GrrrrrrrrrRRRRRrrRRRRrRRRR!!!!!!!!!!!!!!

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violetcreams

violetcreams

Joined
Jul 22, 2009
Messages
771
I am completely fed up people.

Just to recap, here are the daily meds I'm currently taking:

75mg azathioprine (to be increased to 100mg next week)
9mg budesonide
9 x 500mg pentasa
3 mebeverine
2 calcium
Folic acid & multivitamins

I've been on the aza for just over 5 weeks now (on 75mg for a week). My GP sent me to casualty for bloods last night as she was concerned that my sore throat may be due to a low white blood cell count, caused by the increased dose of aza. BUT.....it turns out that my white cell count is still elevated ('mild neurophilia'...the normal range for neutrophil count is between 2.00 & 7.50. Mine was 9.35). I can't believe that I'm taking all of these crappy pills for nothing!!!!!!!! I didn't need a blood test to tell me that I have inflammation though. I have pain, nausea, fatigue & I can't eat & I can't stop going to the toilet. I have episcleritis in my left eye & I have the lovely Crohn's rash on my leg.

I don't understand why these drugs aren't kicking it. I start my new job on Monday & I really don't know how I'm going to cope (with no food & a belly full of loperamide I suppose). Do you think that the aza could still start to work? Is it too early to tell? I spoke to a pharmacist yesterday who said that she would've expected *some* therapeutic benefit by now. She said to give it another 4 weeks & then seek a second opinion with another gastro Dr.

I've checked out the NICE guidelines on IBD & I know that some serious fertility destroying meds are on the horizon if the aza doesn't work for me. I don't want to be robbed of my chance to have a child but I can't go on like this.

AND seeing as I'm ranting, I'd just like to add that I think pentasa is the single most pointless thing in the world, unless you like to watch all of your hair fall out, GGGRrrrrrrr, I am so peed off.

Apologies for ranting. Any advice would be good to hear.
 
... Ah there it is :)

Oh no! Not sure about pentasa but the azathioprine can make your hair fall out.

Sounds like your Gastro-doc is playing it very safe, but it's not getting your disease under control. Also there is a warning that pentasa may make symptoms worse on this website: http://www.crohns.org.uk/Docs/2/Pentasa.html

Personally, I would be shouting very loudly that you need to get the disease under control quickly, even if that means you go on to the dreaded prednisone, or try Elemental if you haven't already, to get you stable which would allow the Aza to do it's stuff - which is reasonably safe during pregnancy. Especially given your new job - and good luck with that, your a braver woman than I!

Azathioprine can take 12 weeks to start working, and you are still on a relatively low dose - 150mg is more usual but it does depend on your body weight. It isn't really a rescue med, it is really only good at maintaining remission.

Did you contact your gastro doc about the rash, hair loss/etc?
 
Hiya all. Thanks so much for responding. I'm having a :( day

Beth, my hair has been falling out for about 6 months now so I dread to think what will happen now the aza has been added to the mix. My gastro isn't interested in discussing the hair loss. He insists it's the disease & not the meds & *that's that*. It's a load of old crap. Not wanting to stereotype, but my gastro Dr is an elderly male & he doesn't give a f**k about my hair. The rash & episcleritis have come & gone for years & he's seen them since I've been under his care over the past year. He even has photos of them in my file. He says they're part of the inflammatory disease.

I feel like I've really stressed how important it is for me to get back to work & to not to be sick every day but I think I'm losing trust in him. I told him last week that I'm losing hope that I'll ever get this thing into remission. He says "you will, you will". So I told him that I've felt dreadful EVERY DAY for well over a year & that I am fed up to the back teeth with this stupid process of waiting for relief from medicines that never ever work. I want my life back. I've been patient for so long & I'm getting to the point where sometimes I feel like I want to deck him (that's punch in northern UK!! & I didn't actually say this to him!!). He responded by increasing my steroids again & increasing the aza. Thing is, I quite like him as a person & I'm worried that if I ask for someone else, I'll end up with someone dreadful. I think he does listen & respond to what I say, with the exception of the hair loss (GGGGRRRRr, when I think about that I do want to boot him for somebody different....but who's saying they'd be any better?). I'm trying to give the aza a chance.

I can't take pred. I tried it not long after I was first diagnosed but it made me feel really jittery & freaky so he took me off it & prescribed budesonide instead. I've been so upset today. Not starting this job on Monday is not an option. I'm reassured that I'm not alone in this awful awfulness & you lot are ace. Thanks for listening to my rant-a-thon.

