20 And Trying to Kick Colitis Out of My Life

Soccer player with colitis

me along with my best friend

I am a 20 year-old female student-athlete attending Miami University. Playing Division 1 soccer at Miami, has been for three years. (Though this may be my last, thanks to this dang disease). Currently a Junior.

My Symptoms:

-diarrhea (lots and lots)
-bloody stools (basically every stool)
-urgency (not able to hold/make it to bathroom in time)
-wake up numerous times throughout the night in order to go to bathroom

My Story:

It was pretty crazy how I was diagnosed with UC, and a story I have to explain numerous times because people (and myself) do not understand how this all of a sudden came about. Ever since I was 5 years old, sports were my passion- specifically soccer. By the time I hit high school, I was a Varsity athlete for both soccer and basketball. I was a normal, healthy high school student with nothing but high hopes for my future. During my junior year of high school, I had verbally committed to Miami University for a scholarship to play soccer. I was extremely excited, because it seemed as though all of my hard work had finally paid off. Then my senior year rolled around and it was a year that would completely change my life.

I had started having symptoms the summer going into my senior year, so this would have been summer of ’09. During soccer tournaments throughout the summer, I found myself running to the bathroom numerous times. Every time I went, the product was always diarrhea. I told my parents but we all did not think much of it. My parents assured me that it was probably “runners diarrhea” and it was due to the fact that I was so active. So I continued throughout my senior soccer season, where the symptoms only increased. As fall rolled around, so did my stomach cramping and pain. After winning a state championship (still the coolest experience of my life), my parents decided to take me to our family doctor and see if anything could be figured out.

At first our family doctor diagnosed me with IBS, which he gave me these blue pills that did not work in the slightest. With zero relief, my parents next move was to take me to see a G.I doc. The G.I doctor thought it could be Celiac’s Disease. I had an endoscopy, which they found that I tested positive for Celiac’s. Though at the time I had no clue what that meant, I transitioned to a gluten-free diet. My family and I were relieved, because it seemed as though we had found a solution and I would heal up good as new. We were wrong. After being on a gluten-free diet, my symptoms still remained and I felt more sick then ever. It was January around this time, I remember because I was in the middle of my basketball season. One day I kept having the chills and then I would spike a fever, my stomach hurt extremely bad. It was almost as if someone was taking a knife and stabbing me in the stomach, and then the pain would spread throughout my entire body. My parents took me to the hospital, where I was given some good-feeling drugs but the doctors still couldn’t figure out what was wrong. After staying the night, I went back home and started up my basketball practices again.

I still was feeling awful and right when February rolled around, my life would never be the same. On a Monday morning before school, I just felt off. I told my mom and she thought that maybe if I ate something, I would feel better. As soon as I took a bite of yogurt, I knew something wasn’t right. I started walking to the bathroom and BAM, it was like I was hit with an unforeseen force..I started projectile vomiting and going from the other end, at the same time. It was crazy how I could not make myself stop, I was so shocked by what was going on. After the spewing was finished, I went straight to bed- where I stayed for a week. It was not a fun experience. I couldn’t eat anything, because I would spew it back up as soon as I was done. If I was not throwing up, I was headed to the bathroom in order to go from the other end. It was disturbing really, I just kept seeing myself becoming skinner and skinner with every trip to the bathroom. My parents and I thought it w as just the flu or a bug, but after a week of this torture, I had had enough. I was off to the hospital again.

During this one week period, I had lost 17 pounds. I was exhausted, tired, and extremely scared. I had no clue what was going on with me. I stayed in the hospital for a week, attached to an IV when I should have been finishing out my senior basketball season. I was in the hospital for a week when they finally diagnosed me with UC (I was 18). I had no clue what was going on, or what UC even was. I had never heard of it before. They started me off on Prednisone (ohhh how I hate that drug), so I was a puffy-mess for my senior prom. I know I needed to gain back the weight, but I felt like I had gained it all back in my face. They prescribed me Asacol and Pentasa, both of which had zero effect. The doctor kept resorting back to the steroids, which I was not a fan of.

The summer before my freshman year of college, my parents thought a natural-route would help the healing process. They had been doing research and wanted to try and heal me without the medications. I was worse then ever, pretty much pooping myself every time I could not reach a bathroom. It was horrible and I was absolutely miserable. I found a new G.I doctor near my school and have been seeing him ever since. Though I was resistant, the new doc put me back on Prednisone (in order to control the flare). He then transitioned me over to 6-MP. I started Mercaptopurine my freshman year, and at first was extremely excited. This drug seemed to be working and I was seeing better results. Of course, my body would not let me stay happy for long.

Spring season of my freshman year I tore my ACL during my first game back. I was rehabbing from surgery and my stomach issues were still there, but not as bad. I went through my sophomore year dealing with the diarrhea and pain as my new “norm.” I just figured this was how my life was going to be. This past summer (summer 2012), my parents once again thought a natural path would help heal me. Though I still believe that I can be cured naturally, this summer was a disappointment. I had gone on a program designed by a chiropractor who studied holistic healing (please don’t think I am crazy) and tried this for 3 months. I eliminated a bunch of food from my diet, and it was very strict. Though this program seemed like the answer, and has helped many people (according to the book), my body once again did not respond. (Throughout this experimenting with the holistic-diet, I was still taking the 6-MP). Which brings us to the present. I am currently taking 75 mg of Mer captopurine and just finished my 2nd treatment of Remicade. I had heard good things about Remicade, but even after my 2nd treatment- I feel zero relief.

To sum it up, I am absolutely miserable. I have cramping and burning almost all of the time. I was not even able to go on our team White-Water rafting trip this year, for fear that I would have no access to a bathroom which would cause numerous accidents. It was a bummer.

Every time I use the bathroom, it is usually blood. I am scared and at a loss. I hate the fact that I am on prescribed medications, and always have. If there was anyway that I could heal this naturally- I would do it in a heartbeat. I am scared of the side-effects that both 6-MP & Remicade (especially combined) present. I feel as though there is no escape from this. I also am finding it extremely hard to keep up with the demanding life of being a student-athlete, especially since I am seeing blood in my stool every time I go. I am thinking about “retiring” from soccer (I don’t want to use the term quitting, I will feel like a failure). I always told myself I would never allow this disease to define who I am, but it is getting extremely hard to play the sport I love and manage every day life with this disease.

I know this was an extremely long post, and I really appreciate it if someone is still reading this. My dad had told me about this website and after debating, I knew I wanted to share my story. With this story, I hope that maybe someone else can find comfort in knowing that they aren’t alone. I also hope that maybe there is someone who can help or even give a small bit of advice. I am losing hope. I have tried staying positive throughout this entire journey, but it is starting to take a toll on me. If you have any advice, please please please feel free to write a reply. It would mean so very much to me. Thank you for reading. I hope that everyone with this disease will be able to find relief in some way. God bless.

Where I’d like to be in 1 year:

Free from this disease and all of the stress/worry it brings to me and my loving family.

Colitis Medications:

Asacol & Pentasa = didn’t work

Prednisone = love the relief, hate the side-effects it has on my body

Mercaptopurine (6-MP) = Effective for the first couple of months, but then did very little for relief *even after bumping up the dosage. Hate reading about the side-effects. Still currently taking this.

Remicade = Still up for debate, haven’t seen any relief yet. Crossing my fingers though. Once again, nervous about the side-effects.

written by Sarah

submitted in the colitis venting area

88 thoughts on “20 And Trying to Kick Colitis Out of My Life”

  1. Sarah,

    You need to start the Specific Carbohydrate Diet (SCD) ASAP. Do some research about the diet. The anedoctal evidence on the internet is astounding. It is, no doubt, a slow way to heal, but this diet has helped me improve so much, and I have only been on it for less than 4 months. I used to have D or bleeding 5-6 times a day, lots of abdominal pain, cramping, etc. Four months on this diet, down to 2-3 BM/day, mostly formed, very little bleeding, and almost no abdominal pain. It is a very difficult diet to follow, especially if you are still living in a dorm, but this diet is the way to go. After suffering from depression for a long time because of my UC, I feel like I finally have a future thanks to SCD. Look up Elaine Gotschall’s book Breaking the Vicious Cycle. It works.

    1. Hello KK-SCDer!

      Thank you so much for leaving a reply to my story, it means so much that you are willing to share helpful information. I actually followed the diet in Breaking the Vicious Cycle the summer before my freshman year of college and unfortunately did not have positive results. If I am not mistaken, that was the diet with the homemade jello and yogurt? (and other things obviously) Like you said, it may be difficult for me while living in the dorms but I will definitely check it out again and do some research on it. I am happy to hear that this specific diet worked for you! Once again thank you for the information, I really do appreciate it!


      1. Sarah,

        The diet cannot be done in a summer. Nor can it be done as stated in BTVC. You need to follow the guidelines from people like SCDLifestyle with how they recommend to introduce new foods, which probiotics to take when, etc. The point is that you want to heal a damaged gut. Any diet that says it will help right away is too good to be true. Your gut is damaged, and even the foods that SCD says you can eat, you will still have problems with at first. You are already on a diet, as I can see above, so you are getting there. Meds are not the answer.

        1. I agree that meds are definitely NOT the answer and I hate that I have to be on them right now. ( I guess “have” may be the wrong term- I don’t “have” to do anything, but you know what I mean!…hopefully haha) Anyways, I will definitely check it out. As of right now I have decided to try a Paleo diet. I have pretty much eliminated most of what it says to eliminate from my diet already, I just have to eliminate all of the grains in my life now. Which unfortunately means my beloved rice :( It is all worth it though- if it can help the healing process! Thank you for your comments/advice, I really appreciate it! Hope you are having a great day!

  2. As another 20 year old college student I could relate to too much of what you’ve said. First of all the description- “One day I kept having the chills and then I would spike a fever, my stomach hurt extremely bad. It was almost as if someone was taking a knife and stabbing me in the stomach, and then the pain would spread throughout my entire bod” -is exactly how I felt when I was undiagnosed. I’ve been lucky that 6MP with Lialda worked for a good amount of time, and I just received my first Remicade infusion. From what I’ve heard, for some people Remicade works instantly, and others it takes time for it to build up. Give it some time and find foods you can eat without getting sick and stick to those and some multivitamins (also Ensure is good to drink when you’re flaring).

    As nervous as I am about the side effects (and taking Remicade with 6MP), I’d rather try it out then continue being sick. I want to remember what its like to be normal again and not have to adjust my life around this illness. Best of luck to you, Sarah! I’ll be hoping for the best and that Remicade will get you where we both really need to be.

    PS- I refused prednisone when my doctor offered it to me again. I went on it directly after being diagnosed and gained back all the weight I lost +20 lbs in two weeks. TWO WEEKS. The stretch marks were ridiculous.

    1. Hey Olivia,

      Though it is super comforting to have another 20 year old to relate to, I am so sorry you are going through this annoying disease as well :( I have never heard of the drug Lialda before, is it on the same “level” as 6-MP? And, if you don’t mind me asking, are you still on 6-MP and Lialda while having the Remicade inductions? I know I need to be patient with the Remicade, but it is very frustrating when everyone states how amazing of a drug it is and that it’s a “miracle drug!” I just saw my G.I doctor this past Friday and he said that if my third treatment does not work, he will pull me off the drug. He also recently prescribed Entocort, which makes me a little nervous. It is similar to prednisone since it is a steroid, but it is supposed to have less side effects. I cannot go through puffing up again and gaining all of that weight- which leads me to say, 20 pounds!?? I am so sorry, prednisone SUCKSSSSS!!!
      Also it’s funny that you should mention Ensure because I recently started drinking those again. I haven’t noticed a huge “help” when I am flaring, but I don’t feel like eating sometimes during a flare so Ensure is perfect for that! I will keep drinking them and maybe I will see a little bit of a difference during my flares- thank you for the advice! Also, if you don’t mind me asking, have you noticed any relief with your treatment of Remicade yet? (I really hope so!!) Once again thank you for replying to my story, it means so much to me! Hope to hear from you soon!


