Newbie

Hello my name is Diane…I’m a retired grandmother.
I like reading and computer games…love traveling , although Ulcerative Colitis has made this a little harder to do.

I live in Sydney.. like going to the gym…and going places with my family.

Symptoms:

I have just been diagnosed with UC….it is mostly on the left side and mild at the moment
I have reasonably mild pain..loose stools with blood most times…loss of appetite on most days…
Weight loss

I was in great health for Seventy-One years…bowel motions like clockwork every morning….and then it all fell apart..lol….

The symptoms came on suddenly…it was so frightening….went through a barrage of tests …finally a colonoscopy revealed all.

Let me say that I am eternally grateful that I didn’t have cancer as I was so worried about this.

I am so thankful to have found this group …it is such a lonely feeling to have an incurable disease with such horrible symptoms…and wonderful to hear other stories…to know there are other people desperately seeking the nearest loo.

Its a laugh I know, but when I am in a shopping centre and I find a new location with a restroom it’s better than finding a great dress shop….sad but true.

I start my medication next week…..short term prednisone and then another med long term…he hasn’t told me which one yet….my doctor that is

I’m hopelessly confused about diet…would appreciate any advice…I’m told low fibre, but that doesn’t sound healthy…I just don’t know what to eat…I have totally gone of coffee and alcohol and fatty foods…I guess my body is trying to tell me something.

I have a history of bowel troubles in my family..my grandmother had UC…my son and daughter have Crohn’s disease.
I am a little scared of the prednisone. .on lowest dose of 25 milligrams…but still….

Just grateful to have found this site…honestly I feel a 100 % better just telling my story…I don’t feel so alone…will appreciate diet advice especially…are most Ulcerative Colitis patients lactose intolerant…and should I be leaving gluten alone….don’t want to have too many dietary restrictions if they are not necessary…thanks for listening….hurry….finished my 300 words…good thing to do.

written by Diane

submitted in the colitis venting area





21 Responses to Newbie

  1. Sandra Brammall November 25, 2019 at 4:16 am #

    Hi there, nice to meet you ! I have had UC for around ten years. I am not lactose intolerant but for sure, I avoid all dairy and that seems to help me a lot, in particular cream and ice cream send my symptoms in to overdrive. So instead, I have soya milk, almond milk etc instead. I have just discovered a powder which is really helping, it is called diatomaceous earth, (food grade), it is a food supplement, not a medication. Google it for more info…since taking this, my bowel movements have reduced from approx 8 a day down to one or two. I used to like running in the woods in the mornings, but with UC that became impossible as mornings were my worst time for needing the toilet urgently, now I run on the treadmill at the gym, as the toilet is not too far away. xx good luck x Sandra

    • Bob November 26, 2019 at 9:20 pm #

      My understanding about diatomaceous earth is that it will cure you of parasites. But otherwise I haven’t heard of any medical reasons for ingesting it. Think of it like tiny glass shards. It rips apart the insides of the parasites when they eat it. But I wonder what it might do to your gut lining? I’ve heard quite a few stories of people being mis-diagnosed with UC or IBD who actually had undiagnosed parasites. Once they used the diatomaceous earth they were “cured”. Glad it helped you Sandra.

      -Bob

      • Sandra Brammall November 27, 2019 at 12:42 am #

        Hi Bob thanks for that info on DE. I wonder if you may be right, have I been misdiagnosed, I hope so !! it got to the stage where I was willing to try anything for some relief of my symptoms. I will keep taking it as it seems to be helping me for the moment, thanks again. Sandra

  2. Yeooooow November 25, 2019 at 4:18 am #

    Hi Diane,

    Must be scary!

    Gluten and dairy don’t give me any problems, neither does alcohol. I think it’s different for everyone to be honest. One mistake everyone makes at the start is reading about some miracle cure online and then sticking to it even if it is not working for them.

    I tried everything, diet and supplement wise. Absolutely everything.

    Two things that worked for me in the end, nicotine patches (not a smoker) and faecal transplant.

    Nicotine patches would always get me out of a flare but they are horrible.

    I did FMT a few years ago and I haven’t had a major flare up yet.

    Also I avoid salads and nuts. Not completely, but mostly. Cooked veggies are fine for me.

