). Also higher amount of fats found in my stool as well. I also asked my primary care doc to do a C-reactive protein blood test on me and that was elevated ( normal is less than .80) I was at 1.55

This is ridiculous that I am having to do all the leg work and investigating myself. I have other chronic health issues as well( IC of the bladder) and chronic fatigue issues. I know from experience that doctors really are clueless when it comes to ANY kind of chronic illness.

Anyhow, sorry to have gone off an a rant there. I hope you can get some help soon so you can start to feel better. I just do not think they should be making you go through another scope this soon when they already know you have Crohns. They should be focused on treating you instead. Hang in there. Big hugs to you.














valleysangel92 said:
Hello everyone, apologies for the absence lately.

After my scan showed inflammation my consultant and IBD nurse said they felt that my crohns is definitely active and that biologics are my only real treatment option. With this in mind, they gave me some information leaflets and told me to see which one I preferred. They referred my case back to the MDT meeting, but this seemed to be a mere formality since last time we were asked to provide proof of a flare and now we had..surely they couldnt have a problem this time right?

Well guess what. I was wrong.

I got an email yesterday from my IBD nurse saying that they now want me to have another scope with biopsies.. I emailed back and said that this has upset me a little since my last one was really painful and it didnt even pick anything up. She responded saying that they need to get tissue biopsies this time (dont know the difference between these and the ones they usually take?) and that she will arrange for my consultant to do it at their center. Dont worry she says, they will sort it.

Now dont get me wrong I love my IBD nurse, she's been amazing through out this whole thing and always supported me and believed me when i tell her something isnt right. My consultant has also been great, hes a no messing kind of guy. If the patient says they dont feel well then he takes notice and does everything in his power. He has always said that if I'm in pain it means they need to change what they're doing.

So I have no worries about them. I respect them and I trust that they are and will continue to do everything possible to help.

However, I must admit that i am more that just a little upset. My team keep pushing to get me treatment, and the mdt meeting said show us the inflammation.. so we have.. but thats still not been good enough. I am unsure yet if we will have to go back to them after this scope. I am hoping that if they find the inflammation in the biopsies then I will be granted biologics with no further problems. But if they do have to go back to the MDT then I am concerned that they will still say no. Which would be crushing.

I have been in an increasing amount of pain lately. The other week, my boyfriend was staying with me while my parents were away. He was sleeping in the spare room ( I had a single bed and hes 6ft ) and I had to phone him and get him up at 7 am because I'd been crying in pain for nearly four hours and couldnt take it any more. He wanted to phone me an ambulance but I refused and self medicated etc.. I like to think I handle pain pretty well, but that was beyond. Ever since that my stomach hasnt really settled properly, the pain goes a little but then comes right back, and I don't know if i can deal with that another 3 months.

I have tried to be patient, i know these things take time and they have to make sure they check everything, but surely after everything I've been through they should have enough information to do something.

The waiting lists for urgent scopes are around 3 months. 3 more months of horrible pain that makes it impossible to function normally. Surely that's not right? My IBD nurse says my GP should help me with pain management, but they either act like i'm looking for drugs or they panic and send me into hospital. I'm also pretty sure I've been bleeding a little. As I've been seeing small amounts of blood in my underwear. I originally assumed it was periods starting but then nothing came. I'm not 100% sure on where it came from but I have seen blood come out before so im reasonably confident.

Apart from all that, the thought of another load of prep when the last one made me violently sick and I had to be put on fluids plus another scope so soon after the one that went wrong really makes me nervous. I have always found scopes very painful, and I certainly wasnt sedated very well the last time. I know my nurse says she'll get it with my consultant this time but I don't know if she can 100% garuntee that as it was meant to be with him last time and i ended up with someone else. I will be asking if i can get a different prep at the very least and maybe more sedation if thats possible.

I know all this is just a part of IBD and I know I should be used to it, but right now I really feel like I need a break. I'm so sore, barely sleeping and my appetites all over the place and its been like this for the majority of this year if not longer.

I don't really know where I'm going with all this. I just needed to get it out to people who understand. I have an appointment with my nurse next week and have lots of questions to ask. Most of all i just want some relief from this pain. I really dont see that as being too much to expect.

I'm going to try and make a doctor's appointment tomorrow to sort out some pain relief. I just hope they don't send me to the hospital again -_-.
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Ihurt said:
I am so sorry to hear of all that you are going through. I don't understand why they want to put you through another scope( as it is invasive) when they already know you have inflammation. Why not just treat you?
Sounds like they want to make money on unnecessary tests. Colonoscopies are hard on the body as it is, especially with the prep. Every time you drink the prep it wipes out lots of beneficial flora in the gut. I just do not understand these doctors. I would understand if you had not had a scope in years, but they know you have Crohn's and they know you have pain. They should just treat you and see if you get some relief.

I have almost but given up on western medicine. I am not even diagnosed as of yet. I have been having intestinal issues for over three years now. Tests I had were negative( my last colonoscopy was 2 years ago). However, just in the last three months I have felt just awful. I had my primary care doctor do a stool test and it showed elevated Calprotectin level( 384). My GI doc just blew it off and said it was likely IBS related( he said since my scope was clear two years ago he is no overly concerned). Well I went ahead and ordered a comprehensive stool test myself ( DNA PCR stool test) and it showed also elevated Calprotectin levels, High SIgA levels and positive for Candida overgrowth). Also higher amount of fats found in my stool as well. I also asked my primary care doc to do a C-reactive protein blood test on me and that was elevated ( normal is less than .80) I was at 1.55

This is ridiculous that I am having to do all the leg work and investigating myself. I have other chronic health issues as well( IC of the bladder) and chronic fatigue issues. I know from experience that doctors really are clueless when it comes to ANY kind of chronic illness.

Anyhow, sorry to have gone off an a rant there. I hope you can get some help soon so you can start to feel better. I just do not think they should be making you go through another scope this soon when they already know you have Crohns. They should be focused on treating you instead. Hang in there. Big hugs to you.
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Since your GI isn't concerned, but you still are, what does your primary care doctor say about your elevated test results?
 
Hi 2thFairy,

Well that is just it, my primary care doctor did not even know what the stool calprotectin test was, I had to ask her to test for it. I then brought those results with me to my GI doctor. He just seemed nonchalant about it saying that it was some elevated, but that he was not overly concerned because he did a colonoscopy two years ago only and all was normal. He said there may be some low grade inflammation, but that IBS can cause that as they are finding out. I mean don't get me wrong, he is a nice doctor, but I just do not know what to think. I am hoping he has like 35 yrs experience and is head of the GI department in the hospital( and it is a top hospital here). It is just that everything I am reading says that IBS does not elevate Calprotectin in the stool usually and if it does, it would be very slight. Mine was 384 and normal is 162 and under.

