Ulcerative Colitis Tips


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Newly Diagnosed with Colitis

JonoIntroduction:

I have just been diagnosed with Ulcerative Colitis last week (Mid January 2013). I’ve had six months of stomach problems which have been getting gradually worse. Six weeks ago I got really ill and I had constant diarrhea throughout the day and night. I lost my appetite, all motivation and felt terrible. I was an extremely fit 24 year old man weighing 12 stone 8 lb who exercised 4-5 times a week and played Football to a high standard. That was just 6 weeks a go, I’m now 11 stone 4 lb. I have lost a considerable amount of strength and muscle and I have had to take a break from playing Football.

Some more about me:

Most people would describe me as a easy going person who enjoys life and has a good sense of humour. I have a passion for health and fitness and I am a health trainer working for the NHS in Essex, England. I love playing sport, particularly football, and going to the gym. I have always looked on the positive side of things and have always striven to be the best I can be to fulfill my aspirations. I am currently trying to stay positive and not let my diagnosis of UC affect my life but I am worried it may have a negative effect on my confidence levels and prevent me from doing the things I want to in life.

Current Symptoms:

I currently have stomach cramps and bloody diarrhea throughout the day and night. On average I am currently going 15 times a day. I have a constant headache and I am always tired. I have lost 7lbs in the last week and I am lacking the energy and motivation to exercise.

Newly Diagnosed with Colitis

Six months ago I started to notice blood in my stool, I wasn’t too alarmed and put off going to the Doctors. Things got gradually worse and I started to have an urgent need for bowel movements and I was getting woken up 4-5 times a night to go the toilet. Six weeks ago I got really ill, I had no appetite, felt terrible, had a constant headache and the frequency of my bowel movements got worse. I was being woken up 10 times a night with diarrhea so I was severely sleep deprived and I was too tired to go to work. Since I felt terrible and the frequency of blood in my stool had increased I went to the Doctors. I was told it could be IBD or IBS. My blood tests showed a raised inflammatory marker and I was referred to a Gastroenterologist. However the appointment was not till March 2013. Over the Christmas period of 2012 I was getting worse. I went to A&E in Cambridgeshire, had more blood tests and I was told “it’s nothing urgent you need to wait for your appointment in March.” To me it was urgent, I couldn’t live a normal life and I was losing weight and I was surprised how quickly they just dismissed my issues. A week later when I was back in Essex I went to my GP and he rang the hospital to see if I could be checked over again. I went to the hospital straight from the doctors and after more tests they decided to keep me in. I was in hospital for six days after again finding that my blood inflammation markers were high and that I had iron deficiency anemia. I had a flexible sigmoidoscopy and I was diagnosed with UC. In a way I am relieved I finally have a diagnosis so I can receive the appropriate treatment but I am also shocked that I was expected to wait until March before anything could happen!

I am now concerned how UC will affect my life and particularly my ability to exercise and play football. Since I am newly diagnosed I have so many questions and worries I can’t list them all. I am worried I will never get in to remission and if I do I am worried I will have regular flare ups several times a year. Am I going to have to drastically change my diet and give up alcohol? When you were newly diagnosed was there anything that helped you come to terms with the disease and did you find anything that helped you begin a successful road to recovery?

Medications

I am currently taking Mesalazine, Prednisolone and Mebeverine.

I am going to be tapered off Predinsolone quickly and I will be only taking it for a month. Reading the side effects and people’s experiences of this Steroid I feel quite relieved that my Doctor has only prescribed it for a month.

written by Jono

submitted in the colitis venting area




7 Responses to Newly Diagnosed with Colitis

  1. Angela February 14, 2013 at 6:59 am #

    Hi Jono!

    Sorry to hear about your diagnosis, but yes it is a relief to know what’s the problem! I am also 24 and was diagnosed over 10 years ago (coming up on 11 in April). I’m glad to hear you’re trying to stay positive, it’ll help considerably! UC won’t ruin your life, as long as you want to do something you will! I played two varsity sports in high school with UC, I scuba dive, and I’m an avid hiker. I’m from the U.S., but still studied abroad for a year (London was one of my cities and I miss it!)So you can still do everything you want!

