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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.
 
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
 
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.
 
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 :)
 
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!
 
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!
 
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!
 
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.
 
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.
 
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.
 
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!
 
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.
 
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.
 
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 :)
 
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.
 
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.
 
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.
 
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.
 
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.
 
: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?
 
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).
 
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.
 
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:
 
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).
 
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!
 
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!
 
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.
 
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.
 
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 :)
 
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.
 
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.
 
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.
 
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.
 
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
 
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?
 
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.
 
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.
 
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
 
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.
 
:applause: I second that yay! I hope it helps settle the pains. Will cross my fingers that your white blood count stays up.
 
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.
 
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.
 
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) .
 
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... :eek:utahere: !! :)
 
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.
 
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:
 
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.
Click to expand...
 
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.
 
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
 
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:
 
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
 
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...
 
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.
 
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.
 
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 :)
 
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
 
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
 
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...
 
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.
 
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:
 
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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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
 
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
 
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.
 
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.
 
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.
 
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.
 
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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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:
 
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) .
 
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.
 
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) .
Click to expand...

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.
 
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
 
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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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
 
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
 
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:
 
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).
 
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.
 
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.
Click to expand...

Fingers crossed it'll keep making a difference!
 
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.
 
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.
 
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?
 
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.
 
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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