Ulcerative Colitis-I Wouldn’t Wish this Disease Upon Anyone!

My name is Shawna, I am 31 years old.

I was diagnosed with Ulcerative Colitis a year ago.

I started noticing I was having a problem with diarrhea a few times a day, after about a week of this I started seeing blood. About a month later I went to the doctor and was told to just take pepto bismol.  I did that and nothing happened.

I went to another doctor and he said to take Immodium Ad, that didn’t work either. I went to a third doctor and she actually did a stool sample and saw that there was blood and told me to see a GI doctor. I was scheduled for a colonoscopy about two months after my first problems with diarrhea, by this time I was feeling really weak and I had lost 10 pounds. The colonoscopy showed ulcerative colitis. I was put on Lialda and went into remission. I have three children and I am now 5 months pregnant with number four. As soon as i got into my second trimester I started having a flare up. The doctors put me on a 40mg taper of Prenisone. As soon as i take the steroid i feel much better, but after about 7pm I start having to use the bathroom more and I am up about five times in the night with diarrhea. There is still blood even though I am taking Lialda and Prednisone…is this normal? It has been difficult to be a mother and be pregnant while going through a flare up. I have been flaring for about a month now.

Any advice would be great, since i am still pretty new to this disease.

I’m not sure if any foods I eat make it worse, but i feel like I have been eating pretty healthy (no soda/caffeine, no fast food, I don’t smoke or drink). I hope it goes into remission soon, I would really like to enjoy this pregnancy!

Submitted by “Shawna” in the Colitis Venting Area and this story is now entered in the 2011 IHAVEUC Writing Contest!




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13 Responses to Ulcerative Colitis-I Wouldn’t Wish this Disease Upon Anyone!

  1. shannon July 27, 2011 at 4:03 am #

    Hi Shawna. My name is Shannon and I am also 31. I was diagnosed with UC at 25. Around the age of 28, I was pregnant with my 4 th child. Up until my second trimester I was in remission. Once in the second trimester, I had a flare up. My doctor advised me not to take any meds during the pregnancy but did prescribe a mescaline enema. My flare up continued throughout the pregnancy. Because my BMs mostly contained blood, my iron levels dropped and were very low when I gave birth. I think the best thing you can do for you and your baby is to inform the doctors that what you are taking may not be working and ask if there are other things you can try. Don’t be afraid to speak up…I know I should have. Hope this helps. : )

    • Shawna July 27, 2011 at 10:46 pm #

      Thanks Shannon for your advice, I see my OB/GYN tomorrow and I will talk more about it with him!

  2. Mel July 27, 2011 at 3:21 pm #

    Hi Shawna

    I HIGHLY recommend you try the SCD diet. Meds don’t always work. In fact if they work at all (in my experience) it is short term only. I am sure this is stressing you out which is not good for the colitis or your baby. A diet change like SCD and supplements like probiotics and omega 3s is a good start.

    Also, do you exercise? If yes, keep it up but beware of impact like running etc. Walking, cycling, swimming or yoga are best during flare up and are great for the mind. Rememeber, this is a body/mind disease. You likely won’t be able to simply take a pill and have it go away.

    I’ve been through the meds, naturpath, acupuncture etc…the most effective thing was diet, supplements (Boswellia worked wonders for blood in stool) and lifestyle.

    Be hopeful!

    Good luck

    • Shawna July 27, 2011 at 10:49 pm #

      Mel, thanks for your feedback! I will definitely look into the SCD diet! Yes, I am stressed, so I go for walks most everyday and I know of a prenatal yoga class in the area that I would like to try! I am trying to be more positive though.

      • Mel July 28, 2011 at 4:09 pm #

        yes please be positive! frame of mind is everything. and the yoga class would really be ideal. don’t expect overnight cures but i promise you if you take the time to take care of yourself and baby…it will heal.

        also check out Jini patel’s book Listen to your Gut. she has a website too but can’t remember the link. just google. she provides loads of options of natural treatments for you to try out. you can even get a personal consultation! that woman has done the work i can tell you! but of course, what works for one person, doesn’t necesarily work for another. this process is about getting to know yourself and your body. i know it’s hard to think of this way, but be thankful for the opportunity. after 6 years, i certainly am and have been flare-up free for over a year (used to get annual 3-month flareups).

        good luck!