    I came to terms with it very quickly, my doctor equated it to being similar to diabetes…there were going to be a lot of meds, diets changes, etc. and in that light its not that bad. I also have had family members with diseases a lot worse than what I had (my uncle passed away from Lupus) and that always puts things in perspective. So my recommendation is to change your mindset on it. UC is just a speed bump not a wall, and everyday it’ll make you a stronger individual because everyday you’ll find ways to beat it. Yes some days it’ll suck, and yes you’ll have low days (which we’re entitled too).

    You will make a diet change but it doesn’t have to be the SCD Diet. You’ll need to find what works for you. I don’t touch artificial food colorings, and I just don’t eat pre-packaged meals. I cook fresh constantly. I do watch my sugars and carbohydrates but I’ve never eliminated them. I did finally stop drinking alcohol because beer (all those carbs!) affected my UC and wine just plain gave me headaches (unrelated to UC), hard liquor seems to be fine in moderation and mixed in drinks. It’ll prob be best to avoid it during flares. You just need to find what works for you! And keep staying active it’ll actually help make you feel better and minimize joint pain.

    My biggest recommendation is to READ EVERYTHING about UC. But do be carefull with somethings on the internet (this is a great site for info) but also read things put out by researchers and doctors. Start with the website UpToDate (hopefully you’ll get it in the UK) and look for published research papers! The more you know the less scary this all is and also you’ll have better conversations with your doctor leading to better care and the most appropriate treatment!

    http://www.uptodate.com/contents/ulcerative-colitis-beyond-the-basics?source=search_result&search=Ulcerative+Colitis&selectedTitle=1~17

    Make your doctors work for you! If you’re not happy with your care tell them (you’re paying them anyways!) or get a second opinion! It’s your health not theirs. Also, get a GI (gastroenterologist)and not a GP. When I was in London I saw Dr. Stuart Bloom (he was there if I had problems while being abroad) and I really really liked him! He has both private and public privileges. So see if you can get in with him.

    http://www.drstuartbloom.co.uk/

    Good luck with everything! I’m wishing you the best!

    Angela

  2. Kyle
    Kyle February 14, 2013 at 11:42 am #

    First off welcome to the wonderful world of UC. You asked a lot of great questions, all questions that I also was asking myself when I was first diagnosed. Let me first tell you that it is not the end of the world, life will return back to normal, you will be active again, you will play football again, you will be back to your new normal self : ) I always like to say new normal because life will look different. Couple things I love sharing with new UCers #1 you are not alone, you are not the only one going through what you’re going through, there are many others, so get connected, find someone you can talk with, even if it’s just connecting with people through this site, have people you can talk with about what’s going on #2 It’s not the end of the world, you will be able to be “normal” again, sometime flares can be a beast and knock you off your feet for a bit but you will be back. I am also highly active and 5 months ago I got out of the hospital and could barely walk, now I am back to working out, playing hoops, being active again #3 you may have a disease, but it doesn’t define who you are. Don’t let UC be all you focus on, getting things under control is super important but you gotta keep living your life. There may be days that you have to lay low and that is fine, but continue pushing yourself to be who you want you to be.

    As far as diet, I have cut out fried foods, dairy, caffine, anything too spicey, too much sugar or starch, and I don’t drink, but I stay away from Alcohol. You gotta learn your triggers and eliminate them. Yeah that can be hard, but I’d rather not have a bowl of ice cream than be blowing it up for a week in the bathroom.

    Hope this helps. Keep your head up, it does get better!

    Be Well

    Kyle

  3. Bethany February 14, 2013 at 3:54 pm #

    Hey Jono,

    Welcome to UC! I also am also fairly recently diagnosed (Oct 2012) at 22 and I went very quickly from 0 to 100 in a matter of 2 weeks and ended up spending three weeks in the hospital and at two seperate hospitals with the threat of impending surgery. Much like you I was a pretty active, healthy individual. I am a paramedic and lieutenant for my rescue squad and live a fair hectic fast pace lifestyle so needless to say it hit my like a ton of bricks to be confined to my bed or toilet for so long. I am to this day still in recovery. I dropped a total of 25lbs while in the worst of my flare and have gone through three seperate medications since coming out of the hospital and dealing with the side effects. It’s only been within the last month that I have been able to return to work and even slowly at that.

