# My current situation



## valleysangel92

Hi all. 

I know it's been a while since I posted an update so I thought I'd let you all know what's going on with me. 

I'm currently flaring, it started with a 2 week hospital stay at the end of June that left me on steroids and pentasa. When I left hospital I was on 30 mg of prednisolone. 

In the weeks since I've tried to reduce my dose,  supposed to be going down 5mg every two weeks,  but when I got to 15 things rapidly went down hill, and at 10 I was right back to square one, so I'm back up to 20 mg until I get to see my consultant on the 26 th. 

At the moment, I am in daily pain and struggle with constant fatigue. Everything I do is so much harder than it used to be. My stomach hurts all the time, and I have to use strong pain meds (tramadol)  almost every day which some of you will know isn't something I do lightly, but without it my pain score goes up to 7/8. I'm also getting a new pain, which is on the left side under my ribs which is worse every time I eat. Sometimes this goes away after about half an hour. Other times it turns into the most excruciating cramps that have me doubled over unable to sit up or walk. I also get frequent nausea and a feeling of having things stuck in my throat. 

As a result of this flare, I have been declared unfit to take up my place at university and therefore my place will be withdrawn. So I'm now trying to figure out what to do next career wise too. For the moment I'm focusing on getting this under control and then I might go down the child care route for a few years while I get everything stabilised. I'm due pretty major oral surgery next year or the year after too so I need to keep that in mind when I plan. 

I don't feel like the pentasa is doing much for me. From the way my body reacts when I try to taper the steroids I'd say it's those that are currently keeping me stable. I have been referred for a colonoscopy, but that was in July, and it was marked urgent, and I've not heard anything yet, so that's not much use. 

I think the plan may be to start me on azathioprine, as this was mentioned when I was in hospital but they changed their minds when my MRI was clear,  and then put me on pentasa in a follow up appointment as my fecal cal was 'very very ' high and my consultant was really concerned. I'm not sure if they will up or change my medication before I've had my scope, but I really hope they do something when I see my consultant Tuesday, I'm incredibly run down right now. 

As always, any advice, suggestions or experiences are more than welcome. Sick of being sick right now.


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## Cross-stitch gal

No advice or experiences.  Just wanted to let you know that my thoughts are with you and to send lots of hugs your way.  I hope they can get you figured out and that you'll start calming down at least somewhat soon. :hug:


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## DJW

I'm so sorry to hear the news. Is their a chance to reapply in a year?


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## valleysangel92

This year was my third attempt. I can reapply but honestly I can't afford to financially at least for a few years and it's just too much of a battle mentally, it's happened 3 years in a row and I really need a break from it. Plus as I said I have surgery in the next year or two etc so it's not really the best idea I don't think. I'm devastated but my health has to be my focus.


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## DJW

I understand. Your health comes first. Whatever you choose to do, know this (bases what I've seen of you on this forum) you have a lot to offer. Don't ever forget that.


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## valleysangel92

I'm not saying it'll never happen, just not for a while. I'm young so I have time on my side. Thankyou so much


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## CrohnsChicago

Hang in there valleysangel. And yes, sometimes plans need to be rearranged, but you shouldn't give up on them entirely. You've got the right attitude. :heart:

Here's hoping you have a more speedy recovery ahead! :hug:


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## gotumtum

Hey Valleys Angel - Is there any way you can study by distance learning? - I do and could not have studied the 'normal' way


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## valleysangel92

Thanks guys, the support means a lot 

Unfortunately I wanted to study nursing and there is no distance or part time option, the only other university course I would be interested in is teaching and again that's not available as a distance course, and also even less financially viable at the moment. (Nursing has no tuition fee in the UK as it's paid by the Nhs)


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## gotumtum

Bother and hugs!


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## valleysangel92

Gah. In so much pain tonight. Stomachs in knotts and I've had reflux almost non stop for the past few days,  omeprazole is only working for a few hours at a time. 

I still have no sign of my scope. Hoping my GI will be able to speed things up. 

I've also had more episodes of cramps. They cripple me and leave my entire body aching for days. Crohns is truly kicking my backside right now. 

Tuesday cannot come quick enough. I'm hoping they will have a plan and not want to wait for the scope.


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## UnXmas

I'm very sorry things aren't so good. I know what it's like to have to change your life plans because of health. You may find a degree you are interested in that is not physically demanding - I know it's not your priority right now, but there are many options out there, including areas that cover medicine and childcare from a more social science perspective. 

Make sure you get everything across to your consultant - do you have a good relationship with him/her?

I hope your appointment goes well. :hug:


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## valleysangel92

Thanks UnXmas, I know there are plenty of other degrees etc, to be honest though any degree with tuition fees is going to be a problem for a few years at least, and I know that whatever I end up doing I want to be hands on. 

I think I have a fairly good relationship with him, but its really early days, tomorrow is only the second time I've seen him as an out patient, but so far so good. He seems to make a lot more effort than my last one and he really listens to my concerns and point of view. He knows I've been struggling the past few weeks already as the nurse let him know, but I will make sure I let him know myself too. I have a list of questions for him at the ready and will be making a list of all the issues I've been having to make sure I don't forget anything.


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## Jay Woodman

Thinking of you & hoping you will be doing much better soon : )


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## valleysangel92

Well my appointment went pretty well. I'm starting azathioprine as of today. I'm starting at 50 mg and will be seen again next week to see how I'm doing. Going to be having weekly blood tests for a little while to monitor my liver and white blood cells etc. I'm staying on 20 mg of Pred until my next appointment at least, the plan being to up the azathioprine as we lower the Pred. My GI said he would ideally of preferred to have the colonoscopy first, but since there's no sign of it there's no sense in leaving me on steroids indefinitely. Hopefully this will get me on the way to feeling better.


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## Cross-stitch gal

Hopefully this will work out for you.  Glad to see you leaving the steroids though...


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## valleysangel92

Me too.. I can't wait to start tapering, hopefully next week! They've really helped me, but I look like a hamster and my skin and hair are awful, I have cracking skin from where it's so dry and if I brush my hair the wrong way my scalp bleeds, and I know it really can't be doing my bones any good.


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## Cross-stitch gal

Yeah, my original GI used to hand those things out like candy whenever I had a flare.  They really are awful.  My current GI doesn't want me anywhere close to them.  I'm glad to not be in need of them anymore.  I can totally understand what you're talking about...


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## StarGirrrrl

Sorry if I am stating the obvious, or missed something, but why isn't your GI chasing the scope? Or maybe you could call the endoscopy centre direct and see why the appointment hasn't been issued yet?


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## valleysangel92

This is just the way things are here. Other than bring me in as an emergency there isn't much my consultant can do to speed it up. Endoscopes /colonoscopies are done in hospitals not an outside center. Although I've heard that other people have waited less time, I also know that there are a lot of people who have waited longer. My boyfriend has symptoms of Gerd, and was told that in his area (different to mine)  people wait up to a year for routine appointments. My GI referred me as urgent, so I'll be on the quicker list.  I have a feeling that I may have been on the urgent list for my first one judging by how long it's been this time, and that was about a 2 - 3 month wait.

Due to red tape etc they have to keep a certain number of slots open per week in case of emergencies,  and that means that they can't give those appointments to others, which means waiting lists end up longer. It's irritating, but it's just the way it is. I've learnt to pick my battles when it comes to waiting times.


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## valleysangel92

Apologies if that was a load of waffle. Hardly slept last night and had to be up 6.30 am for the appointment. It's 9 pm here now. Plus fibro fog doesn't help.


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## StarGirrrrl

Oh okay thanks for explaining. Both hospitals I have scopes done at do them in house also but you can ring them like any other department, indeed I have done so in the past 

I saw my GI a few weeks ago, he ordered an urgent scope (within 6 weeks), couldn't book there and then since the staff member at scope unit was out. Phone call a few days later (I phoned in since they hadn't gotten back to me in the time frame I was given) got me an appointment 15 days after seeing GI. I could have had one 5 days earlier on the Bank Holiday but couldn't due to there being rail replacement buses. Will be hard enough getting 20 min train could not comprehend a 45 minute bus!

The other Hospital was much like the set-up you describe, you're told the current waiting time for your priority (I think it was 12 weeks then), eventually an appointment came through 6-8 weeks later for the 12 week mark. Again I could have phoned them direct but didn't bother.


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## valleysangel92

I didn't realise you were in the UK when I responded,  I can call my endoscopy department, but there isn't a great deal of point. I did it with the last one and just got told it depends on the number of emergencies they have etc (my hospital has 2 types of emergency, those that are inpatients and a 10 day referral system) . 

I've got another follow up on Wednesday,  might ask them about it and see where we are. I'm just glad I'm not having to wait for treatment. 

Wow,  couldn't imagine trying to get back from a scope on the train! My hospital won't discharge without someone to drive you home and stay with you.

Azathioprine wise I've been doing ok so far. Felt a bit sick the first few days and joints are very achey but that could be my fibromyalgia. Will see what happens when my dose is upped.


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## StarGirrrrl

I did have someone with me who I live with, just no one to drive me all the way, so did taxi's and train (not enough money for taxis all the way). If I had asked for Hospital transport i'd probably be waiting around for hours so I didn't bother. 

In the event I was fine, did end up needing lots of meds during the scope but I slept for an hour in the recovery ward without realising until later lol. Thought it was odd my Nurse asked again if I was okay when i'd only seen her minutes before, she'd actually been off on her lunch break for an hour!  :ybatty:

They did know how I would be getting home and didn't let me go until they were sure I was okay.

I also did Picolax with special diet instead of Klean Prep no diet this time which was so so so so much better. Hardly any nausea and cramping, and apart from a hairy two hours after my second dose ( 8am & 4pm) I was only going 1-3 times an hour. Running clear by 9pm and fast asleep by 10pm. Only a couple of bathroom visits in the morning before it all dried up.

Considering I am significantly anaemic right now, and had had to stop iron tablets 2 weeks before the scope I think I did really well overall.

I do hope you feel better soon and get the scope you need

:ghug:


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## valleysangel92

I understand that, would make things so much easier for me if my hospital wasn't so strict, but it has to be driving, or hospital transport which like you said takes hours. 

Haha bless you. I did that after my endoscopy for coeliac. 

Picolax is so much easier! Although I did still have to do the special diet when I used that. Unfortunately my new GI isn't keen on it and wants me to give moviprep a try -_-. If it doesn't agree with me then he's said I can go back to picolax in the future.


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## Muppetgirl

Just wanted to say that I had to drop out of a health related training for a while when I was dx. It was horrid at the time, but a couple of years later I got back in the saddle. I can totally relate to the tiredness and pain. You absolutely should do what you need to for your health. You can pick up the rest in time.

I hope your appointment tomorrow is useful. Let us know how you get on.


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## valleysangel92

Thanks muppetgirl. 


My appointment went well, aside from scaring the nurses with a heart rate of 143. Consultant didn't bat an eyelid though. Aza is now being upped to 100 mg daily. Steroids still staying the same for now. Being seen again next week. Hopefully be allowed to start tapering then, even my consultant says I look 'puffy ' (thanks) and they are effecting my mood. Can't wait to be off them.


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## Muppetgirl

Oh my, I'm surpised your heart didn't motor on out the consulting room!

It's good they're keeping a close eye on you. Hope you get to taper off soon.


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## valleysangel92

The look on the nurses face you'd swear my head was going to fall off haha. Its happened before though so it didn't really worry me, it's just something to keep an eye on. 

I'm very impressed with my new team still, definitely getting better care than I ever have before and they really have genuine interest in me.

Edit - I have just realised its been 10 weeks since I was referred for my 'urgent ' colonoscopy. No idea how long the usual wait is, I meant to ask yesterday and totally forgot (too busy convincing the nurses I wasn't going to collapse on them). StarGirrrrl, do you mind me asking what part of the UK you are in?


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## StarGirrrrl

Not at all I am in the east of England 

However although both Hospitals I attend are in that area they are two separate NHS trusts. Far better performance from the one I am currently attending!


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## valleysangel92

Ah okay!  thanks . I'm in South Wales, from what I can gather we have quite a difference in waiting times compared to much of England. 

I'll be seeing either my consultant or the nurse next week anyway and will ask them if they know how long the wait usually is.


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## valleysangel92

I saw my IBD nurse today. My bloods are still showing inflammation (first I'd heard of it), had more done today. Took 4 attempts to get enough blood. 

I can reduce my steroids to 15 mg from Friday and see how I go. Then will see the nurse again next Wednesday. 

She's also told me that if I need any letters or anything for my Esa /disability claim or for employers when I eventually get back to looking for work then she's more than happy to get that sorted out for me. 

If everything is ok next week I may be allowed to go a month between my appointments.


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## Cross-stitch gal

Sorry to hear about the blood.   That doesn't sound like a whole lot of fun having to take 4 attempts.  But, thankful to hear that things seem to be going well.  Hopefully they'll finally continue getting better for you.  Thanks for the update.  xxxx


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## DJW

Hang in there valleysangel92. Sometimes vary small steps are all we can hang on to. I hope you're able to go a month between visits. I had a whole month with no doctors visits. It was fantastic.


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## valleysangel92

Thanks both - 

Cross-stitch gal - unfortunately it's not a new thing for me  have had up to 8 attempts in the past, including feet. I have some stunning bruises now! Xxx

Djw - thanks,  wow that sounds like a dream  I can't remember the last time I went a whole month with out some kind of hospital or doctors appointment. Unfortunately I'll have to wait a while longer, even if my crohns visit goes to a month, I have to go to the hospital for my orthodontic braces (complex case, need surgery), and have to book my flu vaccine ASAP, and have coeliac clinic to attend next week (3 months late) . I can dream though.


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## DJW

O my gosh. You deserve a brake!


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## RickUK

valleysangel92 said:


> Ah okay!  thanks . I'm in South Wales, from what I can gather we have quite a difference in waiting times compared to much of England.
> 
> I'll be seeing either my consultant or the nurse next week anyway and will ask them if they know how long the wait usually is.


Hey I;m in South Wales too! Small world haha! Apologies for the slight off topic response lol


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## valleysangel92

Haha awesome,  valleys girl myself . How do you find your care?  


On another note, I started my prednisolone taper this morning,  and tonight the pain is worse than its been for a couple of weeks. Hopefully it's just a coincidence. Really not keen on being stuck on these things any longer than totally necessary!


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## RickUK

valleysangel92 said:


> Haha awesome,  valleys girl myself . How do you find your care?
> 
> 
> On another note, I started my prednisolone taper this morning,  and tonight the pain is worse than its been for a couple of weeks. Hopefully it's just a coincidence. Really not keen on being stuck on these things any longer than totally necessary!


I live in the valleys too! Awaiting an appointment in next few weeks at P.O.W. hospital as my calprotectin test came back at 752, 50 and under is normal so all the GI is confident of at the moment is that inflammation is present for sure


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## valleysangel92

Ah right I know it, I'm seen at the gwent and Ystrad Fawr. Hope your appointment doesn't take too long to come through. 

Do you mind me asking how long you normally wait for scopes?  I've been waiting since July for an 'urgent ' (I saw my GI tick it) scope and there's no sign, no one at the hospital seems surprised though.


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## RickUK

valleysangel92 said:


> Ah right I know it, I'm seen at the gwent and Ystrad Fawr. Hope your appointment doesn't take too long to come through.
> 
> Do you mind me asking how long you normally wait for scopes?  I've been waiting since July for an 'urgent ' (I saw my GI tick it) scope and there's no sign, no one at the hospital seems surprised though.


My sigmoidoscopy ... I was referred in March waited about a week or 2 for "prioritising" by the GI who then marked it urgent. Was seen August 18th.  This next camera and MRI is quicker as a GI himself has actually referred me, as oppose to a Dr.  So im actually looking at 6 weeks maximum this time. Got to ring tomorrow infact to discuss best date and time with their booking team and do some questionnaire????

Hope yours is soon


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## valleysangel92

My GI referred me directly this time,  so goodness knows how long people who are referred by GPs are having to wait. Thanks


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## RickUK

valleysangel92 said:


> My GI referred me directly this time,  so goodness knows how long people who are referred by GPs are having to wait. Thanks


Exactly. Being referred by a GP I waited roughly... 24weeks or so.  This time is 6 via the GI. Suppose they got the authority to push it through quicker


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## valleysangel92

Woke up with horrendous pain today,  stomach spasms that had me doubled over. I was so rough that mum stayed home from work to take care of me. 


I called my IBD nurse, she thinks it's the Aza. She's told me to see how I feel later, if I feel ok then I can take one, if not then wait till tomorrow. Either way I have to go down to one tablet (half my dose) and stay there until I see her Wednesday. 

Hoping this is just a coincidence and I won't have to come off Aza completely.


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## RickUK

valleysangel92 said:


> Woke up with horrendous pain today,  stomach spasms that had me doubled over. I was so rough that mum stayed home from work to take care of me.
> 
> 
> I called my IBD nurse, she thinks it's the Aza. She's told me to see how I feel later, if I feel ok then I can take one, if not then wait till tomorrow. Either way I have to go down to one tablet (half my dose) and stay there until I see her Wednesday.
> 
> Hoping this is just a coincidence and I won't have to come off Aza completely.


Sorry to hear that hope you feel better soon! I have got my date for colonscopy now it's 20th October so I hope yours is soon too


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## valleysangel92

Feeling pretty low today. I was supposed to start my degree this week. Inbox is full of emails about freshers and registration and uniform fittings. Its really hitting hard that I can't go and that it will be a really long time before I can think about going back
. 

As well as this,  I'm physically pretty poorly still,  I keep taking one step forward and two steps back and it's really frustrating. I'm really lost in regard to what to do next,  I'm having a hard time separating Aza side effects from fibromyalgia symptoms. 

I'm pretty much dealing with a lot of things by myself. My parents are great but they work full time and I go to my appointments on my own,  and I don't always know how to talk to them,  they have a lot of pressure on them as it is. My boyfriend tries to support me but he's very forgetful and I have to re-explain things a lot and has been really busy lately and gets distracted a lot. Sometimes he tells me he doesn't know if he can give me the support I need, so I often hold back from talking to him about how bad things really are emotionally. I feel like I'm constantly trying to keep everyone else happy and ok. I know I can talk to them,  but I also know they have a lot on and can't always be there. I do my best to keep going and be  strong like everyone expects but underneath it feels like everything is falling down around me. 

Sorry I don't really know where this is going, just had go get it out somewhere.


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## DJW

Sorry valleysangel. I can imagine it would be tough seeing those emails. It can be very tough trying to protect those around you from the full measure of what you're going through. 

Are you in hospital?

Sending you my continued support.


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## valleysangel92

Yeah you hit the nail on the head there. 

I'm not in hospital at the moment,  almost had to go to A+E yesterday, pain was worse than anything I've had before and was really struggling to eat or drink because it made the pain worse each time I sipped even water. Thankfully managed it at home with pain relief advice from my nurse. She thinks it was an Aza side effect... So I skipped yesterday's dose and took half dose today as per her instructions. My mum stayed home with me and said she could see my whole body shake with each spasm and my stomach was really swollen. I have an appointment with my nurse tomorrow. Hopefully we will work things out.


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## UnXmas

I'm sorry. I feel similar about my parents as you do with your boyfriend I think. My parents are retired, so they have the time to spend with me, and come with me to appointments, but they find it too hard to give much emotional support. It scares them to see me so ill when they know they can't do anything. I also feel like there's only so many crises I can have - it gets too much for them to deal with crisis after crisis. What does help them is knowing I'm getting a lot of help from professionals. It's a relief for them when I'm in hospital, and I think it helps when they come to see doctors with me. For example, today the doctors have been talking about discharging me from hospital, and the gastro in charge asked if he could call my mum - he reassured her that it's safe for me to come home, and that I'll be having nurses visit me at home daily at first.

Maybe your boyfriend would also find it easier if he spoke with your doctors? And if your parents can't come with you to appointments, could your doctors call them? I think it takes some of the emotional burden off the people who care about you if they know there are others in control of your medical care, who know what they are doing. 

Writing letters (or sending texts or emails) to your boyfriend and parents may also be something to try; it could help your boyfriend remember things, and you might find it easier to express yourself to your parents that way.

I don't know if it's something you'd consider or not, but maybe a counsellor would be able to help you with the emotional side. I'm sure dealing with such a tough chronic illness would be more than enough reason - you might even be able to get to see someone on the NHS. Personally I've never found that type of thing useful, but I know a lot of people do. It would at least mean you had someone to talk to who you didn't feel you have to worry about upsetting.


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## nogutsnoglory

I'm sorry you aren't able to live the life you want at the moment but just know that this doesn't mean that next month or next year it won't be totally different. Yeah, this is going to be a chip on your shoulder for life but hopefully you will be able to manage it and mostly live out your dreams.


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## valleysangel92

UnXmas 

Thankyou for responding, I know you're having a tough ride right now. What your talking about does sound similar, it's like there's only so much weight I can put on other people and there's only so much they can take. In some ways I feel like it's easier for me because in a way I have to face up to it and deal with it or it will control me, I'm fighting it by taking my meds and conversing with my doctors and stuff like that,  but there's nothing they can really do about it, I don't know if that makes sense? 

My boyfriend has been to a couple of appointments with me but none of them were really crohns related. It's hard because he lives 50 miles away and he can't drive. It might be a possibility soon though as he's just finished university so there might be an opportunity before he gets into a job. I think the most difficult thing is he doesn't know what to say to me,  he knows he can't fix things and I know he finds that hard.
My parents have sometimes seen my doctors when I've been an inpatient, and they've seen how good some of them are. They understand fairly well and when they can be there they really do support me. I think as well when you say about trusting the people caring for me, that it's an issue for us at times. I've been treated really badly by some doctors and I think at times it makes it harder for the people around me to trust that I really am being looked after. 

I've had some counselling in the past ( abusive relationship)  and to be honest I didnt get much out of it. I like the letters idea though. That's something I'd try.


I think at the moment it's just a case of everything at once type thing, and the steroids are definitely affecting my mood.


Ngng - Thankyou,  I am trying to remember that. I think it's just seeing all the reminders and all my friends graduating is having an effect, but I know it will get better, thankyou.


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## valleysangel92

Well, I'm coming off azathioprine. We're having a 2 week break and then we'll talk about trying mercatopurine. In the mean time my steroids are going to back up to 20mg ( yay) and I'm doubling my pentasa to try and give me some sort of protection from a relapse. 

Most of my bloods are ok, phosphate is very slightly low but that's nothing a few glasses of milk won't fix. Inflammation markers are slightly up but not enough to be a huge concern.


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## RickUK

valleysangel92 said:


> Well, I'm coming off azathioprine. We're having a 2 week break and then we'll talk about trying mercatopurine. In the mean time my steroids are going to back up to 20mg ( yay) and I'm doubling my pentasa to try and give me some sort of protection from a relapse.
> 
> Most of my bloods are ok, phosphate is very slightly low but that's nothing a few glasses of milk won't fix. Inflammation markers are slightly up but not enough to be a huge concern.


By inflammation markers do you mean CRP?


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## valleysangel92

No my CRP was alright I think,  the one that was high was neutrophils (not sure of spelling) . She said it's common for them to be raised when someone has chronic inflammation or is generally poorly.


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## valleysangel92

Oh and I asked my nurse about the waiting list for the colonoscopy. She says it depends which hospital I've been added to the list for. 

Apparently, the hospital that I attend for clinics has around a 3 month list, this is the hospital I would actually prefer to go to as I would actually get to have the procedure done by my consultant. My nurse told me today that he is actually the center of excellence lead for the area with bowel screening Wales which means his procedures are excellent. Even without knowing that though I still would have said the same, my consultant makes me feel so much better about things and I know he'd really look after me. Plus that hospital is much easier to get to by car, just 10-15 mins and parking is free and easy. 

If I'm on the waiting list for the other hospital where I have to go when I'm an inpatient and for my scans and coeliac check ups then it's a case of sit tight and wait, apparently they are having a bad time clearing their lists,  so 3 months would be lucky there.


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## UnXmas

You mean there are actually NHS hospitals with free parking?!

Finding the right surgeon is so important - definitely worth waiting for.


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## valleysangel92

All hospitals in Wales have free parking except the university hospital in Cardiff because they couldn't get out of their contract, the company that runs it won't let them. I couldn't believe the prices in England when I was there briefly for uni. It's insane! 

I'm hoping it'll be the gi I've been seeing in clinic recently,  but it could be any GI really.


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## valleysangel92

Finally a little good news. My coeliac consultant is happy with me and is confident in the plan me and my new consultant / nurse have set up so he is going to ask that my care be dealt with solely by them - I don't need to see him any more. My coeliac is well controlled and my IBD team is more than able to look after it. He's given me a form to get some bloods done but says they can just be done when I next have crohns bloods as I only had a blood draw 2 days ago and he thinks I deserve a break. So,  my care is being condensed and no more going between consultants like it's pass the parcel, which will make things so much easier in terms of who to contact when I have issues and when I get admitted for anything. Also means my appointments are all going to be at the nicer hospital, which is closer to my home, although 2 bus rides it involves less walking and is more comfortable. I was only seeing my coeliac consultant once a year anyway, but having 2 consultants causes chaos when you're admitted, they never know which one to call and my GP would always get horribly confused.  

I'm very happy with my current IBD team and have no concerns at all about being left fully in their care. They are worth their weight in gold to me for the care they have given me since June. 
It's a small victory, but it's still a win. Yay.


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## valleysangel92

Well tomorrow I go back to see my nurse and I'll have to tell them my decision regarding 6mp. 

I think I'm going to be giving it a go, I'm not really sure what my other options would be but I think the most likely would be methotrexate and I think I prefer 6mp to that. 

At the moment I'm quite frustrated. I know there are plenty of people who have been ok on 6mp after having problems with Aza, but I also know it's going to be a waiting game to find out if that's the case for me or if it even controls my crohns. I know this is something we all have to deal with and I know that compared to some I have nothing to complain about but the constant waiting and holds up is dragging me down. My life has been on constant hold since I left college (sort of like high school), that was three years ago and I've literally got nowhere since. 

I think there's also the aspect of a domino effect. I started getting sick at 12 and haven't had a single day where I can remember being totally pain free / well since and all that time there have been constant decisions for me to make. 

My family are lovely and my boyfriend really tries to support me, but a lot of the time they don't understand what's going on, they aren't medically minded and struggle to remember facts about the medications etc. It's hard to try and have someone help with a decision when you have to re-explain everything every time you want to talk about it. I guess because I've always been responsible for my health and appointments,and because the descions regarding my crohns surgery and other surgery I need have been down to me, it's easy for the people around to forget that at the end of the day, I am still only 21 and these are massive choices. A lot of the time it's down to me to have the answers and know what's happening. When anyone else is unsure they ask me, so I don't really have anywhere to go when I'm not sure, I'm too busy trying to reassure everyone else. That's why this place is such a blessing. 

I know I will get through this. I know this isn't forever and eventually things will get back on track and I'll be able to work or study. I know there will be a time where I get a break from always having to make these huge choices, but that time feels a long way off, especially due to the other surgery and conditions I have. 

I know that there are many going through the same and far worse but I had to get this out. Thanks anyone that reads and /or responds. 


Right. Rant over. Socks being pulled up.


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## nogutsnoglory

It's not a fun game or path to be on valley and I truly hope that it will an amazing change for you so you can get on with your life. You have a strong positive attitude which is fantastic and at the end of the day all we can really do is take the hits and march forward.


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## Muppetgirl

I'm sorry it's all mounting up at the moment. I can relate to those moments when you just want a break. I'm there myself right now. From reading your posts I think you have a lot going for you. You are always thoughtful and you are there for others. You will find an opportunity to offer what you have. 

I know what you mean about having to reexplain, even to those who care a lot about you and try to understand. In some ways you can be more taken aback by those people forgetting/not understanding. Personally I think its because it can make us feel incredibly alone with it. This disease malarky can feel very isolating. But you know, you are not alone, there will always be someone who gets it and plenty who care.

With your treatment you can only ever make the best decision for you at the time. I once read a quote 'all important decisions must be made on the basis of insufficient data', so true! You are doing the best you can and that is good enough. I hope things go well tomorrow and good luck with the treatment.


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## DJW

Sending you my support.


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## valleysangel92

Nogutsnoglory,  thankyou for your support and your kind comments. I needed that. 

Muppet girl - again, thankyou for your kind comments and support. I'm very grateful to have this place where I can let my feelings out and share my fears with others who know how it feels and who understand what I'm dealing with. 

Djw - Thankyou for your continuing support. 


Today went well. We are starting 6mp  very slowly. I'm going to work towards a dose of 75 mg, starting at 25 mg for one month and going from there. If I experience any pain like what I had before I have to stop the 6 mp instantly. I'll be reviewed in 2 weeks, since my liver and kidneys were ok on the Aza, my nurse feels she can allow me a bit more of a break between visits so fortnightly is ok. 

I have some buscopan to help me with the spasms I get. 

My nurse is going to write me a letter to support my claim for Esa. This will be sent in place of a sick note from a doctor. Hopefully it will be accepted and will mean I won't have to contact my GP every month to try and get a new note which will be far less stressful as it's a different GP every time and some of them make me feel horrid for asking. I can tell they think I'm lazy and milking my diagnosis. Thankfully not all my doctors at my GPs are like that, but you never know who you'll get until your there. My consultant and IBD nurse are amazingly supportive and sympathetic though,  which is very refreshing. 
So, I shouldn't have to worry about looking for work for a little while. Although I really wish I could work, being in the house is driving me nuts, I'm grateful to be in a position where that pressure is gone for now. As much as I hate it, I know I am not in a place where working is an option right now, and being forced to do so would significantly damage my health, so it's great to have such an empathetic team who know how debilitating this condition is and will do anything they can to help.


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## valleysangel92

So I had another follow up today. We have a change of plan.. Because I don't seem to be getting any side effects but I'm still getting quite a lot of pain we are going to try upping the 6 mp now instead of waiting. So I'm going up to 50 mg. I'm still tapering my steroids and keeping up with the pentasa. 

