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New here, diagnosed on Wednesday with Crohn's.

So I guess it all started 4yrs ago after I had my daughter, had just turned 19, I started having horrid back/stomach pains to the point I was vomiting and lost about 15lbs on top of the fact they I really only gained 10threw my whole pregnancy, first the drs said muscle spasms then after much pestering, sense the muscle relaxers did nothing to help, they did an ultra sound and decided I had gall stones and scheduled gall bladder surgery right away. This relived some discomfit so I at least stopped vomiting but for the last 4year I've delt with frequent BMs a day, 3-6 on a good day, a lot of cramping and pain particularly shortly after eating, and continued pain in my back, (they've narrowed that down to a mix of bulging discs and pain radiating from my stomach into my back) but over all nothing had been so unbearable I couldn't live with it and had just been told it was IBS and figured I'd have to live with just spending a lot of time in the bathroom.
Flash to jan of this year I had started getting really sharp pains on my right side/into my back and started vomiting again finally after three days of almost content pain to the point of not really being able to move I went to ER thinking it was my appendix, turned out it was inflammation around my colon. I then go to my family dr about a month and a half later sense the pain had only mildly decreased who decides send for an endoscopy and colonoscopy to check things out, due mostly to the fact that I was still getting sick,nearly every time I ate at this point, and had dropped from 112lbs during my last visit in oct, to 97lbs that day (with an all time low weigh in of 91lbs back in April when I went on for the scopes. As of Wednesday I'm up to 95 so slowly gaining a little) They biopsy a few spots and said there was swelling and inflammation at the opening of the small intestines but other that everything looked good but wanted a small bowel X-ray done. Fast forward to Wednesday of this week all tests done and results back (several ER trips for pain later) the gastro say all biopsies came back looking normal, small bowel X-ray was normal but the opening to my small intestines is closed to about half the sizes of a normal persons, it's visibly inflamed, showing me the bright red of my pictures next to a heathland persons pics, it was apparently so irritated it was oozing and bleeding and I have an ulcer. He said he would with put a doubt say I have a mild to moderate case of Crohn's and has started me on azulfidine sulfasalazine 4times a day, prednisone (which I've been on sense the scopes in April) 20mg a day..start to taper 5mg every two weeks starting in two weeks, Prevacid once a day, a one a day complete multi vitamin with iron once a day, as well as Vicodin as needed for pain (this is prescribed by my family dr for the pain from bulging discs)
I was doing good for about two weeks Burma back to feeling like crap I'm tired all the time except when I should be sleeping oddly, my stomach has been in knots of pain for a week now, I have no energy and although I'm not getting sick any more (maybe twice sense starting the prednisone) I'm nausea ALOT lately. I just want to feel normal and now I feel that may never happen! :(
Well that's my story. Has anyone had much luck with the meds I'm on? Any suggestions would be greatly appreciated. Thanks! :)
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
Hi and welcome! :welcome:

I'm sorry you've gone through so much already :( But, thankful that it's looking like they've figured out what's wrong and are treating you! When I was first diagnosed with Ulcerative Colitis I was put on sulfasalazine for years. I did achieve remission with the drug too. It wasn't until a few years after I had gotten married that I needed to change medications.

Please feel free to check around to other parts of the forum. One of the helpful places for you right now might be our forum wiki which will have explanations and such of as to medications, diagnosis and a few other things. Plus, our chat room is great as well for getting to know people. Please let me know if you have any questions. Looking forward to seeing you around!
 

SarahBear

Moderator
Location
Charleston,
Welcome to the forum, lmlentz!

I'm sorry to hear what you've been going through. :( You might want to check out the 5-ASA/Mesalamine section of the Treatment forum, found here. Sulfasalazine is similar to mesalamine, so you can find information and personal experiences there. :)

I'm glad the Prednisone is helping you. Are you having trouble sleeping? For the nausea, you may want to try ginger (ginger ale, ginger tea) or peppermint (candies or tea); those may help. If not there, are OTC nausea medications or your doctor may be able to prescribe you something.

I know it's hard, but try not to get discouraged! Feeling normal again is definitely possible. It might take time, and you may have to alter your medications and diet to find what words for you (or you might not even need to do that), but hopefully you'll be feeling well soon. :)

:hug:
 

Trysha

Moderator
Staff member
Hi Imlentz
You have been through quite an ordeal and not yet out of the woods.
Current thinking by some GI specialists suggest a top down approach to crohn's.
Perhaps you would do better with Remicade or Humira, and this woul be worth discussing with your GI.
It can be a very difficult illness to treat and what suits some is not helpful to others.
Feel better soon
Hugs and best wishes
Trysha
 
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