Just Diagnosed - any tips or advice please?

[Lorry]

Hi, I've just been diagnosed with Crohns (I'm 33 female). I've been having issues for years and had huge number of tests done but no one ever thought to check my intestines until during a laproscopy the saw my bowel was really inflamed. Long story short looks like I have crohns! I was put on prednisolone (30mg/day) almost two weeks ago now but I'm not feeling a huge difference to the pain in the lower quadrant area.

If anyone has any tips whether it's what I should be asking my doctor to types of foods to avoid or tricks to help me ignore pain at night so I can sleep - it would be great. I'm still finding my feet and I feel quite overwhelmed by it all at the moment.

Thanks!

 

[suschex]

I'm sorry you are looking at a Crohn's diagnosis but glad they found what has been causing your issues. Have you let your GI know that the 30mg hasn't made much of a difference? Were you given anything for the pain?

I know it can be really overwhelming at first (I was just dx'd in Oct.) but this forum is so fantastic and the people on here have helped so much!!!

 

[Lorry]

Hi Suzanne - I relieved they finally figured out what it is, I was starting to think it was all in my head! the Dr said to give it 5 more days but mentioned moving to immunosupressants. Is it worth trying larger dose of prednisolone first? I really am worried about going on to immunosuppressants. Thanks again for replying to my post !

 

[Grumbletum]

Hi Lorry
And a very warm welcome Yes, you'll probably go through very mixed emotions and it's a big learning curve.
If Pred is working, you usually feel the difference quite quickly but it may be worth trying a higher dose for a while.
But you need a maintenance drug for when you wean off the Pred and that's maybe why the doc is suggesting an immunosuppressant. Have they done any other tests other than the laporoscopy? When are you seeing the doc again?
Re: diet, you could start first of all by trying a low residue diet:. Bland, non fibrous foods that should pass easily through the gut. If that doesn't work, you might need to try an elimination diet as different foods cause reactions in different people. If you pop over to the Diet and Fitness subforum, there's lots of ideas on there.
Take care and give us a shout anytime x

 

[suschex]

Lorry, I agree with Helen...plus she knows far more than I!

It is so hard to answer about higher doses. So much of it depends on your specific disease (location, severity, type of Crohn's, how advanced the disease has become, etc.). You will see quickly on this forum that there are no two of us with exactly the same CD...it is so varied it's crazy! For me, I was on 40mg for 8 weeks without it resolving issues. Looking back, I wish I had been a stronger advocate for myself to go higher or change drugs but I also know that my GI kept me on that while we were waiting for Humira approval so that the little the Pred was doing would continue until Humira started. Also, he said with the severity and advanced nature of my CD he had known that Pred. wasn't going to do the trick. Now, I am 7 injections into Humira and tapering off the Prednisone.

I am 38, female and had symptoms for years as well...no one ever thought to look in my intestines either...luckily (as crazy as this will sound) I happened to go on a very high fiber diet to help my 6-year-old son who was very constipated and it caused my inflamed, active CD to start bleeding...then they looked. That was just on Oct. 10 of is year so I really do understand how you are feeling right now!

It get's better....hugs!

 

[Roxymusic]

Not a prednisone fan

Prednisone has a lot of negative side effects. BUT it always worked for me and kept me with more bowel than I would have had otherwise. 30mg was a lower dose than what I was generally put on. I remember 70 and 80mg for a few weeks before tapering down.

Sleeping on my left side has helped sometimes, if you snack before bed, cut down, if you don't snack, maybe try it in moderation. Having soothing in the tummy might help.

Avoid gaseous foods, like David and cake on another thread here I couldn't avoid the delicious white bean chili that my wife made and I'm paying for that.

I have come to drink rice milk in cereal over cow's milk.

 

[xJillx]

Hi and welcome! My first bit of advice is be vocal with your GI. If pred isn't working, your doctor needs to know. Also, I suggest keeping a daily log. I record what I eat, BM's, and symptoms. It helps to figure out your safe & no-no foods. Also, it can be helpful when talking with your doctor in appointments. Lastly, as far as foods to avoid, we are all different in what we can tolerate. However, most avoid nuts, popcorn, seeds, raw veggies and fruit as these foods can be tough on the gut.

I hope you start to feel better soon. Hang in there!