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Newly Diagnosed and Feeling Lost

Lexie from TexasIntroduction:

I am 27 years old and was diagnosed with Ulcerative Colitis on July 24, 2012. I live in Texas and enjoy watching movies, reading, and spending time with my family.

My Colitis Symptoms:

I am currently having to use the bathroom 4-7 times a day and have blood in my stool. I am also experiencing stomach cramps and pains.

My Story:

I began experiencing symptoms of UC on July 19, 2012. After a week of symptoms I went to a doctor who told me it was most likely a stomach virus and to come back in 4 days if it wasn’t better. 3 days later I scheduled another appointment and they began running tests for parasites, etc. I had two separate doctors run those same tests twice over a 2-3 week period and prescribe me two separate antibiotics before I lost my patience and scheduled an appointment with a GI. After my first appointment he quickly scheduled me for a colonoscopy. After that is when he told me I had UC. He put me on a decreasing dose of Prednisone starting at 40 mg and told me the symptoms should clear up in about 48 hours. I am now down to 30 mg, a week and a half later, and the symptoms have NOT cleared up. I do feel like I have a little more energy and I can get up and move around a little more without feeling like I have to immediately run to the bathroom, which is an improvement over how I felt before. However, I am still having to use the bathroom 4-7 times a day (most often 7), I still have blood in my stool, and I am still continuing to lose weight. Before getting sick, my standard weight was around 125-130, and now I am down to 109. Also, the Prednisone is giving me night sweats like crazy, sore and achy body, and I have to wake up to go pee during the night like once an hour (not sure if that last one is from the Prednisone but it’s happening nevertheless). I tried calling my doctor almost every day this past week to ask if there’s anything else I can do before my follow up appointment (next week) and I haven’t heard back. Ideally all the symptoms will clear up, but at this point I’m really scared about the weight loss. My fiance is being really great and supportive and has done a lot of research for me on different supplements and diets to try. For the past couple of days I have been eating lactose-free pr obiotic smoothies, protein shakes, white rice with olive oil, probiotic yogurt, and bananas. I have also been taking Vitamin D, E, B complex, and calcium. I feel like this diet may be helping with the stomach cramps, but I’m not sure because it also may be the fact that now whenever I experience persistent stomach cramps I go straight to the bathroom. After having numerous accidents at home and one at work, I am at the point where I’m no longer trying to hold it. I guess at this point I’m just frustrated because I don’t know what to do. I really want to get this under control, I’m tired of thinking about it all the time. Because I haven’t had my follow-up appointment yet I’m feeling really lost about UC and what I can do. Sometimes I feel like I’m being whiny because I know that my case isn’t as severe as others, but I’m just so frustrated. I want to stop going to the bathroom and I want my weight back! I’m also wonderin g what the next step will be since the Prednisone doesn’t seem to be working.

Where I’d like to be in 1 year:

In 1 year I’d like to be in remission and not thinking about UC all the time.

Colitis Medications I’m Trying:

I’m currently on Prednisone, but I don’t think it’s working.

written by Lexie

submitted in the colitis venting area


15 thoughts on “Newly Diagnosed and Feeling Lost”

  1. Hi Lexie. First, thank you for sharing your story. Second, you are not being whiny . You are still experiencing symptoms while on a drug that is meant to clear up the inflammation that causes ulcerative colitis. Many of us have been there in some capacity with one medication or another. Third, I am concerned you are taking prednisone and still bleeding/losing weight. While I can’t tell you what to do with it, I would see if I can get a second opinion from other doctors in your area…maybe one that takes a holistic approach to treating UC. Curiously…what time of day do you take the prednisone? Taking it later in the day may be having an effect on the night sweats but do not change the time without checking with your doctor. Peeing a lot is normal but may also be lessened if you watch your salt intake.

