Just Diagnosed with Crohn's….Help?

Just Diagnosed with Crohn's….Help?

Hey, I'm Elise, 21 years old. I'm from Montreal Quebec, and just 3 days ago I was diagnosed with Crohn's Disease after having a colonoscopy and endoscopy done. Luckily, I think I was diagnosed very quickly compared to most of you - I've only been having IBD symptoms since late June. My symptoms included fever, chronic diarrhea, weight loss, occasional vomiting, anemia, night sweats, fatigue, dizzy spells/fainted once, abdominal pain, headaches… the first symptom I had was the diarrhea, which would happen every 3-4 days. I thought it was odd and that maybe I had caught something, or that it was related to my Celiac Disease (yes, I also have that, lucky me ). So for the majority of the time I thought I had a terrible encounter with gluten somehow without knowing. I made an appointment with my GI (since I have Celiac, I already see one annually, but I guess it might be more often now). He didn't tell me much initially, and ordered more tests to be done. Once my blood tests came back and he saw that there was high inflammation and anemia, he ordered that I have a colonoscopy thinking it was possibly Crohn's. So now that I'm diagnosed, I'm taking 3mg Entocort, 4 pills a day. The dosage will be lowered to 3 capsules a day 3 weeks from now and so on.

Lately, for the past week or so, I've been feeling a bit better and mostly I'm just dealing with a lot of abdominal pain, constipation and fatigue. I get SO exhausted, to the point where moving one place to another feels like such a feat. :/ Can anyone tell me if they know about Entocort? Will it help with my exhaustion too? Has it worked for you? My doctor said side effects are very minimal with it. Also… I know this might be a stupid question, but will it be smooth sailing from here on out if I'm on Entocort and I manage my diet? Do you have any tips? I'm kinda frightened, especially after all the things I've been reading about the disease, how many people get surgery, etc. I just want to be okay. How greatly is this going to affect my life? Also, can flares still happen while on meds?

Thanks!~

Hi and welcome to the forum. I can't really answer the meds question. I have had a long period or remission and so much has changed. As far as all the other questions I can't really answer those because everyone is different. I'd say don't let this disease define you. It will effect you at times but continue to live your life. Follow your passions. Best wishes.

Hey Elise,

I'm 22 and was diagnosed 2 weeks ago but have been having issues for years. And although I don't have celliac, I did take an intolerance test which showed allergies to milk, most meats, eggs, and a highhhh intolerance to wheat products etc. So I feel your pain with wondering what the heck to eat. A bit before being diagnosed I started cutting out the foods I know of that cause issues and on the plus side, I have lost some weight, I don't go to the bathroom as much, when I have to go to the bathroom I dont get that urgent feeling, I have less body aches, my hair is even healthier as crazy as that sounds etc. But I still have some issues and have also been noticing how exhausted I always am. I was wondering about it too, but I think because of Crohn's we have issues absorbing the nutrients so we are struggling with being tired, or always hungry, feeling sick etc. I also wonder if maybe its just a flare up as some things improved and other things have worsened like experiencing new pains when I go or in my abdomen.

I did have a B12 shot once and for about 3 days I finally slept through the night and felt rested. I still have more tests to do so for now I'm just on inflammatory meds. I also take a B12 vitamin ( as Crohn's can cause you to be low on B12 and iron( which makes you more tired) and a probiotic vitamin as recommended by my GI.

This is pretty new for me too. But I find a positive attitude goes a long way in these situations. I think in the beginning its hard to adjust to a new lifestyle and with the emotions of being diagnosed. But I think things will get easier as long as we are positive and taking care of our mind and bodies.

Marielle

I was on entocort for awhile but don't recall it helping with my fatigue.

Hi Elise,

I'm also a newbie to Crohn's...I was diagnosed about 5 weeks ago, and like you, thankfully, the diagnosis was only a few months behind the start of my symptoms. I'm 23, and it's definitely a lot to deal and cope with as a young woman trying to figure out life! I'm on quite a different cocktail of meds than you, but I'm also noticing a lot of fatigue. Sometimes, normally in the evening, I will just be sitting around or making dinner and i'll get this wave over me which makes me feel like I need to sleep right that instant. I've been trying to focus on getting at least 8 hours of sleep a night (which normally means planning to be in bed for longer since I'm often awake with pain or needing to use the bathroom). My GI also suggested to start drinking nutritional supplements such as Ensure or Boost and take calcium, and I think those are helping me feel a little more alive just by having all my vitamins in me. I drink 2 boost drinks a day and take 1500mg of calcium through those chocolate calcium chews. It kind of makes me feel like a grandma, but you do what you got to do!

There are days where I feel like this is totally ruling my life, and to an extent, it kind of is right now. I think just staying positive and knowing that you are in control of your disease is really important. I've also come to terms with the fact that I'm going to be tired/not feeling well whether im sitting on my couch all day or going about and living my life, so I've been trying to push myself to be social and LIVE!

Good luck to you, I hope things start to turn around!

Alyssa

I think the fatigue may just be malnutrition. It will slowly get better over time.