      1. I think one of the most helpful things when dealing with UC is finding people who relate to you. I was lucky enough when I was diagnosed that one of my good friends had been diagnosed two months before me (we had never spoke of our symptoms when we were sick because we had no idea we were both experiencing them!), I knew a girl from high school with Crohns, and when I got to my college I met a girl who had UC (she had her colon removed but still experienced issues) and a girl in my hall had Crohns! Small world huh? I know for the girl in my hall she knew no one else with the illness, and the day she told me we spent over an hour talking about it together.

        Anyway- Lialda is a mesalamine (sp?) while Remicade and 6MP are immunosupressive drugs (think like this- immunosuppresive drugs like prednisone, steroids, TNF-blockers and all that work on your immune system attacking your colon, while other medicines like mesalamine, and other 5-ASA’s usually try to heal the inflammation of the colon from the inside out). It’s more like Asacol and I took it along with 6MP. I’m currently taking both 6MP and the Liadla while getting remicade ( I get my second infusion next week). I noticed immediately after receiving remicade that I wasn’t going to the bathroom as much and the blood was gone. While I’m going less, things still arent perfect. My stools arent really solid, and there’s still a lot of mucus I guess it is? Ugh, isnt this disease gross sometimes?

        Proper nutrition and even exercise I found really help me when I’m flaring, even though the exercise one can be kind of tricky. Just 30 minutes on an elliptical can help me feel better.

        I have tried probiotics (I used Align but there are some other ones that are supposed to be really good), but usually when I do take them I try to start when my flares are less severe, for sometimes they can make your flare worse. Also I dont know if you drink it, but stop drinking coffee, and try not to drink beer. Both of those I found are a flare waiting to happen. Usually when my flares get really bad I stop drinking alcohol all together for about a month. it works wonders.

        Best of luck to you! Keep us all updated!
        PS sorry it took me a while to respond, I forgot to ask for followup comment emails…)


      2. Also, don’t jump into the idea of surgery. While it sounds great, it is a 3 month process AND, like my friend Turner here at school, it doesn’t always work. She still has tons of medications to take and experiences small flares (you can get “pouchitis”. Do your research, get a lot of sleep, take care of yourself, and you and your GI will work it out. Humira is always an option too.

        Best of luck!

  3. I wish i could be excited about the Specific Carbohydrate Diet, i tried it for 3 month and it had zero effect on me, not to mention i have tried all the medicin there is, only last for a short while, like max a month then i was back to having a flare up.

    But… then i joined the reboot (http://www.jointhereboot.com/) it did amazing things, only after 10 days on the reboot diet, i was 100% symptom free and had 1 BM/day it was great, it made me remember who i was before i got UC, and that is why i have decided that within a month ill be having the J-Pouch surgery, no more UC and its time to enjoy life again.

    1. Hey Per Vork!

      Like I said in an earlier comment, I tried the SCD as well and did not have the best results. I am sorry to hear you did not have much success with that either. After reading your comment, I followed the link to the Reboot website. I just have a couple questions, if you don’t mind me asking. I clicked the “Plans” link at the top of the website, where it took me to a page with different diet plans. Is there a specific one that UCers should embark on? Or I guess I should reform my question and ask which one you went on that helped so much? You mentioned that this diet helped out tremendously, so I am curious as to why you are having the J-Pouch surgery? (I don’t know if that is too forward and I apologize if I overstepped my boundaries!) Good luck with the surgery though! I am excited that you will be getting back your normal/healthy life that we all deserve :) I will keep you in my prayers!! And thank you for replying to my story, it is very kind of you to share information- means alot.


      1. Hi Sarah

        The plan i did was a 10 days reboot plan with juicing Vegetables and fruits, what i did was in the morning i would make myself an apple juice as breakfast, and then do vegetable juice rest of the time, i found that the Green Machine vegetable juice was the one i liked most, so i only did that all the time. Joe in the video on the website, did this fore 60 days.

        The reason why i still wanna go thru with surgery even thou i feel ok, is because it was a decision me and my wife made long ago, also the urgencies are still there, even only with 1 BM/day its still a problem, not to mention i still have to take the medicin to keep it in remission, and the side effect are just too much for me, so its time to get rid of the UC, i have talked to so many people who all had the J-Pouch done, and they all are happy they did it, now they are finally back to how they where before they got sick and they can enjoy life again.

        And thats what i want :)

        1. Hello again!!

          Thank you for the information on the Reboot program. I think right now I am going to try a Paleolithic diet because I have heard such good things about it, but I will definitely keep this program in mind. I really appreciate the advice you have given me. It means so much that you would take time out of your day in order to help me out with this tough process, so thank you thank you thank you! Regarding the J-Pouch surgery, I hope all the best for you! It is great that you are taking this into your own hands and getting the problem fixed, not all of us are as brave :) You will be in my prayers!! Once again thank you!


  4. Hi Sarah,

    I have UC too, I’m a bit older than you though (just turned 42), and I was diagnosed about 8 years ago. I have taken Immuran for the last couple of years and have absolutely no symptoms of my disease at all. I work full time, go mountain bike riding, and basically live a normally life. I hope you find something that works for you and you start to feel better soon. I have taken Prednisone in the past when I’ve had a flare up (not for a few years), and I now have to have a colonoscopy every year, but I have a great doctor and fingers crossed I can continue the way I am going!


    1. Hey Amanda!

      It is so great to hear that you are symptom-free and that this medication is working wonders for you! :) I will have to do some research on Immuran, maybe that will be the next step for me if this Remicade does not start to kick in soon. Were you on any other medications (besides prednisone) before Immuran? Also, are there any nasty side-effects you’ve had to deal with while on Immuran? Thank you so much for responding to my story, it means a great deal to me that you took the time to share information. I am extremely grateful :) Once again, so great to hear you are doing well! Hope to hear from you soon!


  5. Hi Sarah, I’m 18 and I started having similar feelings in 2009 as well. I did the whole Asacol and Prednisone scene. And it helped on and off but eventually ( 2 years later) it wasn’t helping anymore. The next step was Remicade and the serious side effects were a definate no for me. So I started working on my diet and I found out that I am extremely sensative to gluten and wheat products. I decided to try going on a gluten free diet in August of 2011 and slowly but surely the sensations and problems linked with Ulcerative Colitis went away! I am full of energy and back to my normal self. My advice is to try some other methods before diving into medication that can cause irreversible side effects. Try looking at making some dietary changes. I hope this helps, by the way I’m a huge women’s soccer fan and hearing that you play for Miama is awesome!!!

    1. Hey Zach!

      I am glad to see that there is another person out there who believes diet is a cause for this disease, my doctor doesn’t seem to think so (we butt heads on the issue haha). Anyways, I am glad that you have had such success with the gluten-free diet, and I wish I could have the same luck with that! I have been gluten/wheat free for 2.5 years now, and have been gluten/wheat/dairy free for about 5 months now. My family and I have been trying to adjust my diet in order to help with this, but so far we have struck out. I guess we will just have to keep fighting on until we can find something that works. It’s also great hearing that there are soccer fans out there! (I bet you watched the Euro cup this summer, because I did, and let me tell you- AWESOME!!) Anyways, once again it is great to hear that you are healthy and well! Thanks for responding to my story, means so much! Hope all is well!


  6. Hi Sarah,

    I am so sorry to hear about what you’ve been going through!!! Thank you for sharing your story with us. You have found a great place to find support.
    First of all, no, I don’t think you’re crazy. I think we all have been looking for a “magical” way to cure UC.
    I actually have been following a treatment plan from my chiropractor. He is so intelligent and he’s been the only one who has helped me so far. I couldn’t stand the side effects from the meds prescribed by my GI, plus I am skeptical of all doctors and I don’t trust the pharmaceutical industry at all…

    I think that my husband and I spend about $200 a month on my vitamins and supplements on the treatment plan that my chiropractor has me on… but it’s worth it.
    So, have you tried PROBIOTICS??? If you haven’t, that’s where you should start. You need to build up the good bacteria in your GI tract. I take Primal Defense by Garden of Life. (And I take 12 of them a day.)
    You need to get some “anti-inflammatory action” going in your colon, so you should take Vitamin D. I would ask your chiropractor about the dose you should take. (I personally take 20,000 IU per day, which is way way higher than the norm).
    Other anti-inflammatory supplements you could take: Fish Oil and turmeric. You could take B-12 if you’re fatigued (I was, due to the extreme blood loos).
    I also am on an extremely strict (anti-inflammatory) diet. I am gluten free, soy free, corn free, sugar/fructose free, and only ORGANIC dairy. (My whole diet is pretty much organic.) I also am not eating anything raw for a whole year… I pretty much eat cooked vegetables and fish (salmon). You should try to eat as much food with Omega 3 as you can. (I also eat almonds and cashews.)

    The newest addition to all of my vitamins and supplements is CLA. My chiropractor showed me a new study about Crohn’s /UC and CLA. Here’s a link to the article: http://www.sciencenewsline.com/articles/2012031917050047.html
    I’ve been taking CLA for over a month now, and it’s really made a difference!!! I would recommend it!

    I buy almost all of my vitamins online at http://www.swansonvitamins.com/ It’s cheaper than buying them in the store.

    You could try drinking coconut water to help with the intestinal pain. It really worked for me. I drink 17 oz. of coconut water a day (Vita Coco brand). I drink half in the morning and half in the afternoon. It got rid of my pain/cramps!
    I also take a TB of Flax Oil a day… it helps with some of the other weird symptoms of UC.

    Hang in there! Sending you lots of hugs!!!

    1. Dear Polly,

      Thank you so much for your informative response, it honestly has made me extremely excited! I apologize if this response is a bit lengthy, but I have a bunch of questions for you! (haha lucky you right?) Before starting this diet plan with your chiro, were you on any medications prescribed from a doctor? I believe you answered this during your reply, but is this diet allowing you to be in remission/ feel normal again? If so, I think I am really going to try and go on the same things- because I have somewhat started to do a couple of the things you mentioned but was uncertain if it was worth it or not.

      During this past summer, my parents dropped more than $600 on various probiotics/digestive enzymes. We followed the plan by this chiro (have you ever heard of Dr. Dahlman? We followed his natural-healing book for IBS, UC, & Crohn’s and I also had phone consultations). Anyways, the supplements were from Metagenics and 2 of the main probiotics were LactoViden & BifoViden..which I took everyday of the summer. I also took Azeo-Pangen and Intseol (digestive enzymes you take before eating to help with digestion) and then a product called Metagest (which you would take after each meal to aid with digestion). Then I would take this anti-inflammatory powder (which I would mix w/ water) twice a day, which was supposed to help with the inflammation. I also had an allergy test done. The results showed that I was allergic to 76 out of 88 foods, which was unbelievable to me. I started a “rotational diet” while also on a gluten-dairy-soy-peanut-legume-certain veggies free diet. After not seeing much progress, the chiro suggested a fructose free diet as well. He said that with the fructose free diet, I should have been seeing progress within a week. After 2 weeks of being fructose free (along with everything else) I saw no improvement, so I went back to eating fruit. Maybe 3 months was not enough time, but my actual chiropractor back home thought it was time for me to move on from that plan and try something else. He believed that I should have seen progress within 10-12 weeks. He advised me to take a probiotic, vitamin D, and fish oil and then embark on a Paleolithic diet. Has your chiropractor ever suggested that? Or have you ever even heard of it?

      Regarding your suggestions:
      1) For the probiotics that you are taking- does the dosage state to take 12 a day, or is that what you personally take each day?
      2) I am currently only taking 5,000 IU for vitamin D a day. I just texted my chiropractor from back home and am waiting for a response, but maybe I should bump my dosage up as well.
      3) I am also taking fish oil every day. Is there a certain dose that you recommend, or has helped you? Same with the turmeric- any specific dosage?
      4) Regarding your strict diet- I know you said no fructose/sugar but do you ever eat fruit? I just have found it so hard to eliminate fruit, and I have tried before. (like I said only 2 weeks, wasn’t seeing progress, so didn’t think it was worth it) And when you say organic dairy, does that mean you still eat yogurt and cheese? I haven’t had cheese in agessssss, and it used to be one of my favorite foods!
      5) CLA- is there a specific brand that your chiro suggested? After reading the link you posted, I am extremely interested in starting this supplement. Once again, is there a specific dosage your chiro recommends?