My ferritin is low ( normal range is 10-30 mine is 7) so we're retesting that and I need to eat more fish and eggs,  my haemoglobin is ok at the moment so we're going to see how my iron looks in the new tests and then see where we go from there. I have tried many forms of oral iron and have never been able to tolerate them, they send my stomach crazy, so it might be injections /an infusion. 

I'm going to see her again in 3 weeks this time due to being away.


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## Catherine

Here hoping the increase dose of 6mp work for you.


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## valleysangel92

Thankyou. 

Today I finally got a letter to say I could schedule my scope. I called and it's booked for the 10 th November. Just have to wait for the confirmation and the prep to come through the post. 

The good thing is that it appears it will be done at the local hospital, which I think means I will get my GI doing it not some random doctor like last time, which is reassuring as I've been told that my new GI is actually a clinical excellence guide and does the cancer screening Wales stuff. So in good hands, which allows me to hope that this one won't be as painful as the last.


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## StarGirrrrl

Glad you finally got some news about your scope


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## Muppetgirl

Yay that you finally have a date! Fingers crossed it will be kinder than your last one...sounds like with this new GI there's a good chance it will be. Lets us know how you get on.


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## valleysangel92

Thanks both!  

Muppet girl I sure hope so!  My first one was horrible, very painful and can remember the whole thing ( although that's pretty common in the UK anyway). But have heard really good things about where I'm getting it this time, and I know if i get my GI hes already said I can ask for more pain relief. Plus this time I hopefully won't have so much narrowing and I'll have less bowel that will make things easier.


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## Muppetgirl

Ugh it really is awful when they go badly. I think them being sensible and responsive to your pain etc are two of the most important things and its sounds like you'd get that with him, and he knows your history properly, which is much better than a stranger scanning your notes 5 mins before you get to theatre! Could you find out beforehand if it will be him?


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## valleysangel92

In fairness, the doctors that did my first scope were good but I was full of ulcers and I had an impassable stricture, I didn't realize at the time I could ask for more pain relief and tried to just stick with it (I was 19). At least they got that it was impassable and didn't try to force it (another doctor offered to try, the one doing the scope said no way). Unfortunately they always say they can't guarantee what doctor you will get, I'm assuming that my doc isn't the only one that does scopes at this hospital, so there is still a chance of there being someone else. The hospital itself is a clinical excellence center for scopes anyway, so that's reassuring too.


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## fozheart

I am sorry that I have missed seeing your thread the last few weeks- you go through more than anyone I know, in such a short time!  You sure do have a lot to keep straight, and I do wish that you had someone right there that you could fall back on, for the type or support that you are not getting, and to help with some of the decisions you have to make.  (even though you do have a great family.)  Yay for the scope finally being scheduled!  I wonder why they do not make you as comfortable for it, as they do here....I guess the less drugs, the better? 

Is the pain that you have been having so badly, the ripping pain that you had mentioned a while ago any better?   I am hoping that it has lessened a bit, being off the Aza.   

You do carry so much- and I do pray that you can get some answers and relief soon.  University will happen some day, and when it does, you are going to make your mark and fly high!  

Hang in there.


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## valleysangel92

You've had plenty to deal with yourself, please don't feel bad!  You've always been a great support to me. I wish that too sometimes, I'm very grateful for what I do have but sometimes more understanding would be great, on the other hand to understand they would probably need to go through what they do, so from that perspe I'm really glad they don't.   I think it's a mixture of things, they like you to be able to respond to commands such a as rolling over during the scope, the lower risk of lighter sedation, quicker recovery time (no clogging up precious beds) , less chance of needing to be admitted after the scope. Although my letter and information booklet came through today and I'm sure that some of the information is different. It is a different hospital so it might be a different policy. I'm pretty sure my last one said you would get 'concious sedation ' this one says 'cooperative sedation' it also says that the sedation means it is very unlikely you will remember any of the procedure, where as the last one only said you might not remember it. So it sounds like this hospital might give slightly more?  I'm also wondering if I have more of a tolerance to the sedative because of the fibromyalgia, which wasn't diagnosed when I had my last one, as I have heard of it contributing to altered effects of sedatives and some analgesics. The letter that came with the booklet /prep also states my GIs name, which is something that didn't happen last time. The consent form still says they can't garuntee a specific person but generally if you get a letter with a specific consultants name then you get that consultant. 


Yes that pain is thankfully gone, I haven't had a repeat of it and hopefully won't again!  I still have my more usual crohns pain, but even that has eased a little, just need to keep making it improve and get a handle on my joints. 

Thankyou so much, I know that when that time comes I will appreciate it so much more and I will definitely get the best out of it that I can.


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## Stoner

I can't believe what you people go through in the UK to get a colonoscopy. Here in the US they schedule as you leave the doctor and usually have an appointment the following week. Things are changing in leaps and bounds with our current President. May be in your position before long. Two things came to mind when I read your post Valley. First off, there is a correllation with your flare-ups and trying to get accepted into the University. It's called stress. My son went into a major flare-up the first part of the year due to finishing up his masters, third baby on the way, building bedrooms to house the first two kids, and shopping for a bigger car to transport three kids. Oh and his wife was finishing up her masters at the same time. STRESS!
Second thing, are you sure you want to go into nursing or child care with an auto-immune disease? You'll be facing lots of germs in both cases. I go weeks without seeing my grandkids because they are always sick with something and I wear a mask to the hospital if I have to go in for testing during flu season. Call me a germaphobe, but it comes with the territory.


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## valleysangel92

Hi there 

Yes trying to get in for a scope is a bit of a nightmare!  I was on the urgent list in the faster hospital so I dread to think how long others are being made to wait. I have heard stories of people in some parts of the UK being made to wait up to 20 months. 

I can see what your saying, but my symptoms were already active when I first went to university and had been a long time. The stress of moving to a new place and starting a hectic course probably made things worse and then I had to leave because I was just too sick. The year after, I didn't have to reapply Because I'd left on medical grounds, my crohns had been treated with surgery but they felt I wasn't recovered enough from the surgery. The university again granted me a place without application for this year and until I began to flare again I honestly thought I would get it as I was getting my other issues controlled and felt generally good. Unfortunately, I wasn't on maintenance medication for the crohns and I wasn't really getting the monitoring I needed. While the stress of looking for a place to live probably had some contribution to my flare, I was generally quite stress free and think that if my crohns had been better monitored or I'd been on a maintenance medication then the flare would of been far less aggressive. 

I am definitely sure that I want to work with children either as a nurse or in a care/education role. It's what I've always wanted to do and I honestly can't see myself being as happy in any other job. To be honest, even working in education instead is a compromise, but one I'd be comfortable with. I already spend a lot of time around children, my sisters both have children and I don't really puck much up off them. My mum works as a teaching assistant with 3-6 year olds and carries lots of bugs home from them and again I don't pick anything up. I completed placements in a nursing home and schools and although I wasn't diagnosed with crohns I had symptoms and I already had coeliac diagnosed which is also autoimmune. I have discussed with my nurse at length if working with children is a viable option while taking immunosuppressants and she has told me it's ok provided I make sure I get my flu jab ( I do anyway, I'm asthmatic)  and take extra care with chicken pox. Nursing is something I would have to talk to them about again when my health is stable and then they can advise. I do know there are people who work in health care while on immunosuppressants and as long as they are sensible it's not always an issue. I am very aware that my health has to come first and am willing to compromise to make sure it's protected but I don't think I need to go as far as writing off work with children completely, I mean we risk getting sick every time we leave the house, and I'm dependant on buses at the moment, so I'm travelling on germ factories all the time and so far my immune system seems to be holding its own ok. 

Thankyou for your response


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## valleysangel92

Hi there 

Yes trying to get in for a scope is a bit of a nightmare!  I was on the urgent list in the faster hospital so I dread to think how long others are being made to wait. I have heard stories of people in some parts of the UK being made to wait up to 20 months. 

I can see what your saying, but my symptoms were already active when I first went to university and had been a long time. The stress of moving to a new place and starting a hectic course probably made things worse and then I had to leave because I was just too sick. The year after, I didn't have to reapply Because I'd left on medical grounds, my crohns had been treated with surgery but they felt I wasn't recovered enough from the surgery. The university again granted me a place without application for this year and until I began to flare again I honestly thought I would get it as I was getting my other issues controlled and felt generally good. Unfortunately, I wasn't on maintenance medication for the crohns and I wasn't really getting the monitoring I needed. While the stress of looking for a place to live probably had some contribution to my flare, I was generally quite stress free and think that if my crohns had been better monitored or I'd been on a maintenance medication then the flare would of been far less aggressive. 

I am definitely sure that I want to work with children either as a nurse or in a care/education role. It's what I've always wanted to do and I honestly can't see myself being as happy in any other job. To be honest, even working in education instead is a compromise, but one I'd be comfortable with. I already spend a lot of time around children, my sisters both have children and I don't really puck much up off them. My mum works as a teaching assistant with 3-6 year olds and carries lots of bugs home from them and again I don't pick anything up. I completed placements in a nursing home and schools and although I wasn't diagnosed with crohns I had symptoms and I already had coeliac diagnosed which is also autoimmune. I have discussed with my nurse at length if working with children is a viable option while taking immunosuppressants and she has told me it's ok provided I make sure I get my flu jab ( I do anyway, I'm asthmatic)  and take extra care with chicken pox. Nursing is something I would have to talk to them about again when my health is stable and then they can advise. I do know there are people who work in health care while on immunosuppressants and as long as they are sensible it's not always an issue. I am very aware that my health has to come first and am willing to compromise to make sure it's protected but I don't think I need to go as far as writing off work with children completely, I mean we risk getting sick every time we leave the house, and I'm dependant on buses at the moment, so I'm travelling on germ factories all the time and so far my immune system seems to be holding its own ok. 

Thankyou for your response


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## StarGirrrrl

I got my urgent scope (undiagnosed but urgent due to a previous hospitalisation for severe life threatening anaemia cause unknown) in 15 days, could have had one in 11 if i'd been able to make the appointment. Should have been able to book when I left the Dr but staff were out on lunch.

I live in England  So it can happen in the UK like it does in the US. There are individual NHS trusts in the UK and valleysangel is in Wales which is different again. It varies everywhere. Some are better (like mine) and some worse like VA's.


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## UnXmas

It's certainly possible to get short waiting times for tests on the NHS - I've found there to be huge variation. Valleysangel - have you thought about asking for an in-patient admission for testing? I realise going into hospital is the last thing you probably want to do, but when I've been in-patient, I've had tests booked and done within a couple of days, even when there was no urgency at all. I was in-patient to gain weight for several weeks this past summer, and while there had an endoscopy and MRI, with no waiting at all, and no urgent need to get the tests done whatsoever. Things just seem to happen immediately when you're in-patient.

Regarding working when you have a chronic illness, perhaps my advice is completely wrong, but I see no reason why you shouldn't work with children. Plenty of parents have Crohn's, and even if they are not working with children themselves, they will be taking their own children to school, to other kids' houses, to doctor's appointments - i.e. they'll be mixing with many children. Obviously you don't take unnecessary risks, you minimise the amount you mix with others when you have a particular illness that can be spread, but that applies to everyone, Crohn's or not. Nursing I'd imagine would be more risky, not just for the potential to get sick from others, but from the physical demands of the work. But you'll know what you're capable of.


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## valleysangel92

Thanks Stargirrrrl

Hi UnXmas. I have thought about that, there's been a few time's I've even considered just going to A&E because I know they'd admit me, but unfortunately being admitted like that means I'd get whatever gastro team happens to be on call, so it might not be mine, and I'd not get my GI doing the tests since he does his testing at the local hospital, which doesn't do acute admissions, and the A&E there can't handle anything more than cuts and bruises. Even if I got admitted through my GI I'd have to go to the other hospital, which is apparently having a bed crisis ( My uncle is a senior OT and leads a team, he has meetings with the CEO all the time and he's told me to avoid that hospital for as long as I can) so the chance of them agreeing to admit me is really slim.  Even when I was an in patient in June they said it was unlikely they'd do a scope while I was in.  It took a week to just get MRI results, which was a one line report. 

Thanks, I would of course always make sure I took sensible precautions, and most schools and nurseries have rules about accepting children with any sort of virus to minimize spread. Nursing wise I will revisit when I am stronger, from a Crohn's point of view I know of a number of people who work as a nurse with crohn's, I have thought about things like being a school nurse, so I'd have less hours and a slightly less physically demanding role, being part time or working for an agency where I'd be able to decline shifts if I didn't feel well enough. I have more concerns about the physical demands with the fibromyalgia/ crohns related joint pains, I feel these have the potential to cause difficulty with the physicality of the job, but I'm in early days with this and I know that I will have more control over it than I do now, so when that happens I will be better placed to make that choice. Thankyou for your support .


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## Muppetgirl

I have a friend working in healthcare who has crohns and who is on immunosupressants. I'm sure there are others in her position. At present this has not caused her specific issues. Like you say there are plenty of adjustments you can make within the particular post you have without adjusting the overall dream. Personally I think your experience on the 'other side' of the healthcare system means you have something that cannot be taught and is very valuable. If it's what you decide to do when the time is right, then I wish you the very best with it.


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## Muppetgirl

How'd it go with the endocrinologist?


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## my little penguin

Sending hugs
As far as childcare field and immunosuppressants 
My kiddo wasn't teaching but was on imunnosuppresants by at age 7 and biologics by age 8.
Plenty of exposure to elementary school germs the last three years .
The number of days he missed school for a cold cough etc...
Was by far less than my other kiddo


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## fozheart

Hi!  I am also waiting to hear how it went with the endrocrinologist! I forgot what this doctor does, specifically.  How do YOU keep track of everything with all of you your specialsists?  Sending good thoughts and hugs.!


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## valleysangel92

Thanks for the support regarding childcare work everyone, really means a lot to have so much support  

Regarding the endocrinologist it was awful. The consultant was talking to me as if I was a five year old with hearing loss. He came across as very confrontational and as soon as I was in the room he started questioning me on why I wasnt taking alendronic acid, which apparently I should of been,  even though at my last endocrinology appointment (with HIS registra) I was told not to start taking it because they wanted to see what rheumatology found first (fibro). I told him id been advised not to take it and he still told me off. Then he started saying that the alendronic would lower my calcium, which he later changed to saying that it was nothing to do with calcium (I already knew it wasn't)  and it's actually supposed to protect my bones. 

He then didn't even give me a script for the meds saying he didn't know if it was ok for me to have them because of the crohns meds I take (which I told him about at the start of the consultation) so he wants to talk to my IBD team first, and then apparently he will ask my GP to prescribe the alendronic if it's ok. Is it me, or would it of been simpler to give me the script and then have me ask my nurse when I see her next week, so that if it was ok I'd be able to get it and start taking it? Part of the reason he was so adamant I should be taking these meds is that I'm on steroids, which I lower to 5 mg tomorrow.. By the time my IBD team get his letter, then write back to him and he reads it, then writes to my GP and they read it and send me an appointment and give me the script, I'll be off the steroids anyway. 

Fozheart - they are supposed to take care of things like hormone and enzyme release and keeping the body's internal state constant. They look after things like diabetes etc. In my case, I was referred to them because I have to much calcium in my blood and osteopenia. But the consultant I saw wasn't interested in my calcium.as he says it's harmless ( runs in my family)  and wasn't that interested in the osteopenia either. Infact, he's discharged me from his care. So essentially, he's put me on medication and then left me to deal with it myself. 

His bedside manner was awful too. He spent most of the consultant with his voice raised and his eyes on the floor.

As far as keeping track of everyone, I have note books that I write my questions in then I fill in the answers, I keep it all together with any letters and reports from scopes etc so I have easy access to everything and then if I have an appointment with someone I've not seen for a while I'll read over what I've got from before, it seems to work so far.


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## Muppetgirl

Oh no! Just as things go well with one department... :ywow:

I'm sorry he didn't treat you well. It doesn't take much to be kind and to listen. I agree it would have been simpler & quicker to give you the script. :yrolleyes: 

Alendronic has some pretty unusual side effects, which as I understand are not common but are quite off putting. I was supposed to be on it for osteopenia/osteoporosis, however it just sat in my draw because I was too scared of it! I was prescribed calcium (which I'm guessing would make no sense in your case?) but even a single half dose sent me into awful D and I have enough of that already, so the thought of possible stomach issues with alendronic just wasn't okay with me. I may have to go back to it at some point though. I'd be interested if it can be okay for people with inflammation of the bowel. How do you feel about trying it? Is your osteopenia otherwise untreated? I agree somebody should monitor your treatment with it. I think it may even be a stipulation, I'd have to check. Maybe you rhematologist would be willing to? I'm under rheumatology for mine.


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## valleysangel92

It seems to me that far too many of those in the medical professions are not blessed with the gift of common sense. 


I'm not allowed to take calcium supplements, if I was then things would be much simpler. Unfortunately it's too risky as my calcium frequently sits at 2.8-2.9 and here they class 3.0+ as an emergency. 

To be honest I don't feel I know enough about it to give a proper opinion. I have seen one of the medication leaflets for it but that was about 2 years ago. The endo I saw made no attempt to explain the medication or the risks and side effects or to even instruct me on the best way to take it ( if I remember correctly it has to be used in quite a specific way?) . I will be seeing my IBD nurse on Wednesday so I will be asking her for her opinion and going off that, I have much greater trust in her than the endo.

I don't actually have a rheumatologist now. I was under one very briefly to check out my joint symptoms then when I was diagnosed with fibromyalgia my care went back to my GP.. I would need a new referral to rheumatology before I could see one, but I wouldn't get one as I have no new symptoms etc and they don't really use rheumatologists for fibro in my area ( the UK is broken up into different health trusts, each one allocates it's own resources) .


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## Muppetgirl

He does sound a bit all over the place. I hope the discussion with your nurse is more productive. Yeah according to the instructions it has to be taken on an empty stomach (empty of fluids as well as food) and then you must stay upright for at least half and hour and not lie down at all until you've eaten. There is a caution to take 'special care' if you have digestive problems, and digestive problems are a common side effect. The jaw stuff is rare but I seem to recall you were/are having some dental surgery? You have to tell your dentist if you are on it and some dentists will not treat those who are. I know different areas are different but for what its worth, I am under rheumatology for the bone loss alone (though I am reviewed infrequently). I think its partly because of being on the young side for it. I hope you find something that works for it.


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## UnXmas

I've had osteoporosis for a long time, but doctors have always told me that I can't take alendronic due to its effects on the digestive system. I think this was because I have reflux and heartburn rather than Crohn's or any problems lower in the digestive tract.


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## Muppetgirl

It's interesting you were told to avoid it Unxmas. It was partly the upper digestive side that put me off. I wasn't convinced it'd clear my stomach and not come back up either. The leaflet lists common side effects as 'stomach pain, constipation, D, flatulence, esophageal ulcer, acid regugitation, swollen abdomen, swallowing difficulties and digestive problems'- whatever that's supposed to mean, so I guess it can cause problems just about anywhere in the digestive tract.


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## valleysangel92

Hm I'm liking the sound of this less and less. Usually I would ask my doctors lots of questions and make sure I know everything I can about a medication before I go anywhere near it. 

I'm having reconstructive jaw surgery. I currently have braces to get my teeth in the right places and then when they are aligned enough I will have surgery where they will break my jaws, move them and then fix them with plates and screws. I have been waiting for this treatment since I was 17, there is no way I am doing anything to jeopardise it now! So I think I will be holding off until I see my orthodontist in December (if gastro approves it). 


The gastro side effects concern me. This may of been why I wasnt keen on it before (I knew I didn't like something about the med, couldn't remember what). 

I do have issues with heartburn and reflux, I take omeprazole daily for it. And sometimes I have issues swallowing where stuff gets stuck in my throat and I can't get it down.. 

I told the endo I was on omeprazole and on metaclopramide (an anti sickness)  and all he did was look blank. I really don't think he'd even looked at my notes. 

I'm going to make a note of all these things to ask my nurse about. 

Thankyou both!


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## DustyKat

There is a 6 monthly SC injection available called Prolia that is largely replacing alendronic in Australia, for the very reasons you are speaking of, the undesirable side effects and precautions that alendronic has.

I don’t know what the restrictions would be in the UK, as in age etc (I imagine it is targeted at the post menopausal demographic) but it would be worth asking about if you have a diagnosis of Osteoporosis. 

Dusty. xxx


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## Muppetgirl

It is sounding like this might be a non starter for you. Although it is a rare effect, the issue with the jaw is essentially the bone dying (osteonecrosis). With your description of the surgery and that it deals with the jaw itself, it would be surprising if this was going to be ok. The way I understand it dental surgery increases the risk. It's awful that he has not considered all your health issues, he should have discussed the risks with you. I know all drugs have a long list of potential effects but the digestive ones are commonplace, and there are serious digestive effects listed under uncommon as well. I'm sorry it has been such a rubbish experience for you. I do hope you find an alternative treatment though. Perhaps the one Dusty has suggested. I think I will look into that too...


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## valleysangel92

I think I might of heard something about those injections Dusty, I'll have to look them up and see what I can find out. They indicate that the alendronic is supposed to be for those who are post menopausal as well I think, so I might have a chance at still getting the injections if they are available here. I'd just have to work out who to ask, since the only people taking interest in me are gastro at the moment. Thanks Dusty! 

Muppetgirl - I'm thinking the same, I know that all of the medications we use have risks and that every medication has the potential for side effects and causing damage to the body, however the risks are usually proportional to the condition that they are treating. At the moment I have osteopenia, not osteoporosis, and while I know that prevention is best, I don't feel like this medication is proportional to the risks of not taking it. There are surely other options available, there must be something that they use for the people who cant use this medication, I've heard of injections and infusions being given to those with ostoporosis, which is more time consuming and probably more expensive, but possibly a better option for patients like us. To be honest, he probably didn't even realize I have so much other stuff going on, I could tell he'd barely skimmed my notes, that being said I can't see how he'd manage to miss my braces, they are silver and blue ..


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## Muppetgirl

I couldn't agree more. Both Alendronics common and more unusual effects are unlikely to tip the balance in favour of taking it, upright or not! Like you say there are other drugs, though I don't think I'd heard of the injections before. I seem to recall the others are more expensive, which might have something to do with it. Let us know how you get on.


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## valleysangel92

I saw my nurse today. She has no problem with me being on alendronic, but she hasn't received anything from endocrinology about it yet, so we're waiting for them to get in touch with her/my consultant before they can do anything. I mentioned my jaw surgery to her and she said that she thinks we should wait until I've seen my orthodontist and spoken to them , she says there is no hurry for me to start it and that it wouldn't be an issue if we had to wait until after my surgery for me to start it. We are ordering another DEXA scan to see if the osteopenia has progressed any further, the waiting list is 3-6 months so by the time it comes through it will be about right for when I'm due. 

Currently my hemoglobin is normal, my iron is the bottom end of normal (10.0) my ferritin is 6 (meant to be 15) so I need to eat as much iron rich food as I can (isn't that fun with crohns?) and my white cell count is still elevated so theres still something simmering, I'm hoping this means that there will be something visible on my scope and it won't be worthless from the months of steroids (now down to 5mg... yay! )  

My liver and kidney tests are fine so we are upping my 6MP to 75mg now. This will be my full dose for now, we may need to up to 100mg in the future but at the moment 75 should be enough. I'm continuing my steroid taper and we will have a follow up in 2 weeks. Hopefully after that we will be able to space things out a bit more and I'll have less frequent appointments.


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## fozheart

I have been off of the forum for a while, and am going through your thread to refresh my memory.  I am having a hard time taking all of this in- but I am thinking about you, and hoping... and praying!


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## Muppetgirl

Glad to hear they will review with the dexa scan...at least you will know where you're at before reaching a decision.

I hope the scope is indeed helpful...though obviously hope for good news...it must be coming up soon?


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## valleysangel92

I have my scope on Monday afternoon, dreading the prep! 

I missed a call from my nurse on Thursday, but we didn't realise until yesterday afternoon when mum checked the house phone, she'd left a message asking me to call back and sent an email (again I didn't realise, my boyfriend had been with me so I hadn't been on the computer) . I phoned back but must of missed her, so checked my emails and she said my white blood cell count had dropped to 2.6 ( normal is over 4). On the test 3 weeks ago it had been 12.1 so that's a fairly rapid drop. She left instructions to stop my 6mp and I'll need to have bloods next week,  I emailed her back and got an automatic response saying she's out of the office until Tuesday and she will reply to all emails then. So I will know more then. One day something will be straight forward -_-.


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## fozheart

Oh sweetie- be careful, especially around people with colds, etc.!  Good luck with the scope!


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## valleysangel92

Well that was absolutely awful. I ended up having to have 2 scopes back to back. 

I barely felt any effect from the sedative or painkillers apart from maybe a tiny bit spaced out. 

They decided to use a peads scope for me because I'm so small. But it backfired badly. They got all the way to the ceacum and were  ready to take some biopsies when the scope wash failed and they couldn't see what they were doing. At this point I was in a lot of pain and felt like I had a knife in me not a camera. They had to stop because they couldn't continue safely. 

They gave me a few mins and then explained what had happened and said I had two options. Either leave it and probably have to come back at a later date, or try again with a different scope. Well I wasn't going through all that for nothing so I allowed them to try again using an adult scope. The second time was even more painful,  haven't felt pain like it since I had my surgery.

To top it all off, it looked like things were normal. So I'm not even any clearer on what's actually going on. We know I've had inflammation because it's been showing in my bloods and the fecal cal but now we have a guessing game on where that inflammation is. They did manage to get biopsies the second time, so I'm still hoping they will show something useful so that going through it again wasnt a total waste. 

Stomach currently feels like it's in tatters,  going to be sore for a good few days I think.


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## Muppetgirl

Oh valleys. I really am sorry to hear this.:hug: Both the meds and scope issues. I know you had a similarly rough time with your last scope, its awful that it happened again - twice. Did they look after you? I do hope they were kind. Was it your guy? 

I don't know if there is an issue with peadeatric scopes. I have had  one before that was missing a part. It is horrible being awake through such severe pain, people don't really appreciate it unless they have been there. At least it is over now and they got some biopsies. I hope they are helpful. How long till you have the results/see your consultant? He will have some ideas for you I'm sure.

Definately put your feet up and watch a good film or something. I was running to the toilet for days after my last scope. Never been like that before but I think if things were rough it can sometimes take a while to recover. Hang in there. We are here if you need us.


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## valleysangel92

To be honest, my last scope was a walk in the park compared to this. It wasn't my guy, but the doctor was nice enough. Poor guy had to battle my terrible veins and I think he felt bad enough about that without the other stuff that happened. Maybe if it had been mine I would of got more sedation. They were asking me a lot if I was ok and trying to comfort me. And the nurses were very nice. 

It was working fine to begin with and then the wash function just wouldn't work, so they couldn't clean the camera lens or something?  But it was just so horrible that they'd gotten all the way through and were just minutes from being done when it happened. They did give me the choice about going head with the second and they did say that if I needed to stop then just say so, but I knew I'd just have to come back if I did so I gritted my teeth and tried to focus on breathing. Hopefully they will see something. If not then I guess at least it will let them know we are most likely dealing with small bowel crohns. They had to fill in a report to say there was an 'adverse incident ' so that might help my case for more sedation or at least more pain relief in the future. 

I will talk to my nurse tomorrow I hope to see what's being done about the 6mp situation then I'll see her next week. She might have the biopsies then, if not they'll contact me as soon as they are in. 

It's pretty late here so I'm just sat in one of our recliners and will tuck up in bed soon. My last scope I was sore about a week later, and I've had double today so expecting a bit worse. Planning a dvd and blankets day tomorrow! Will have to drag myself out for bloods sometime before the end of the week but other than that I can rest.  Thankyou. The support here has been lovely


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## Muppetgirl

Your 'sedation' does sound very limited, even for the non twilight type. Did you have gas and air option alongside it? I've not tried that but I've heard it offered. I'm glad they recorded it as an incident. It must have been a horrible moment when they got that far and told you it was a no go. How are feeling without the 6mp? (Pls forgive my ignorance, I don't know how fast/slow its effects are). Did it help to talk to your nurse today? Hope you've had a much nicer day with films and rest. Take care.


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## valleysangel92

I've heard of some people here getting gas and air but I've never been offered it.. They always have me on an oxygen mask,  some people just have the nasal cannulas but I always get a mask, maybe because I'm a higher risk with my asthma and tachycardia ( my heart was going crazy half way through the first procedure). 

I think it would of been easier to deal with if it had been towards the start. 

So far I'm not sure really, over the weekend I felt ok ( I stopped it Friday)  but the prep and scope have caused a lot of pain. I feel a little sick at times which for me is a common crohns symptom but could also be from being in so much pain  I suppose. It took me about a week to feel somewhat better after my last scope so I'll see how I feel in a week or so (I'm expecting it to be slightly longer with the double scope) . 

Yes she called me and said the bloods can wait until next week when I see her, so I can just rest this week now. She says once my bloods are back up we can try the 6 mp again which is really reassuring to know


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## fozheart

Aww.... I am sorry it was so painful, and twice!  You seem to get tortured much too often!  I hope that you are a little less sore today, and were able to relax.  You need a break from everything now!  Hugs!


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## valleysangel92

Thanks fozheart,  still feeling like I lost a fight with a very heavy object. I'm taking things easy and have made an appointment with my GP for Monday to have a chat about my fibro, I think getting that better controlled might help. Please take care of yourself!


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## fozheart

It still bugs me that you are diagnosed with fibro.  I don't know how many times I have read of yours when at one time or another, you have had pretty significant swelling!!!!!!! (of major joints-)  I just don't feel settled with that.....  I know that you have had a lot of blood workups, but you know, it is not always clearly identified.  It could be seronegative, or something.  I know..... all we seem to do is chase for answers!  Hoping for relief for you!