I have not even told him about the elevated C-reactive protein yet. My primary care doc who ordered it on my request is on Vacation for all next week so I wont be able to go over that with her until she gets back. I just got the results from the nurse and she is not sure about it. They said normal was under .80 and I was at 1.55. I am not sure how elevated that is.

It is just all very aggravating:frown:
 
jacques.debouaille said:
Hello valleysangel,
Haven't you tried to adapt your food to the symptoms. I think it dépends on each individual but I made my own food list and I can say that it made a difference for me when associated with corticosteroids.
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Hi, I actually did EEN for almost 8 weeks, and felt sick pretty much all the time on it. I do adapt my diet, I know what sets me off and I avoid it but unfortunately that isn't enough to control things for me. I am a coeliac as well, so I'm used to strict diet control. Even with all my diet changes and watching the amount of fibre etc I still get severe pain and sickness etc. I know diet is very helpful for some but for me it just isn't enough.
 
Ihurt said:
I am so sorry to hear of all that you are going through. I don't understand why they want to put you through another scope( as it is invasive) when they already know you have inflammation. Why not just treat you?
Sounds like they want to make money on unnecessary tests. Colonoscopies are hard on the body as it is, especially with the prep. Every time you drink the prep it wipes out lots of beneficial flora in the gut. I just do not understand these doctors. I would understand if you had not had a scope in years, but they know you have Crohn's and they know you have pain. They should just treat you and see if you get some relief.

Anyhow, sorry to have gone off an a rant there. I hope you can get some help soon so you can start to feel better. I just do not think they should be making you go through another scope this soon when they already know you have Crohns. They should be focused on treating you instead. Hang in there. Big hugs to you.
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My GI and IBD nurse are trying to get me treatment. We've already tried immunosuppressants which haven't worked for me. They agree that my only real option is biologics. But it's not just up to them if I get them.

They are very expensive and quite risky meds and in the UK there are strict procedures they have to go through in order to gain access. With biologics they have to go to multi disciplinary team meetings which are made up of other doctors and surgeons with knowledge of IBD. They are the ones who decide who gets funding and when.

My IBD nurse has told me that they need to get tissue biopsies this time. I am hoping that they just want these as a base line so they can monitor my progress and that once they have them ill be allowed to start the biologics. I will be seeing her on Wednesday and I will be asking her then if they intend to start me on them after the scope or if it will go back to the MDT again.

It's a frustrating system and believe me the last thing I want is another scope. But if doing it will garuntee me the biologics then it's worth it. Obviously I don't yet know if this is the case but once I have seen my nurse I will come back and update.
 
Oh ok, I see. It is a bit different here in the States. They will give you a script for the medications, but then you have to fight the insurance companies to pay for them. My friend was prescribed a medication after getting C-diff ( Vancomycin) and her insurance would not cover it. They charged her $722 for a 30 day supply! She could not wait for them to argue with her insurance company because that would likely take weeks to get an approval so she had to pay for it using a credit card. Our system is so messed up over here too.

I hope you will be able to get the meds you need in order to feel better. My heart goes out to you. Hang in there.. Big hugs.
 
It doesn't happen with every med, all the other meds I've needed I've been given by my IBD team or gp or whoever. It happens with very expensive meds or meds with high levels of risks and biologics count as both hence the need for the meetings.

It is frustrating that they are asking for more tests when we've proved I'm in a flare, and I really do hope that it's just a box they have to tick . I don't know what I would do if they could still say no. I'll get all that cleared up at my appointment though.

On another note I've got pain management at least. I went to the gp Friday and they gave me some long release tramadol and told me to regularly take paracetamol (telynol) as well. If they work well I could get them added to my repeat script so I get them all the time.
 
We have to sometimes tick boxes for dx or treatment like biologics over here with our health systems as well.

I've noticed several members whose GIs ha e performed tests or trialed other meds in order to tick boxes for insurance companies to approve biologics. Usually at that point it is a forgone conclusion the biologic is needed and warranted so I hope the same it true for your upcoming scope.

Hope things are improving soon!
 
Thanks clash. I really hope that's the case! My team have been saying for a couple of months that I need them but the mdt said not enough evidence originally then we got the scan showing inflammation so I am hoping it's going to be that way. It's so exhausting going around in circles.

Thankyou
 
Big hugs
Ds started biologics about 4 months prior to the new rule has to fail all other drugs and prove its needed here. Otherwise I know the process would have been extremely drawn out.
Ds also has tramadol for his arthritis pain.
Just know it is classified as addicting here in the U.S.
It can als make you feel spacey .
Have only given it to Ds once
He broke out in hives /rash so we were advised to only try it again if absolutely necessary .
 
My younger daughter has been using Tramadol for quite a while now - it definitely does make her feel sleepy and sort of out of it but it also does help with pain. I don't think she would be functioning at all without it. She found that the extended release didn't work as well for her as the immediate release Tramadol, but of course, everyone is different.

My older daughter has also used it on and off and had absolutely no trouble weaning off it when the disease was brought under control.

Good luck with the biologics - really hope things improve soon and they can figure out a treatment plan for you!!
 
my little penguin said:
Big hugs
Ds started biologics about 4 months prior to the new rule has to fail all other drugs and prove its needed here. Otherwise I know the process would have been extremely drawn out.
Ds also has tramadol for his arthritis pain.
Just know it is classified as addicting here in the U.S.
It can als make you feel spacey .
Have only given it to Ds once
He broke out in hives /rash so we were advised to only try it again if absolutely necessary .
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Here you can get straight on biologics if you're very severe and the only other option is surgery (although you still have to go to the mdt) otherwise we have to show that other treatments aren't viable. For me immunosuppressants caused bone marrow suppression so I qualify that part easily. It's just a case of getting them to accept I'm flaring now.

Thanks for the warning re tramadol. I've had the standard release before but at a lower dose. I'm being watched pretty carefully so hope to avoid any problems. I had to sign for it at the pharmacy as it's controlled here now too.
 
Maya142 said:
My younger daughter has been using Tramadol for quite a while now - it definitely does make her feel sleepy and sort of out of it but it also does help with pain. I don't think she would be functioning at all without it. She found that the extended release didn't work as well for her as the immediate release Tramadol, but of course, everyone is different.

My older daughter has also used it on and off and had absolutely no trouble weaning off it when the disease was brought under control.

Good luck with the biologics - really hope things improve soon and they can figure out a treatment plan for you!!
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I've had the standard release ones before but always found they wore off very quickly. So the Dr suggested trying a higher dose but on extended release to see if that's any better. I've been on it for a few days so far and I'm definitely feeling some relief. I slept last night for the first time in 2-3 weeks.

