Flares…What do You do to Get Back to LIFE!

Bio:

I am a 66 year old woman just diagnosed last year with possibly UC. My last colonoscopy was September 8, 2015 because the Dr. I am consulting with at Stanford needed more color pictures in order to come up with a definitive diagnosis.

Shannon M

Some more info:

I am a Certified Specilaist of Wine as well as a Sommelier. My husband and I love to fly fish and just came back from a 3 week fishing trip in ID. We have a small travel trailer (Casa de Wheels) that we take out a couple of times per month. We are both very healthy and do some sort of exercise every day. We are also avid readers.

Symptoms:

I am currenly using a Mesalamine Enema to control my rectal bleeding. This is a 4 week program; every night. I am also suffering from constipation that I am now taking Milk of Magnesia for. Makes it difficult to get my exercise in.

Shannon’s Story:

Last November, I was diagnosed with possible UC, however the rectum was not involved, so my Gastroenterologist was not sure. I was prescribed Apriso, but within a couple of weeks, I would have another flare and get put back on the Mesalomine enema again. Because of the huge cost of these meds, I fell into the Medicare gap and am now paying well over $200/each medication. The biggest frustration for me is that I don’t know how to get out of a flare without these expensive meds. A couple of months ago, I found a Dr. at Stanford that I know is going to be able to help me. I felt my current Dr. was just treating the symptoms and not trying to help me get relief from these flares other than the hugely expensive meds. He would never call me back. Just had one of his staff call me. No help there.The longest I have gone without a flare is 3 months. This last one, I also had horrible constipation and was told to take Milk of Magnesia. Th at really limits how far you can go from a bathroom.

My next appointment at Stanford is in November. She will have a bunch of new pictures from my colonoscopy that I had on September 8, 2015.

My husband is really supportive and has totally bought in to trying to go GF, stop caffeine and adding coconut oil to my diet (1T 3x’s/day).

My biggest concern is how to get myself back to normal when I get into a flare. I get very panicky when I continue to have bloody stools. I usually run a fever the first night I start entering into flare mode. I don’t feel like I have a very good support team from my local Gastroenterologist. His staff often doesn’t get the messages I leave for him. I have read that you need a strong Team that you can rely on even if you have to call them every day. I don’t feel like I currently have this support. I was so happy to find this website. Already many of the stories has made me feel like I can get through this. I just need to figure out how to get back to normal while in a flare. I am on a fixed income and paying sometimes over $400/month for these meds takes a huge toll on the retired life style that I enjoy.

Medications:

I am currently taking Apriso (4 tabs every morning). When I have a flare, I take the Mesalomine Enemas for 4 weeks. Some of my diet changes have been 1) going Gluten-free 2) stopped caffeine; start my morning with 24oz of water. Wait 45 minutes to eat. 3) no sodas 4) take 1T of coconut oil 3x’s/day.

written by Shannon M

submitted in the colitis venting area




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16 Responses to Flares…What do You do to Get Back to LIFE!

  1. Johan Nidelius September 30, 2015 at 12:56 pm #

    Try removing acid foods that means all animal protein. Meat, milk, eggs and cheese. If you worry about protein. Buy some soy beefs and tufu and your good. Eat anti inflammatory food. Most widespread is curcummin, but also fresh chilli

    • Johan Nidelius September 30, 2015 at 1:01 pm #

      Google read and understand the Briggs protocol
      thepowerofpoop.com/briggs-protocol/

  2. noelgallagirl September 30, 2015 at 2:06 pm #

    .

  3. Camille M
    Camille September 30, 2015 at 3:08 pm #

    Research has shown that for UCers, going gluten free is not enough. Grains are like sandpaper in the bowel, so you need to go Paleo (SCD is also kind of paleo). It is actually easier than going gluten free. There are millions of great recipes for anything your heart desires! Try that….it is far better than all the drugs they give you. It isn’t effective on its own, normally, but it will enhance healing.

  4. MG September 30, 2015 at 4:13 pm #

    Buy the book Breaking the Vicious Cycle by Elaine Gottschall. You can find it in the Internet. This diet is very helpful for people like us who suffer the Ulcerative Colitis desease. Read this book. It’s worth it.

  5. MG September 30, 2015 at 4:49 pm #

    The diet I mentioned before is the SCD diet, the Specific Carbohidrate Diet.

