Help for Colitis and SIBO

Introduction:

My name is Julie. I am 56 yrs old.
On disability because of several health problems. I use to be a very happy and functional person and I need help finding that person again

Current Symptoms:

I have Microscopic Colitis(collengenous) diagnosed 2 yrs ago. I am severely underweight—-5’4″ and only weigh 88lbs.
Stomach, chest and low back pain. Chronic diarrhea or loose stools. Trouble sleeping. Severely depresses and anxious.

This all started about 10 years ago.

Labeled with severe IBS diarrhea. Then told gluten and fructose intolerant. Possible dairy intolerance. Erosive gastritis. Have had positive tests in past for small bowel bacterial overgrowth. Do not tolerate antibiotics very well —-even had clostridium difficille at one point–very sick from that. As everyone else–know where every bathroom is where ever I go. Have not been out to eat for at least 8 yrs. Have no social life, lost my job of 25 yrs, my home and savings because of all this. The medical community has no clue when it comes to digestive issues on what to do and many of them just do not care! There is just too much to go through what has happened the last 10 years—-a nightmare!!!

I have gotten the bathroom trips down to about 2 to 4 a day but do not feel well at all.
Also have co-infections of lyme disease—-mycoplasma bacteria, babesia and HHV6. Do not tolerate treatments at all. Probiotics tend to make things worse—but low doses of Sacharomyces Boulardii seem to help some.

Very confused on all the diets out there for colitis/SIBO. Can the SCD diet work if you have trouble with eggs, dairy and almonds??? What in the world do you eat in order to gain some weight?? My main fear is losing more weight and my heart give out. I do not have a very supportive family and have lost contact with most all my friends—. I live with a friend I have been with for 12 yrs but this has affected him also. I cannot stand feeling and being so useless and hopeless. I do not know how much is the colitis/sibo and how much is the co-infections of lyme. I have been all over the place and no one seems to be able to treat the whole issue. I keep getting told I cannot lose any more weight but Ensure or any of the other drinks the doctors suggest are NOT and option–they are all just sugar etc. I am sooooo hungry and have always loved food, but now it seems to be my enemy.

Any advice would be greatly appreciated.

Where I’d like to be in 1 year:

I would love to be about 30lbs heavier, enjoy my grandchildren, get a job, not be afraid of everything I put in my mouth will make me sick, be happy and productive again. HAVE A LIFE!!!

Current Medications:

Cannot take steroids because of severly low immune system—they just about killed me!
Aloe, immodium and Sacharomyces Boulardii help a little. I have become so tired and underweight that I do not tolerate too many things.

written by Julie

submitted in the colitis venting area




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SIBO

22 Responses to Help for Colitis and SIBO

  1. alex November 11, 2012 at 8:51 am #

    Hi Julie,
    Im glad that you wrote on this site.
    The only thing worse than being really sick is being sick and alone.
    I am no expert on all of your illnesses, but I do know what its like to be very sick, weak, depressed, and feeling lost.
    I have been slowly feeling better over the last year, and am trying my hardest to treat myself well…….the way I deserve.
    This site is very helpful. You can get good suggestions and feedback, as well as reach people who really understand.
    Someday when you are feeling better you will be able to help someone who is struggling the way you are now.
    Keep reaching out!
    Alex

  2. joanna November 11, 2012 at 10:29 am #

    hey julie! i think SCD, GAPS, or Paleo would be awesome for you to try. i am following the paleo autoimmune protocol for people with autoimmune conditions. i had to cut out a lot of things, but i’ve gained 5 lbs (went from 84-89 lbs since august- i’m 5’4″ so i know it sucks being so skinny). you could try the diet for a month and see what happens. i don’t think you will get worse if you try to follow any of them because they are anti-inflammatory.

    • Alysia February 28, 2014 at 12:22 am #

      I am also 5’4” and 88 pounds due to this illness! I’m a 25 year old female. I’ve known for a couple years now that I am gluten intolerant, so that has been out of my diet for some time. I’ve also given up dairy. My doctors haven’t been a lot of help – they ruled out the big things like cancer which is great…but western medicine does little for truly recognizing, diagnosing and treating illnesses – more often they just treat the symptoms.
      Only recently have I realized that I could likely be suffering from SIBO. I’m currently on the SCD diet and am taking Peppermint and Oregano oil in the AM and drinking miso broth to re-populate the good bacteria before bed.
      So far, my diarrhea has worsened, but I’ve heard it can get worse before it gets better. I’ve only been on the diet a week.

      I’m curious to know what happened to everyone before you got this illness?
      I was in the hospital years ago, my daughter was born via c-section and I had a post partum infection – I was given antibiotics to treat it and I have never been the same since.
      Weight loss, fainting, low blood pressure and low sugar. Severe adrenal fatigue.

      My life got back on track 2 years ago after giving up gluten. What a world of difference that made. Learning to stress less and laugh more also had a huge impact.

