What The Heck is Ulcerative Colitis?

Introduction:

my name is Karen.  I live in California; I’m 42 years old and have 4 grown children and 9 grandbabys and a great hubby of 5 years. I am new to UC.

Symptoms:

bloody poop ,loose poop and stomach cramps that could put down an elephant and terrible gas

My Colitis:

My name is Karen; on the evening of Jan 20th I ate dinner and had muffin afterwards. I immediately felt sick and horrible stomach ache cramps. I thought it was from something i ate; diarrhea and blood and horrible cramps so bad that i had to get on the floor for fear of passing out! My husband said i went white as a ghost! I am always saying it would be better tomorrow! but as the night went on it got worse and after 9 or 10 bouts of blood and poop i started just passing only blood clots some scary stuff! The next morning after a awful night, I actually asked to go to hospital! after 8 eight hours of IV’s and blood draws ;morphine and other strong pain meds didn’t even touch the pain. I had a cat scan and was told i had UC! Never ever heard of that. Spent 4 days in hospital, and given flagyl and something else. so its been about a month now and still confused about what to eat and not eat! my stomach always hurts and Ive never drinkin so much water in my life. I see the gastroenterologist on march 16 for first time and don’t know what or if gonna be put on med? what kind ? and when i get to have a colonoscopy and what they’ll find? so far my day consist of A hot cup of water, 2 or 3 swallows of coffee, a can of ensure, maybe yogurt, then maybe oatmeal and maybe squash,avocado and maybe peaches and a little leaf lettuce or spinach and tofu. I’m just trying to feel better! some days i have to wait a while to see if I’m gonna be able to go anywhere or not! SSSSSoooo frustrated! Can any one please tell me what is the best way to eat. Luckily for me I enjoy so many different foods.

Colitis medications:

no medications yet!

written by Karen

Submitted in the Colitis Venting Area



11 Responses to What The Heck is Ulcerative Colitis?

  1. hillel February 28, 2012 at 12:34 am #

    I’m sorry to hear about what you’ve been through.

    Everyone’s different but I’ve found that eating only chicken/fish/eggs and steamed veggies (along with a lot of homemade chicken soup) works best for me.

  2. rico February 28, 2012 at 12:43 pm #

    karen,sorry to here about it,stay away from the meds there all bad and wont even work,i’ve been on it all,and even remicade and 6mp,it just sucks try to hang in there.

  3. Trina
    Trina February 28, 2012 at 6:01 pm #

    My advice is cut the coffee and oatmeal out completely. I’ve had UC for 9yrs. And I’m 33. My diet has changed so much through the years. But I’ve noticed when I lay off the carbs I don’t get so gassy bloated. Also make sure your veggies are cooked. I’m a huge water drinker as well. But when I’m in a flare my doctor recommends Gatorade or something with Electrolytes. Like Pedialite. If I were you I would try the meds until you feel better. Then try to control your flares with diet and stress management. You don’t want to blow your colon out. And end up having to have it removed. Good luck. It’s a long road ahead.

  4. john harmala February 28, 2012 at 7:21 pm #

    Karen,
    For me, the worst thing about ulcerative colitis was not knowing that I had it. Once diagnosed, I was able to learn how to manage it. I also think everyone is different and it is easy to get overwhelmed with well intended advice. While medications like Asacol and Colazal have been reasonably successful for me, managing stress and maintaining a healthy lifestyle (diet & exercise) have probably been more important.

    In specific response to your question about food, there are a few things I have found very helpful:

    -Avoid caffeine and artificial sweeteners
    -Minimize consumption of refined sugars
    -Consume Kefir, Greek yogurt, etc. (ie. good bacteria)
    -Drink water

  5. Merlin February 28, 2012 at 8:01 pm #

    Hi Karen
    I know what your going through and it’s not much fun so I can can only tell you be patient and listen to your GI and try to talk to your friends.
    Suggest that you get a copy of the book Breaking the Vicious Cycle it will give you a idea what you are up against and a diet to follow. I’ve only been on the diet for 2 weeks so I can only hope that it will help. Good luck to you.

  6. George in Napa March 1, 2012 at 4:29 am #

    Hi Karen,
    When I first got UC it hurt me a lot to have a bowel movement. The only thing that I would eat for 2 weeks was stage one baby food. I was losing weight fast and looked like crap (no pun intended). I lucked out and found a good GI doctor. He put me on prednisone for a couple months and initially this helped me. I discovered the SCD diet about the same time that I started taking the prednisone. I feel the diet has helped me a lot. I currently am taking mesalamine and some herbs and I follow the SCD diet about 80%. I hope that I never have to take prednisone again…. it does help to get things under control but should not be used long term as the side effects suck. I’m in remission right now and taking it day at a time.
    As far as what foods to eat….. everyone is different. A food that helps you, might make someone else feel lousy. Trial and error is the only way to find out what works best for you.
    Best wishes,
    George in Napa

  7. Melissa March 1, 2012 at 8:12 am #

    Hi Karen, I was frustrated as you are, when two years ago I was diagnosed. Last summer I had a huge flare up in Cancun and had to be so careful what I ate. I had enough! I read all I could on line about UC, mostly with sites by UC sufferers. I came across ulcerativecolitiscure.info site. Learned about diet and medicines, etc. He describes in detail what is happening in your body too.

    I was also going to suggest Breaking the Vicious Cycle too. It is very scientific and explains what is happening also. The diet makes sense, no carbs, grains, cooked veggies, no dairy, as a previous person said. We are all different and I still don’t know what sets me off at times but I do beleive the previous items to cause me probems.