      Sorry for all of the questions, I just am really intrigued and want to try and figure this whole mess out. I desperately want to feel healthy again. I know that everyone responds differently to certain things, so items that worked for you may not work for me- but I still believe it is worth a shot. Hopefully you are still reading by this point, but thank you once again for the advice. I really really REALLY appreciate it!! :) Hope all is well!


      1. Hi again Sarah…with all due respect to Dr. D if that is his name, he had you trying so many different things how would you have ever known if something worked? Who knows if you took enough, or if you ever had time for the probiotics to work, heck, who knows if they are good probiotics! On the other hand, Polly’s advice was awesome. I could add a few supplements you might look into but I can do that as you figure out what path you are going to take exactly, as that will likely influence the kinds of supplements you may need. I know you want to go hog wild to find an answer but I would avoid trying too many supplements at once.

        Along with my crazy long post below, I wanted to answer what I can of your questions here…

        When taking probiotics, the amount will vary depending on the patient and the probiotic taken—some are better than others. While too much is not really a bad thing, starting slowly and adding them in stages is best. The idea is to balance the gut and overloading the gut is not balance if you get my meaning. On that note, taking digestive enzymes as that doctor prescribed is unnecessary if all you are trying to do is control UC(only you would know if there are underlying health issues). With good nutrition in mind and avoidance of problem foods(dairy, gluten, grains, etc), a solid probiotic like the one Polly takes or the one Bev here takes is plenty.

        As far as vitamin D, if I read you correctly, you are past the upper limits of what is recommended as safe. I’d suggest dropping it to at least 3500IU(600IU is the recommended daily intake) or even lower if you spend lots of time outside or eat nuts/sunflower seeds(I imagine you are out in Miami!). Keep in mind that vitamin D is fat soluble. That means it is stored in the body in fat. Without eating fat with it, you won’t be able to use the vitamin D. Fat soluble vitamins are difficult for the body to remove—think of how long it takes to lose actual fat—so they can build up to excessive, dangerous levels.

        As far as fish oil, the 2 to 1 ratio Zach I mentioned is good. Myself? I’d get the fish oil as naturally as possible and find other means of getting my omega 3s to control the inflammation. Why? There are conflicting studies that suggest it can do just as much harm and there are other options. Not to mention, it can interfere with other medicines—none of which I would suspect you on—outside of birth control.

        The turmeric…I don’t know nearly as much about this but I can’t imagine it being hurtful as long as you are not allergic or something like that.

        The CLA I’ll leave to Polly since she is the first I have heard of it.

        If I didn’t really make it clear before, I would try one anti-inflammatory/supplement at a time with your dietary changes. Then you can fine tune everything as time goes on…you may find one doesn’t work and have to move on…but your concentration should be dietary along with adequate rest first. In other words, while supplements are a great tool, they do not replace good health practices.

        As far as diet, you seem to have the idea that fruit is bad and I do not know why—did someone tell you it was? Because they would be horribly wrong. Bananas are some of the best natural foods for UCers. A problem many UCers experiencing symptoms seem to have is eating a piece of fruit after just eating or while eating other foods. That chicken you eat is going to take far longer to digest than an apple which is in and out in a little under a few hours. In other words, it all comes down to food combining. Otherwise, if like you fruit, eat it up. Fresh organic is best, frozen organic great too, fresh/frozen non-organic is okay, and cooked/canned is generally not so good(they add refined sugar which is bad for a UCer). Fruit is made up of simple sugars…things we handle without an issue. If you want more tips about fruit, just ask…like peel your apples while suffering symptoms, avoid citrus-y fruits when sick—they are acidic and can be harsh with a weakened gut, etc. I’ll hush now but most of trust yourself. :) Steve

        1. Steve, thanks to this post from you I will now take my vitamin D with lunch, when I eat some fat. I wasn’t aware that it was fat soluble! I’ve been taking it in the morning with my probiotic, on an empty stomach…DUH!

          The astaxanthin is also fat soluble, and works the best when taken with fat. I’ve been taking that at lunch.

          Thank you again!

          1. You are quite welcome Bev. I have many thanks owed to you as well. More than you are allowed to know just yet because I don’t want to jinx myself after just two days but I’ll let you know soon! :)

        2. Hey Steve!

          Thank you so much for answering some of my questions. I am a very detail-oriented person (if you could not already tell by my extensive story and long replies to comments) so I appreciate lengthy messages :) Hopefully you won’t mind my lengthy response back!

          First off, thank you for giving me some reassurance. For awhile I thought that stopping the Dr. D’s program was a mistake. I mean while I was on his program, I didn’t see a huge change but I was definitely better then I am now. I did not know if that was directly correlated or not, but I definitely need to find some good probiotics. It is also nice hearing that the digestive enzymes are unnecessary- cause I was still taking them here and there. Now I will finally push those to the side and focus on other supplements/vitamins. Though I am already avoiding dairy and gluten, I saw that you mentioned grains. Based on earlier comments and actually something my chiropractor had mentioned awhile ago, I am starting to steer clear of grains (the transition is harder then I thought! Mostly just cause of rice, I love rice) That being said, what are your thoughts on a Paleolithic diet?

          Very interesting information regarding Vitamin D. When I said that I attend Miami University, I should have probably mentioned that it is the one located in Oxford, Ohio haha. The weather is really nice currently though, so I like to run or go on walks now- so hopefully I am getting some Vitamin D from that. I used to get alot more during soccer practice, but I will take what I can get. I will look for a new vitamin D supplement, one that is less than 5,000 IU. Thank you so much for that advice!

          After reading Polly’s comment, I decided to go out and get tumeric and the CLA. So right now I am taking vitamin D, fish oil, calcium supplement, tumeric, and the CLA on top of the probiotics and my medications prescribed. Do you think that is too much? When I went to the local vitamin/health store here on campus yesterday, I also picked up an item called “CuraMed”. The guy working at the store told me it was a natural inflammation response pill. The maker is Terry Naturally. I have not started taking that one yet, for fear of taking too many things- but what are your thoughts? Do you think I am taking too many things already or would it be safe to take another anti-inflammatory.

          Regarding the issue on fruit. I LOVE fruit and it was my go-to snack for a very long time. The reason why I began to have reservations about it was while on the Dr. D plan, I was not getting better after 2 months. His suggestion was to try a fructose-free diet, along with everything else free that I was on. So for awhile, I had the idea in my head that fruit was bad and was causing my stomach issues. I guess I was fearful that I had a fructose intolerance? I meant to get tested for it, but the hospital here on campus does not carry out that type of test. Now that I am trying this Paleo diet though, I have started eating a bunch of fruit again. So it is true that I should peel off the skin on certain fruits? I didn’t realize that skin on a fruit would cause issues. Interesting. While I was on the Dr. D program (before being advised to go fructose free) he was very adamant on eating fruit by itself. I believe it was 15 minutes before eating any other type of food? Does that sound correct?

          Once again thank you for sharing information with me, it really does mean so much. Sorry about all of my questions- I just want to be as best informed as possible :) Once again thank you and have a great day! Hope to hear from you soon!

          1. I feel about as stupid as a box of rocks…I started at the bottom of your page and worked my way up not thinking there would be more to answer. Don’t worry about your questions. My brain is always going 100mph so I know the feeling.

            A Paleo diet? Meat and produce do not generally mix well together in the gut. The meat takes a long time to digest where as the veggies/fruit take an hour or two tops. If you combine them, it causes digestive distress which I can explain better if you want to understand. I’m not saying it can’t work because SCD is the same way, it just goes against other things I know.

            Are you taking too many supplements? My thoughts and studies are screaming a big fat yes…but you need to do what you feel is right. My advice? I’d love to help you start over and move slowly so you know what works…if you are interested. My understanding is you’re in the hospital so I don’t know what you are taking now in terms of supplements.

            Yes, skins can cause issues with fruits as well as seeds. Certain fruits combine well together while others do not. Fruit is best eaten as the first meal of the day and a good 2-3 hours in between meals is great. There are all reasons for this which I can share later but fructose could only be bad if you were allergic to it. If you love it so much, you may want to ask me about the other diet I suggested earlier.

            I welcome your questions and I am sorry it took me so long to write back. I should be around regularly now so let’s talk! Steve

      2. Hey Sarah,

        I did not see your response until just now… so I apologize for not writing back sooner!

        I was NOT on any prescribed medications. (I avoid all medications unless absolutely necessary). The GI prescribed me Canasa suppositories and I took them for about 10 days, and the side-effects were just too much for me. Among other things, I think they were too potent for someone of my body size and weight. But I hate medications anyway, so that’s fine.

        No, sorry, I have never heard of the Doctor or book that you mentioned… a couple of good reads for you (in your “free time”… ha!!! what’s that?!?!?!?) “Wheat Belly” and “Breaking the Vicious Cycle”

        Yes, this diet has allowed me to lead a “normal” life in remission… but the path getting here was not easy… I had a horrible horrible flare-up and many things in my life changed (I had to quit my job)… I did not feel “normal” for a good 4 months. I didn’t feel like my life was my own and I cried all the time. It was rough.

        I had lots of issues during my flare up, but a big one for me was lots and lots of bleeding… I would suggest that you and your family invest in a juicer and start drinking some cabbage juice every day right away. A few days after starting the cabbage juice, the bleeding decreased significantly. And it has to be a juicer, not a blender. I tried a blender. It doesn’t work, plus the “juice” from a blender is way gross.

        So as to your questions…

        1) Primal Defense probiotic… no… I think the recommended dose is 3 per day. My chiropractor told me to “play” with the doses and get up to 12 asap… I now take 6 first thing in the morning, 4 before lunch, and 2 before bed. Remember that Probiotics work best when taken on an empty stomach with lots of water. So the dose in the morning is really important. It is the FIRST thing I do when I get up. And then don’t eat anything for at least 20 min after taking them.

        2) Vitamin D — the miracle hormone. Back when I started the horrible flare-up (I refer to this time in my life as “when I was on sabbatical”)… so, back when I started my sabbatical, my chiropractor showed me an article from the British Journal of Medicine (I have looked and looked for the link online, but I can’t find it). The study showed that a 200 lb. person could take 160,000 IU of Vitamin D for one week when “sick”… I am 5’7” and weigh almost 120 lbs… so he had me take 100,000 IU of Vitamin D for one week, and then taper down… so 50,000 IU the following week, 30,000 IU the week after than, and then down to 20,000 IU. I’ve been at 20,000 IU for… a couple of months now.

        3) Fish Oil and Turmeric… My Doc says that Carlson is the best for Fish Oil (and it’s definitely not the cheapest). I take Source Naturals Turmeric. (I also take Source Naturals Vitamin D).
        I take 5 Fish Oil soft gels a day: https://www.swansonvitamins.com/CSN148/ItemDetail
        I take 2 turmeric pills a day: https://www.swansonvitamins.com/SN317/ItemDetail

        4) I have not eaten fruit in a long time, except for bananas. Yeah, it’s hard… if I bake something (using almond flour or gluten free flour), I use organic applesauce (no sugar added) as a substitue for sugar or whatever sweetener is called for in the recipe.
        During my “sabbatical”, my body was 100% intolerant to dairy/lactose. But now I can handle organic cheese OK (in small amounts). I have some raw cheddar sometimes (I am originally from Wisconsin… so… we love our cheese!)… and if I make a gluten free pizza, I put some organic mozzarella on it, but I use like 1/4 the amount of cheese that a normal person would. I’m just very, very cautious of dairy. I started using almond milk for cooking too. (I was never really a milk drinker.) I have not been having yogurt because the second or third ingredient is always sugar or some form of sugar.
        Yeah, I’m on the “paleo” diet. It has a lot of different names. It’s the “anti-inflammatory diet”… some of it overlaps with the “blood type diet”, some of it overlaps with GAPS and SCD… the one thing with me being on the Paleo diet is that I’m a vegetarian. I have been for years… so… I don’t eat meat (except for fish) and I had to warm up to eggs… I didn’t love or hate them before, but I’m eating more of them now…

        5) CLA — I bought the Dr. Mercola brand. (I am a big fan of Dr. Mercola… check out his website sometime in your “free time” lol). I just looked at labels and bought the one that had only CLA listed as an ingredient.
        I take the recommended dose that’s one the bottle, which is 2 per day: https://www.swansonvitamins.com/MRC018/ItemDetail
        As this is a new study, I am the first patient that my Chiropractor has taking CLA. So he said he’s excited to see/hear how it’s working for me. I will see him in about 3 weeks. (He is back in Wisconsin, and I live in Minnesota.)