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## valleysangel92

I still wonder about the swelling sometimes too, but lately its not been so bad. I think I have a possible combination of fibro and something else, apart from the swelling, fibro fits me well so I can definitely see the reasons for that diagnosis. If/when the swelling flares up again I'll let my nurse and consultant know, they haven't seen it before so will be a fresh set of eyes on the situation and will hopefully have some new input. I don't know what other testing options we have, maybe we would just need to repeat a few things but I'm confident that if there is anything being missed then they will find it, they are far more attentive and sympathetic than any of my old adult teams. Its like being back under my peads team, which is lovely.


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## Muppetgirl

I'm sorry you are having a lot of pain. Keep taking it easy, it has only been a few days after all. I'm glad that the 6mp is still an option for you in the future. Sending lots of well wishes your way.


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## valleysangel92

Thankyou,  I'm glad too, it seemed such a good med for me until the white cell issue so hopefully we can resolve it. 

I'm still taking things easy,  just resting at home and appreciating what a lovely family and boyfriend I have. My boyfriend sent me a card and a necklace in the mail today to cheer me up. Small things like that make me realise that despite the rubbish hand this disease has given me I'm still lucky to have what I do.


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## fozheart

What a wonderful, sweet sounding boyfriend that you have! I remember reading on one of your threads that he lives a distance away. That is great that you feel confident with your current team. Please do not think that I am ever intending to second guess your doctor or diagnosis regarding the fibro. The field of rheumatologist is just so very tricky!


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## valleysangel92

Yeah I lucked out there that's for sure! I don't feel that at all, I really can see what you mean, and I agree that the swelling part of things doesn't add up, so will be making sure if it comes back I'll show my nurse and/or consultant. 

I had my fibromyalgia review this morning. Really don't know what to make of what happened. A few weeks ago I went to see my GP and told her my symptoms had been getting worse, so she put me on a generic version of prozac. She said it helped some people with fibro and knowing that amitryptiline is also an anti-depressant and it does help my pain, I assumed it was the same sort of effect. I tried the new med but I didn't get on with it, made me feel awful, like i constantly wanted to cry which isn't like me and they also made me feel really sick so I stopped them. 

I went back today, said the other meds didn't agree so she's switched me to sertraline, which is another anti-depressant which works the same way as the prozac, they are both selective serotonin re-uptake inhibitors. I've had a look but I can't really find any information regarding these being used to treat chronic pain. I've tried asking other sufferers but pretty much everyone thats responded has only been given it or only found it helpful for depression. I am now starting to wonder if this doctor actually thinks I have depression or some type of anxiety disorder. If this is why she's given me these then I don't feel I should take them, as I don't think I've got depression. Yes sometimes I get a little down, but not more than anyone else, I have spoken to my boyfriend who I open up to more than anyone, and he thinks there's no way I'm depressed. I never get down for more than maybe a few hours, I can always find things to be glad or happy about and I feel I respond to stress well. 

The doctor has made me a follow up appointment on the doctors on the 12 December, by which time we would be able to tell if these meds will agree with me, but I'm really in two minds about taking  them. There are so many nasty side effects, and I know that for those with depression its worth it, but if they don't have any effect on chronic pain then I don't feel I should use them, there are also warnings about interactions with other meds I regularly use (omeprazole) . So confused.


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## Muppetgirl

I hope you are feeling a bit better since your colonoscopy. I'm glad you have such a thoughtful boyfriend!

Re the meds issue for your fibro. You are quite right that prozac and its SSRI cousins are not related to amytriptiline (aside from being classed in the wider group of antidepressants of course). Amytriptyline is a part of a much older group called tricyclics. They work in a different way, hence it's prescribe for pain and poor sleep. I work in health not pharmacy so I can't give you much more detail I'm afraid. 

You have the absolute right to ask your doctor for a rationale as to why she is prescribing SSRI's. Maybe start with this and if you don't feel happy with her explanation then get a second opinion. I'm sure you are aware of the controversies regarding the cause of fibro; this can lead to some quite diverse opinions among the medical community and it must be very difficult to work out where each doc is coming from if they are not straight up about their own view. However, I think the main issue is about good communication which is going to give you a much better working relationship and trust in your care.

I'm sorry you have this on top of everything else. Sending well wishes your way.


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## valleysangel92

Hello, I'd just come back to update, what good timing. I'm still feeling pretty sore, could barely move from the pain this morning. I'm down to 5 mg of Pred every other day and not back on my 6 mp yet so it's possible that's adding to it. 

I took another look online and managed to find some UK based information from WebMD  teamed with one of our major pharmacy chains. 

The information says that ssris are used in fibro because there is a train of thought that contains the theory that fibro pain stems from a malfunction in the way the brain and spinal cord receive pain signals from nerve cells. Serotonin can have an effect on these cells, so increasing serotonin can, in theory, decrease pain. SSRIs can also increase the pain relieving effects of tricyclic antidepressants such as amitryptiline. The information makes it clear that when used for fibromyalgia it is not because the doctor suspects depression. To be honest, I know this doctor quite well, I regularly request to see her when I need a GP appointment and I think if she thought I had depression she would be more honest, which is partly why I was so confused. On the plus side I got a confidence boost from my boyfriend and family,  all of who were quick to say there was no way I was depressed and they think I've coped pretty well. 

Now ive found this I feel more comfortable about them.. It seemed strange to me a doctor I trust so much and who has done so much for me in the past would think like that, so this makes much more sense now. I guess she thought I'd know where she was going with it since I usually know what meds are for etc. 

She also fixed a problem with my pentasa script. They practice had it down as granules not tablets. 

I am still planning to ask my nurse first, since I need to double check the interactions with omeprazole and antisickness. 

Thankyou for all your support


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## Muppetgirl

That is great that you found the missing link. And it hasn't affected your relationship with her. Sounds as though she would have been willing to explain her rationale anyhow. Seems like she is keeping an eye on a lot for you. Is fibro rountinely managed by the GP? Hope its helpful next time you see your nurse.


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## valleysangel92

In the UK fibro is either managed by a GP , rheumy or pain specialist, because I have a good working relationship with my GP, I have mine managed there, if it gets to a point where they don't know how to help me they would refer me on to a pain clinic. 

I have an appointment with my nurse later, she's always very helpful. It's a good thing too, I think I might have just passed some blood, it wasn't fresh red, it was dark and stringy, kind of what it looks like when you have a period and pass blood thats a few days old. I've never passed blood before, so not entirely sure. Hoping I'm wrong.


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## valleysangel92

The appointment went okay, she wants me to hold off starting the sertraline for a moment, as there are warnings in the drug information book she has that it has to be used with caution in those with GI issues, but it doesn't really say why, so she wants to contact the drug information department first. 

I had some more bloods today, she'll email me the results tomorrow, if things look ok then she'll let me restart 6mp at 25 mg. 

My iron is high, but she cant recheck that yet because the lab won't let her do it that frequently. 

I have a blood form for 2 weeks time to get my fbc, liver etc checked and will have my iron rechecked then too. I'll see Allyson (my nurse) in 3 weeks, she wanted to see me in 2 but is away at an all day meeting in Birmingham, so it had to be 3 and she didn't want me waiting that long for bloods. 

We have my biopsy results - no significant inflammation, no mucosal changes or parasites etc. Which is good, and what I was expecting really. She agreed with me though that it could simply be that the inflammation was just out of their reach. She still wants me on treatment. 

Things like this make me realize just how much better my treatment is with my new consultant and with Allyson, they go out of their way to help me even if they don't really have to (eg, looking up information on meds prescribed for a different condition and being willing to go to another department to find it) and they never play things down. My previous team probably would have told me I was fine if a test came back clear but there is none of that now. She expressed concern that even if there isn't inflammation, leaving me untreated was not a good idea as I'd simply relapse. She didn't tell me I was wrong or say there was no reason for me to have symptoms, she simply agreed that it just didn't show on the scope. 

She isn't too concerned about the blood right now as she thinks it could be from the scope, so just something to look out for. She thinks I feel rough because of the scope being repeated, she said one is bad enough so two is bound to knock me off kilter.


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## fozheart

I am just checking in really quickly.  I am so glad that you are working with such a good team.  (Ughh... I know I am repeating myself with my comments.... I just want you to know that I am thinking of you!  It is good that your biopsies came back good, but you still don't know the source of the inflammation?  Good that they are double checking the one med that they want to start.


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## Catherine

by iron do you be ferritin level?  Ferritin can act as a marker of imflammation.


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## valleysangel92

Thanks fozheart! Hope your feeling a little better. 

They think the inflammation might be in the small bowel.. Or the meds might have kicked in and stopped the inflammation just as I was getting my scope... It's hard to tell with my bloods being off whack now. But I was starting to feel better on the 6 mp.. 


Catherine - thanks, I do mean iron not ferritin, my ferritin has been low recently, my nurse always separates the two and it's definitely my iron count thats high. 

I got an email with the results of yesterday's bloods,  white blood cells - 2.9 ( 4 - 11 is normal)  neutrophil 1.4 (2.5 is normal) so have to keep off the 6 mp. I have to get my bloods rechecked next week instead now.


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## fozheart

:hug:Oh, it's always a guessing game, isn't it?  If they think it is in the small bowel, I hope that they do a test that will show whether it is or not.  Good that you are dropping the immunosuppressant for now- your WBC should come up fairly quickly.  I hope that you are feeling a little better?


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## valleysangel92

I don't think they are planning on doing any more tests for now, I already had an MRI in hospital that was clear and pill cams aren't used as much in the UK because of cost and my symptoms were responding to treatment before we had to stop the 6mp, I have gained a healthy amount of weight and can eat and drink much easier than before. When I have my bloods checked it will be 3 weeks since we stopped them, so hopefully there will have been more improvement. 

Once my bloods are back up we'll go back to the 6MP, hopefully it wont be too much longer, I take my last steroid Wednesday and after that I'll only be on pentasa. I'm still feeling tender and sore and appear to be coming down with a cold ( which was inevitable, when I went to the doctors last week I had people coughing all over me and they never cover their mouths on the buses either).


----------



## valleysangel92

I think I'm going down hill. I am now completely off the steroids and still not back on 6mp so I'm relying solely on pentasa. 

I am still feeling sore and tender and I have some upper gi pain which stopped after a few weeks on steroids but has now come back. My appetite is pretty much non existent, I am having to literally force myself to eat. I get pain before I've even half finished a meal and im feeling full much sooner than normal. I am hoping that part of the appetite change is down to the raging cold I've had this past week and not just me going backwards.


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## Cross-stitch gal

Oh no Nicola!!!!  I'm sorry to hear that you're not doing well.  Sending lots of hugs your way...  :hug::hug::hug:


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## Muppetgirl

Hi Valleys, how are you feeling now? Are you managing to eat anything or manage fluids at least. Sorry I haven't been around much, haven't been doing great either. Do contact your team if things are getting worse. :hug:


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## valleysangel92

Hello

I am doing a little better, my appetite is improving and I've shifted the cold. (Quicker than my healthy boyfriend did, weird.)  

I had horrible pain at the weekend and then things started settling again, but tonight I'm in increased pain again. It's 2am and I'm sat up in bed because I can't settle. And I have this weird stabbing pain in my lower back /right hand side when I breathe in. 

I got my blood results yesterday. I still can't start back on the 6 mp. This is seriously rocking the boat now I think. My white cell count is now 3.5. It needs to be at least 4 before I'm allowed to start the 6 mp, although surely if they wait till its only just normal then let me back on it the bloods will just drop again?  

I'm sorry you aren't doing so great. Sending big healing hugs.  Or cwtchs, which are even better, to both you and Cross-stitch gal. (A cwtch is a Welsh hug).


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## Cross-stitch gal

Glad you're doing better with your cold.  But, sad to hear of the horrible pain.  Hopefully things settle down for you enough to be back on your 6mp.  Sending lots of big hugs back at ya!


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## Muppetgirl

I'm glad your appetite is a bit better. No good about the pain though. How low in your back is the pain? Do painkillers make any difference? I can understand why you would anticipate it just happening again, but I will cross my fingers that it does not. What does your IBD nurse think? 

Thank you for your kind thoughts. Sending cwtchs right back at you too! :hug: < special cwtch smilie!


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## valleysangel92

It's pretty low, towards my pelvis area. Painkillers made a little difference but not huge. Thankyou, hopefully it won't and it was a one off. I've not spoken to my nurse other than a brief email about blood results. I see her Wednesday so hopefully we'll have a good chat about it then. 

Aww  thankyou.


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## Muppetgirl

I was wondering if it was your liver, with all that you are going through, but it sounds lower than that. Bah I hope it leaves you alone soon whatever it is. Hot foot it to the docs if it gets worse though. Let us know how you get on.


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## valleysangel92

Yeah I think it's definitely lower than my liver... Can't remember how low kidney pain can be though?  Or bladder?  I get a lot of UTIs.. And have been told that pentasa can affect the kidneys. Hopefully whatever it is takes a hike soon. I will be sure to get in touch with a doc /my IBD team if it gets any worse, thankyou. I will keep you updated


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## Muppetgirl

Hmm...I find kidney pain awkward to identify because it can radiate in either direction...but generally about level with the crook in your side where an old fashioned waist would be. I find bladder pain doesn't radiate so is more in line with my hips but it might radiate for some. I hope it isn't either but it sounds like its not one of your 'normal' pains.


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## valleysangel92

That sounds about the area.. Hopefully it's just my body being weird. Or maybe it's a fibromyalgia thing. It isn't something I'm used to, my pain is usually at the front around the area where your  appendix would be, or just below my rib cage in the centre more recently and usually either constant or cramping. Thankyou for all your input.


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## nogutsnoglory

Do you flank pain in your back or sides? That could be a sign of kidney issues. I'm with you on never knowing what's fibro.


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## valleysangel92

Sometimes I have pain around that area,  but don't know if it's maybe a little low to consider it as flank pain (we don't call it that much) . They've been regularly testing my kidneys in my routine bloods so I'll see if they've noticed anything. I always have to think really hard.yo try and work out if it could be a fibro pain.


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## valleysangel92

Well I saw my orthodontist and my IBD nurse today. 

First off - orthodontics - I cannot take the alendronic acid while I'm having treatment or healing. If I started the alendronic acid they would have to immediately stop my brace work and would not even consider surgery. This is because they do indeed have the potential to stop the jaw healing and potentially cause the bone to die, leading to the need for partial removal. So they are going to contact endocrinology and asked me to speak to my crohns team. They say that at the moment they are happy to proceed because I have not started the medication, and they would like me to talk with my family and other doctors etc and see what they have to say about things and see what I would like to do. I need to weigh up the pros and cons of the surgery against the risk of not having this medication. Currently I do not feel that my bones are at enough risk to warrant throwing away years of pain and waiting. If my DEXA scan shows progelression then I will need to rethink. 

I spoke to my IBD nurse about it, she says that if I want the surgery I should go for it. She thinks if I keep taking my vit D and have some extra dietary calcium (not too much)  I should be alright for now.. 

From a crohns point of view she is not surprised that I have been getting more pain since I'm not taking the 6 mp or any steroids. We did bloods today and we'll see what they say and go from there.
My iron was low again (but not my hemoglobin)  so she thinks the high level was a blip. No need for iron supplements yet, just iron rich food


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## Cross-stitch gal

Fingers crossed that they'll be able to do something for you soon.  Hopefully then things will start calming down for you.  Sending you lots of hugs!!!!


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## Muppetgirl

I'm glad that you got to speak with both. At least you did not start the alendronic and have the options taken away from you. It's really hard having to chose to privelege one health problem over another, but for what its worth I think it sounds sensible to pursue surgery given the pain you experience and the investment you've already made. 

Funnily enough I have recently had a tooth losen and partly come away. It led me to do some research. It seems there is also some evidence that osteoporosis weakens the jaw bone making displacement of the teeth themselves more likely. However, I think that that's somewhat down the line; when fractures are occuring more generally. 

Personally I find that most of the good foods for osteoporosis are bad foods for my digestive disease. Do you find that?

I hope the blood results lead to things progressing treatment wise. How is the pain now?


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## valleysangel92

Thanks both.. 

I've made so many sacrifices to have this surgery, not doing it would be devastating. 

Fortunately I am not yet at the osteoporosis stage. I was diagnosed with osteopenia which is not as drastic but haven't had a dexa scan since, I'm having one in the next few months and hopefully it won't show too many stages. If it shows osteoporosis we will have to think much more carefully about what we do next. I'm really unimpressed with the endocrinologist, even if I wasn't having the surgery, the alendronic wouldn't be an option with bracework being done, so how he didn't mention that I'll never understand. He even laid into me for not having been taking it before.. Hopefully he'll just tell the orthodontist and my IBD team an alternative and I won't have to deal with him. I'm so glad my IBD team and orthodontist are so diligent. 

I think I may have heard something like that before..I can't remember where now but I'm sure I read something about osteoporosis potentially causing teeth loss or movement. 

I've only been told to eat more cheese etc and drink milk,  I don't find they upset my stomach, but I have to be careful because of my calcium levels spiking..  What kind of things have they told you to eat?

I hope so too, it's been a long few weeks. I've been in a lot of pain the past few days especially, hopefully it won't be long before I'm back on the proper meds though. My nurse will email as soon as she gets the results.


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## Muppetgirl

I hope the scan results are positive. Is the Dexa scan likely to be before the surgery? Yeah he should be able to come up with an alternative drug. I'd be interested to hear what he goes with. Thats something I want to look into as well. 

Yeah that's what I read: links to teeth motility and possibly peridontitus (sp?)

They recommend dark green veg, nuts, seeds, beans etc!!  Not going to happen! Especially as the veggies are meant to be hardly cooked so they keep the nutrients. Cheese and eggs is about all I manage.

I'm sorry about the pain. It really does take it's toll after a while. I hope the blood get processed quick.


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## valleysangel92

The scan will definitely be before surgery. It might be another 6-12 months before my teeth are in the correct positions for them to operate. Hopefully he won't mess around and will respond in a reasonable amount of time. 

That's interesting.. 

Oh gosh I'd have trouble with all that too, my stomach would never allow it. I manage a decent amount of eggs. 

Thankyou, if I'm lucky it'll be today


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## valleysangel92

I got an email from my nurse earlier. I can finally start back up on my 6 mp. Hopefully this is the time things turn around.


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## Cross-stitch gal

Yay to be starting back on your meds!!!  I too hope things start turning around for you soon!!!!


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## Muppetgirl

:applause: I second that yay! I hope it helps settle the pains. Will cross my fingers that your white blood count stays up.


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## valleysangel92

Hi all. Sorry for the lack of updates lately. 

I didn't do too bad over Christmas, even managed to have a little drink on my birthday  . 

The last few days have been a different story though . My stomach has been so sore, right over where my crohns pain usually is. My IBD nurse isn't back until Tuesday so have been on my own until then. 

I have a doctor's appointment tomorrow for my fibromyalgia and to discuss my sick note / return to looking for work. I was going to request to stop the sick notes and begin looking for work again, but after the last few days I don't know if that's such a good idea. 

The last time I had pain this bad for more than a few hours was when I was admitted to hospital last summer. I really hope I'm not headed back down that road. 

I'm only taking 25 mg of my 6 mp and that's supposed to be my dose until at least the 21st when I'm due to see my IBD nurse. It's probably not properly back in my system yet but it's really not doing anything. I have pentasa too but might as well be taking sugar pills.


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## Cross-stitch gal

Glad to hear Christmas and your birthday went well!!!

Oh no!   I'm so sorry to hear that you're not feeling well again!!!!  Hopefully on tuesday you'll get some sort of help and that you'll be able to get into the doctor earlier.  Sending you a whole lot of hugs.


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## valleysangel92

Thankyou. I will try and email my nurse Tuesday and she might bring my appointment forward. She did want to see me earlier than that anyway but the receptionist said they were too full. 

I might try and get some pain meds tomorrow, have a very low stock at home but the GP I'm seeing isn't so keen on giving pain meds other than paracetamol (telynol) .


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## Muppetgirl

Sorry the last few days have been pain filled. :hug: How are you feeling now? Was the doctor helpful? Any luck getting through to your IBD nurse today? Really hope it lets up and you can avoid the hospital...but if you need to go... utahere: !!


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## valleysangel92

Ironically now my nurse is back the pain has settled -_- so didn't end up calling her. The doctor did give me some stronger pain meds though so if it comes back I have that, and will call my nurse or email her as soon as it happens. 

I now have a new problem though, my belly button has been really sore and it's been weeping and there's a little open sore on the inside and now it's swelling, so I think there might be a bit of an infection or something. One of my scars from my surgery goes around my belly button and don't want to risk any infection that is there getting into that. So I'll be getting up tomorrow and trying to get into the doctor. Eck.


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## Cross-stitch gal

Well.  At least the pain has gone down.  But, that's what seems to happen to me though.  You're feeling awful and then by the time you can be seen then you're feeling just fine!

Not a good thing about your stomach though.  Hopefully they'll be able to take care of you soon. :hug:


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## Carrie

Goodness, you've sure been dealing with a lot. NHS England was bad enough to deal with when I lived in London, but it sounds like NHS Wales is more trying!

I, too, have a scar going round my belly button, and when the weather is cold and dry, it tends to get red with some strange, crusty drainage (wonderful visual, I know). From what I could tell, it's just a yeast infection because belly buttons are gross and difficult to dry thoroughly (am I the only one who thinks belly buttons are gross?)--especially if you refuse to probe in them. I hope what you're experiencing is similar and nothing to get too troubled over. You've had enough to deal with already!



valleysangel92 said:


> Ironically now my nurse is back the pain has settled -_- so didn't end up calling her. The doctor did give me some stronger pain meds though so if it comes back I have that, and will call my nurse or email her as soon as it happens.
> 
> I now have a new problem though, my belly button has been really sore and it's been weeping and there's a little open sore on the inside and now it's swelling, so I think there might be a bit of an infection or something. One of my scars from my surgery goes around my belly button and don't want to risk any infection that is there getting into that. So I'll be getting up tomorrow and trying to get into the doctor. Eck.


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## valleysangel92

Thanks cross- stitch, always the way isn't it!  

Carrie - I think it's where I live to be honest,  we don't have that many hospitals with proper fully equipped A+Es within a reasonable drive. We have the one I usually get admitted to in Newport and then a big university hospital in Cardiff which is nearly an hour away by car. The hospital I usually go to for outpatients has an A+E but only deals with minor things as it's nurse lead, so anything more than a cut and you're wasting your time there, so we don't even bother. Most people go to the one in Newport, even people over an hour ago because a lot of the local hospitals don't have full A+E or can't do more than minor ops etc. 

The doctors have a similar issue. The satellite practice by me only has one doctor at a time so it's hard to get in, and the bigger practice caters for about a 10 mile radius. Ridiculous. This is partly because the other doctors in our area is useless, I was under them until I was about 15. I had severe pain in my stomach and they told my dad we had to wait a month if we wanted to be seen, my dad told them to shove it. 


I have seen the doctor today, I do have a bit of an infection so I have some cream to put on it and I have to go back if it doesn't get better.


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## valleysangel92

Should I be contacting my IBD nurse to say about the infection?


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## Cross-stitch gal

I would, especially if it doesn't seem to be getting better and if it's at/close to the spot where you've had surgery before.  Please keep us updated.  Xxxx


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## valleysangel92

Thanks hun, I'll pop her an email. Was hoping shed of contacted me about the bloods I had done just before Christmas, but she hasn't yet. Sometimes the lab 'sits on' the results and she doesn't get sent them for a couple of weeks. 

The infection seems to be coming from inside my belly button, and my scar is going around the outside so it's easily possible for it to get caught up in it. I've been putting the antibiotic cream on the scar as a bit of protection just incase. 

Hope you're doing ok?  Sending hugs xxxx


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## Cross-stitch gal

Sounds like a plan!  Yeah, since she hasn't seemed to contact you looks like contacting her is gonna be a good thing.  Know what you're talking about with prevention though.

I'm doing alright, just busy.  Cuts from the biopsy are almost all healed up.  Just 3 places where the needle went in that are still healing.  Still fighting to keep my medical insurance, lots of stress.  Also, been trying to strive to help pass this petition we're all part of here in the US.  But, we're so behind that I don't think it'll make it.  Will pm you when I get the chance.  Take care.  :hug:


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## valleysangel92

My belly button seems a little better, the discharge has stopped but it's still swollen, so carrying on with the cream for now. The doctor didn't tell me how long to use it for, or even how much to put on at a time, so I'm just making sure it's all covered and that the scar is covered, and then putting a dressing on to keep the cream on. It seems to be working alright. 

Had some increased tummy pain, not really sure why. It seems to like kicking off at random intervals. It might just be because I'm still only on 25 mg of my 6 mp due to us needing to be super careful. I'll see my nurse on the 21 st so hopefully we can up it. 

I'm glad you're doing ok! Make sure your not over doing things and are taking some time to relax as well x


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## Cross-stitch gal

Glad to hear that it's healing and the discharge has stopped!  Not so for the pain.  Hopefully your appt on the 21st will go well and things will continue calming down for you.

What are you talking about over doing things?  I'd never do anything like that!!!  HeHe!!!!  Just got to take things as they come and do the best you can...


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## valleysangel92

If  it's not one thing it's another. My fibro is kicking my butt ( I think) . 

My boyfriend came to visit yesterday and we were watching TV in my room and my hips/ back were achey and a bit sore but nothing unusual, so we went down to grab a drink and sitting on the sofa was agony. At bed time I went up to get changed and my boyfriend comes in to say goodnight etc ( I only have a single bed and he's 6ft 4 so he sleeps in the spare room here)  and finds me doubled over on my bed in floods of tears with my jeans half off. I had tried to get changed and the pain had become so severe I couldn't get them off. He had to help me get pain meds ( which I'm supposed to use sparingly and had used every day for about 4-5 days so had been trying to hold off) , help me to get changed and get me into bed. As bad as the pain was, the feeling of being so dependent on him was almost as bad. I felt like I was back to being a child. I'm not sure if this pain is fibro or something else, I was once told I have a curve at the bottom of my spine, but it didn't show on an xray and no other doctor has mentioned it, so I don't know if that was right. 

I've had pain all day and now it's getting later it's getting worse again. My GP tells me there's not a great deal more she can think of to try as the sertraline didn't work so we've just upped what I was already taking. Surely I can't be expected to put up with that sort of pain though, there is no way I can function like that. Cocodamol (30 mg codine 500 paracetamol) is barely touching the pain, and I have to be very careful with the tramadol I have as it's very difficult to get a script for it (it's now a controlled drug here) . Most people I've spoken to with this are on either things like gabapentin which are painkillers designed for nerve pain or use oramorph or morphine patches, none of which I've ever been offered even as a short term thing. I don't really want to be on morphine, but the gabapentin and similar meds seem to be a much better option and they seem to really make a difference. My sister takes them for nerve pain and finds them really good. I'm not even sure my GP would think of prescribing it, or giving me a referral to a pain clinic or physio therapist. She keeps suggesting it's something I have to learn to live with. To a certain extent I know that I will never be 100% pain free, but surely she should be offering me some options? Sorry to moan. Feeling so deflated.


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## Muppetgirl

I'm sorry you are in such a lot of pain. If you want to widen your treatment options then a pain clinic could be helpful. I seem to remember from previous conversations that your gp tends to manage your fibro, however as she has already stated she has reached the limit of what she can come up with, then specialist help is appropiate. Drugs such as gabapentin are frequently prescribed (where appropiate) in these settings. Normally they have a physio as part of the multi-disciplinary team, so if they think this will help, you would not need a seperate referral. Analgesia varies obviously but they often adopt a sliding scale of options. As you probably know they often treat people with fibro, the pain mechanisms are complex esp with co-morbidities. A full assessment of your pain can be enlightening in itself. I hope you find something that helps.


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## Cross-stitch gal

Not sounding good!!!   Sorry you're going through all this.  Hopefully they can find something soon to help out.  Sending lots of hugs your way...


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## valleysangel92

Muppet girl - yes my GP handles my fibro, and the one I've been seeing a lot of recently doesn't seem to know about the other options, or isn't willing to use them with me. My sister has been referred to a pain clinic for a while, infact her doctors gave her a referral within a few months if that, but mine have never even mentioned me getting one. My GP also seems to be very concerned about giving pain meds with my crohns, she held back from giving me cocodamol for a long time, but as soon as I said my IBD nurse had ok'd me using them she gave me a script for 200 of them. 
I've heard a lot of people have found physio helpful, especially some of the heat therapies and self massage techniques they teach,  and I'm willing to give anything a try, and surely it's better for me than taking narcotics. I know there's a lot they are still learning in regards to fibro, and I suppose some doctors find it harder than others to admit they don't know what to do and refer you on. Maybe I need to see if I can get in with someone else if this doesn't ease off, get a fresh pair of eyes on it. 

Thankyou 

Cross stitch gal, thankyou, as always a great support


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## StarGirrrrl

If your Dr isn't suggesting something then no reason why you can't outright ask for a referral to Pain Management or someone more specialist in Fibro.


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## valleysangel92

Oh deary. 

I saw my IBD nurse today. We wanted to up my 6 mp, but my bloods are borderline (white blood cells) at 4.1 which is right at the bottom of normal. I had more bloods today so my nurse is going to contact me once she has the results and let me know where we stand. 

I've had a lot of pain again the last few days so we've decided to try entocort ( buedesonide) to try and help in the mean time. 

My heart rate was 152, it's usually around 125 and they let that go, but now they are starting to think there's more to it. My blood pressure has also been consistently high at 144 ( top end of normal is 120)  so she's going to be contacting my GP to let them know what's happening and she'll see what my pulse is like next time I'm there. 

I'll be going back to see her in 3 weeks


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## valleysangel92

Oh and I've lost weight too. I was 59kg last time and I'm now 55 kg.


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## Cross-stitch gal

Oh no!!!   What am I gonna do with you?  I'm sorry things aren't getting any better.  Hopefully you'll hear back from them soon.  Take care of yourself.


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## valleysangel92

You should of seen the look on the hca's face when she looked at the monitor -_-.  Can you get me my bubble?  

My nurse is good at contacting me as soon as she gets the results, so hopefully it won't be long before we know if i can up my 6 mp. If they've dropped again on just 25 I don't think I'll be able to stay on it and we might have to think up a new plan. Hopefully the GP won't mess about and will let me know if they want anything done sooner rather than later, if they don't do anything I'm pretty sure my IBD nurse will sort it. 

