Any Advice - New

[mkennemore]

I am new to this forum, but really searching hard for answers to my disease. I was diagnosed with Crohn's disease in April 2008. I have had my ups and downs since, but am in a HUGE down right now.

I saw a new doctor last week and he is doing another colonoscopy, CT, and sending me to a rheumotologist to be tested for other auto-immune diseases. He is also testing me for infection in my intestines.

Here are some of my symptoms:
Diarhea
Pain in left side of stomach when resting
Pain in all stomach area when pushed on
Pain in legs and arms
Severe pain in hands and wrists
Headache
Fever
Eye pain (feel swollen)
Blurry Vision
Anemic
Sinus Issues (Antibiotic does not work)
Severe body pain (Feels like it's in the bones)
Fatigue - EXTREME
Feeling of not being able to move legs and arms, too heavy

My doctor seems concerned that not all of these symptoms are from the crohn's disease. Does anyone else have all of the body pain and problems? I am scared I may have lupus along with my crohns disease.

I am currently a customer service manager. I work 45-50 hours a week, when I am not missing work from my disease. Luckily, I can work from home if I don't abuse it. I have been a trooper, but lately I feel like I can't get up and do it anymore. Has anyone had success getting disability benefits from this? I hate to throw in the towel, but I don't know how long I can go on with this pain.

I have a colonoscopy scheduled for this week, the CT next week, and my rheumotologist appt is at the end of April. I am just praying there is light at the end of the tunnel...

Any advice or similar stories? I have had the disease now 3 years and about 3 weeks ago I took my first pain pill for the disease. This was a HUGE step for me and I just hate doing it! I would like to get off of them asap.

 

[margie]

Mkenne,
Welcome to the forum, you are in the right place for advice, support and there is a wealth of information on Crohns here.

As far as the symptoms that you are having, I also have pain in those areas. I had recently been diagnosed now with Fibromyalgia too, which is the cause of a lot of my lower back pain, pain in arms, legs and hips. You may want to talk with your doctor about that possibility too.

I hope that they can find some relief for all of your pain with the tests that you are scheduled to have done. Please keep us posted.

 

[Crohn's Mom]

Mkennemore,

I don't have Crohn's, however my daughter does and she has had the majority of your symptoms.

I just really want to say welcome to the forum and you will find a wealth of information and wonderful, friendly and knowledgeable people here !

Best of luck to you! I hope you feel better and find your answers soon!

 

[xJillx]

Welcome, Mkennemore! Many people on the forum experience the symptoms you listed. So, don't get yourself into a panic. However, I am glad you are getting things checked out just in case. But, again, I wouldn't worry too much. Though Crohn's affects the digestive tract, it has an impact on the entire body.

Please keep us posted on your upcoming appointments and tests!

 

[Jer's Girl]

Welcome, Mkennemore! Many people on the forum experience the symptoms you listed. So, don't get yourself into a panic. However, I am glad you are getting things checked out just in case. But, again, I wouldn't worry too much. Though Crohn's affects the digestive tract, it has an impact on the entire body.

Please keep us posted on your upcoming appointments and tests!

Ditto! Welcome to the forum!

 

[ameslouise]

Welcome to the forum! I agree that many of the symptoms listed are common for Crohn's. Good luck with your appt and hope you can get things sorted out soon.

Many of us hate to take pills and pain pills, but you need to take care of yourself and do what you need to do to make yourself comfortable.

Let us know how your appt goes.

- Amy

 

[ChampsMom]

Hello and welcome...

I am also new to the website - I do not have Crohn's either, but my 14 year old son does... He *has* experienced many of the symptoms you are describing.

Prior to him having *any* stomach issues he was having some vision problems - I took him twice in one year to have his eyes checked and he kept coming back 20/20. When he complained again, I remember telling him, "Look if you want the cool glasses that kids wear, just say so, but I'm not paying to see the eye doctor again!" laughs... Cut to a year later and the GI doc explains that the I-nflammation part of IBD can cause inflammation in any part of his body... eyes, joints, etc...

His fatigue was due to low iron and protein levels - when you see your doctor, ask about supplments (if you're not already doing something)... When my son's doc said we could back off the iron, I said thanks, but no thanks...

Hope you get some answers soon...

Shelly

 

[mkennemore]

Thanks everyone! I told my mom I finally posted on the forum and you guys made me feel like maybe this is normal. I feel a little better. I should get my results back around the middle of the month from my tests, so I will keep you updated. Thanks for the support!

 

[vonfunk]

With the exception of the sinuses and eyes, I've had them all. For the longest time I was unable to lie on either side, and had to sleep perfectly straight on my back with my arms at my sides. Hell, having IBD managed to bring other issues I have to light, mainly hip problems.

We've all been through some if not all of what you've described. For me the biggest issue is the anemia. I had to have 3 blood transfusions last year.

 

[ChampsMom]

Hey,

I noticed the word "doesn't" was in the wrong place - but my son HAS had many of the same issues.

 

[ChampsMom]

[For me the biggest issue is the anemia. I had to have 3 blood transfusions last year.[/QUOTE]

Von - why would you have to have a blood transfusion for anemia? (Still learning here...) do you mean they infused you with iron or replaced your blood? I've read a few other people say blood transfusions, but I was confused as to why. It's been almost one year since my son was dx.

 

[vonfunk]

It depends on the person. In a flare I bleed heavily, I became anemic due to massive blood loss. I would los blood to the point where I would almost pass out if I stood up too quickly. Over the course of the summer during my 3 hospital stays. I was given a total of 8 units of blood and 3 units of iron.