        You can shop around for vitamin prices, but I’ve been buying from Swanson Vitamins for… years now. They have the best prices that I’ve found (for those of us in the U.S.). And for what it’s worth… they have free shipping through the end of August (saves $5).

        I do not eat out very often, but when I do, I take 4-6 digestive enzymes right before I eat (when the server bring the food and sets it in front of me, that’s when I take the enzymes.) I only eat out at places that serve organic and gluten free… more of the natural cafe/local type places. Here is the enzyme that I take: https://www.swansonvitamins.com/GLF078/ItemDetail

        I feel your pain, Sarah. I’m sorry that you’re going through all this right now, but it will get better. Sweet potatoes (the white ones) were my friend during those horrible days. Almond butter was my friend, and so was cooked spinach. For some immediate relief, have some coconut water and try to find some deglycyrrhizinated licorice.
        The brand I take (Integrative Therapeutics), I get from my Chiropractor, so it’s not available online. I haven’t tried any of these brands, but you could give one of them a try: http://www.swansonvitamins.com/form/Chwbls/specialtydietprods/Gluten+Free/q?kw=deglycyrrhizinated+licorice
        When you’re having those cramps/intestinal spasms, drink some coconut water and chew on a couple DGL.

        I hope I answered all of your questions! Let me know if I didn’t or if you have any more questions.

        1. Hey Polly!

          Thank you so much for responding to my questions! I really appreciate it. And oh my goodness trust me, I have cried more within this past month then I have in my lifetime. Stupid UC/flares and the emotional baggage it brings!!

          My bleeding has definitely become more of an issue. Before it would show up in my stool, but only sometimes, and now it is almost what I am relieving every time I use the restroom :( This is the first time I have heard about drinking cabbage juice but I will definitely get on that! Thank you so much for that advice.

          The information on the probiotics is extremely helpful, thank you thank you! After your first post I went to the local vitamin/health store and picked up Tumeric, CLA, and flax oil. Started those 2 days ago, so hopefully I will see some changes at some point. (though I know I need to be patient). Any advice on when I should take those? Usually I am taking the tumeric and CLA before my main meals. On the bottle it says to take 3-4 of each a day, so I have been taking 3. I know you suggested taking 2 per day, but is 3 an okay amount? I take the Flax Oil a little while after my last meal of the day.

          You mentioned that you are on a Paleo diet but also that you made a gluten free pizza. The Paleo diet says “no grains” but then I have seen that people still continue to eat white rice, but not brown and some other things. So on your Paleo diet, do you still eat a little bit of a certain grain or no? I am assuming the GFree crust on the pizza had some sort of brown/white rice substitute. I am just curious because if I could still continue eating white rice while deleting everything else on the Paleo diet, I would be one happy lady!

          Once again thank you for the advice. I also went out and bought some coconut water the other day- thanks to your advice :) Also thank you for the links and such for the various vitamins/supplements, it helps me out so much! Hope you are having a great day and hope to hear from you soon!


  7. hey girl. our stories are pretty similar. i also tried a natural health route as well and wound up sicker and more miserable. i am taking 6mp again and i don’t notice it helping like it did last time. i had to get off of it in march because my liver wasn’t doing well on it. i started back again a few weeks ago though.

    what is your diet like now? i just started the paleo diet 10 days ago and it’s helped so far. i’m not in remission by any means but i was going to the bathroom about 15x a day. i’m down to 5-7x now which is a huge relief for me. still seems most of the bathroom trips are when i should be sleeping- so annoying- but at least it is less.

    flaring when you’re in school is so hard. i was diagnosed at 17, was fine for 4 years, and then at 21 it just all came back. i’ve been pretty miserable ever since and i’ll be 23 next month.

  8. Hi Sarah:

    I’m going through this same situation with my loved one and the best thing we’ve done is get a stool and allergy test to find out what specifically he’s allergic to. I had put him on the SCD diet and it wan’t working because I was killing him since he was allergic to turkey, eggs, gluten, rye, eggs, diary and soy. So after knowing what exactly I could feed him life changed and it’s amazing that I was one step from putting him in the hospital and now he’s gained 10 pounds and is starting to enjoy life again. And the good thing is……when you find out what you are allergic to, you don’t have to eat things that you don’t like. Modern technology, Whole Foods and Raw Bars has made it very easy to continue to enjoy all your favorites.
    Also, he was told he has absolutely no GOOD BACTERIA in his gut so adding 100 billion cu, with GI Protect and Aloe Water it’s made a world of difference. Now don’t get me wrong, he is still on Predizone, and we are able to tapper off but since we’ve got his diet under control and know specifically what he can and can’t have if he flares up after we tapper things off then this will prove he does need some type of continued medical treatment. We go for 3rd Remicade in two weeks.
    The stool and allergy test might not be covered by insurance, we paid $700 for it but it was the best money spent. Generally a natural medicine doctor will recommend this.

    Good luck to you!!!

    1. Hi Laura!

      I am so sorry to hear that one of your family members was sick with this similar disease. No one should ever have to go through this, especially someone so young :( I am glad to hear that he is doing better though! I also go for my 3rd Remicade treatment in 2 weeks- I will be thinking of your loved one and will say a little prayer for him.
      I actually did get a blood-allergy sample over the summer. The results showed that out of 88 foods, I was allergic (or had a certain reaction) to 76 of them. I was completely shocked- how could my body be that messed up!?
      I started a “rotational diet” (Would eat a certain food- say chicken- once every 3 days. So if I ate chicken on a Monday, I could not eat it again until Thursday) while also on a gluten-dairy-soy-peanut-legume-certain veggies free diet. I tried this diet for 10-12 weeks and still did not see much improvement. Maybe I did not stay with it long enough, but I could not keep up that strict of a diet when I arrived at school earlier in August. I am limited when it comes to the dining halls at school. I am happy to hear that your loved one was able to feel better through diet changes, maybe I just need to keep plugging away and soon we will figure it out. I really hope that he will be able to get off of prednisone soon- I really do hate that drug! I will keep him in my prayers! Once again thank you for responding, your words and advice mean so much!


  9. Hey Joanna!

    It saddens me to hear that your symptoms have come back, especially after 4 years of remission:( But it is exciting to hear you started the Paleo diet, because my chiropractor suggested that diet to me about 3 weeks ago! Correct me if I am wrong, but is that the diet where you do not eat any grains/gluten/breads/dairy? So no rice, corn, gluten, dairy and all of that good stuff? (what specifically do you eliminate?) If it has helped you so far, I would be willing to try it- I really just want to feel better. Are you still seeing progress?
    Though I have been gluten/wheat free for 2.5 years, over the summer I had been on a NO gluten/dairy/soy/peanut/legume/cruciferous vegetable diet and then when I still was not seeing any results, I also went on a fructose-free diet. The fructose-free part only last about 2 weeks, because the person who created the diet said I should have been seeing results within a week. After 2 weeks I was still pretty miserable. I was eliminating so much that I had to put fruit back in my diet. Currently I am on a gluten/wheat/dairy free diet, I try to stay away from fructose and added sugars as much as possible (besides fruit obviously). I also do my best to stay away from soy, but I am more lenient on that now. I guess after 3 months of trying that crazy diet with different probiotics and digestive enzymes and seeing little results, I became frustrated. Not to mention it is hard staying on that strict of a diet while at school and eating in a dining hall. As you know, natural-healthy choices are kind of limited in dining halls.
    Once again thank you for responding to my story, I appreciate the advice and comments! Hope to hear from you soon!


    1. Hello Susan

      Yea im aware that it may have complications, any surgery have that, the 15 people i have talked with who all had the JPouch done, didnt have any problems at all, they told me its all about how well you take care of your JPouch the first year while it recover and get used to its new function, the first year you have to eat well, take vitamins, take omega 3 pills, etc..

      For me its a life choice, im tired of letting UC control me, and if this will remove it, so be it. :)

  10. I take fish oil too. I recommend a 2:1 ratio of EPA to DHA. I take 2 pills a day and I get 1200 EPA and 480 DHA by the ends of the day. I get my supply from The Vitamin Shoppe.

  11. Sarah…

    Please read my posts. I ‘cured’ myself with probiotics. No joke. I have written about it so many times on this site, that everyone is probably SO TIRED of reading it!! Alot of people say they don’t work…but I think they don’t give them time to work, and bail out too soon. It took about two months, and I felt fabulous!!

    I was on asacol for 13 years, and when that stopped working, heck it never really did work, the GI recommended prednisone, imuran, and remicade. After reading about those drugs, I said no way. I was considering surgery, actually, because I hate drugs, and what they do to my body.

    That’s when I decided to take me health into my own hands. I went to the good old heath / vitamin store, and asked what I should take for ulcerative colitis. They recommended a good probiotic, which I prompyl bought, and started taking. Like I said, after two months of taking the probiotics, I was feeling so good, I stopped taking the asacol. I felt even better after that too! The asacol was making me even sicker and I didn’t even know it! 13 years on it!! Everything got firmer, no more pain, no more gas…it was unbelievable, really. I still had a bit pf blood, so back to the vitamin store (I love that place!!), and was recommended L-glutamine, to heal my colon, and astaxanthin, which is a natural anti-inflammatory. I don’t know which one of those two did the trick, but my bleeding is totally gone. That happened almost overnight!! I will take all three things forever…and the best part is, it only costs me about $50 per month for everything! I am six months well now!!

    Please give the probiotics a fighting chance. They cannot hurt you, and you don’t have to stop the other meds…until you feel so good that you aren’t afraid to!! And, you will.


    1. Hey Bev!

      I have tried probiotics in the past, and am still taking them currently, but I agree I probably have not given them a significant amount of time to have an effect. Or maybe I am not getting the correct amount or I am taking the wrong brand. I know there is no specific brand for everyone and everyone is different, but which probiotics helped you the best? There is a vitamin/natural health store here on my campus, maybe I should go check it out and ask them what they suggest? Definitely worth a shot. I am so happy to hear that you are doing so well! Gives me, and I am sure many others, hope and faith that this can be cured naturally! You mentioned to read your “posts”…are your posts in a separate portion of this website? Please let me know- I would love to read them! Any information is helpful! Thank you so much for sharing your information with me, it means so much! Hope to hear from you soon!


      1. Hey back Sarah!

        Mmmm…where are my posts…good question! I have written alot of them, but you don’t have to find them. I told you pretty much everything, in a nutshell! I’m not sure how to go back and read them all, but some of them are very long, and tedious, but with the very same message that you have already read…lol!

        The brand of probiotic that I take is CRITICAL CARE ULTIMATE FLORA, by RENEWLIFE. I’m up here in Canada. Like I said, it definitely doesn’t have to be that specific one. I think you really need to establish a good relationship with one of the health store clerks. They will steer you in the right direction. I was quite surprised by how much they know. They are very happy with my progress now, too, and use me as an example when recommending things to other poeple with intestinal and or bowel problems,

        Back to the key…I think you have to take them for awhile…it wasn;’t overnight that our poor little intestines got destroyed, and healing tham doesn’t happen overnight either. I have read all of the advice that others are giving you, and I know it’s difficult to choose what to try, and know what will ultimately work for you. I just wanted as easy, and inexpensive as I could get, so when I found this site, I read so much info on here from others, and then just pulled out the stuff that came up again and again. You could spend alot of money and take alot of things, and then you may not know what one thing is really working for you. I started with one at a time…the probiotic, and then, after every symptom disappeared, except some blood, I added the L-glutamine, and the astaxanthin. If there had been no blood, I wouldn’t have added them at all! Why add another thing, if everything is a-ok and you don’t need anything else?