My doctors are good at watching me with meds like this, and I only ever take them when things are particularly bad so hopefully I won't have any weaning problems.

Thankyou. I will give an update once I've seen my nurse and know more about where I stand.
 
Feeling so wiped out today. I had to go out this morning and pick up some things for my mum's birthday, I was only out an hour but felt like I'd run a marathon when I got home. My legs are like lead, my head aches and I just feel totally drained. I have no appetite at all, there's no hunger there.

Tomorrow can't come quick enough. I seriously hope they have some answers for me.

It's going to be a long few months waiting for this scope.
 
I hope they have some answers for you too! I truly hope all goes well gor you tomorrow and everything is quickly approved for you to move to the next treatment! Hugs!
 
Hello everyone,

I've just got back from my appointment with my IBD nurse.

The colonoscopy is basically just a formality and she can't see any reasons why I wont be getting biologics. The MDT meeting has said that they don't actually have a problem with me going on to the next level of treatment so there really shouldn't be any problems. She says my consultant is convinced so if anyone does say anything then they will sort it out.

She has specifically requested that my own consultant performs the scope this time as his procedures are always excellent and she feels I will be much more comfortable. She has also requested that I get given Picolax and that they do the scope within the next six weeks (we'll see).

She will see me in 7 weeks when she hopes we will be able to discuss start dates etc. The biologic I am getting is Inflectra. Its the synthetic version of infliximab which all new biologics patients at my hospital are getting tried on first. They haven't been using it for very long in comparison to the other drugs but she says they have some very promising results from it. It works just like infliximab and all the side effects etc are the same.

My screening all came back good, I have no sign of infection or anything like that. I just need to get a Hep B shot so she's writing to my GP to get that arranged.

She also thinks we should try a different pain control and has suggested Morphine Sulphate (MST) as she thinks this will work better for me. She says that the tramadol could be contributing to me feeling so wiped out and because the MST works in a slightly different way and therefore may suit me better. She will be writing about this as well but I already have a review with my GP on friday (fibro related) so I will ask then to see if she's willing to give it a go.

I'm feeling very relieved and hopeful that things are finally turning around and I'm being listened to.

Have I ever mentioned how great my nurse is?
 
Glad you had a good appointment! My daughter has been on morphine sulfate and actually it worked a lot better for her than Tramadol (it is stronger than Tramadol though, so that wasn't a surprise). It still made her sleepy, but less so and she didn't have any other side effects from it.

Vey cool that they'e giving you Inflectra - that's not being used in the US yet!
 
Thankyou both :). Honestly I'm so relieved. Don't get me wrong it's a big step but it's been a long time coming.

Maya- inflectra is pretty new here too, I think it's only been in use a few months. They say it's very promising though.

Next year the patent for humira ends too, so my nurse says there could be a biosimilar in the pipeline for that soon too. Which means if inflectra doesn't work then they have more to play around with than ever before.

I'm hoping I'll get the mst tomorrow. Not sure how willing the gp will be to prescribe it but hopefully there won't be any issues as it's come as a recommendation from the nurse.
 
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Hi everyone. All went well at the doctors. We're keeping the gabapentin the same for now as it seems to be working well.

Regarding the MST - My GP didnt want to just jump in and guess a dose since she didnt want to give me something thats too low and it be uneffective or give me too much and it wipe me out, so she's given me some oramorph to start off with. Its 10mg up to every 4 hours, and I have to record how much I'm taking. From this she will calculate the dose I need per day and this will allow her to work out the correct dose of MST ( which is slow release). We will have a follow up on the 5th October.
 
Hello all,

Everything went fine on Monday, I have MST 15mg tablets to take every 12 hours. I have to take them by the clock and not wait for the pain to set in as they don't work instantly. I also have the Oramorph on a repeat prescription which I am to take for break through pain.

I have just got back from my first Hep B jab, have another booked for 4 weeks today. My poor arm is going to go on strike by the end of the month, I had my flu jab friday, and am due my B12 on the 21st too. Lush!

I still havent recieved my follow up letter for Allyson though. I usually get it on the first friday or saturday after I've seen her, so this is bugging me a bit. Usually I rebook at the desk on my way out but they said they couldn't do it because it was over 6 weeks (allyson thought they could do it if its under 8) and told me I'd get it through the post but there's nothing which is giving me a horrible feeling that the admin people have fiddled with the date (they have a habit of doing that, if a clinic is a bit full they'll move your appointment back rather than fit you in despite the medic specifically requesting that date). I'll give it another week and then try and chase it up, once I've figured out who I should chase it up with that is.

No news on the colonoscopy either, although that's really not a surprise.
 
Hello everyone,

I mentioned earlier in the thread that I am expecting to have reconstruction surgery on my jaws sometime in the future, once bracework has straightened out my teeth.

I had an appointment with my orthodontist yesterday and discussed with her the matter of going on biologics. As some of you will know, you have to have a 2 week gap either side of the surgery with any biologics. Being on inflectra this hopefully won't mean skipping a dose, just tweaking it a little.

She thinks that once we have all my gaps from extractions closed up she will get into contact with my consultant and discuss the viability of going ahead and the logistics of completing the surgery. It is possible that they may decide at the time that my health is not stable enough to go ahead, or that there is too much risk of infection being on the biologics ( as the biggest risk with this op is infection, since you can't really cover your mouth).

At the moment she thinks it is acceptable as I have been told by my IBD nurse that if I need/want the surgery then they can work with it so she is happy to proceed for now.

Usually they would book the surgery and then contact you 4-6 weeks before with your date but this is obviously not a viable option for me, so they are going to provisionally put me in for next summer so that we all have as much notice as possible. They will liaise closely with my gastro team and myself to make sure that the process is as safe as possible and that if anyone is not happy they have the opportunity to say so.

My othrodontist has also said that we should consider changing the operation. Originally I was supposed to be having double jaw reconstruction - moving my top jaw up and my bottom forward, but this is a very complex operation. We had a little discussion and she brought up the idea of only having surgery on my bottom jaw as this is what bothers me the most anyway (I cant bite properly because my bottom jaw is too far back for me to tear food). This would make the operation less complex and decrease risk of infection.

It's still sinking in at the moment but I am feeling ok about things for now. Its going to take a while to get used to a different surgery proposition but I think it would be the right balance between correcting my bite and the appearance of my mouth and keeping all risk to a minimum.
 
Took me a bit to read through all this and understand it. Sounds like they're doing pretty good and have your health and everything else in mind (which is a very good thing). I hope all works out smoothly for you. I know you've had lots of steps forward and backward lately. Hopefully the forward steps will continue for you with this (I think you understand where I'm going). Looking forward to seeing how you're doing!!!! Lots of hugs. :)
 
It's a lot to get your head around thats for sure. I'm not seeing them again until December now so I have a while to talk to my IBD team and everything to make sure they are happy with things and see if there's anything they want me to find out. I do understand where you're going :) .

