Ulcerative Colitis Tips


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Just Turned 34 – Diagnosed with Ulcerative Colitis – Confused/Lost

Intro:

I am from London (UK), born and raised and just turned 34. I am well traveled and I am proud to have friends from all walks of life, countries and backgrounds. I like technology, cars and generally bit of a big kid. I always try to help people in life in whatever I do.

I have been diagnosed with UC on my left side and my rectum 3 weeks ago.

Some more background info on Deen:

From birth – 30 I was allergic to … Milk, Egg, Fish, Chicken so I spent most of life eating Lamb and Beef daily.

3 years ago blood and skin prick test said egg with small amount of milk in coffee/tea was fine.

Thus I changed my diet, with meat 2- 3 times a week, Lunch was – egg spinach, cucumber, corn, olives, tomatoes, Dinner was rice with veg curry or pasta or something healthy of some sort. Ps I love chips (french fries) and crisp (potato chips) but I cut down massively in the last 3 years too.

Weekends used to be about eating out, Steaks, Italian, Indian, Chinese, Turkish, Thai, Grills and Mexican….. how I miss my meat platter.

My parents are originally from India thus fed me curry most of my life, as a result I had a very strong stomach (loved spices too), thus I could go to a spicy restaurant, be fine the next morning whilst everyone else would be in the toilet.

I never had a sweet tooth due to milk allergy but did drink a lot of soda, energy drinks and coffee (high pressure jobs for the last 8 years) but even that I cut that down massively 2 years ago too.

Symptoms:

Due to prednisone the blood and diarrhea has stopped, but now I have cramps, wind, tiredness and it seems like constipation….

Deen’s Story:

I smoked for 15 years, 7-10 a day. Quit 4 years ago, then restarted on and off 2 years ago and for the last year was on ecigs, still socially smoking normal ones here and there.

I left my job 6 months ago and have not been working since. I went through 20 months of hell with 9 of my team members walking out after me. Many were considering legal action for bullying but as I believe in Karma I walked away…..

I got to the final of nearly every job interview but something would prevent me from getting it. Usually a small thing thus became stressed, I even got offered a job then had it retracted due to a new recruitment freeze.

I started having diarrhea in mid september 2015, becoming blood diarrhea. I took imodium (BM 2 times day). The doctor (GP) said nothing to worry about, it will probably clear by itself. I was waiting to be referred to a specialist but this wasn’t till November 17th. In mid September had changed my diet to BRAT, Bananas, Rice, Toast and Mash potatoes.

I went to the local hospital and they said as “its only blood diarrhea twice a day and no other symptoms, go back to a normal diet and enjoy your holiday”. I decided to stop worrying and go to my friends wedding in Morocco in late October, I ate normally…. (Moroccan food was lovely)…but by then it had become 6 times a day and it was often just blood, lots of wind and cramps.

Came back saw a private GI specialist who was horrified by my blood and stool results. She said I should have had a colonoscopy back September, she arranged for one later that week.

After a few days I was rushed to A&E (aka ER in USA) as I had severe pain in kidneys/stomach and going 9 times a day, mostly blood.

I was put on hydrocortisone IV drip for a week and had a colonoscopy a week later whilst in hospital. They found I had colitis on the left side and a severely inflamed rectum….. It took a week for the Prednisone to kick in and it stopped the blood and diarrhea. Then after a week the bleeding came back a little so they gave me Mezavant (and asacol suppositories). I was taking Aloe Vera juice at the time so I stopped it.

I read up on everything I could find on UC, I tracked down people I knew of with UC, spoke to university friends who are now doctors, I have just discovered the SCD diet but as I am allergic to fish, chicken and turkey I’m not sure if I can do this….

I have lost 1.5 stones(9.5kg) and feel weak. Im 5ft 10 and now I only weigh 9 stones now. I used to be full of energy, full of life and always making people laugh. I am now quite, miserable and can’t concentrate on anything.

I’m confused by people saying so many different things regarding diet, I don’t know what to do anymore.

Any advice / tips / help / guidance / support will be greatly appreciated. Thank you for taking the time to read this.

