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Crohn's Disease Forum » Your Story » New to Crohn's


07-18-2015, 11:54 AM   #1
ymny123
 
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New to Crohn's

Hello everyone and thank you for reading this!

I have been recently (this month) diagnosed with Crohn's disease. My doctor has not been straightforward regarding which area of the small bowel is affected, but from what I understand, the disease is affecting all three segments.

I'm 28 years old, and I have always noticed weird symptoms after eating (since I was a kid) but they were inconsistent, at best.

Within the last 2 years, or so, I have noticed several red-alert foods that upon ingestion would cause me to feel: (1) very irritable/impatient (2) very bloated and (3) very light-headed. The list kept of red-alert food kept growing and getting longer that this this past year, I would rather force myself to vomit if I ate them, than to have these symptoms. Needless to say, I have lost weight, and I have been quite anxious about it.

I decided to set up an appointment with my wife's GI (she has UC- this must be very rare to have a married couple with UC and CD). My GI did an upper endoscopy, a colonoscopy, and a capsule endoscopy and has diagnosed me with Crohn's. He has prescribed Pentasa and Xifaxan which I've been diligently taking for the last month.

I noticed that my bowel movements are much more formed, but I still swing between states of constipation and need to go the bathroom multiple times in the morning. In addition, I feel fatigued on some days, and I am not sure this regimen is working.

I think my condition is fairly mild (especially compared to what I have read in other posts) but I wanted to get some advice, especially pertaining to:

1. Diet - are my symptoms consistent with what you experience from trigger foods (i.e., fogginess, bloating, mild pain, and irritability)

2. I have been on my pills for about a month and the only difference I've noticed is that my bowels are more well-formed, but I still have pain and lethargy. From your experience, should I wait longer for the pills to work, or should I tell my doctor?

3. Do you have advice on how to discover trigger foods? I am very afraid to try foods and I stick to the same menu every day (excepting dinner).

*I noticed that when I feel the way I feel after eating trigger foods, if I load up on baking soda, the feeling sometimes passes. Do you have similar experiences?

Thank you so much for all of your help, I really appreciate it! I feel a bit lost and unsure whether these symptoms are severe enough to warrant such a reaction.
07-18-2015, 01:57 PM   #2
Honey
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Location: United Kingdom
Hi there and welcome,
It takes time to get a full diagnosis re the area, so do not worry about it. It also takes time to get the right meds for you. We are all individuals in our illness and response to meds. I was on several meds which either did not work or I had severe side effects before I had to agree to Infliximab infusions. I have been off that for over a year and well, but may have to go back on.
I have found, over the years before diagnosis, that certain foods give me Diarr.. the next day! You will know yourself. With me it is rich, creamy sauces , coleslaw, cheesy
.
07-19-2015, 01:10 AM   #3
Caitlin84
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It certainly can't hurt to tell your Dr about your symptoms and see if they think you should give the meds longer. I would ask about specifics about your test results. I would think with all that internal imaging they could tell you more specifics about what parts of your intestines are involved. As for trigger foods, unfortunately it is a lot of trial and error and vary greatly per person. Good luck!
07-20-2015, 11:21 PM   #4
dave13
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Hi ymny123

Diet is a hot topic for sure.There are as many opinions as there are crohnies,in my opinon. Many mainstream doctors barely consider diet as a tool to fight this disease. Have you checked out any of the diet and fitness support groups?

I agree with Caitlin84,ask your GI what your diagnosis is.Do you have a good rapport with your doctor's nurse? Ask him/her questions you have.Don't be shy,you are dealing with this disease.Our doctors deal with many patients,this is true.You can be assertive without being aggressive.I would ask your GI what was it that brought him to the diagnosis of crohn's,ask it to be explained to you.Ask to see the test results.

Pentasa,as far as drugs go,is fairly mild. This may be helpful http://www.crohnsforum.com/wiki/Pentasa.

Keep us posted.
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