Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

My UC is a Pain in the Butt for Me and My Life!

Recent picture with my Husband and grandaughter!

Hi I’m Sheryl Koppa, I love in Mckinney, Texas.

I’m married to an awesome, caring husband. And I have two grown girls and I’m a new grandma, so exciting.

I love the beach, love to water ski and I read a lot. I’m reading more about UC these days, but knowledge IS good!

I’m currently in a flare, my friends called my high school car, The Shitter! It was old! So they would holler across the parking lot to me and yell…Hey Shitter! Well now the name fits for a whole different reason. Ugh!

Sheryl’s Colitis Story:

I’ve had ulcerative colitis for almost two years, my symptoms started slow then bam, it hit and has not let up. I lost 24 lbs very quickly, which I did not have to lose. I lost a lot of hair because no nutrients were staying in my body at all and I was very, very tired all the time. I started Lialda, it did nothing. I started Remicade and in the beginning I felt better after the treatment for several weeks, then it would be gone before my next treatment and I would be really bad again and back in the hospital. My weight was too low to have a big dose so it was not doing much. My father was very ill and in hospital also at this time and I was helping my mom a lot, or trying to. I think I was very stressed on the inside. Then I had the opposite happen and got completely constipated for 10 days and I think that pain was worse!!! Back to hospital again! For some reason I slowly started gaining some weight back, and started feeling little better, then a flare again ! My Dr decided to double my Remicade to see if it is still working, I have been on it a year now and we think I may have built up antibodies against it. I just had the treatment a week ago, right after I was really loopy and extremely fatigued for 3 days. And still going to the bathroom a lot!

So the doctor is talking about changing to Entyvio.

I’m not sure about that yet.

I am also developing arthritis in my hands. I just got Adam’s book and have just started following the diet for two days. It is a huge change, but I need to try something else to see if this will help. I really miss my active life. I’m 53 and used to feel like I was 30, I definitely DO NOT feel like that anymore and I’m so tired of missing out on family and friends events. Road trips make me very anxious! But my family has been very supportive!

Medications

I took lialda in the beginning, it did nothing, I’ve had CDIF twice and took vancomycin, no side effects and it worked. I’m on Remicade now but it is not working much any more, thinking about Entyvio. Is anyone on this and having good results? Any side effects?

written by Sheryl

submitted in the colitis venting area




Texas

38 Responses to My UC is a Pain in the Butt for Me and My Life!

  1. Laura F March 25, 2017 at 3:10 am #

    Hi Sheryl,
    Have you asked your doc about taking a probiotic? VSL #3 is a very good one, it’s over the counter, but you have to buy it in the pharmacy (refrigerated). Walgreens carries it. It can really help prevent the recurrence of C-diff, which I know from experience is a nightmare. Did you know rhat C-diff can even occur a few months after taking antibiotics, so you might not even recognize the correlation between the two? It’s taken every day , and it can really help get you out of a flare and become normal again.

  2. Sheryl K
    Sheryl March 25, 2017 at 7:46 am #

    Thank you Laura! I was taking one for a little while, I have read good things about the VSL #3 and plan on getting some today to get back on them. I’m back on prednisone again as a taper. Don’t like to be, but it does make me feel little better to get through the day. My symptoms are better but still going, just not quite as much and still blood, which worries me.

    • Laura F. March 26, 2017 at 2:33 pm #

      Yes, the two- headed monster, prednisone. I’m on it again right now, too, 5mg. Also on Uceris, which is a corticosteroid, just an incredibly pricey one. On Lialda, max dose and turmeric also, along with the VSL#3 and omeprazole. The prednisone can feel like a lifesaver, but I worry about the laundry list of side effects. The last thing I was eating that caused bleeding – now keep in mind I had eliminated everything else- was block cheddar cheese. For some silly reason, I had read that cheddar cheese was OK, so every day, I would eat a few slices off the block.When I went to my MD, and told him that I could tell him exactly what I had eaten over the past 3 months, since my choices were so limited, as soon as I hit on the cheddar cheese – that was it – I stopped immediately and the bleeding ceased. I learned very quickly that no dairy means just that, regardless of what I happen to read on the internet.

      • Sheryl K
        Sheryl March 27, 2017 at 10:25 am #

        Wow, I am eating cheese too. Guess I’ll cut that out also. But what I am eating, all natural and healthy is great, but does not allow me to gain weight. No sugar and no carbs so my weight is going down, and it really Cannot get any lower and stay healthy. Any suggestions on what to eat to gain weight.?

  3. Ben March 25, 2017 at 7:29 pm #

    Hi, Sheryl::

    I fully agree.with you,luckily we have this website and all the other friends here to help us.

