Got a diagnosis finally!

[x0lou0x]

Hi everyone,
I don't know if anyone has been following my posts but I have been suffering for over a year with various symptoms and my GP thought I had IBD. I went to the Countess in Chester and they gave me a diagnosis of IBS, my GP didn't agree with this and referred me to Leighton where they dealt with me really quickly and diagnosed me with Crohn's ileitis last week. I have been put on 3mg of entocort for 3 months (on a reducing dose) and then my consultant wants to put me on pentasa and I also have to see a specialist. I have realised now I need to start taking better care of myself in terms of diet and exercise so I am joining the gym and I am going to make a real effort to not eat comfort foods when I'm feeling poorly as I often do (it only makes me worse in the long run). Anyway just want to say thanks for all the advice people have given me while trying to get a diagnosis.

 

[cosmic dave]

Welcome to the club lol

 

[StaceyQ]

glad you finally got a diagonisis x

 

[rollinstone]

Hey Lou, sorry to hear you got the diagnosis of crohn's but glad you know what's going on with your body now, I don't want to question your doctors but have they mentioned any other meds? The reason I ask is because when I was first diagnosed I didn't want anything to do with Aza or any other "harsh" meds, I was on and am still tapering off prednisone, but my point is, I wish I had started the Aza sooner because if you tolerate it, it can really help put and keep you in remission. Alternatively, there is LDN, which was something I wanted to try but my GI said he has to follow procedures and LDN isn't widely enough practiced here. Anyway, hope you feel well soon

 

[x0lou0x]

Hi Joshua,
I really am not good with medication or anything like that I just know what the doctor told me, is it possible to suggest medications to the doctor or do they not like that? I will research the meds you have suggested, the consultant said he thinks I have IBS as well and that diet will help so I am hoping to feel better from changing my diet but obviously I need meds too

 

[rollinstone]

I'm sure the doc will suggest something adequate, it's just I don't want you to go through the same trouble I went through (not saying you will) but I wanted to taper off pred without other meds and see how I did just on the SCD diet (I thought diet would be enough) sadly after months of not improving, I started imuran (I was on pentasa before starting imuran), now I only wish I started it sooner because I feel like I'm in remission, still got a bit of nagging pain every now and then but my bowel habits are probably as healthy or healthier than they've ever been, i go once in the morning upon waking and not a dreaded toilet visit anymore (it used to be haha). Point being, I attribute this to the imuran, it did give me nausea for a little while when I started the higher dose but to me it's worth it to kick the crohn's ass

 

[x0lou0x]

It definitely sounds worth looking into as so far I don't feel much better for being on the steroids, thanks for the advice

 

[xSophiexx]

I would DEFINATELY bring up different meds because Pentasa is a really mild drug. i have read on here before that some GI docs compare it to giving Aspirin for a brain tumour .. wont hurt but probably wont do much good either. Hopefully entocort will bring down the inflammation but to begin with you probably need something a bit stronger to maintain remission i.e. Azathioprine LDN or the big boys Infliximab or Humira. there are lotsunami of diets that claim to help e.g Paleo, SCD etc have a look at the diet sub forum. Sorry your in the club now but at least they can now help you!! ps my doctor always takes my suggestions into consideration and is happy for me to suggest things xx

 

[Karen]

Goood to hear that you finally got the HELP you were looking for ... Now that your here and all we are all here for you !!!!

 

[StarGirrrrl]

I'm sorry to hear it's CD but glad you got a diagnosis. If you don't mind me asking how did the diagnosis happen?

 

[x0lou0x]

Hi Star Girl,
My colonoscopy showed patchy erythema in my terminal ileum and my consultant said even though the biopsies didn't 100% indicate crohn's and my MRE was "normal" that he was giving me the diagnosis of crohn's and medicating me as he said it happens all too often that people are sent away with no diagnosis and come back in 2 years with worsened symptoms and could have been treated the whole time. I think i was lucky with my consultant as i imagine other consultants would not give treatment for inconclusive biopsies!

 

[PVail]

Well I m so glad you got diagnosed , at least now you have something that there is a treatment for . Well i suppose its a start of a new journey for you, so hope all goes well and keep us posted.

Peter

 

[Laura Dawn]

Good deal, hope you can get the help you need with the proper DX.