Newly diagnosed in Ireland

[Damien]

Hi guys,
As the name suggests, I'm Damien.
Living in Ireland all my life. :redface:

In March this year I attended my GP with stomach pains for which he prescribed some PPI tabs (Nexium). I had also been suffering from random bouts of very very loose BMs but he the GP didn't make much of that at the time.
After a few months without improvement and dramatic weight loss, 88kgs down to 75kgs, I asked for referral to a consultant surgeon GI specialist.
June 13th I had a double endoscopy which revealed Helicobacter Pylori (H. Pylori) with trace of a healing ulcer in the early section of the duodenum, along with suspected Crohn's Disease in the terminal ileum of which a biopsy was take for confirmation. After the biopsy was taken I was sent for a CT scan of the area to find out the extent of the infection. Long story short, the biopsy had caused a massive flare around my terminal ileum and I was admitted to hospital for some quite intensive IV antibiotics (Gentamicin) to keep the infections away along with several other drugs to treat the CD.
I'm now one week out of hospital and tapering off Prednisolone (30mg twice daily, dropping by 5mg every 3 days) and taking Pentasa (2g twice daily) for as long as it takes. The H. Pylori was treated with pretty standard antiboitics (Amoxicillin and Klariger) at the same time and hasn't shown any problems since. :thumleft:
Feeling a lot better just for knowing what it is that is eating me up inside and finding quite a lot of useful info on this forum, it's good to know how other people are getting on with CD and also what treatments and foods work.
Anyway, currently my weight is on the increase and I just can't stop eating, maybe the side effects of the tabs! Also, suffering from insomnia, night sweats and the urge to pee about 400 times a day but again I'm putting that down to the tabs.

Thanks for listening, I'm going to get back to my reading about BMs and loose stools! :stinks:

 

[Nancy Lee]

Hello Damien and welcome to the forum!

Good to see they got you on some good meds right quick!
You are right...the effects you mentioned are usually
caused by Prednisone, but, that being said, it is a great drug.

Wander through the forums, ask questions
and know that you are among friends.

Once again, Welcome!

 

[Gwen pippy]

Hi Damien and welcome

You will find great info here and great people to chat to. Any questions you have just ask away, we are all here for ya. Yup the preds are causing all those side effects but they go when you finish them, as Nancy said they work wonders and the GI's use them to hit the flare hard and then keep you on maintenance meds like the pentasa to keep you from flaring again. Pentasa is a fairly mild drug, it worked for me for along time and doesn't tend to cause side effects in many people.
Start a food/poo diary to help you pinpoint anything that may be eating/drinking that may making visit the bathroom more or even just making you feel uncomfortable.

Good Luck from a fellow Irish eyes

Gwen xxx

 

[xJillx]

Hi Damien and welcome! I am sorry about your diagnosis, but I am glad you found out what was going on with you. It is good to get some answers. And I am so happy to hear you are now doing much better.

It is interesting that you said you flared after getting biopsies taken. I always thought my colonoscopy caused me to get worse. But doctors didn't agree. But after reading your story, I guess I could have been right. Thanks for making me not feel so crazy!

 

[Gwen pippy]

Hi Jill

I agree with biopsies causing flares, I was in remission 2 years and off all meds when GI convinced me to have scope as they felt it wasn't possible. They felt my crohns had taken a negative turn, but it was all clear and then the mother of all flare ups, GI maintains to this day it wasn't the scope but I can't see how it wasn't.

Gwen

 

[Damien]

Thanks for the welcome people, I've been busy reading through the forum getting to know what to expect and recognising symptoms other people mention. The more I read the more I realise I've been putting up with CD for quite some time thinking it was just related to poor diet.

As for the biopsy causing a flare, I watched the screen as the biopsy was taken and the open section left behind did clot over quite quickly, I guess the fact that this part was upset and the surface broken must be the reason for the flare up.

Anyway, I'm still on the road to recovery and starting to introduce some different foods gradually to gauge my reaction, so far so good. :emot-waycool:

Down to 10mg of the preds twice daily from tomorrow and have a meeting with my GI in the evening. I've a list of questions ready and a diary of my weight, meals, meds and BMs since I seen him last. Fingers crossed he'll be happy enough to let me go back to work, sitting at home aint no fun.

 

[littlefreebird]

aww glad you're feeling better, didn't know biopsies can cause flares in some people.
welcome to the site. must still be quite a shock then, glad you have found this forum, it is very useful and you'll find there will be a lot of similarities in other people's stories, even things you thought were a bit strange!
thanks for sharing your story....yess steroids, i remember them well, make you eat non-step, each time i've been on steroids i crave a different piece of food like women do when they are pregnant, last time it was fish fingers, i used to have them for breakfast haha.
anyways welcome again, i'm from northern ireland so we're pretty close lol.
all the best. hannah.

 

[Damien]

Cheers Hannah, small world when you bump into someone that is living within 50 miles or so.

Had my meeting today and the guy was saying I'd had one of the fastest reactions to the preds that he'd seen. Took me down to 10mg once a day for the next week and then 5mg per day for the next week and then stop. Also said I should be good to go back to work which is great as I can't look at the inside of the house for another week. :ybiggrin:

Lets just hope it's a long, long, long remission period from here on!