        That’s my advice! One thing at a time…slow and steady…we always want things to happen instantly, but I don’t think that is realistic when dealing with a disease such as this.


        1. Hey Bev!!

          Slow and steady wins the race is right….I just need to remain patient! Though that is an extremely hard thing for me because I am really not a patient person. This experience has definitely helped me become more-so though! Once again thank you for the advice, I really appreciate it. Hopefully these probiotics will do the trick!! Hope everything is well with you!


  12. Hi Sarah, I’m so sorry to hear your story!! How frustrating. Just want to ask and say a few things that I don’t see through the comments thread… like everyone else here, this is what worked for me and may or may not work for you! Tough that every body seems to respond differently.

    – when you tried probiotics, how much did you take? the recommendations for VSL3 (for which you can get a prescription) is 4 capsules per day for UC, which equates to hundreds of Billions of live cultures per day. I started out taking 2 a day for a month, then upped it to 3 a day, and when I did that my symptoms finally cleared. Mine were more mild, so I think if you took 4 capsules a day for 2 – 3 months you may see a good improvement.

    – I’m also using astaxanthin (natural, not synthetic, used for inflammation). I’m not sure how effective it is for me, but someone else on this site swears by it.

    – You didn’t mention alcohol or caffeine… hopefully you’ve cut both of them out. Those are the biggest culprits for me, along with sugar. You mentioned fruit… I could do fruit as long as I didn’t eat the skin. Low fiber is key. No whole grains, no raw veggies.

    – stress levels are highly linked to UC. Obviously the UC itself stresses you out! You might consider a meditation practice. I very much believe in the mind/body connection, and it was interesting to start noticing where I hold my tension… in my gut! I find myself tensing up my stomach and gut all the time, and I’m learning to notice that, relax and breathe through it.

    – Lialda and suppositories worked really well for me.

    I so hope you find something that works for you! Keep us posted.

  13. Hey Jennifer!

    -Though I have tried various probiotics throughout this whole ordeal, I will just tell you what I am currently taking. They are both products by Metagenics. The first is called LactoViden ID- in 1 capsule it contains 15 billion live organisms. The second is BifoViden ID which has the same amount of live organisms (15 billion) I take a total of 4 capsules a day, 2 of each. I have been taking these over the entire summer, and then recently when I arrived at school I missed a couple days with them. I don’t know if that is what is contributing to my complete spiral back into feeling so crappy again (though I felt pretty crappy over summer as well). I just don’t understand why they haven’t kicked in yet. Maybe I am taking the wrong stuff? Regarding the VSL3, would I be able to get that from my G.I Doctor or could I get that at a health/vitamin store?

    -I don’t really ever drink caffeine. Usually all I drink is water and then the occasional orange juice for breakfast every now and then. I also really like the AlO drinks…I don’t know if you have ever heard of them? I do not drink them everyday though, it is more of an occasional thing. As for alcohol, I have had some sips in the past and honestly I have noticed it always solidifies my next stool. My parents and I always thought that was odd. Usually when I drink vodka or tequila, this outcome occurs. When you say “no whole grains” does that mean oatmeal is completely out of the picture? Along with rice and corn? (Sorry if that is a dumb question!)

    -Regarding the stress, yes I can definitely relate. I notice that when I am super stressed I have my worst flares. I have decided to leave my soccer team here at school. Unfortunately I just could not keep up with the high-level demands of the sport and my health has to be my number one priority right now since I am doing so terrible at the moment.

    I have a quick question- have you ever heard of entocort? My doctor recently prescribed that to me and I am currently taking 3 capsules of 3 mg every morning (this is my 3rd day on it). I am really unhappy to be on it, I hate any and every steroid on this planet. I really wish I didn’t have to take it but I am so bad. Last night was horrible- kept getting up in the night and every single time it was blood. My abdomen hurt extremely bad, ugh it makes me sick just thinking about it.

    Once again thank you for sharing information with me, I really appreciate it. I hope to hear from you soon!!

    Thank you again,

    1. Oh…. so sad you had to stop your sport!! Do keep exercising… it’s good for you. But do take care of yourself and be gentle on your system.

      Diet: oh my goodness… oats and corn are terrible! Try cutting them out and see how you do. Ditto for brown rice. Any fiber acts like a scrub brush on your very tender system. The only carb I could eat was white rice and sweet potato… oh, you might cut out eggs too. I couldn’t do any typical breakfast except for hot rice cereal (mix in some honey and protein powder so it doesn’t spike your blood sugar) or gluten-free toast with almond butter.

      Many here have written about the SCD diet… that involves cutting out all complex carbs. Note that grains have something called lectins, which are natural pesticides and can really aggrevate the system. The diet is like paleo, if you’ve heard of that. Given your condition, you really might give it a try and see how you do.

      I’ve never heard of entrecort! Sounds terrible!

      RE: probiotics, there are very few pharmacies that carry VSL3… you might look online. You can get a doctor’s prescription for it, but it’s not necessary. I’ve exceeded my co-pay so I just asked my doc for a retroactive prescrip so I can try to submit my VSL3 expenses to insurance.

      Hope that helps!

      1. Hey Jennifer!

        Yeah I was super bummed out that I had to stop soccer, but of course I will keep exercising! Right now I am pretty bad though. Went on a run the other day and fricken soiled myself…it was pretty embarrassing. (sorry if that was too much detail- but I feel like I can be open about it on this website :) ) My parents told me to quit the running for now and just go on walks, so that is the exercise I am doing these days. It’s crazy to think I went from being a D1 athlete to now being a power-walking 20 year old. Oh well- I will take what I can get!

        I have started on the Paleo diet, since I have been receiving information on it. I know it says to eliminate all grains, but would I be able to keep eating white rice? ( I love love loveeee rice!) This diet is definitely going to be challenging- I just pray that it has some positive effect on my system!

        Thank you again for responding. Hope everything is well with you!

        1. Sarah,

          While I think the SCD diet is better than Paleo, I think that if you are going to do Paleo you have to do Paleo all the way. That means no rice. I know that you enjoy rice; we all have foods that we really like, but the question is how much do you value your health. I think that given the choice, most of us would rather give up rice than spend our days searching for a toilet. UC is unforgiving. The smallest mistakes will trip you up.

  14. Sarah, I have read every single post this morning. You are incredible the way you write back to everyone! I am so sorry about your situation with your disease—it sounds really tough! All the advice about stress, probiotics, etc., are so great on this site! I hope I can also help, by adding that quitting the soccer team sounds like a good idea…. When I read you tore your ACL, it reminded me of my biggest flare-up when I had double knee surgery in 2001 and ended up with a bowel obstruction. I was diagnosed finally, in 2001. When I was in college, I played varsity soccer and squash, and B Tennis (this was a long time ago, and hard to believe now :) A small div 3 school. Anyway, I had these bumps on my shins when I was 20, and no one knew what cause them—turns out it is a symptom of UC! Who knew? They sent me to a dermatologist. Anyway, they said I had too much stress in my life, so I basically kept on studying and partying and whatever you do in college. My symptoms came off and on over the years, and then got bad after my 3 kids were born, really bad, in fact—I had to have surgery. Has anyone talked to you about removing your colon? It is not as bad as it sounds! They have an internal J-pouch they link to, or an ostomy (which is outside your body). Anyway, I thought it might be worth getting a second opinion. I wrote this book when I was recovering from my surgery in 2006, and have been in remission ever since. I hated prednisone, but almost preferred it to the other drugs they told me to take: 6MP and Remicade. I tapered off Prednisone, and then went into remission (minus 2 feet of my large and small intestine). I work really hard at maintaining a low-stress lifestyle—and Adam’s book is an awesome way to start. It sounds like your family has done so much to help you, but what I am hearing now, is your own voice coming through! You are taking charge of your life and saying you don’t want this disease in it any more.

    I am really interested in the findings of this study…. see the link below. I had been tested (by my naturopath) for gut bacteria (poop samples sent to the Genova Diagnostics in Asheville NC), and I had a type of this E coli bacteria…. So, inflammation as a combined cause seems likely in CD. My naturopath put me on Cipro to wipe it out, then the process of rebuilding the flora and fauna…worth checking out. http://www.news.cornell.edu/stories/Aug12/Inflammation.html

    Have you ever taken Cipro or a really strong antibiotic? Hang in there, Sarah! Since I have Crohn’s disease and uc/combined, I am interested in this Olympic athlete who has Crohn’s and trains very hard: Carrie Johnson is her name and she is about your age. A very inspiring video is on YouTube about her. I can’t find the link now, but she is awesome.

    Oh, and I had another thought: Is there a mindfulness in medicine program at U Florida? There is one at UMASS that I attended, and it helped me cope with living with a chronic disease (Crohn’s disease is similar to UC but has no cure; UC can in fact be cured–removing the large colon–but Crohn’s has no known cure). I my experience, keeping a food journal, getting rid of stress in your life (you can always go back and play soccer post-college!), meditation and yoga, probiotics, an strict organic diet, no when and little dairy or as tolerated, lots of sleep, supplements like Omega 3, B-vitamins, D, extra C—get your poop and blood tested, and maybe go to a naturopath for a complete check up, would be a good place to start! Hang in there. I don’t like the sound of how it was last night—and would go to a hospital: CAT scan, colonoscopy, blood work, etc., I would use a GI who is a member of the CCFA.org, and get a second opinion along with a naturopath (my GI and surgeon worked WITH my naturopathic doc!). Take it one day at a time and try to eat protein so you don’t get anemic from blood loss. If you want to talk on the phone, you can call me, or have your parents call me—I often talk to people by phone. And, Sarah, remember, you are not alone.

    1. Hey Dede!

      First of all, thank you for reading my story and all of the comments after it- it really means alot! It is nice hearing you agree with the fact that I left my soccer team. It was an extremely difficult decision (but if it is THE toughest decision I have to make throughout my life, I guess I am quite blessed right?) and hearing the reassurance from others definitely helps this weird transition for me. I am so sorry to hear you had DOUBLE knee surgery. I only had one knee surgery and the recovery period was quite painful, I can’t even imagine having to go through two. You are a strong woman!

      I have in fact heard of the J-pouch surgery, thanks to this website! I do not however know about all of the details that go into the surgery, but I do realize it is an option. So you have had this surgery? How long ago did you have this? (if you don’t mind me asking!) Though I know it has been successful for others, I don’t think I am ready to do that type of procedure right now. I want to try and beat this thing naturally first, but if I still struggle with it for awhile…I will most likely resort to that. There is only so much UC I can handle!

      I have never taken Cipro or a strong antibiotic before. I just got tested the other day for C-diff, which I was found negative for. This weekend I am heading back home to visit with a second doctor and I believe he already has some lab tests waiting for me. (yippe, gotta love poop samples ;) ) I am actually excited about it though, maybe this second opinion will put things in a different light and can lead me on the road to recovery. Who knows!

      I will definitely have to check out this Carrie Johnson girl- her story sounds amazing and inspirational! Also, what exactly is a “mindfulness in medicine” program? I have never heard of it! (btw, I attend Miami University in Oxford, OH- many people assume it’s the one in Florida…I wish!) Seriously thank you so much for your advice and information! It means so much to me. I cannot say it enough, I am so blessed for your help! Hope all is well and to hear from you soon!

  15. Hey Sarah,
    I’m Trent, I’m 20 and just started my junior year of college, I was diagnosed about a year and half ago with crazy bad symptoms and after spending all summer trying diets and medications, like prednisone, asacol, remicade etc. I finally looking into surgery options, I went ahead with it because I had had enough of the whole UC thing. I’m not recommending it or saying you should go that route I am just saying that I went with it and I am very happy with everything. I won’t lie it was very scary and tough to get through it all, but most importantly for me was knowledge is power, I feel the more you know the more you’re in control, knowing about every option really helps.
    I hope you find something to work for you. Good Luck.

