Bloating and other side effects?

[NatashaChampion]

Hiya, I just wondered if other people suffer from bloating as much as me?

Throughout the day after I eat my stomach gets bigger and bigger. I have changed my diet so that I am eating a lot more healthy and eating foods that shouldn't make my stomach bloat so much. However by the evening, once I have finished dinner I am in so much pain because my stomach has bloated so much that it even becomes hard to breath and I have to lay down!

Do other people suffer from this? Is there anything I can do to stop it from happening?

I also keep getting crap in both my hands? I have never heard of anyone experiencing crap while on all the medication but wondered if anyone else gets this?

Also while I'm writing just thought I would ask about what happens after steroids?
My consultant has just sent me away for another two month of trying to taper down the steroids but I don't really know whats going to happen after?
Will I be put on different drugs or more investigation?
I have been diagnosed with Indeterminate inflammatory bowel disease! will this mean that my treatment will be different?

Sorry for all the questions but any help would be great x

Thanks in advance

 

[Amanda89]

Hi Natasha,

Just to double check , do you mean cramp in both your hands? I've had the exact same problem with bloating and cramp in my hands when I've been on steroids, unfortunately i can't really advise much as I was a bit stumped on how to fix it as well. With the cramp in my hands I found it's only went away after my Infliximab infusion on Friday, but by the point of that influsion a lot of my joints were sore and hands and feet were getting cramp. Hopefully someone else can give you guidance. I did speak to someone who said they used to go to the gym which helped bring down their bloating, but I'll be honest i'm really rubbish with exercise and I was so tired all the time that I just didn't have the energy to go.

I guess after you finish steroids it will depend on how you're feeling in relation to what treatment you might be put on. They may start you on Aminosalicylic acids like Pentasa first of all which is drugs for mild to moderate crohns and also used by most as a long term drug to maintain remission. They might also look at immunossuppressants when the Aminosalicylic acids aren't enough to keep you well and the next stage after that is Biologics which are Infliximab and Humira in the UK.

I'm slightly confused by your diagnosis, does that mean that they're not sure whether its Crohns or Colitis?

 

[NatashaChampion]

Haha yes i was supposed to say cramp not crap! im exactly the same, going to a gym really doesn't appeal to me and by the time i have done all the stuff i do during the day i dont think i would make it! I get so tired!

And right, thats is a lot of different options for after. I just dont like the way they have sent me off with steroids and not explained anything about the future! To be honest i cant tell if the steroids are working or not!

Im just as confused over my diagnosis:/ i dont know whether it means i have got both Crohn's and colitis or they just cant make up there minds! Whenever i look it up there is always mixed results and it only tends to talk about children!

 

[Amanda89]

yeah I'm not surprised I would be confused as well. The problem is half the time after your diagnosis they tend to just leave you to it until your appointment with the specialist. Oh and you might get a leaflet or two about it lol.

If you want to learn more about the medication heres a link about it all from the UK Crohns website which is really useful. http://www.crohnsandcolitis.org.uk/...s/Publications/Booklets/Drugs Used in IBD.pdf

It's always good to read up on stuff so that when you next see your specialist you're not caught off guard by him suggesting one drug when you might have seen another drug that you think might work better for you.

Have they given you an IBD nurse yet? I'm sure I seen one of your posts before where they hadn't given you the IBD nurses contact details yet.

 

[NatashaChampion]

Thanks for the link i shall have a read of that now

Make it even more confusing when they spring a word like indeterminate at you and you have no idea what it means!

And nope i havent, i didnt know i was supposed to have one really! Nothing was ever mentioned about it when i went to see the consultant. He wasn't very helpful to be honest x
What do they do anyway?

 

[Amanda89]

Its basically a hotline you can phone if you have any questions about your IBD or medication. Mine are really good if I ever leave a voicemail, one of them always phones me back by the end of the day. I got the number for mine through my specialists secretary.

 

[NatashaChampion]

That sounds like a useful service! I have got an appointment with my GP on the 20th so i shall ask her if she knows anything about it