New to forum...not new to crohns!

[andreagillespieuk]

Hi everyone,

My name is Andie i'm 34 and new to the site. I was diagnosed with crohns in 2003.

I guess you could say i'm at a very low point and i'm looking for some advice and some laughs from people who can relate. I'm very lucky i do have a really supportive partner and family and they do their best to listen to my frustrations but speaking with people who really know what you're going through somehow makes you feel not so alone.

I've tried most medications which have failed and i'm currently on mercaptupurine which has been working fairly well for me but recently the toilet trips are on the up the pain although not mind numbing is my constant companion.

I've seen my specialist a few times over the past few months and they are insistant that the crohns isn't active (based on blood results) and they have put the pain and toilet trips down to underlying IBS something which i don't agree with.

Last week i went on holiday to Tenerife and flared up badly loose motions vomiting pain so bad i couldnt stand up straight ...needless to say my holiday was ruined and i only really saw the inside of the bathroom in my hotel room!

I have an emergency appointment booked in for tomorrow but i just feel so flat like i'm not being listened to everytime ive been in recently ive just been told my bloods are normal and the crohns isn't active and i have a feeling im just going to be told that again and if it happens this way i fear i may just burst into tears.

Does anyone have any advice on how to deal with the doctor without getting upset i feel like i'm losing my mind :-(

Many thanks
Andie

 

[muppet]

If 6MP was working but now is not, you may need a blood test to check your metabolite levels and see if your dose ought to be altered.

Have you made any changes in your diet since being diagnosed with Crohn's? Medication alone is rarely enough.

 

[andreagillespieuk]

Hi Muppet,

Yes i've become very familiar over the years with what i can tolerate my diet is very healthy, if not bland!

I've been struggling for some time now, i recently moved town and subsequently doctors and i NEVER get to see a consultant, my previous specialist was fantastic and i'm thinking of changing back.

I guess i tend to just go with what the dr says i'm not really sure about what medications are available and sometimes i feel i'm put on something simply down to the cost to the NHS.

How can i really make the most of my appointment tomorrow what do you think i should be asking, i guess i feel like i need to be more informed.

 

[Angrybird]

Hello and welcome to the forum.

Out of interest what dose are you on for the mercaptopurine? When you see the doc tomorrow I would be very firm and say you want things looked into properly, basing disease activity purely on bloods is rediculous, I have previously had fairly low inflammation levels to then have a scope confirm a stricture...... When was the last time these type of tests were done to see how things were looking inside? Where in the abdomen do you get the pain and is it sharp or like a constant ache?

AB
xx

 

[andreagillespieuk]

Thank you Angry bird
I'm on 100mg 6MP and have been on it for about 6yrs now. The last colonoscopy i had was with my previous dr that was in April and at that time showed the crohns wasn't active, so this new dr now says well your colonoscopy was fine and your bloods are fine so there is no indication that the crohns is active. Last time i reminded him that this disease can change so quickly that a colonoscopy could be fine one week then awful the next but he just didn't take it on board. He suggested the way forward was to look at pain management and refered me to the pain clinic which was about 3/4 months ago and i still haven't heard anything.

The pain started as a really sharp pain, like being winded down my left side that sorta moved along the bottom of my tummy i described it as like having a sharp edged brick in the my lower tummy i couldn't stand up or take deep breaths and coughing, sneezing hiccuping and just walking jiggled the brick sending shockwaves of pain and nauesea through me.

I've struggled in the bathroom, i get a sharp ache in my stomache like i need to go urgently then struggle to pass anything more than bloody mucus

I just have this feeling of dread that nothing will be done tomorrow and christmas is gonna be rotten as much as i hate colonoscopies i really think i should ask for one to be done
x

 

[Angrybird]

Please keep us updated on how things go tomorrow hn, be very firm with the doc, bloody mucus is certainly not something that they should be disregarding.

 

[andreagillespieuk]

Thanks very much you've made me smile i will let you know how it goes x

 

[Sean B]

Good luck today Andie - I'd recommend requesting a colonoscopy - like you say it can change rapidly - I had one done, nothing found, then not so long afterwards a perforated small intestine. The one problem with Crohn's is the whereabouts of the problem area of the intestines - usually around the small/large junction, the ileum and it's difficult to detect with a standard colonoscopy because the test doesn't travel far enough to look at this area. The blood tests are a very good indicator, monitoring white blood cell count is a very sensitive test and would flag any abnormalities, it's also a fast and efficient way of telling if it's active, although it can't beat a biopsy for definite diagnosis. Chin up and I know this is very difficult to do for a mum at christmas, but just try and relax

 

[andreagillespieuk]

Thanks Sean, i really appreciate the support...i'm not a mum tho lol i'm getting married next year so perhaps the nippers will follow!

So i've just got back from the hospital...what a morning it was prtty much as i figured it would be...the dr started with so all ur tests came back normal...er yeah the tests you did in April! i explained i had come in due to what i think is a flare up explained all my symptoms and he just went back to ur previous test results were fine i attempted to challenge and was met with the response of 'what do you want me to do about it' which just flumoxed me...i said reassess my meds do a colonoscopy look at whats going on for me now....and get this i explained the pain i was getting was flooring me and he said well traditionally crohns patients dont really get pain???!! in the end he said well i suppose we could do a colonoscopy and i'll put you on steroids in the meantime, steroids have never really worked for me and the side effects i got from them previously were probably worse than the crohns..i was even left with a crushed vertabra in my spine...would he listen...no so i've come away with steroids and a 4 week wait for a colonoscopy....i think its time to change back to my old specialist :-(

 

[muppet]

I can't imagine the dose and duration of steroids you'd need to end up with crushed vertebrae. Ouch.

I agree that you need a new specialist.

 

[andreagillespieuk]

I lost an inch in height muppet....i was not happy about it...i'm a shorty as it is!!

 

[muppet]

I've also shrunk somewhere from a half inch to an inch, but no crushed vertebrae that I know about.

 

[Angrybird]

Sorry to hear about the struggle today hun, the only small positive I suppose is you will be getting another test to check on things inside. Out of interest with this course of steroids and previous ones were you given a calcium supplement?

 

[andreagillespieuk]

Hi Angrybird,
I originally took the steroids when i was 1st diagnoised...i think i was told to take calcium suppliments which i did. I wasn't told this time but its only a 6 week course.

I just emailed my old specialist IBD nurse and she got straight back to me so i'm going to email my new specialist and request to be referred back to my old hospital, it does mean travelling for appointments but i think its worth it,I had a fantastic rapport with my old specialist

 

[Angrybird]

Good for you, I hope you can get to see you old doc soon.