Newbie that needs help

[bumbleb107]

Hi everyone,


My name is Jessica and my health issues started in December 2011 when I got off of a cruise ship. I was very lightheaded and was getting chest pains and burning sensations. I was a healthy person who worked out 6 days a week and never saw a doctor other then my ob/gyn. I had numerous tests and saw all kinds of specialists and was told there was nothing wrong with me other then gastritis and acid reflux. I was told so many times that it was anxiety but I knew something just was not right.

To make a really long story short, I was diagnosed with crohn's this past October at 40 years old. It was actually found by accident because I was having an abdominal cat scan with contrast to check a liver hemangioma that I knew I had for years.. Needless to say it trippled in size and was the size of a football. I had that removed in December. My GI did not think that I had crohns but did a colonoscopy and sure enough it came back that I did. He then did blood work that also confirmed the diagnosis and during my surgery the surgeon took a peak inside and also said that it was definately crohns in my ileum.

I do not have typical crohn's symptoms. Never had a bloody stool. Infact I was constipated and would only have a bm using miralax and colace. I have not been able to tell when I am having a flair and I am having a lot of problems finding a medicine that agrees with me. I have tried Asacol and it made me so sick. I can not take steroids because I am allergic to them.

I guess my question is.... Can crohn's affect your nervous system. I am constantly lightheaded. Not to the point that I am going to pass out, more of like a fog. I get chest pains and short of breath. I get pains everywhere.

My surgeon and GI doc think that my body is just so stressed and that is what could be causing the problem but still I feel, I know my body and something is just not right. My primary thinks that my crohn's is affecting me systemically.

Please, can someone help me. I am so tired of feeling like garbage. I want to be my old self. I don't know what to do anymore.

Thanks,
Jessica

 

[SarahBear]

Welcome to the forum, Jessica!

To answer your question, yes. Crohn's can (and often does) cause vitamin deficiencies, which can affect the nervous system. However, I don't believe this is extremely common. From reading your symptoms, fibromyalgia came to mind. Have you looked into this, or discussed it with your doctor?

Some Crohn's patients actually do suffer from constipation more often than diarrhea. Some also experience both. No matter what you deal with, you're not alone here!

Do you have stomach pain? Nausea? Joint pain? Have you tried any medications other than Asacol?

:hug: I hope you feel better soon.

 

[bumbleb107]

Hi sarahbear,

Thank you for responding. I have had so much blood work and all my levels come back within normal range. I have not tried anything else for my crohns. Trying to just eat healthy and removed gluten and dairy from my diet. I do not get major stomach pains but i do get bloated often . I feel full very quickly too. I have lost 15 lbs in the past year and cant put it back on. I am 5'5" and down to 112 lbs. I went to a rheumatologist and the only thing she said was costrocondritis. I freak out over every little pain and i do take xanex as needed but it has been a realy long year and a half of feeling sick with very few answers. Again, i knrew something was wrong and it took my persistence for them.to find the crohns and the hemangioma. I am.not saying that some of this isnt anxiety at this.point but i still think they are missing something or it isy crohns. I get odd nerve pains all over. And they happen at all times even when i am out havong fun it just comes.over me.

Please excuse the typos. I am responding from my phone!

Jessica

 

[Hope345]

bubleb107,

Welcome to the forum. Keep reading on here and see if you can find others having those symptoms. I am not familiar with them, but there is a reason you are having nerve pain all over.

You are doing a great job pushing the doctors forward helping you. With you losing so much weight, it signals that your body is not absorbing the nutrients you need.

Crohns causes inflammation anywhere in the digestive tract, but it is also known to cause inflammation in the eyes, rash all over the body, joint pain and arthritis is sometimes combined with Crohns.

What meds are you considering now? Even though you arent having pain, it is important to get all of the information under control.

 

[lizbeth]

Hi there welcome to the crohn;s forum , I'm glad you found us and sorry that you have been diagnosed with this disease.

I was a bit like you before I found out I had crohns, I worked out everyday, ate a healthy balanced diet and looked after myself, then I went into hospital with 'a sore tummy' and a wee bit constipated....or so I thought....2 weeks and a few investigations later turned up a crohns diagnosis.

Crohns is a very complex disease and can manifest in many places as already mentioned, it might be a good idea to have a look at the Extra Intestinal Manifestations sub-forum, it may help answer your questions and might give you some more to ask your drs. Below is a link:

http://www.crohnsforum.com/forumdisplay.php?f=81

When are you next to see your dr? Write down any symptoms you are experiencing and keep a food diary, both will be useful when you have any appointments, request an appointment with a dietitian too.

I know it's a lot to take in but take your time to adjust to this new way of life, you will get your old self back but it might take time while your medication is sorted out :hang: and keep in touch.