Medications & Diet:

Mezavant XL- 4.8g a day (mesalazine)
Ascol Suppositories 500mg only twice a week if there is blood or I feel sore
Prednisone – 30mg 2 weeks, currently on 20mg for 2 weeks, then 10mg 2weeks, then 5mg two weeks
Omeprazole
Wellman Multivitamins
Adcal-D3 Calcium 400mg twice a day

Currently my diet is banana’s, 2 egg omelette, rice, potatoes, carrot, corn flakes, a ton of water and cigarettes. I ensure turmeric and Extra virgin Olive Oil are in my dinner/lunch. I have also ordered some probiotics VSL#3.

written by Deen

submitted in the colitis venting area




smoking

28 Responses to Just Turned 34 – Diagnosed with Ulcerative Colitis – Confused/Lost

  1. paul mcguire December 12, 2015 at 7:51 am #

    Hello Deen

    sorry to here your story and its so frustrating to try to get some advise that helps….I myself have been living with UC for many years, Im 49 next week and have been episode free for 1 year. Diet advise is simple eat what you can stomach, I myself cut down on meat and eat more sea food but like your self found it hard to cut out meat completely…fresh unprocessed food if possible…lifestyle choice….remove yourself from a life that causes stress….it is that simple….exercise is key to me and has helped me to overcome the pain. Im afraid no case is the same and you have to find through trial and error what is right for you

    Im off all medication now and supplement my diet with probiotic tablets,hemp oil.

    one lemon,ginger,1/4 tea spoon of bicarbonate of soda in hot water every morning.

    I hope this helps

    P.S my UC only got worse when I quit smoking so I have one or two cigs every now and then

  2. Shannon M
    shannon December 12, 2015 at 8:45 am #

    Deen…..so sorry to hear about your diagnosis. I was diagnosed at the age of 65 when I was just entering my wonderful retirement years. At first I was diagnosed with UC and now my Dr. At Stanford has said I have Crohn’s, although the my last MRI showed I probably have UC. I was so glad to find Adam’s website. It has been a lifesaver. My Dr told me that there was nothing dietary that involved UC, although I know now that is totally not true. I went to GF and have now gone to Paleo. I am re-thinking my Paleo choice, as I am starting to not feel well again and I think it is all food related. My flares have stopped because I was put on 40mg Prednisone for 7 days and I am progressively coming down on the Prednisone and going up on the Sulfaziazine. The Sulfaziazine has given me really bad headaches, so I have started reducing this medication a bit. I hope you can find some peace in your diagnosis with food/exercise (no smoking/caffeine). Waiting for my Tumeric to arrive and will definitely be using that every day. Good luck to you!!!

  3. Tim December 12, 2015 at 11:08 am #

    Hi Deen

    Buying VSL is expensive and you should be able to get it on prescription – I certainly do.
    Dietary advice is a hard one and so many people have different experiences. I’m good on the SCD diet but not everyone has the same reaction and with your have-nots you’re going to have a much reduced diet. I wish you the best of luck and this website is a fantastic resource.

    Tim

    • Mk December 13, 2015 at 2:51 pm #

      Thank you Tim, I asked my IBD nurse but she said no. I’ll try again through my GP. I can’t believe how expensive it is.

  4. Mk December 12, 2015 at 2:02 pm #

    Hi Shannon and Paul,

    Thank you both for your support and sharing your experiences with me.

    Paul I’m really pleased to hear you seem to be on top of it now and remission. How long did it take you to come off the meds and achieve remission?

    Could you tell me a little more bicarbonate soda?

    Shannon I wish you the very best with the new diet it must be horrible having this when entering retirement. I have read many good things about Tumeric and I know that it has many healing properties however there seems to be a debate upon quantity.

    Have you tried the SCD diet yet?

  5. Sue December 12, 2015 at 2:21 pm #

    Hi Deen,
    I have been diagnosed with UC last year. I am currently taking salazopyrin, two tablets twice a day. (No more prednisone). I don’t eat anything with gluten, wheat or dairy. I avoid night shades vegetables (eg. Potatoes, eggplants, tomatoes etc.) and rice and anything with sugar. I also avoid anything spicy or acidic.I take slippery elm powder before I eat and once a day I take cabbage juice (check YouTube or online for the benefits). I also take a strong multi vitamin and vitamin d. I follow the food combination system from Sherry Breschia. Am now feeling much better.
    Hope this helps.