    So you are already trying supplements and a few diet changes? That is good but as you said, some choices might be affecting you in a negative way. No worries. I have been sick for much longer and sometimes I feel like I am still learning about this illness. Have you thought about getting Adam’s book here on the site or the book Breaking the Vicious Cycle? If not, I would think about getting one of them and going from there. Although I haven’t read Adam’s book, I think he covers the SCD diet. BTVC discusses the SCD diet, how our bodies are struggling, and what we can do to change our gut bacteria to keep the inflammation away, etc. Even if you do not want to go that route, you will learn lots of valuable information.

    If you do get the book but want to make changes prior…the intro diet is right on the BVTC site and not too hard to follow. It basically is a 2-4 day period where you eat certain foods to starve the bad bacteria in your gut. From there, you add foods in and find out what works for you. That information can also be found around the web, is a great resource. The good news is, if a food does not agree with you now, it does not mean it will always stay that way. With time and healing, more foods can be tolerated. I’m in the midst of beginning the diet myself. At first, it is best to move slowly and listen to what your body is saying. If you do happen to check out the diet, make sure the supplements, vitamins, etc…are all SCD legal. IF they are not, as silly as it sounds, avoid them and find ones that are(illegal supplements will have additives that feed bad bacteria and you want to avoid that). It will make a difference.

    I realize I jumped right into SCD as a way for you to possibly get better…and the reason is because the medicines never liked me. I also can’t fathom taking medications that cause their own nasty side effects or suppress my immune system when my immune system is key to my survival. The medications never treat the underlying cause of this illness and I believe in doing that first if I want lasting health. Hope you understand.

    Well, I hope I helped somewhat. All I can say is do not lose hope. I know what you feel like right now but it can improve and you can reach a point where you will not have to think of the bathroom constantly. It might be through medication, holistic treatments such as probiotics, or diet/lifestyle changes but you will find a way. Best of all, you seem like an awesome person who can beat this and with supportive fiance to boot. All that will go a long way. :)

    If you have any questions, we’re all here to help! Best of luck and keep us updated. Steve

  2. Hi im April and have had UC for 22 years, i am now 33 years old and have had similar problems , and worse. Prednisone does work for me, but i have heard people say it doesnt work for them, it might take some tiem to find out what does work for you. I know there are other medications, i was on Asacol right from the beginning when i was 12 years old. That is something that works and i have been on all my life. Immuran is another medication that works for some people, also Remicade is an infusion that people get every 2 months and that works also, with no pills to take. Its based on what you want, but definately do some research on what you want to suggest to your doctor and he will give you advice and what his opinion is.. keep yourself in control of your body, dont let this over come you… Hang in there.. It is an embarrassing disease but we push through it and do what ever we have to do to have a normal life. I have learned over the years what foods bug me,, most people stay away from green foods becasue of cramps and gas. Gluten free foods are great and also wheat free . Stay with white foods and figure out what veggies and fruits are ok with you. But i do hope everything works out for you and good luck.. If yu ever need to talk let me know. Or message me on facebook
    April Lavoie-Legrand

  3. Chris from Massachusetts

    Hi =)

    I have had it for a year – definitely good days and bad days. One big thing I had to learn is accepting what I like to call the “New Normal”. That was hard for me because I kept trying to go back to the way life was before I was diagnosed – all I can say is keep hoping, stay positive and above all take care of yourself!

  4. From what I read, and what my daughter has been through- everyone responds differently to different medications. And, what worked for you for one flare, may not work for the next flare. It’s an ongoing process of trial and error.