  16. Hey Sarah, Thanks for your eloquent and thoughtful reply to my comment…. You will probably have an awesome career no matter what you do! I thought Polly’s comment was awesome—with recommendations and so were all the others! When I wrote my book, the first chapter talks about me lying on the gurney at the ER with a blocked intestine, and I was so scared! I always tell people to stay on top of symptoms! I was kind of in denial for many years…I would call my doctor on Monday morning and say, “I’ve been throwing up all weekend.” To which he’d reply, “You should have gone to the ER!” I was a mom to 3 young kids, and just didn’t want to admit how sick I was! I would say you are incredibly educated about your disease, and you have a terrific support team :) (Mom & Dad, and all, with GFs, I’m sure!). ANd, But, you have this sucky disease, and there are some days when the toilet is just the only thing you see or visit (Am I right?!)…. THis summer I did the “I’m crying for my mother to help me and her idea of care taking is a trip to McDonalds and a bottle of Pinot Greeg (I kid you now!).

    So, getting things checked out this coming weekend when you go home will be great! It might be helpful to find a local naturopath—with an accredited 4 year degree. So, I get it that college is in Ohio (duh!), but when you are home you can get some more support, and another opinion. I even wonder if you should try to go into the hospital if you get sicker and just have what the call “bowel rest.” I had that in 2001, AND IT WORKED!!! For five years, I was able to live a pretty normal life, until 2006 when my flare was so bad, I had to have surgery, there was no choice. I just wasn’t getting better…. :( But, I had an awesome team (and, yes, like Trent says, I was very scared, too): I had naturopathic doctor giving me arnica and prep before surgery, GI doc giving me Prednisone before surgery, husband helping with kids, my wonderful mom came to the hospital and bought me stuff to make my room homey :) etc. I don’t want to give advice that isn’t from your doctor, but ask about bowel rest and then reintroducing foods, slowly and carefully, after. I mentioned Cipro, because there is new research linking autoimmune diseases to gut bacteria (a recent NYTimes article last week linked inflammation to autism in fact) …. when you get your stool samples back have the doctor go over it (and get results sent to a naturopath, too), and see what is what. Did you know there is more bacteria in the gut than there are human cells?

    I would add that surgery is a last resort (the surgeons of course think they are rock stars — mine was the BOMB!–) because of the risk of infection, but nowadays they are pretty advanced. I do not have an internal pouch—they just joined the sections together with stitches, if you can believe it! They thought maybe I would need an external ostomy bag, but I didn’t (I was freaked out about that but when I joined the CCFA.org and ran my first half marathon (Adam did this too and it rocks: Called Team Challenge for ccfa.org), I met tons of people with ostomies who said their lives were amazingly better!

    Hang in there… Lost to think about and doctors and tests to check. Take it day by day…one step at a time. You have tons of comments here! I was thinking today: Keep your routine totally predictable: I get up, walk my dogs, eat oatmeal (organic, pure Wessex brand irish, well-cooked, no sugar at all in my diet), do yoga and meditate, work, eat a snack (banana or hard-boiled egg), work, have lunch (simple!), drink tons of water, afternoon exercise (usually a 5 mile walk or run, cross-train with biking 10 miles up Vermont HILLS :) , then another snack (homemade hummus with carrots), dinner (rice and steamed veggies, frijoles, lowest fat cheese, greens also steamed, cranberry pure juice diluted with water. Every night, I have flax seed ground mixed with my probiotic, and I swear by this! I use Spectrum organic ground flax (keep in free er). I should just mail you my book!!! :))) The best thing is that people with Crohn’s and colitis really are forming a community—there are other forums, too, like healingwell.com, but you are off to a good start!

  17. Okay so I have some questions regarding the SCD diet. First though let me catch you up to speed on what plan I am on now…I had to come home this weekend for an appointment with a second G.I doctor in Cleveland. After meeting and talking with him, he has decided to take me off of the Entocort (thank goodness) but now has me taking a drug called Apriso? (I am taking 4 pills a day) I am still on 6-MP (now 75 mg) and the Remicade. I get my 3rd infusion on the 13th. Doctor Lashner is the doctor I am seeing, and he told me that Remicade is my best option and that he won’t give up on it until around 6 months. (if I do not see improvement that is) I am still waiting on it to kick in. Anyways, he told me that if the Remicade does not work, that is the last thing they can do- and then I will have to think about surgery :( Which that really bummed me out. I did however ask him about any diets he has heard of that he would recommend or whatever. Compared to my other doctor, it was nice to hear that Dr. Lashner actually believes there is a connection between diet and this disease…but he said that the SCD diet has been helpful to some of his patients.

    That being said, I have the book and have been reading through it. I am a little confused on some things. It says that I need to be on that “basic” diet for about 5 days….and then after that, am I able to eat whatever is in the book? Or do I have introduce those one at a time? Also I am a little nervous, I feel like this is going to be extremely hard to follow through with at school. I live in a dorm so I do not have access to a kitchen. I could probably go over to one of my teammates house- but I would have to make things for the week, and I don’t think I have enough fridge space. I am just confused and at a loss of what to do. What do any of you suggest? And those who have tried the diet, how long until you started seeing improvement? I know everyone is different, I am just curious.Hope to hear from some of you soon! Hope everyone is doing well!


    1. Sarah,

      I have been on the SCD diet for 4 months now. Perhaps I have convinced myself that I am feeling better, but I really think that this diet is working. I was having 5-6 painful BMs/day before the diet, and now I am at 2-3 BMs/day, mostly formed, and bleeding has been dramatically reduced. As an added bonus (for some people, anyway) I lost 15 pounds in these 4 months. Before you consider surgery, ask about the possible effects this will have on fertility. Now, according to the book, after the 5 days, you should be able to eat anything that is allowed. However, this way is not recommended by the SCD internet community. The reason is that just because a food is allowed on the diet does not mean your colon is healthy enough to process it. You need to introduce new foods slowly… one by one. Look at pecanbread.com. They have recommended ‘stages’ for introducing foods. You need to introduce one new food every few days and see how it affects you. This is easy to say, but very difficult to do in practice. I have been stumbling around these four months unsure of what foods cause the bad reactions. However, it is getting easier for me to tell, and I have been able to identify many foods that I can eat without problems. In the meantime, I am allowing my body to heal. The issue with not having access to a kitchen is a huge problem. You need to find a way around it, because this is your health we are talking about, and there is nothing more important. If moving home is an option, I would recommend it; it’s that important. I started seeing improvement within two weeks. Let’s be clear: very gradual improvement. Within two months I was able to wake up around 7am and my first BM was around 6pm. Take this with a grain of salt, since everyone is different, but you should definitely try. Your health is the most important thing in your life.

      1. Thank you for responding so soon. I will definitely look more into it, it seems as though you had great success with it. Hopefully I can have the same outcome. It would be tough for me to take a semester off from school and go home. It may be the best decision but once again I need to think about it. Thank you for the information- extremely helpful! Hope all is well :)


        1. Hey Sarah…I agree with KK-SCDer. You’ll want to introduce foods one at a time. The same would hold true for other diet plans you may be interested in checking out if you like fruit as I think I remember from somewhere. The plans work in different ways but the idea is the same…the body is allowed the chance to heal. The latter—the one I have not heard you mention my be easier while you are at school. I mean, if you can find the food, there is no prep you have to do that you could not do in your dorm. If you want to reach me in other places you can try hitting me up on YouTube. The name is ApacheRosePea00. Hope you are feeling somewhat better. Either way, don’t get bummed out. Despite what your doctor said, surgery is not the last option. Its just the last option for silly doctors who don’t know any better. :) Steve

  18. Hey Sarah, I am glad to hear from you, well, read your post! KK-SCDer is giving you awesome advise! You are really being thorough with your research and your questions, too. I have been giving your situation a lot of thought. Remember when you wrote about your first, or second, flare-up, and how you were throwing up and also having diarrhea at the same time? Oh, Joy, how can we forget those time?! :) But, I got to thinking about my own case, the I did have severe food poisoning in 1997, or 1998. I will never forget how sick I was, and we were staying with friends on Cape Cod (how embarrassing to have to clean the bathroom rug int he morning!!! Yikes, the stuff we have to do when we have uc/Crohn’s…). Well, my husband and I stopped at a Wendy’s I am pretty sure, and since I try to “eat healthy” (even back then), I ordered a chicken burger or some such thing, and got really really sick. I should have gone to a hospital, but we were way down at the end of the Cape… and I never followed through with a check up after b/c I had three kids under the age of ten! So, here is my question: Did your symptoms start with that awful bout you had? Do you think it was food poisoning? Sounds like you are going to do the Remicade thing, and then see if it helps—I HOPE SO! Then, work on your diet—do the best you can, it is better than nothing!—at school. Try to get lots of sleep and drink lots of water…. can you have some massage, acupuncture, gentle yoga? Sometimes when you play sports, you have access to trainers who can do massage and whirlpools and stuff—all relaxing and promoting healing. I love acupuncture, and go once a month. At some point, you can maybe get off some of the drugs and get even healthier. Anyway, just writing to check in!

    1. Hey Dede! Thank you so much for keeping up with this blog and handing out this information, not only to me, but others who may be searching for some advice/answers. Regarding your question, when I had my awful bout, I was having symptoms before that. It is hard for me to remember exactly how I was feeling (as in cramping and things of that nature) but I do remember I had lots of diarrhea for awhile before then. So I do not know if it could have been food poisoning or not, but it is an interesting thought! I am so sorry you had to go through that misery, I can definitely relate! (The beauty of this website- not feeling so alone! Having accidents on carpets/rugs is totally normal!!) But actually, something has happened quite recently that has been a huge shock. Read my next post please! I am curious to see what you think!


  19. Monday, throughout the day but especially at night, I had been feeling super weird. As I mentioned earlier, I had been having a terrible flare up again (with blood, urgency, accidents, you know- the works). Anyways, Monday I didn’t really eat that much and surprisingly didn’t go to the bathroom at all that day! (Besides my constant waking up throughout the night to relieve myself) It was insane, I hadn’t had a day where I didn’t run to the bathroom in forever- so I thought it was extremely odd. So I drove back to school (zero stops- say what!?) I finally grabbed something to eat- it was something that was considered legal on the paleoithic diet. I hadn’t had time to make anything from the SCD. Anyways…so I took some bites and started feeling extremely weird. Once again, I had not eaten all day so you would think I would be ravenous- but after a couple bites I felt extremely full and just gross. I stopped eating and kinda sat there for awhile, and then this odd cramping/full feeling started to become overwhelming. After awhile I just thought I would head to bed and maybe sleep it off.

    Throughout the night I was miserable, I kept waking up and having to go to the bathroom. Surprisingly though, there was zero blood- so I was happy about that. The cramping/full feeling though was getting worse. I kept touching my abdomen and it was extremely sore, so I was assuming it was just another bad flare, but then there was this constant throbbing on my left side rib-abdomen area, and then some pain in my back. I thought it was odd and I just felt extremely sick. I was super nauseous but I never ended up puking which was good. After lying awake for 3 hours, I decided to call my parents at around 3:30 in the morning. (Thankfully they had been at my Aunt’s- only 45 minutes away). Usually I would think going to the hospital would be a dramatic move, but something just felt off and I decided to go with my gut (no pun intended). So around 4:30 in the morning I checked into the Emergency room.

    The results were interesting. I have been diagnosed with pancreatitis…say whatttt!? I had no idea what that even was. Apparently it can be a rare side effect from the medication 6-MP. Interestingly enough, my G.I doctor had recently (this past saturday) bumped me back up to 75 mg even though I had wanted to go back down to 50. So I am currently typing this post in my hospital gown and bed. I am back to putting my stool’s in those things called “hats” and ohhhh the joys of UC plus the lovely bonus of pancreatitis! The doctors are making me “fast” for 2 days and I am so hungry!!! I don’t know why but I am really craving a cheeseburger, though I couldn’t even eat that anyways. Oh well- a girl can dream right? Just thought I’d post this- cause I was curious to see if this had ever happened to anyone on here. The doctors have decided to stop my use of 6-MP…duh! I just want to get this sorted out DRUG FREE so this won’t happen again, but we shall see. Hopefully I will be out of this hospital soon. Hope everyone is doing well!

