Just to top it all off!!

[Jenny06xx]

It seems I only post on here when I'm rough so sorry for that.
Been having bad flares about once a fortnight and on no meds to control it apart from vitamins codeine and tramadol.
I phoned my gi in desperation to be told they want to avoid steroids until I have the pill cam in march as they want to see the problems before sorting them so see your gp for painkillers.
I was given more codeine and tramadol which totalled 240 trams in 2 weeks and 112 codeine in two weeks which of course is over dosing badly I know but on doctors advice !
I was also put on antidepressants called citolipram which I refuse to take because I'm only depressed because I'm in pain all the time which of course gets everyone down.
I'm totally fed up of the pain and being sick I know I will have to go into hosp soon to get this sorted coz I can't cope without proper meds it's not fair to leave me in pain ,vomiting green stuff and regularly overdosing on pain meds on doctors advice to stop the pain!
I really think I need to change my gi as he said he would transfer me to a crohns specialist as he is a liver specialist but he hasn't bothered to do it, I really don't know if he knows what he's doing an if I'm getting the right treatment.
What do u think I should do?

 

[BLM]

First of all Im so sorry your going through this difficult time. Many of us have been in your shoes, including myself. It has taken me 15 years to get a diagnosis, and it has been hell. I kept pushing for answers, and that ment switching GI docs three times in a year!! Things are getting better for me since Im being treated right with Prednisone and Remicade..ofcourse come the side effects with those treatments. I too was put on depression meds, and they seem to be helping me...and I totally understand what you mean when you say, your only depressed when your so sick. Well, overall....I was more sick last year than I had ever been...and when I finally said yes to taking the depression meds, it made things much easier to handle. As soon as Im off my last 5 mgs of Pred, Im going to try and cut the depression meds in half.
Overall you have to get a new GI I think....and call your GP the will be able to give you something better for pain and nausea. If it gets too bad, you should go to the ER for some help. Hang in there and I hope you feel better~

 

[ameslouise]

Hi Jenny - Sorry you're having such a rough time. If the doc doesn't want to give you anything like steroids for quick relief, can they at least move up the date of your pill cam???? It doesn't seem like such a great idea to be loading up on the painkillers, but what choice to you have right now??

Hang in there - I hope you can get something for relief soon!

-Amy

 

[littlemissh]

when in march is your pillcam? Its probably not worth changing docs now as you wouldn't get your pillcam done any quicker. Its unlikely you will see another gastroenterologist before then either unless seen privately - you would probably be seen in a week in that case - but you would still need the pillcam.

 

[Jenny06xx]

Thanks for all your replys.

My pillcam is on the 14th of march.
I'm seeing the dietician on the 3rd of march so maybe she can help a bit i asked for my app to be moved forward so I gotta see someone different this time , maybe she will give me the answers I need.
Any ideas on stopping the D ?
I'm already taking tramadol an codeine an still going so I've topped up with loperamide (imodium)
An still going !
It's lucky my kids are off school coz I couldn't get them there like this but then being rough an having them home is very hard lol
Plus my hubby his mum and lots of others all think they know better than me an keep telling me to eat healthy stuff stop thinking that your belly hurts an it will go away!! Yeah right I wish it was that simple!
My husband thinks I want to go to hosp for a break from the house an kids an all , he just doesn't understand I can only suffer so much an the worst place for me to be when ill is in hosp on my own but it's the only way to get proper treatment to get me better .
Ranting over, needed that though lol

 

[MADiMarc]

Dear Jenny,
You sure are going through a rough patch. I can't tell you how to proceed with the docs because I'm in the states & it works differently here. The throwing up green stuff is kind of scary though. Also, taking codeine is not the best thing for Crohnies. It just seems being in that much pain for that long is cruel. Go to the ER if the pain persists, I would.
Wishing you better days,
Michele

 

[AndiGirl]

Hang in there Jenny. I agree that the green vomit sounds scary. I hope you're not throwing up bile. You may want to go to the ER to play it safe. It doesn't matter what they think, you and your health are way more important and too precious to play around with.

 

[Jenny06xx]

Thanks all
I know I have to go to the hosp soon I'm just not managing with the pain at home.
The throwing up starts as food minimal coz I'm hardly eating then yellow bile and froth then dark green foul tasting liquid an I can hardly breathe when the green stuff comes it's so strong!
I've lost more weight going to 7 an a half stone which looks awful.
I haven't much of a choice ATM to go to hosp or stay at home with painkillers well with2 kids it's obvious what I will choose till I can take no more .
Thanks all for listening XX

 

[littlemissh]

Sounds grim, ring your OOH gp to get assessed- you'll have less of a wait than if you attend a&e.
Let us know how things go.

 

[Jenny06xx]

Thanks
I'm going to my gp in the morning to give him an ear bashing!! This isn't my idea of life at all.
He can shove his antidepressants an give me a gun lol
I hope he helps me 2 moz I'll let u know how I get on
Jen XX

 

[littlemissh]

Good luck tomorrow and hope you can get something to make you feel better.

 

[Welsh-bird]

Hi Jen,
Long time no speak! Sorry to hear you've hit the deck again.
Why are they refusing to give you any meds other than Codeine and Tramadol when you've already been dx'd? (I could understand if you were not diagnosed and they were hoping that the pillcam may show something). Must be something in the water down here- I've just be offered antidepressants and refused them too.
Hope you get more luck with your gp tomorrow.
x

 

[MADiMarc]

Oh, Jenn, how frustrating for you. I am so sorry & it does seem that you are getting jerked around to me. Keep hanging on, hon. I hope you find relief.
Michele

 

[KWud]

Oh Jenny

You are having a terrible time. It's even harder when you've got kids to look after! Fingers crossed you get sorted out in March but it seems like a long time to wait!!! Take care love.