  5. Hi April

    I live in Texas too. In Dallas for now but moving to Houston area (Cypress) in a month due to hubbys work. I have uc and its been 2 years now. I have never used ANY drugs are ememas for UC just great eating habits. Works for some and not others. So far have had great results with SCD eating only. I meditate too which really turned it around for me to another level. I cold turkey one day decided this disease wasnt gonna consume me and I let me tell you EVERYTHING made a 100% turn for the better. You have so much great info on this you have to decide which path to take… of luck to you and I’m sorry you have this condition. It’s NOT the end of the road. Plenty of support on here on Adams site. :)

  6. Hi April,
    Sorry to hear you are going through this and a bit surprised that your doc didn’t put you on something like acacol along WITH the steroids. That’s what my doc did. He put me on 30 mg of steroids until the bleeding completely stopped and THEN he weened me off slowly. The Asacol helped with the multitude of bathroom runs. I was going about 20x/daily and had so much cramping. I was up several times during the night and got hardly no sleep. It was awful! Once you go into remission, you will definitely have to look into dietary changes. Everyone is different. I checked out the SCD diet, but being a vegetarian makes it even more difficult for me. Hope you start feeling better soon. If you would like to chat, feel free to contact me.

  7. Hi April and welcome!

    Please try a 50 billion strain probiotic. One per day. For at least 2 months. You will feel the difference.

    I did that and every symptom (urgency, pain, many bowel movements per day) went away, except for a bit of bleeding. I then asked the clerk at the vitamin store what I could take to stop bleeding. I was recommended L-glutamine, and astaxanthin (a natural anti inflammatory). I have no bleeding now either!

    No more symptoms…and without all the UC drugs that I was on for 13 years! These three things cost me about $50 per month. The UC meds were costing me 10 times that…around $500. Theyt did nothing except makew me feel worse and more sick. I am off all of the meds now and feel great! It cannot hurt you to try these…they are harmless!!

    I promise you…things will get better. You just have to find what works for YOU.

    Cheers, and happiness,

    1. Whoops! I mean HI LEXIE!! Sorry…I don’t know why I called you April!!

      WELCOME TO THE SITE…you will find happiness here!!

  8. Agree with other commenters… surprised you’re not on Asacol or Lialda. Both worked well for me… I had to turn to prednisone to finally kick it to the curb, but couldn’t have done it without the other meds. Also agree with the probiotics.

    Sounds like you’re on a very simple diet which is good. For weight gain you might try a calorie supplement like Carbo-Pro — I’m a triathlete and so I happened to have some on hand. Great stuff… flavorless calories you can add to any beverage or soft food like hot rice cereal. Also add avocado and creamy almond butter to your diet. Lots of good fats to keep weight on! Just be sure to keep out anything that causes inflammation: caffeine, gluten, dairy, sugar, alcohol, etc. You could add hot rice cereal with honey for breakfast… that’s easy to digest. No raw or fibrous veggies but cooked green beans always worked for me. And lots of salmon.

    good luck!

  9. UCinNYC

    Hi Lexie! I’m in very much the same boat as you: newly diagnosed, started Pred at 40mg and tapering, and it’s not working. I totally know how frustrated you are! I’m glad your fiance is supportive. My husband has also been great, and it makes a huge difference having a supportive partner. I don’t have much else to say because I’m new at this as well, but I’m glad you’ve at least found this place. Seems like there’s lots of support here!

  10. Hey Lexie! I am copy/pasting most of this comment from another one I just typed bc I hate typing on my iPad but just wanted to give you a little hope. This disease sucks but i try to remember that it could be so much worse. I Have 2 friends battling some pretty severe cancers right now and at most I have some pain/blood/diarrhea. Yeah, it gets bad sometimes but it is ok! In my opinion you are in the worst part of it–it is all confusion in the beginning. I remember getting myself under control and then not knowing when I could expect another flare or what to look for. I am 4 yrs in now and can almost always tell when one is coming. And if it is any encouragement, I’ve only had one bad one in the last 4 yrs. the others have just been mild. If you decide to go the medication route, there are a ton out there that will help. I was on 4 different ones up until March of this yr. Long story short I got scared of some of the side effects and came off of 2 of them. I am still on the anti-inflammatories but am mostly trying to control this wi my diet. My doctors NEVER told me to start watching what I eat but lo and behold- what I eat, affects my intestines!! Crazy, huh? It took a lot of trial and error (still does) but I HIGHLY encourage you to do some research on the Specific Carbohydrate Diet (SCD). It has made a WORLD of difference in my life! Is it easy to follow? Not always but it is worth it. I am an extremely picky eater and never have liked vegetables. It is taking some learning on my part but I wouldn’t change it for the world! Another thing you might want to look into is low dose naltrexone. It is still a new thing but i am on it and doing pretty well so far. if you want to talk, please please email me! ashley.atkins516 (the at sign) gmail (dot com). And please excuse the typos.

