Where To Go From Here? This Feels Like A Roundabout…

danielle the teacher

Danielle by the water

Introduction:

Hello! My name is Danielle, and I am currently a 24 year old teacher from Connecticut. Unfortunately, UC has been controlling my life since June of 2005. 3 Colonoscopys, only two of them say YES to UC. I am convinced that stress, diet, and exercise (or lack there of- for all three) are the reasons that I am continually sick.

Colitis Symptoms:

My symptoms have always been: bloody stool, stomach discomfort, mucus in stool, gas, bloating, the constant “urge” to go to the bathroom, and diarrhea. Then there is… weight gain, weight loss, moodiness… depends on the flare… right?

I was first diagnosed at 17 years old with Ulcerative Colitis via Danbury Hospital in Connecticut.

I was put on the now “usual” asacol protocol, which I had temporary success with. I carried on dealing with the pain, and being a typical college student; cafeteria food and tons of alcohol consumption. Strangely, (or maybe luckily) I experienced no problems for almost a year being medicine free, or in remission most of the time. Then, the flare arrived.

At 19 years old I went to a doctor in Princeton, NJ that had cured a friend of mine. I had a colonscopy at Princeton Medical Center for Gastro., and she found NO Ulcerative Colitis. (They actually found ZERO scar tissue/biopsies that pointed to UC.) She diagnosed me with IBS and tested my allergies to find that I was allergic to sorbitol. She also gave me enemas, which were actually wonderful. She explained to me that if the rectal bleeding is BRIGHT red, then it is local, which means I am bleeding towards the END of my intestinces/rectum. I still use enemas to this day, and it stops the bleeding…. (IF i do them every day). Anyway, I kept a diet, and eventually flared again… so I went back to my previous doctor in Danbury, CT who put me on Lialda.

At 21 years old, I had constant flares; good one week, dying the next. I then decided to see an herbalist who tested me positive for Candida (yeast overgrowth). This was strange to me because i’ve never had any issues with yeast, even as a female. After several months of harsh dieting, supplements, vitamins… I woke up one day without any brain fog, and without my alarm. It was as if I passed a threshold and I overcame the poisons in my stomach. I was good and healthy for 4 months, pooping like I’ve never pooped before. (If I could turn back time….) Then…. slowly, I started reintroducing pizza, italian sandwiches…. then alcohol, and before I knew it I was digging myself into another hole.

I couldn’t get out of this another flare, couldn’t stand the idea of going on a diet “again” and was diagnosed at 23 years old with Ulcerative Colitis by Yale Gastro Hospital via Colonoscopy. They seemed to think the Princeton Doctor was wrong, and that I 100% have Ulcerative Colitis. I was put on 4 tablets of Lialda a day, enema’s, and sent out the door.

Now, I am in my current flare and have been here since Thanksgiving 2011. (Thanks bronchitis and antibiotics) Therefore, I have been on the SCD diet (for about 3 weeks) after reading most of your input and posts about it. The SCD Diet and the Candida Diet conflict in many ways… Candida is basically sugar-free (no fruits, no juice.. NO sugar!) I am still bleeding, still bloating, and not seeing an upside yet. I know it takes “time” but I haven’t felt a teensy bit better. Soooo, I started a hybrid of Candida/SCD Dieting today. The herbalist that “fixed me” once before has provided me with the Candida killing substances and vitamins to keep my nutrition up. He seems to think that dieting won’t fix anything without supplements. His analogy goes something like this… “By dieting, you are just putting a bear into hibernation; no destruction is occurring. In order to get rid of the bear, you need to kill it, and that’s what the supplements help you do.” Bear= poison/toxins/yeast/garbage we eat that hangs out in our tummys.

Well, it has worked for me once before, until my lack of self-control kicked in. Has anyone else tried the Candida diet? Or given up sugar like this? Has anyone had colonscopy’s come back positive once and negative another time? Struggling with SCD? Have found no relief from prescribed meds?

Colitis Medications:

This is the tricky part…. I haven’t liked any medications that I have been on. Lialda has worked the “best” for me- but that doesn’t come close to satisfactory. Prednisose has gotten me out of a flare, but that is not the route I will ever go again, my body does not need any more toxins! I have only ever been able to manage my flare with diet, stress management (not easy) and exercise.

