Not very creative...so my story?

Hi guys

I have been reading this forum for a few weeks, as I just wanted to see if people existed who were in the same position as me and actually understood what I'm going through without being so dismissive!!

Basically I started getting ill last year, around August I noticed it, however now I think about it, it was ongoing before that but I never thought it could be anything for concern.

I went doctors, had blood tests, they saw there was inflammation because of a white cell count or something, I was refferred to the special doctor.

Had an endoscopy and colonoscopy, and theres inflammation in my stomach and my small intestine. He said it looks like crohns disease. However after biopsies were taken some suggested it was crohns, others didn't (whatever that means) So I'm almost in Limbo?

It took almost 8 weeks after my initial camera test etc to receive a letter saying I was to take Pentasa twice a day, working from 1mg to 2mg under doctor supervision. And then another appointment would be made with the special doctor to see how I'm getting on.

Now, I've been taking it and don't see it relieving my symptoms at all to be honest, maybe thats why if I forget to take it I'm not so bothered.

But my symptoms seems to be getting worse occasionally, I can't even tell what triggers it, which is really frustrating.

I'm currently in Toronto for 2 months with my husband, staying with my uncle as I was getting a lot of stress back home in England. I thought a break would be a good idea.

Now, I have been here 3 weeks, before I came I'd put on a lot of weight (I think when I'm stressed, it always happens..!!) So the Doctor was suprised when I said I hadn't lost a 'dramatic' amount of weight which is common. However since I've been here and relaxed a little, my eating habits have hardly changed but I've lost 5Kg in the space of little time. A bit worrying.

Sometimes I have an appetite to eat, and sometimes I don't want to eat at all, because I don't want to deal with the reprecussions.

My dad has colitis, and doesn't want to accept the fact I might have crohns...as this can sometimes be hereditary? He says I shouldn't worry until the doctor has confirmed it is crohns.

Oh I dont know, sometimes I try to explain to my husband and hes really understanding about everything, but I see how supportive everyone is here, and I suppose I just wanted to talk to like minded people who deal with what I deal with?

I look forward to getting to know you all!!

Sharon

:welcome: Sharon! My you are far away from home! Toronto, I know very well, used to courier down there, not sure I could do it now lol. Your dad is right to wait for the results because it may or may not be Crohns. Having said that I have Crohns, my sister has crohns and a brother with Colitis. So yes it does run in families and test can be done over and over and missed. I took a full year of every test. Pentasa is a mild drug, and can help but most people take 2 pills 4 times a day! But your doctor isnt sure so you have to wait and see. There are a few avenues to go, and many meds to help. Glad you are here and learning about this disease, lots from your hometown too!

Ask any questions, someone can give their experiences too. Welcome aboard~

Hi Pen

Thanks. Yes Toronto is very far from home. I came here last year for 2 weeks and enjoyed it so much, I decided as I wasn't working to do it again but for longer!

I know my dads right, but my symptoms seems to be getting so much worse. I hate the waiting game, for you to get an appointment and get answers, its the most frustrating thing.

I dont have pentasa pills? I have these sachets with granules in them. Is there any difference?

Thanks again This forum has been keeping me positive through these tough nights out here, and I've already learnt so much, even my husband is now beginning to read it with me!!

It's the same stuff, but I think the sachets are 1 gram not 1mg?

To be honest, if you had ANY biopsies come back as Crohn's you would think that would ne enough for a definative diagnosis, since one of the features of Crohn's is it has skip lesions (meaning you have some inflamed patches mixed in with clear patches).

I hope you get some answers and treatment soon. Pentasa is good for stopping you having a relapse, not so good fpr treating active inflammation. Having said that, it's unlikely they'll prescribe you anything stronger till they are sure it's Crohn's.

Hi Sharon
and welcome fellow Brit

Just to concur with others!
Maybe you will have to wait and see, then be prescribed the appropriate meds.
In the meantime, hope you find some comfort here with us.
lotsa luv
Joan xxx