    Best of luck,

  3. Fitsum
    fitsum November 25, 2019 at 5:20 am #

    so you are familiar with IBD through your families. i think you are well aware that UC is very manageable disease. the main thing is that there are no other complications like cancer and other auto immune cases. your follow up should focus on avoiding them as is managing the UC. i urge you to use other medicines other than predinsolone, of course unless otherwise it is a must. but based on my 10+ years experience with UC, life still change like healthy eating habit (including fiber food – it is very helpful in managing the motility of the disease), stress minimizing, enough rest, exercise are the most successful ways to manage UC.
    you are not alone, we all are like you and with you

    • Diane M
      Diane m November 25, 2019 at 5:08 pm #

      Hi…yes I am thankful I made it to 71 with good health…I don’t know if I would have been able to cope with this at a young age…you are brave

  4. Deidre November 25, 2019 at 6:12 am #

    Oh my! I know how confusing it is to suddenly be diagnosed with UC. Mine came on suddenly and I was very ill, too, with my first flare. I take Mesalamine, which isn’t perfect but has probably fewer symptoms than most medicines (they sort of try one thing, then another, and some of these medicines themselves are very intimidating).

    Diet IS very confusing, and doctors don’t always pay attention to it. My GI doctor told me when I was diagnosed that “diet wouldn’t change anything” but suggested bland foods (white bread, etc.) But some people (including me) believe that many of those bland foods can actually make things worse, by providing food for bad bacteria in your gut. I personally became convinced that In addition to taking Mesalamine, though, I would follow the Specific Carbohydrate Diet (SCD). It is used at Seattle Children’s Hospital as a frontline treatment for kids who present with UC. If the children respond, they avoid the stronger meds that could be so problematic for them. Sometimes they can avoid all meds. If you are interested in SCD, you should read Elaine Gottschall’s book called Breaking the Vicious Cycle. I found it to be very helpful, and it has helped me a lot. I am absolutely strict about following it. FODMAP and Paleo are sort of offshoots of SCD, but in my experience didn’t cover enough food items to be helpful to me.

    People on this website can help you if you decide to follow one of these diets. Someone here has probably tried about everything out there, and we all just want to navigate this the best we can.

    Best of luck to you.

    Deidre in SC

  5. Rosanne
    Rosanne Robinson November 25, 2019 at 3:36 pm #

    Wow…71 and diagnosed now! I am 64 and have had this since I was 27. Raised 3 kids…was pregnant with 2nd when I had symptoms. Had a 3rd pregnancy after diagnosis.

    I have been on prednisone since 1982. Mostly low dose maintenance. My bone scans are great. I also take mercaptopurine, azulfadine daily.

    At the start my doc said if something bothers you don’t eat it. So basically I eat everything. Not a big drinker anyway so no big deal.

    Listen to your body. Get lots of rest. Did I say lots of rest? Your body heals then.

    Good luck…I hope you have mild symptoms.

    • Diane M
      Diane m November 25, 2019 at 5:03 pm #

      Hi…yes I am thankful I made it to 71 with good health…I don’t know if I would have been able to cope with this at a young age…you are brave

      • Rosanne
        Rosanne Robinson November 25, 2019 at 5:04 pm #
  6. Jeanette November 25, 2019 at 4:51 pm #

    I have had UC for 30 years. My whole colon is involved. Im allergic to sulfa. I take a 5 ASA mesalamine. I have tried immunosuppressants. I’ll never take them again. For rough times, I will take prednisone. The biggest help is that I eat plant based and a whole food diet.

    • Diane M
      Diane m November 25, 2019 at 5:05 pm #

      Yes I like the idea of whole foods….I have always eaten healthy foods and want to continue

  7. Diane M
    Diane m November 25, 2019 at 5:14 pm #

    So nice to meet you all…I have taken all your advice on board…it’s all good advice
    Thank you so much for taking the time to write
    I wish everyone good luck on their journey
    We will make it thru

  8. Peter Harris November 26, 2019 at 5:28 am #

    Check out the specific carbohydrate diet (scdiet). Also, low dose naltrexone (LDN). All the best! UC 36 years.

  9. Bob November 26, 2019 at 9:06 pm #

    Hi Diane,

    The best advice I received in the early days following my UC diagnosis was to read “Breaking the Vicious Cycle” by Elaine Gottachall and then to follow the “Specific Carbohydrate Diet”. This diet has helped thousands of UC sufferers. I suggest you read the book (you can find it at most libraries) and learn about the science behind the diet. It makes sense once you learn about what is happening at the molecular level in your gut. In a nutshell, food that sits undigested in your gut will feed bad gut bugs. The bad gut bugs proliferate. Their by-product is methane. Methane wreaks havoc on your gut lining. You get leaky gut and some of us get ulcers. SCD gives you a roadmap of foods that will completely digest, which in turn starves out the bad gut bugs. This is a gross over simplification, but gives you the gist.

    SCD tells you exactly what you can and cannot eat. And it works! Many people go off their meds entirely. I continue to take prescription meds while also eating SCD, but have been able to keep at the low level of 5-ASA drugs for the 11 years since being diagnosed.

    It feels good to be handed a roadmap for a diet that will help your UC symptoms. For me, the stress of not knowing what to eat was not healthy. There is a lot of conflicting information out there for people with UC.

