My story (celiac and crohn's)

[Jessika]

Hi guys I'm new here and newly diagnosed as well, just the other day in fact. I have had low energy and everything since freshmen year of high school and my health continued to get worse until I had bleeding from my bowels and I couldn't stand without having to use the bathroom within seconds. So I had a colonscopy done and it showed I was fine or that's what my dr. at the time told me...unfortunately I believe he lied to me as my new G.I said that it's in my records that I have a positive crohn's/ celiac diagnosis but I was never told this..it makes me mad in fact. Anyway, I continued to bleed etc and could barely get out of the bed and then my mom and dad took me to the ER over something I thought was unrelated - abdomen distention. I'm a regular size 26 inch waist and right now it's at 37 ish inches from fluid retention alone..I was told I had a defiency in protein and that was causing it. I'm still so unsure about all of this. I have started taking natural things to help for instance chlorophyll from alfalfa leaves to help my stomach heal as well as aloe vera and it does seems to soothe my stomach. I was also told I was anemic. When I was there last time for a week or so they gave me blood, my blood was at 8.5 and now it's up in the 10s somewhere and I hope to get it higher. I am worried about my malabsorption problem. I want to get to feeling better and I want this distention in my stomach to go down..has anyone had this except for me? My G.I acted like it was rare to see and I feel quite alone. I was also diagnosed with celiac that apparantly that too had been in my records..again that makes me angry. Anyway, can anyone relate?

 

[phear]

Wow that sounds very familiar. I have not been diagnosed yet but my stomach is very bloated all the time and if I eat my bad trigger foods such as onion, ice cream etc I can swell 2 pant sizes bigger in a matter of minutes. I also have a protein malabsorbtion problem and no energy at all, so I feel your pain.

Hope u feel better soon

 

[Jessika]

My swelling almost literally happened over night it seemed, that's why we were so concerned! It actually got worse in the hospital! They gave me solumedral through IV and some cocktail for my stomach. Unless I'm seeing things my swelling has went down 2 inches from 37 to 35+. I measured as soon as I got up before eating as well, and I DID urinate a large amount too.
I hope you can figure out what's wrong! I'm still somewhat in denial myself. They put me on some meds here:
Sucralfate
Prednisone 30 mgs
Asacol
Prevacid

 

[Angrybird]

Hello and welcome :bigwave: Whilst I have not had this problem personally i have read others posts from people who have so your are not alone, the meds you have listed should get things calmed down for you fairly quickly (especially the pred) so fingers crossed you will be feeling better soon. Keep us updated when you can.

 

[Jessika]

Yeah my stomach has been behaving really well for me. I also have cut out gluten entirely and I have been for a few weeks now! I am excited to return to school Monday I will keep you guys updated. I have a G. I appointment this Wednesday so hopefully all goes well! I hope I don't have to have b12 injections!

 

[Angrybird]

Oh I am pleased things are going well, the injections are not too bad (just like the jabs you get at school). It is worth getting your B12 checked as it is common for us crohnies to be deficient in this and it can lead to fatigue and problems with moods etc. I think it says it all for this disease that you are actually looking forward to going back to school the return to some kind of 'normalicy' is wonderful. Will keep fingers crossed for wednesday.

 

[Jessika]

Thanks!