Paula
x

 

[Welsh-bird]

Hey Jen
Good to hear they you're GP gave you the answers you needed, although I do agree with Michele that the hospital are taking the p! I fail to understand why they would prefer you taking bucket loads of tramadol and codeine, as opposed to giving you and IBD med, when they are 99% certain it's CD. Mind boggles!!
Are you under the Gwent, and who's your gastro? I should have gone there, but stayed out of trust with my private gastro and her NHS hospital.
Hang on in there hun- hope the end's in sight very soon for you xx

 

[Jenny06xx]

Andrea

Yes I'm under the royal gwent hospital but for clinic appointments I see my gastro at panteg outpatients .
My gastro is called ( I don't no how to spell this lol) dr czakowski in the hospital wards they call him MAC for short lol
He is a posh git ! Very up himself.
I've apparently got an ibd nurse called Allison but I've never used her , thinking about it y would they give me the huge info pack on ibd the radar key and an ibd nurse for ibs lol
Can ibs cause inflammation of the small and large intestine ?
An thickening of the terminal ileum ? Whatever that is !
Would steroids work for ibs ?
I would look it all up but I'm on my iPhone an it would take forever .
Jen XX

 

[littlemissh]

Jen
Steroids do not work for IBS. Thickening of the terminal ileum is where the inflammation causes swelling and therefore makes the bowel wall thicker. Steroids stop the inflammation and reduce amy inflammation already present.This does not occur in ibs. (irritable bowel rather than INFLAMMATORY bowel disease)
The terminal ileum is the last part of the small bowel where it meets the large bowel- a very common site affected in Crohn's- virtually diagnostic.

 

[Jenny06xx]

Thanks littlemish
It's pretty much the same as what I thought.
I forgot to mention I lost 2st unintentional within 2 months I had bloods and they showed a high White cell count and anemia , my stool tests showed no parasites etc , my ct scan showed inflammation of the small and large intestine , I has an endoscopy 4 years ago which showed inflammation even then !
My colonoscopy showed inflammation and thickening of the terminal ileum.
I couldn't eat for 3 weeks in hospital due to the pain it would cause me a couple of hours later (when reaching my bowels in my opinion) so I was put on steroids 40mg pred straight after the ct scan and was on them 10 days before my colonoscopy and then reduced by 5 mg a week till I got bad again at 25mg then back to 40mg now I've been off them since late dec.
Looks like this pill cam is my last resort but I still think I need to change my gastro.
Jen XX

 

[littlemissh]

So why do they doubt the diagnosis then. Is it just no positive biopsies? Surely if they have seen inflammation, have radiological evidence of it where Crohn's is commonly found that should be enough. Your consultant does appear to have odd ideas partic as you are unwell

 

[Jenny06xx]

Yeah the biopsies were negative but I was on steroids at the tome so that could have affected the results my gp said.
My gastro told me he was going to transfer me to a crohns specialist who is one of his colleagues in the same hospital
As he specialises in liver problems , but he never did transfer me and I daren't ask at the moment until after the pill cam .
I also had gallstones and pancreatitis in 2003 when I was 18 and had a cholysystectomy (sp) laproscopic
Which he said would have been linked to the crohns an they were probably my first symptoms.
I'm getting mega confused with all this in my opinion I'm positive I have crohns if I don't then that's a blessing but the only treatment that works for me is steroids so I can't c how it can be anything else.
He also was supposed to put me on imuran or another maintenance drug but said not till after the pill cam now,
So I have to suffer to get a 100 percent diagnosis when I thinks it's already plainly obvious it's crohns
Jen XX

 

[porter89xxx]

Hi jen i have read your posts, you are going through exactly the same as me i think we both need to get different doctors lol, I no it might seem hard right now but is there no way you could go to the hospital and see if the pill cam can get brought foward as they may do that, when i was in hospital they got me an mri scan within 3 days, they may also be able to do other tests on you that could see if there is any active inflammation going on so they have a rough idea, I am think the same as you i have no idea where i stand with my doctors they seem to be treating me for crohns but want the advice on other gatroenterologists, it begs to believe they must not no how to handle someone with ibd or crohns as they need other peoples opinions before they make a diagnoses, i am sick to death of hearin the same severe ibs and just knew i was not right and i am so glad i did go into hospital and that mri scan did come back and show something because i would still be in the same situation with them making me feel like this is all in my head , but i no the steriods have made me feel better and steriods do not help people with ibs and ibs does NOT cause inflammation in the same area where crohns most commonly affects.

 

[Jenny06xx]

Well I saw the dietician an as it was a kind of emergency app it turned out to be the lady I was seeing for 3 weeks in hospital !!
She was great and understands y I'm so confused with my diagnosis / non diagnosis lol

She is writing a letter to my gastro to explain all the problems I'm having an the confusion with what the hell is wrong with me !
I've phoned my ibd nurse an left a message so I can discuss things with her as the dietician couldn't comment on the specifics between ibs an ibd.
Hopefully she will call Monday or early next week.

In the meantime I've decided I'm not staying at home dealing with this anymore so this weekend as soon as I get too much pain too handle I'm off to hospital whether it's through the gp, a an e , or a bloody ambulance!
The dark green vomit just can't be normal an I shouldn't be living or should I say surviving on painkillers .
Thanks all
Jen XX

Ps if u don't here from me for a while u know where I am ,unless I can use my iPhone in there !

 

[KWud]

That's a good plan Jenny, at least if you're admitted you'll get to the bottom of this quickly. Good luck hunny and keep us informed if you can. Big hugs to you.

Paula
x

 

[littlemissh]

I use my iphone in hospital, as long as there is a signal and you aren't on ituu/ccu no-one seems to mind. Make sure its charged!