Thankyou


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## Cross-stitch gal

I know it's pretty bad, but it is kinda funny when you can startle the workers at your doctor's office!  I have a feeling I'm probably the smallest one they've seen as a patient before (especially for one my age).  So, everything seems new for them.

I do hope you're right about them getting back to you quick.  Talk with you again soon...


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## valleysangel92

I'm glad it's not just me that thinks its kinda funny haha. 

I will be sure to come back and update as soon as I hear anything.


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## valleysangel92

I had an email from my nurse. My bloods have dropped again to 3.3 so we have to stop the 6mp for a week then i'll restart on just 25 again until i see her in 3 weeks. :ybatty:


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## valleysangel92

I am really wondering, is it really worth trying to go back onto the 6MP again? I mean, my blood cells dropped on 50 and on 25, surely that's a sign that I'm just not suited to them? How many times should we allow this to happen, each time i have to come back off them it just knocks me right back. It wouldn't be so bad if my symptoms were at least slightly controlled on 25mg, but they arent, I've spent the last month slowly getting worse and feeling horrible. I'm not getting anywhere like this and I don't know how much longer I should give it. I know the 6mp takes a few months to reach full effectiveness but unfortunately they aren't getting that chance and each time i come off them I end up back to the start. 


I've not even been told what the next step will be, there's methotrexate left to try in the immunosuppresant category and then theres the biologics. Funding for infliximab and humira is difficult here, but as I've failed mesalazine and effectivlely 2 immunosuppressants I should now qualify for them under the NICE clinical guidelines, but since my scope was clear they may drag their heals. Something has to give though, or I'm going to end up back in the hospital and will be stuck unable to get any further with my life. 

Sorry, thinking outloud, just had to get it out.


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## Cross-stitch gal

I was going to ask a question.  But, read on and you answered it.  I'm afraid that I just don't know.  But, agree that something's gotta give.  Wish things weren't so hard for you.  Xxxx


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## valleysangel92

Thankyou. I think I will have to ask them what we are going to do if my blood cells drop again. I just can't keep on like this,  it's just not right. Hopefully they will already of thought of something and just haven't told me what yet.. Xxx


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## Cross-stitch gal

Let's hope so...


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## Catherine

Have they ever test the 6mp blood levels?


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## Muppetgirl

I agree, its worth chatting to them about their thinking behind retrying you, when you are struggling at the low dose. I had always thought that individuals showing signs of bone marrow supression from a particular drug not only stop taking the drug but don't start again. Its not great for your body. It's making you understandably hesistant and that should count for something alone.

Just thinking with the pain side of things...its worth doing a bit of research if you do go ahead. I don't know about where you are but there is significant variability between clinics generally I think. I agree about the fibro. I also think there can be a bit of lazy or out of date thinking around pain generally. Also if it's likely you will have to wait some time - as it sounds like your sister is? - then it may be worth doing now and cancelling later if its not required. I hope on both these fronts things look up for you soon.


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## valleysangel92

I've never seen it on the form, just the usual ones and then esr. They did enzyme tests before they put me on Aza but I still reacted to it. 

To be fair, they've not really been able to keep me on the 6 mp long enough for it to reach a decent level I don't think.


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## valleysangel92

Muppet girl - that's what I've been thinking, my body clearly doesn't like it so surely it's better to move on?  My poor body has been through enough. 

I agree with the out of date thinking, it's much easier to just say 'heres some pain meds off you go ' than get into the proper diagnosis etc. It took me 9 years to get my fibro diagnosis because I just kept getting handed pain pills ( including ibprophen at age 12 and again at age 14, probably paid a part in my crohns kicking off at 15) . 

My sister had about 3 months wait, maybe even less, and has been getting seen regularly so the wait isn't as bad as for a lot of things. I'm actually wondering if the pain I experienced was deferred crohns pain rather than actual fibro pain, because the only time I've had pain that intense is from crohns. But then I know fibro can deteriorate fast too so it's hard to judge. Either way I need better help and a better plan than strong pain meds every day. Im not niave I know the fibro won't be fixed and it'll always cause symptoms and this is why I need a better plan.


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## Maya142

About the fibromyalgia -- Both my daughters have been on a number of meds. Neither has been formally diagnosed with fibromyalgia but several rheumatologists have said that they feel not all of their pain is inflammation (they both have AS). With my older daughter, it seems like they were wrong, but jury's still out on the younger one.

My older daughter tried Cymbalta and Nortriptyline. Neither really helped her but didn't cause any problematic side effects either. She much preferred them to Tramadol and stronger pain medications, which had much worse and scarier side effects. Doctors were much more willing to prescribe Cymbalta (approved for fibro here) than Tramadol.

My younger one has tried Gabapentin. We didn't think it was  doing much but when we tried to wean her off it she started having trouble sleeping due to pain, so it was clearly doing something. She has no side effects with Gabapentin besides sleepiness, which isn't bad since she only takes it at night. It's a relatively low dose. She also takes Tramadol and that helps a lot too.

A good pain management doctor is worth his/her weight in gold! One of my biggest regrets is not getting my daughters to see one earlier. They are finding more and more that opioids are not a good idea for chronic pain. There's a time and place for them obviously, but every pain management doctor we have seen says now the thinking is to use anti-depressants or anti-convulsants for fibromyalgia.


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## valleysangel92

Hi maya. Sorry for the delayed response. 

It took me 9 years to get a diagnosis for my joints. In the early days I was given ibprophen (had no symptoms of IBD but was still a big mistake looking back)  and sometimes cocodamol and they told my mum I'd grow out of it. 

I didn't really find the sertraline etc helpful and to be honest I wonder if my GP actually thought I was depressed, just because of some of the things she said and she did actually go to write depression on my sick note (allows me to get sick pay from the government)  until I said ' but I thought the meds were supposed to be for the fibro, I don't have depression ' and she said 'oh yeah its the pain'. I find tramadol helpful but don't want to be on it all the time, or cocodamol, but for now it's helpful. 

Meds like gabapentin are much more what I was expecting to be offered from everything I've read on fibro management, but it's never been mentioned. 

Unfortunately they are also like gold dust (hard to find) . I'm flaring crohns wise and I'm sure part of my pain is from that, it always gets worse just before my tummy does. Last week my back / hip were agony and the next day my stomach felt like I'd eaten a cheese grater. My doctors used to think the same but now I've got the fibro diagnosis they put everything down to that even though the two types of joint pain feel completely different. 
Either way pain management would be helpful, and I'm going to see what I can find out about provision in my area. (My sister is in a different area, under different doctors and may have easier access.)


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## Muppetgirl

How are you getting on now? Any decisions on the 6MP front? 

Yeah I think there is a fair bit of misunderstanding about mechanisms of pain too. You know your own body and can differentiate but it can be hard to get across the differences to people who are not familiar. I hope that you can find a doctor/clinic with more specialist knowledge, so you can get treatment for *all* your different pains. It sounds as though there is a bit of 'diagnostic overshadowing' with the fibro when you have another disease just as complex.:yrolleyes: Sending well wishes your way :hug:


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## valleysangel92

I'm still feeling pretty rough at times, the entocort has been taking it's merry time to start working, there's no leaflet in the box and I can't remember how long its supposed to take, I think its around 2 weeks? I'm at the end of my first now. Also, it's a really difficult medicine to get hold of and I have another 2 months worth to find somewhere.. 

On the 6mp front, I reluctantly restarted it last night as instructed. I see my nurse in 2 weeks and we'll do a blood test. Personally I want this to be the last chance with them, this on/ off thing is getting old and delaying my progression into getting a job/going back to study since every time I come off it my symptoms flare up. 

I have a dietetics appointment in just over a week too, usually they completely ignore my Crohn's and talk about my coeliac, which I can handle blindfolded. Last time I saw her (while in hospital) I asked for ideas for smoothies etc that i could make myself to get some vitamins etc.. her solution was to bring me a milk shake -_- so we'll see if she's got her brain with her this time :ybatty:

I hope to make some progress with the pain soon. My thoughts lately have been that when I get the Crohns more stable, if the joint pain settles it will show the doctors that it is partly Crohn's related and therefore should be treated differently to the fibro (which they've basically said they can't do much about) .


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## Muppetgirl

Sorry things are rough. I know how frustrating it can be when treatment hits a rut or an apparent option never truly gets off the starting blocks. Especially when large parts of your life are on hold because of it. I will cross my fingers for progress soon. :hug:

Hope the dietetics appointment is more fruitful too. I am seeing one myself but not too sure about it either to be honest.

It's a shame that you have to show them in a way. Hopefully you will find someone with an understanding of the interaction between the two diseases, at least on the pain side. So that the management options are more likely to be fully realised. Take care.


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## Marlena

valleysangel92 said:


> I'm still feeling pretty rough at times, the entocort has been taking it's merry time to start working, there's no leaflet in the box and I can't remember how long its supposed to take, I think its around 2 weeks? I'm at the end of my first now. Also, it's a really difficult medicine to get hold of and I have another 2 months worth to find somewhere..
> 
> On the 6mp front, I reluctantly restarted it last night as instructed. I see my nurse in 2 weeks and we'll do a blood test. Personally I want this to be the last chance with them, this on/ off thing is getting old and delaying my progression into getting a job/going back to study since every time I come off it my symptoms flare up.
> 
> I have a dietetics appointment in just over a week too, usually they completely ignore my Crohn's and talk about my coeliac, which I can handle blindfolded. Last time I saw her (while in hospital) I asked for ideas for smoothies etc that i could make myself to get some vitamins etc.. her solution was to bring me a milk shake -_- so we'll see if she's got her brain with her this time :ybatty:
> 
> I hope to make some progress with the pain soon. My thoughts lately have been that when I get the Crohns more stable, if the joint pain settles it will show the doctors that it is partly Crohn's related and therefore should be treated differently to the fibro (which they've basically said they can't do much about) .


I would look into getting a different nutritionist - ask your GI doctor.  Mine is a real sweetheart and well-versed in Crohn's.  Also, start a food diary - everything you eat and any gut or anything else reactions - it really helps them to help you.  I had a twit when I was in hospital and I very carefully made sure this one wasn't her.  She was insulting and had a one track mind that focused on how awful my diet was, which it wasn't.  Needed fixing, but I wasn't doomed or a horrible person, which is how she made me feel.  Best of luck and let us know how it all works out.  marlena.


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## valleysangel92

Hi, thankyou for your response... It's not so much that the dietitians I've seen (and I've seen a few different ones) don't know how to handle crohns, it's that they keep saying the appointment is supposed to be a coeliac review and then won't talk about the crohns, so I ask them for another appointment for the crohns and if I get one they still say it's a coeliac appointment (I suspect because the clinic at the hospital is mainly for coeliac patients and therefore they don't realise if you're there for something else) 

I luckily have an appointment with my IBD nurse two days after my dietetics appointment so if it is useless I can tell her and she'll arrange a different one. I've  kept a food diary before, and have a pretty good understanding of what affects me and how, but because a lot of what affects me is veg and fruit my diet is seriously lacking in nutrients. Most doctors won't prescribe me supplements without consulting the dietitians and endocrinologist because of my calcium issues. (My endocrinologist is really not good, and is the only one in the hospital.) 

Thanks again, I will definitely keep you all updated


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## valleysangel92

I saw my dietitian yesterday. It was actually pretty helpful, she's going to be sending me some recipes to make my own high calorie smoothies. She wants to try this option first so that I get control over how much milk etc I use because of my high calcium. If I do this and my weight is still dropping then we will either use shakes like complan which are a powder you mix with mild or we will consider some ensure or fortisip. She is also going to write to my GP regarding a possible multivitamin and will follow up with me in a few months. 


I see my IBD nurse tomorrow. I'll be asking her what we are going to do if my white cell count has dropped again or if we can't get me above the 25 mg of the 6mp. As far as I know, my options are MTX, remicade or humira, but I'm not 100% sure that I would actually qualify for funding for biologics. I would prefer to use remi or humira as they seem like a better option for my plans for the next few years, it's very possible that in 3-4 years I'll be wanting to think about having children and would prefer not to have to mess about with medications before I can. If I had MTX I would have to stop it 6 months before I started to try and concive etc. Plus the higher risks to the liver and higher percentage of immuno compromise (a problem I've had with 6 mp) is a concern. I will let you all know what she has to say.


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## Marlena

I'm glad you had a better experience this time and hope things go better for you , especially in the area of conception and balancing all you have to balance.  M


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## Lady Organic

a way to help the low white blood count while on purinethol could be ''Split Dose'', meaning taking the medication divided in 2 pieces twice a day instead of full dose once a day. I found the article and I suggested this strategy to my GI who knew and approuved. I am currently doing it at this time, hoping I wont be in leukopenia this round. 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3208360/


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## valleysangel92

Thankyou, I'll ask about it, I'm getting this with just 25 mg though so would have to split it into 12.5, so not sure how that would work?  But it's something I'll bring up with my nurse. I tend to take mine at night because I get nausea but at such a low dose it would probably be fine to have it earlier. To be honest though I don't know how many more times I can do this whole thing, I keep flaring even on 25 mg and have ended up back on steroids (budesonide). It's worth mentioning though. Thankyou


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## Cross-stitch gal

Let me know how the smoothies go!!! :chef: I too am always trying to gain some weight, but have a horrible time.  However, I suppose the high calorie might not be the best for me (and might go right through).  

I still hope something will finally start working after all this and am routing for ya.  :dusty: Lots of hugs to you...  :hug:


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## Carrie

I hope the smoothie recipes work for you, too! If you do have to go down the Ensure/Fortisip route, definitely ask for Fortisip. It's much more palatable than Ensure; I'd even dare say it was tasty (especially the tropical flavor).


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## valleysangel92

I will be experimenting with the smoothie recipes and if they are any good I'll share some here and on my blog. I think you could fiddle about a bit to make them lower calorie if you needed to cross-stitch. 

My appointment today went okay, we did some more bloods and if my white cells are low again then we are going to be looking at alternatives. If that does happen then my IBD nurse will be contacting my consultant to see what he thinks is the best thing for me. 

My nurse is going to be in and out a lot over the next few weeks so I have an appointment for march to see her and we will talk about my options and what the consultant thinks and make a decision. Hopefully the budesonide will keep me ticking over until I go back,  so far it's made a good difference so I'm hopeful it will keep working.


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## Cross-stitch gal

valleysangel92 said:


> I will be experimenting with the smoothie recipes and if they are any good I'll share some here and on my blog. I think you could fiddle about a bit to make them lower calorie if you needed to cross-stitch.
> 
> My appointment today went okay, we did some more bloods and if my white cells are low again then we are going to be looking at alternatives. If that does happen then my IBD nurse will be contacting my consultant to see what he thinks is the best thing for me.
> 
> My nurse is going to be in and out a lot over the next few weeks so I have an appointment for march to see her and we will talk about my options and what the consultant thinks and make a decision. Hopefully the budesonide will keep me ticking over until I go back,  so far it's made a good difference so I'm hopeful it will keep working.


Fingers crossed it'll keep making a difference!


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## valleysangel92

Well, I got an email from my IBD nurse this morning as promised. My white blood cells are now down to 2.9, so I've been told we're stopping them. She is going to have a chat with my consultant and they will decide what the next step should be. I'm staying on 9mg of budesonide for the next week or so and then I will drop to 6mg and stay at that level until I am next seen in clinic. 

I have mixed feelings about all this, I'm hugely relived that all the on/off stuff can stop, but the next step could be MTX or biologics. I think if it was my choice then I would favor the biologics but we will wait and see what I'm offered. Whatever they say, I am hopeful that this can be the start of a new chapter. 

On a side note, I think I'm starting to get a cold again, I've had a sore and scratchy throat for the past 2 days. Hopefully it will stay at that and not get any worse, I have a lot of stuff planned in the next few weeks and am determined to enjoy it.


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## valleysangel92

Tomorrow is the day I see my IBD nurse to see what she and my consultant have come up with as my options. 

I'm hoping that they will allow me to try biologics, but I know it might be out of their hands due to funding. 

On a positive note, I have a job interview on Thursday, for an apprenticeship in a nursery that would lead to child care qualifications.  It's a job I would really love to get, the nursery looks really nice and seems to provide excellent child care. Just as a curve ball though I've completely lost my voice. I've had a cold since last week and thought it was shifting.. But apparently not. Damn you immune system.


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## Cross-stitch gal

Good luck on both!!!  Hopefully you'll get some results soon!  Fingers crossed!!!!!!!!!!!!!


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## Marlena

Oh, I hope it all goes well for you!  Prayers and all that, M


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## Lady Organic

In Canada, everyone can have access to Biologics, even people who have not very great insurance plans. (insurances are either public or private, but everyone has one). My GI explained to me that Pharma cies that sell the biologics have ''compassionnate plans'' and that they cover whatever the personal insurance of the patient doesnt cover. So absolutely every patient who needs a Biologics will be able to get it here. It doesnt work the same in the UK?


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## valleysangel92

Thankyou for all the support 

Lady Organic - We don't really have health insurance in the UK. Some people who earn a lot will pay for private insurance, but the majority use the NHS. This is part funded by national insurance, which is taken off wages if you earn a certain amount, and also part funds our education, fire, police and legal aid systems. Everyone, even people who have never worked, gets to use the NHS and everyone gets the same level of care. 
Being on a biologic will cost a patient nothing, even in areas where there are prescription charges, as any medication administered through the hospital or as an injection is exempt from charge. Unfortunately this means that funding is very tight, so there are strict rules on the more expensive medications.  The NHS is split into health boards, each of which is responsible for deciding  how money is spent in the hospitals/GP services in that geographic area and making sure that things like anti-biotics are not over prescribed and biologics. As well as managing the budget, a big part of their role is insuring patient safety.  

If a patient with Crohn's is severely ill, they will get access pretty easily, but its a little more complex if you're in the middle like me. For some health boards, my condition is severe enough, for others its not. Some health boards prefer patients to have tried every other available treatment before biologics, this is partly due to funding concerns, but also due to concerns about side effects long term. 

Due to that, it may be that my health board requests that I try MTX before they will release the funding for biologics. The fact that I had bone marrow suppression on 6MP and I have already had one bowel resection ( which, on all the treatment scales I've seen, puts me firmly in the 'severe' section)should be enough to get me around that if the research I've done is correct but it depends on the funding panels point of view. It is clear I cannot be left without maintenance, as each time I wean off steroids I relapse, so that should also work in my favour. 

I think the other thing they have tried to consider until now is that Im a young women who will want children in the next 5-10 years, so a long term treatment thats safe for conception would of been better, but we've run out of those, so that's something we'll cross when we get to it.


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## valleysangel92

Soo.. Not exactly the result I was hoping for.

My consultant has told my nurse that he wants me to try 12.5 mg of 6mp. This is half what I was on last time. 25 mg did nothing for my symptoms and killed my blood cells. So even *IF* 12.5 is low enough not to damage my blood, I really don't think it's going to be enough to stop the crohns. 

I have to wait and see what today's bloods say, if they are ok then I have to start the 6mp, if not then I have to leave it. 

If the lower dose makes my white cells drop,  or, if it doesn't allow me to come off steroids then I will be looking at biologics. 

I am a bit frustrated that I have to go back on the 6 mp, it's caused me nothing but trouble and I can't help thinking it's just going to do the same thing again. I'm trying to think positive and hope it will work, but I can't help feel the chances of that are very low. 

I have to stay on the budesonide at 6 mg until my next appointment which will be in 4 weeks time. 

With me wanting to start working, I really can't afford to nose dive again. I'm really hoping that if it isn't working out when I go back, they will just move on, and I will be able to get on with things. I'm just concerned that if I stay as I am (fairly stable, some bad days but also good days) and they bring me off the steroids, things will go down hill (as that's what has happened every time recently, even on 25 mg of 6mp). 

Part of me almost hopes that the bloods come back low tomorrow so we can just move on.


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## Marlena

I have appt with my gastro girl tomorrow.  When I got down to 10 mg of steroids, back came the poops - not as bad as before, but stilll.  Also, much to my unhappiness, it is clear that milk and perhaps other dairy is a problem, along with chili and perhaps curry, of course, the latter is a huge fav.  I also have an eye problem and a minor wound that won't heal.  IKNOW this is small potatoes compared to you guys, but i am a new diagnosis and I'm 70 and today it all just seems so unfair., because i've been healthy.  the eye freaks me out because I spent months twice with my nose on my knees, healing from a retinal detachment.  Okay, enough.  Valley, you're in my thought and prayer.s m


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## valleysangel92

I understand how you feel. I've been on a merry go round since diagnosis with steroids. I've spent since June last year trying to get off them and haven't lasted more than a few weeks at a time and I keep ending up back at square one relapsing. So I really do understand how you feel.


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## valleysangel92

Just a little update here for those who have missed my other post.

I just got home this afternoon after being in hospital for just over a week. I went to my GP as I was in horrible pain and my IBD nurse wasn't there. They did a quick check over and sent me off to the hospital. 

I had a day of bowel rest with just clear fluids and IVs and then just ate small bits. 

I did a pill cam on Tuesday, was pretty easy except that the prep I had to do on Monday made me violently sick and dehydrate, so ended up on fluids again. 

I've been put on a modulen diet (although I don't even have enough to last a week, so I'll have to try and get a rapid appointment at the GP and hope they'll give me a prescription and hope the pharmacy orders it fast. 

I have an appointment with my IBD nurse on the 8 th of April when I will hopefully get my pill cam results. Waiting is always the worst bit but I am so glad to be home with my own bed, hot tea and coffee (it's always luke warm in hospital)  and lots of IBD and coeliac safe food that I can have while sorting out all the modulen I need and then as a supplement alongside.


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## Lady Organic

you could ask your pharmacy to order the Modulen right now even if your prescription is not ready to win a day or 2. they'll trust you you'll come pick it up along with the prescription. 
You are not curious to try a 100% EEN trial? Or have you tried it before?


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## valleysangel92

I can't ask the pharmacy without a written prescription, it just doesn't work like that here unfortunately. 

To be honest, I think 100% EEN is great if you can manage it, but that's yet to be discovered. It is all dependent on how much of the modulen I can manage to get down a day, if I can't get to the full amount then I will need to supplement with food or I will keep loosing weight. As it is, the maximum I've been written up is 1500 cals a day, which is only just enough to maintain weight and really I need to put it on. If I cope well with the modulen, I will have little to no 'normal' food, so I will try it as 100% EEN. But my consultant wants me to have room to tweak it if I'm struggling with it or its casing me problems.


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## Lady Organic

Ive discover the joy of gaining weight since a few weeks with almond butter. Really easy to have large quantity and easy to digest it as well for me. 
good luck with Modulen and treatment.


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## Muppetgirl

Hey up Valleys...how are you doing now? I'm sorry you have been so unwell but you did well to get some decent hospital treatment...hopefully that'll be the silver lining to your cloud :thumleft:


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## valleysangel92

Thankyou, I'm still in pain, I managed to get some more pain meds off one of my GPs yesterday though so that should help. 

I also tried to sort my modulen out.. The hospital only gave me 3 and a half tins on discharge, and I need nearly a full tin every day.. The GP had never even heard of modulen, but because I had my discharge things with me it wasn't a problem. The only issue is that he only prescribed 400 grams... Which is one tin (In fairness to him, it says one tin on the letter the hospital gave with my meds, but that was because it's all the pharmacy had ) and that's also how he's set the repeat up. The pharmacy didn't have any modulen in stock either. So I'm still stuck with only a small amount and I've not actually been able to start the diet because I'd run out before I'd get more -_- and of course not starting the diet means I've basically not made any progress since discharge. 

My dietitian was supposed to call on Monday and she didnt, she was also supposed to fax my doctors with the correct prescribing amounts and after yesterday's confusion I can tell she didn't do that either. 

Luckily, I have an appointment with my IBD on Wednesday who is far more reliable. Hopefully she will sort out a proper prescription and be able to instruct my GP on prescribing it correctly.


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## Cross-stitch gal

Oh boy.  What a mess!!!  I hope they'll get it straightened out before next week.   Lots of hugs to you girl!!!!


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## Muppetgirl

Doh! That must be very frustrating indeed. I hope you are able to get through the weekend and get something down? Crossing my fingers it gets organised next week.


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## valleysangel92

Thankyou both!  

Thankfully I am managing to get some food down. As I eat I start to feel a pressure like feeling which is my warning not to eat much more. I'm trying to stick to softer/low residue foods but unfortunately it's currently a case of any food hurts  .


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## UnXmas

The other day my GP messed up one of my repeat prescriptions, and I ran out. I rang the GP, and the receptionist said that medications can be provided by chemists/pharmacies without a doctor's signature in some  cases. She rang my chemist to see if they'd accept my unsigned prescription, called me back and told me they would, and the chemist delivered it to my house as usual the next day. I don't know what cases would qualify for this - but my prescription was for an addictive, prescription-only painkiller, and apparently that's fine. It might have helped that my chemist had regularly provided it to me already. I know there are similar ways round prescription problems for "emergency medications" - when someone could die or become very ill without their medication. Ring your GP or chemist after the Bank Holiday, they should have ways around these things, especially if you have anything on your medical record that shows your doctor has recommended you have the medication, or a previous prescription..


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## valleysangel92

I will be seeing my IBD nurse on Wednesday anyway, so it would only really be one day difference, and she's more likely to give me the amount I need. I know at my doctors if an item is on repeat or its something you've had a couple of times before then my doctors will reissue a script without you needing to actually see the doctor, but they will only give you the same amount as before, so doing that would probably only get me one more tin. Emergency supplies are generally just a small amount of the medication to get you through until you either see a doctor or your repeat goes through. I really need a proper bulk prescription, something like 12 tins a time otherwise I'll be down there every few days either putting in a script or collecting the powder. Unfortunately things like modulen are so specialist they won't just give it out without proper instructions.


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## Cross-stitch gal

Good luck and I hope you can get the correct amount to get you through till wednesday... :hug:


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## valleysangel92

It's the big day tomorrow, not only  should I be getting my modulen sorted out but hopefully I will also be getting my pill cam results. I'm not really sure what to expect,  I'm sorta hoping they can see some inflammation, since that's the only sure way things will progress. 

The doctor I was under in hospital kept saying we have no proof I flared last year (Uhm, I have fecal cal and blood results that show inflammation and nearly a stone of weight loss, more than enough to give my regular consultant and my IBD nurse grounds to treat me) . His argument is that the colonoscopy I had last year was clear, so he thinks the other tests mean nothing, even though they were done months apart. The doc I was under in hospital kept questioning why I was on immunosuppressants (because I couldn't get off steroids without feeling rubbish and my inflammation markers going up. Not good enough for him though)  and why we were now considering biologics (bone marrow suppression on immunosuppressants) . 

To be honest, he made me feel like I had no right being there. The saving grace was that he'd been in contact with my regular consultant who had got him to at least try the pill cam. If it hasn't shown anything then I'm not sure what they'll do next,  and I can see the doc I had in hospital (who is my old consultant and never showed a spec of interest when I was actually his patient)  trying to interfere further. I'm just thankful I am seeing my regular team again now,  and at least know that they will do everything they can. 

It aggravates me that some doctors just ignore how the patient is actually feeling, and will undermine current treatment, leaving other doctors who have been bending over backwards for the patient to pick the pieces back up. If my regular consultant hadn't of been involved, and if the hospital doc didn't have a decent registra working with him then things could of been set way back. 

At least if this shows where the inflammation is (that's been showing in bloods)  then I will have conclusive proof if I have to be admitted again. My only concern is that if it comes back negative, then any consultant other than my regular one is going to try and say I didn't even flare last year, and I'll be back in the position of having to prove I need help. 

I'm not even sure this post makes much sense to anyone else. But basically, if the results show us where my inflammation is,  it's going to make things a heck of a lot easier. If they don't, there might be a lot of barriers.


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## 24601

Your post makes perfect sense to me! What doesn't entirely make sense is the "reasoning" of some of your doctors. I mean sure it's always hard to know exactly what's going on inside unless you are scoping at that minute or have pill cam results from yesterday but your inflammatory markers and your symptoms do not mean nothing!!!

Some doctors be crazy :eek2:


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## valleysangel92

24601 said:


> Your post makes perfect sense to me! What doesn't entirely make sense is the "reasoning" of some of your doctors. I mean sure it's always hard to know exactly what's going on inside unless you are scoping at that minute or have pill cam results from yesterday but your inflammatory markers and your symptoms do not mean nothing!!!
> 
> Some doctors be crazy :eek2:


That's one of the main reasons I switched consultants. I was just unfortunate that the doctor on duty when I was admitted was my former consultant -_-. It's made me very glad I asked to change during my admission last year (when I first met my current consultant, who is far better! )  .


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## Cross-stitch gal

Yup, I've been there too.  Fingers crossed for some good results for ya tomorrow. :dusty: No matter what, we're hoping for some plan to go on. :hug:


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## valleysangel92

I just got home from the hospital, my nurse hadn't realised until this morning that I was in.. Seems like no one thought to tell her -_-. 

They don't have my pill cam results yet, apparently the doctor that ordered it needs to do a report on it and he's been away etc with easter and the bank holidays.. So my nurse is gonna chase that up with an email. 

However, my fecal CP results are there. In the UK 50 or below is normal, for someone with IBD they usually accept up to about 100. Mine is 231, so while not up in the 1000s  like some people's, it's raised enough to show that there is at least simmering inflammation. While in comparison to other patients this isn't that high it's a big raise for me as it's not that common for mine to be high (it was even normal in the lead up to surgery despite clear active inflammation) . So she's convinced enough that I have inflammation and that it explains my symptoms. 

I was due to reduce my steroids again after today, which we've decided not to do, so I'm remaining on 6 mg. My white blood cells are only just in the normal range, so we won't be upping my 6mp. 

I was slightly anaemic in hospital, so we've rechecked that and some other vitamins in with my normal blood tests. 