I got a letter this afternoon asking me to call my drs and make an appointment with one of the GPs. Doesn't give any clue as to why, so I've called and managed to get an appointment for tomorrow morning (which was very lucky). I wish they'd give some clue about the reason, I hate being unprepared.
 
Hello,

I've not long got in, the appointment was to discuss the results of my DEXA scan. The overall result is osteopinia as before. My back / lumbar region is the same as before but my hips have deteriorated by a further 4.6%. I don't know a great deal about all of this but that seems quite a large amount to loose in 3 years particularly as a 22 year old with an excess of calcium.

They want to do some bloods just to check there are no other underlying conditions which could be contributing to this (because apparently Crohns, Coeliac and my body's inability to correctly use calcium just aren't enough or something). I'll be having those done tomorrow as I have to go down for my B12 anyway

Edit - The doctor gave me a number to call to check up on my appointment, it put me through to my consultants secretary who was able to check the system. I'd been put on the follow up waiting list, with a target date of the 11th November but it seemed like it could of been after that date. I explained about being on steroids and being close to running out (I have enough to get up to the 11th and a couple of days after but thats all) and she said that's fine and they'll sort it all out for me. It wouldn't of been a problem if she'd said it wouldn't be that date, as I could have emailed my IBD nurse to get a prescription sent but I needed to know if that was the case.
 
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valleysangel - sorry to hesr you are sick. I know it's horrible to wait months for a test while in pain just be able to be treated! And you're right, the docs don't realize how depleting and awful these procedures are. I see you are about to, or are already on biologics. I did those as well, but the therapy that worked best for me (and has kept me in remission for almost a year) turned out to be AntiMAP therapy. Since you are a moderator, I assume you've considered it, but just wanted to give you a real, live story of someone who's been successful. Honestly, after 25 years of having Crohns, I never knew I could feel this good. I realize I've been sick for most of my adult life, but just dealt with it as if it were normal. There is also a way to get tested for MAP prior to starting treatment if that is of any interest. I know each person is different with their treatment decisions and comfort level for therapies like this that haven't quite been widely accepted, so I wish you luck with whatever treatment you choose and hope for a full recovery.
 
Hi there

I don't know how things work where you are. Are you in R.O.I? Unfortunately at the moment it's still very much in early days for the map vaccine here. It's basically still in trial criteria so you have to show that no conventional treatment is safe or effective for you. To be honest I don't think it's even available in South Wales yet, I don't know of anyone close to me being on the programme. Even in England where the trial was started you have to pass very strict criteria and try all conventional medicines first before your doctor can apply for you to be started on anti map.

I am glad to hear that you have found something that is working for you. It is obviously early days for this treatment but from what I've seen it looks like promising progress. I hope it continues to keep you feeling well. For the moment i am willing to give the biologics a go, they are big medications I know but that's not too much of a problem for me. If it got to the point that I needed it of course I would go for the vaccine but it's not really an option for me at the present time.
 
Hi valleysangel - I'm in the US. I know the vaccine is still years away, so I have an integrative health doc who agreed to prescribe AntiMAP. I take clarithromycin and rifamipin, plus low dose naltrxone. I was also on levofloxacin, but the side effects were intolerable. I had already failed the biologics though, so the risk was worth it for me.

I think there's a doc in London, Jeremy Sanderson, who uses AMAT. Hopefully the RedHill trial will be done soon and this therapy will be an easy option for anyone who wants to obtain it. At the end of the day, you have to be comfortable with whatever you choose regarding your own treatment. I wish you only the best and hope you are well soon!
 
Ah right, things are a lot different to the US here, it's harder to get treatments like LDN etc, partly because of the red tape in the nhs.

The use in London is promising but unfortunately that's a long way from me. It takes a while for those things to filter through and certain parts of the nhs are run differently in Wales compared to England. Thankyou. I hope you continue to feel well
 
Hello everyone,

Finally have a little progress, my follow up has been confirmed for the 11th November, and I finally have a date for my colonoscopy. I've just booked it in for the 24th November. I know that isn't within the 6 weeks I was originally put down for but the lovely lady on the phone said it's on the system for it to be my consultant performing it and that I will be having picolax not moviprep (which makes me very sick).

I am still getting a high amount of pain but the morphine is helping considerably and I think I may even have put a small amount of weight on!

I am feeling rather nervous today as I have an assessment tomorrow to see if i will keep getting employment support allowance, I dont know what your equivelant is but its an allowance for people who have illnesses that prevent them from working or make access difficult. Until now I have just been sending in sick notes from my doctor but they only allow that for the first few months now. If I can't convince the assessor that I'm not well enough to work then they will be stopping my payments. There are many stories of people not being believed in these assessments, and getting their money stopped unfairly. I am just hoping I get someone fair.
 
I hope the assessment goes well and everything comes out in your favor.

Glad you have the colonoscopy booked and I hope things go well until then!
 
Well...I posted something already but apparently it didn't take. So, here we go again!!!

Good luck tomorrow and with your fun time on the 23rd and 24th!!! It's about time things start turning around for you...

Sorry to hear you're still dealing with pain. :( Lots of hugs are being sent your way... :)
 
Thankyou both. I really hope this is the last leg of it all now. I need a break already.

Anyways, today seemed to go alright, she was very attentive and seemed to be taking in everything I was saying to her. She seemed to understand about urgency and the risk of accidents etc and the difficulties of getting out and about with the combination of crohns and fibro. The consultation ended a little weirdly though, we were talking about how I don't go out much except for appointments and then she said she needed to make a phone call and then came back and said I could go which was odd. But I'm hoping it'll be good news.
.The department in charge of all these is notoriously slow so it could be a while before I get told anything.
 
Tonight is the first time in a while that I have lost control of my bowels. I was hanging up laundry and felt an urge but didn't make it on timen
 
Hi everyone,

I had my follow up yesterday, it went alright, not much new to report as everything is dependant on my scope. Steroids are the same, pain meds the same, ferritin is 5 so thats low and has been retested and I've been told to drink more milk.

I've been asked to email my ibd nurse to remind her once I've had the scope so that she can look at the results and get the ball rolling to start infusions. Once she has the information she will pass it on to the infusion nurse and get her to liase with me.

I will then have a follow up with Allyson in 4 weeks time to chat about everything and arrange my consultant follow up (there has to be a consultant review after the first 3 infusions and because the out patients lists are crazy its better to organise the follow up well in advance or I'd be left without infusions).

