Ulcerative Colitis Tips


Ulcerative Colitis Tips PLUS iHaveUC Newsletter




Diagnosed October of 2015 – New to Colitis

MTasca Keet Tasca:

Well hello there . I can see that I’m not alone in this which is fabulous! I never heard of this till I was diagnosed just a few weeks ago. I have mild UC and having to take Lialda and Canasa. Had to stop the Canasa because it was turning my urine brown. So now I’m just on Lialda.

I hate medication and I don’t understand but before this happened I was eating paleo diet which supposedly helps. I have been eating paleo for over a year and I get UC? I’m just so confused and the medicine isn’t helping. If anyone can give me the best advice that would be great thank you.

Symptoms:

My symptoms are weird. I end up with blood and what looks like puss or just all white stuff that comes out of me. Always blood and cramping. Not a lot of diarrhea or anything like that. I’m only inflamed in my sigmoid colon all the way down to my rectum.

Tasca’s Story:

How long do these episodes last?

Are any of you really tired to the point you are not motivated to do anything?

I’m having a really hard time with my significant other really understanding what I’m going through because I do not look sick on the outside he acts like I’m perfectly fine. Any suggestions on getting him to see what I’m going through?

I take Lialda 4.8 grams a day and it worked for a couple of weeks and it’s back full blown again. What is the best medicine besides a good diet which I already had eating a paleo lifestyle are out there?

I’m really sensitive to medication I prefer a natural remedy but obvious my diet isn’t working.

I read all the time about how Doctors put you on dangerous drug cocktails and so forth and I do not want that.

Should I start taking a probiotic even though I eat a lot of sourkraut and I drink a lot of kombuchi and fermented foods.

I have read that people who eat a paleo lifestyle and take a good probiotic has helped but I know everyone is different and everything works different for everybody.

I’m most concerned about me not being able to be the best mom to my children because this disease is knocking me down. They have so much energy and I can’t keep up at all.

Thank you for any tips, advice or anything anyone has to help me out I would be much obliged . I need all the help I can get since I really have no support in my home life . I am still writing because I have to have a 300 word minimum lol so I’m there . Finally lol

Medications:

I was just diagnosed in October and they just push meds on me so I have not had a chance to really try anything because I already eat really well

written by Tasca K

submitted in the colitis venting area







6 Responses to Diagnosed October of 2015 – New to Colitis

  1. Blythe December 9, 2015 at 11:46 pm #

    I’ve been diagnosed with UC 2006. It’s a lot to take in but fear not, you are not alone! From my personal experience, I’d have your doctor check you for IBS as well. My first GI doctor completely missed it and blamed me for not getting better. Which brings me to point two- question everything. You need a GI doctor that will listen to you and help, not just throw pills at you. It does take awhile to find the right combo of meds though so don’t get discouraged. If Lialda isn’t working for you, try Asacol or Apriso. Generally speaking if Asacol works, Lialda won’t and vice versa. Also, prednisone is your friend. It can help calm the initial flare enough for the other meds to take effect. It does have side effects so be sure you and your doctor have an agreed upon plan of treatment (for weening) before you start it. A food diary is good too but don’t let it rule your life. Your dietary “safe foods” will change over time and that’s okay. And one last thing, be careful with the whole probiotic thing. I used to take Lactobacillus acidophilus because a doctor told me to and then switched to Align. Worst mistakes ever. I had no idea the cramping, bloating, and mucus had returned because of the probiotics. I know not everyone is the same though. Hope some of that helps!

  2. Fiona Evans December 10, 2015 at 12:00 am #

    Hi. Sorry to hear about your diagnosis. Want to start by saying I don’t have UC. Am here to learn for my daughter who is 6. She was diagnosed at 5. I just wanted to respond as we seem to be going down the paleo route and that is the direction our nutritional therapist recommends. Have you heard of AIP? It might be you need to try this. Paleomom is a good ‘science’ resource for this (AIP) in general. Sweet Potatos and social Change (I think it is called) is an AIP blog by someone with UC. I have found Terry Wahls helpful reading. Empowered Sustenance is another good UC blogger (she started on SCD, then went to GAPS) but says she is now more paleo.
    My daughter has been in remission for 18 months (1-2 normal, blood free bowel movements per day, no urgency). She is a normal 6 year old, doing dance and martial art lessons (her choice), doing well at school, playing with friends, enjoying climbing rocks and walks in woods. She is on mezalazine. Her scopes and bloods were pretty bad at diagnosis. The Dr’s are surprised every time we go by now well she is! I in the UK and the Dr’s we come across have been pretty scathing about diet ‘what are you going to do, stop her having food at parties’ was the response of one. Despite the meds when she has ‘sneeked’ party food there has been awful stomach pain and on two occasions blood so my daughter is now on board with food. I am hoping as she gets older she will be able to come off the mezalazine but obviously at present I am making choices for her. She needs to want to continue the route we have started.
    Hope you don’t mind me responding. I am here mostly to learn and am aware the website says it’s for UC-ers. For me i had heard of UC but I hadn’t heard of paleo. I am trying to learn for my daughter and have found those resources (plus others) a good start.
    Good luck.