    I used to be an active swimmer and now too scared to swim since every time I swim, I loose weight. not sure what to do.

  4. Pauline Fantozzi March 26, 2017 at 1:47 pm #

    Hi Sheryl
    I was flaring on and off for a year and a half. On three steroids during that time , uceris, imuran and prednisone. I am on Entyvio now since Feb 2 2017
    It is working… the prednisone and imuran together was working before I went on the Entyvio
    But not without a trade off.. I felt like 30 before all this drugs too. (Over 50)
    My side effects are extreme Fatigue. Bone and joint pain..and the dreaded hair loss!! but living a more normal life. I take the entyvio every two months.. so far so good !!
    There’s always hope. Keep the faith. Hope that helps you
    Paulina

  5. Sheryl K
    Sheryl March 26, 2017 at 2:26 pm #

    Thank you so much Paulina. I am planning on starting the entyvio as soon as it gets approved for me. I am on Imuran as well, but not noticing it helping much. Hopefully this will be the one that works.

  6. Stephanie March 29, 2017 at 6:07 pm #

    Hi Sheryl and everyone else
    I had UC for 36 years only to find out I had parasites that never showed up on stool tests time after time. I found an alternative MD that gave me my life back. I started a new journey with Phosphatidyl Choline and Glutathione IV treatments. The next day the diarrhea stopped and within a week the bleeding also stopped. I was on Prednisone and could not get off of it my gastro was ready to put me on Remicade but when I researched the drug I had serious concerns about a drug treatment that could give me cancer. My gastro gave me the referral to an alternative MD and my life has changed. I am now 57 years old I was first diagnosed with UC when I was 22. I want to help whoever I can. I just recently answered a blog for a mom of a 14 year old boy who was ready for surgery all the biologics he was on stopped working. He has just started the same IV protocol that I had and he lives in Florida. I live in NJ and my alternative MD provided me with an alternative MD in Florida. I would love to share my story in more detail and provide a referral to whoever is interested. Pauline is right there is always hope!

    Stephanie

    • GA April 10, 2017 at 8:27 am #

      hi Stephanie

      Thanks for sharing your story. It was very encouraging. My son (7 years) got diagnosed with ulcerative colitis last sept. He is on third course of Predisone, the moment we stop it, he flares again. We would love to hear more on your story. We live in california, but ready to visit your doc if there is no alternative here in CA.

      • Stephanie April 17, 2017 at 12:36 pm #

        Hi GA please advise where you live so I can try to get a referral.

        • GA April 17, 2017 at 9:05 pm #

          Hi Stephanie, we live in Sacramento, California.

          • Stephanie April 24, 2017 at 2:42 pm #

            Hi GA I saw Dr Gedroic today and she provided me with a referral in Sacramento California. The Gordon Medical Associates.

    • Shabnam April 13, 2017 at 10:34 am #

      Dear Stephanie,
      Could you explain more about Phosphatidyl Choline and Glutathione IV?
      How and where can i get this treatment?

      Thanks

      • Stephanie April 17, 2017 at 12:35 pm #

        Shabnam please advise where you live and I will see if Dr Gedroic can provide. Referral. I see her on April 24

        • Shabnam April 18, 2017 at 11:46 am #

          I live in London, Uk

          • Stephanie April 18, 2017 at 12:48 pm #

            Ok I will ask Dr Gedroic if she knows of any doctors in London. I know this treatment is well known in Germany. Dr Gedroic goes there often to meet with doctors. I have put in a few calls this week waiting for a return call. I do see Dr Gedroic on Monday April 24 and will definitely get all the referrals then.

          • Stephanie April 24, 2017 at 2:40 pm #

            Hi Shabnam I saw Dr Gedroic today and she provided me with a referral in London. The name is Damien Downing.

    • Shana Hussin July 6, 2017 at 7:35 pm #

      Hi Stephanie. My 12 yo son was diagnosed with UC last year. Completely out of the blue, he was very healthy and on antibiotics only once as a toddler. He had normal BM’s until this horrible gas hit. Literally well one week and sick the next. He’s very active and handles stress well, is a happy child. I am a dietitian and fitness fanatic so our lifestyle is very healthy. He didn’t see much healing on 5 months of SCD. Just can’t figure this out! I feel like something is missing. If your Dr could recommend anyone in the Green Bay/Appleton WI area, I would appreciate it. And I’d love to hear more about your story. Thanks! Shana

  7. Sheryl K
    Sheryl March 30, 2017 at 9:55 am #

    Thank you so much for the info. My UC started about 2 years ago originally from a parasite also. Which they say is gone now, but I cannot seem to get out of a flare for more than a week or so. I live in Mckinney TX by Dallas. If you can provide me with an alternative MD that would be awesome!!! Thanks again!

