Just Diagnosed

[Surrealmind07]

Hello everyone!

My name is Danielle and I am 22 years old. I was just diagnosed with Crohn's a week and a half ago after severe abdominal pains led to a trip to the er; which resulted in many tests and a week long hospital stay. I have had symptoms for about the last 4 years (all of it seemed to start after I had a really bad case of mono). I would get crippling stomach pains, anal fissures, constant diarrhea, and I was avoiding more and more foods to try and lessen the severity. I did see a specialist who seemed willing to do some testing, but then decided that what I was going through really wasn't that bad and was probably just IBS. He told me to take Imodium every night before bed. I told my primary care doctor at the time and he said to only take Imodium when I needed it (every day!). It always surprised me telling doctors my symptoms and them acting like it was all in my head or I was exaggerating. So while my trip to the er last week was not exactly the highlight of my life so far, it was bittersweet to finally know that I am not crazy and that there really is something going on with my body.

I am really glad to be able to join this support group. I have so many questions and it is just nice to know I am not alone!

As a side note is there anyone who has taken Prednisone? My doctor has me on it right now and I don't see him until Thursday. I have had some back aches, insomnia (changed the times to earlier and still have trouble falling asleep), leg cramps (helped my eating more potassium), sweats (both night and day), and my most recent symptom red, dry eyes. Are these common?

Thanks! Looking forward to getting to know everyone!

Danielle

 

[Grumbletum]

Hi Danielle
Glad you found us here. Bittersweet is a good word for finally getting a diagnosis. I've just been diagnosed too, been on Prednisolone for a couple of weeks now and am still kind of amazed at being pain free for the first time in 8 months.
Sure does mess with your head a bit, tho. I was wide awake at 5am this morning doing housework. A lot of the side effects you mention are common ones. Have a mosey through the forum: I know there's a thread with a poll on the side effects of Pred.
Hope it gets you sorted out and feeling better.
Helen

 

[Crohn's 35]

Hi Danielle! :bigwave: Welcome to the forum! Many people including myself have had a rough time with getting a diagnosis. Your doctor is correct, only use imodium if you have to. Unsweetened applesauce and bananas, really help slow down the bowels. Drinking lots of fluids really help to flush out toxins and meds. (avoid juices with sugar). Most of us cant eat dairy products or we suffer. I have been on pred off and on for 20 years, and if you can avoid it, it is best. They are bone robbers, and cause other problems like diabetes, and others that escape me at the moment. :shifty-t: The night sweats are from the Prednisone mostly. Keep hydrated.

Some people who have leg cramps use their own remedies, I use Tonic water (soda) and mix it with Cranberry juice because of the Quinine in it. Old fashioned but it works. Eyes are a complication of Crohns too. I too had it is all in your head and I was 32 at the time...moron. Lots of people here to help you along. Glad you are here!

 

[ameslouise]

Hi Danielle and welcome!

Glad you got such a quick diagnosis. What is your long term treatment plan after the prednisone? What dose are you at and are you already tapering off?

I had to chuckle a little bit when you asked "As a side note is there anyone who has taken Prednisone?" There are few here who haven't! Search on "prednisone" here on the forum and you will find thread after thread about it, how it's a lifesaver, and how we all hate its side effects!

There is differing information about taking Immodium with Crohn's Disease so you might want to research that if you are still taking it.

Hope the pred has you feeling better and that you and your docs are working on a med to take over after you are off the pred.

- Amy

 

[CDDad]

Hi Danielle,
Welcome to the forum. Wow- dump that specialist with the "IBS" and "not that bad" attitude. But, I do recommend you find another good GI - and not let your primary care doc try to treat this.
Like Amy said, many (most??) of us have been on Pred at one time or another. It can literally be a life saver.

If you're on a high dose (like 40mg) or higher for a long time (many months), you'll start to see most of the side effects. The most striking to me was always the voracious appetite it gave me. But, it sure works quick, sometimes in a few days and gives a feeling of well being. The tough part can be trying to get off, slowly tapering down over a number of weeks and months. If you've only been on it a short time, you might taper quickly too.

Good luck!

 

[Surrealmind07]

Hello everyone,

Thank you all for replying! I am on 20 mg of Prednisone, twice a day and have been for the past 2 weeks. I begin a long term treatment plan on Thursday with my new GI so hopefully I will be off of it soon! I wasn't sure if Prednisone was something they would keep me on long term, but I am glad to hear it won't be. I has been a life saver but it has thrown off my sleep schedule so bad that I feel constantly tired but can't sleep! The primary care doctor and the other specialist I described before are from the area I lived in before moving home to New York State. Unfortunately, I am now on the search for a primary care doctor here, but hopefully I can keep the specialist from the hospital (he seems really good and he actually listens to me)! I stopped using Imodium after going into the er last week.

I am looking forward to getting the chance to check out some of the other threads! Hope to talk to all of you through out the site!

Thanks!

 

[PnaG]

Good Morning Surrealmind
O the its all in ur head routine, YUP thats the same words we heard. I heard that personally from the time I was 15. My son heard it since he was 8. I think doctors need more education !!

the pred is making my son crazy, we are looking for a new doctor as we speak.
sorry to hear you were in the hospital for a week, glad to hear thou that you got a diagnosis.

you will love the community, they give great info a there is always an ear to listen.
Hope you find a great support group to help you thru the ups and downs
Blessings
Phyllis

 

[Astra]

Hiya Danielle
and welcome

I'm not sure what you mean? 20mg twice a day? Is that 40mg or 2 lots of 10mg?
Sorry to be pedantic but if it's twice a day then this would certainly contribute to your insomnia.
Pred is best taken all at once very early in the morning before food.
I've been on Pred too, it saved my life and I avoided surgery cos of it, it can give you horrible side effects, but ride them out, they'll soon go away when you stop it.
Enjoy the forum, lots of friends here for you
lotsa luv
Joan xxx