  6. maggiedream September 30, 2015 at 4:51 pm #

    Actually eggs are really good for people with UC because of the protein. Sounds like you’re doing the right things. I make my own kefir, which has lots of good bacteria. When you’re really flaring, it’s a good idea quite often to give your bowels a rest and drink herbal teas, chicken broth. I like to buy the boxed soups in the health food section of the store. Definitely quit gluten, which it sounds like you have, caffeine, and alcohol. I drink when I’m not in a flare but I’ve had colitis for so long I got used to not drinking alcohol so it’s not a big deal now, but sometimes I enjoy drinking wine or a gluten free beer. The bleeding is very scary but as a seasoned UCer, you get used to it. Sometimes I take iron if I’m flaring and I feel I’m bleeding too much. I just got out of a 9 month flare, which is usually how long mine last, unfortunately, but this one was milder because of drinking the kefir. I finally got so sick of having it though so I started the boxed soups I mentioned and lots of liquids. Diet is very important! I wish I could be as good as Adam with my diet, i.e., SCD diet, but I’ve never been a meat eater, I’m sick of chicken, and I rarely eat seafood. When I eat beans, I soak them for about 3 days, making sure I change the water every 12 hours. This makes them so much more digestable. The same goes for any grain you eat, such as rice, it should be soaked first, up to 12 hours. There is lots of good information on the net about this and fermented foods. I make a smoothie every morning with a banana, my kefir, frozen blueberries, adding olive oil or coconut oil is good, plus I add some powdered supplements and sweeten it with stevia, delicious! Good luck to you. It’s hard to get used to the adjustments but as you go along, you do learn a new way to eat that’s healthy and delicious.

  7. andy September 30, 2015 at 7:10 pm #

    try buying ur meds from canada once u fall in the donut hole.that is what i do for my asacol prescription . lot lot cheaper

  8. Luz Resto October 1, 2015 at 9:17 am #

    Hello Shannon.
    Sorry to hear of your condition. I also have ulcerative colitis. I was diagnosed 51/2 years ago. I had a very difficult time in the beginning but have learned a lot and have never been on medication despite the doctors telling me I needed them and will need them forever. The experience was such that it lead me to become an integrative health coach. If you are interested in learning more about what this condition is and how to manage it, please feel free to email me redspot1971@gmail.com. You will get a lot of bits of information from many people but you really need what to do and in what combination to get control of things. I can help you with that. Understand that your body was unbalanced for a very long time before any symptoms developed and you must learn how to balance your system again so that the body can begin to heal. I also have a page on Facebook called menu to health. I know very well what you are going through. Sadly, more and more of my clients have some type of digestive disorder. Colitis seems to be on the rise. I also know that doctors are not very good at educating the patients and are not knowledgeable of the connection between diet and disease.
    I hope to hear from you. Believe when I tell you, things can get a lot better once you know what to do. Wishing you wellness.
    In health,
    Luz Resto

  9. piso October 11, 2015 at 6:38 am #

    i’m curious, who’s your doctor who recommend Milk of Magnesia? his advice is quite similar to my first GI told. He was in san ramon.

  10. Shannon M
    shannon October 11, 2015 at 11:34 am #

    His name is Dr. Carlson in San Luis Obispo. I don’t have a very good support team with him or his staff. He really needs a PA so his patients are taken care of. His office staff calls my prescriptions to the wrong pharmacy; tell me he probably won’t get my messages for 3-4 days and just generally not helpful, at all.
    I am having a 2nd appt with a GI at Stanford in November. I am really hoping she is going to be able to get me straightened out.

  11. Fred S
    Fred October 19, 2015 at 2:52 pm #

    3 words:

    Specific Carbohydrate Diet

    If you haven’t already tried it, the diet works wonders. Grains what really causes the heartburn. Eat plenty of vegetables and protein. No rice, potatoes, corn, wheat, soy and no added sugar. Plenty of info and recipes online. :-)

  12. Shannon M
    shannon October 21, 2015 at 2:50 pm #

    Thank you so much for your response. I am actually trying to do the 30 day Paleo Challenge to see if this will help out at all. It sounds kind of like what you mentioned in your message. I am in the middle of a terrible flare right now and not seeing any success. By this weekend, if things aren’t getting better I am going to do Adam’s SCD for flares.
    Again, thank you!!

  13. Fred S
    Fred October 23, 2015 at 2:36 am #

    The Paleo diet is taking too long. Less than one week after starting SCD, the bleeding stopped and trips to the bathroom were cut in half!

    I believe removing grains and any heavy carbs from the diet is what works. What most people don’t know is that grains (especially when processed) can rob the body of vitamin D, which is important for the immune system. Increasing protein also helps with healing as well so for the first month or so try to eat 75-100 grams of protein a day. Changing the balance of protein vs. carbs in every meal is the key, while cutting out starchy foods and items with added sugar. My typical meal consists of a meat and 2-3 vegetables. That also includes some cheese and homemade yogurt.

    There are tons of SCD recipes online. My favorite is chili served over black bean noodles. If you need to know if a particular food or ingredient is SCD safe, just google the item and add the word SCD after it.

  14. Shannon M
    shannon October 23, 2015 at 8:08 am #

    I really appreciate your information. Going to seriously look at SCD. I have an appointment with my Dr. at Stanford on 11/3. It will be interesting to see what she decides to do with my case. I just want this to go away. She told me there are no studies to prove that food has anything to do with UC, but everything I have read says otherwise.
    Thanks again!

  15. Fred S
    Fred October 23, 2015 at 3:31 pm #

    My doctor said exactly the same thing. I started the SCD before ever taking any medication. They have me on Sulfasalizine now. I believe it helps ALONG with the diet. Changing the diet is the best long term solution.

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