For not being able to sleep…. I take “coffee cruda 30C” before bed- it is a natural sleeplessness remedy. They look like small white tic-tacs. They relax me and make me gentle fall asleep. it’s almost as if I sleep like normal people.

Mint teas are a great way to ease stomach discomfort, and warm baths help alleviate the urge (Thanks Princeton Doc.) Also, I wanted to share with you that enema’s have been a godsent from the doctors at Princeton. If you haven’t tried them, It might be worth while. I have gotten “use” to them, and now just lay in front of the couch and watch TV until times up.

written by Danielle

submitted in the Colitis Venting Area




Ulcerative Colitis Tips


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14 Responses to Where To Go From Here? This Feels Like A Roundabout…

  1. Rachelle March 19, 2012 at 8:11 am #

    Hey! I was diagnosed with uc last april. Although after being on prednisone for a week most of my symptoms went away. Being a typical 20 year old, I decided to start eat junk food and drink alcohol again. (BIG MISTAKE!) I finally got in with a specialist in September, and had a small scope done. He told me there was no active ulcerative colitis, yet two months later I’m starting a flare up… I have tried the Candida cleanse as well at some point. I hated it because I cant swallow pills and it tasted aweful so I didnt stay on it for too long. But when I did I had to take 5 days of work, and I felt really awful, but it did help.

    Hope this helps!
    Best of luck

    • Danielle March 20, 2012 at 10:54 am #

      Rachelle,

      Yes, there are a lot of pills to take when it comes to the supplements. Right now I am taking: 1 digestive enzyme after every meal; 2 vitamins; an iron pill for my anemia; 3 candida cleansing pills before bed; and gut powder once in the am and once in the pm and “overdosing” on probiotics! It is a lot to remember, but I have them right next to me keys in the morning, and I pack them in my lunch box, too.

      Like I said, this has cured me once before… hopefully this is my cure-all, now.

      Good luck to you!

      • Lindaxvgn September 26, 2012 at 10:12 am #

        Danielle,
        I was inspired to write this because you said you take iron pills for anemia. I have recently been turned onto this book called “Could it be B12”
        You might want to read up on B12 deficiency, pernicious anemia, and MTHFR gene mutation.

  2. Shirl March 19, 2012 at 8:26 am #

    Hi Danielle,

    So sorry on your diagnosis. I too had doctors unable to figure out why I was so sick in my teen years, and label it incorrectly as IBS, knew remission & flares well, and not until age 36 get a proper diagnosis through colonoscopy this past August while hospitalized with Ulcerative Colitis.

    You are quite good as describing this as a “Roundabout” and it very much is a path that we take over & over. I have learned to appreciate the “good days”….and often without rhyme or reason. I had tried diets many times before being diagnosed, and with mixed results.

    You are correct the Yeast free, and the SCD are very conflicting and I’m willing to bet for each person it is different for effectiveness. I found either to be difficult to keep sugar or bread of my diet, and it didn’t necessarily work. My thought is, rather than exclude…to find a balance. I eat bread, but I make sure to take a probiotic (and one with varied bacteria) and yogurt too. I don’t avoid sugar but try to limit sodas- and found I tolerate Sierra Mist since it has real sugar [Corn Syrup is far more inflammatory]. I also avoid Caramel Coloring, a trigger for me. I avoid Sugar free products. Saccharin, NutraSweet, Splenda are all manufactured chemicals & very much have documented evidence that shows they are inflammatory by nature & contribute to brain fog as well. Visit Mercola.com to learn more on Artificial Sweeteners & IBS/IBD. My GI Doctor even warns about Sugar Free Gum!!!

    So sugar is not the enemy, just balance it out. I can’t eat steak, lettuce, spinach, nuts, corn etc….my body just can’t deal with breaking it down. So my diet is more fish, broccoli & brussel sprouts [cooked only], pasta, chicken, soup, mashed potatoes, mild burritos etc. I think every person out there has triggers & it takes time to figure it out, and conversely what is safer. I would also say sugar feeds yeast, so if there is an overabundance….that can be problematic.

    I also think you are correct on stress, and I had to reduce my workload to stay in remission. I can’t handle a huge day & have to limit the fun stuff. And yep drinking alcohol can definitely flare the UC. It’s hard to be young and feel limits, friends don’t necessarily understand UC. Or how stressful it is to not have a bathroom handy, or to not “look sick”.