    The best advice I can give you is to keep your head up. It’s not easy by any means. Keep a good solid group of people around you to support you and help you when times get rough because there will definitely be bad days. I wouldn’t have made it through the last few months without my fiancee, my mother, and two of my best friends. Having a proverbial shoulder to cry on or just a helping hand/warm smile when things get tough is really helpful. Also, watch your diet and mind your doctors. THere is no way to say if you will get another flare or when it will happen. It’s a matter of keeping your head up and taking it one day at a time. Don’t overstress or overwork your body too early either. It needs time to heal and recuperate. Go for walks, try a slow resistance work out, but above else GET SLEEP! Sleep has been my best friend through all of this.

    I really hope some of this helps. I, myself, am still learning and having to remind myself of these things on a daily basis because I’m still not up to a 100% and it can get highly discouraging some days. Keep your chin up and remember there is a light at the end of the tunnel.

    Bethany

  4. Jono
    Jono February 15, 2013 at 11:53 am #

    Hi Angela, Kyle and Bethany.

    Thanks for the advice, it’s really helpful and I appreciate it!

    It’s been nearly four weeks since I was discharged from hospital and I’m feeling OK. I’m back at work, becoming more active and I’m enjoying life again. However I’m not getting carried away because I come off prednisolone next week and I don’t know how that will affect me and whether the unwanted symptoms will start to return.

    I hope you are all currently well and once again thank you for the advice.

    Jono

    • Jono
      Jono March 1, 2013 at 6:49 am #

      So I stopped the prednisolone and within a day the bleeding and unwanted symptoms reappeared. I’m back on a 5g a day dose which seems to just about be doing the job. I’ve also started pentasa enemas and ferrous sulphate. I have managed to gain back the weight I lost but I’m still struggling with fatigue. Hopefully another couple of weeks on Prednisolone will be enough before I can stop it again.

      Have any of you been on a long term, low dose of Prednisolone and if you have, have you had many side effects?

  5. Angela March 1, 2013 at 7:05 am #

    Hi Jono,

    I wasn’t on prednisolone, but I was on prednisone for a very long time (20mg straight for 3 years). Prednisone is converted into prednisolone by the liver from what I understand so the drugs are similar but no the same. I’ve since lost all the weight I gained while on it and the “acne” side effects go away. The side effects that don’t are typical of long term use of any steroid and those are moon face and a slight buffalo hump which don’t really go away. The only way to manage that is to always taper off the steroid often or just don’t take it. You really don’t want to get into this cycle of constantly going back to steroids or staying on them. I recommend to keep trying new meds if the other aren’t working so you can get off prednisolone. Remciade was the only drug that was able to get me off of prednisone.

    I hope you feel better!

  6. rjw March 1, 2013 at 10:03 am #

    I will paste what I have told others. Best of luck.
    Seems everyone is going to have a little bit what works for them advice. I imagine you have got to find it out for yourself with this website as one of your main resources what will work for you.

    Maybe you can look at what others have done and see if that works. FMT “Fecal Transplants”. EVOO Extra Virgin Olive Oil. Vit E emenma’s. Other blood and stool tests for floral imbalance or even C-Diff. Have you been tested for C-Diff? Find out what your inflammation numbers are with the blood tests SED Rate and Non-Cardio CRP. Get you anemia and Iron checked. Dont forget the tests to check your different B Vitamins and D as well. I will not recommend it but some people have even gone back to or started smoking as apparently it is starting to come out that nicotine can help keep symptoms at bay even for some Crohn’s patients. Research and try that is my advice. This website has people talking about all of it. Do what you can to minimize RX especially steroids, TNF inhibitors and surgery. If all fails well you can always go RX route. There seems to not be a magic bullet yet but depending on your own individual chemistry there seems to be a good chance that you can minimize “flares” with many of thee alternatives and keep your condition at bay. But remember none of us are in your shoes so advice is cheap but you have to live with whatever choice is made. Personally, I would go out and buy the best EVOO you can find. Read on this website the section healing with Olive Oil. Add the other nutrients and probiotics like VSL#3. Look at the diet the posters keep referring to. Start researching FMT. And get your different blood and stool tests done especially to start with C-Diff. It is my experience you have to manage the doctors not let them manage you. Often they can not prove what it is and so they are going off of observation or what they think is going on and presenting it to you like it is fact. So ask for the different tests. There is another test that the Mayo Clinic does through your local office or hospital called the IBD Panel. Best of luck.

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