My modulen is finally sorted!  I walked out of the nurses office with a script for a months worth. She's done it as 1 tin a day for a month, so I'll actually end up with a few more tins than I need (I need about 3/4s of a tin a day) so if there's any issues with the next lot I won't run out. The script went into the pharmacy today and they say it should be delivered to them by 11 am tomorrow. 

I'll get the blood results by email as normal and see my nurse again in 3 weeks. If she hears anything about my pill cam results before then she'll let me know.


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## 24601

I just wanted to say that I think you are quite right in interpreting your fecal calprotectin level as being high for you - and that it's your relative levels that are most important rather than a comparison with other people's highs.

It's very easy when you're someone who doesn't have wildly high inflammatory markers in bloods or fecal calpro to think/hope/wish/be told that that means the inflammation isn't that bad. But that's simply how some of our bodies respond and it's all too easy for us and our doctors to not be as concerned or act accordingly by escalating treatment when those inflammatory markers aren't as raised in comparison to some other Crohn's patients. But it's all relative and that's so important for everyone to understand. You don't need a fecal calpro in the 1000s to need treatment. And even simmering inflammation can do a lot of damage (something else we and our doctors mustn't ever forget) so I'm really glad that you've got your Modulen supplies - getting on that inflammation and trying as best we can to reduce it quickly is our goal and it's good that your IBD team have got themselves sorted 

Hope the Modulen drinking goes well and that inflammation gets under control. Also still crossing my fingers for you to get useful pill cam results!


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## valleysangel92

Thankyou,  I'm lucky to now have a like minded IBD nurse and consultant who agrees that this is more than enough to show somethings going on and it needs to be dealt with (no matter what that other consultant says) . 

My bloods are almost always normal, they are the very last thing to show inflammation, and I'm always quick to tell new doctors that. Again, thankfully my IBD nurse is of the same mind that normal bloods don't mean there isn't a flare, and she will always trust when I say I don't feel well. I think switching my IBD team last year was the best thing I could have done for my health and this has just proved that. If I'd stayed under my old team (the one I ended up stuck with in hospital)  I'd probably still be waiting for an appointment, and they'd probably tell me that the fecal cal isn't enough (that's what he told me in hospital when I said it was high last year and that was why I'd started treatment.. Maybe he's just sore that I chose my current consultant over him. ) . The team I see now is so much more attentive and don't palm me off with excuses,  plus they get things done (eg the modulen, something the hospital team should have sorted before I was discharged). 

Thankyou! I'm hopeful that they will be able to locate the inflammation now and give a clearer picture of what we're dealing with.


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## 24601

I think you made a really good choice to move consultants...and I know it's not an easy decision to make to deal with the upheaval when you're ill but hearing stories like yours, where you've found a much more responsive (and IMO more sensible) IBD team is really encouraging and illustrates just how important it is and the big difference it makes 

I definitely think it's important to have doctors who look at your individual case of Crohn's and how it presents for you, rather than seeing you as a generic Crohn's patient (not that I really think there is such a thing but it seems some doctors aren't aware of that!)


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## valleysangel92

I actually met my new consultant during an admission last year, and he instantly was just so much better, he didn't make excuses, he didn't make me wait days to be seen and didn't make me wait for treatment and acknowledged the pain I had. I asked him there and then if I could stay under his care and he said that if I was happy to travel to a different hospital (which is actually closer to where I live)  for his clinics then he had no problem taking me on. It is hard going from what you know, but my experience has made me a big advocate for seeking a second opinion or asking another consultant to take you on if the care you're getting isn't good enough. 

That's definitely true. Too many doctors see an illness instead of a person these days, and that just leads to chaos. 

I will be sure to let you all know how I'm getting on with the modulen etc, I plan to start it properly over the weekend while I'm at home and can take my time getting used to it before I have to worry about going out with it.


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## valleysangel92

I had an email from my IBD nurse this morning,  my white blood cells are at 4.6, so still very close to the borderline (under 4 is considered low in the UK). So theres no sign of being able to up my 6mp, and without the pill cam there isn't a huge amount more they can do.


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## Cross-stitch gal

Boy that stinks!!! :stinks:  I forget if you'd done the pill cam recently.  If so, hopefully that'll get some results for you....


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## valleysangel92

I did the pill cam while in hospital, about 2 and a half weeks ago. The pictures need to be reviewed then sent to the consultant who ordered them (who isn't my regular consultant)  who then needs to do a report on them before my nurse can access it. Hopefully that'll show clear inflammation because it was done a day after the sample was submitted for the fecal cal, so this time no huge gap between tests. 

I love the nhs, but all the red tape is a pain in the butt (literally)


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## Muppetgirl

Tis crappy when your expectations are raised by the feeling you are finally getting somewhere only to find yourself stuck in a bit of a rut again. On the upside though the results do exist - albeit currently in a closed space - and they will reach you soon. Given your recent admission, you need something to be put forward. Do you have an upcoming appointment with your consultant rather than the nurse?


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## Catherine

Interesting they think 4.6 is low.  I wonder what they are saying to say when  my daughter has her first blood test in England.  Her GI in Australia is happy with between 3.8 and 4.5.


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## valleysangel92

It was a bit disappointing, but at least they could tell me it was a flare.. At the moment I just have appointments with my nurse, and I really don't mind that, she's in frequent contact with my consultant who gives her instructions on the next step with treatments or tests and I know he frequently looks over my notes and results  so he's always in the loop, if there comes a time where I want to see him I just have to ask and they'll sort it, but I'd have  a bigger gap between appointments etc. 

Catherine - I think it's because I have so much history of my bloods dropping with 6mp,  this is the 4th time we've tried it now, and they are being super cautious. I think their thinking is that if it's on the brink  now then upping the dose is going to send it under. They do have patients who are on the full dose and their bloods sit at 4.0 and they are ok with that, but I'm on the very lowest dose they can give and it's already affecting me (before I restarted the 6mp my white cell count was about 7.5) . Plus I pick up colds like they're a fashion accessory -_-.


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## Catherine

Thanks, my daughter is at the end of the scale she pretty much at the maximum dose of imuran.


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## valleysangel92

So, I've been wondering why my modulen has been as thin as water and not been filling me up in the slightest, as in its not been touching the sides. I cross checked the hand written instructions with the instructions on the booklet that comes with the modulen, and it turns out the written instructions had me using about a third more water than I was supposed to. Thus resulting in what is basically flavoured water and not anything like what they were giving me in the hospital (which was much thicker and actually filled me up) . 
These hand written instructions were from my dietitian, so I did a bit more research and I'm pretty sure that she's actually done it the way it should be for a young child not for an adult -_-. I swear she thinks I'm 16 not 22. I weighed myself yesterday and I've actually lost weight since I started it. 

Tonight I'm going to make it up as per the instructions in the booklet (sticking to the instructions for the same amount of calories). Then I'll be able to see how full I am when it's not so watery (I make it up the night before and keep it in the fridge, it's a lot better than drinking it straight after its made). 

I've managed to find a few flavours that are actually not too bad. Mixing it with coffee and chocolate flavoured milkshake powders works really well, and warming the coffee flavoured one in a pan makes it so much more satisfying. I've also been mixing it with a milkshake flavouring we have hear called crusha, which is a liquid flavouring to add to milk etc. That one works ok,  takes a fair bit to get the flavour to come through. 

It's all been a bit trial and error, but I know the consultants /my IBD nurse said to play around with it and how I mix it etc (sticking to the same amount of calories). 

In other news, I've been looking for work as you might know, and my local job centre have sent me to a support center for unemployed people with long term health conditions. They've also put restrictions on my file so that I can't be put into any jobs that are over 25 hours a week, and I can't be made to take a manual or stressful job. This is super helpful and takes pressure off. 

I had my first session at the centre today and it was really good  I'm looking into advocacy and /or mentoring work which is a less physical way of helping people, and one of the staff at the center thinks they can get me an interview with the UKs youth advocacy service, which is an amazing opportunity. 

Crohns can knock me down, but it won't keep me there, time to kick butt!


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## 24601

Oh that extra water would make a big difference! Silly dietician  I know that I find a big difference between standard and made up with 1.25 the calories of standard - not saying you should go with that but for me it was my sweet spot for sufficient calorie intake v. volume plus I preferred the taste of it / mouthfeel of it being slightly thicker and milkier. I'm weird though because I liked it best unflavoured and at room temperature! I'm glad that you're having some success with finding flavours you can drink. It's definitely all about seeing what you prefer!

Glad the session went well and great news about the possible advocacy/mentoring work!!! :dusty:


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## Cross-stitch gal

Hopefully things go better with the thicker shakes for you.  Sounds like you're still going through a lot over there.  But, good luck in finding some employment!!!!  Fingers crossed that something will come soon for you!


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## valleysangel92

24061 - The formula she had me using literally made it 1 cal per ml. She had it as 36 scoops in 1275ml which in total would make 1500 ml. The way the book does it works out about 1.25 cal per ml, using 36 scoops but in 750 ml making a total of 1000ml. Which seems more like what I've seen other people use. Being more milky definitely sounds better, that's why I like it warmed. It tastes like slightly flavoured warm milk  . My dietitian means well but often seems to jump to quick decisions or just try and guess things rather than looking at things properly. 

Thankyou,  it's something I've only recently realised I can do with my current qualifications, but it's the perfect balance between wanting to help children/ young people but not being overly physical. 

Cross- stich gal - thankyou,  I sure hope so. It's been a long few weeks and my body's so tired with everything. Thankyou!  It's so good having a positive aim


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## Marlena

I am so glad things are looking better for you all around, you've had a tough row to hoe.  I'll pray it continues.  So good to hear you ready to kick butt.


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## Cross-stitch gal

Hang in there valley!!!  Totally understandable that you're tired.  I'm sure we'd all be just as tired as you are if we'd had to have gone through everything you've delt with.  Sending big hugs to you!!!!!!!!!!


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## Muppetgirl

How are you getting on? Any word on the pill cam results? I hope that you are able to get more calories now and that you begin to see an improvement. I appreciate you sharing your experiences on experimenting with your formula.


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## valleysangel92

Hi everyone, sorry for the lack of updates. My home Internets been down for over a week now. I'm at the hospital for my check up now so I'm using their wifi to check in.

I'm still fiddling about with the modulen. I was finding the more concentrated mix was making me feel really sick so I've been trying about halfway between the booklets measurement and the dietitians. This seems to be working better but it's still really sickly which has been very harsh on my stomach (nausea)  and I've noticed a big increase in my acid reflux since I've been on it. I am however noticing that there is a reduction on my abdominal pain which is a lovely change.

 I've had no contact from my dietitian which is frankly annoying but not surprising. I was supposed to see her a month after discharge and it's been 6 weeks on Friday but there's no sign of anything.

I'm seeing my IBD nurse today and I'm hoping she'll be able go gell me something about my pill cam since its now been over six weeks since I had it done. I won't be overly impressed if the consultant still hasn't done a report on it. 

In other news,  I've been encouraged by several different people to apply for personal independence payment (Pip) which is like out version of your disability payments. 

It isn't a statement that you can't work, it just means you have limitations. So I'll still be allowed to work, but it should mean that I can comfortably work reduced hours (say about 20 hours a week)  without having to worry about earnings. It could also entitle me to certain adaptations. 

I finally worked up the courage to pick up the phone and order the form which I received last week. My nurse has agreed to be put down as a contact for it so they can get information about my crohns and I have a good relationship with my usual GP so I've put her down for the fibromyalgia. Incidentally the fibromyalgia has been playing up like wild fire the last few days. If it's not one it's the other.


----------



## UnXmas

I get the full amount of both parts of PIP (mobility and daily living (personal care)). Let me know if you have any questions about it. Be prepared for them to take a long time assessing you. It's not supposed to make up for lost earnings (it doesn't depend on your earnings or savings, etc.) it's to pay for help you need because of your medical problems, such as people to care for you.


----------



## Cross-stitch gal

I'm glad that something at least seems to be working for you!!!  Especially that the pain seems to be going down!!!!  Now, hopefully everything will start falling into place.  Good luck at the doctors today!!!


----------



## valleysangel92

My internet is finally fixed! 

The appointment went well. I am still on the border of anemia, my iron is OK but my feritin is low and my Hb is just below normal. My nurse says if it was up to her, she'd schedule a one off iron infusion to get it back up since its inevitably going to drop, but unfortunately the lab won't authorize it at this level.

I had some bloods done today, if they are stable then we will try to raise my 6mp. If my white cell count is still at the lower end of normal then we aren't trying it. 

There is still no report from the pill cam. Apparently my GP should have got it and contacted me, but as ever they didnt. So my nurse is going to contact the endoscopy unit directly and then let me know what happens from there. She has to go to confrences etc the next couple of weeks so it might be that we discuss it when I see her again in free weeks. She is going to talk to my consultant when she has the result to discuss my case. 

I have a script for a different PPI med to try instead of the omeprazole to see if it improves my symptoms, if it doesnt make a difference then I'll switch back but its worth a shot. I also have a script for a multivitamin that my GP was instructed to put me on 2 months ago but never told me about (the dietitian wrote to them). 

If things don't begin to improve and/or things deteriorate when we lower the steroids and/or stop the modulen then she will approach my consultant about getting my case discussed at the next MDT meeting where they will decide if I can be put forward for biologics. She said they use Humira a lot, so I think that might be the more likely one. To get to this point is a massive step and I'm glad I have a plan in place.


----------



## valleysangel92

Unxmas, Thankyou, theres a local company that's going to help me fill my form in and make sure I know how to answer things at the assessment etc but if I think of anything then I will let you know. I'm aware its not means tested, I think I worded it a bit strange. I'm not well enough to work full time, but with all the costs of hospital trips and the cost of bus fare to pick up prescriptions and all of those things, I wouldn't manage on a part time wage. I've been told by a number of people that I should qualify for the daily living aspect as I can struggle dressing ( my boyfriend has found me half dressed in a heap on my bed before now), find it difficult to peel and chop veg etc, have a hard time gripping and a difficult time concentrating. I don't know how I'd do on the mobility side as I do get around OK most of the time, but I use crutches when my fibro is bad and there are a lot of times where I find the walk from the bus station to the hospital is just too much, so PIP would help in those cases since I'd be able to afford a taxi, or maybe even be able to learn to drive which would greatly increase my mobility. 

All of these things would then make it possible for me to work, and lower the pressure of needing to earn to fund hospital trips etc.


----------



## UnXmas

Ok, thanks for explaining. It sounds like you should qualify for PIP, because you've pretty much described just the sorts of things it's supposed to cover. Good luck!


----------



## Marlena

Valley, I'm glad things are beginning to look up.  Hang in there and don't lose hope!


----------



## valleysangel92

Thanks both, 

Why can some medical professionals just not read notes? I picked up my meds to day, including the supplement that my dietitian asked for. Theres a big warning on the back saying "DO NOT TAKE IF YOU SUFFER FROM HYPERCALCAEMIA". I was diagnosed with hypercalcaemia when I was 15, it's been stable lately, but I'm supposed to be super careful as it spikes without warning and it can become very dangerous. 

I don't blame my IBD nurse at all, she just followed the request, she doesn't normally prescribe supplements so wouldn't of known. The dietitian however really should have known better than that. Urgh. 

I've emailed my nurse to let her know and ask what she'd like me to do from here.


----------



## valleysangel92

I got a response already, my last calcium check was high so the supplements are a no go. 

My nurse has gone to endoscopy to try and get my report but had no luck, it's not been done yet, she was told it would be the next 2- 3 weeks. 

Also, my white blood cells are firmly back in my boots. They're at 3.2, I'm already on the lowest possible dose (12.5 mg), so there's no room to go down. It seems like it could be the final straw and it could now be goodbye 6mp for good.


----------



## valleysangel92

I've just had another Email from my IBD nurse, she has had contact from my consultant and he wants me off the 6MP. He has suggested that I might need another scan (haven't had one since June 2014) but will talk to me during my next appointment with Allyson. 

They are going to put my name forward to the MDT meeting to discuss where we go from here. They usually have these meetings every month but for some reason there isn't one this month (May) so the next will be in June. If the MDT meeting agrees then the next step is biologics. If they don't then I'm not really sure where we can go.


----------



## Cross-stitch gal

Sorry they're taking you off the meds.  Hopefully that meeting will be a good one and will get some sort of plan on board.  Hugs for you till then...  :hug:


----------



## 24601

Frustrating that you have to wait until next month's meeting but overall (and with the trouble you've had with immunomodulators and this roadblock you've encountered to biologics) I think this sounds like progress! Yay for some progress!


----------



## Marlena

Boo hiss for having to wait, one of my pet peeves, but I guess things are progressing - sending support your way!


----------



## valleysangel92

They keep making the IBD team go to conferences in England, so that's possibly why there isn't a meeting this month. My IBD nurse wasn't too sure. 

I suppose one positive of it being next month is that my pill cam results will be back in time and they should have all the info they need apart from maybe one scan. 

I'm starting to slowly wean down the modulen,  I'm slowly decreasing it and slowly upping my food intake. It seems to be going well at the moment, I'm doing it very slowly and keeping a record of what I'm eating plus the amount and how well (or otherwise)  I feel after. The hope is that I'll be fully off it by the end of May. 


In other news. I got a job!  I am now a trainee dental nurse. I start on Monday and I'll be working with a lovely team. I did a work trial there last week and they were all so friendly and welcoming. And I was chatting with one of the dentists, and he started asking about my braces, and said I looked like a good candidate for surgery. I said that I had been offered and it's been something we've planned for but that they may not go ahead because of underlying health issues potentially making it too risky. So he asked what they were, so I said crohns, and it turns out his wife has crohns!  So when the management called me later in the week to check a few things they asked me about how the control was at the moment and said they were well aware it won't be controlled forever, and they honestly didn't seem at all put off. So I'll be working with people who understand


----------



## 24601

That's so wonderful! Congrats on the new job!


----------



## Marlena

Wow, such good news about your job, I'm so happy for you.


----------



## Muppetgirl

:congratualtions:


----------



## valleysangel92

Wow that was a long week. I got thrown in straight at the deep end and got left on my own to do stuff a lot, which shows they trust me as some of the equipment is very easy to break and also very expensive. Things seemed to go well though  . Hopefully there'll be people there to show me stuff more now as they were short staffed last week so hopefully this week I'll be watching the qualified nurses and learning from them more rather than trying to figure stuff out myself. 

My body seems to be holding out alright. I've been having a fair amount of aching especially in my back and hips. My stomach hasn't been too bad though, there's pain there but it's not too bad. 

I'm doing well reintroducing food, I'm tolerating it much better than before the modulen.


----------



## Cross-stitch gal

Sounds like you did pretty well this week!!!  Glad you did so good on your own, but thankful you can get a little more help with what you don't know.  

Sorry about the aches and pains and the flaring.  But, also thankful to hear you're doing alright with food again!!!!  Keep up the great work and hang in there!!!!


----------



## valleysangel92

I was full on assisting hygienists and everything, even doing suction on my first day. And been working in the sterilisation room and on reception. There's loads to learn but they're a lovely team. 


Thankyou. I have my appointment with my IBD nurse on Wednesday. 

Do you have any knowledge on how crohns can affect your mouth?  I've had some nasty swelling and ulcers. My orthodontist took a look last Wednesday and gave me some spray to use to try and calm things down. It's still super sore though. I'm wondering if it's worth mentioning to my nurse / consultant on Wednesday


----------



## 24601

I'd definitely mention the swelling and ulcers! Mouth ulcers seem to be a fairly common manifestation of Crohn's but I've also read this:

"Oral CD may present with labial enlargement, oral ulcers, mucosal swelling, fissuring of the tongue, facial nerve palsy, facial swelling and erythema, mucosal tags, gingival enlargement, and cervical lymphadenopathy. Oral aphthous ulcers and pyostomatitis vegetans also may develop." Source

Hope it isn't Crohn's but better to know what you're dealing with.

Glad you had such a good first week!


----------



## Cross-stitch gal

I'm afraid I don't know.  But, it sounds like you just got some good info before I was able to answer!  Good luck on everything!!!


----------



## valleysangel92

I saw my IBD nurse today.. She doesn't want me on MTX she says she really doesn't like young people being on it. So she's going to push for me to have biologics. The next MDT meeting is on the 5 th of June and my case will be discussed there. 

If they give the go ahead then I'll be sent some forms for screening and some information on the different medications so I can try and decide something before I see her next. She says it would probably be up to me but she thinks the humira would be my better option.

I have some prescription mouth wash to settle things down. If I get on with it I'll be given a longer prescription. 

I have some more lansoprazole which has helped significantly with my reflux. 

I'm also having my steroids upped again, back to 9 mg. My stomach been giving a bit of grief the last few days and with starting work I need to kick it sooner rather than later.


----------



## Cross-stitch gal

Oh boy, here we go again!  But, at least it sounds like they've got a plan going as far as where to go now.  Good luck!   I hope this will get you so you can *finally* be comfortable!!!


----------



## valleysangel92

Hey all 

I've been away without proper internet the last week and have come home to find an email from my IBD nurse, she says that they finally have the results of the pill cam and it didn't show anything in the small bowel.

 They're still going to put me forward for the biologics anyway, since I'm clearly hypersensitive to the Aza and 6MP and they know I definitely have inflammation even if they are still playing hide and seek with it. 

My belly has been somewhat better behaved this last week with the higher dose of steroids, so at least I'm a bit more comfy while things are figured out.


----------



## valleysangel92

Not feeling so good this week. Stomachs been having a funny and my joints are swelling.. I'm starting to struggle at work because I'm so tired I can't move as quickly as I need to and pain is very distracting. My painkillers are really strong and make drowsy so I can't really take those on work days.

Being so new I don't feel I can take time off, so I'm trying to muddle through but right now I feel a bit more of a nuisance than a help.


----------



## Cross-stitch gal

I'm sorry valley.   Do they know how much pain and discomfort you are in?  I hope they're working with you with this.  Hang in there and am sending you lots of hugs.


----------



## 24601

Sending hugs and hoping they can get a new treatment started for you soon :ghug:


----------



## valleysangel92

Thanks both.. 

On Tuesday I was in with a hygienist who let me sit down when possible even though we usually have to stand in her room because of space. My mentor said we aren't really supposed to but when I explained why id been allowed she said that's ok. 

Then Wednesday my mentor said we shouldn't really be in surgery when not feeling well,  since we can't look after us and the patients, so she said if im feeling iffy to tell her or the managers..  

So today I went in and on my way my stomach really started to hurt and I felt sick,  so I had a word with the owner when she let me in (I'm usually the first to arrive apart from the owner)  and she sent me home. 

I felt so bad that I had to leave and like I was really letting them down, but I couldn't garuntee I didn't have a bug and I really needed some good painkillers. I'm hoping a few days of rest and pain meds will mean I can go back on Monday and be on form. 

My MDT meeting was today but I've not heard anything yet,  I might not hear until I see my IBD nurse on the 17 th. So it could be an anxious time until then.


----------



## valleysangel92

Well. I think I might have an idea why I suddenly feel like rubbish.

There's been a huge recall of gluten free products in the UK as they have been found to actually contain gluten. Some of which I've eaten as recently as Thursday, on Friday I had crippling pain. Coincidence?  I think not -_-.


----------



## valleysangel92

Well today is the day. I'm sat in the waiting room right now. I'm so nervous!  Not at all like me.


----------



## valleysangel92

Well. That's a curveball. I'm not having anything added. 

The MDT weren't happy to give me biologics, they say that they don't know it's crohns because they don't know where the inflammation is. This is despite all the fecal cal etc I've had showing inflammation. Plus a run of a few months last year where every blood test showed inflammation. So hey who knows. 

I've got to have more tests. Possibly a white blood cell scan or another form of endoscopy. Those could take months to even get and appointment for. 

In the meantime I have to try and manage with steroids. Im trying to come off them but if I get worse I have to raise them again. 


My IBD nurse is concerned about my weight, she doesn't think I'm getting enough nutrition so she wants some supplements, so she's speaking to the drugs department to see what they suggest.


----------



## Marlena

Enough already, my heart truly goes out to you.  You've had enough!


----------



## valleysangel92

I'm glad I'm not the only one who thinks that!  I'm terrified that I'm just going to get worse now . I'm supposed to be tapering my steroids (very slowly, by 3 mg a month) but I pretty much know that when I do I'm on a time bomb.. 

My nurse says she's not going to give up and we'll keep going until I get the answers and treatment I need. But that doesn't make it any less frustrating that I'm pretty much back to square one and that it's going to take months before we get any real progress . I'm so done with all the tests just to clear red tape. 

My own consultant couldn't be at the meeting, so apart from my surgeon who hasn't seen me in nearly 2 years it was just my nurse that knows me well. The consultant that used to look after me was there but he was never that much help, the others that were there don't know me at all. 

I'm just so done in. I'm already feeling poorly and I've only just reduced my steroids. I can't afford to get sick again.


----------



## Cross-stitch gal

Agreed.  It's too bad there isn't someone else there to talk to for you.  Is there a family member or good friend who can go in with you to help you speak up and somehow be heard?  Maybe this might help if they're not listening to you by yourself.  I remember my frustrations when I wasn't being heard...


----------



## valleysangel92

My parents are usually in work when I have appointments. I think my mum will actually be off for the summer break when I next go but to be honest she doesn't have a massive understanding of everything, I do explain and she does try but due to work etc she usually has only had second hand information. My partner doesn't work but lives 50 miles away so its hard to get him here for appointments. 

I think the most frustrating thing is that the person who I see (my nurse)  actually agrees with me. She said she understands where the consultants were coming from but even she was sat in the meeting thinking they couldn't be serious. 

I don't know where my consultant stands, but I'm pretty sure he agreed about me going on biologics or he wouldn't of put my name forward for the meeting. 

I think it's unfortunate that patients aren't able to attend the meeting or send a representative. At least if I'd been able to do that I'd of been able to directly ask the consultants who made the decision. 

I have voiced my concerns to my nurse and told her I'm worried because of what has happened before. And she said that she's not going to stop until everything's sorted out. She says she's on a mission and nothing will stop her. She says she knows there's something wrong. She's certain there's inflammation there, she's just finding it hard to show them where. She also said that it's her job to take what I say seriously and that she won't hide anything from me. So I at least do feel like she's taking me seriously and I've always felt like I can trust her. 

My concern is what happens if I get sent into hospital or something and my own team arent available then I'll have to fight to get any kind of treatment again. And that I really don't know where we go if I start to deteriorate between now and the tests.


----------



## Lady Organic

thats too bad you didnt get the biologics. you have been for a long time on steroids now and seems like it could also take a lot more time for tests and results, unless your consultant asks for a urgent request. why not going to methotrexate?


----------



## valleysangel92

Even with an urgent request it could take months, my last colonoscopy was urgent and it still took 3 months for me to get anything through. So he probably will ask for urgent but it might not make that much difference. 

My IBD nurse isn't comfortable with MTX and neither is my consultant. They've only got a handful of patients on it and really don't like giving it to young patients especially those who may want a family in a couple of years time. Aside from that there is the concern that I reacted badly to both azathioprine and 6 mp, and they don't want to take the risk of further bone marrow suppression for a med they've never wanted me on anyway.


----------



## Cross-stitch gal

I think I'm finally at a loss for ideas. :ybatty:  Wish you were closer to give some real hugs.  But, here are a couple from me anyway.  :hug: :hug:


----------



## Marlena

It's a wonder we're all not in the loony bin,  This disease, which has so many twists and turns and hidden aspects and uncommon stuff that isn't typical is enough to make us all crazy.  You've been through so much, with no clear way ahead.  I admire you for sticking to it and I too wish I could be closer to give you more support.  I think I need to go on something stronger and I am a little scared about it, but all I've been doing hasn't really helped.


----------



## valleysangel92

Hello all. 

Been ploughing on. Still in a fair amount of pain. Don't really know what to do about it. I'm on my 3 Rd period in 6 weeks and that's certainly not helping. 

Pain management has been tricky and I'm not sleeping as much as I need to. 

I take a mini pill which usually controls my periods but I don't think I'm absorbing it. So I'm getting erratic uncontrolled bleeding. My periods have always set my crohns off. 

Lost for what to do.


----------



## UnXmas

Depending on the reasons for which you're taking the pill, it may be possible to use a patch or injection instead.


----------



## valleysangel92

The mini pill was selected specifically because of the side effects of the other forms of contraception (mainly DVT as there is family history)


----------



## Cross-stitch gal

I was going to say that I took the mini pill for awhile too.  I tried the regular one before we got married, but it set my colitis to flare.  The mini pill has less estrogen and is usually taken after a pregnancy.  But, it's also taken by those of us who can't take that regular one.


----------



## Catherine

Is it possible the mini pill is causing the bleeding?


----------



## valleysangel92

I've been on the mini pill since I was 17 and never had problems with it . Personally I don't think I'm absorbing things properly as I've got a host of nutrient deficiencies as well and I'm loosing weight even though I'm eating more than ever . 


I had an email from my IBD nurse saying to contact my gp regarding pain management and period control so I might ask about the patch, I don't know much about that one . 

She also said I am having a white cell scan but they don't know how long it will be to get a date. 

I'm also low on b12 to the point where they are going to contact my gp to start me on injections .


----------



## empressentrails

Hi, just reading over your story and it sounds a lot like mine!  I live in Missouri, USA, and it seems your healthcare system is better than ours despite your problems.  I too, waited over a year for a colonoscopy, and have been through so many rude doctors!  Fortunately, you're covered, I pay almost my entire paycheck to health insurance, and still have bills piling up!  It's really crappy to have to deal with a disease AND a lifetime of debt for it!  Good luck, right now I'm on a small dose of steroid, 5mg every other day, continuous birth control, and anxiety meds.  My flares seem to be connected to what I eat, my periods, and anxiety.  Lately I've been sleeping with a binder wrapped tightly around my abdomen wich seems to help.  I'm better than I've been in years and am hoping for remission soon!  I'm studyi ng to be a dietitian and work in dietary at a hospital.  I see everyday how apathetic and just unknowledgable dietitians are about this disease, and I hope to change that.