    The meds: I am not sure on them myself. I have been off & on Asacol- in high doses I felt the brain fog was debilitating (up to 4800 mg per day) but it helped after weeks of taking it. I recently tried Sulfasalazine for joint pain with the UC & it really made me ill. I don’t wish to try it again. I take the pro-biotic and a supplement from Canada- Purica Labs (Recovery Extra Strength Capsules) They really do work on joint pain & they have a form that worked miracles on my arthritic horse, but I am not sure if it will help intestinal inflammation. I hope to try it out without Asacol & share my findings on here.

    Best of Luck, and blessings for the courage to share your story.
    Shirl

  3. joanne March 19, 2012 at 8:38 am #

    Hi Danielle,

    So sorry to hear that you are not feeling well :-( . I can totally related to how you are feeling. I have been in the worse flare up since October 2011. I was experiencing “accidents” all the time. I even had to quit my 2nd job because I just could not handle it. And YES stress cause my flare up.

    I was in remission for years. Yes, i had minor flare ups during those years but nothing that didnt go a way in a few days. Right now i am on Asacol HD. I take 2 pills 3X’s a day. My dr. also prescribe me steroids and I refuse to go on them. I was on them many many years ago and remember every side affect and dont want to go through that again.

    I sign up for Adams newsletter, and i have to say, what Adams says is soooo true. I am also getting his book and his cook book.

    Until his books come in, I started removing things from my diet and it seems to be working….. i first did what breads and replaced with multigrain and with wheat. I also took out white rice and noodles and replaced with brown rice and wheat noodles (which i have to admit, are very good) and i also have been trying to monitor my stress. Which is very hard to do. I really don’t drink that much…. maybe a glass of wine… I have learned that i can not handle red wine and i also order my wine with a splash of club soda and ice.

    Hopefully this info will help you a little to start feeling better.

    Stay positive, stay strong and keep us posted on how you are doing
    Joanne

  4. James
    James March 19, 2012 at 12:52 pm #

    Hey there Danielle!

    Boy oh boy, do I know how you feel. Sounds like diet was working for you in the past. Sure hope that it helps you now. Diet is the area that I need to concentrate on. So far, I will admit that I have not been very good at controlling what I eat or drink. It takes a change in life style and many people find it very hard to do….including myself. But, I know that if I want to get somewhat better, it is best that I control what I eat/drink.

    I am convinced that stess has something to do with flare ups. Unfortuneatly, I am fighting to control my stress level. I have panic attacks from time to time if I am put into a situation that I feel that I cannot get out of quick enough. It does not matter how big or small a situation can be, the panic attack can kick right in. I feel that it is a “catch-22” and my UC feeds off of my panic attacks and my panic attacks feed off of my UC. Go figure… :o)

    I suggest that you keep posting and try to be active here on this sight. You may find things that will help you with this horrible disease.

    Keep posting and keep in touch!

    James….

  5. Christina March 19, 2012 at 3:52 pm #

    Danielle,

    I can definitely relate to how you are feeling right now. I have tried almost everything to stay off meds but it just has not been helping me. After I was diagnosed in 2010 I was on Lialda and was almost symptom free for a year and then I flared again. I did noticed I was at a stressful time in my life. Ever since then Ive been off and on prednisone which usually helps but its such a rollercoaster. Before I was ever “sick” I hated even taking tylenol for a headache and now Im on anxiety meds, prednisone, Lialda and others and daily suppliments. My Dr keeps suggesting that I take Imuran. I have been SO scared. Ive been meaning to get food sensitivity testing done and allergy tests. I started lots of natural suppliments for awhile and then it just didnt get better. So Im actually sitting here today trying to decide if I should take the Imuran like my Dr suggested. I used to be totally against drugs and now I see how far Ive come. I dont like toxifying my body any more or putting my body in a position for a nother disease etc. BUT Ive been in bed long enough, bathroom too that Im starting to think about living life again. Its such a hard decision to make but I want to live! This UC has taken over and I am figuring out that I just have to fight it. So, if the diet works for you, I say go for it all the way and if it doesnt, do what you can to get better (thats where Im at). I wish you all the best and you arent alone – there are many of us here right in the same boat as you!! Hang in there!

  6. Jen March 19, 2012 at 4:44 pm #

    Hey Danielle
    I can relate. I have been dealing from this illness for 3 yrs now and it is up and down, like a rollercoaster.

