Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

9 Years of UC, SCD Not Working (yet..!)

Introduction:

I’m 22 and I’ve had UC for 9 lovely years. Was diagnosed at 13, which of course helped me through my already awkward, mid-puberty stage.. How can trying to hide toilets full of blood, diarrhea 20x/day, zero energy to do anything with friends, losing a lot of weight which wasn’t there to lose in the first place (had a librarian thinking I was anorexic.. constantly asked if I had eaten breakfast and offered to talk to me about my “problem”), and fun mid-class accidents not help me fit in easier?! I mean having an accident even now, when I know what’s wrong and I’ve got my depends on/spare depends in my bag, is hard enough, but when I’ve got no idea what’s happening, no one to talk to, and no ‘supplies’? Horrible!

Anyways got it under control and it was smooth sailing for about 5-6 year.. but the last 3 years have been horrible with year long flares, meds, hospitals, and a bunch of natural healing modalities to try and control my disease.

Some more about me:

I’m very active when I’m not sick. Play rugby and soccer, and go to the gym. Of course, being sick makes you miss out on a lot and I’ve had to miss entire university rugby seasons, as well as trips to Las Vegas and the Bahamas to play rugby.

Symptoms:

Currently I’m having D 10+ times/day with blood off and on.. sometimes none, sometimes an entire toilet bowl full. Terrible urgency and some accidents (only about twice/week… in my last flare it was 1-2X/day so I’m grateful for that!). Also having awful joint pain which hasn’t happened since I was first diagnosed: hips, then shoulder, and now both my wrists/hands, and I can feel it coming on in my knee!

9 Years of UC

My family/boyfriend have been so supportive, I honestly couldn’t have asked for more. For the first 6 years of my diagnoses I felt great. However, for the last three years it’s been a battle. I’d say my breaking point came two years ago. I was 20 years old, in the hospital with pancolitis for prednisone and iron infusions, already on salofalk and imuran. My doctor’s residents came in and essentially told me “you can no longer be maintained on Salofalk, your body seems to be becoming steroid resistant, and your white blood cell count is too low for you to continue on imuran.” I asked him about my options and he said “We can put you on a (I quote) ‘last chance medication’ Remicade.” And if that doesn’t work, I asked him fearfully? “We’ll have to remove your colon.”

Although it ended up ‘working out’ in that instance and I didn’t need Remicade or surgery, I will never forget thinking “I’m only 20. I could have 70 years left to live with this disease. If things are already stopping working for me now, there’s no way I’ll be able to live happy and healthy on medication for 70 more years. I have to do something”

I was done being a 20 year old girl who wore diapers every day, and EXPECTED to have an accident daily. I hated packing my survival kit of two extra diapers, some wet wipes, and plastic bags every morning (only to have to go home early anyways because I’d have so many accidents my diapers would be used up!).

I recently discovered the SCD and jumped right in (with the amazing help of my boyfriend who’s doing it with me just for support, and my mom, Nana, and Grandma who are making me soup and yogurt and everything else needed). I am currently on day 12. For the first 4 days I did the intro diet, but felt no better, so after that I have cut out all dairy and eggs. Now on day 10 I’m eating broiled fish, broiled lean meats, chicken soup, pureed carrot, pureed pearsauce, and about to introduce very ripe bananas. I’ve also been drinking 50/50 water and welches grape juice, but limiting to about once a day. And if I’m struggling I might just eat a teaspoon of honey because I am having serious sugar withdrawal (chocoholic!!).

My symptoms now are the same as when I started, expect I’ve only been getting up about twice a night instead of three or four times.. though last night it was 5 times! And there’s definitely more blood than when I started. I’m not taking any meds or supplements (was on homeopathic supplements before but now I can’t figure out whether they’d be legal, so I just stopped).

Questions:
George’s ‘Always Active’ Aloe Vera: does anyone know if it’s legal? It’s very different from other Aloe vera’s, it says they “remove the chemical antagonists such as the aloins and Anthraquinone that are mildly toxic” and “breakdown the mucopolysaccharide chain extracting the sugars in order to eliminate adding any preservatives and increase shelf life.” Since I stopped taking it to go on SCD I’ve noticed a large increase in bleeding so I’d really love to start taking it again!

Has anyone had experiences where they’ve felt no difference after 5 days on the intro diet and then 7 day slow reintroduction (also cutting out eggs and dairy)? And perhaps eventually started feeling better and now feel wonderful…? Maybe just wishful thinking, but I need some “Don’t give up, the same thing happened to me and it gets better..” type encouragement!

I know 9 years of UC will not be cured in 12 days! However I am hoping to see some positive changes, just wondering when I should start seeing some…

Medications and Colitis Diets I’ve Tried:

I’ve been on Prednisone, Salofalk, and Imuran, but I’m currently not taking anything.. I maybe should be doing this with the help of medication, but after 9 years I’m tired of putting that junk in me!