  11. Hi!!
    I can totally relate with you,on so many levels. I remember the cramps and the urgent run to the bathroom,almost a second after taking a bite of toast. I agree, it sucks!
    As far as the prednisone I recall the night sweats. They are terrible!Do you have to get up in the middle of the night and change your shirt??
    I feel like it takes time for everything in your body to get back into normal mode. Mine took about 3 weeks,before I was able to eat a complete meal. Were you going to the bathroom more than 4-7 times day before,you were actually diagnosed? Or Perhaps,what you are currently eating,is not jiving with your system. I suggest keeping a food journal, and noting what you feel going on inside,and other bathroom runs:) yuck,they are more like this :S You get the idea.

    One more thing , I found Boost to be a big help. It is packed with vitamins and minerals.Chocolate is my fav,it tastes like a milkshake,Just make sure you drink it COLD.
    Hope this helps,
    If you need anything,let me know.
    I know it feels like you not improving,but believe that you are. Positive thought goes a long way. I am sending positive energy to you,along with a BIG HUG!
    You are not alone! We’ve all got your backside.
    Much Luv,

  12. So sorry to hear that you are still having sypmtoms even after the prednisone.

    I am a new UCer as well. Im just now down to 15mg of prednisone (my symptoms started coming back after 25mg, but had me feeling kinday nutty at 40mg)

    Research has helped me alot…. there is alot of info out there. Not everything works for everyone since we are made different. I have started trying some herbal things to which what meds I take(porbiotics,garlic)….sorry if I cant be more help to you on what is next after prednisone (i might tell you in tuesday (8/21) see GI doc). Just know you are not alone….. Good luck to you and getting your UC under control!

  13. Braj

    My foremost suggestion..Try naturopathy , stay there for at leats 15 days.. They will take care of your diet, excercise , meditation, stress mangement which is most important ..All the best..

  14. I was diagnosed as having Crohn’s disease over 30 years ago, although based on family genetic history I probably have had it from birth. I’m 69 years old. That information is only to tell you from my own experience that you can live a very decent life with C’s or UC. Certainly by now I have considerable experience living with an inflammatory bowel disease (IBD). I have seen, read, and heard many philosophies and recommendations for IBDs. Don’t get involved in trying ‘many’ things. Pick a few that make common sense and don’t seem strange. Do some research yourself on recommendations, from that free library the Internet. Vitamin D is more and more being recommended for IBD. I take 1 small gelcap of 5,000 IU daily of Vitamin D. I think Omega-3 oil gelcaps are helpful too; I take 2-1200 mg gelcaps twice a day [4 total]. I take 2 Asacol EC 400 mg tablets twice a day [4 total] (this is an anti-inflammatory drug). Initially I was put on 6 Asacol EC 400 mg daily but reduced after a few years. You have not yet been given the opportunity it seems to be put on a daily anti-inflammatory drug which should be most helpful. It is common to knock down the inflammation with a steroid such as Predisone initially, or when your inflammation needs a little extra help. You may know you should not be kept on these steroids. After many years of initially going to various gastroenterologists, it is my belief that there are a small % that are ‘very good’. Keep trying various g. specialists if you are not satisfied until you find a very good one. The good ones usually also have ‘common sense’. I was thought to have UC for awhile until a very qualified radiologist pointed out to my g. specialist that a few particular things noticeable in the intestinal wall from a colonoscopy were indicative of Crohn’s and not ulcerative colitis, at which point my g. specialist said “Sure, I agree”! Within a few months I left him and have been with a v. good gastro doc for the last 15+ years.

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