Just Diagnosed

[queenlizard45uk]

Hello everyone.

Ive been under-going tests for afew months now and today got told I had Crohns. The doctor said he didnt want to say TOO much as the hospital would fill me in.. BUT I dont go to the hospital for another month.

Im already taking b12 and iron tablets and he said I will most probably need injections for the rest of my life for these.

Apart from that - I dont know anything else. Im scared as I feel I should have been given infomation about Crohns or something.

Do I have to be careful of foods or medication I take in the future?

Can anyone give me any info!? I dont feel I can wait a month to visit the hospital

 

[muppet]

Not even a leaflet? Seems very strange to me.

You can try Wikipedia. It's very dry reading but also quite informative. Try not to dwell on all of the possible complications for now as you will not likely experience most, if any of them.

Is the hospital where you go for routine care? Are you talking about a specialist? I'm not fluent in UK medical-ese just yet.

Welcome to the club! Sorry you had to join, but it's not so bad here.

There are many foods that bother one person with Crohn's or another. Your list will likely be very personal (not private, just personal). The most frequent hitters in my experience are:

Peanuts
Popcorn
High fiber or whole grains
Spicy foods
Dairy
Beef

As far as meds, you will want to stay away from Ibuprofen. I'm not sure if it has a different name in the UK. I think it's an NSAID, but don't quote me on that as I often get drug classes mixed up. Google is your friend, but try to corroborate everything you find with at least two reliable sources. There's lots of pie-in-the-sky stuff out there about natural and homeopathic remedies and there is, unfortunately, no dearth of scammers trying to take your money.

As resources go, this forum is a great one! Crohn's is very manageable for the most part, though we all have ups and downs. I think you'll find that your life is "normal" more often than not. Most do.

 

[queenlizard45uk]

Thank you so much for replying!

I have been seeing a specialist at my local hospital while having tests etc. Had a letter afew days ago giving me another appointment.
I went to the doctors this morning so he could renew my iron/b12 tablets and asked him for my results (dont think he was going to give them to me, think he was expecting me to wait for my hospital)

He just said

'the biopsy results have shown you have IBD so you either have crohns or colitis. The hospital will give you more infomation when you see them, but I would like to send you to have another blood test to see if we need to give you b12 injections instead of tablets'

Thats all I was told... so I was kind of in a panic when I got home and told me family. Im only 24 and we all thought I had IBS!

Ok, I will stay away from Ibuprofen. How come it effects it?

Also, (for any woman out there!) I am on the pill, and the last 6 months or so have been bleeding as normal, which the doctor did say was because my body wasnt aborbing it. So what does that mean now!? Obviously Ill have to come off the pill, but is there an alternative?

Im sorry for all the questions. The doctor really hasnt told me anything

 

[muppet]

I don't know the mechanism of ibuprofen causing Crohn's/Colitis inflammation but it can cause inflammation and bleeding in the intestines and can make remission more difficult to attain or maintain.

Questions are no problem. We like questions.

 

[GSO27410]

You need a second opinion! Seems strange that a specialist isn't providing full or any support. I get all my info & support from my GI doc. also, read up on the disease - education & knowledge help you better manage CD. I liked The First Year: Crohn's Disease and Ulcerative Colitis: An Essential Guide for the Newly Diagnosed by Sklar to start.

Good luck!

 

[queenlizard45uk]

Thank you for being so nice Im also very annoyed at the fact that Im moving to norfolk so when I go back to the hospital end of next month, Im going to have to ask for a transfer *sigh*
So fed up.

Thanks GS027410, I shall google that now and have a read.

xx

 

[muppet]

Another vote for a second opinion. And for the reading. Doing your own research and becoming as knowledgeable as possible is VERY important with this disease. There are many competing theories and treatment regimens and you'll need to be conversant enough to advocate for yourself with your doctors. Many doctors seem to only tell you about the treatments they'd prefer.

 

[queenlizard45uk]

Oh dear, the doctors are sounding pretty rubbish when it comes to this, dont they!?

I feel abit silly buying a book and reading all about it, when I dont feel I have it. (if that makes sense)

Obviously i have bad stomachs and pains, and Im constantly tired, but compared to everyone Im reading about on here - I have nothing!

 

[muppet]

It's not that the doctors are all bad, it's that there are some duds out there and you need to be able to recognize when you're sitting with one.

The second opinion will help with the doubt. Some people have very mild Crohn's, and some people's Crohn's gets more severe as they age. I'm going on 28 years with mine and it's much worse now than when I was six.

 

[Mayflower537]

Here is some info from the forum wiki about NSAIDS (includes ibuprofen):

http://www.crohnsforum.com/wiki/NSAIDs?&highlight=ibuprofen

I think some people on here use the patch, or that nuva-ring thing as alternatives to the pill.

 

[StarGirrrrl]

If it were me i'd be ringing up the Hospital demanding to be seen sooner! You have IBD for crying out loud and they are just making you wait, you need treatment and help. If they say no, ask your GP if he can help in getting you seen sooner, or contact the Hospital complaints service asap.

And with results like that, your GP should have called you in.

Sheesh, I thought my hospital was bad!

 

[Artificial]

Hi Queenlizard,

I'm starting to think this must be a UK thing with rubbish doctors...I was told I had Crohns and given steriods but was not told anything about it or the medication!

I also had a Colonoscopy on the 25th July and have to wait until September for another appointment to go through the results...NHS waiting times are poo!

Rachel

 

[StarGirrrrl]

Hi Queenlizard,

I'm starting to think this must be a UK thing with rubbish doctors...I was told I had Crohns and given steriods but was not told anything about it or the medication!

I also had a Colonoscopy on the 25th July and have to wait until September for another appointment to go through the results...NHS waiting times are poo!

Rachel

Well, biopsy results here take 4-6 weeks so i'd say sadly that sounds about right. :yfrown: I have had 3 scopes in 5 years and same time frame on each occasion.

 

[archie]

Hiya sorry you had to join but hang in there it is a bit of a waiting game and the month will soon be in. Try not to get too bogged down by all the info on the net your head will be busted and as someone else said not everyone with crohns has all of the symptoms / complications. The majority of the docs are great so don't lose faith before you start and the fact that they're not in a rush to see you hopefully means that there are no underlying complications. Hope you get the right treatment plan soon and this forum is much better than any info on the net so ask away with all the questions as it's all first hand experience.

 

[queenlizard45uk]

Thanks everyone. Its really nice to be able to chat to you all

Im moving from Manchester to Norfolk in afew weeks so will contact my doctor after my blood test results come back and just ask to be reffered to somebody in Norfolk. Hopefully itll be abit better.

Yeah, My boyfriend agrees that If they dont seem in a rush about me, then that probably means im not that 'ill' (so they say)

One thing that I have been scared about while reading about this is Pregnancy. Should I be concerned? Do we need to be careful with certain things or?
Im 24 and been with my boyfriend for 5 years. Dont think were planning a family 'soon' but just thought id find out details!

xxx