----------



## valleysangel92

Hi all... things haven't been so great. I've been struggling a fair bit.

I got a date for my scan but it was going to be yesterday so I had to talk to my boss about it. We winded up having a big long chat about my health and how things are and how unpredictable it all is.

It was decided that I am not well enough to be doing such a manual job and that it was better to leave as I was having a high number of appointments and they couldn't cover for me all the time. My boss was very concerned for my health and felt that the environment was just no good for me, she said if I was her child shed be telling me it's not worth it. She says I'm clearly poorly or I wouldn't be getting the scan and especially not so quick (they're very expensive and have huge waiting lists) . She said she thinks I would just keep getting worse if I'd stayed there and to be honest I do see where she was coming from but I am deeply disappointed and upset to have lost the job.

The scan then ended up being cancelled as there was a problem with the syringe driver. It has been rearranged for the 23rd of July (they offered me next week but I'm away for my boyfriends graduation).

I have an appointment on Monday with a gp to see what my contraceptive options are. I'm seriously considering the implant. 


The scan etc can't come soon enough, I'm loosing weight and I'm struggling with pain pretty much every day.


----------



## 24601

Just catching up on your posts - so sorry they didn't go for biologics. I agree it doesn't make sense. Glad you have a good IBD nurse on your side.

I've had a white cell scan and yes, they rarely do them for Crohn's so I, too, think it is a sign that they are taking their search for your inflammation very seriously.

Very sorry to hear that you had to give up your job too. Hoping they finally get to the bottom of things and start treating you effectively :ghug:


----------



## Marlena

Oh, Angel, I am so sorry fo this latest wrinkle, but I am glad you'll have that scan soon and maybe get some real answers.  Praying for you


----------



## Cross-stitch gal

So sorry you lost that job after you had wanted it so bad!!!   I sure wish we could find something that would *finally* work on you! :ybatty:  Still sending lots of hugs your way... :hug:


----------



## valleysangel92

Thanks everyone. You know the most frustrating thing about all of this? In terms of crohns, I actually felt better on the immunosuppressants, I had less pain, I gained a healthy amount of weight, my vitamin levels were stable, I had more energy and I could eat without feeling sick. I know that I was taken off them for a very good reason 
, my immune system was basically  being destroyed but it just makes it even more frustrating that I'm in this position and that I was refused biologics. It doesn't make sense. If there wasn't anything to treat the immunosuppressants wouldn't of made me feel better.  I'm so done being taken for a fool.


----------



## valleysangel92

I'm starting my b12 injections today. Looking forward to a bit of energy and hopefully less headaches


----------



## DJW

I truly hope it helps.


----------



## valleysangel92

My first one is all done . They're quite stingy and sore but it's worth it if they live up to the reputation they have for giving people energy etc. I have another 5 booked for over the next two weeks (every other day). The nurse says I'm very brave


----------



## valleysangel92

Hello everyone, 

A few little updates - 

I'm now 4 shots into my B12 loader and starting to feel a little different with a bit more energy. Still not bouncing off the walls but I can function a little better than before at least. 

I saw a dietitian on Tuesday. It was someone I havent seen before and she was really good. She was concerned about my weight as I have dropped again and is keen to get it stable. My BMI is 19 which is borderline, but she says she classes that as underweight for IBD patients. To her a BMI of 20-25 is preferable and she would ideally like mine to be 23 ( I have never had a BMI of over 20, so good luck lol). She is writing to my GP to ask them to put me on supplements called vital. They are somewhat like ensure but the protein chains have been cut in half making them easier to absorb. She wants me to go back to clinic in 3 months.  

I saw my IBD nurse on Wednesday, bloods were taken etc. She's going to refer me to a gynecologist for advice regarding my difficult periods as I have now had 4 bleeds in 7 weeks. Each bleed has been lsting 5-7 days and is heavy and painful. Its been making it difficult to establish how much of the pain is crohns and how much is period pains at times. Crohns/IBD wise we are just keeping things as we are for the moment and waiting to see what the scan tells us. 

I had my white cell scan yesterday, it was a very long day but I hope it will show them what they need to make the next step. The scanner has a screen at the side which shows what they can see. The white cells show up as little white dots, and an area with more of these dots appears lighter than others. There was definitely an area which was much brighter than anywhere else, it was basically white. Obviously I'm no doctor and im not 100% sure how these things are analysed but it looked promising to me. 

In other news, my fibro is being horrid and pretty much everything hurts almost every day. It's extremely difficult at times. As much as I still hate the fact I had to leave work, I really see why my boss thought it was for the best. I really could not have done this past week and still kept up a job.


----------



## valleysangel92

Just a little add on, as a result of the fibro being horrid I wound up having a GP appointment regarding pain management. I now have a new medication called Gabapentin,  it was originally used as an epilepsy medication but was found to work very well for nerve damage and chronic pain med, so it is now licensed for use in conditions like fibromyalgia. It may even take the edge off the abdominal pain.


----------



## Cross-stitch gal

Oh, I so do hope that this will help with the pain!!!!


----------



## valleysangel92

Hello everyone

I have some news. I received a letter from my consultant with the results of my scan. He says there is evidence of inflammation at the end of my lower intestine, in the area they reconnected during surgery. 

We will be discussing treatment plans during my planned appointment on Wednesday and if I need anything else I'm to call my nurse.


----------



## Cross-stitch gal

Oh valley...  Sorry to hear of the inflammation.  But, thankful they *finally* found something in order to treat you for.  I hope Wednesday gets here fast for you...


----------



## valleysangel92

Thankyou lovely. It was a weird relief to get that. Obviously knowing I'm officially flaring isn't great, but it's something me and my IBD team have been saying for a long time now and at least we are now proved right. It feels good to know the people who doubted my consultant will now have to listen. 

I'm not sure if this opens up the chance for biologics again or if we will be forced to consider another route.  But at least something can finally be done.


----------



## valleysangel92

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 -_-.


----------



## Cross-stitch gal

There isn't anything else I can say but, "Oh my"!!!!!!      I wish there was more I could do from here for you girl other than sending you *lots* of hugs and support. :hug:


----------



## valleysangel92

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.


----------



## Cross-stitch gal

Good luck.   You know where to find me.  :hug:


----------



## jacques.debouaille

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.


----------



## Ihurt

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 -_-.


----------



## 2thFairy

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.


Since your GI isn't concerned, but you still are, what does your primary care doctor say about your elevated test results?


----------



## Ihurt

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:


----------



## valleysangel92

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.


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.


----------



## valleysangel92

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.


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.


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## Ihurt

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.


----------



## valleysangel92

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.


----------



## Clash

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!


----------



## valleysangel92

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


----------



## my little penguin

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 .


----------



## Maya142

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!!


----------



## valleysangel92

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 .


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.


----------



## valleysangel92

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!!


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.


----------



## valleysangel92

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.


----------



## Clash

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!


----------



## valleysangel92

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?


----------



## Maya142

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!


----------



## Cross-stitch gal

Lets hope this will *finally* work!!!  Glad to hear you had a good appointment!


----------



## valleysangel92

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.


----------



## valleysangel92

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.


----------



## valleysangel92

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.


----------



## valleysangel92

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.


----------



## Cross-stitch gal

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.


----------



## valleysangel92

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.


----------



## valleysangel92

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.


----------



## irishgal

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.


----------



## valleysangel92

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.


----------



## irishgal

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!


----------



## valleysangel92

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


----------



## valleysangel92

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.


----------



## Clash

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!


----------



## Cross-stitch gal

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...


----------



## valleysangel92

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.


----------



## ronroush7

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


----------



## valleysangel92

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.


----------



## Cross-stitch gal

This is good news!!!!!  Hopefully the wonderful news keeps rolling....  Lot's of hugs.


----------



## Catherine

If your trying increase your iron try to avoid milk either side of your iron rich meals as milk makes the iron less available.


----------



## valleysangel92

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.


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.


----------



## ronroush7

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.


I am hoping the best for you.  Keep us updated.


----------



## valleysangel92

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


----------



## my little penguin

Good luck
They tend to do that type of prep for kids


----------



## ronroush7

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


Wish you the  best.


----------



## valleysangel92

my little penguin said:


> Good luck
> They tend to do that type of prep for kids


It's quite unusual in the uk, I know it's popular in the US though so maybe we're just catching up with you guys.


----------



## Cross-stitch gal

Good luck girl!!!!  Hopefully all goes smoothly for you...


----------



## valleysangel92

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.


----------



## Cross-stitch gal

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.


----------



## valleysangel92

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.


----------



## valleysangel92

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.


----------



## ronroush7

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.


Glad you might finally have a diagnosis.


----------



## valleysangel92

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.


----------



## valleysangel92

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.


----------



## ronroush7

I am so sorry for all you are going through.


----------



## Cross-stitch gal

Oh girl!!!  I hope things get fixed soon so you can have heat and running water.  Sounds like a long soak in a tub of hot water will be in store!!!!!!!  Lots of hugs!!!


----------



## smt

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.


----------



## ronroush7

smt said:


> 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.


Yes.


----------



## valleysangel92

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.


----------



## ronroush7

I am sorry for all you are going through.


----------



## Maya142

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!


----------



## valleysangel92

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.


----------



## ronroush7

That is awful that you have to wait so long.  I don't know what the answer is.


----------



## Maya142

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!


----------



## Cat-a-Tonic

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.


----------



## valleysangel92

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!


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


----------



## valleysangel92

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.


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.


----------



## valleysangel92

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.


----------



## valleysangel92

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.


----------



## ronroush7

Wish you the best.


----------



## Cross-stitch gal

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:


----------



## Maya142

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 .


----------



## valleysangel92

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?


----------



## ronroush7

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?


Yes.


----------



## valleysangel92

Cross stitch - I can totally remember how much you had to fight. Doesn't it feel good when it pays off?


----------



## Cross-stitch gal

Sure does girl!!!  Sure does!  Glad that you're finally going to feel it too!!!


----------



## valleysangel92

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!


----------



## ronroush7

Wish you the best, valleyangel


----------



## Cross-stitch gal

Good luck girl!!!!  Hope all goes well tomorrow!!!!!


----------



## valleysangel92

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.


----------



## valleysangel92

Just to let you guys know I've set up an inflectra diary over at the treatment section, http://www.crohnsforum.com/showthread.php?p=907938&styleid=8 . 

I will of course still update here to let you know how I'm doing but the diary will be a more in depth account of how the inflectra is working and what it involves etc.


----------



## valleysangel92

My inflectra has been moved to the 6th due to the nurse being off sick since the 21st December


----------



## valleysangel92

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.


----------



## Bunty

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


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## valleysangel92

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.


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## Bunty

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


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## valleysangel92

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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## smt

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.


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## valleysangel92

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.


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## valleysangel92

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.


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## Cross-stitch gal

I hope you can get this taken care of soon.  xxxx


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## valleysangel92

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) .


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## valleysangel92

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.


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## Cross-stitch gal

That's good news!!!  Not that you've got the flu though.  But, at least things are going forward.  Keep up the good work girl!!!!  Lots of hugs!!!!


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## valleysangel92

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?


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## Cross-stitch gal

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!


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## valleysangel92

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.


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## my little penguin

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


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## valleysangel92

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.


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## my little penguin

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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## valleysangel92

I have two/ three doctors who are brilliant about things and always take good care of me, one who treats me like a 3 year old,  and another who panics when she sees me because I have a high heart rate and she forgets it's normal for me and I end up with a trip to hospital. The other doctors I don't really know as they have changed recently. Hopefully I can get in with one of the 3 good ones but phoning on the day is always pot luck, the only way to garuntee a certain doctor is to book in advance which takes 2-3 weeks. They were supposed to set me up with one specific doctor that I see every time but they never bothered. 

Thankyou


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## smt

I am very glad to know that you are doing well and your third infusion is over. I am sure the improvements would continue. The very best wishes.


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## ronroush7

Can you call one specific doctor and ask if that one can pencil you in if there is a cancellation!


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## valleysangel92

Ronrush it doesnt work like that in the UK, you call the surgery and they have anything up to 10 doctors and will put you in with whoever is free, if you want a specific doctor you have to be willing to wait anything up to a month. 

I've been to the doctors, luckily it was one that knew my history, they are treating me for a sinus infection but have told me if I get any worse I have to go back. They also picked up that my heart rate was high, which isnt really that unusual for me but its something that concerned her as its happening so often. She said it may just be because I'm poorly at the moment but she wants me to go back when I'm 'well' (or normal for me) and she'll take my heart rate etc again. If its still high then she wants to refer me to a cardiologist as she says its not good for me to have a constantly high heart rate, she likened it to being like on a treadmill all day. She said she would like them to rule out any underlying problems and then possibly put me on a medication to just bring it under control.


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## ronroush7

Wish you the best.


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## valleysangel92

I saw my gp today for my follow up. My heart rate was elevated again so she's referring me to a cardiologist, not sure how long that will take but probably a few months. I have to have an ecg tomorrow as well.


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## Cross-stitch gal

Oh boy girl!!!  If it's not one thing, it's another!!!!  Hopefully they can get this taken care of for you soon...


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## valleysangel92

I am finally off steroids! I took the last one on Wednesday, so first missed dose was Friday. I'm so happy to be finally off them! It's taken me over a year to get to this point! 

I wish I could say my body is just as happy, but as is usually the case it isn't on the same page as me. I was up at silly o'clock on Friday night with vomiting and have had intermittent nausea and pain ever since. I am hoping this is a coincidence and not a sign that I need to go back on steroids. I'm struggling to eat very much and I'm exhausted. 

I am due another inflectra next Wednesday and so far that seems to be going well. I'm over due a follow up appointment now though, I should have been seen nearly two weeks ago so ill give it a few more days and then give them a call to see what's going on. It really frustrates me when the booking office don't stick to the designated follow up period and push me back. They are in no way qualified to know how urgently someone needs to be seen so it   baffles me that they think they can ignore the consultants instructions. If I don't get any joy when I call them ill email my ibd nurse. I don't want to let it slide and end up detriorating further.


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## Cross-stitch gal

Glad you're off the steriods, but sad you're still having problems.  I too hope you can get a hold of the office and that appointment you need.  Lots of hugs...


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## ronroush7

valleysangel92 said:


> I am finally off steroids! I took the last one on Wednesday, so first missed dose was Friday. I'm so happy to be finally off them! It's taken me over a year to get to this point!
> 
> I wish I could say my body is just as happy, but as is usually the case it isn't on the same page as me. I was up at silly o'clock on Friday night with vomiting and have had intermittent nausea and pain ever since. I am hoping this is a coincidence and not a sign that I need to go back on steroids. I'm struggling to eat very much and I'm exhausted.
> 
> I am due another inflectra next Wednesday and so far that seems to be going well. I'm over due a follow up appointment now though, I should have been seen nearly two weeks ago so ill give it a few more days and then give them a call to see what's going on. It really frustrates me when the booking office don't stick to the designated follow up period and push me back. They are in no way qualified to know how urgently someone needs to be seen so it   baffles me that they think they can ignore the consultants instructions. If I don't get any joy when I call them ill email my ibd nurse. I don't want to let it slide and end up detriorating further.


Hope you feel better soon.


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## valleysangel92

Hello, I called the office on Thursday, they told me the next available appointment is in June!  Which would make me 3 months over due.

I have emailed my ibd nurse and told her about my symptoms and enquiring as to whether she can see me sooner, but she has no say over how appointments are allocated . She did say though that sometimes iv biologics can slow the gut down and cause obstruction type symptoms so that may be what's going on. I have an infusion on Wednesday so she's going to pop in and have a chat with me then.


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## ronroush7

valleysangel92 said:


> Hello, I called the office on Thursday, they told me the next available appointment is in June!  Which would make me 3 months over due.
> 
> I have emailed my ibd nurse and told her about my symptoms and enquiring as to whether she can see me sooner, but she has no say over how appointments are allocated . She did say though that sometimes iv biologics can slow the gut down and cause obstruction type symptoms so that may be what's going on. I have an infusion on Wednesday so she's going to pop in and have a chat with me then.


Hoping the best for you.


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## Cross-stitch gal

Oh boy.  I sure hope you can get in there sooner than June!!!!  Hang in there girl!!!  Lots of hugs.....


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## valleysangel92

My ibd nurse couldn't come to see me as she was stuck in a meeting this morning. So the infusion nurse took some bloods and asked me to email the ibd nurse and let her know. I've just emailed her now, she will probably get back to me sometime tomorrow now as she should have finished her shift by now. Hopefully she'll have some answers or recommendations. . Other wise I won't see anyone until my next infusion on June 2nd


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## Cross-stitch gal

Let's hope so and the ball will get rolling a little faster for you.


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## valleysangel92

I received a reply this morning, most of my bloods look alright but my Hb is low so I need to try and eat some iron rich foods. I'm looking into some over the counter supplements as I can't tolerate much fruit and veg and I don't get on with prescription strength iron supplements so that's not an option. I'm not aneamic enough for the hospital lab to allow an Iron infusion, but if things keep droping that'll probably be the way we go.


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## valleysangel92

I've had quite an improvement since my last infusion, so maybe the rough patch was the inflectra starting to wear off, I've heard its quite common for people to have a surge in symptoms in the last week or so before their infusion is due. I've had a reduction in pain and been eating better. I'm still steroid free which is the longest I've been off them in 2 years. 

Things aren't perfect, the past couple of days I've had some nasty pain again, but I'm due my infusion next week so I'm not too concerned. I'll keep an eye on things and see if the pattern continues and then inform my team if it does as I know they can bring the infusions to every 6 weeks if needed. 

I haven't recieved my follow up appointment yet, I was told that the first available would be the start of june, but I don't know how far up the waiting list I am. I should have been seen in March so hopefully it wont be too much longer. My main issue at the moment is a lack of energy, everything is so much effort these days so I'm hoping they'll be able to sort the aneamia out in some way. 

I haven't heard anything from cardiology yet either, I knew it would be a long wait but usually when I'm referred to a new department I get a letter from them saying they've received my details and placed me on the waiting list with an estimate of when I can expect an appointment and what to do if things become urgent, but I've not even had that yet. 

I'm also over due to see the dietitian. They called me about a month ago wanting to make an appointment but it was in a community center that's way out of my area and would be a nightmare to get to (they don't think about people who can't drive). They tried to tell me that she doesn't see patients in the hospital in the city center (which is still a 40 min bus ride) but I know that's rubbish because I've seen her there on multiple occasions including during inpatient stays. I called them out on it and they said they would get back to me, so they called me a week later and said I could be seen in the closer hospital, but they would have to call me another time to make an appointment but they've not contacted me since and I refuse to chase them because frankly the dietitians office has always been a bit of a shambles. I don't even find dietetics appointments helpful, but I can't refuse to go as its a requirement that people with Coeliac disease have regular contact with a dietitian.

Last but not least, I've had good progress with orthodontics, I've recently had xrays and molds/impressions taken to see if I'm ready for surgeons. I'm going back on the 7th June for a regular appointment but I've also recieved a letter for an appointment in July which I think may be with the surgeons, which would mean they think I'm at the right point for surgery. They have said though that they need to wait for the cardiologist to see me and clear things before they'll go ahead, but the orthodontist think's there'll be plenty of time as it may be November or later before I'm at the top of the surgical list. 

So, in essence, I'm currently doing a lot of waiting around on lists.


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## valleysangel92

Oh and Im getting my implant fitted on Friday, a little nervous but I know that compared to what crohns puts me through it'll be a walk in the park. Here's to the end of a week in bed every month (hopefully)!


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## ronroush7

valleysangel92 said:


> Oh and Im getting my implant fitted on Friday, a little nervous but I know that compared to what crohns puts me through it'll be a walk in the park. Here's to the end of a week in bed every month (hopefully)!


Best to you.


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## Cross-stitch gal

Glad to hear that for the most part you're finally doing better!!!!!  Hopefully, the rest will fall in place for you soon!  Lots of hugs!


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## valleysangel92

Thankyou both . 

Just a little up date, my implant fitting went well, my arm is sore now but hopefully will be worth it when it settles down. The better bit is that just before dinner I got a phone call from the booking center for the cardiology department and they've booked me an appointment for the 12th June. It's much faster than I expected and great news as the sooner we get to the bottom of what's going on with my heart the easier it will make my other treatment.


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## ronroush7

Wishing you the bedt


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## ronroush7

I meant best


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## valleysangel92

I had my infusion today. It was a disaster. First of all it took over half an hour to cannulate me and then i had a big allergic reaction and it had to be stopped. They said it was too big a reaction to chance putting it back on and they personally wouldn't want me to have it again but the ultimate decision goes to my consultant. They have enquired about switching me over to humira instead but again thats down to my ibd team.. So its a case of waiting to be contacted to find out whats happening.


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## ronroush7

I am sorry about the reaction.


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## Cross-stitch gal

That sucks... :ywow: Hopefully they can get something figured out for you soon... :hug:


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## valleysangel92

Hello everyone, 

Still feeling pants currently, my joints are hating me and I'm getting strong pains in my stomach, I'm making sure I've got plenty of my pain meds and actually taking them for once, I refuse to spend another summer in and out of hospital! 

I have received a gastro appointment, its been made for the 6th of July which is quite a wait but it's with my consultant (who has a waiting list of up to a year) instead of the IBD nurse. I'm hoping this means I'll leave the consultation with a concrete plan in place but I know they'll probably want to do bloods first and possibly a few other things. 

I'm also meant to be phoning to book an appointment with the dietitian at some point, which I'll try and make myself do later. I really don't find those appointments any use and my dietitian isn't good at listening to me when I tell her something isn't working for me. 

In other news I saw my orthodontist yesterday and they think I'm ready to be put forward for surgery in terms of how the braces are working, so my next appointment will be a combined clinic with both her and the surgeon. By this time I need to compile a list of all the people involved in my care and their contact details so that they can write to them and let them know what they are planning to do and see if it's safe with all the other considerations. It will be about 6 months before I'm at the top of the list anyway but there is a problem with unpredictability and the potential to be put on steroids at any time. The plan may change a few times and there is still the possibility that they decide its just not safe and cancel but for now we're going to carry on as if it is happening.


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## Cross-stitch gal

WOW!!!!  Sounds like it's coming all at once!!! :ywow:  Sorry to hear you're still in pain.  But, at least it looks like the ball is rolling forward for everything else!  :hug:


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## valleysangel92

Yea its a bit of a steam roller! Cardiologist next week too. Funny enough my dad said the exact same thing. This seems to happen a lot though, I spend months waiting then all my appointments happen at once .


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## Cross-stitch gal

Isn't that the way though...

Well...we'll see what happens!  Hopefully this all is a good thing for ya!!!


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## valleysangel92

I had my cardiology appointment yesterday, they did an ECG and said my heart rhythm is normal but the rate is high which is what we were expecting. The plan had been to put me on a 24hr heart monitor to see what my heart does but he decided that wasn't needed as my heart rate had been documented as high on several separate occasions and was high again yesterday. He said for some people its nerves but he doesn't think that's the case with me as I've seen so many doctors and been to the hospital so many times that its old news. My heart rate was 120 when he checked it manually and he said I appeared very calm.

 So, we know its high but we don't know why, so he took a blood test and I have to do a 24 hour urine collection (fun) to check my cortisol levels and see what my adrenaline  levels are like through the day and he wants me to have an echo (ultrasound of the heart) to check there aren't any structural problems. If the tests all come back ok then he think's its safe to say that a high heart rate is just what's normal for me and not something that we need to be concerned about. Some people do have medication for it but it seems like thats down to personal choice as he said it's probably medicating them for life for something that's actually normal for them so I may prefer not to go down that route. All in all a good appointment, just a case of waiting for this echo appointment to come through which hopefully won't be too long.


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## valleysangel92

Hey guys, 

Having a rough few weeks, my stomachs definitely noticing the absence of inflectra and is giving me hell for it. I'm taking morphine a lot more regularly than I had done for a good 3-4 months and honestly feel like the 6 July can't come quick enough. Mum keeps asking about going to the doctors but I know if i go to the GP they'll just send me into hospital and I'll end up with a consultant who doesn't know me who will at best stick me on steroids or at worst put me nil by mouth for a week, do no useful tests and then send me home. 

My joints have been awful since stopping too. I can't tell if the reaction has triggered the fibro or if its all related to the crohns and now that's going crazy everything else is joining in. 

I'm also getting lots of headaches, but thats partly due to our neighbours insisting on hammering for hours on end at random times, which has been going on for months with no indication of when it will stop.


----------



## Clash

I have IST (inappropriate sinus tachycardia) my resting heart rate use to be high like yours well even higher at times. It was most aggravating during physical activity when it would just take off. Yet deconditioning from lack of physical activity made mine even worse. I've got mine under control now with just a pinch of beta blocker although for many bbs don't work for their IST. Ivabradine is another med that has helped with IST and it doesn't lower BP like bbs can do.

I agree that some can live with it. I did for years but then it got to the point it was affecting my QOL and I had a couple episodes where my rate would take off and not come down. That's when I when through the diagnostic process and was given my dx. 

I hope your pain improves and you are able to wait it out for your GI consultant appt. So sorry that you are struggling GI wise right now!


----------



## valleysangel92

I remember you telling me about that, Clash.. at the moment I don't feel my heart rate is affecting my QOL, to be honest most of the time I'm not aware of it, but there have been a few times during appointments and hospital stays that nurses and/or doctors have gotten pretty worried about me because it's been consistently high over the course of a few hours or a day. At the moment, these checks are more for the doctors peace of mind than for me I think, especially with surgery due in the next 6 months or so. I think if I decided not to go on medication now I would have the option of changing my mind in future if it became a bigger issue. I'm still waiting to be contacted about the echo, haven't heard anything about the results of the other tests yet so assume there wasn't anything too alarming. 

Thankyou, I wouldn't mind if I could get admitted and see my GI and get sorted but they do it on a rota so its pot luck who you get and some of them are awful. One even told me I've never had Crohn's even though I'd already had surgery etc. Thankfully the surgeon's registrar was about and came and rescued me or I'd of gotten a lot worse that time but I might not get so lucky next time.


----------



## valleysangel92

Im not doing good right now. I went to see my GP the other day because my joints are terrible and her only suggestion was to take slow release morphine every day for the next few weeks and see if things settle. She wasnt sure if its fibro or Crohns related so said it was too tricky to know what else to do. This fine as long as I dont need to leave the house for any reason as it makes me feel extremely drowsy and even lightheaded at times with no warning. 

My stomach pain is getting increasingly worse and my mum is nagging me to go back to the doctors or call/email my ibd nurse but I see my consultant a week tomorrow (6th July) so Im not sure there's a point. The doctors will just send me to the hospital and I dont really know what the ibd nurse can do in that time.. I do have some budesonide left over that I could start taking if she said it was ok but other than that she would have to send a script for any other medication which would likely take until the start of next week to get here anyway.  I dont really know what my mums expecting my nurse to be able to do in the time between now and my appointment,  but she's being very insistent. I know she means well but most of the time she doesn't even know what my medication is called. I have tried to explain that my nurse wont have time to get a script to me and may not even see the email until Friday but its not getting me anywhere. Apologies if Im babbling or not making sense Ive had a lot of morphine today.


----------



## ronroush7

Hope you start feeling better soon.


----------



## my little penguin

Can't they call the script into your chemist ( pharmacy )?
What happens when you need to start a med the same day ?
I understand wanting to wait for your Gi but won't they just send you to the hospital anyways and then your stuck with whoever is covering .
Btdt x4 this year for ds and it was my least favorite thing to do .
Are they getting your humira covered or at least starting you on steriods until they get humira out to you ???
Have you tried volteran gel for the joints ?
Won't help a lot if your not getting others crohnd/arthritis meds but ....
Might help a little


----------



## valleysangel92

Unfortunately they've attempted to do that before when there was an error with one of my meds and the pharmacy said they need written proof of the prescription (they were being a bit of a jobsworth I think, I've heard of plenty of other people doing it). My local pharmacy may allow it as they know me well but they are usually poorly stocked as it's really small so it would then be a 2-3 day minimum wait for them to order it. If I needed a med the same day it would likely be a case of me travelling to the hospital to collect it, or them sending me an email with the name and then me taking it to my doctors and asking them to issue it. Usually though my IBD team wont issue a script without seeing me, unless its something I've taken before like steroids, if they think there's a chance of me needing something else then they either give me a script and tell me not to collect it until they contact me, or they will make me a clinic appointment for the next week.

My GP usually sends me to hospital because they don't know what else to do, they have been told many times by myself and the ibd team just to do a check up and then either do symptom management or steroids if appropriate but 9 times out of 10 they will send me to the hospital "just in case". The hospital then decides they will keep me to monitor, and sticks me on fluids, and then after a few days I usually get sent home because the pain is slightly better (they usually have me on IV meds and nil by mouth, so my guts getting a rest so of course it feels better) and usually no one has bothered to contact my GI or IBD nurse so they don't even know I'm there. 

If my GI admits me it will be under his care, its only if you go through A&E or your GP sends you that you end up with whoever is on duty, if your consultant chooses to admit you then they care for you themselves. To be honest, I don't think I need to be in hospital, I just need to start a treatment of some sort. Other than Iv steroids there isnt anything I can't do myself at home, I'm drinking well, I'm still eating relatively well, I've got pain relief (Im not good at taking it which is half my problem if I'm honest because the pain gets overwhelming before I take my pain meds) and my joints are much better off on my memory foam mattress, plus the hospital really struggles to feed me, they can't handle low fiber and gluten free at once. 

I'm not totally sure I'm getting Humira yet, the nurses at the infusion center thought it was my best option but my GI gets the final say so I won't find out for sure until I see him next week. I also don't know if theres a plan regarding steroids, this will be the first time I've seen my gi since January (I was meant to have an appointment in March but the booking office stuck its nose in and changed it). I haven't spoken to any of my actual team since before the reaction, so it's anyone's guess what they are thinking. Knowing what he has been like in the past though, I think he will want me on steroids, and if it is Humira I'm getting I can bet you he'll get the delivery company to speed it up. 