I finally have a bit of good news today, my ESA assessment obviously went well because I suddenly had an extra payment that i wasnt expecting. I called them to check it wasn't a mistake and they informed me that they have put a medical note on my claim and I have been put into the support group which means a higher rate than I have been receiving so far. It also means I do not need to look for work or participate in any work related activity for the foreseeable future so I will be able to focus on getting better and enjoying the few good days.
 
If your trying increase your iron try to avoid milk either side of your iron rich meals as milk makes the iron less available.
 
Catherine said:
If your trying increase your iron try to avoid milk either side of your iron rich meals as milk makes the iron less available.
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I've been told to drink more milk because my phosphate is low, sorry I should of made that clearer in the original post. I know thats counterproductive in terms of iron but my IBD nurse seems to think my phosphate level is more of a concern at the moment as my hb is just about stable. To be honest I'm usually told to be careful with milk due to high calcium but it's ok in short bursts.
 
valleysangel92 said:
Hello everyone,

Finally have a little progress, my follow up has been confirmed for the 11th November, and I finally have a date for my colonoscopy. I've just booked it in for the 24th November. I know that isn't within the 6 weeks I was originally put down for but the lovely lady on the phone said it's on the system for it to be my consultant performing it and that I will be having picolax not moviprep (which makes me very sick).

I am still getting a high amount of pain but the morphine is helping considerably and I think I may even have put a small amount of weight on!

I am feeling rather nervous today as I have an assessment tomorrow to see if i will keep getting employment support allowance, I dont know what your equivelant is but its an allowance for people who have illnesses that prevent them from working or make access difficult. Until now I have just been sending in sick notes from my doctor but they only allow that for the first few months now. If I can't convince the assessor that I'm not well enough to work then they will be stopping my payments. There are many stories of people not being believed in these assessments, and getting their money stopped unfairly. I am just hoping I get someone fair.
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I am hoping the best for you. Keep us updated.
 
It's prep day tomorrow, I have to start at 8am and will be on liquid only all day, which is unusual as my appointment is at 3pm the next day. Usually with an afternoon appointment in the uk you'd be allowed to eat lunch and then start the prep in the afternoon. This is going to seriously mess up my meds and I really don't do well without food but needs must. Hopefully the whole thing goes quickly and we'll finally have the results we need to get things moving
 
valleysangel92 said:
It's prep day tomorrow, I have to start at 8am and will be on liquid only all day, which is unusual as my appointment is at 3pm the next day. Usually with an afternoon appointment in the uk you'd be allowed to eat lunch and then start the prep in the afternoon. This is going to seriously mess up my meds and I really don't do well without food but needs must. Hopefully the whole thing goes quickly and we'll finally have the results we need to get things moving
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Wish you the best.
 
Prep didn't go too bad, made me sick this morning but other than that handled it okay. My body is obviously struggling with the lack of food though, I have a horrible headache that just won't budge. Hopefully I'll get some decent sleep tonight. Need tomorrow to hurry up, I hate waiting around for appointments.
 
That's the part I struggle with is the prep and the lack of food. Glad you're doing alright otherwise. Here's a hope for you that tomorrow will get here soon and it'll all be over with. Sending lots of hugs.
 
It's all going so slowly, it's really dragging on now. I feel like today has been twice as long as it should have been. Can't wait for this time tomorrow night when it will all be over with.
 
Hello all, colonoscopy was a success, I still had quite a lot of pain in places but my consultant managed to help it along with gentle presses on my tummy which helped.

They got into my terminal ileum and found some ulcers and inflammation. He says it's not severe but that we should take into account that I am taking medication already (budesonide and pentasa). My GI said that they will look at the biopsies with the microscope but from what he could see it looks like crohns has returned at my surgery site. I told him that this is actually a relief as we finally have something to show.

I'll be seen by my ibd nurse in 2 weeks and have just emailed to remind her I've had the scope like she asked so hopefully things can get set up now.
 
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valleysangel92 said:
Hello all, colonoscopy was a success, I still had quite a lot of pain in places but my consultant managed to help it along with gentle presses on my tummy which helped.

They got into my terminal ileum and found some ulcers and inflammation. He says it's not severe but that we should take into account that I am taking medication already (budesonide and pentasa). My GI said that they will look at the biopsies with the microscope but from what he could see it looks like crohns. I told him that this is actually a relief as we finally have something to show.

I'll be seen by my ibd nurse in 2 weeks and have just emailed to remind her I've had the scope like she asked so hopefully things can get set up now.
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Glad you might finally have a diagnosis.
 
I was already diagnosed, I've been diagnosed nearly 4 years. They'd just been having trouble pinpointing the inflammation in this flare, my ibd team said all along I was flaring but other doctors at the hospital kept saying they didn't have enough evidence (despite high inflammation markers in blood and stool samples plus a scan showing inflammation ) which meant they couldn't advance me onto the next treatment. The scope today was basically a way for my gi to get past red tape so I can have the inflectra.
 
Feeling so poorly today, I always feel rough after scopes but to make matters worse we've had no running water for the past 2 days due to a damaged water main further down the valley. They are working to repair it but its one of the high pressure main pipes so it's a lot of work and obviously they have to protect the safety of the workers as well. The whole day yesterday I was on my own at home with no water (my parents were in work). Luckily my dad brought some home and I managed to contact the water company and arrange some bottled water from them but it still means we are limited. We can't flush the toilet properly because of the amount of water it takes and we cant heat our house either because we have an old fashioned coal fire with a back boiler, which means there has to be water in the system before the fires lit. It's freezing here and I badly need a hot bath but there's no sign of the water coming back on soon.

I've not really slept since tuesday, I sleep on my belly but at the moment any pressure makes the pain worse and I cant sleep any other way because it sets everything else off.
 
I am so sorry, ValleysAngel, I sincerely hope that the water service is restored. And I understand about the cold, it is so cold in the UK. May you get a little physical comfort - our very best wishes.
 
Thankyou everyone, it's been a tough week, been reduced to tears a few times from the sheer amount of pain (not something I'm at all proud of, makes me feel rediculous). I'm getting quite isolated, my parents are in work every day, usually busy at the weekend and my boyfriend is still living 50 miles away, I get to see him every 2-3 weeks which considering we've been together for over 3 years doesn't feel like much sometimes.

Don't get me wrong I love them all to bits, it's this illness I hate. If I wasn't sick id of graduated in the summer and now have my first nursing job. If I wasn't sick I'd be able to travel to my boyfriend and take some of the burden off him.

I'm barely leaving the house, when I do its mostly for appointments. If I do go out I'm tired within half an hour or so and end up just wanting to come home and curl up. Fatigue is well and truly whipping me right now and the constant pain is so draining.

