Recently diagnosed

Hi everyone,

I'm 27 and was diagnosed with gastroparesis about 3 years ago. I was managing it fairly well until January. In January I was hospitalized for 4 days with a severe infection, colitis, vomiting and I was basically pooping blood. The hospital did a CT where they saw the colitis. They first thought I had ecoli, then ulcerative colitis, then chrons. I was discharged from the hospital followed up with my GI doctor who Did another scope, and an MRI. They tried putting me on a steroid which I just threw up. Since being discharged I have had this pain in my lower left abdomen which radiates up to my ribs. I finally went to a specialist in Philadelphia. he diagnosed me with post infectious IBS. He let me know this infection was so severe he thinks it may have affected my GI lining in my intestines. He let me know it may get better or it may be permanent. I'm currently on Xifaxin, Nexium and an antispasmodic which is the only thing that helps the pain. I have lost 15lbs since this whole thing and the pain affects by life daily! Does anyone have any remedies or suggestions on how to the handle the pain? The Xifaxin apparently takes several weeks to do its thing. Or any suggestion on diet? With my gastroparesis and now this I have no clue what to eat.

Thanks in advance!

8 Replies

  • Xifaxan is an interesting drug and can work miracles in some. Sounds like you have a pretty solid diagnosis.

    How much xifaxan do they have you on and for how long?

    Has anythibg changed since you started the medications?

  • They have me on 550mg three times a day for 14 days. Not much has changed since being on it. Although my stress level has definitely decreased because I have an actual diagnosis now.

  • Xifaxan does take time to work if it is going to work. Make sure to stick to the amounts and times you take it.

  • I have been taking it as doctor refilled the antispasmodic prescription today which is good because that seems to help with the pain. Thank you for the advice ☺️

  • On their website the CCFA has a list of questions to ask your doctor at your next visit, which may be able to print out and bring with you to your next appointment. It's under the "Living with Crohn's and Colitis" tab under Resources. Having the questions could help you discuss all the treatment options available and explain to your doc the pain that you are in and your preferences for treating that.

    Some questions to ask about diet:

    Will certain foods or drinks make my symptoms worse?

    Are there certain foods or drinks that I should try to include in my diet?

    Are there activities or exercises that will relieve or reduce my symptoms?

    The CCFA has diet plans on their website too so maybe you could get ideas for recipes there, but of course speak with your doctor about their recommendations to understand the best approach for you and to find out what foods are off limit.

  • Okay! I will definitely take a look at that!

    Thank you!

  • It may or may not work for you, but it's worth looking into stuff like meditation, yoga and like if you dont already do it. Personally yoga isn't for me but I find uncomplicated, unpretentious mindfullnes meditation to be an absolute lifesaver on the bad days. It wont stop the pain but for me it just helps me to relax and accept the pain rathed than fighting it. There's a great app called Headspace which is uber simple, I really recommend! Look up mindfullness, it's worth trying :)

  • I will definitely look into it...I actually ride horses...which is typically my stress reliever...but with this recent IBS and hospital stay I have been so weak and the weight loss I haven't been riding. I actually tried to this weekend and was in a lot of pain after. So yoga may definitely me an alternative! Thank you!

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