    My advice to you regarding the SCD is to do it from the INTRO DIET and then sloooowly build up your foods from there.

    When starting the SCD, I made the mistake of just eating any foods allowed on the diet and eliminating those that are not allowed. Big mistake. I flared worse than I have since this illness emerged 3 years ago! So then I went back to the beginning and did the intro diet – not exactly as described in Elaine’s book, but as outlined on the SCD Lifestyle website. You can download a free chapter from their e-book on starting the diet – after doing that I decided to buy the whole book and it has been a godsend. I also had to stop all supplements and vitamins and when I work them back in to the program, you better believe that they will be SCD legal only. Check out GIProHealth for all of this gear.

    Anyways, after 5 days on the intro diet (the maximum recommended) – the bleeding – STOPPED! I could not believe it. I could not believe, that contrary to what pretty much every GI doctor says, that DIET could stop the bleeding. I actually cried with joy, as I was determined to not go on the dreaded prednisone to get the flare under control. I have now been having *ONE* *BROWN* crap a day. Things are still tender and shifting around in my guts, but great changes are underway, I can feel it! When I started the intro diet I cleared my schedule and did not work, taking sick leave. This was crucial as you do experience die off of all those yeasties and nasties you were talking about. For me it manifested in fatigue, back ache, head ache, emotional upheaval —–

    Previous to doing the intro diet, I was following the SCD protocol but was binging on “allowable” foods – such as fruit and honey, the SCD yoghurt, and the nut-flour baking. It was a case of too much too soon – feeding the nasties in my gut with the simple sugars, and asking a comprimised gut to break down what are considered ‘advanced foods’ re: the nut flour. Now that I’m following the SCD Lifestyle protocol for the introduction of new foods, I’ve found that fruits and honey are introduced very gradually, in moderation, so as to keep things in balance. Fruits and veggies are introduced gradually, cautiously, in their most basic form (boiled all to hell then pureed), fats are kept to a minimum etc. It’s all about allowing ample time for the gut to heal and the microbes to rebalance.

    I’m writing this to you as I am filled with optimism as to where this diet will take me – hopefully, to a whole new level of health.

    Best of luck with it all

    Jen

    • Danielle March 20, 2012 at 10:45 am #

      Jen,

      That is so great to hear that the SCD Diet is working well for you. Your positive outlook also can’t be beat! I did do the intro diet, and I found it easy to follow- but after the intro diet, I, too, also introduced honey and other things that were SCD-legal, even though my body might not have been “ready”. I lasted about 3 weeks, but felt the same brain-fog, trips to the bathroom… and all. The thing was, I have hated grape juice my whole life- and now I was drinking it daily- and I think my body did not like it. I don’t drink soda/juice to begin with, I am a seltzer girl, so I think the sugary juice was giving me diarrhea. Just a guess. I am wishing I followed it strictly, but for some reason I couldn’t go through with it. As a teacher, some days I don’t even have a lunch break (recess duty, grading papers, lunch detentions…) so lunch is always a quick thing for me, and the preparation of SCD really killed me. Also, since I wasn’t feeling better (or worse), I kind of gave up on it. That’s when I decided that the Candida diet fixed me once, so maybe it will fix me again.

      I am now 1 week strong on avoiding SCD-illegal food and Candida-illegal food, with all of my supplements, and I think my body really is getting rid of toxins. Whatever is coming out of me smells absolutely rancid. (Which I remember from the first time). I am also experiencing ZERO brain fog, and have been sleeping with no complaints. I do have to use the rest-room frequently, but as I remember, this slowly calms down as my body gets closer to yeast-free.

      It is early yet, but I am hoping for the same improvements I once experienced. I am also going to start yoga. I have heard only great things about it, and as I believe… stress, diet, and exercise are the three culprits. Diet is in place, now is time for the stress and exercise management!

      Do you do anything in particular to manage stress? Or is that not an issue for you?