My stomach was slightly more bearable today but it's still very uncomfortable and I'm having a lot of trouble with my joints. My feet and hands are swelling again and my back and hips hurt constantly. I'm pretty convinced there's something other than fibromyalgia going on but don't know where to go with it. I've been seen by a rheumy and been tested for AS and RA as well as having an isotope scan to look for inflammation in my joints ( although I didn't have any swelling when they did it). I do wonder though if it's crohns arthritis, which from what I've read doesn't cause joint damage so wouldn't necessarily show on scans. It will be interesting to see if my joints recover when I start the inflectra.

I'm also getting horrible sore skin which is peeling and bleeding and my lips are swelling and almost blistering. I use 2 different lip balms every day but it doesnt make a lot of difference unfortunately. There's been a few occasions the past week or so where I've woken up with my mouth covered in blood.
 
Really hope you can get on Inflectra soon - what an awful situation.

Regarding arthritis - Crohn's related arthritis is a type of Spondyloarthritis. CCFA has a good info sheet on it:http://www.ccfa.org/assets/pdfs/arthritiscomplications.pdf

Typically, inflammation does not show up on x-rays, only damage does. Over here, a doctor would use MRI's to look for inflammation. Isotope scans aren't used much anymore, though they should show inflammation. The fact that you had a negative scan then, doesn't mean that you would have one now - the swelling and hip and back pain definitely sound like some kind of SpA.

I would try to get to a rheumatologist, if you can. And take pictures of the swelling!
 
Hi Maya, fingers are crossed!

Thanks for the info re. arthritis, I saw a rheumy in 2014 but at the time I didn't have any swelling (I did have it before the appointment but it had gone down). I tried to show him pictures but it seemed to go over his head. He just booked me in for the isotope scan and said if it didn't show anything it was fibro. They aren't very frequently used here in comparison to MRIs and CTs but are considered to be sensitive so if you get a negative one its seen as the end. I didn't even have a follow up with the rheumy, he discharged me and sent me back to my GP. The thing is I didn't have much swelling on the day of the scan and was actually having a good week in terms of joint pain.

The difficult thing about waiting so long for referrals and scans here is that often by the time you get the appointment things have settled down only to flare back up later on when there's no one to go to. Getting a new referral would take at least 6 months (minimum) by which point it'll be summer and I'll probably be doing much better. I really need them to see me when I'm at my worst, when my hands are double normal size and my knees don't look like knees any more. I try to keep photo records on my phone to track the swelling but sometimes it doesn't look nearly as bad on the photo as the real thing.

I don't know if things might be faster if I get my IBD nurse to refer me over but she referred me to gynea in July and I'm still waiting (it was only supposed to be a 3 month wait) so I wouldn't hold my breath.

What you're saying and what Fozheart has said in the past does make so much sense to me, it's just getting through the system. There's a deep family history of arthritis (both sets of grandparents, uncle with osteo, dad, mum, potentially sister etc) and my dad recently pointed out to me that my fingers aren't straight and that I should show them to someone, but I've shown them to doctors before and nothings been said.

It would be so much simpler if we could call up departments ourselves and arrange to be seen.. I know there are people who waste time but if they had a triage system they could filter out anyone who doesn't really need it, you know?

One thing that keeps coming back to me is an xray I had when I was 12, there was an abnormality on there but the doctor I was under wouldn't tell me what. The hospital wanted me to have a repeat xray to check my other shoulder but my GP refused and said he wanted to see if I'd grow out of it. I still wonder to this day what that was and if it was the start of all my problems. I'm at a different practice now so I doubt I'll ever really find out.
 
I wonder if your GP could order an MRI of your worst joints. If that showed inflammation, that would get you to a rheumatologist wouldn't it?

I really don't know much about the system in the UK, so I'm just throwing out ideas. The fact is, Inflectra should help with some sort of SpA, so hopefully once you get on it, you'll feel better.

The thing is that sometimes with arthritis, you need a combination of meds and then you'd need to see a rheumatologist. My older daughter needs an NSAID, Humira weekly and MTX to keep her AS under control. My younger one is getting a high dose of Simponi and Arava and an NSAID (which was approved by her GI). Of course, if you're planning to have kids soon, both Arava and MTX are out.

Hopefully, the Inflectra will work. I'd ask for a rheumatology referral because you don't know if things will get worse or better. In 6 months, if the Inflectra hasn't helped, then you'll be very glad of it.

Sending hugs and thinking of you!
 
Valleysangel, you mentioned that your lips are peeling and swelling. I had the same thing happen, and for me it turned out to be a B vitamin deficiency. I now supplement with B6 and B12, and my lips have gone back to normal. Have you had your vitamin levels checked lately? If not, you might want to have some bloodwork done. Like you said, various lip glosses weren't helping me at all either, what you're experiencing with your lips sounds very similar to what I went through. Fortunately though it was an easy fix, so hopefully it is for you as well. Hang in there, it sounds like you have a lot going on right now! I wish there was an easy fix for all of your pains and symptoms, but hopefully I can at least help with the lips issue.
 
Maya142 said:
I wonder if your GP could order an MRI of your worst joints. If that showed inflammation, that would get you to a rheumatologist wouldn't it?

I really don't know much about the system in the UK, so I'm just throwing out ideas. The fact is, Inflectra should help with some sort of SpA, so hopefully once you get on it, you'll feel better.

The thing is that sometimes with arthritis, you need a combination of meds and then you'd need to see a rheumatologist. My older daughter needs an NSAID, Humira weekly and MTX to keep her AS under control. My younger one is getting a high dose of Simponi and Arava and an NSAID (which was approved by her GI). Of course, if you're planning to have kids soon, both Arava and MTX are out.

Hopefully, the Inflectra will work. I'd ask for a rheumatology referral because you don't know if things will get worse or better. In 6 months, if the Inflectra hasn't helped, then you'll be very glad of it.

Sending hugs and thinking of you!
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It's quite difficult to get GPs to do an mri, they'll usually do an xray and then if they think you'll need more than that they get a specialist involved (because the person who refers you to the scan is the one whos department funds it).

Because I've already had a rheumy referals and they didn't come back with much it means it's harder now to get things moving again. They keep saying the pain is fibro. While I agree I may have fibro there's always a nagging doubt for me that there's something else going on too. There is one gp at my practice who knows me quite well and might be willing to reconsider things.

I am seeing my ibd nurse next week so I'll see if I can bring it up with her. I know when we were talking about options for my crohns she reallt wasn't keen on mtx and said they weren't going to offer that to me so I don't know if they would be happy if a rheumy offered. We aren't planning a family too soon but we will want children in a few years.
I completely understand what you're saying about a referral, you never know how it's going to go, I just wish the system was easier.