  3. Ravi S Pandey December 10, 2015 at 4:06 pm #

    From my personal experience, probiotics,dietary modifications etc help only some people only during some of their episodes of UC .The only dietary change that helps is taking low fibre diet, adequate water and adequate calories with protein and multivitamins during acute episodes . However dietary modifications do not harm and along with food diary provide a useful distraction and feeling of having some control over distressing symptoms.
    However what harms is leaving your medicines.Continue your drugs and take whatever diet suits you

  4. Camille M
    Camille December 10, 2015 at 10:22 pm #

    Tasca,

    I am sorry to hear of your diagnosis, but I was diagnosed 16 years ago, so I have been through a lot of meds and information. Like you, I prefer to do things naturally and preventatively rather than take meds, but this is the kind of illness but does not fall into that category where you can manage it naturally. I think the Paleo diet, managing stress and keeping on top of things healthwise helps.

    I take the probiotic VSL3. I also take low dose naltrexone, which acts as a reset button, working with your lymphatic system in the middle of the night, with little to no side effects. I am in my fourth flair and this time I have not been able to take a lot of the medication due to side effects. Although they’re pretty icky, I take rowasa and cortico-steroid enemas every night. They put the medication where it is needed and they aren’t as systemic some medications. They are working and I am almost in remission.

    Have a wonderful G.I. however his toolbox is limited to pharmaceuticals. I think it’s really important to find a good integrative medicine doctor that has an open mind when it comes to alternative therapies in addition to your GI. Mine is putting me on helmithic therapy. It is very natural – hardly any side effects, if any, and a little more back to our origins in nature. It’s basically introducing in microscopic worm into your system that we used to have before we went super hygienic in Western culture. In order to not be rejected by our bodies, this worm produces a protein that inhibits inflammation and they are finding tremendous success with autoimmune disease is and this type of therapy. I had to order my “worms” from England. Did you ever wonder why people in Third World countries hardly ever get autoimmune diseases?

    I take a low dose of immune suppressants, encapsulated sulfa tablets, low dose naltrexone, curamin, which is an anti-inflammatory (I get it at needs.com), and Boswellia. It sounds like a lot, but remember I am in a flare currently.

    The most important thing to note is the longer the flare goes on or the symptoms go on, the higher up your colon the disease will travel. This was not something I knew and I let a flare go on so long, (while trying to treat it with diet and supplements) when I finally sought md help, my colon was 95% diseased and I almost lost it. The reason I had no clue about it is because the first doctor that diagnosed me was an ass and I refused to go back to him.

    Find a good G.I. that will listen to you and work with you and educate you, and don’t be afraid to try different meds, because different things work for different people and sometimes you just have to keep trying until you find something that helps solve the problem.

    Lots of luck to you and keep using this website if you ever need help!

    Camille

  5. Camille M
    Camille December 10, 2015 at 10:30 pm #

    I forgot to tell you… Episodes for me last generally about six months with treatment. Yes I am absolutely exhausted a lot of the time. Please listen to your body and the rest will help you heal and I know it is hard but your husband has to step up! If you doesn’t you’re going to have to find somebody to help you hire them if you can’t for that go to your folks or whatever it takes, because rest is critical in healing.

    My husband sees me running to the bathroom frequently and he knows well when I am ill, but my boys, 26 and 18, really don’t see how sick I am because, like you, they can’t see it. I get very angry at them when they ask me what’s for dinner and I am sick and far too tired to cook for them. (The 26-year-old just finished a second college degree, so he has been home recently). Whatever you do, don’t hold back in telling your family how sick you are, and how important their help is in your healing, because eventually they’ll get it.

    I spent a few weeks at my parents’, where my mom cooked for me and I just rested and I did a lot of healing then.

  6. Cheryl December 12, 2015 at 2:13 am #

    I have been dealing with UC for 32 years. As you already commented, no one treatment or even combination of treatments works for everyone. Steroids have worked for me most of the time. I have not been on any of the newer immunosuppressing drugs but may be soon if the frequency of my flares contiunes. I am married, raised 3 children and even managed to work at least part time as an RN most of those years. I am certainly not going to say it has been easy. My husband tries to be supportive but he has always had a job which has required him to travel- a lot. I never really shared my condition with many, not even my kids. Most of my friends and coworkers would be surprised to find out. Public awareness and perception of UC have improved in recent years thanks to people like Adam. When I was diagnosed even some doctors thought UC occurred in people because of personality type or stress. I do believe that our “cleanliness” and overuse of antibiotics have contributed to UC development. I have been taking a probiotic for several months. My advice to you is the same as the previous writers. Also get plenty of fresh air and exercise when you can. i feel better in general when I make plans and have something to look forward to doing. To ease my mind, I have occasionally worn -yes, I hate to even type it- an adult diaper. I still have a pretty kickin figure and the newer styles really don’t look bad under most clothes. Good luck in your journey and know that you are not alone.

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