    1. Hey Sarah!

      I’m sorry to hear that you’re in the hospital, but I’m glad that you followed your gut! :)

      I wish you a speedy recovery… all the best, lots of hugs,

  20. Hey Sarah…I’ve been missing in action for a bit. I had quite a bit written for you way back but Adam informed me long messages get caught in the spam folder…lol…and yes, I’m detail oriented too so no worries. I really should catch up with you and see what directions you have decided to go. I’ve had promising news with some stuff—in just a few days which is kinda blowing my mind—but I don’t want to jinx anything. Check out my story if you like…A Long Road It Has Been.

    I’ve had similar feelings to the ones you are now…soreness/constant abdominal pain different that was more serious than the typical feelings we feel, awkward feelings of fullness even though I have eaten nothing, throwing up, etc. However, mine was not from any drugs. I am guessing it was a partial blockage because once it disappeared it never came back. I hope you are getting off all the drugs if not right now, definitely soon. I think you’ll feel tons better! Hope to hear from you soon. Steve

  21. opps sarah,i wrote to very long msg but iguess not publish,i msged u evrythg fr d time i get uc at 14 n daignose at 16 n now m 34 yrs still goin strong,never giv up.i hv done n vl do what i feel like whn i get remission it flareup evry two,three yrs.now m changing m career into yoga n fitness as instructor but cant evn go fo m classes right now i gt flareup m sister insist i go n rest in hospital before i gt too weak,but d doc said u vl be okay but nxt time dont stop ur medicine.see i had flareup whn i was in intensive care whn blood jus ooz out wtout pressure n was given remicad.dear sarah be wt positve pple,read inspiring biography n relax n dont think too much of ur uc,drink yoghurt 30% 70%water,pinch of salt n honey mix it coz during flareup evrythg we eat we cant digest,tk turmeric powder wt lukewarm water,drink feegrunee,lemongrass tea,drink coconut juice if u gt d pure one,whey milk,cook any fruit or vegg u eat avoid acidic food pomegranate juice its a good anticaptic.i eat rice well done n soft i eat toast bread,avoid wheat n pur flour.no chicken or non veg as of now once u alright il tell u d followup diet but realy evrythg in small meal 4 times a day drink glass of water evry two hours.i know diet n excercise is important but whn m free fo smtime wtout any complain i necglect to eat n do right thgs,dont gt stress,excercise do yoga, dont do excercise whr u hv to jump or weight during flareup jus do meditation not useing strenght coz at nite i visit d bathroom more th day time so safe ur energy:-)findme on facebook.kawlnithangi colney,mumbai

  22. u in d hospital?k get well soon wat is 6-mp? wat i wrote to u is just a follow up. .if doc kp u fasting but i hope u get iv of saline n all d vitamins required, whn i was in icu in 2006 m hb was 6only so i guess it is gud to kp it high m also still bleedn but bit lesser today i jus started m medicine msalemine,n providac on monday and yesterday 6th wednesday idid endoscopy n m doc gav me three more wt vitamins imagine poping five diffrent pills a day but i guess m getting better as bleedn bit lesser,its very unpridictable problem but hope n pray u also get well as i recover n by monday i plan to go bk to attend m yoga classes:-)

  23. Pancreatitis???

    Holy hell…those awful drugs. This is why I refuse to take any of them any more.

    I’m so so sorry, Sarah. You are far too sweet for this to be occurring…geez…

    I’m with everyone else…I wish you a very very very speedy recovery. I am guessing, and HOPING, that you will not be taking any more 6mp???


    1. haha. Well, I don’t want to have it be anti-climatic later so I’ll share now. In the last few weeks, my acne has flared up again after I nearly had it beat…suggesting the bacteria balances are off in my body. It has been a stressful time. So along with starting the L-glutamine, I picked up your probiotic as well. Seriously, I just started two days ago but I’m already seeing differences. I’m talking little to no bloating, greatly lessened urgency, less of the I gotta go dance, etc. And this is while eating what I would otherwise consider trash for food(at our next “small” reunion—we’re apparently having two every year now—I intend to show people good food can be healthy). Last night alone, I purposely ate badly to see how I would feel. Normally, I’d feel like crap within the hour and be focused on any changes down there. I honestly felt none of those changes. No discomfort whatsoever. I’m excited to see what is to come with what I know as healthy foods and exercise. Probably silly to you but I am floored by last night and I know it will only get better.

      So a question for you(or anyone really). I was thinking of documenting my entire healing process and sharing it on YouTube. I only have my phone to do it with but would people really watch that? I’m not talking the usual this is how I healed stuff after the fact. I’m talking a full transformation from as I am now all the way through. I already have workouts laid out and would share that plus what I am eating…including weight, body measurements, etc. Just curious what others think!

      1. Whoooooopeeeee Steve!!

        My probiotic? Really?! The ULTIMATEFLORA CRITICALCARE by RENEWLIFE?

        I know exactly what you mean by the statement that you made of how you were floored! It only took me a day or two to actually feel a difference too! I thought I was just getting a placebo effect, or that I wanted it to work so badly, that I imagined it…but, no…it really was working! I wonder what is so good in that probiotic anyway? After a month, I just felt ‘normal’ again.

        Just like you, I had no bloating, and I can also eat anything that I want now, with NO bad effects whatsoever. Broccoli and almonds were really bothering me (painful gas, etc) before I took that probiotic, but not any more. I can eat a ton of either, or anything else for that matter, if I choose to, and nothing bad occurs at all.

        I truly could not be happier for you, Steve, if I met all of the Beatles (assuming they were all still alive) in person! And I am the ultimate George Harrison and John Lennon freak…lol…

        This is really the best possible outcome and news. I too was walking on eggshells for quite awhile, thinking my symptoms would all return…but they have not!! I feel totally normal, like I don’t even have this ‘ulcerative colitis’. I kid you not!

        I do believe I shall skip around for the rest of the week, now!!!

        A very very pleased and elated friend,

        On, BTW…If you were to post anything on youtube…YES YES YES, we would all love to watch it! I know that for a fact!! Please consider doing it…and let us know when you do….please?!

          1. I don’t believe it is KK-SCDer…as it contains strains in the bifido family(three strains) which if I remember correctly are not cool on SCD. There are ten strains total with the rest being in the lacto family. I am working on SCD as well but I can honestly say I will continue to use this if I see results(balance in the gut is the key after all). There is no yeast, wheat, gluten, sait, soy, dairy, binders, fillers, or artificial ingredients—taken right from the bottle. The only other ingredients are vegetable fiber and water.

            I picked it up at my local Rite-Aid and it should be kept in the fridge once you get it home. I kept my receipt and everything too, that way if I didn’t see results I could return it(in case it was exposed to too high of a temp before I picked it up. Hope this helps! :)

            I was feeling rather peppy so I went(I didn’t mention above that my energy levels feel up)and removed a tree I’ve been aiming to get out. Quite a work out but fun with a Fiskar’s axe. And my mom suggested a chainsaw. Ha! All the while, my mind didn’t go to my stomach once!!

  24. Talk about timing…when my answer is moderated it will show up. haha. If that takes a while the short answer is no I don’t think it is SCD compliant. Don’t let it stop you from trying it, especially if you take a lesser powerful probiotic and think it may help.

  25. SARAH….bummer about this update! I am glad you are off the 6MP. What is the scope showing? When you can, update us! I, too, felt strange when I had my obstruction, which is why they should give you a CAT scan.

    Perhaps they should supplement or give you something to help your cravings. I am standing by, checking, to make sure you are making improvements.

    Are you on antibiotics for the pancreatitis?

    What hospital are you in? In Ohio? Make sure the doctors are getting all the answers. If need be, get to Cleveland Clinic or Mayo. Don’t wait for an instant on diagnosis and treatment. Thinking and praying for you! I almost feel like I should come out. I can run results by my GI iif you, or your parents want.

    1. Hey Dede!!

      I am so sorry I have not written an update or have checked in at all, things have been a little hectic! I was in the hospital for about 4 days and was finally let out on the 8th. They completely stopped all of my medicine while I was in the hospital (thank goodness) and they did not give me anything for the pancreatitis besides rest, fasting, and pumping me with IV fluid.

      According to my doctor, I am taking pentasa (2 pills, 3 times a day) and then getting the Remicade infusions. My third infusion was September 13th and my next one is scheduled for October 26th. I haven’t been taking the pentasa because when I finally started taking it, I saw blood again in my stool (which I hadn’t see for a couple days) so I figured it was due to that medication and I stopped it. I have been taking my probiotics (RAW for women) at first 3 pills a day…but now I have bumped it up to 6 pills a day. I am also taking a natural anti-inflammatory and then L-Glutamine mixed with grape juice. I have been feeling much better, compared to where I was at. The pancreatitis pain is completely gone, thank goodness, but I still am having issues with the colitis.

      I still go probably 5-7 times a day and then I usually get up at least 2-3 times throughout the night, but like I said- this is improvement compared to where I was at. I just feel like my body was so messed up from the 6-MP and pancreatitis, so I am super happy that I am off that medication. I actually started taking some over the counter anti-diarreha to see if I could sleep through the night and they have been working really well!

      At my doctors appointment yesterday (w/ my G.I doc) he wasn’t pleased with the amount of times I was going and wanted me to start taking prednisone. I refused though, so he wanted me to start up entocort and the pentasa…but I am not gonna take them. From all the research and comments given to me, I know this is only going to be healed through natural methods- whether it be probiotics, or maintaining a strict/healthy diet. I didn’t even bother telling my doctor that though, seeing as how he really does not think it is diet. I cannot wait to prove him wrong :)

      Thanks again for checking in. I guess overall I am doing alot better but I still have a bunch of issues. (running to the bathroom alot and cramping) but honestly I have seen improvement and that gives me hope. I know this is going to take awhile to heal so I will just be patient. Once again, thank you for checking up on me. I hope everything is well with you!


      1. Hi Sarah…

        You say you are taking an over the counter anti-diahreal. What is it, if you don’t mind me asking you?

        I was told by my gastro NEVER to take anything like that (immodium, etc) when you have UC, as you may get the dreaded toxic mega colon. Not something you want to get, trust me!

        Just a heads up!


  26. Hey guys!!

    So I know I have been M.I.A for awhile…I hope that everyone is happy and well! Currently I am okay, definitely no where near where I want to be. I am still on Remicade (3 infusions so far, next one is on October. 26th–still have felt NO EFFECTS!) That being said, thankfully, remicade is the only medicine I am currently on. No more 6-MP after that last hospital visit. Blah.

    Anyways, so I have a quick question for those of you who are on the SCD. I decided, especially after I was put in the hospital because of meds, that I needed to attack this naturally. I have been on the SCD for 2 weeks now, and though extremely minor, I have seen improvements. I have been able to pass gas from time to time, which I haven’t been able to do so in forever! Also, when I get urges- I am able to hold them off for a little while longer then normal. I still am going at least 7-8 times a day and most of my BM’s are unformed, urgent, and extremely watery. (I know this is gross- but my area down there is SO SORE from all the bathroom runs…I have ointment but any advice in that regard?)

    So I guess my question is (for those on the SCD or have tried SCD) is this normal? Obviously I know this diet isn’t going to heal me instantly and it is going to take time…but I was just curious as to when you started to see less BM’s a day…and when those BM’s were formed? (I know everyone is different, but I am just trying to get an idea). I am following the recipes within the diet and I am just wondering if there are certain items within the diet that I should avoid, at least for the first couple weeks I am on this? Did anyone else still have a ton of urgency/BM’s a day when starting out? Any advice would be helpful so please please leave comments!!