      Did anyone else have something major happen to them before they got sick?

      • bev February 28, 2014 at 3:25 pm #

        Hi Alysia,

        Before I acquired UC, I took a lot of antibiotics as a young child for very bad tonsils. They were never taken out, though. They gave me so many problems that I had antibiotic shots in my rear end quite a few times! I can only imagine how potent those were.

        I was also on Accutane four times in my early 20s for acne. Bad move! If I would have known that Accutane could actually contribute and/or cause UC, I’d never have taken it.

        In summation, it looks like the over use of antibiotics (way back in 60s and the use of Accutane definitely got me on the wrong road to UC. I know that doctors were unaware about the antibiotic use way back when. Too bad for me….and so many others…

        Cheers

  3. Gail November 11, 2012 at 12:33 pm #

    Hi Julie, My very first thought when I saw your picture was that you might likely have full blown celiac disease. When I read that you are gluten intolerant that makes sense but I wonder if you should pursue that further. I understand it takes an average of 10-12 years for people with celiac disease to get a proper diagnosis and, in the meantime, continue to get sicker and sicker. If someone has celiac disease, their body cannot absorb the needed vitamins, minerals and nutrients. I don’t know where you live but check out the celiaccenter.org website. Perhaps you can contact them there or, if you are anywhere near there (Maryland), maybe you can get an appointment. In the meantime, I would certainly stick to the diets that Joanna mentioned and also find out if you need B12, iron, vitamin D, etc. Most likely you need B12 for sure. Good luck. I hope you will start to feel better soon.

  4. julie November 11, 2012 at 12:33 pm #

    Hi Julie,
    sorry to hear your so ill with so many different things, first of all you need to try build your immune system back up, have you thought about approaching a homeapath maybe they can help seeing as how you can,t tolerate conventional meds, maybe you could respond better to natural remedies, i too have had uc 10 years and am currently looking into alternative medicine cos i am so sick of the roundabout of drugs that hit you eewith awful side effects. If you can, visit a homeopath you have nothing to lose, i hope you get well eventually x x

  5. PeterNZ November 11, 2012 at 3:18 pm #

    Hi Julie,

    I guess if you are down to 2-4 bowel movements though the colitis may at this time be a secondary issue. I’d explore the other maladies first and look at the colitis if you begin to bleed heavily.

    Good luck,
    Peter

  6. bev November 12, 2012 at 11:50 am #

    Hi JK…

    I wish I could suggest probiotics to you, but you stated that they seem to make things worse. How so, if you don’t mind my asking? Is it gas and bloating? Because those types of symptoms are normal when introducing a probiotic I think.

    I feel for you so much. I feel like I have lost 13 years of me life to this disease, that I cannot get back. The great news is that I am now in total remission, just through the use of a 50 billion strain probioic. I never expected it to work, but it did, and here I am today…completely med free! I cannot tolerate meds either. I’ve never been able to. I was so sick on them and am overjoyed to have finally gotten off of them. Never again. I’d have surgery first before I would take meds again!

    Cheers, and all the very best. You came to the right place here. Hopefully somebody will be able to give you that nugget that is going to work!!

    Bev:)

    • Julie November 12, 2012 at 9:34 pm #

      Hi Bev—thanks for responding. As far as probiotics, most make the diarrhea worse for me. I started using saccharomyces boulardii(low dose and working up) and that might be helping a little bit for now. I know so many others are worse with their colitis symptoms—I know—I use to be in the bathroom 12 to 18 times a day and kept being told I had severe IBS diarrhea!!! So I went several years before I was diagnosed with colitis and sibo but I think having lyme disease also adds to the confusion—-what to treat first????
      Can you please tell me what diet you are using? I am so hungry but not much to pick from to eat. Each diet has a slightly different take on what to eat. Need to really gain some weight. Please let me know your thoughts——-Julie

      • bev November 12, 2012 at 10:54 pm #

        Julie…believe it or not, I eat whatever I want, now that I’m in remission! I know!! When I flare, I can’t eat anything it seems, especially vegetables like broccoli or almonds. Those two things really gave me intense pain.

        I wish I could tell you what to eat that won’t hurt you, yet make you gain weight. I am perhaps not the best authority in that department since I eat whatever…

        Hopefully someone else can help…does anyone have an answer for Julie…anyone??

        • julie November 13, 2012 at 2:04 am #

          Hi Bev,
          I wondered if you had ever taken the evil pred steroid, I absolutely hate them, i am still tapering off them even though i am resistant to them, i want to stop them but am scared to do so. Do you know anyone that has just stopped? I have gained 20 pounds in 12 weeks on them i have mouth sores, palpitations, night sweats, shakes, and horrible mood swings. I will never ever take them again. Any way i just wondered x x Julie

          • bev November 13, 2012 at 7:22 am #

            I never took pred for UC. The doctor wanted me to, but I said no. The reason I said no was because I took it for five days when I had pneumonia two years ago, and I had a terrible reaction to it…moreso when I stopped it. Awful withdrawal…severe nausea, a rash…the other doctor thought I might be allergic to it. Anyway, I refused to use it for UC, and after reading everyone else’s experiences with it, I’m glad I never took it.

