Crohn's Disease Forum » Your Story » Crohn's - My new reality -

10-04-2017, 06:50 PM   #1
Join Date: Oct 2017
Location: haleiwa, Hawaii
Crohn's - My new reality -


I was diagnosed with Crohn's at the end of 2016. I had surgery, small bowel resection in March. It happened fast. I have had horrible stomach pain since 2010. Part of my tests included the Pillcam. IT GOT STUCK! For three months it was in me until surgery. That was justice to me that I now had a real problem. Doctor informed me that my Crohn's is not typical. It is mostly ulcers in the small intestine. Which led me to have have severe anemia. I had two blood transfusions in November. Went on Prednisone for about 6 months. What a horrible experience. Loads of side effects. Now I am on Imuran. 100mg. I feel weird and always have a runny nose. (I teach Elementary school) Feels like I can not get my health back. Thats where I am at now.

Thank you for reading,

Questions -
1. I have joint pain. From what??? any other people have this issue
2. What alternative treatments have you all explored tried. (want to get off Imuran)
10-04-2017, 07:09 PM   #2
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Magnolia24's Avatar
Join Date: Nov 2013
Location: Oregon

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Joint pain - I get some mild joint pain when I flare. For others it is more severe, and some even develop arthritis. There are often inflammatory responses that occur in other parts of the body beyond the digestive tract. Have you mentioned this to your doctor?

Alternative therapies - I feel like I should qualify this by saying I am not med-free and cannot speak about any of the following in place of medication. There are others who can speak more about that. If you do make that choice, make sure you continue to get regular tests to see how you're doing. Anyway, non-med elements of my health routine include...

1. Diet. I have had success with the Specific Carbohydrate Diet, and truly believe this is the most important part of keeping my disease under control. Similar diets include GAPS, Autoimmune Paleo, IBD-AID, etc. Check out Breaking the Vicious Cycle,
2. Probiotics. VSL #3 is the one that has the most research backing it up. Your doctor can prescribe it.
3. Curcumin, natural anti-inflammatory from turmeric
10-04-2017, 07:09 PM   #3
Join Date: Sep 2017
Location: Abilene, Texas
I can totally relate! Pillcam stuck! 3 months caused intestines to twist. Spent 6 months in the hospital. Had over 2ft of intestines removed along with most of my colon and now have an ilieostomy bag. All because my former Dr is apparently only able to say "that's normal" to every symptom I've ever had. Surgeon in Dallas said He should not be practicing med. So I hear ya! It's mind blowing. Comes on fast and furious! I have found that probiotics and Tramadol work very well. It took me another 6 months of TPN IV treatments and extensive therapy BUT it is possible! Don't loose Faith! I'm praying for you!!

10-04-2017, 07:36 PM   #4
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Welcome. I hope you are better soon.
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
10-04-2017, 08:32 PM   #5
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Join Date: Nov 2013
Location: Oregon

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I will add to what I sad before...that I did make the choice to get off of Imuran (just not off all medication) and do feel like what I described above, expecially diet, allowed me to do that
10-04-2017, 10:11 PM   #6
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Jabee's Avatar
Join Date: Oct 2016
Location: Massachusetts

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Have you had any recent imaging to look at how your small intestine is doing? Crohn’s is in only my small intestine as well, and when I the inflammation is active I feel really run down; my hemoglobin and some vitamin levels go down. Can your GI order any tests to check on things? Or have you had tests and everything is “within normal limits”but you still feel lousy? There are other medications you can try in addition to diet. Have you spoken with your doctors about how you feel?

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