Thankyou for your responses
 
Cat-a-Tonic said:
Valleysangel, you mentioned that your lips are peeling and swelling. I had the same thing happen, and for me it turned out to be a B vitamin deficiency. I now supplement with B6 and B12, and my lips have gone back to normal. Have you had your vitamin levels checked lately? If not, you might want to have some bloodwork done. Like you said, various lip glosses weren't helping me at all either, what you're experiencing with your lips sounds very similar to what I went through. Fortunately though it was an easy fix, so hopefully it is for you as well. Hang in there, it sounds like you have a lot going on right now! I wish there was an easy fix for all of your pains and symptoms, but hopefully I can at least help with the lips issue.
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Hi Cat, I've actually got a b12 deficiency, I have b12 injections every 12 weeks to treat it, I hadn't realised this was one of the symptoms but it makes a lot of sense. I'll have to ask my ibd nurse what my current levels are like. I know my doctors will sometimes move the injections closer if needed so that's an option.

Thankyou, it's a bit one thing after the other at the moment, I'm very grateful for all the support I'm getting here.
 
Hi all, belly has been quite unsettled the last few days, lots of gripey pain that doesn't turn into anything and then bursts of intense pain. I'm just about managing to eat and I think my weight is just about holding up. I have had 3 hep b jabs now so I'm all ready for my infusions if/when I get the go ahead.

I've been sent a letter to book a follow-up with a dietitian.. two months late. I'm going to wait until I've seen my IBD nurse and figured out my infusions and then book it so I can avoid any clashes.

I see my IBD nurse tomorrow, I hopefully get the results of the biopsies they took during my scope. Last time I saw her she said that we would be looking at start dates for my infusions and going over what happens over the next few months including setting up a follow up with my consultant in about 3 months time. Since the scope showed active inflammation things should be straight forward but given how things have been up to this point I haven't allowed myself to get too excited just yet, once they say those words, then I'll be ecstatic.
 
I just got home from seeing my ibd nuse.

The biopsies have confirmed active crohns disease in my neo-terminal ileum. I know it sound odd but I am so relieved, because although me and my team have always been confident we've had a lot of opposition (mainly from doctors who didn't know me saying that I couldn't of flared so quickly after surgery). We now have absolute proof that I am flaring and that the steroids and pentasa are not doing enough.

Sooo.... my ibd nurse went to get consent from my consultant and... IM GETTING INFLECTRA!!!!

My infusions won't be started until after Christmas now but I have the infusion nurses number and need to call her on the 21st of this month to set things up. I'll see my consultant in 7 weeks time and we'll see how I'm getting on. If he's happy then ill be on them for a year to start with and then be reviewed, if things aren't going too well then we'll look at something else.
 
Not good to hear you're flaring again. But, wonderful news to hear that they've FINALLY found something in order to treat you!!!! Remember, when I was asking for that for myself? Looking forward to seeing more info about this in the next few weeks. Lots of hugs!!!! :ybiggrin:
 
What wonderful news! The Inflectra, not the flaring, though at least you know why you feel so awful. I hope it works like magic for both your gut and joints :).
 
To be honest we've known I was flaring for a good while, we've just not been able to pinpoint the inflammation which was why the mdt meeting kept saying no. But now we have definitive proof of where it's active and there are no more bariers :). Of course it would be much nicer not to be flarknf and not need any treatment but It's good to know why I've been feeling so rough for definite and have a treatment plan in place. It's also good to know there isn't something else going on. Plus it makes me feel better because my former consultant kept trying to imply that I wasn't controlling my coeliac and that's why I was ill..now I can show him that me and my lovely new team were right all along. My ibd nurse was so happy telling me I was getting it which was lovely.

Since inflectras so new I'm thinking about doing a diary, starting with getting things set up, so you can all see how it works in comparison to infliximab, do you think people would be interested in that?
 
valleysangel92 said:
To be honest we've known I was flaring for a good while, we've just not been able to pinpoint the inflammation which was why the mdt meeting kept saying no. But now we have definitive proof of where it's active and there are no more bariers :). It's good to know why I've been feeling so rough for definite and have a treatment plan in place.

Since inflectras so new I'm thinking about doing a diary, starting with getting things set up, so you can all see how it works in comparison to infliximab, do you think people would be interested in that?
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Yes.
 
Cross stitch - I can totally remember how much you had to fight. Doesn't it feel good when it pays off?
 
Hi everyone, calling tomorrow to book my first infusion, all feels very real now. Can't pretend I'm not slightly nervous but I'm definitely more happy than anything else about it. Here's to feeling like a human!
 
First infusion is booked for the 5th January! Only downside is I have to get the the hospital for 8.30 which will be a challenge with my buses but they said just be there as close to that as I can.
 
Hi all,

I had my infusion on Wednesday, was a little chaotic at first as the unit was unsure if they were going ahead (its not a dedicated infusion unit, its a discharge lounge) as the infusion nurse is still off but my lovey IBD nurse stepped in to do it. It took about 2 and a half hours for the infusion to go through and then had to wait an hour to make sure I didnt react but I was fine. The only side effect I got at the time was a slight headache but I get those anyway and it was pretty muggy in the room which doesnt help.

Allyson was very happy with the way things went and I have my next one on the 20th. Considering everything I don't feel too bad, just very tired and aching, but I think thats from the chairs and not just the infusion. Making the most of the excuse to have a PJ day.

Also I came home to a letter from my consultant confirming my colonoscopy and biospy results, he knew I'd seen Allyson but just wanted to tell me himself and let me know that if I have any questions to give them a call. Just another little touch that confirms how much better he is with me compared to previous medics.
 
Hi valleysangel.
Why is it you're having inflectra and not infliximab?
I ask because I had my third loading dose of infliximab just before Christmas and wonder why I wasn't offered inflectra instead. I'm assuming both drugs do the same thing.
Apologies if you've mentioned this somewhere, I've not read this entire thread in detail.
As an aside, I have my infusions in the day case unit and have only ever spoken to two people there having infliximab, all the others are either post op or having different drips. I have to lie on a bed, they don't allow infliximab patients to sit in a chair it's interesting how different hospitals have different regimes isn't it?
All the best, I hope this does the trick for you :)
Bunty x
 
Hello, I think it's a funding thing, inflectra is cheaper than infliximab, there isn't a huge amount of difference in the way the two drugs work and the risks are pretty much the same except that as inflectra is newer there isn't the same knowledge about length of use. I think some hospitals are just faster at introducing it than others, I know at mine they're giving it to all new biologics patients.

My infusion was done in a discharge lounge where people go to wait to be transported home or to another ward, so it really wasn't that well equipped for infusions. There were patients with infections etc mingling with people who were immunosuppressed which isn't the best idea, but the hospital doesn't appear to have a proper infusions unit. The irritating thing is that in another hospital which is actually where I go for clinics, they have a state of the art unit which is unused 3 days a week but they won't allow my ibd nurse to use it for infusions. Doesn't make any sense to me but there it is.
 