    • Mk December 13, 2015 at 3:02 pm #

      Thanks Sue, I’ll look into the food combination system too. Glad to hear that your in remission

  6. Ravi S Pandey December 12, 2015 at 6:02 pm #

    Prednisolone will definitely control your symptoms.If tapering off prednisolone brings back the symptoms, your doctor will start immunosuppressant like azathioprine,methotrexate etc. If they do not help,biologicals will be required.Drugs are the mainstay of treatment. Diet worsens or improves the symptoms but does not affect the natural course of the disease.Take adequate protein,calorie,water vitamin, mineral and low fibre diet during exacerbations,Have a food diary.After episode is over, you may need supplemental iron with normal diet.DO NOT STOP MEDICINES AFTER REMISSION.Remember the first episode of UC is usually the most severe one. If you are depressed your doctor will prescribe antidepressants like escitalopram and counselling.During episodes extra underwears help. It is useful to be overweight between the episodes

    • Shannon December 12, 2015 at 8:41 pm #

      Hi Ravi,

      I was just diagnosed with Ulcerative Colitis in Sept 15 2015. I was put on Asacol which caused me to have my first flare. I was able to get it under control with Prednisone. I had tapered down to 10 mg and my GI was started me on Pentasa as a maintenance drug. As soon as I took it, I went right back into numerous loose bowel movements. I figured the same thing was happening as with Asacol so I stopped taking it. When I went back to my GI, he said he recommended that I go straight to Humira. I would prefer to not go straight to the biologicals but I don’t know what other meds I could go on if Asacol and Pentasa make my symptoms worse. I was just wondering if you have heard of any one else having issues with Asacol and Pentasa but finding success with another maintenance drug that isn’t as intense as a biological? I’m supposed to meet up with my GI next week with my decision because as we all know, being on Preds for a long time is not good. Thank you so much.

      • Still got my guts. December 30, 2015 at 3:46 pm #

        Hi, Yes, I have had serious problems with Asacol, I have very severe colitis when I flare, and could not get it under control with asacol/pentasa despite increasing doses when I was first diagnosed. It went from a tiny bit of blood on the paper, to bowel-movements consisting only of gas, and intense cramping. I told the Dr I felt asacol was exacerbating my symptoms and they disagreed, I had to stop taking it as I knew I was right and they just wouldn’t listen despite my symptoms worsening with every dose increase, and lasting~9 hours from every dose every time. So I stopped that and was able to gain remission within 3 days. I was put onto Cyclosporin to do so, and have maintained with 6-MP alone after bridging therapy, that kept me out of hospital but I still had symptoms, had my appendix out last year, still on 6-MP but have no symptoms at all anymore, total remission, minimal side effects, my hair is thinning, and it used to make me nauseus, but so does colitis, and I only have one BM a day now, eat whatever I want, etc. I think if I totally addressed all of my diet I could possibly stop 6-MP eventually, say after 2-3 years of total remission. BTW I have remission despite having a daughter born three months after my first hospital admission, and am also studying a double degree in biomedical science (to give you an idea of the stress-load I’m under whilst still in remission) I have three papers to complete to get this degree, and I did it all after my first hospital admission. Long story short, see if AZA/6-MP might work for you, but if you need them, use the biologics, losing your bowel is no cup of tea, and that’s the step after biologics if those fail.

    • Mk December 13, 2015 at 3:12 pm #

      Thanks Ravi,

      I naturally have a high motabalism so I struggle to put on weight. In terms of my mood, I suspect that would improve once I am working, I have lost 1.5 stones so I’m thinking of how I can gain weight again.

  7. jim December 13, 2015 at 3:41 pm #

    I’ m 47 year old Male.

    I was diagnosed 7 yrs ago with UC. Going to bathrom 25 plus times per day, checked myself into ER, bloody stool every day….Very depressing

    Long Story Short…….Tried ALL medications. I have been off all medications for 2.5 years. Controlling my UC with Diet and Sups.

    Currently I take 5000 -7000 mGs Vit D, Garden of Eden Mulit, Garden of Eden Probiotic (1 in morning and 1 at night)..SCD diet worked for me. Currently my Diet is not perfect but I am in a pretty good place.

    Jim

    If interested…call me at 314 591 6396. I will tell you everything I know.

    • Mk December 15, 2015 at 2:48 am #

      Thanks Jim, really appreciate the advice and sharing your experience. Happy to reach out to you. What time zone are you in?