      • Jen March 21, 2012 at 3:22 pm #

        Hey Danielle
        It’s a good plan you have with the yoga. I am a yoga (and contemporary dance) teacher so I’ve been practicing for years; that, meditation, and breathing techniques are my stress-busters. Giving yourself time to rest, relax and “flop” as I call it is also key. I teach vinyasa yoga which is a dynamic style – you can start there, or go a little more gentle with ‘hatha’ yoga or even a gentle restorative class. It’s all good. Try a style out a few times before you decide if it’s for you – if not, try a different one! You’ll find something that feels right.
        Regarding the grape juice, were you diluting it with lots of water? I only fill up the glass about 1/3 with gr. jc, the rest with water (or soda water). I also do the same with apple cider – and I drink lots of plain water as well. I find that keeping your fluids up is really important for the flushing/ detoxing our bodies are undergoing (I, too, have had some pretty foul smelling craps of late so I know where you’re coming from with that one :)
        Sounds like you’ve got a plan with the diet. Hope it goes well for you and you stay strong. It is a giant pain in the ass; all the planning and preparing of food, but I think the effort is well worth it. Best of luck and hope things continue to improve, for both of us :)

  7. Trish March 20, 2012 at 12:58 am #

    Hi Danielle. It sounds to me like you need to accept that the management of your illness is really in your own hands – though medications are brilliant in the short term, their effect often wears off pretty quickly and then you can end up in a vicious cycle of stronger and stronger meds. You are NOT like other people – having UC is like having diabetes, you cannot go around comparing what you can eat with what other people can eat – it will drive you crazy. The trick with diet is, don’t focus on what you can’t have, but on what you CAN have. Don’t say ‘vegetables’, say carrots and spinach and aubergines and cabbage and cauliflower and….

    The SCD is a different way of eating, not a deprivation you’re being punished with. Be grateful – you have been given a wonderful opportunity to get well with the SCD, it’s just that you’re used to eating the Standard American Diet, which is probably the worst in the world. And, btw, don’t forget that there are a lot of corporates that have vested interests in getting you addicted to crappy food – I particularly notice this with American addiction to ‘sodas’ as no adult in Europe drinks soda with a meal, we drink wine or water, or – in England – tea.

    Also, the SCD and anti-candida don’t clash at all – just avoid fruits, etc, until the candida is gone, and the SCD yoghurt in particular is a fantastic yeast-killer. DO follow the diet from the intro onwards exactly as outlined in Breaking the Vicious Cycle, with the intro chicken soup, etc, and build up gradually with a new food every two or three days to see if you can tolerate it. Take the time to sit properly and enjoy your meals (here in France, lunchtime lasts two hours), and chew every mouthful until you can’t tell what the food is by its texture – this tip alone can work wonders.

    The way I think of SCD is that it’s like a marriage – don’t go into it looking for ways to cheat, but take the trouble to commit to it. You will probably never be able to eat all the things that are ‘allowable’ on the SCD – for instance, I don’t eat many almond-flour products and I can’t have blackberries, raspberries, etc. But the SCD has kept me well and med-free for seven years – it CAN be done – and I don’t spend every waking minute in the kitchen. The DH and I live on steamed veg, stir fries, roast chicken, grilled salmon. I cook him rice/potatoes/pasta to have on the side, etc. When we hike, I take a tin of tuna in oil or sardines and a piece of fruit. The world need not revolve around bread.

    Oh, and re the different diagnoses, I had that too – years of being told it was IBS, a sigmoidoscopy that found nothing, and then years later a colonoscopy that found ulcers in every part of my colon. Medicine is an art and not a science! I’m sure many of us on here have had similar findings.

    Good luck. Trish :)

    • Danielle March 20, 2012 at 10:51 am #

      Trish,

      That is all such wonderful advice. I am really going to try and be more positive and talk about what I can do, or eat, instead of focusing on what I can’t have.

      Great analogy about marriage and SCD, as well. I am also becoming quite the chef; as I am learning most food at restaurants has all types of things in it that… well, we don’t know where they come from! So, I am slowly learning and adjusting to cooking every day.

      Thanks for your input!

  8. natalie March 25, 2012 at 12:52 pm #

    hi i to have UC iam having a flair up at the moment and i cant find a diet thats helping me. does anybody know of an efective diet that will help me. thanx :(

    • Anne in CA May 25, 2012 at 10:51 pm #

      Hi Natalie,
      Consider having the IgG Antibody test done by Sage Medical Laboratories based in Florida. The test is a simple blood test. You can also schedule a phone conference with Dr. Dantini at Sage and he can explain the theory to you. Surprisingly to us, foods that should normally be considered healthy were really bad for my daughter.

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