Just diagnosed with Crohns and lost.

[Nicoleex3]

Hi my names Nicole. I just joined this site in hopes of finding out what I need to do to get my chrons under control. My doctor hasn't been a real help and wasn't able to give me an idea of what I should and shouldn't eat. I feel completely helpless and have had horrible cramping and pressure in my stomach. I was in the hospital yesterday and got no answers. Any answers will be greatly appriciated.
Ps: what is something I can do to get my energy back?:sign0085:

 

[Astra]

Hiya Nicole
and welcome

Well, firstly it would be a good idea to have all your bloods done, your GP will help with this, this includes CRP, ESR, FBC, FER2, FOLA, LFT2, UE, VB12 (folate, liver function, urine, electrolyes etc)
Don't fret about all this terminology tho! These just mean all your bloods will be checked and one of them will be to see if you're anaemic and whether your Vitamin B12 is low, all contributing to your fatigue.
Secondly, please read thro our diet and fitness sub forums for ideas on what to eat and not to eat, the low residue diet is a good place to start.
Are you on any meds? Our treatment sections will help you with this.
Any questions, just shout, there's always someone here to help
Lotsa luv
Joan xxx

 

[PVail]

Hi Nicole
The advice from Astra is exactly what you need to do first . This has helped me a lot.
Regarding the diet , start keeping a food diary to help eliminate the foods that cause discomfort and also use the forum to find food you can substitute when times are bad .

Peter

 

[kendallkaos]

There's no doubt about it.. Crohn's sucks! I was diagnosed a year ago after searching for answers for almost 9 years. It's been a hard year to say the least. One of the worst things about this disease is it seems to be different for every person. And what works for somebody else might not work for you. So first and foremost it's important for you to become your own best advocate. Educate yourself on the disease. Start keeping a daily track of not only EVERYTHING (including over the counter medications) you put in your mouth but also your physical activities and emotional state of mind. Crohn's can have many triggers. I've never been able to find a link between my flare ups and anything I've consumed, done or felt! Hopefully you do and can figure out what needs to be eliminated.

Next the most important part of a good treatment plan is a good doctor. And once again what works for one person may not work for you. Trust your instincts and listen to your intuition when choosing yours. If you have a hard time asserting yourself then bring somebody to your appointments with you that will speak up on your behalf and make sure ALL your concerns get addressed. There is a great doctor discussion guide on the CCFA website here is the link http://www.ibdetermined.org/Common/documents/ibd_doctordiscussionguide.pdf Fill it out and take it with you to your appointments. Make sure your doctor is adequately addressing your concerns. If you aren't feeling heard then you should probably consider finding a doctor who you are better able to communicate with.

I know none of this helps your current state of pain or lack of energy. But eventually with the help of a good doctor it can and will! One thing that has worked for me is drinking TONS of water. Water can help reduce inflammation which causes the pressure and leads to cramping. It also helps prevent kidney stones which can be a side effect of Crohn's and are very unpleasant. People with Crohn's are also quite often anemic and/or vitamin deficient which would add to your lack of energy. If you haven't yet found a specialist that knows what they are doing then insist that your current doctor do a complete blood work up. And if you take any over the counter meds for pain I've been told people with Crohn's should choose Tylenol (acetaminophen) over Ibuprofen.

Good luck. Try not to lose hope or let this defeat you. It does get better!

 

[David]

Welcome to the forum! I agree with Astra as well. Get that blood work done and specifically request the vitamin B12 test as it's not included in "normal" blood work.

We're here for you anytime

 

[Mary:)]

YES...a GREAT DR is a MUST. Also dont let the disease get you down..there are alot of meds and great diets that will help. I pretty much started with Humira which is a Bio-logic medicine...I was very scared to take it ...But it has been a life saver for me.
Remember when you are not feeling well to try and relax and take time for yourself maybe long baths, meditation, reading. Try to also remember to heal yourself emotionally too

 

[Irene3]

A food diary, and like kenda wrote, all medicines symptoms ect can help. When your very sore, try to sit for a bit, because it can help to just relax your bowels. A lot of people here write that yoga and pilates can be great for crohns, and I personally want to do a bit both most days, and be on an scd diet, which you can find in the diet and fitness subforum. For flaring crohns, like astra said, low residue is best. With a symptoms diary, if you try diff vitamins, and see how much you bloat when eating ect, it can help long term. I only started one recently, but all pilates, etc, slow scd I want to write in it, to see what helps the crohns, and what seems to make it flare. I also am about to begin humira, and before your next GI appointment, maybe have a look at the treatment sub forum, and you'll be able to ask your GI about medications ect as well. Best wishes, hope you find all the info and support you need on this forum. It helps to talk to others who have the exact same issues, and there are many wonderful crohnies on this forum, with great advice. Xoxo

 

[tots]

I can tell exactly what affects me diet wise- that d#$% ham and cheese HotPocket! Anything with fiber right down to cherrios- oatmeal- salads- freash fruits and vegetables. I also know when faced with a stressfull situation I am pretty good health wise while it is going on but, when it eases up stops I will have a flare up. Getting my family to understand that has not worked out so well!! (never get on the back of your best friends motocycle) Having your 17 yr old with a broken back- and it was a very bad one. Yep, pretty much after he got out of the body cast 6 mo later, flare up. etc with kids. Looking back I should hav been more proactive with my Dr before hand. Hind sight and all that....

Bottom line listen to your body- know one knows it better than you do. Don't just take an answer from your Dr unless you really understand. I have had this my whole life but, I have
learned more on this forum in the last 2 months!!



Lauren

 

[Angrybird]

Hello Nicole and welcome tot the forum. I can only agree about getting those bloods done and starting a food diary to look into what sets the tum off, our diet and sups forum will have some info about stuff to try as well. What meds are you on? I am sorry to hear you are not happy with your doc, I would look into perhaps getting under the care of a new one - it is soo important to have a good relationship with your GI when it comes to a disease like this.

AB
xx