My Crohn's Story

[hunniebunn88]

My name is Ashley, I am 21 years old and live in Canada. I joined this group so that I would have people to talk to when I'm down and out.
I first started getting stomach aches in January 2007, and went in for my first colonoscopy and endoscopy and ultrasounds in February 2007. They noticed a bit of inflammation on the ilium and colon, but disregarded it completely. I was placed on pentasa for a couple months but was then taken off it because the doctor believed that it was most definately not crohn's.
The pains subsided for a couple years, until this year.
I was sent to get ultrasounds done, after being rushed to the emergency room by my mom when I was found on the floor screaming in pain clutching my stomach. They did the ultrasounds, and after seeing the look on the technician's face I knew something was wrong. She kept asking me if my pain was lower in my stomach, and it had been. She then got up abruptly and went to get the head ultrasound technician. I was then recomended to go back to the emergency room as soon as possible to be seen by a doctor. They showed me the ultrasound and I saw that my bowel was extremely inflamed and occluded, which would explain why I wasnt having normal bowel mvmts for over 6 months. I was sent to another doctor and had an endoscopy and colonoscopy today, with not so great news. I have boarderline severe Crohn's disease (which could have been mild if the first doctor had did his job).
I am now taking steroids 3 times a day to reduce the major inflammation and will be weened off of it to go on a less harsh medication.
The thing I am most concerned about this medication is that my weight loss has been up and down for the past 6 months, and now it is going to make me gain a ton of weight. I am already self-conscious about my weight (5`10, 175lbs) and I know I need to take the medications, but I just don't want to gain too much.
Thanks for creating this forum, I know that after reading I will become motivated to keep going and fighting it!
<3

 

[Nyx]

Welcome to the forum

I guess my only advice at this point would be to try and not gorge yourself when you're on the prednisone (hard, I know...been there, done that). I found that if I ate small meals all throughout the day I was better off than eating 3 larger meals over the course of the day. I'm also 5'10" but was down to 117lbs before they got my Crohn's under control. I'm now at about 140lbs and holding steady...lol

Again, welcome and I hope you start feeling better soon!

 

[Crohn's 35]

Hi Ashley, welcome to the forum and being a Canadian girl lol. Prednisone is not fun to be on, and I am surprised at the dosage, 3 times a day? Most people take at a start 40mg and take them all at once. Depending on your dose, yes the steroid can cause moon face but as for weight gain I didnt gain, I actually lost a few pounds because I am very aware of gaing weight. Best to eat small meals more through out the day.

We fully understand about not being diagnosed properly first time, and unfortunately there is not much you can do about the past, just the present and look after yourself for the future. Hopefully you are not narrowing because that can cause obstructions. Chew your foods well and avoid danger foods, like nuts, popcorn, chewy meat. Hope you feel better soon. Where about's in Ontario are you? Hang in there.

 

[terri_ann87]

Hi Ashley,

I know exactly how you feel regarding weight gain with steroids. When I was 1st diagnosed I had lost so much weight that at first it didn't matter to me about the weight increase from steroids, however the second time I was put on them I hadn't lost much and was only 17 years old which is a hard time with out having all the stigma and worry about weight increase.

I'm not sure what you can manage diet wise but I used to try and eat things which took alot of chewing and stuff that is very low fat. For example if I was hungry I would eat raw carrot and cucumber sticks with low fat dips or cream cheese. The amount of chewing seemed to tell my stomach I was full quicker than eating anything else.

If it starts to get you really down then talk to your doctors, mine decided to reduce mine quicker due to the effect it was having on my emotional well-being. Steroids aren't nice, the side effects can be horrible but you have to think that its better than the Crohn's symptoms - not always easy! Believe me!

 

[Astra]

Hi Ashley
and welcome

yes I agree with the others, Pred is a horrible drug, but you have to look at this more positively, Pred will heal you good style, worry about the weight after the course, it does give you the munchies, but be sensible and you'll hardly notice it, I am a grazer, and it helped me through the day, rather than 3 big meals, which just exacerbated gas and bloat, and I would also question the dosage too? the usual is altogether, not 3 times a day, and it will help to take them very early in the morning to reduce any insomnia side effects that you may get.
Don't despair, enjoy the benefits Pred will give you, and any questions, fire away, we're Pred experts!!
lotsa luv
Joan xx

 

[MapleLeafGirl]

Hey Ashley - Another Ontario girl!!! Don't worry too much about the weight, just focus on feeling better. I gained about 25 pounds total while on prednisone, but 15 of it I really need to gain because I was severely under weight. I wasn't too upset about the extra 10 because I thought it gave me a nice cushion just in case I got sick again. I have been off prednisone now for two months and my body has slowly made it's way back to my normal weight without any real effort on my part. Hopefully you will be the same way.