    • Shabnam April 18, 2017 at 9:18 pm #

      Thank you

      Regards

  8. Stephanie April 2, 2017 at 7:17 pm #

    I will call my dr tomorrow to see if I can get a referral near McKinney TX!

  9. Laura F April 2, 2017 at 7:49 pm #

    Wow! That is fantastic about the teenage boy.

  10. Stephanie April 4, 2017 at 8:33 pm #

    Hi Laura I hope you are feeling well! I left a message with my dr waiting for a return call with a referral near McKinney, TX. I will follow up again tomorrow.

  11. Laura F. April 5, 2017 at 7:27 am #

    Stephanie, I have to ask you, if the parasites never showed up on stool tests, how were they eventually found? Was there a specific blood test performed??? Thanks!

  12. Stephanie April 5, 2017 at 7:32 am #

    No it is an energy test not scientific at all. I had ozone therapy with an UV light and wow everything started to come out for a week!

    My Dr’s office returned my call and they are researching to find an alternative dr that can provide you with the same IV protocol in the McKinney TX area.

    As soon as I hear back I will let you know!

    • Laura F. April 5, 2017 at 7:47 am #

      Stephanie,
      I think you have me confused with Sheryl. She lives in the McKinney area.
      But, thanks for answering my other question.

  13. Stephanie April 5, 2017 at 7:51 am #

    Sure anytime!

  14. Sheryl K
    Sheryl Koppa April 5, 2017 at 6:36 pm #

    Thank you so much for the reply. I look forward to seeing who he recommends. I believe I may still have parasites also, so this is great info to have!!

    • Stephanie April 24, 2017 at 2:36 pm #

      Hi Sheryl I saw Dr Gedroic today and she does not have any referrals in Texas but I also but a call into Dr Gurevich to see if he can provide a referral. As soon as the office returns my call I will get back to you.

      • Sheryl K
        Sheryl Koppa April 24, 2017 at 7:05 pm #

        Thank you so much for trying. I really do appreciate it. I did find one in Frisco TX, that I just started with about 4 days ago. I am on lots of herbs/vitamins and many different foods that I have not eaten in over a year. Salads, sauerkraut (for my probiotic) Green smoothies, beans… It is all VERY interesting, and I am giving it a try to 30 days to see what happens. Her name is Dr. Sridharan with Hygieia Homeopathic Clinic.

        • Stephanie April 26, 2017 at 8:00 pm #

          That’s Great is he/she an alternative MD? I am pretty sure an MDs are the only ones that can give the IVs that I received that put me right into remission. I still have not heard back from Dr Gurevich’s office but I will follow up tomorrow. How are you doing on the new diet?

          • Sheryl K
            Sheryl April 26, 2017 at 8:38 pm #

            Yes she is an alternative MD. I am starting to feel better, still working through some food issues. I will definitely ask her about these IV treatments too.
            Thanks so much.

        • Mohan May 12, 2017 at 10:52 pm #

          Hello Sheryl,

          I live in Plano TX. Can you please let me the feedback on dr. Sridharan. I wanted to try alternate medicine for my UC.

          • Sheryl K
            Sheryl May 15, 2017 at 7:29 pm #

            I am doing good so far on my new food/ herb and vitamin plan. I go back to Dr. Sridharan this wed for my 30 day check up. You can contact her at 469.403.1999. If you wish you can list me as a referral. Good luck. Sheryl Koppa.

  15. Stephanie April 6, 2017 at 2:29 pm #

    Hi Laura I am still waiting for my dr to provide a referral in TX. He is a she her name is Christine Gedroic MD, she is located in Bernardsville, NJ. I am going on vacation in Sunday out of the country if I do not hear back tomorrow I will follow up when I return on April 17. I hope you are feeling well.

  16. Stephanie April 6, 2017 at 2:31 pm #

    Sorry I meant to say Sheryl!!

  17. Brittany June 18, 2017 at 5:17 pm #

    I am on the same page. Interestingly enough I have found some type of remission with a all liquid diet.(juicing l glutamine, probiotics) I wonder if anyone here has done coffee enema therapy? I have done it 3 times now and it seems to be slow going literally. I am looking for a cure because western medicine just isn’t giving it to me

    • Stephanie June 18, 2017 at 6:40 pm #

      No I have not but I have done ozone enemas. If you would like to discuss my treatment please email directly at Jordon96@aol.com.

      Thanks
      Stephanie

Leave a Reply