Diagnosed just yesterday.. now what?!

[thisisme]

Hello all...
I was just diagnosed yesterday with Crohn's disease. I have active crohns in my left colon, as well as TI. Currently, my bladder and TI have become connected, with a fistula developing between them. I have done a lot of internet research, but just kinda anxious as to what to expect next!? I have a followup with the doctor next week to discuss the results and I guess a treatment plan.
I know everyone is different, and such... but I guess I am just anxious!!! This has been a very long process for me... I have had symptoms and increasing pain for about 3 years now, but the doctors kept leaning towards endometriosis, and it was only a week ago that they realized Crohns might be the answer all along :shifty:
Any advise? tips as to what I can expect from here?! I will take anything! lol.
At this point, I have had a cystoscopy, pelvic and abdominal MRI, and colonoscopy.

Thanks all!

 

[Earnellzwifey]

Sorry to hear you had to struggle so long. I had chronic d for 6 years and they saying it was ibs. I am waiting on my colonoscopy on the 20th to see how much is diseased. I'm currently taking several mess for it and no remission in sight. I hope they can get you under control soon. I know it's bitter sweet, glad you got a diagnosis but hate that it's crohn's. Keep us updated on your treatment plan. This forum is a great source of information from people who understands our struggle. Brighter days to come.

 

[buttons]

Please don't take this advice because my doctor isn't yours but you can ask yours and maybe s/he will agree with mine. Usually we are told to go on the BRAT (bananas, rice, applesauce, toast) diet however, mine believes food has nothing to do with a flare up. Albeit during a flareup some foods can feel uncomfortable.

anyway, you can always send me a direct message if you want to chat. I'm 22 and have had this since 2001/02. I'm not sure what kind of advice you want but I can support you if you need. I remember when I found out I was terrified and felt so isolated.

Sometimes when I get in the situation where people find out about my disease and ask what it is, I just say my stomach is sensitive OR if they get nosey, I'll be all strange and say 'my stomach and colon bleed.' and they are like 'oh.'

Funny story, when I was younger my friend thought Crohn's meant one has to poop 24/7 and feels like they need to. Not to say we don't poop a lot but she literally thought I like felt it all the time which, I suppose, people do when they have a flare.

Sorry if this wasn't very helpful.

 

[CrohnsChicago]

I'm newly diagnosed as well and have had two "flares" since May (currently coming out of one)

While I didn't do a BRAT diet for my flares, I did do clean eating (prepping foods at home with simple ingredients, lots of protein, little oils, no frying or creamy or spicy or carbonated substances which makes me feel 100x worse) and when I felt the clean eating was not living up to its full potential, I would make soy/almond milk smoothies or eat greek yogurt which seems to help my digestion. Thankfully I am not lactose intolerant! But it is important to be gentle to your digestive system while it tries to heal.

I agree buttons, it's so HARD trying to explain what you have to others, I feel like no matter how you explain it, to them it sounds like something simple that will go away after a day or two and can be resolved by diet alone. I am already starting to get annoyed by people and their naive statements. But I have to be understanding of them as well because they can never truly understand how much pain we are dealing with internally unless they have some sort of chronic pain issue themselves.

You will find your way through this. I have found this place to be SUPER helpful. I can ask all the embarrassing questions I want and no one will judge, in fact they experience the same things I do. Makes you not feel so alone in this. And I would just say make yourself as informed about the disease as you can and always know your options.

Wishing you peace and comfort.

 

[thisisme]

Thanks for the feedback everyone! Your words are much appreciated!
I think that is definitely the hardest part... trying to figure out how to explain it to people, especially those with preconceived notions. A good friend of mine is pretty much convinced that I could "blow" at anytime /

Finally met with my GI today and we worked out a plan. Sounds like I will be starting out with Remicade as they confirmed that there is a fistula developing between the bladder and the small intestine... Did a nice battery of tests today, and now waiting on the coordinator to set it up, and the government to approve it! ... Kind of nervous about starting that!
In the meantime she has started me on 40mg of Prednisone a day, tapering down 5mg a week... Kind of concerned about the side effects and everything, but I guess will just take it as sit comes!

 

[CrohnsChicago]

Just make sure you drink PLENTY of water, watch what you eat (you can get SUPER HUNGRY) and limit your salt intake while taking prednisone.

The salt part is especially important. People tend to get "moon face" and/or weight gain on prednisone but I have found as long as I do the three things above with regular exercise, I am okay. It takes a LOT of effort and will-power to fight the hunger though, just warning you lol.

Oh, and the side effects (minus weight gain) usually go away as you taper off so think of them as only temporary if you have any.

 

[thisisme]

Thanks for the advise! I knew about the water, but I didn't know to back off the salt while on Prednisone! I am worried about the "moon face" and weight gain, but I think I will try and take your advise and use my will-power to try and keep control of it!

It's also good to hear that the side effects do taper as the pred starts tapering as well... I am a paranoid person! I took my first dose of prednisone this morning and feel like I am just sitting here waiting for side effects to kick in. I think I need to learn to relax! lol

 

[CrohnsChicago]

Yes, excess salt causes water retention which = bloating/puffiness

 

[thisisme]

Makes complete sense now that you say it. Thanks very much for the tip!