I've not tried this elemental (not even sure what it entails but I'm going to look into it when I've finished typing this). I'm currenly living on thin soups, rice pudding & jelly. My face looks like an animated skull.
 
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Ok I might be being a bit daft here .....

Elemental diet. Is this something that is prescribed? Or can it be purchased? Or would I put it together myself?

I have asked my gastro Dr about whether trying a liquid diet would help & he said maybe (but no further advice. He tends to tell me to eat low residue...specifically porridge (bleurgh!!!), mashed potato & well cooked carrots).

Thanks all.
 
Elemental 028 Extra Liquid is a complete replacement diet drink, and you can only get it by prescription. Developed here in Cambridge inconjuction with SHS nutrition. The idea of it is that it is absorbed in the first bit of your small bowel, and so rests the rests if you see what I mean. Whilst it isn't horrible, as such. You do need to be comitted. Seeing people around you eating nice things whilst you sip cartons of strongly flavoured puke aint easy. However, it does seem to work. No nasty side effects. And hopefully gives your bowel time to recover and start healing. Worked for me anyway.

Info here: http://www.shs-nutrition.com/products/elemental_028_extra_liquid
 
Hi VC, I am sorry that you are having such a hell of a time. Please try to relax a bit about the job, not to minimize bills, mortgage, medical bills, but the more we stress and internalize the more we hurt. I just had a brief cameo back to the workforce after being unemployed for just over a year. My direct supervisor was a total mellonhead and we did not see things the same way at all.

So, long story short, in terms of finances I am completely screwed, we made two of the six mortgage payments we need to get back in good standing. Life is hard enough these days with the weak economy and we all have to battle health issues to boot. Try to hang in VC, it has to get better at some point.
 
Oh thanks Beth, that's really helpful. I wonder if my GP would be able to prescribe this? Or would it need to be my gastro Dr or a dietician? I am really keen on trying to regain some control using diet. As for seeing other people eating gorgeous food & getting jealous....I've been living like that for ages & if I was prescribed this, I'd want to give it a fair crack of the whip. Is it difficult to get the medics to agree to prescribe this (expensive??)?

By the way Beth, how're you doing on the methotrexate? Hope it's going well for you.

Thanks Jerman....Sorry you're having a rough time too. I know, I'm kind of panicking about the poxy job ) : I'm quite good at panicking! Sorry to hear about your goon of a boss. My last boss was a horrendous woman who I won't miss one tiny bit.

Hi Shantel, I've been meaning to say that I had a look around your website & your work is beautiful! You have such a great space to work in too (so much neater than my work space, heehee!).

Thanks for the communication - it really helps.

Love.
 
Your GP might if he's brave. My route was gastroenterologist -> dietician -> GP who finally at the end of the chain did the prescribing. After about 3 weeks of the Elemental I moved on to the LOFFLEX diet.
Ah yes crohns.org.uk again: http://www.crohns.org.uk/Docs/3/The Dietary treatment of Crohns Disease.html

I've not seen the dietician again after the initial (private) consultation because she was soo crap.

As for the methotrexate. I seem to be surviving. It wiped the floor with me again this week for pretty much two days. And then I was all bouncy for a couple of hours yesterday and this morning until I ran out of energy within a couple of hours. Oh well. As long it does the job.
 
Hiyah, long time no log on!!!!!!! Struggling in new job. Surviving on immodium & rice pudding. Energy levels absolutely atrocious. Azathiorpine / steroid combo STILL not getting this thing under control. Gp won't prescribe elemental diet (or similar) so got to get in touch with gastro consultant. Gp says "it's too specialised...." Life is challenging. Hope you're all doing ok....haven't had time to read posts but will catch up soon hopefully. Love. xx
 
Hi Violet,

Sorry you are feeling so frustrated. I just wanted to share with you about my Azathioprine experience. I am 120lbs maybe less at the time(54.5kg). It wasn't until I was on 150mg/day that my body responded. That was the highest dose I could be on for my weight. I had tons of hair loss, but not from my meds...It was from being so malnourished from vomiting. My hair has grown back to it's pre-loss state. Try taking Biotin, it's suppose to help with hair loss. Good luck.
 
violetcreams said:
Ok I might be being a bit daft here .....

Elemental diet. Is this something that is prescribed? Or can it be purchased? Or would I put it together myself?

I have asked my gastro Dr about whether trying a liquid diet would help & he said maybe (but no further advice. He tends to tell me to eat low residue...specifically porridge (bleurgh!!!), mashed potato & well cooked carrots).