  8. Nora Marks December 13, 2015 at 11:17 pm #

    Hi Deen-So this is what worked for me. I was in a 4 year flare that would not remit. I did not want biologics due to the side effects and cost, prednisone made me crazy, Asacol gave me ringing in my ears. Canasa suppositories helped but I was only as good as my next dose. I was between gastroenterologists and I tried the SCD diet, hoping it would not work. Well, it did, and between it and the Canasa, I am in remission after only 3 months on the diet. I noticed the difference within about 5 days, no bloating, more regular BM’s, many fewer urgency events, the bleeding stopped. I stick close to the diet with very minimal cheats, usually an almond milk latte with the real syrup in it, rather than sugar free. I make a batch of SCD-approved banana bread recipe turned into muffins (with raisins, cinnamon, chopped figs, sometimes I substitute pumpkin or applesauce for the bananas…these are very good and very filling) every Sunday, then eat those throughout the week along with a smoothie for breakfast and for mid day snacks. I also snack on almonds or other nuts mixed with a handful of raisins or figs to satisfy my sweet tooth. I lost some weight, but gained it back with an increase in the SCD yogurt and bananas in the smoothie and eat a few more muffins during the day.

    I suggest you ditch the grain altogether and the potatoes (those were the WORST for me–chronic diarrhea until they were totally out of my system) and try to stick to the SCD diet for a few months just to see how you do. I’ll bet you do much better. I stopped my meds for 5 days to see how things went and I did fine until I also tested the diet, ate some illegal things and the symptoms flared. Back on the meds and the diet and the flare stopped.

    Best of luck to you. Hope you feel better soon.

    • Mk December 15, 2015 at 2:55 am #

      Thank you Nora, some really useful information,

      I have never heard of a flare lasting 4 years, it must have been hell for you, I don’t know how you coped!!!

      I shall certainly experiment with the SCD diet.

      • Nora Marks December 15, 2015 at 7:34 am #

        It was not fun. The meds barely slowed the symptoms, Canasa helped the most, but lots of symptoms with it alone and without the dietary changes.

  9. Julia December 14, 2015 at 7:06 am #

    My teen has UC/Crohn’s – remicade hasn’t worked, Humira is not working, prednisone doesn’t work, neither did Sulfaziazine.
    He is on VSL#3 probiotic and I have also purchased a 200 billion one to try.
    His doctor doesn’t discuss change of diet even though I bring it up every appointment, we tried GF for a few months but that didn’t help.
    I have been researching Banting – LCHF – Real meal Revolution that Professor Tim Noakes
    from South Africa came up with and my son finally agreed to switch so starting January we are putting him on that 100% – he is probably 80% on it now.

  10. Mk December 15, 2015 at 2:57 am #

    Hi Julia,

    Sorry to hear about your teen. I do hope it works, please do keep me updated on his progress and I am happy to share anything that works for me.

    Best of luck :)

  11. Jan Perry December 15, 2015 at 12:20 pm #

    Regarding turmeric I have heard it is much more effective in oil like a salad dressing. It is also much more expensive in capsules than in a big bottle (GNC). Can sprinkle on salads this way and in the salad dressing.

    • Mk December 19, 2015 at 8:37 am #

      Thanks Jan,

      What would be the appropriate amount to take? Typically I take a half a teaspoon in rice and curry.

  12. Laura December 19, 2015 at 7:12 am #

    Hi Deen,
    I also have left sided UC with it being worst in the rectum. I was diagnosed 5 years ago, when I was 28 and have tried every conceivable diet and supplement there is. I pretty much made myself crazy looking for a solution, which I believe only added to my stress and made my colitis worse. No diet, or supplement worked for me. What your UC will respond to will be very individual as no one drug works for every person, just like no one diet or supplement will work for everyone.
    I just try and be as healthy as I can now, eating whole foods and exercising..I am at a loss as to what more I can do.
    I remember when I was first diagnosed and thinking what is it that I am eating that is causing this? (I was eating whole foods and exercising at the time of my diagnosis).
    Doctors tell you it has nothing to do with what you are eating because there is no scientific evidence to say eating this particular food causes colitis. If they said it did they would have nothing to back that up with, other than some anecdotal evidence by a few.
    When you are in a flare, you want to avoid anything high fibre for obvious reasons.
    I feel for you Deen, the first few years after being diagnosed are scary and very confusing. I just don’t want you going crazy and stressing yourself out thinking you are doing something to cause this or make it worse. The stress from that will make your colitis worse. If you read the stories on here eating this way helped this person, taking this supplement helped this person..but it also could be coincidental for some of those people too and their colitis could just be getting better. Sounds crazy but my colitis was better for a while with no changes to anything I was doing or any medications I was taking. I really wish you the best, and a good support system and trying your best to stay positive are probably the best things for you at this point. I always try and remember when I am in a bad flare that it won’t be like this forever and things will always get better at some point.
    Best of luck to you Deen, there is lots of support here!