I have tried many things: craniosacral therapy, reiki, bodytalk, visceral manipulation, acupuncture, homeopathy, gluten free, Jini Patel’s ‘Listen to your Gut’ elemental diet and remedies.. Here’s my thoughts on what’s been the most helpful:

Georges ‘Always Active’ Aloe Vera Juice: has always kept my bleeding under control. In my last flare, I started taking it after about 3 months of toilet bowls completely filled with blood. Was on no meds, and the bleeding was completely gone in about a month.

Visceral manipulation: I go to a wonderful licensed chiropractor for this. When I first started going, she could barely touch my stomach, it hurt so much. Within a few months I felt no pain during treatment. My stomach aches were also completely gone! This was great… except for the fact that I now had almost no warning when I needed to go the washroom because my stomach felt great!

Jini’s elemental diet: I don’t believe I gave this a true chance.. I only did it for 2 weeks. As Jini says, you should do it for six, and most importantly you shouldn’t do it when you need to work/go to school. Well I started it during September as I attempted my first semester of nursing school, so six weeks just wasn’t reasonable. I did feel better, but as you’re drinking only liquid, that’s all that’s coming out the other end (without warning) so you truly do need to have a break from any life demands during this time.

written by Chase




12 Responses to 9 Years of UC, SCD Not Working (yet..!)

  1. KK-SCDer March 21, 2013 at 7:40 am #

    Chase,

    Under no circumstances should you give up! As you said, SCD cannot heal 9 years worth of damage in two weeks. To be quite frank, it can’t do it in two years either. However, you will continue to get better, slowly but surely. I am a huge believer in SCD. I was diagnosed with UC 8 years ago, but have probably had something for more like 20. I started SCD 10 months ago. I didn’t see very many changes in the first month. I noticed that the abdominal pain I had every morning had decreased, but not really much else. Three or so months in, the abdominal pain was completely gone, but I was still having lots of problems. 10 months in, still no abdominal pain, formed stools, and only occasional bleeding. My main symptom was, and still is, tenesmus, but I can definitely see the light at the end of the tunnel. A lot of people try SCD for 3-6 months then give up claiming they see no results. That’s not how SCD works. Depending on your condition, you may not see results for that long. The good news is that there are support groups on the internet. Join the BTVC-SCD yahoo group and the SCD facebook group. There are lots of experienced SCDers who can give you advice on things to try. If you stick with SCD, you will see results. But remember that SCD will not work quickly. Your body is damaged and it takes a LONG time to heal.
    Best of luck to you, and good health!
    P.S. Aloe vera is not legal.

  2. MikeL March 21, 2013 at 12:15 pm #

    Hey Chase,

    What did you do back then to get into the smooth sailing phase?

    This is not pointed to you or any other particular visitor on this site, but sometimes when I read the stories here I wonder why people aren’t in the hospital. I completely understand wanting to avoid hospitals, meds and backwards thinking doctors – I’m just like that myself. But for me personally I’d set a limit for how long I can go without traditional medicine.

    The approach I have is that when I get a flare, I need to stop it before it gets in my head (which happens way too quickly). I’m willing to add medication such as Entocort or Budenosid for a short period of time just to get the bleeding to stop.

    And then for the long run I try to find a way to eliminate the flares. I have recently started a SCD/Paleo test, I take supplements such as L-Glutamine and Cod liver oil (omega 3) and I’ve been on probiotics for many years. Every evening I document what I ate, what I drank (coffee, I’m looking at you!), how I felt, how much sleep I had the night before and how many times I went to the bathroom and if there was any urgency involved. If there’s a pattern, I’m going to find it. (My preliminary results say I need to sleep more and be careful with that fried chicken)

    But when I start bleeding, I try to get it to stop, no matter what.
    When I first got UC 15 years ago it took a long time for me to get back on my feet. About eight months in I called my hospital doctor and told him I’m coming in, and I’m staying for a few nights. I got hooked up to an IV and didn’t eat for a day or two. And a few days later I was back on the soccer field (and scored some pretty cool goals, if I may say so myself ;) )

    I realize I’m fortunate to live in a country where the medical system allows you to do things like that without having to pay for it yourself. But I seriously wonder how the hell doctors can let people leave when they bleed so much. I also realize there’s only so much you can try when the meds don’t work, but in the hospital you can get your nutrition directly into the blood stream and let the colon rest for a few days. I went 17 days without food (in the hospital) and with only very little to drink… It drove me nuts, all I could think about was food. But that (and cutting out the Asacol (Mesalazine)) enabled me to cancel my surgery appointment…

    All right, enough with the rant and back to your case.

    Have you checked that you don’t have C-Diff or some other bacteria? Your symptoms sound extremely aggressive, even for UC.

    Regarding diet – I started seeing results from my diet after about 3 weeks. When I added L-Glutamine I saw major improvements, but I can’t say if that was just happenstance, will need to test more.

    Hang in there!
    MikeL

  3. Angela March 21, 2013 at 7:15 pm #

    Hi Chase!