Thanks all.
Click to expand...
Asking a doctor for advice about diet :( . Look up the SCD diet, it's a lot of work, but most with crohns find relief with it. Diet is a lot more important than you probably think. Try to restrict the processed foods as much as possible. No soda, dairy, and even try to limit your grains. Diet is so important I can't stress it enough.
 
I'm not getting better. Had to come home from work early today because the pain is so bad. WTF? I shouldn't be like this when I'm taking all of these meds. Seeing GI on November 5th. Feeling very down about this whole thing. Finding it difficult to believe that it'll ever get under control. What a load of bollocks.
 
bjeffrey said:
Get of fthe meds
Click to expand...

...which is really irresponsible advice to someone who is on a glucocorticoid steroid prescribed by a doctor. Your qualification is, exactly?
 
I third that opinion....We are not doctors, just advise people what has worked for you in the past. It's the safest way to help.
 
Hi Violet Creams - and all you Crohnies who have posted responses... I was about to post on the forum a bit of a vent, and then I discovered that you had written exactly what I am feeling.

I have felt like crap since May and I want my life back. I started out on Budesonide, then onto Pentasa while tapering the Bud... everything got worse so increased the Pentasa, and now back on 9mg per day of Bud with 50mg of AZA.

Since the AZA I now have the spectacular vomiting to contend with - we're talking hands and knees in car parks while my stomach tries to invert itself... I'm sure passers by think I'm one of these binge drinking ladettes. (I don't drink.. come to that I dont eat much any more either).

My hair is falling out in clumps - my mum says it hardly notices, but I KNOW, and my parting is getting HUGE.

I am always tired, always have tummy ache, and continue to have totally unreliable BMs. I would quit work tomorrow if I could, and it's a lame job that is totally non taxing, but I feel like I can't cope with it. I used to be a real high flyer in a massive corporation, I have two degrees under my belt, and now I am totally useless.

My husband is wonderful, but I dont think even he can get his head round it, and he can't fathom why I am so miserable all the time when I have always been the life and soul of the party.

My consultant is perfectly nice, he's not unpleasant, but he says very little, and I get flustered talking to him... I can have a laugh with my family and on this site about weird and wonderful poo, but you should have seen me trying to explain my farts that take a detour without actually referring to my lady bits - I was mortified...

So, Violet Creams, I am TOTALLY with you. I am gutted that all this time later I actually feel worse rather than better, now I dont just shart at random, I also ride the vomit comet on a regular basis, and to top it all am going bald... I am so depressed with it...

The only plus is I have lost loads of weight having been on the chubby side most of my adult life, but right now I would happily be fat and healthy....

Sorry - I should be offering support, but the only support I spose is that I know where you are coming from - I promise you there is at least one person in the UK who is feeling mega grumpy like you...

LishyLoo
 
I know Beth! He's just so damned serious though!

If I was to explain to you guys, I would just say, "Well, I needed to do a big fart, but I was in company so I clenched my bum cheeks to try and keep it in, but blow me the bugger popped out of my vag as loud and triumphant as you like! WTF???"

With him though, it's "Well, I umm, well I needed to pass wind.. and I tried not to...ummm... and well.... it still came... but not from the erm...ummm usual place"

At this point I am blushing like a raspberry and he is completely deadpan as he explains in a monotone voice that this is in fact a rectovaginal fistula. and very common with crohn's.... what I need is for him to smile kindly and say "oh you poor thing, that must be very distressing for you...here's my magic wand to make it go away"....I hate my life these days!

You can't trust a fart because it often has liquid company, but you can't even hold it in anymore because it just diverts... its so NOT sexy!
 
Ah f$%k you have me in hysterics now!:ylol2: :ylol2: :ylol2: :ylol2:

How do they do that. I mean keep deadpan. I'd be blushing red as a beetroot too just thinking how to get you out your misery without upsetting any sensitivities. I guess they must have training. Lots of training!

I dont know... laughter the best medicine! this has right cheered me up - methotrexate last night and it wiped the floor and swept the yard with me before dumping me in a skip this time.

I know it's not funny. It was bad enough when my perianal fistula 'diverted' a fart. Boy that smarted! and bled. I'd be freaking it with a RV.
 
Thank f**** for you people, you understand this horrendous thing. Seriously, thanks so much for your responses. Went into work this morning but was in absolute agony so had to come back home at lunchtime (was also awake at 4am, feeling like somebody was ramming a knife into my guts). Am looking like a really lame choice on the new employee front. See consultant on 5th. Plan on taking my partner in with me because I feel like I need someone there to back me up. Or something.
 
Well I know they certainly can take some time to start working. Like 12 weeks for Aza, whether that's inclusive of the ramp up to full dose (~150mg) I'm not sure.