    I’m happy to answer any questions you might have. Good luck.

    -Bob
    UC 11 years
    SCD 10 years
    LDN 1.5 years

  10. Diane M
    Diane m November 27, 2019 at 3:33 am #

    Thank you so much Bob
    I will go to the library tomorrow and find this book
    What you say makes a lot of sense
    Thank you

  11. Sarah Reilly November 27, 2019 at 12:38 pm #

    Hi everyone, I am new here..just diagnosed 6 months ago. I’m so happy to have found this site.I feel alone about it, as no-one really understands unless they are going through it. I was on prednisolone for 2 months, I thought this was it! I got a cure!! Needless to say my symptoms came back gradually after completing course. I was also on Pentasa since diagnosis but took myself off them over 3 weeks ago. I don’t feel as bad, I really felt Pentasa exacerbated everything. My diet is very bland now, but I’m willing to have that over the horrific symptoms! I would love to know anyone’s experience with Pentasa. I am currently on no meds for UC. Can you go this route of no meds? Being a nurse it has impacted my work, I do let my colleagues know what I go through, it’s great to talk. Any feedback would be greatly appreciated.
    I don’t feel as alone now. I live in West Ireland and I have no direct contact with people in similar situation.
    Thank you
    Kind Regards

    Sarah.

    • Bob November 27, 2019 at 1:02 pm #

      Hi Sarah,

      Sorry you have to be here. Here’s what I know about Pentasa plus some suggestions regarding meds.

      Pentasa was one of the first meds used for UC. It is basically a type of aspirin. It has been outdated for some time since there are so many superior drugs that have been developed. Many doctors still use it as a first course of action. Also, it’s cheap. I suppose it must work for some people or they wouldn’t continue to prescribe it. But the majority of people I know had zero luck with Pentasa (myself included).

      There are a whole family of 5-ASA drugs that work very well for people with UC. I switched from Pentasa to Salofalk and had good success with it for about 5 years. Then it inexplicably stopped working. So I switched to another 5-ASA drug called Mezavant with good success. This is the same as Lialda in the U.S.. Salofalk and Mezavant are both enteric coated which means they don’t disperse the meds until the pills get into your gut (where you need it).

      If the 5-ASA drugs don’t work then most doctors will prescribe biologics (e.g. Entivio, Remicaid etc.). Those come with side effects, but are necessary for some people.

      Steroids are the big guns – usually reserved for extreme flares. I’ve taken steroid enemas a few times. The first couple of times they worked well, but not the third time. I think my body built up a resistance to them?

      LDN is an off-shoot from the traditional prescription drug ladder. I’ve had great success with it for the past 1.5 years. I take it along with Mezavant plus of course eating SCD. This trio is working well for me.

      I’m an advocate of eating SCD for UC. This is the number one thing you can do to help your condition. If SCD alone doesn’t work (it doesn’t for me) then I suggest eating SCD PLUS taking prescription meds. Don’t allow your body to normalize to a flared state if you can help it. I think you should do whatever it takes to stop flare symptoms as soon as you can. That often requires prescription meds.

      I’ve tried to wean myself off of meds a half dozen different times because I prefer to be au natural. Every time it’s been the same result (i.e. a flare). Now I’ve resigned to the fact that UC is an incurable disease and I’ll need to take meds for the rest of my life. Fortunately, we live in a day and age where this is possible. 5-ASA drugs are basically coated aspirin. There are no side effects. In my opinion there is no reason NOT to take them.

      Good luck.

      Bob
      UC 11 years
      SCD 10 years
      LDN 1.5 years

  12. Diane M
    Diane m December 8, 2019 at 1:12 am #

    My specialist wanted me to go on a short term low dose steroid…
    However my GP who does the prescribing sort of disregarded this…he didn’t want to give me steroids..he put me straight on to Pentasa..
    I’m having success with them so far…the diarrhea has settled a lot…and the bleeding has decreased a lot….just hope I don’t get the thinning hair….could be a deal breaker
    Perhaps should have taken the steroids….that could have knocked the flare completely but for the moment Pentasa is working

    • Sandra December 8, 2019 at 3:21 am #

      hiya Diane…I avoided steroids for years, until I got the stage where my consultant said I was literally weeks away from major surgery. I was on them for three months and for sure, they stopped the flare from progressing any further. After slowly coming off them, my symptoms are taken care of by pentasa, they suit me well, no issues with them at all.

    • Deidre December 8, 2019 at 7:02 am #

      If you were able to become flare free without steroids, don’t feel bad about it. I was in a similar situation (better but not 100%), and went on a strict SCD diet in addition to Mesalamine/Lialda. It helped me avoid steroids and brought me into complete remission.

      Best of luck to you.

      Deidre

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