• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Diagnosed today!

Hi there!
Im new to the group and new to Crohns. I have been suffering for months with agonising pain, dashing to the toilets and scary blood in stools! Finally after my MRI showed up the inflammation among other symptoms (ulcers, swollen legs with rashes and lumps) I have finally been diagnosed. My specialist is lovely however i have had to do all my own research on Crohns and currently know very little about it. I have started taking steroids today (Budesonide) which are just making me emotional and more tired than i normally am. ANY guidance, support and tips would be appreciated. My friends and family looked at me gone out when i told them what i have and have been comparing it to IBS.
Thankyou :smile:
 
Hi,
IBD consists of a group of different disorders associated with the bowel and Crohn's is one among them. I guess the internet would have already helped you with the basic information ( And scared you as well). MY suggestion would be that this disease is manageable and it can be maintained with having a check o your diet, has your food choices has to change and start a fitness routine and have a happy mindset (since stress triggers your symptoms). Follow these simple tips and you can be the boss of your disease. I understand making adjustments in your lifestyle a bit difficult and will take time. Moreover its a trail and error process.

All the best :) Cheers!!!
 
Hi Lulu1989,
Sorry to hear that you are joining us because of a Crohn's diagnosis but this is definitely the right place to be to get advice and chat to people who know what you are going through!

It's definitely a lot to deal with and get your head around - and not something that most people can understand easily when they are not dealing with it themselves! It's not uncommon to have people confuse IBD with IBS (I've actually tried to stop saying IBD when I tell people as this seems to be such a common mistake!) Still even when people understand on one level that it's different you'll still find that they may try to identify by telling you about their IBS symptoms or just a regular tummyache. I suppose it's nice that they are trying to find a way to relate but I think that most Crohnies do a bit of a mental eye roll. I think the best thing is to smile and nod and when necessary, thank people for their advice on diet or lifestyle or whatever it may be (not that those things can't be useful for helping Crohn's but they are rarely the whole answer) and tell them that you do need to be very careful with your treatment because Crohn's can cause some very serious complications and become debilitating. Not that it always does at all and not to scare you but I can see that you've already had to deal with some frightening and difficult effects of Crohn's and knowing that this is different from IBS and being able to express that to people is important.

Glad that you have a good specialist. A supportive and responsive GI is, I think, key to treating this disease effectively.

There is lots of information on the internet about Crohn's but when researching you need to remember that there are different types of Crohn's (stricturing, fistulizing (and sometimes both) and purely inflammatory) and that patients can have different disease locations. Basically though it's useful to read other people's stories and understand what can be involved with Crohn's, we need to know that we may never experience some of these things ourselves - our Crohn's journeys are all different. And similarly our responses to treatment vary from individual to individual too. With all that in mind, forums like this one are an amazing resource for learning about your treatment options and getting support and advice for dealing with Crohn's.

Budesonide can cause mood swings so know that you are not alone in that but hopefully they will get you feeling better. There's a support sub-forum for people on prednisone/entocort here - fyi entocort is another name for budesonide.

Keep updating us!
 
Wow thank you both so much for your helpful replies! Im still a little overwhelmed by everything and with the help of my steroids still very emotional. I guess its nice to know whats wrong and hopefully i wont get so worked up when people invite me out for a meal, that part is always hard and it makes me nervous as i may not be able to eat anything on the menu or worse, endulge and then have to run to the toilet! Im back in hospital in two weeks time for more scans to see if the steroids have helped if not they may need to be more invasive in there searches :(. Thanks again xx
 
Good luck! And let us know how you go with the budesonide - there are lots of people here on the forum who know all about the emotional rollercoaster that is being on steroids and dealing with a new diagnosis. So know that there are people to talk to here if you need support! :ghug:

I hope the scans show good improvement. Have your doctors talked about maintenance treatment with you?
 
Thanks everyone. Still struggling with the emotions it's been an odd week. I'm generally a happy girl and it's been years since I have shred tears but this week it seems to be everyday! The doctors have not mentioned anything? I'm not even sure what these steroids I am taking are to improve? Will they make the pain go away? And the bleeding? I'm really suffering with lumps on my legs and very dry skin also, could they help that? It's a very lonely disease so far. X
 
Have you been given any guidance medically at all? I'd ask to see your specialist or your GP so they can go through things like medication side effects and why you are taking it.

Check out Crohns & Colitis UK they are a great organisation, they have lots and lots of fact sheets which should help you and your family.

Also check out this section of the forum, Entocort is the US name for your drug :)

Never be afraid to be assertive over your IBD and make people near you realise it isn't IBS!
 
Steroids will certainly very often have you feeling all kinds of emotions and not like your normal self at all. It's good to remember (and for those around you to know too) that it's in large part the meds making you feel like this and it should get better when you stop taking them.

If this course of steroids works for you then it should reduce the inflammation in your intestines which should mean your symptoms of pain and bleeding improve.

Not every Crohn's patient will respond to every treatment though. We're all individual :) It's possible that you might need to go on a course of stronger steroids (prednisolone) or try a liquid diet for a few weeks (Exclusive Enteral Nutrition) as this also works to reduce inflammation in the gut and helps your bowel heal. Or you might need a maintenance treatment to help you come off the budesonide? Did your doctor mention any of those treatments as a possibility?

The lumps on your legs sound like they are an extraintestinal manifestation of Crohn's disease (there's a subforum here where people post specifically about those, although you can discuss them anywhere on the forum too of course!) - possibly Erythema Nodosum? You can read a bit about that on the forum wiki here, on the CCFA website (along with other Extra Intestinal Manifestations) here, and there's more information and some photos here

I hope you start to feel better soon and know that while this disease can feel very lonely you are not alone. Come and chat on the forum as much as you need to. There will be lots of people here who want to offer you support :ghug:
 
Living with Crohns is definitely a learning curve. You will have to take your meds and watch your diet and FOLLOW UP WITH YOUR G.I Doctor AND TELL THEM EVERYTHING AND GET AN MRI ON A REGULAR BASIS. But also very very important is that you take an active approach at educating your family so they can understand. You should learn about the digestive system and Crohns disease.
With diet everyone is different, you will have to sample everything and monitor how it affects you or whether you can eat or drink it at all. Most of us cant handle raw veggies but the nutrients are beneficial to control crohns so I recommend investing in a good juicing machine. But no matter what, water is your best friend and drink it as much as possible, warm is even better. The softer the food is then the easier it will be to digest. The tougher it is the harder it will be to digest. Food like mashed potatoes, steamed veggies, noodles, hard boiled eggs, fish and soup are soft and good to eat during flare ups. Foods like chips, raw veggies, some fruits, red meat, popcorn, any kind of whole seed (including the ones in strawberries) and nuts are tough so not good to have during flare ups but some people can tolerate in moderation on good days. Then theres certain ingredients like sugar, spice, salt, oil, milk(lactose) that should be avoided in high volumes, some can tolerate in moderation. A rule I use to judge if what im eating is good for me then I look at my poop:dog: if it floats its bad, if it sinks its good. Since its harder for Crohnies to get all the nutrients we need its good to have multivitamins and meal replacement shakes like Ensure. In time you should know your body very well and living with Crohns will become second nature.
Be positive dont stress and take good care of yourself. Good luck!
 
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