You're taking your partner to not only back you up, but remember stuff that you think is important to mention, and to remember what the consultant has said.
 
Thanks Beth. I took him in with me for the first couple of times, when all of this started, but since then I've been going in on my own. I suppose I'm feeling similar to how I did in the beginning at the moment. Quite vulnerable and not at all in control.
 
By the way Beth, how's the methotrexate working out so far? Are you taking the tablets or injection? I've not been spending much time on here since I returned to work so forgive me if you've posted about this already!
 
Hi Shantel. There hasn't been any mention of anything really. I think the way it usually goes over here is: try anti-inflammatories, eg pentasa, then try steroids, then try azathioprine (in women of child bearing age)......and then I think they tend to go with methotrexate before trying to secure funding for one of the anti-TNF's. Not sure though. Will make sure I get some answers next week. I need to get well and to regain some quality of life but I don't want to be forced in to a decision never to have a child. I know that with methotrexate and the anti- TNF's, you have to stop taking them at least 6 months before you try to become pregnant. Gaahhhh, my head's mashed with all of this.
 
violetcreams said:
Quite vulnerable and not at all in control.
Click to expand...

Definately take him. Talk to him before hand so he knows what you want out of the meeting, and make sure he knows it's his job to speak up! He'll probably be less stressed than you and able to remember more than his first name... I'm sure you know what I mean.

As for MTX I'm on the tablets: 20mg on monday nights and 5mg folic acid on friday. This is week 8 of the cycle, and I can really feel my joint aches being modulated by it. By monday I my jaw aches like hell at the slightest crunchy thing and neck is complaining it's full of gravel. Yet today, it's lovely! Doesn't seem to make much odds with my guts. I did wonder if it was upsetting me somewhere as I got some very wierd stabbing pains, but it didn't come to anything this week... Except, my lungs might be complaining about it instead. I have a chest X-ray tomorrow to confirm - Yay for the NHS eh! and if that's positive for methotrexate pneumonitis I'm off it. If it's good old fashion inflammation, frig only knows. I also have asthma so I'm predisposed to it doing pulmonary badness. I will be sooooo absolutely brassed off if I have to come off it just as it seems to be doing something.
 
And the news is... chest x-ray was normal, so no mtx pneumonitis. Struggling to get my wheezing under control so dont know what doc is going to do tomorrow. Ah well. Least he emailed me the Good News!
 
Hi All, hope you're all doing ok? Super quick post - off to work in a minute. Saw consultant yesterday. Got to have an MRI of small bowel before Christmas and a colonoscopy after Christmas. Asked about elemental. He prescribed 'fortijuice'. Haven't tasted it yet but reckon it'll be pretty vile!! xx
 
Fortijuice? Who makes up these silly names for things? Hope you are feeling okay and work is good - I think you were starting a new job?
 
Hi! Quicky hello!!!! Well he gave me a choice between 'fortijuice' & 'fortisip'. He said that 'fortisip' is milky. VOM. So I chose 'fortijuice'. Job going ok ta. Working in psychological therapies ( not enjoying the commute at all though....immodium for breakfast every day, yuk). Hope you're both ok. Lish, what happened about the bruising???? U ok??? & Shaz, hope you're getting a bit more sleep Hon. xx
 
Sleep? What's that? ha ha.
I have Fortisip and it's actually really yummy, though I am getting a bit fed up with it now. It does taste milky, like a milkshake, but you may like it as a change from the juicy ones as it may feel more like a meal. The chocolate is delicious!
 
Does anybody know what the small bowel MRI scan entails? I've read conflicting info on this. PLEASE tell me it's not a picolax situation? Thanks all.
 
I've had an MRI scan of my abdomen before - it involved drinking no prep solution, just quite a large amount of a contrast dye which tasted rather like aniseed. A small injection of buscopan and a contrast dye into a vein in the arm was also required right before the scan was taken. I wouldn't be too worried, it was a really non invasive test and there was no discomfort thankfully. :)
 
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Hi Violet,
I had an MRI which I think looked at everything but expect they use similar techniques?
I had to fast for 12 hours prior and then they gave me quite a lot of this chalky stuff to drink over 1.5 hours before i went into the scan. It tasted fine but the volume was difficult especially followed by 2 big glasses of water!
The stuff didn;t make me feel sick or anything though. the weirdest part was the drug they injected to stop any muscle spasms while in the scan.
Apparantly it can temporarily mess with your vision and I remember having a grand old time trying to text dad to say i was ready to be picked up because my eyes wouldn't focus on anything close up. This went away in a couple of hours.
 

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