  13. Mk December 19, 2015 at 8:36 am #

    Hi Laura,

    Thank you so much for sharing your experience and your support. Its heart warming to hear from people going through a similar thing as me.

    I notice that stress seems to be a common occurrence in everyones UC story, what do you do to keep stress down? Are there any coping mechanism or tips you could share?

  14. Laura December 19, 2015 at 9:19 am #

    It definitely helps to talk with people experiencing the same thing. Having UC can be very isolating at times. I actually changed jobs to try to decrease my stress levels (I was an ER nurse). I find exercising, even if it’s just getting outside for a walk if you aren’t feeling that great, helps a lot. I also have two dogs and just having them around alleviates stress. Also, be kind to yourself, nap if you need one, go to bed when you are tired and don’t load your schedule up with a lot of commitments. Saying all of that, I do pretty well keeping a lot of stress out of my life now, but I am still in a flare, so…

  15. Mk December 19, 2015 at 12:21 pm #

    Thanks Laura,

    That’s helpful, how comes your in flare if you don’t mind me asking?

  16. Laura December 20, 2015 at 5:26 am #

    I’m not sure if you are asking why i’m in a flare or meant to type how long. I’ve been in a flare for about a year, still looking for the right thing to get me in remission. In the past prednisone was the only thing to put me in remission. I like to steer clear of using steroids again though unless I’m so bad I can’t leave the house! I’m trying biologics now to see what works. In my experience my flare ups were worse the first few years after I was diagnosed. I make maybe 6-10 trips to the bathroom a day now, but I am still able to go to work, eat and carry on with my day. I used to just do a course of prednisone when I was in a flare and would go into remission for a little less than a year before things would start up again.

  17. Mk December 24, 2015 at 7:07 am #

    Hi Laura,

    Sorry to hear that, it must be tough lIving with a flare for that long. From interacting with various people it seems that only predisone seems like an effective method to stop a flare.

    How has biologics been for you? Many have written about the horrible side effects, my GI said that if I have another flare up she won’t try any new drugs but will move me straight onto biologics.

    I wish you a speed recovery :)

  18. Laura December 28, 2015 at 6:58 am #

    Prednisone is powerful stuff and has proven to be very effective for me when I needed it. The side effects from the steroids were crazy for me though, and the long term effects of using steroids frequently are not great. Biologics work for a lot of people and are a better option for those that keep flaring and need to keep going on prednisone. I have been taking Simponi with some improvement over the last 6 months with no side effects. I actually work in an infusion room now and give patients biologics like remicade and rituxan (mostly for those with rheumatoid arthritis) and some of those patients have been coming in for years without any side effects from the biologics. Everyone is so individual in what will work for them and there are so many variables that there is not a one size fits all treatment for auto-immune diseases. Thanks for your support, I wish you a speedy recovery as well and hope you find something that works for you!

  19. Laura January 17, 2016 at 3:56 pm #

    Hello, I just wanted to leave aessay for Shannon. I am allergic to sulfasalazines andesalazines. Felt rotten on Pentasa and had a bad reaction to Mesalazine enemas which caused severe flare like symptoms.
    I went onto Azathioprine after a hospital stay on steroids. I would urge people not to be so scared on the drugs. Many, many people take them for a long time with no complications.
    It’s always worth giving something a try.
    To Deena, I am 16 months into diagnosis and it totally sucks but each experience to me feels like one step closer to finding out my triggers are. I never had a problem with milk but I get so much mucous if I drink it by the glass. So now I just have a bit of milk in tea. Cheeses etc are okay.
    I recently tried going back to brown bread after 16 months of white or half and half. It’s made me so poorly. At least, I can’t attribute this flare to anything else.
    I found it very hard to stay positive but have found that talking helps. Be honest with friends and family, reevaluate everything in your life, cut out anything that causes stress and when you have good days just get out there and enjoy life. X

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