I think volterol would be a life saver for my joints but I've been told I'm not allowed to use it unfortunately, I have asthma and apparently the creams can be worse than the tablets because of the fumes being breathed in. It's something I've asked about myself so not a bad suggestion at all. I am, however, allowed the massage creams so sometimes I just use those, they aren't medicated but sometimes the action of massaging the joint helps a little.


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## my little penguin

Really Ds has had asthma since age two and has used volteran gel twice daily for a year 
No issues .
Our scripts come from the doctors office electronically to the pharmacy so it's offically just no need to wait /sometimes the doctored office calls it in or faxes it .
Inpatient even if his Gi admits is potluck and we had the same as you Iv /nil by mouth and he gets better - go home please - rinse repeat 

We have th same problem with the Ped office - if it's anything other than an er infection 
They send us to the ER "just in case" 
Only his actual Ped knows not to do that 

Can you get modulen until you see the Gi to at least help with the inflammation some ?
Won't help the joints but maybe the gut 
Can your gp order pt ?
That can help your joints until whatever kicks in


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## valleysangel92

Hm that's strange, it's odd how we're all told so many different things isn't it. Maybe I could get some and just try a small amount in a well vented room and see what happens, my asthma is well under control so I can't really see what harm trying a little can do. It's easily available here so I can pick some up the next time i'm in town. If it does set anything off I'll just pass it on to my mum for her knees (she has arthritis but won't go to the doctors to get her meds sorted). 
I wish ours would do that, even the repeats are printed off and taken to the pharmacies by hand by the receptionists (or you if you want to go somewhere other than the closest one). It would make life a lot easier, but then I guess having the paper script means we can try somewhere else if the first place doesn't have what we need. 

It surprises me that you end up with someone random even if admitted by your own doc. Here we would be told we need to go in, then allowed home to collect some Pjs and wash things etc, and then they would call us when they have a bed ready, so there's no waiting around at the hospital. 

My GP wont prescribe modulen or any of the supplement drinks without the say so of the dietitian, but I do have some left over from when I did the liquid  diet last year. I don't think it's enough to do total EEN but may be enough for 50/50 until wednesday at least. I'd call my dietitian and ask her to contact the GP about it but last year I practically had to beg her to allow me to have it.. she was convinced I wouldn't be able to stick to it for some reason. 

By Pt do you mean Physio therapy? If so, I have been wanting that for years. I had it as a teenager I had some on my shoulders and it made a big difference, unfortunately I was under a different doctors practice then and they were a lot more willing to get it. I have seen a few different doctors from my current GP office and they are very med happy. The closest to physio therapy they suggest is "graded exercise" but they haven't explained what they mean by that, and to go walking somewhere flat, which is a great suggestion apart from the fact that I live half way up a mountain. There used to be a way you could self-refer to physio but I'm not sure if that is still available or if you have to pay for it, perhaps its something I should look into. I love the NHS but it's very cost-driven at the moment and physio is obviously expensive with fairly long waiting lists which look bad so they don't want to add to those either. The one doctor that I think would give me physio easily seems to be off at the moment, and no one seems to know when she'll be back.


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## valleysangel92

Big day tomorrow.. Im seeing my consultant to discuss what happens next. Im hoping it will be straight forward and there won't be any problems or red tape in my way. I won't lie Im a little nervous but I know Im in good hands and he will do what he thinks is best for me. Just hoping he agrees with the nurses on what that is. I will update here when Im home and let you know what's happening.


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## ronroush7

Hoping the best


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## valleysangel92

Hi guys... I had my appointment today. It wasnt what I was expecting. My consultant doesnt want me on humira. He thinks there is too much risk of me reacting to that because of the similarities with the inflectra. 

Soo.. Instead, we do a fecal calprotectin and bloods, and he'll discuss my case in the mdt meeting and I'll see him in a month. He doesnt want me to go back on steroids because of the risks and my age etc.. So for now its sit tight and wait. If the tests show I still have inflammation then it will most likely be going onto entivyo. I dont know how to feel about that as Ive not heard many good stories about it when it comes to crohns, but it has to be better than nothing. I have 2 main concerns ,1 - what do they do about cannula access, as they have struggled a lot before and the nurses even said they didnt want me on an IV med 2) what happens if entivyo doesnt achieve the results needed (most of the people Ive known on it have found its failed or not quite achieved remission) . my consultant made it very clear he doesnt want me on any form of anti tnf.


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## Maya142

I know plenty of parents on the parents forum have kids who have reacted to Remicade but have been fine on Humira. I have never heard that before and my girls have been on anti-TNFs for 8 years or so.

I'll tag Clash and my little penguin - both their kids reacted but have not reacted to Humira.

Is it possible for you to get a second opinion?


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## Clash

My son did react to remicade. His was due to antibody formation. He was switched to humira and has not reacted to it. It's been over a year.

I've read an article or two that have stated there is a higher reaction rate to inflectra than to remicade. It was something to do with it being a biosimilar. Before that it seems that in some countries it wasn't going to be allowed in pediatric patients. Maybe Canada was one of the countries.

It's fairly common for people to be tried on humira if they react to remicade. One reason being the use of the mouse protein in remicade that isn't present in humira. Before I gave up on trying humira I would have the GI do a bit of research and talk with colleagues at other IBD centers.

Good luck


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## valleysangel92

Ive heard that too so I was surprised especially as Ive been told by him it can happen in the past,  but I think it was the speed and severity of the reaction that has caused him to be so reluctant. It may be that during the mdt meeting they suggest him giving humira a try for me but he seemed genuinely concerned when I described how I felt during the reaction. As soon as I explained he said he would be very uncomfortable letting me have it again now. He seemed particularly concerned by the high heart rate (Im under investigation to see if I have a heart condition,so maybe there's a concern about strain on my heart?). Or, maybe there are more similarities between inflectra and humira than there are between the original infliximab and humira? 

I have the right to ask for a second opinion yes but id probably end up with it being my old consultant who wouldn't even put me on pentasa in the past. 

I think I may let things settle in, do some reading up, get my head around it and then in a few days or a week or so email my ibd nurse with some questions or something. Right now its all a bit of a shock and so Im not being completely logical about it . He said he would be in touch when he has my test results, so I might get a call off him or the nurse in a week or two anyway. Once we have those there should be a clearer indication of if they put me on it or not . Ive no idea what happens if the tests are clear though.


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## valleysangel92

Clash said:


> My son did react to remicade. His was due to antibody formation. He was switched to humira and has not reacted to it. It's been over a year.
> 
> I've read an article or two that have stated there is a higher reaction rate to inflectra than to remicade. It was something to do with it being a biosimilar. Before that it seems that in some countries it wasn't going to be allowed in pediatric patients. Maybe Canada was one of the countries.
> 
> It's fairly common for people to be tried on humira if they react to remicade. One reason being the use of the mouse protein in remicade that isn't present in humira. Before I gave up on trying humira I would have the GI do a bit of research and talk with colleagues at other IBD centers.
> 
> Good luck


My GI is going to talk about me in a multi disciplinary meeting so he will be consulting other doctors and nurses in the field plus surgeons, so that is happening. 

My nurses told me inflectra seems to cause a reaction at the 6th infusion mark and I was on my 5th so not far out and I have heard of quite a few reactions. 

To be honest he seemed taken aback by how bad my reaction had been, so maybe it was a bit of a knee jerk reaction. But he is known for being quite cautious. I just hate being back on a waiting game not knowing what's happening again.


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## ronroush7

I developed folliculitis as a result of Remicade.


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## valleysangel92

ronroush7 said:


> I developed folliculitis as a result of Remicade.


I had a severe allergic reaction to inflectra , a new version of Remicade. I was told I would likely go on humira but today was told I wouldn't be going on that.


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## Cross-stitch gal

Oh my goodness!!!  Well, I hope those results come back soon and they can get you figured out again...


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## ronroush7

valleysangel92 said:


> I had a severe allergic reaction to inflectra , a new version of Remicade. I was told I would likely go on humira but today was told I wouldn't be going on that.


They moved me to Stelara and then Humira.  Best to you.


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## valleysangel92

ronroush7 said:


> They moved me to Stelara and then Humira.  Best to you.


We dont have Stelara in the UK,but my doctor doesnt want me on any anti tnf now.


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## my little penguin

Ds reacted to remicade even on iv steriods
He has reacted with anaphylaxis in the past to food and has had multiple reactions to many different drugs( all contrast dyes /galulidium /glycogen ) /bee /cold etc so extremely reactive to everything
He has been on humira for 4 plus years with only minor hives at the injection site when we used the back of his arms  (same area as his allergy shots so they think that was the issue )

They can skin prick test you to humira
We did this with Ds
You place a small amount of humira on the skin similar to a scratch test 
Use a histamine and saline scratch as a control
Then they can tell if your allergic to the drug 

Waiting and hoping your already bad inflammation won't get worse without any brakes on ( aka steriods ) sounds like you could go into a full out flare or worse 
Especially waiting for at least a month since you were suppose to see your consultant on MARCH and it's now July 
Not convinced that a month truly will be only a month 
What are they going to give you to stop the progression of the disease while they wait /discuss ?
Un treated or under treated crohns can be deadly quickly so I am very concerned especially since you stated that your mom wanted you at the A&E prior to this visit it was so bad 

I understand the concern with reactions Ds has an epi pen on him at all times 
They could test and administer the humira it in the hospital 


Fwiw Ds had no antibodies to remicade and still reacted 
But is fine with humira


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## my little penguin

I didn't think stelera was anti tnf I thought it was diffferent 
I know simponi is anti tnf 
Tagging maya142


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## Maya142

Stelara is not an anti-TNF, it's an IL 23 and IL 12 inhibitor. I think she was just saying that it's not available in the UK. I do think it's available for Psoriasis but it would have to be prescribed off-label for Crohn's because it's not approved yet.

I also think you should pursue Humira. We have met many kids who have had reactions to Remicade but have done great on Humira. I actually asked a researcher who said if my daughter reacted or even had antibodies to Remicade, then using a biosimilar like Inflectra was not an option, but using a different anti-TNF was not a problem at all. 

The only issue with Entyvio is that it seems to take much longer to work and Humira has a much better track record. It would be a shame to just rule it out and ALL the other anti-TNFs completely (Cimzia, Simponi). As you know, there are very few drug options for Crohn's and you have already tried 6MP, so to limit them further could be very problematic.

Good luck!! I hope your doctor is able to come up with a solution.


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## Cross-stitch gal

My GI doesn't want me on any of those.  Prednisone, Remicade or Humira.  He told me when I first saw him in 2013 he wanted me far away from those.  Those are the last option to use.  And, because my former GI gave me the Pred like candy every time I had a flare maybe partly why I'm using metformin now.  

There's no way I'm putting down anyone who is on these and have found it working for them.  I just know, what I've been told for me.  I hope everyone can find something that will help with this challenge of ours...  :ghug:


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## valleysangel92

my little penguin said:


> They can skin prick test you to humira
> We did this with Ds
> You place a small amount of humira on the skin similar to a scratch test
> Use a histamine and saline scratch as a control
> Then they can tell if your allergic to the drug


This sounds like something I could bring up, but whether they would be willing to use a dose for this I'm unsure, it's worth asking though. 



my little penguin said:


> Waiting and hoping your already bad inflammation won't get worse without any brakes on ( aka steriods ) sounds like you could go into a full out flare or worse
> Especially waiting for at least a month since you were suppose to see your consultant on MARCH and it's now July
> Not convinced that a month truly will be only a month


I've already taken care of this, if its under 6 weeks, you can make an appointment with the out patient's reception, so that's what I did. I have an appointment firmly booked for the 3rd of August, and had a text this morning to confirm the booking. There was no way I was leaving that in the hands of the booking office again. I share your concern regarding the wait and hope approach. He has said he will contact me once he has the test results, so maybe they will trigger him putting me on something. I know in the past I've had test results messed up by being on steroids, but he could have given me a script with the instruction not to use them until I've done the sample. 



my little penguin said:


> What are they going to give you to stop the progression of the disease while they wait /discuss ?
> Un treated or under treated crohns can be deadly quickly so I am very concerned especially since you stated that your mom wanted you at the A&E prior to this visit it was so bad


I am on pentasa, but thats it. I have been on it for 2 years, am on full dose, and feel its been about as useful as a box of frogs. I know that some people are being taken off this because their doctors don't think it actually does anything for Crohns so therefore not worth the risks. If I absolutely have to go on steroids it would be budesonide I expect, which of course is slower acting, so takes longer to control the flare. I would have thought it wise to start it as soon as possible knowing how long it can take to work,but seems not. My last bone scan showed bone deterioration so i'm getting closer to osteoporosis, my IBD nurse didn't seem to worried, but I guess it's concerned my GI more. 



my little penguin said:


> I understand the concern with reactions Ds has an epi pen on him at all times
> They could test and administer the humira it in the hospital


I understand his concern, and know that he just wants to keep me safe, I could see he was genuinely not comfortable with the idea of humira, but I would like to ask him what makes me different to the others who have tried it and been fine. 



my little penguin said:


> Fwiw Ds had no antibodies to remicade and still reacted
> But is fine with humira


----------



## valleysangel92

Maya142 said:


> Stelara is not an anti-TNF, it's an IL 23 and IL 12 inhibitor. I think she was just saying that it's not available in the UK. I do think it's available for Psoriasis but it would have to be prescribed off-label for Crohn's because it's not approved yet.


Yes, sorry, bad wording it was late here. Sterlera isn't yet used for Crohn's in the UK, we are just starting to trial cizima, but only in cases where no other medication has worked and surgery is the only other option. We take quite a while after you guys to start using meds off label etc. 



Maya142 said:


> I also think you should pursue Humira. We have met many kids who have had reactions to Remicade but have done great on Humira. I actually asked a researcher who said if my daughter reacted or even had antibodies to Remicade, then using a biosimilar like Inflectra was not an option, but using a different anti-TNF was not a problem at all.


I'm thinking of emailing my IBD nurse with some questions or at least writing a list so I'm prepared when they contact me with test results. I didn't get a chance to look at my bloods form to see what they were testing yesterday, so I'm not sure if he put an anti-bodies test on there, but will find out when I get the results. I am going to be doing some research over the next few days to be well prepared. 



Maya142 said:


> The only issue with Entyvio is that it seems to take much longer to work and Humira has a much better track record. It would be a shame to just rule it out and ALL the other anti-TNFs completely (Cimzia, Simponi). As you know, there are very few drug options for Crohn's and you have already tried 6MP, so to limit them further could be very problematic.


This is what I am concerned about, its a  whole class of medications and so far entiyvio is the only new drug to come out in Britain that isn't anti-tnf for quite a while. Plus from what I've read on entyvio, it doesn't have a massive amount of success in Crohn's. 



Maya142 said:


> Good luck!! I hope your doctor is able to come up with a solution.


Thankyou, lets hope sooner rather than later.


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## valleysangel92

Cross-stitch gal said:


> My GI doesn't want me on any of those.  Prednisone, Remicade or Humira.  He told me when I first saw him in 2013 he wanted me far away from those.  Those are the last option to use.  And, because my former GI gave me the Pred like candy every time I had a flare maybe partly why I'm using metformin now.
> 
> There's no way I'm putting down anyone who is on these and have found it working for them.  I just know, what I've been told for me.  I hope everyone can find something that will help with this challenge of ours...  :ghug:


I understand, if I go on steroids it is likely to be budesonide not pred which is some protection, I know my last gi was very steroid happy, maybe because they made me feel better and gave him an easy life (he wasn't the hands on type).


----------



## valleysangel92

Thankyou all for taking the time to respond to me, it is nice to see there are people that share my concerns with all of this. My family are glad he doesnt want me on humira as they are concerned about the reaction risk, but don't seem to understand the impact of ruling out an entire class of medication not just right now but long term. While I understand the concerns and understand my GIs caution, it does make me wonder what they would do if entyvio did fail. 

I have tried pentasa, pred, budesonide, azathiprine, 6MP and inflectra, so there's not a lot left as it is. My team were quite strongly against MTX (because I was so badly affected by 6MP), and that would be going backwards anyway. If they rule out all anti-TNF then that means its basically entyvio or constant steroids until a new drug is released. I'm not normally a person to worry, but this does concern me and I was quite upset yesterday. My mum seems to think they will find something and it will all be fine, as if there's something they haven't told me about yet, but from what I know this is it for now. It doesnt seem to have hit her that options are limited and there isn't an endless stream of possibilities awaiting me.


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## Maya142

Hang in there! I really hope they will consider the other anti-TNFs for you. It's known that Remicade (and I would guess Inflectra) tends to cause the most reactions. I don't think I've ever heard of anyone reacting to Humira or Simponi the same way.

Good luck, will be thinking of you.


----------



## Cross-stitch gal

Maya142 said:


> Hang in there! I really hope they will consider the other anti-TNFs for you. It's known that Remicade (and I would guess Inflectra) tends to cause the most reactions. I don't think I've ever heard of anyone reacting to Humira or Simponi the same way.
> 
> Good luck, will be thinking of you.


I agree with Maya.  Sending you lots of hugs!!!!


----------



## valleysangel92

I had a follow up with a dietitian today. She was happy with my weight and how Im eating and thinks I have good control over my diet. She thinks its fine for me but to have supplements and don't need to worry about forcing myself to have the ensure etc . She said if it wasnt for me having coeliac she would discharge me but everyone with coeliac disease has to be seen at least yearly under the hospitals policy so she can't. 

She did have the results of my recent bloods and calprotectin and although she couldnt interpret them fully she did tell me some of my bloods are high and that my fecal calprotectin is also raised. Its not as high as it was before I had inflectra but it is still up, so that indicates that there is still inflammation active. So now its a case of waiting and seeing what happens next treatment wise.


----------



## valleysangel92

I had my heart scan just over a week ago. It wasnt a pleasant experience and was actually pretty painful at times but its over with. I haven't heard anything about results yet but I know the doctors do go on holidays thus time of year and sometimes letters take a long time to get to me anyway. 

I have an appointment with my ibd nurse tomorrow, I have lots of questions to ask her. I am hoping we will be able to form a concrete treatment plan that im comfortable with. 

Since my last post, I have read a few more cases where people have reacted to inflectra or infliximab and then not been allowed humira because of the risk of reaction so it seems like my consultant isn't alone in his caution. I will be making sure I get all the information I need before agreeing to go straight to entyvio though. I have a good relationship with my ibd nurse and she answers all my questions honestly. 

There is another reason why I really need tomorrow to work out. I have finally been given a date for my jaw surgery. It will *hopefully * be in September . I've known for a few weeks but didn't want to say too much too soon. I won't go into too much more detail yet. I haven't told many people and don't want to go into specifics until I know my ibd team are happy for it all to go ahead and there's no other specifics but just wanted to mention it as it will affect decision making.


----------



## Bunty

That's interesting, what you say about not being allowed Humira. My last infliximab infusion, which was delayed by five weeks, caused me to have a reaction within two minutes of starting it. It was my fifth infusion and I'd had no reaction whatsoever up till then. They gave me a shot of piriton (I'd already had oral piriton) which sorted things out, and we continued the infusion with no further problems. For the following two days though I had extreme joint pain in ankles and knees, another thing which had never happened after previous infusions. 
I spoke to the IBD nurse yesterday and theyve decided to go ahead with the next infusion on 5th September but add on IV piriton (the drugs proper name eludes me) and see what happens. As she said, treatment options are limited...
I don't know how long you've had this disease valleysangel, I've only had it two and a half years but it seems my options are running out pretty quickly particularly if Humira isn't one of them.
I'm really pleased you have a date for your jaw surgery, fingers crossed it can and will go ahead.
Bunty x


----------



## valleysangel92

I think in my case its the severity of my reaction they are concerned about. I have heard of many people being allowed humira after reacting to infliximab and being alright but I don't know how bad their reactions were. My appointment is later today so I will hopefully find out why they are so set against me having it. I know that when I reacted, I had a very fast heart rate and they were concerned that if they hadn't responded fast and given me steroids I would of developed breathing problems, they told me that they sometimes give the steroid and then try again but with me they werent comfortable to do that. I have had Crohns disease since I was 15 but wasnt diagnosed until I was 19, and it seems mine is very persistent. I've had surgery and tried every class of med (specifically pred, budesonide, pentasa, azathioprine, 6MP and inflectra).


----------



## valleysangel92

Hey everyone,  

It looks like we are going for entyvio. My ibd nurse doesn't want me on humira either. She says apart from the issue of similarity there has been a problem with the injections recently. They have changed the make up of the pens to make it "no sting" and the newer pens have been malfunctioning. They are getting reports of people using the pen and finding that the liquid is trickling out rather than going into the skin. Its also being reported that there have been problems with extra bruising etc with the newer pens. So while they are figuring out what's happening they are reluctant to start people on it if they have a history of difficulty with meds. 

I am being reviewed at a MDT meeting on Friday where they will discuss me being put on entyvio. My IBD nurse seems determined I will get on it and she says there's no logical reason for them to turn me down as I still have inflammation and I have previously been on inflectra so have technically already got approval for biologic treatment. She is going to email me on Monday and let me know what is said. 

They are going to try and keep me off steroids with my upcoming Op in mind. As I have been waiting since I was 17 she doesn't want to jeapordise it unless absolutely needed. If I start to really struggle however I am to email her and let her know.


----------



## ronroush7

Wish you the best.


----------



## valleysangel92

Hello everyone. Had my follow up with the ibd nurse today. I've been given the go ahead to have entyvio but because my Op is now only 2 weeks away it wont be viable to start the infusions until after surgery. I provisionally have my first infusion booked for the 3rd October but this may have to change as I may not be well enough to get to the appointment (its only 2 and a half weeks after surgery and I would have to go by myself on a 45 min bus journey. It would also depend on me being off any antibiotics that I get put on after the Op. 

In the meantime I have a new medication called alverine citrate to try and help with my abdominal spasms and my ibd nurse has taken some blood as my iron is very low so she feels that I would benefit from an infusion.


----------



## valleysangel92

My jaw surgery is on Thursday. I'll be staying in over night so they can monitor me and make sure im drinking alright etc. I'll be on a liquid diet for a couple of weeks and then soft food. From what I've read it'll be about 8 weeks before im allowed to chew anything. Its quite normal to loose weight with this kind of surgery which im not crazy about having worked so hard to gain weight but its a good excuse to eat lots of chocolate when im better. 

This has been such a long time coming and happened all of a sudden but I can't wait for it to be over. I don't really know what to expect when I wake up or in terms of pain etc which is a little scary but I know I have good doctors. 

There's a decent chance this will escalate my Crohns flare and make it harder so I will have to be careful but having treatment lined up makes that easier. I've made sure I have a good amount of pain meds here incase they don't give me anything useful (they tend to use ibprophen etc for this kind of thing) but hopefully they will be able to supply something decent for me. 

I will update when I can and let you all know how it goes.


----------



## ronroush7

The best to you.


----------



## Cross-stitch gal

Glad to hear they'll finally get you taken care of!!!  Hope all goes well and that you'll be able to heal without too much pain.  Lots of hugs being sent to you!


----------



## valleysangel92

Hello all.  I had surgery yesterday as planned.  I had the option to come home last night if I really wanted to but the nurses thought I should stay for pain management through the night so I did.  Everything went to plan.  My surgeon says I did very well and that my jaw is now in the "perfect " place. I'm in a fair amount of pain and have pins and needles in my lips but I'm assured that the pins and needles are a very good sign.  It's 4-6 weeks of a liquid diet which will be hard going but I know in the end it will be worth it. I have a post op follow up next Wednesday to see how I'm doing and for the rest of the time I'm just going to be taking things very easy.


----------



## Cross-stitch gal

Glad all went well and hope your healing goes smoothly and quickly!


----------



## ronroush7

valleysangel92 said:


> Hello all.  I had surgery yesterday as planned.  I had the option to come home last night if I really wanted to but the nurses thought I should stay for pain management through the night so I did.  Everything went to plan.  My surgeon says I did very well and that my jaw is now in the "perfect " place. I'm in a fair amount of pain and have pins and needles in my lips but I'm assured that the pins and needles are a very good sign.  It's 4-6 weeks of a liquid diet which will be hard going but I know in the end it will be worth it. I have a post op follow up next Wednesday to see how I'm doing and for the rest of the time I'm just going to be taking things very easy.


I am glad things went well.  I hope you have a great recovery.


----------



## valleysangel92

Hey everyone. Should have started entyvio today.. Went to the hospital to have it.  Got my iv in and they started running an infusion and I thought it was all fine.  Until I noticed it was taking a lot longer than what I had previously been told entyvio needed,  so I spun the bag round to see how much more I had left to go..  Only to find out they had given me inflectra instead of entyvio! I pointed it out to the infusion nurse and she called my IBD nurse over who confirmed that I was meant to get entyvio. 

It seemed that there was some kind of break down in communication and or a problem with the paper work as the infusion nurse had no idea I was meant to be on entyvio. 

Luckily I escaped a big reaction,  probably because it had been so long since I last had the inflectra, but I did get a raging headache and was feeling shaky.  This eased about half an hour after the infusion was stopped.  

The infusion nurse has told me I can put in a formal complaint if I want to but to be honest I don't feel as though this is entirely down to her.  She is not qualified to do scripts so someone else did that, and technically she just follows instructions. Yes she should have checked what med I was meant to get and asked about allergies but it seems as if there was some information missing from my notes or a form had been filled in incorrectly. The nurse will have to go through a meeting and assessment etc and has taken full responsibility for what happened and she was obviously very sorry that it had happened. But I think that other people obviously made mistakes too and should also be held accountable. 

I'm really drained and have a headache and sore joints but OK considering. I have to wait two weeks to start the entyvio now.


----------



## ronroush7

valleysangel92 said:


> Hey everyone. Should have started entyvio today.. Went to the hospital to have it.  Got my iv in and they started running an infusion and I thought it was all fine.  Until I noticed it was taking a lot longer than what I had previously been told entyvio needed,  so I spun the bag round to see how much more I had left to go..  Only to find out they had given me inflectra instead of entyvio! I pointed it out to the infusion nurse and she called my IBD nurse over who confirmed that I was meant to get entyvio.
> 
> It seemed that there was some kind of break down in communication and or a problem with the paper work as the infusion nurse had no idea I was meant to be on entyvio.
> 
> Luckily I escaped a big reaction,  probably because it had been so long since I last had the inflectra, but I did get a raging headache and was feeling shaky.  This eased about half an hour after the infusion was stopped.
> 
> The infusion nurse has told me I can put in a formal complaint if I want to but to be honest I don't feel as though this is entirely down to her.  She is not qualified to do scripts so someone else did that, and technically she just follows instructions. Yes she should have checked what med I was meant to get and asked about allergies but it seems as if there was some information missing from my notes or a form had been filled in incorrectly. The nurse will have to go through a meeting and assessment etc and has taken full responsibility for what happened and she was obviously very sorry that it had happened. But I think that other people obviously made mistakes too and should also be held accountable.
> 
> I'm really drained and have a headache and sore joints but OK considering. I have to wait two weeks to start the entyvio now.


Hope you feel better soon.


----------



## my little penguin

Oh no so sorry that happened


----------



## valleysangel92

Hey guys, bit of an update for you, 

I had my first proper vedo infusion on Monday and there were no issues this time, it was really quick going through, took longer being watched afterwards than actually having the infusion, eventually they wont need to watch me though I'll be able to leave as soon as I'm done once they're confident I won't have a reaction. 

They took some bloods before they gave me the infusion and I had a check up with my IBD nurse today and she gave me the results, the inevitable has happened and I am now officially anaemic with a HB of 95 (they want at least 115). This isn't a massive shock as my iron level has been creeping down for months and obviously there would have been blood loss during my surgery so that would have had a knock on effect too. 

I also have a low white cell count, which they were a little more concerned about as one dose of inflectra shouldn't of lowered it that much and it was done before the vedo was started. 

They have done repeat bloods today and will let me know what the results are and get into contact with my consultant if needs be to sort out treatment such as an iron infusion. We have a really pedantic lab at our hospital and they have really strict rules about who gets them. 

I have a follow up with her booked for 6 weeks time, but we will touch base at my infusions anyways as she is always about on Mondays which is my new infusion day.

I'm still healing well from my surgery and there are no signs of an infection or any delayed healing, and my surgeon is so happy that I don't have to see him until the 14th December.


----------



## valleysangel92

Hey guys, really not doing so well the past week. I have had increasingly severe abdominal pain which reached a peak yesterday, I managed to get an emergency slot with a GP but it was a doctor I haven't seen before and they didn't really seem to understand what I needed. They did a test for a urine infection and when that came back clear they lost interest and told me to contact my IBD nurse and increase the alverine citrate. They told me I had a temperature but didn't seem bothered enough to try and find the cause. They also said if things don't settle I have to go to A&E but then contradicted themselves saying they didn't think it was that bad. 

 I have emailed my IBD nurse and described my symptoms, which include black stools, and they have emailed me back saying that I may have a narrowing or be backed up, and that there is a possibility that I have an infection. They are contacting my consultant incase there is the possibility of an abscess or a collection of fluid and think that the black stools could be old blood coming out and that this would explain why I'm aneamic. 

The good news is that my consultant has approved an Iron infusion, which I may be able to have on monday when I get my Entyvio but this depends on the infusion nurse as she may think its safer to wait until next week incase I have a reaction to something. 

I am barely eating and feel very drained and sick, I'm taking full doses of oramorph and the pain is still severe after that. I actually yelled out through the pain yesterday and really worried my partner as thats really unusual for me. Hopefully things will settle down, but if they get any worse its A&E for me.


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## ronroush7

I hope you get better soon.


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## valleysangel92

I've been admitted to the hospital. I called the out of hours service and they sent me to see a doctor who sent me in to hospital. I've been put on fluids and they want to look at my pain management and I'm going to have an iron infusion in the morning.


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## ronroush7

Wishing for a speedy recovery.


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## my little penguin

Hope things improve now 
Are you still on steroids ???
Just asking since entyvio does seem to induce remission but does better at maintaining it. And it tends to work slowly (up to one year to get to maintainance)

Wishing your GI can come up with a plan soon


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## Maya142

We were told the same thing too - Entyvio takes a long time to work - much longer than Remicade/Humira. We were considering it for my daughter and her GI said it takes at least 6 months, if not longer.