    Melissa

  8. Allyson March 1, 2012 at 12:56 pm #

    Im so sorry to hear about the rough time you’re going through right now. I remember being there once myself too. The first few months of my diagnosis were the scariest bc I didn’t know what to eat either. Everyones body is different but the main things to stay away from during a flare up are fresh fruits & veggies and whole wheat products. Those are harder on your body to digest so it is best to avoid them during flare ups. My GI told me to stick to pastas, potatoes, white bread, applesauce…things like that. My word of advice is to not avoid taking medications. A lot of people are going to tell you not to take them but they don’t know your situation or have a right to say that. I believe some people can control their UC with diet modifications and lifestyle changes, but not everyone can. So don’t just not take your medication. Another thing you’ll hear a lot about are diets and natural remedies. Be very careful with these as they can harm your health also. If you trust your GI, please do what he says. I know the medications are scary and so are the side effects, but you have to think about your health. I tried many “natural cures” such as the SCDiet, Digestacure, David Kleins diet…they are all hoaxes and not only did I lose a lot of money but I also almost died from them making me more ill.

    Hang in there and listen to your body. Things may seem hopeless and terrible now but after you find what helps you, you will be feeling much more optimistic about life! It may take some time but I promise things will get better!

  9. Wendy March 1, 2012 at 6:59 pm #

    Karen, my UC came on like yours did -fast with no apparent warning.2 mos. prior, I was treated for an upper respiratory infection with clindamycin and later for a possible C.Diff infection with Flagyl , but didn’t think that had anything to do w/ it because 1 month prior my husband was diagnosed with tongue cancer…stage 4. I believe the stress of that brought it on because when I have a flare now, I’m usually stressing over something. DO NOT LET DOCTORS TELL YOU STRESS OR DIET HAS NO EFFECT ON U.C.! Looking back, what the dr. thot was C.Diff was most likely the start of UC. Prednisone cleared me up, but only after my colonoscopy showed lots of blood and inflammation and a gastroenterologist put me on Asacol (creates edema in my legs) and wanted to put me on 6MP( a chemotherapy drug that the gastro said I’d be on the rest of my life). Needless to say, I’m not on it. They said “You can take this or we can take your colon.” so I immediately stopped seeing them and started researching, ate fresh veggies and fruits, cut out wine, and tools steps to de-stress. I was weak, had joint pains, lost 20 lbs( the only upside), and took the prednisone to get me past the symptoms. Take your time. Get a dr.that you trust and who will listen to you. Use this site. Try foods and see how your colon reacts. Use the SCD as a guide.

  10. Lisa March 4, 2012 at 10:33 am #

    Hi Karen,

    I have had IBD (diagnosis has yo-yoed between UC and Crohn’s) for twenty years, and am currently in full remission–no symptoms at all–on Humira and Imuran (drugs that suppress the immune system). I think I’ve been through every medicine protocol, natural supplement, diet (some drastic), etc. in a quest to feel better. My symptoms came on gradually, until I had an attack somewhat like yours, with a trip to the hospital. I’m sorry you are going through this–but rest assured there is lots of support out there when you reach out for it, as you can see by all the replies you’re getting here.

    I have learned first and foremost to be my own researcher and advocate within the medical world. I notice that you had your attack January 20th and are not being seen by a gastro until almost two months later. Given the severity of your condition, this is terribly unwise and irresponsible of the doctors who were treating you and the gastro you are seeing: you should have been seen right away. There should be some gut infections you are checked for with a stool sample; sometimes these look like UC, but can be cleared up with the right antibiotics. (UC and Crohn’s can’t be definitively diagnosed without a colonoscopy.) In my case, this step wasn’t taken until way down the line, so don’t assume the doc will know to do this. I would suggest that you also be checked for anemia given all the blood loss. I was so anemic at one point I almost needed a blood transfusion, but this wasn’t picked up by my doctor at the time: a naturopath caught it by looking under my eyelids and told me to get tested asap.

    My big suggestion is to find out if your gastro is a UC and Crohn’s expert, as not all of them are. I found my current gastro at a conference on IBD–he was the one giving the talk about all the existing and upcoming treatments and he said to all of us: “Don’t settle for anything less than remission.” This hit home for me as I have had docs who seemed to be o.k. with 6 bowel movements a day with some blood. And I myself have settled for symptoms in the hopes that eventually diet and supplements would do it all. I have finally admitted that for me, this is not the case: I need meds. And there is nothing shameful about taking them. I was lucky enough to find a naturopath who has UC herself and echoed this sentiment–she has to take her meds too.

    In terms of diet I have found that almost everything bothers me in a flare. I do have food sensitivities though, the biggest one being anything in the onion family, but I also cannot eat raw banana or pineapple without getting stomach cramps. I eat no processed foods, refined sugar, sugar alcohols (terrible!) or anything super spicy. But in remission I can eat some raw vegetables, and I do fine with dairy and gluten. I think it’s important to get lots of protein to help my body repair damaged tissue.

    I do believe that everyone’s body is different, so once you’ve gotten some relief from symptoms, pay attention to how your body responds to foods. When you are this sick however, it might be hard to tell. I concur with laying off coffee as it stimulates the intestines; not something you need right now. You probably want to stick to relatively bland and well-cooked foods, and nothing greasy.

    Take good care of yourself Karen, and make sure you find a great gastro who is smart, well-researched, and kind. Keep reaching out for support too, online and from friends and family. I highly recommend counseling or psychotherapy as well.

  11. california karen May 18, 2012 at 5:55 pm #

    well this spell is a bad one and ive even had a smallbowel follow through waiting on reults while givingthe meds again do they ever giv anything different?

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