  3. michael July 27, 2011 at 4:34 pm #

    Hi Shawna

    I have UC as well and I follow the SCD diet. It’s not a cure but roughly 8 or 9 people out of 10 with Crohns and UC see improvement, if not remission. I suggest picking up a copy of “Breaking the Vicious Cycle” by Elaine Gottschall. This will explain the SCD in detail. It only has about 60 pages of text and the rest of the book are recipes. Don’t be discouraged if the diet sounds daunting. I’ve been doing it for 10 plus years and it’s just 2nd nature now. You’ll adapt quickly and it’s a healthy diet. I’ve talked with hundreds of people with Crohns and UC and we all feel the sooner you start the diet, the less damage you’ll do to your gut. People who go on the diet relatively quickly after symptoms appear or a diagnosis is given, the better you’ll do in the future. The longer you flare with symptoms, the more damage you’re doing and some of the damage is irreversible. Also, don’t be depressed if the recipes in Elaine’s book don’t sound good. I think they’re good and there are probably 15 to 20 SCD cookbooks out there. I would venture to say that Elaine has helped more people with her book than all the GI’s put together. She passed away about 4 or 5 years ago. Get the book, manage your stress, start to heal.

    Take care,
    Michael Napolitano

    • Shawna July 27, 2011 at 10:52 pm #

      Thanks Michael, I will be getting that book!

  4. Megan July 28, 2011 at 9:24 am #

    I too had my first big flare in the 2nd trimester of my second pregnancy. I was put on colozal and prednizone – however like you it wasn’t working well. I had to have a PICC (long term IV)line put in and use TPN (total patient nutrition) for the last 4 months of my pregnancy. It was a HUGE pain and I had a 20 month old at the time too! Needed grandma’s to step in and help. But – the good news was the baby was very healthy and I was able to maintain till he was delivered.

    Talk to your doctor about iron infusions – that helps me during that flare too. I pray it doesn’t get to that for you – but it is an option. Hang in there!

    Megan

  5. Shawna August 3, 2011 at 2:42 pm #

    I had an appt with my GI doctor today, he is very concerned because I still have blood every time I’m in the bathroom even while taking prednisone. He says he may have to do a remicade infusion, if things don’t get better in two weeks. Being pregnant, I’m worried about doing the infusion. I’ve started changing my diet and have slowly seen improvements. Have any of you been pregnant and had to do remicade infusions? I just don’t know what to do. Thoughts and/or advice??

  6. Shawna August 3, 2011 at 2:46 pm #

    Also…is it ok to drink soy milk?

  7. Paula August 7, 2011 at 4:46 am #

    I’m so glad I found this. I’m pregnant in second trimester also and having a flare up. I was curious how other pregnant women are handling this. I just found this site because I’ve been up all night and decided to try to find more information.
    I do not want to take medicine if I don’t HAVE to so I’m going to research this scd diet others have mentioned. I’m very concerned because my first child was 6 wks early because I was so sick and dehydrated and after she was born THEN I found out the cause-UC. So I’m hoping this baby is healthy and makes it closer to due date.
    I hope the best for you and your baby also!

    • Shawna August 14, 2011 at 7:56 am #

      Hi Paula!
      Sorry you are going through a flare up!! Over the last two weeks I have changed my diet dramatically and I am doing much, much better now! I got the book, “Breaking the Vicious cycle”, and that helped me to get started. I didn’t follow it completely though. I stopped eating wheat, soy, dairy, and sugar. Every morning I make a fruit smoothy (ice, ripe banana, blueberries, and sugar free peanut butter)and it tastes really good! Other things I eat are scrambled eggs, cheddar cheese, homemade chicken soup (with cooked carrots and celery, cooked veggies with rice, fresh fruits (except strawberries and oranges), homemade applesauce without sugar, and I drink lots of water…those are just some ideas that maybe you could try? I am still taking 4 pills of Lialda and 30mg of Prednisone(it tapers down 10mg every two weeks) everyday, but I really think as I changed what I was eating it has helped me! I am not seeing much blood anymore and the diarrhea isn’t runny(sorry, I know that sounds grosse). It took me about two weeks to start feeling better, but I am glad I did it! I hope this helps, I wish you a good pregnancy!

  8. Paula August 26, 2011 at 9:13 am #

    Shawna
    How are things going for you? Is the Lialda helping? Did your doctor mention anything about Apriso while pregnant? Hope that you and baby are doing well!

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