Really hope they can get you feeling better quickly!


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## Cross-stitch gal

I'm sorry to hear you're still struggling.   Sending lots of hugs and hope that they'll get you taken care of. :hug:


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## valleysangel92

Hi everyone 

MLP - I haven't been on steroids for about 6 months now. I came off them when I was on inflectra and I didn't go back on them afterward. Due to me having surgery etc they didn't want me on them due to blood risk and also they generally want to keep me off them as much as possible because I've had quite a lot of steroid use.  I've not seen my gi as its just whoever is on call when you go in as an emergency in the UK and there's limited coverage on the weekends. 

Cross stitch - thankyou.  They were very nice to me and did look after me well. 

I'm home now.  They thought it would be better to let me home for a good night's rest as I didn't get any sleep last night due to having to sit in a chair all night. They have asked that I have my iron infusion tomorrow as they didn't want to do it while there are limited doctors available in case I had a reaction. I'm due entyvio tomorrow anyway. 

Maya - I've been told 3-4 months as a minimum. In the UK if you aren't feeling any affect after that point they take you off it as studies show it is unlikely to work if it hasn't started to by then.


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## valleysangel92

Hey guys, I'm still in a fair amount of pain with my stomach and suffering with nausea, but I am seeing my IBD nurse at the start of December and hopefully she will have a plan as she was going to speak to my consultant regarding next steps. I had an entyvio infusion the day after I left hospital and they had real trouble getting me cannulated and have again emailed my consultant to ask him to consider putting me on an injectable med. They are going to try and persuade him to let me try simponi, which he previously ruled out due to it being anti TNF but the situation with my veins is getting rediculous and they think it is unfair to constantly put me through multiple cannula attempts when there are other options available. 

There has also been another development. I have been noticing increasingly severe and persistent joint pains over the last couple of months and finally made an appointment at a new pain clinic my doctors practice has running. The appointment was this morning and it turned out to be with a physiotherapist. The interesting part is that they don't think my previous diagnosis of fibromyalgia is correct as I don't really fit the criteria properly. In a fibro patient, most of the pain is in the muscles and connective tissue, whereas my pain is in my joints (always has been) and I also have swelling which is not a characteristic of fibromyalgia. He thinks there is some sort of inflammatory process which could be crohns related arthritis or another inflammatory condition. My main reason for going was to try and better manage my pain but he didn't feel that he was qualified to fiddle about with my medications and thought that my case as too complex for him to deal with. He has told me to see a GP and to tell them what he has told me and that it might be best for me to get sent back to rhuematology to look into things deeper and get a better handle on the pain control side of things. I spoke to the receptionist about booking this on my way out but they couldn't offer anything so I have 
to call at 8am tomorrow and see if they can fit me in.

I'm still getting my head around everything he said but to be honest it makes a lot of sense to me. I only saw a rhuemy once and they basically did one scan and then sent me packing back to the GPs. Over the years there have been a few times where I've felt unsure of the fibro diagnosis as I've always been told it doesnt cause swelling and there have been subtle things that havent added up (like my joints being better when I've been on steroids). Although I didn't get the help I was looking for this morning, I'm really glad I had that appointment as it's really helped me and I now know I need to push to get more scans or at least a proper monitoring program. I'm grateful he was so honest with me about what he thought and that he admitted he didn't think it was something he could handle rather than poking around in things he didn't have a full understanding of. I just have to hope that I can get an appointment tomorrow (to pre-book one means waiting until 29th November) and that I don't have to fight to hard to get what I need.


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## Maya142

Glad you are being sent back to rheumatology. It could very easily be SpA. What joints bother you the most? Pain that gets better with movement and worse with inactivity is common is SpA. Morning stiffness is also a red flag. Improvement with steroids is DEFINITELY a red flag!

Both my daughters have been on Simponi - one for AS, and one for both AS and IBD. My older did well on it, my younger did well from an IBD perspective, but her AS didn't do so well (though it did get better). The shots are very easy and painless (which is a nice plus).

I am surprised they might try Simponi before Humira -- reactions are unlikely on Humira as well as Simponi (since they are not mouse proteins like Remicade) and Simponi is not approved for Crohn's here, just UC. But it is being used off label and should work.

Good luck!


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## ronroush7

Hope you get answers soon.


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## valleysangel92

Hey Maya,  I'm really hoping so! I have to get the gp to agree to refer me to a rhuemy but the physio I saw today clearly knew a lot more about fibro than the gp does so hopefully they will listen to him and take his word for it that it isn't that.  The most painful joints are my hips and knees, but I also get pain in my hands and ankles as well. I got better on pred and I also got better on inflectra before I had the reaction. 

Simponi has only recently been approved for crohns here and they are hoping that stelera will soon follow as well (it's in trial stages here) but we have to wait and see as there's a lot of red tape to get through. 

Well,  the nurses who work in the unit where I have my infusions wanted me to have humira months ago, but when I had the reaction to inflectra, my gi flat out said no to humira and moved me straight to entyvio. At my last infusion one of the nurses was talking to me and said it's simply not practical or fair to keep having 6+ attempts at a cannula so they have emailed my consultant to gently suggest golimumab (Simponi) as an alternative. I would be very surprised if my gi goes for this idea, but gaz, the ibd nurse that works in the unit, is very good at standing up to people so if anyone can get me switched over its him. The thing is I have scarring forming in my veins already so we really can't afford to keep messing them up.  I am really not bothered by needles and although going to the hospital is time consuming i don't really mind, so it's literally a matter of the cannulas being a problem. Of course the other thing is if I was on Simponi, this would potentially help my joint pains, where as entyvio has no affect on inflammation outside the gut.


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## Maya142

Very interesting to hear it has been approved for Crohn's there! I hope it will follow suit here.

I really hope you get Stelara over there soon. That is also in trials for SpA, so it would be nice to have as an option for all those who have both diseases to deal with! It is a shot (I know that's a plus) after 1 infusion as the loading dose.

My younger daughter's Crohn's did VERY well on Simponi - so will keep my fingers crossed for you. 

The hip, ankle and knee pain is very common in SpA. Hands are a little less common but definitely can be involved. I hope they will get you to a rheumatologist soon. As you probably know, IBD associated arthritis can flare independently of the IBD or with the IBD. Peripheral joints (ankles, knees, hands) tend to flare when the IBD flares, whereas axial joints (spine, SI joints, hips) tend to flare independently.

Also wanted to say, it is certainly possibly to have Fibromyalgia AND a type of inflammatory arthritis but they should of course treat the arthritis first before doing anything else.

Good luck!


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## valleysangel92

Hey all, 

So I managed to go see a GP this morning. For the immediate future we are upping my gabapentin as this has helped my pain in the past so there's a good chance upping the dose will help make me more comfortable. I'm going up to 300mg three times a day but have been told that if it's not helping then it can be upped again in 4 weeks time. They also re-issued all my other medications and painkillers so I don't have to worry about running out for a while. 

In terms of longer term, they feel it would be wise to see what happens with my crohns treatment (as there's a question over whether I'll stay on vedo or be switched, I think its most likely my consultant will want me to stay on vedo but I can hope). They want me to talk to my IBD team and see what they think in regard Crohns related arthritis and the possibility of a direct inflammatory response as if thats the case then they may be able to manage me without waiting for a rheumy appointment (waiting lists are 6 months at best, some people are waiting up to a year, a long time to be left in pain) as the IBD nurses and consultants can order scans etc. If they think theres something else going on then they can either order some scans themselves and then refer me on if the scans show a problem, or they can refer me straight to a rheumy. Sometimes this works out faster as if you have a scan that proves a problem you are a higher priority. 

I have in the past thought that it could be fibro + another condition, but the physio I saw yesterday seemed to think that I don't match fibro at all, so I don't really know what to think now. It raised as many questions as it answered. 

Overall I'm quite happy with the outcome. I have been told they may not be able to give me an exact label for whats going on but that they will manage things as much as they can and will give things closer monitoring. I'm happy that they aren't just leaving me in pain and that they are willing to engage in working out whats happening.


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## my little penguin

Glad things are going well 
But unfortunately scans especially X-rays will not show damage until 10 years after Dx of SpA . Other scans may or may not show evdenve of inflammation in the joints even if you have crohns related arthritis that is independent of gi flares .

Hope you can get images quickly but .... fingers crossed you can get into a Rheumo faster than 6-12 months


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## valleysangel92

my little penguin said:


> Glad things are going well
> But unfortunately scans especially X-rays will not show damage until 10 years after Dx of SpA . Other scans may or may not show evdenve of inflammation in the joints even if you have crohns related arthritis that is independent of gi flares .
> 
> Hope you can get images quickly but .... fingers crossed you can get into a Rheumo faster than 6-12 months


This is one of the reasons why we want to approach my IBD team,  as they *should* be able to give an opinion on whether they think there is SpA or entropathic arthritis (that's what my IBD nurse has mentioned in the past) and either adjust my treatment to encompass that or *hopefully * get a faster rheumy referral. I love the NHS and would be lost without it but the system is difficult to get around at times.  I think if my consultant thinks there is something Inflammatory happening then they can put it as a rapid referral but I'm not totally sure.  

It's interesting that you say it takes 10 years for damage to show up.  The rheumatologist I saw before basically told me that if the scan was clear there was no arthritis or Inflammatory process happening and it was fibromyalgia. So, going off everything I have been told in the last few days, it sounds like he should of at least monitored things to see how they progressed? (I did inform him I was having swelling and that my pain was in my joints.  I also told him that I felt better on steroids.) He didn't even pay attention to me having crohns and wasn't really interested in my wide family history of arthritis and of autoimmune illnesses. 

I'm not very familiar on how they reach a diagnosis of SpA or the other Inflammatory types of arthritis before its visible on scans?Sometimes in the UK things are diagnosed by trying a treatment and seeing what happens.  So perhaps they can use my response to biological therapy and steroids as evidence towards those things? 

In the UK,  we are basically taught to go with whatever a doctor says, because the treatment etc is free and because we are brought up with the understanding that we have to be very grateful for what we have because other places don't have it. It took a long time for me to get the experience and courage to question things I was being told.  My crohns diagnosis took five years because I kept being told there was nothing much wrong.  And a lot of the tests they ran were negative (although I did find out later that one of the first scans I had as a teenager showed evidence of some inflammation, no one told me that at the time). I still have a lot of respect for my doctors, and I still love the NHS,  but I am very glad I found this forum when I did because there are times where I question what's being said to me but don't know what I can do about it.  Especially with a system that's so difficult to get around (for example if I want a gp appointment I first have to convince the receptionist that the nurses can't help and that it can't wait for a month).  I appreciate you guys taking the time to reply and give me your thoughts on things.


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## my little penguin

Spondyloarthritis is the broad umbrella term
entropathic arthritis Falls under as a type of spondyloarthritis 
If you have a Dx of crohns then the arthritis is entropathic arthritis 
There are two types of entropathic arthritis 
Type one only flares when crohns flares and is typically not damaging or long lasting 
Type two flares independently of crohns flares and tends to last longer and be damaging at times .

entropathic arthritis can also progress to ankylosing spondyloarthritis (AS) in crohns patients
What to call it AS or entropathic arthritis under SPA umbrella is often debated 
But the disease is the same 
Have they checked you for hla b27?
Folks who are hla b27 positive are more likely to have SpA ( entropathic arthritis )
-and more likely to progress to AS

http://www.spondylitis.org/About-Spondylitis/Types-of-Spondylitis/Enteropathic-Arthritis


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## my little penguin

> Arthritis is the most common extraintestinal manifestation of inflammatory bowel disease (IBD) and can have a significant impact on morbidity and quality of life. IBD-associated arthropathy is considered a subtype of seronegative spondyloarthropathy, with axial, peripheral, or a combination of both joint manifestations. Peripheral arthritis is generally non-erosive and the oligoarticular variant particularly may correlate with intestinal disease activity. Axial arthritis may include inflammatory back pain, sacroiliitis, or ankylosing spondylitis, and is less likely to correlate with gastrointestinal symptoms. While there have been advances in identifying predisposing genetic factors and in elucidating pathophysiology of inflammatory bowel disease, the mechanisms surrounding the development of arthritis in IBD remain unclear. Treatment of inflammatory bowel disease is not always sufficient for control of arthritis. While treatment with biologic agents is promising, there remains a great need for larger, randomized studies to address optimal therapy of IBD associated arthropathy.



From
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3261248/?report=classic


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## valleysangel92

Thanks MLP 

My joints seem to flare up whenever they feel like it, sometimes when the crohns is calm, sometimes adjacent to crohns flares. Usually worst when the temperature is changing or when I've pushed myself too far. 

I've had blood tests which they said were for AS, but I'm not sure what tests they actually did as it was about 3 or more years ago so I can't really remember very clearly. I think they were general inflammation tests rather than a specific genetic test. It should all still be on the computer records though so I should be able to find out pretty easily as long as it wasn't wiped when they updated the system last year.


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## my little penguin

Ds was monitorered by a rheumatologist for a year with frequent appt
Then was Dx with JSpA 
The rheumomwas able to "feel" the inflammation in DS fingers .
Ds officially has JIA type II polyarticuluar arthritis associated with inflammatory bowel disease since his flares independent of his gi flares .

It is also known as juvenile spondyloarthritis associated with inflammatory bowel disease

For ds his JSpA has been much harder to control than his crohns which is why he is on humira every 5 days


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## Maya142

> It's interesting that you say it takes 10 years for damage to show up. The rheumatologist I saw before basically told me that if the scan was clear there was no arthritis or Inflammatory process happening and it was fibromyalgia. So, going off everything I have been told in the last few days, it sounds like he should of at least monitored things to see how they progressed?


So, it is true that it can take up to 8-10 years for x-ray damage to show up for SpA. When there is damage visible on x-ray, it is called AS. AS is different from axial SpA or peripheral SpA or enteropathic arthritis. They are all in the same family, but they are all a little bit different.

Inflammation should be visible on an MRI if it is Spondyloarthritis -- inflammation shows up immediately and does not take time to show the way damage does. If it's a peripheral joint, like a knee, then even an ultrasound should be able to show inflammation (though obviously an MRI is more accurate).

I think I remember you having a nuclear bone scan? Those are not used anymore for diagnosing SpA. They are not very accurate. An x-ray or an MRI is really the gold standard, with of course, a clinical examination.

The rheumatologist is usually able to tell from examining the joint whether there is inflammation. An inflamed joint is often red, warm or swollen. However, in SpA, joints don't just get inflamed, tendons do too. Enthesitis is inflammation where tendons and ligaments insert into the bone. Sometimes you can see swelling, other times, not so much. Right above the knee is a common enthesitis site. The heels are also common enthesitis sites.

The blood test for AS is usually HLA B27 - a gene. If you have it, you are more likely to have SpA or AS. But even if you are negative for it, you can still have some sort of SpA (just much less likely that it is AS).

You also may have elevated ESR and CRP, but 40% of people with SpA don't, so you might not.

For an AS diagnosis, you need damage to the SI joints on x-rays. For SpA, you just need evidence of inflammation - enthesitis or arthritis or both.

Here are the criteria for SpA:


> New ASAS Classification Criteria
> There are two sets, or arms, of the ASAS criteria: the imaging arm and the clinical arm.5 Each set is applied to patients with chronic (more than three months) back pain, the onset of which occurs at less than 45 years of age.
> 
> The imaging arm requires only one clinical parameter plus sacroiliitis (X-rays or MRI):
> 
> The sacroiliitis should show definite radiographic disease at grade 2 bilateral or grade 3 to 4 unilateral (according to modified NY criteria 1984); or
> 
> There should be active (acute) inflammation of sacroiliac joints on MRI, highly suggestive of sacroilliitis associated with SpA.
> 
> The clinical arm requires a positive HLA-B27 test plus two other clinical parameters, such as:
> 
> IBP;
> Arthritis;
> Enthesitis;
> Uveitis;
> Psoriasis;
> Crohn’s disease/ulcerative colitis;
> Good response to NSAIDs;
> Family history of SpA;
> Elevated C-reactive protein; and
> Presence of HLA-B27.


It does place emphasis on SI joints but you can have what's called "peripheral SpA" without having SI joint involvement.

It's all a bit confusing, but a rheumatologist should be able to tell by examining you and hopefully doing an MRI or ultrasound whether your joints are actually inflamed or whether they just hurt. 

If they are just painful, that's called arthralgia and that is part of Crohn's. It does not need to be treated independently of the Crohn's - it should get better when the Crohn's gets better.

Your IBD team should be able to order an MRI but really you should be seeing a rheumatologist. I know that is difficult though, so maybe they should just focus on treating it for now. I would ask to be referred to a rheumatologist at some point - if you do have inflammatory arthritis, you need to be monitored. There is the possibility of joint damage and you need to make sure you are being treated aggressively enough -- and only a rheumatologist can determine the state of your joints.


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## Maya142

So for peripheral SpA, here are the diagnosis guidelines:



> the ASAS criteria for peripheral SpA are to be applied in patients with either peripheral arthritis (usually asymmetric arthritis and predominantly involving the lower limb), or enthesitis or dactylitis.
> 
> In addition, at least one feature of uveitis, HLA-B27, preceding genitourinary or gastrointestinal infection, psoriasis, inflammatory bowel disease, sacroiliitis on imaging (radiographs or MRI) must be present, or, at least two features of arthritis, enthesitis, dactylitis, IBP, positive family history for SpA.


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## valleysangel92

Thanks both. 

I've been chatting to my mum and we can't actually remember the rheumatologist I saw really examining my actual joints..  He looked at my hands and said they didn't seem swollen (which they aren't 100% of the time) and then started poking me, looking at the pressure points they use to diagnose fibromyalgia. Thinking back, we don't think he did any of the checks like flexing joints which my mum had when she was diagnosed with arthritis. When I flex and extend my knees they grind the same way that hers do and she was told this is because of arthritis. I know it could be coincidence but it just got me thinking. The appointment was at least three years ago, so it's hard to remember everything, but I do remember feeling a bit rushed and a bit like he didn't focus that much on the joints that were causing pain.  

Yes Maya you're correct I've only had a nuclear bone scan.  When I was actually having the scan they told me that it looked like there was a little response in my hands and knees but that it needed to be looked over by someone else.  The next I heard was my gp telling me I had fibromyalgia (the rheumy didn't even call me or anything to tell me) and I just assumed that whoever looked over the scan had discounted the response as background radiation as they say that can interfere with the results. I never got the results of the blood tests but assumed that they were okay. 

Another thing we remembered is that when I was 12-13 I was having a lot of shoulder pains.  I went to the doctors who sent me for an x ray, which they told me had come back as abnormal but they didn't explain any more than that. The hospital that did the xray had asked that more be taken to check my other shoulder but the doctor decided it wasn't needed and sent me away with painkillers.  Is it at all possible for the joint problems to be present before noticeable ibd symptoms? Could that xray have shown some side of things to come? I do get shoulder pain, but I've had it so long I just ignore it. 

The past few weeks I have had swelling in my hands every night and my knees most nights. The day before yesterday I was almost in tears every time I put my foot to the floor because my hips hurt so much whenever I had any weight on them or tried to move. 

My esr and crp have been raised in the past but they've always put it down to my crohns and of course I've not questioned that as it made sense. 

When I was younger I got put on NSAIDs a lot (before crohns) and they always made things feel better.  I've never been able to find a painkiller that helped as much as naproxen. 

I feel a burning in my knees and hips quite often too which I've never really given much thought to as it's just something that's there.  I can't describe the relief of holding something cold against a burning joint.  

I will definitely look through everything you've both written and all the links etc and I'm going to use them to form some questions and see what seems to fit me and what doesn't to see if I can make sense of it all.  I know in the past I've been told I need to be careful because I've had a lot of xrays so I would probably be better off with an MRI provided that the metal plate I've recently had put into my jaw isn't magnetic.  

Thankyou both so much. You've been a massive help!


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## Maya142

Shoulder involvement does occur with SpA and is not uncommon. It is also definitely possible to have joint symptoms occur before bowel symptoms.

A lot of the things you've said are red flags for SpA - high ESR and CRP (though that could very well be the Crohn's), pain that gets better with NSAIDs, steroids and Remicade.

Both my girls have had trouble bearing weight when they've had swollen and inflamed knees. My younger one used a knee brace which helped a little bit. She has also had lots of problems with her hips and unfortunately, we have no good solution for that besides steroid injections into the joint (which obviously you can only do so many times). Ice and heat work well for both my girls -- both girls prefer ice, just like you do.

I would recommend getting copies of your records - old x-rays, the physiotherapist's evaluation, the old rheumatologist's evaluation (if it's possible - I know the NHS is different).

The rheumatologist should DEFINITELY examine you - I have never been to one that doesn't look at every joint and check range of motion! And we have been to a lot of rheumatologists, between my husband and girls!

I hope you can request a different one - is that possible?

I would also really push for an MRI of the worst joints. It's especially hard to tell with hips without an MRI.

Also, many women with SpA tend to be diagnosed with fibromyalgia first. Unfortunately, some of the areas where enthesitis is common are also areas there are tender points for fibromyalgia. That's why it's really important for a doctor to examine you carefully, look at your history and do proper imaging. Things like morning stiffness, swelling, redness or warmth in a joint, and pain that gets better with movement and worse with rest are features of SpA but not fibro.

In women, SpA tends to involve peripheral joints more and presents differently from AS/SpA in men which tends to mostly involve the spine. Often doctors decide women have fibromyalgia because they don't match the pattern of AS (starts in the SI joints, ascends up the spine).

My girls were lucky to be diagnosed early because they have an extensive family history of AS, are HLA B27+ and their SI joints were involved relatively early. Plus, the criteria are less strict for children.

Anyway, good luck!


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## valleysangel92

Thanks again Maya! 

My old xrays were done by an old gp practice and I've changed doctors since then, so it might be a bit tricky to get hold of those, but if my memory is correct data protection means they should have kept them and should keep them until I'm 25. But I'm hazy on that stuff. 

I can request a different rheumy if/when I get referred. We are allowed to ask to be seen by a different doctor or a different hospital if we are not totally comfortable with the care that we have received or if we feel like something is being missed. 

MRIs are a lot harder to get than they should be here, all due to cost.  But all the information I've had the last few days should help me put my case forward and show that it really is something I need.  I mean, MRIs are not exactly fun, so why they think people would want them if they didn't feel they needed them is beyond me. 

Thankyou for all the information  it really is very helpful and I'll be making some notes ready for my next appointment.  Thankfully my IBD nurse is usually really receptive and listens to my opinions so it shouldn't be too much of a battle to get them to consider a scan or trialing a change in meds or even just adding a low dose of steroids to see if they can note an improvement for themselves.


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## Maya142

If not MRI's push for ultrasounds. They're relatively cheap and they would show inflammation. They're not as accurate, but if you can't get an MRI then they're the second best.

A steroid trial is also a good idea but only after imaging is done (if they're willing to do imaging).

Very glad to hear that the IBD nurse is on your side. 

Voltaren gel might be an option while you're waiting. You'd have to check with your GI or IBD nurse, but much less is absorbed, so it's not as bad for the gut. My daughter uses it often on her knees. I think it might even be over the counter in the UK? Not sure.

But it might help with pain while you're waiting.


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## valleysangel92

They give ultrasounds away like sweets here, so that should be really easy to get if an mri isn't possible.  To be honest if they take on board what the physio said to me in the way that I think they will then I don't think an mri or rheumy referral should be too much of an issue, it's just a case of me getting my case across and hoping the swelling is there when I go so they can see what I'm talking about and I don't look crazy. The only other thing is working out if I'm actually still allowed them but I'm pretty sure I would have already been told if I wasn't meant to have them. 

Yes we have volterol gel here, I actually have it in my meds drawer. We can by it in chemists and they also do tablets and patches. I've been told gels are fine just not the tablets for the same reason you gave.  I've also got a tens machine which I use on my hips but I have to be a bit careful with that because of my heart going a bit mad sometimes. I've got a heat pad too that usually settles my tummy pain but doesn't always do the same joint wise. I used to use a spray called deep freeze but it sets my asthma off so had to stop that one.


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## valleysangel92

Hey guys,  just a quick update,  

I've just been to see my consultant and we are persisting with Vedolizumab for the time being (infusion nurse will not be amused by that one).  I've had some blood tests done but other than that it's just wait and see what happens now, if the Vedolizumab doesn't work we'll have to look at other things but I'm getting small signs that it may be starting to kick in as I'm needing less morphine and I'm eating better (helped by my jaw healing) plus mainting my weight. 

The big news though is that he thinks I need a referral to rheumatology and I didn't even have to ask.  I just told him that the physio at my gp told me he didn't think my current problem is fibromyalgia related, and he said that joint problems are closely linked with crohns but that if I'm having a real problem with it then it should be looked into so he's writing to my gp to get them to refer me.  

He didn't say when he wants my next appointment to be but that'll get sorted by the people on reception, if I've not heard anything in a month or so I'll ask when I go for my infusion.


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## ronroush7

I hope the new biologic works.


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## valleysangel92

ronroush7 said:


> I hope the new biologic works.


I'm not starting a new biologic, I'm still on the same one as before,  I've got to give it longer to work.


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## ronroush7

Sorry, I misunderstood


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## valleysangel92

Hey all, 

I just realised I totally forgot to let you know what's happening with my heart! When I went in for my jaw surgery, the anaesthetist tracked down the results of all my tests and found that the Echo came back clear. 

The cardiologist has decided that it is likely my elevated heart rate is the result of my multiple health conditions and not something structurally wrong with my heart itself. He is happy that for the time being nothing needs to be done, I could have been put on medication, but that comes with it's own risks and complications and he feels that with me being so young the risks currently out weigh the benefits. He has placed me back in the care of the GP but if the tachycardia starts to interfere with my day to day life or impacts on my treatments then they will instruct the GP on how best to control it. 

There is some chance it will get worse in the future and need medicating or further investigation, but at the moment he thinks that my heart is just having to work harder due to everything else that is going on in my body. He doesn't think there is any correlation with mental stress ( it had been suggested by other doctors that I just got stressed in hospital) as when I had my appointment with him I was totally calm and my blood pressure and breathing rate weren't raised. I do have elevated blood calcium so there is a chance that while it's not having a massive effect in general, it could be increasing my heart rate. 

In other news, I'm now on B12 injections every 4 weeks as I am allergic to the 12 weekly jabs, so I am in discussion with the nurses at the GP surgery regarding learning to self inject as visiting them every 4 weeks is a really expensive (bus fare) and will be very inconvenient when I eventually go back to work. 

My jaw is healing very well, I have been discharged from the surgical team and am just following up with my orthodontist. I have had my fixed braces removed and just have a clear retainer which I wear in bed. I still have some numbness on the left hand side of my mouth, and am still getting some pain there as the nerves are repairing. There is a chance that some of the numbness will be permenant but it's not causing me too many issues so I can live with that. I can pretty much eat what I like now, but I have to be careful with very hard or really chewy things still, as my mouth gets very achey and a bit painful if I over do things. Full healing will take a year or more, so I still have quite a long way to go, but at the moment things are looking good.


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## Cross-stitch gal

Yay that things seem to be working for you!!!  Boy, it's been a long road and still a long one to go.  But, it's about time that something is going right for you!  Sending you lots of hugs!!!


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## ronroush7

Cross-stitch gal said:


> Yay that things seem to be working for you!!!  Boy, it's been a long road and still a long one to go.  But, it's about time that something is going right for you!  Sending you lots of hugs!!!


Amen


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## valleysangel92

Hey guys, 

so after my last update things have been a bit rocky for me, I've been really up and down, going from feeling relatively OK to not being able to move with pain and nausea in the blink of an eye. 

It's really hard to tell if the vedolizumab is having any affect as of yet, as my symptoms are really fluctuating, and we can't tell if that's because its starting to kick in and reduce the inflammation or if its just because that's what my Crohn's has always been like. Most notably, after my 4th infusion i had about 2 weeks where I didn't feel so bad, I still had pain and nausea, but had more of an appetite and the pain was bareable. The 3rd and 4th weeks were horrible though, I was in so much pain I didn't even get out of bed some days which is really not like me. I also had really bad nausea which kept me up at night and persisted even with metaclopramide and cyclizine. 

I had my 5th infusion on monday and had a chat with my IBD nurse about how things are going. She told me that although official data says that they should expect improvement in symptoms at week 14, they are finding that with many Crohn's patients there isn't a noticeable difference until week 24, so it could be another 10 weeks or so before we can tell if this is really going to work for me. She said there are things they can try like moving infusions closer together if need be, but for now my infusions will start being every 8 weeks. She advised I speak to my GP about anti sickness options and tweaking my pain relief and also look at CCUK's information on fatigue. My most recent blood tests look pretty good but its fairly well known that my blood tests don't always reflect what's actually happening, and because of the way vedo works it's quite possible that the symptoms will linger for a little while even if it is working. 

I went to see my GP yesterday and have changed my anti-sickness to prochlorperazine tablets to see if that makes any difference. We added in codine to my pain relief so that i have an intermediate option between paracetamol and oramorph because previously I have avoided taking painkillers because I didn't want to take the morphine all the time and didn't always feel the pain was worth it but the paracetamol doesn't do anything to improve things. 

Ironically today I feel slightly better, I'm unsure if thats because I had the infusion monday and B12 tuesday, or because my body is just trying to wind me up, but I am keeping a symptom diary to see how things progress and try to pick out a pattern. I am thinking that maybe what I'm experiencing is the vedo "wearing off" as I get closer to the next dose, and then kicking in a few days later. In which case I am hopeful that bringing the infusions closer will be an option for me. My IBD nurse seemed to think it would be easily doable but the final decision would unfortunately not be hers. 

My jaw is healing well and I am eating pretty normally. I still have loss of sensation on the left side and it's been quite tender the past few days but nothing too alarming. I think its just the changeable weather we have. I think I'm also coming down with a cold which I imagine would have some affect on it too.


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