            Like Shelly says…don’t just stop…it requires tapering. Probably part of the reason that I felt so awful from it is because after taking it for five days, you just stop it cold turkey, when you take it for a lung infection.

            Cheers:)

          • shelly in maine November 13, 2012 at 4:53 pm #

            Julie…I just realized there are 2 of you!
            Don’t just stop the pred. It can be dangerous. I am also resistant, but that doesn’t mean you should stop.
            Sorry about the Julie confusion. Best, shelly

        • Julie November 28, 2012 at 1:13 pm #

          Bev–can you please tell me what probiotic you took to get things under control? 50 billion–thats alot!!. Has anyone ever had any luck with fecal transplants?? I heard they were starting to do them for crohns and colitis. I just can’t seem to stand the pain and diarrhea anymore—I have gotten worse and now may have an pneumonia (which goes along with lyme) Everyone I see says I need to kill off the bad bacteria (SIBO) but even the natural and herbal antibiotics send me into a huge flare of pain and diarrhea. I know if I could just gain some weight I would feel a little better. Soooooo hungry but do not know what to eat. I have read that some people actually have a parasite. I just do not seem to tolerate much of anything anymore. Has anyone gotten releif going on TPN (nutrition through a pic line)? Julie

          • bev November 28, 2012 at 1:58 pm #

            Hi again Julie…

            I’ve named my probiotic so many times on here…lol!

            It is called ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. Yes, it is 50 billion strong!

            Cheers:)

  7. shelly in maine November 13, 2012 at 4:44 am #

    Hi Julie,
    Don’t just stop the pred!!

    Sounds like you Need to take a deep breath, get some new doctors, get tested for celiac and other allergens….and a nutritionist to get you on track. It looks to me you need some supplemental nutrition. It is hard to think clearly when you’re body is on auto pilot and on survival mode…lots of brain fog, etc.

    Please, please pursue these things…stick with the s. Bouliardi.

    Be your own advocate…CD/anti inflammatory diet…keep a journal of foods, bm’s etc. Your tests may still come back negative so you will just have “intolerances” to keep track of.

    Best,
    Shelly

    • shelly in maine November 13, 2012 at 4:47 am #

      Damn auto correct…SCD diet and anti inflammatory….for IBD and Lyme…knowledge is power…. :-)

  8. Ruth W November 14, 2012 at 7:19 am #

    Julie,
    Are you near Rochester, MN? Dr Murray and Dr Pardi are the best doctors in the country for GI… specialize in Celiac and collengenous colitis.
    I have been on disability since 2008 as well. I have to know where the bathrooms are everywhere we go. I have celiac, colitis, ibs, dumping syndrome…ect. Look into shakology from beachbody…it’s expensive but really high in nutrients. Try really hard to get your strength back up….walking is great. Even if you have to start by walking around the living room. Get educated on all you diseases and advocate for yourself….doctors do not know all. A couple of good books to start with are “Patient Heal Thyself” (a little extreme but has good info) and “Breaking the Vicious Cycle”. There is still life to be had. You have to force yourself at first but it’ll get better.

    Ruth

  9. Norm December 3, 2012 at 10:27 pm #

    Hi Julie,
    Don’t give up hope. SIBO feeds on unabsorbed carbs. What is a typical day like in terms of meals. What are you able to eat?
    Wishing you the best.

    • Julie December 19, 2012 at 11:57 am #

      Norm—not sure what to eat—-really need calories. Can TPN (iv feeding) make the bacterial overgrowth worse?? I also have severe small bowel bacterial overgrowth. Cannot lose any more weight and the Dr wants to put me on TPN again but even though the sugars, amino acids and fatty acids are through iv (not the digestive tract) I would still think it could feed the bad bacteria–just like antibiotics given by iv can still kill off the good bacteria. What do people eat to get at least 2000 calories in without feeding the bacteria? Thanks

  10. David Epstein January 18, 2013 at 12:02 am #

    Contact Doctor Gerard Mullian via jmckenn1@jhmi.edu in the U.S.A. Read his book “The Inside Tract” found on amazon, He is very hard to get past his secratary. He is a pioneer in this and has been helping me. His story is more then remarkable. He runs the department at Johns Hopkins Hospital.
    He tells me NO PROBIOTICS There is not suppose to be any bacteria in your small intestine and you should not introduce them. I am following the diet and slowly slowly slowly my pain is deminishing. I wish you the best.

    • Julie February 11, 2013 at 4:38 pm #

      Thank you David—I will check it out—-Julie

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