I suspected it was down to cost, so it does make me wonder why, as a new patient, I wasn't started on inflectra if it's cheaper and does the same thing. I suppose they have their reasons. I think I'll mention it when I next see the IBD nurse, just out of curiosity.
On my second infusion I had to wait four hours for them to find a pump to administer the drug! I got there at 11am as requested, the drug came up from the pharmacy at 12.30 but they didn't manage to find a pump till gone 3pm. It made an already long day even longer...
Bunty x
 
It may be worth asking, they may just not have rolled it out at your hospital yet, I know mine is one of the first in south Wales to use it. We only had 2 pumps, there were supposed to be 5 people having infusions that day but in a sort of lucky way only 2 of us turned up other wise we'd not of had enough... we didn't even have saline to mix the infusion, my ibd nurse had to get some from another ward.

A general update - I saw the dietitian today, still not happy with my weight, they want me eating more calories and want me to put weight on. I'm currently eating quite well with lots of snacks and she was happy with that but wants me to add in extra calories where possible. My weight has always been up and down, to be honest I don't think I'll ever get it totally stable, but I understand their concerns. For the moment she is happy that I at least look healthier than the last time she saw me but that was when I was in hospital so of course I look better.
 
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Happy to know that Inflectra has been infused, and you are a little better. Really do not have the technical competence to say anything about the drug, but can only hope that things would only improve from here on. Glad that you are eating well, and may the improvements continue. Best wishes.
 
Hi all,

I did feel a bit better, the pain eased off to an extent and I even noticed an improvement in my joints which is a minor miracle. I actually have an appetite too.

As we all know though, all good things must come to an end and today I will admit is that day. I had some pain over the weekend but that didn't last too long. Today though it's letting me know it's still there on no uncertain terms, I have just eaten dinner and feel as though I may as well have eaten the grater. Ow.

Thankfully my next infusion is on Wednesday, I called to give them my weight earlier and the infusion nurse is finally back so things should go nice and smoothly.

I have also finally received a gynecology appointment after waiting about 8 months. I will be seen on the 11th of February.
 
I think I may have a bit of a water infection, my stomach hurts more when I need to pee and my wee has a bit of an odd smell to it. It looks clear but I'm going more than usual and I have a headache plus an on/ off temperature. I have quite a history of water infections and this is generally how they start for me. I'll try and make an appointment with the doctors tomorrow and get it checked out if I can.
 
I couldn't get an appointment with the doctor so I had to just go down to the big surgery and get my urine dip tested. There were no signs of infection or blood or anything, which is good but means we aren't sure why I feel so rubbish. Last time I felt like this it was a UTI which was why I thought this was the problem this time. They suggested that I try and make an advance appointment while I was there but the bigger surgery is a 20 min bus ride away and is usually full of people with bugs, and I have my GI follow up tomorrow anyway so I might as well see if he has any theories before I go to the GP. If nothing comes of it or I don't feel better in a few days then I'll get an advance appointment at the surgery closer to me ( 5 min bus ride and smaller = less germs) .
 
Hello all

I saw my consultant yesterday, he thinks I've had a bit of a flu so that's why I've been feeling so rubbish. On the crohns side though things look okay, we're finally tapering the steroids (yay!). We're doing it very slowly though, we're doing one a day for a month, and then one every other day for a month. So it'll take me until the end of march go get off them but it's progress at least.
It also sounds promising for being allowed to continue with inflectra, he said he's hoping they will be able to get me off the steroids and keep me off and just maintain me with the inflectra which is great news to me :).

He said my blood count is a little low, and asked about my periods to which I explained I don't get regular ones (I'm all over the place with my menstrual cycle ) but that I do bleed heavy when I'm on. I mentioned the gynea appointment and he was happy with that, so we will see what they say.
 
Thanks hun, at least it's not an infection and I don't feel like it's a full on stay in bed for a week type flu, so I think my flu jab is doing its job and protecting me to an extent. And, I've put on weight! I'm now a much healthier 8St 7 / 55kg. Which us very good progress :).

How are you doing lovely? ❤
 
I agree. Sounds like you and I weigh about the same. Although, it's been awhile since I truly weighed myself.

All's fine here. Just the same old stress. I'm hoping to change stores and departments, work wise sometime soon though. But, for now am looking forward to celebrating our 16th anniversary in a few weeks and taking 2 extra days off then!
 
Hello all, just a bit of an update for you

I had my third inflectra last wednesday and we sped it up this time, I had it over 1 and a half hours and then was observed for a further half an hour before being allowed to leave. There were no problems which is great news and my next is booked for 8 weeks time.

I also have news about my jaw surgery, I recently saw my orthodontist and my teeth are just about ready, so at my next visit in April I will have xrays and impressions taken of my mouth and from there I will get an appointment to meet with the surgeons and talk in more detail about the operation and what that will entail. It's taken a very long time to get to this point and I am both excited and nervous in equal measure.

I currently have some sort of annoying recurring virus or infection, for the last few weeks of january/beginning of feb I had a sore throat, achey bones, lethargy and chestiness. It seemed to clear up so I was OK for my infusion but it seems to have come back again now so I am debating seeing my GP. The guidelines say I should seek advice for any sore throats that come with a temp, and my glands are also swollen, but it feels like rather a waste of time.
 
Get checked out
Annoying yes
But being admitted for Iv abx or picc line because the sore throat /ear infection etc got too bad quickly more than annoying

Ds constantly has to get throat swabs for strep but Ped insists and since he had one big scare mastoiditis while on biologics
Every agrees checking and catching things very early is a much better plan
 
Thanks hun, I get that and instinct says the same if I'm being honest! I think what holds me (and I lot of NHS patients) back is that we're constantly told that we over use things like the GP for coughs and colds etc, and there's nothing they can give us, so get on with it. There are always warnings about viruses costing the NHS silly amounts etc and if I go and it is just a cold, then they make me feel like an idiot.. but then we get meningitis scares with kids dying because parents feel like they are wasting doctors time! You are totally correct though, much better than getting sicker.

I won't get anywhere now tonight as its early evening here but will call them in the morning. I have had similar episodes 3 times in 2-3 months now that I think about it, so I'm either not fighting it off or I'm really unlucky and keep catching stuff.
 
Anyway you can see the same GP
I know with Ds we have 2 peds that "know" his history and that is who I have him see even if it's at a different office
That way no "your kid just has a cold speech" with random Ped btdt
Instead I get "thank you for bringing him in and if xyz occur call us immediately "

Good luck
Hope it's a minor cold though ;)
 

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