Hi everyone

I have had crohn's for around a year now and don't know to much about it.

I have been in and out of remmission, on and off steroids and pentasa.

Now i am on 200 mg of azathioprine, but i still have loose stools 1-2 times a day and when i need to go, i have to go as soon as possible overwise it gets painful.

And the smell is so foul and so embaressing, with wind as well it is so foul smelling and again with that if i try and hold wind in it will get quite painful.

Don't get me wrong it is nowhare as bad as it gets when it fully comes on, but it seems it never fully goes out of remmission, it calms down.

In general i am quite a nervous person and get easily embaressed, before the crohn's i would always worry and be on guard around groups of people (even family), now with the crohn's i don't really go out much because of the embaresment.

I have an appointment next week, another thing is my last appointment when i told my consultant about still having loose stools and so on.. he had a right go at me trying to blame me and saying that i have not been taking the medication, which i have i never miss it, then he started saying that i will have to start coming in every 6-weeks and stay on a drip overnight if it carries on, now i feel nervous about telling him, i feel like telling him everything fine.
Don't know what to do, any advice would be great please. Thank you

Hi Cam. I've had Crohn's for a year now too and am on the same meds as you. How long have you been on the Aza? My GI says it takes about 3 months to become fully therapeutic. I don't think I could cope with a doc who shouted at me Sheesh, does he think Crohnies want to feel the way we do??! Do you get on with your GP? Maybe you could talk to him/her. It might be possible to get referred to another consultant.

Yh i have been on azaphioprine for 6+ months and mostly they have stopped it from being full on flared but it feels like they just calm it down a bit,
but with still some symtoms.

It maybe that i may need the stronger treatment because as it is now, yh it is not really bad but it aint that good either, i just want it to go fully
into remmission and have abit of a break from it lol.

Like i said i have not really been able to go out because of it actually the only time i had it in full remmission was for about 2weeks when i was on a high dose of
steroids and pentasa but as soon as i started to come off them and go on the azathioprine symptoms slightly came back ie loose stools, foul smell and some pain.

The only thing is the next stage of treatment that i know of is spending a night in hospital on a drip every six weeks and that does not sound to fun lol

Hi there I'm on the same med's as you and have the same experiences I was advised that it takes about 6 months for the aza to work, I've been on it since last year, with little relief.  When your GC said about the drip is that through dehydration or are they thinking of putting you on the Inflixmab which is an infusion which you will have to go into hospital for?  

I know where you are coming from about going out and having a social life!  Like you I find it incredibly embarrassing to and it is very hard to explain to friends, family and peep's in general.  I'm also single and dread trying to explain it to a new partner!  It's defenently not a walk in the park lol.....  

As for the meany GC I would speak to your G.P and see if you can get referred to another hospital?  

Good luck x

Yes it is that infusion thing, and yes i think i may talk to my GP about a different consultant.

I don't know much about treatments but i heard of an injection, does anyone know if the injection treatment is better than azathioprine or any anternatives to the infusion.

Thank you, Cam

Hi,
I have had crohn's diagnosed since 2005.  I am currently going through a flare at present, on the picolax today in prep for tomorrow's scope, can't wait.
Anyways, I have been on the infusion your talking about its called infliximab, where yes you do have to go into hospital but not overnight, mine was always a day case! Also they have another injection which is a self injectable adalimumab or humira - easier to say.
Also if your consultant isn't being all that supportive either speak to him/her and find out what the problem is or go back to your GP and ask to be referred to someone else if there has been a break down between you and your consultant you need to see someone else.
I have been on aza since diagnosis, and personally don't think much of it on its own! But for some reason it seems to be the drug of choice, it works well alongside other drugs - such as infliximab, I have to say I was in remission pretty much the whole time of being on infliximab since 2007, the group of drugs called Anti TNF are very good but you have to meet certain criteria to qualify!
Hope this helps
Gayle

Hi again. Last time I saw my GI he said he had applied to the medical board for me to go on Humira. Think it takes some time to get approval cos it's so expensive. The Remi ( Infliximab ) infusions are every 6 weeks I believe and take about 2 hours. I've heard good things about both - apart from potential side effects, but most of the drugs are scary IMHO.

thanks for the replies

Aswell often i feel really tired and abit ache, it is kind of like when you are run down with a cold but without the blocked nose. Just wondering if this is just a symptom of the crohn's and if anyone else gets this.

Thank you everyone

Yes, fatigue is a symptom, especially when you're in a flare. You might see if you can get your B12 levels checked.

Hi Cam,

I've been on the Humira it took about a year to get on it because of they require funding for this drug it is very expensive, it's an injection pen which they teach you to do yourself and is administered every two weeks (don't be too perturbed by the side effects).  I met a number of peep's on it that said it was a god send and said that their conditions had gone into remission.  I on the other hand did not fare so well with it, it compromised my immune system too much and I became very poorly so they took me off it, I'm on the aza until they can get the funding for the Inflixmab.

I suffer with extreme fatigue and yes it is one of the symptom's of Crohn's and half the med's they prescribe, also if you are on the aza they should be doing regular blood tests which would check your B12 levels and plate letts....

Katherine

Yes i get blood test evrytime i have an appointment.

I have an appointment next week with the IBD nurse, i have told her this stuff before and she just says ok, which doesn't really mean much to me lol

I will tell her next week about still having some slight symptoms and see what happens from there.

I would prefer not having to have the infusion or injection, but if it gets rid of the symptoms and gets me back to normal, then i will be up for it.

Thanks again everyone,
Cam

Yes i get blood test evrytime i have an appointment.

I have an appointment next week with the IBD nurse, i have told her this stuff before and she just says ok, which doesn't really mean much to me lol

I will tell her next week about still having some slight symptoms and see what happens from there.

I would prefer not having to have the infusion or injection, but if it gets rid of the symptoms and gets me back to normal, then i will be up for it.

Thanks again everyone,
Cam

sorry about it posting twice lol

another thing which is confusing me, is when it really flares up then the blood tests show a very high white blood cell count. When i
have said about the slight symtoms that are still there but when i have blood test the white blood cell count is in the normal range, I don't get how i can still have symptoms but my white blood cell count is OK.

Thanks,
Cam

Hey Cam,

My blood counts are the same aswell.  Iv had crohns since I was about 20, im 320now and every blood test I have had comes back normal.  I have been told by my GI that this is quite normal, not every one who is having a flare has a bad blood count. Strange I know

Cheers

Me to, been suffering bad over the last couple of days and couldn't take any more so went to hospital yesterday, they told me the inflammation markers on the bloods they did were good and showed minimal flare up but I can tell you it didn't feel minimal and was sent home.....  Have you been tested for the HLA-B27 factor?  Not hundred percent sure if that is a factor of Crohn's but I have A.S (arthritis) which is linked to Crohn's and was diagnosed with the Crohn's having a colonoscopy because they couldn't check my bloods for it.......    

Meilfisk are you really 320 lol