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Newbie

Well, another one joins the ranks of Crohn's. Newly diagnosed, was hospitalized for 8 days. Out for 5 weeks, still on medical leave from work and trying to learn about what I now have. Am on prednisone, mezzavant and salofalk. Side effects seem to be dizziness, confusion, lesser brain function. I am frustrated that 2 months ago I was healthy, then thought I had the flu, and now have a chronic disease. Have lost alot of weight, but look skeletal on top and pregnant waist down due to swelling. Always try to look on the plus side, so it's nice that I got to go shopping for new clothes. Just wanted to test the waters here and see if I can get some info, make some friends, and find people who can relate to some of what I am feeling and going through. One thing I just can't get over is my addiction to beef ... I am starved for steak, prime rib .... I literally drool in the butcher. Anyone else like this?
 

David

Co-Founder
Location
Naples, Florida
Hiya spinnychick! Welcome to the forum but I'm so sorry to hear of your diagnosis :( You must feel somewhat overwhelmed. We're here to help you get a handle of things :)

Cravings are often due to an underlying vitamin or mineral deficiency. For example, sometimes people will crave ice for some reason and that is often due to iron deficiency anemia. I've got to wonder if your craving for beef is due to a vitamin B12 deficiency, protein deficiency, or maybe anemia. As Crohn's Disease is characterized by malabsorption and malnutrition and with your weight loss, I'm guessing you're deficient in at least a couple things and strongly recommend discussing being evaluated for deficiencies with your doctor. With your bloating, I also wonder about small intestine bacterial overgrowth which can also lead to cravings.

Anyway, we're here for you.

All my best to you!
 

Angrybird

Moderator
Location
Hertfordshire
Hello and :welcome: to the forum, you have come to the right place for lots of info and support. Have you spoken to your doc about how you are feeling, it could be you are experiencing side effects from one of your meds?

AB
xx
 
Hi and welcome to the group. I noticed that you are from Ottawa. I live in a small town, 30 minute drive south of there. Just wanted to say I know how scary it can be when you are first diagnosed. I found out I had crohns 16 years ago. Since then I have tried many medications and had a few stays in the hospital over the years. Your posting sounds alot like what I have gone through. I was in the hospital last October for nearly 6 weeks. I am also very skinny right now but very slowly putting some weight back on. I am not claiming to be an expert or anything but feel free to pm me anytime if you have any questions and we can compare experiences.
 
Hooray, I have replies. It is so nice to not feel alone. This disease is weird, kind of embarassing .. I kinda feel that it's all about poop and I don't really want to talk to friends and family about it. But with it being new, I think about it every day. My doc has me off work until mid August when I go off the prednisone. I will stay on my other 2 meds long term, and if I flare up he said something about putting me on some kind of drug they use for organ transplant patients. He said my case was quite severe. (I thought it was the flu and waited 5 days before going to emergency ...oops). My specialist is busy and I don't get much time with him, family doctor knows little about the disease so I am starved for information. Have no clue what kind of vitamins (if any and in what dosages) I should be taking. I think B12, Calcium and D are a good starting place. Any other suggestions? And thank you all for replying, as I said it's nice to be able to talk to other who truly understand.
 
Good Mornin' and welcome. Omega 3's and a good multi-vitamin as well. As David suggested the best bet is to get tested. Knowing what needs to be addressed right away is important then you can maintain from there. Lowering sugar intake, cooking vegies to near mush and yogurt helped to keep the bloat down for me. The beef thang....you are not alone. I don't drool, but I Must have. top sirloin with montreal steak spice or tenderloin straight up. yummmmm. I get dirty looks(more like longing) from some of my crohnnie friends as I am able to eat beef and not just bird. I actually find chicken is not my friend. Poop talk is our specialty around here so talk on.... we get it.
 

David

Co-Founder
Location
Naples, Florida
As Dunbar stated, get tested. Supplements should be treated like medication in my opinion. That means don't take them unless you need them and if you do need them, get regular testing to determine what is the optimal dose and delivery mechanism.

For example, you might take 1000iu of vitamin D thinking you're doing yourself good. But it turns out that your vitamin D level is 10 and you would need to take FAR more than 1000iu to get to optimal levels. Or you take 5000iu per day thinking you're doing great but for whatever reason that brand doesn't work for you and your vitamin D level doesn't budge. You never would know unless you were tested.
 
Do I just ask my family doctor for bloodwork to see what my body is lacking? I saw a dietician in the hospital and was told that each case is individual, but my stomach seems to be cast iron ... eating dairy, spicy, cereal, fruits, veggies ... gallons of Franks Hot Sauce ... nothing seems to bother me at all. Mind you I haven't had a "solid" bowel movement in 7 weeks. Not to be gross, but do things ever fully solidify? And also, I know alot of folks with Crohns tend to have multiple urgent runs to the washroom ... I haven't had that yet. Things are more frequent, but def not urgent, and def not either liquid or solid. Am I allowed to discuss this on here? Haha, too late. Sorry. I often forego social boundaries when I want answers.
 

David

Co-Founder
Location
Naples, Florida
Pretty much. Asking specifically for the ones we listed will be beneficial and thereafter you can ask, "And what else would you recommend?"

And yes, you can discuss all that stuff on here. Pretty much nothing is taboo when it comes to the body. And yes, things can fully solidify, but that depends on many variables.
 
I was wondering if I should stop taking all vitamins 2 - 3 weeks prior to next round of blood tests to "cleanse" or "empty" my system so that the blood results can have a true reading of what my system may be lacking.

I'm exhausted today, like dog tired. Usually up at the crack of dawn and slept in til almost ten, then went back for a nap til noon. I had 2 drinks last night and am wondering if that did it. From what reading I've done, alot of people with Crohn's don't tolerate alcohol well. Anyone have any insight on whether they drink or don't drink?

Oh and hope everyone is enjoying the weekend! And how do I get a picture small enough to post on my profile? I keep shrinking it, but am not very tech savvy. Would like to put a face to the name so to speak.
 

David

Co-Founder
Location
Naples, Florida
I personally wouldn't stop but you may want to discuss that with your doctor. I can see where you're coming from and they may have insight I'm not thinking of.

I wouldn't utilize alcohol unless I was in remission and then sparingly at that. Alcohol taxes the body and you want it in optimal condition to help keep the Crohn's at bay.

If you email the picture to me at webmaster@crohnsforum.com I'll be happy to resize it and add it for you. Do you want it below your username, just on your profile page, or both?
 
Picture emailed, you can post on both, and okay, I will stick to cranberry juice & 7up ... my new fave drink anyway. Hope everyone has a happy, flare up free weekend!
 
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