    Also, while on this diet…I am taking the following things:
    1) Raw Women Probiotics (Garden of Life)…I am taking 6 capsules a day (2 morning, 2 mid-day, 2 before bed) There is also a liquid form of probiotics that I am taking – 1 tablespoon a day
    2) Aloe Vera juice a total of 8 oz. a day…in 2 oz. increments, so 4 separate drinks a day
    3) Astaxanthin- 1 w/ breakfast and 1 w/ dinner
    4) L-Glutamine (1 tsp. a day) – usually mix it with all natural grape juice
    5) Drinking green tea w/ honey & cinnamon

    Once again, thank you for reading this (if anyone is) and please please feel free to leave comments- the help would be amazing! Thank you so much! Hope everyone is doing well!!


    1. Hi Sarah,

      You are totally correct about the “everyone’s different” part. That makes it difficult to easily suggest what’s going to happen next and when, but its great that you are at least seeing/feeling some improvement.

      One thing that I would recommend to stay away from until you have some good healing is almond flour and all the baked goods you can create with that stuff. I can remember getting carried away with that while I still had noticeable symptoms and it was a mistake, and one which many people who are starting the SCD diet make. Almond flour is something that many people enjoy, but it is often considered to be a more “advanced” food for people following the SCD diet. So, if you’re using that alot, I’d pull it off the menu until you’re feeling much better and then introduce it slowly.

      Also, I myself have never taken any Aloe or Aloe related products to help with my UC. There is a link here from the Breaking the Vicious Cycle website which might be helpful to you:


      That link talks about Aloe and why it is not allowed on with SCD.

      I wish you the best, and keep us posted on how things go for you.


      1. Adam,

        Thank you so much for the advice. I’ve been keeping a food journal/BM journal and my parents and I both thought that maybe the almond flour had something to do with it- so I will definitely stay away from that for awhile. I have used that website before and I saw that the aloe vera was illegal, but I have read some positive things regarding aloe and ulcerative colitis. Maybe I should stay away from that for awhile as well though. And I will definitely check out that group on yahoo! Thank you so much for the advice, I am extremely grateful!


      2. Interesting… aloe has gotten some terrific press. In this study, 47% of participants taking aloe saw a decrease in UC symptoms vs. only 14% taking a placebo. http://www.bastyrcenter.org/content/view/694/

        Although it’s probably a good move to follow a minimal diet with nothing questionable until there’s more noticeable improvement. It’s hard to pinpoint what the problem foods are until you’ve stripped everything out and then gradually introduce one thing at a time to see how it affects you.

        1. Totally agree Jennifer, its really hard to pinpoint things, and what you suggested is a great idea on how to do it!

          And on top of it all, our guts and insides are always changing, always different from one another, and geeze, if that wasn’t enough moving variables…I don’t know what is right:) Best of luck to you all! And if you’re having good luck with Aloe, rock on!

        2. Jennifer,

          Thank you so much for the advice! Definitely take it into consideration throughout this healing process!! Hope all is well with you!


    2. Hi Sarah,

      Glad to hear you are seeing some improvement with SCD. I’ve been on it for 5 months, and my BMs are about 90% formed (of course, my symptoms were weird in that they were about 50% formed pre-SCD, so I don’t know if I’m a good example). I agree with Adam — take it easy on the baked stuff, and also I would suggest to tread lightly with dairy and fruits. Those are risky, and occasionally you will react to them a few days later, so it will be confusing what you ate that caused a bad reaction. I’m still not certain whether my improvement is due to my eating SCD or, the fact that I am eating significantly less (I’ve lost about 30 lbs in 5 months). I still have a TON of urgency, even though I am only going 2-3 times a day. My bleeding alternatively increasing then disappears, so I think I’m on the right track there. So, as you can see, even in 5 months, your symptoms will still be significant. “When” questions are very difficult to answer. It’s not like one day your BMs are liquid and the next they are formed. It happens slowly, and I didn’t really notice when that happened. The important thing is to stick with it and look at the big picture. Also, you should join the BTVC-SCD yahoo group. There are a LOT of knowledgeable people there, and they will answer many of the questions you have. Good luck!

      1. Thank you for responding so quickly! I am glad to hear that your symptoms are at least a bit better- definitely gives me hope that this diet may actually work. I just have a couple questions…when you say dairy- do you include all of the legal cheeses? Prior to the SCD I was dairy free, but when I found out I could have cheese again, I was beyond excited. Obviously I will eliminate it if it is causing more harm than good, but just double-checking. And the homemade yoghurt- is that still okay? Also, fruit is a go-to snack…is it okay if I have it in a smoothie form so it isn’t as rough digesting or no? Is there a supplement I can take that could help with fruit by chance? I just feel like I won’t be getting the right amount of nutrition. Also, one last question, I read the post you wrote that is on the home page…you mentioned something about a smoothie? I was just wondering what the ingredients were for that, because I am looking for a snack- since that is what I struggle with most. Thanks again for getting back to me and sorry for all of the questions!!


        1. Hi Sarah! When I say dairy, I do mean the cheeses and the yogurt. The thing is, a bad reaction to food is not always obvious. Yes, sometimes I’ll eat something new and immediately get D. Then I know that this is not something I should be eating. However, I’ve found that sometimes the negative reaction is simply the lack of improvement. For instance, I was eating about 5 of the almond flour muffins a day. I was feeling pretty good; my symptoms were not getting worse, but they also weren’t getting better. I tried not eating the muffins, and I some improvements within a few days. Dairy and fruit is like that. Now, if you are able to eat it and tolerate it, then thats great! You definitely should continue! But later on, maybe in a few weeks or months, see what happens if you take those things out of your diet. Just a suggestion. Fruit should definitely not be eaten raw this early. You need to peel, deseed and cook it well. I like to make some baked apples that I turn into apple sauce. Cooking gets rid of a lot of the fiber. The smoothie that I make is very simple. 1/2 cup of yogurt, 2 ripe bananas, and a tablespoon of honey. Put this in a blender with a handful of ice (play around with the quantity — it depends on how thick you like it) and there you go. Later on you can play around with adding other fruits that you tolerate. Best of luck to you! As I mentioned, you should definitely try dairy and fruit if it works for you, but also experiment with taking it out of your diet for a few days to see if that helps.

          1. Once again, thank you for responding so quickly- I really do appreciate it! Your advice is so helpful! I will definitely keep these things in mind as I continue with the diet. Hope all is well- and hopefully in a couple months I can report back saying how much better I am doing!


  27. Hi Sarah,
    I’ve been following your story since the beginning and am glad things are going OK. Guess I thought I had wriiten to you, but I guess not. Think it was when you went back in w/pancreatitis.
    I think you have tons of great info especially with the journal added in. My only other advice would be to think about one of those natural remedies can actually be causing the loose bm’s…NOT THE PROBIOTIC, though. I have read a ton on most those and ironically they can cause some of those side effects they are trying to fix just like traditional meds. You may want to try and remove 1 at a time or just try 1 at a time and you may find the culprit. It is important to try and be as systematic as possible. Also understanding soluble and insoluble fiber. It seems you are back on the road to healing!
    Wishing you the best and hope this helps…from a fellow former soccer player-div 2! Shelly

  28. Hi Sarah,

    I just read your story after searching for people with UC that have also torn their ACL. I just started my freshman year at Marquette University and am a scholarship lacrosse player. Of some of the comments I read I may be most similar to you. I started the Remicade in Junior and tore my ACL and meniscus in February. I also had a hip surgery October 2013 and November 2012. I was diagnosed in February 2013 with Ulcerative Colitis. I have tried the following: Endocort, Pentasa, Prednisone, 6 MP, Lialda, Remicade, diet change (gluten free still), probiotics. I am currently considering a medication change so I know where you are at. I have had 3 GI doctors. My new one out in Milwaukee thinks that though I am better from the Remicade I am not well controlled and therefore am seeking out new options: Humira. Being in sports it is really inconvenient to sit in an infusion chair for 3 hours during the week and this i can do anytime every two weeks on my own. I am trying to decide now what to do but I thought I would share that I really really understand how hard it is. Only thing I would say is that 6 mp and Remicade could potentially be overkill with the immunosuppressants. I was sick all the time on both because my immune system was shot. Also, there will be a million different people suggesting what’s best for you. But as the actual patient I am sure you can understand sometimes it is hard to just say that isn’t working or if you know for sure that something is making you worse. Trust your gut. Also I have tried probiotics and they made me sicker but I eat activia 1-2 times a day and I really notice a difference. I don’t know if it will help you but it also tastes good and isn’t a pill :) I hope you feel better and find a good solution soon!

    1. Thank you so much Jordan! Since my initial post, I have graduated Miami and actually had to walk away from soccer my junior year. I ended up in the hospital due to Pancreatitis (side effect from 6-MP). After that last hospital stay, we wanted to try natural solutions. Been doing that for the past 1.5 years but recently I had a terrible flare. Horrible stomach pains, constant diarrhea, couldn’t eat…I’m sure you understand all of this. So as I am writing this post, I actually am in the hospital bed (again). Haha this damn disease. They did a CT scan and apparently my inflammation has spread up into my ileum, so they think I have Crohns instead of Colitis now. Yippe! Though I am not a fan of drugs and hope one day I can find a solution that is not drug-dependent (I hate all of the possible side effects) I am currently on IV steroids. But I told the docs I refuse to be on them long term. We will see what their plan of care is. Regarding diet…I have maintained a gluten-dairy-sugar-free diet for about 1.5 years now. Clearly it hasn’t helped immensely (given current circumstances) but if I eat dairy, I’m a goner. I’m on probiotics as well. Thank you for the Activis tip, tho I tend to stay away from dairy :) I hope all is well/better with you and you’ll be able to stay on the field and play the sport you love! We will all find a way to beat this thing, I know it. Have a great rest of the day!

  29. Hi Sarah,
    I just read your story and can totally relate to your symptoms. I was diagnosed with UC in June last year.
    I had gone the orthodox medicine route and was given Prednisone, which made things worse, after the Asacol/Lialda didn’t work. Then I was put on Uceris, which was better of the worse.
    Hopeless and with nothing to loose I gave Homeopathy a try and it worked. I have been off my medications for 2 months now and recovering by the day. If you feel like discussing this in detail please drop me an email.
    I hope you will get well soon.

    1. Hey Vaibhav,
      Thank you so much for responding to my post, it means a lot. I am sorry that you have suffered the same symptoms I have, UC sucks! I am so happy that homeopathy worked for you- that is amazing! My homeopathic doctor wanted me to try homeopathy but I was a little gun-shy about the entire thing. I guess after so many failed attempts at “natural healing” and healing with conventional medicine, I have grown weary to things ACTUALLY working….if that even makes sense haha. I would really like to chat more with you about homeopathy, because I have been debating whether to do it. Thank you again for commenting and reaching out, it means so much. What e-mail should I contact you at?

  30. Sarah, I have UC. Tried many medications from the gastroenterologist, none really seemed to help. About two years ago I heard “Terry Naturally’s” on the radio talk about the natural healing properties of curcumin (from an Indian plant containing turmeric – where the “yellow” comes from in mustard). A woman at work was also taking curcumin which reduced inflammation in her joints (arthritis) and told me about it too. I’ve been taking the product called Cura-Med which is designed to allow the bloodstream to absorb much of the curcumin (curcumin is not naturally absorbed into the bloodstream and to do so must be combined with a pepper or enzyme or something that does absorb into the bloodstream). CuraMed has 95% absorption. It reduces inflammation throughout the body. Since I have been taking it (1 gel tab in the morning and one at night, each tab is .375 mg), my symptoms have virtually all gone away – about 95% gone. I discontinued taking any other medications my doctor used to prescribe – I just take the Curcumin twice/day. Don’t know if this will help you and your condition, but you may want to research it if you have not tried it yet. Also, Boswilla from another plant in India helps with disorders like UC. I hope for all the best for you. ……….Mark

    1. Hey Mark!

      Sorry it has taken so long to respond to this. I really appreciate your input and advice, it means a lot. I am working with a holistic nutritionist right now and I mentioned this product to her. She said she would look into it, but sounds like it would be a great fit. I cannot wait to try it! Do you typically purchase the CuraMed off of Amazon? Or where is a good place to get this supplement? Thank you once again for taking the time to make a suggestion, it is very kind of you. I am glad to hear your symptoms are pretty much resolved! I hope all is going well with you.


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