    I have to agree with both KK-SCDer and MikeL. Two weeks isn’t enough time for you to really see if the diet works yet and I agree with Mike that sometimes you just have to go back to the doctor. The longer your disease is “active” and damaging your intestine the greater risks for more complications (i.e. colon cancer). I have a very similar story to yours diagnosed at the same age (24 now), became prednisone dependent (so can’t really go back on it) and 6-mp and methotrexate didn’t work. So I went on remicade. Been on it for 9 years and it’s been amazing for me. As far as the diet, I’m not a fan of eliminating whole food groups (its just not healthy! especially for people who are active like us!)Your brain actually primarily uses carbs to function properly. An anyways people having been eating meat, breads, and cheese all the way back to the B.C.E! What I think our real culprits are are all this new crap we put into our foods…preservatives, food colorings, artificial growth hormones, highly refined sugars and carbs, antibiotics! Those are what I’ve eliminated and its really helped me. I can’t eat a single canned soup anymore without having serious gastro issues with it. I make a lot of things homemade and buy whole wheat flour, sugar in the raw or more often honey. Also, look into what has strong clinical studies at causing gastro problems (like the chemicals in pops), artificial food colorings, and NSAID pain relievers (aleve, aspirin, and advil). Make sure you take probiotics (except if you go on remicade as you have to be careful) and a multivitamin. You’ll get through this! Remember everything takes time and you have to stick with it!

    Good luck!

    Angela

  4. Colleen March 21, 2013 at 7:23 pm #

    Hi Chase,

    I’m with KK-SCDer, the diet works, but it’s been a long process for me as well. You’ll read stories of people whose symptoms disappear in the first week, but I think for those of us in a bad UC flare, this will not be the case. Funny enough, like KK-SCDer, I am also 10 months into the diet and am feeling pretty good these days. Unlike KK-SCDer, I still have the bad cramps with BM and do still see blood sometimes but a lot of the other symptoms have gone away or gotten so much better. I am back to feeling almost whole and able to go about my life without worrying about accidents. You can get there too, but just don’t be rushed. It sounds to me like you’re starting it in exactly the right way, with the broths and the pureed veggies. How’d the banana go? It took a long time before I could tolerate ripe banana, basically until just recently. Anyway, we’re all really different re which symptoms are our worst ones and how the diet helps us. Also, I recommend thinking about supplements as well if you haven’t already. You want to get the good bacteria in you, so either a probiotic or some form of the 24-hour yogurt. Go slow with either of these. I’d recommend L-Glutamine as well, which is something Bev on this site introduced me to. This might help bring in some of the benefits you found with the aloe vera.

    Also, part of your symptoms getting worse or not better at first may be related to die off. You have to ride this out. For some, it gets worse first, then better.

    If you’re committed to SCD, I’d suggest staying to strictly legal stuff for the first 3 months at least. Even many of the legal ingredients on the list I haven’t been able to tolerate until very recently! The body takes a while to get better. But I understand it’s hard to give up something like aloe vere that’s been really working for you. I’ve read a lot of good things about aloe vera too. I think you’ll just have to make you’re own call on that, or experiment and see. If you falter on SCD, don’t beat yourself up about it, just get back on the horse. Start with the broths again and let your body reset. You’re very lucky to have a support team of cooks! That’s really great.

    Good luck and keep us posted!

  5. Teanna
    Chase March 22, 2013 at 4:54 pm #

    Thanks so much for all the replies and support! I have started probiotics and l-glutamine, as well as EVOO, so hopefully some improvement soon! I have to say I think one of the issues with SCD is “Breaking the Vicious Cycle.” As helpful as it was in some aspects, it also gave out the impression that results would come quite quickly. I know it says for UC to stay on it for 2 years for UC to fully heal (it think?), but all the testimonies in the book and on the website seemed like miracles with huge improvements in weeks, and Gottschall also stated that if you see no results in a month this diet probably will not work for you… Anyways, I very much agree with you guys that everyone is different, everyone tolerates different foods and everyone heals at a different pace!

    MikeL, I did get checked for bacteria/parasite, but the doctor didn’t check me for C-diff. I can’t remember why because it was a few months ago, but he said I couldn’t have it for some reason or another. Looking back that sounds ridiculous (think of all the diseases/infections that present atypically.. sometimes it seems more often than not!), but I hate to say I was a compliant, unquestioning patient. I always seem to freeze in the doctors office, and then kick myself after for not asking more questions and being more aggressive! However I did just see my homeopath and she said there was an amoeba/parasite present so I’m treating that homeopathically right now. It’s been a week on her treatment and starting to feel some changes. Last time homeopathy really helped get me back on track, so fingers crossed! Again thanks everyone for the advice!

  6. joanna March 22, 2013 at 6:09 pm #

    hey chase. yeah, I agree that it’s annoying about the testimonials. that’s how ALL books are. I don’t think the author wants to put in any stories that are less than miraculous. that doesn’t really sell books, you know? also, I would definitely say MAKE THE YOGURT! I use coconut cream and I can tell you I saw significant improvement after eating it. I waiting like 6 months to make it because it seemed like too much work. it really makes a difference though. I’ve been wanting to try goat’s milk yogurt so that will be my next adventure.

    I’ve been on SCD since august 2012 so about 8 months now. i’m still pretty sick and am starting IVIG therapy soon. it definitely hasn’t been a miracle diet, but it has taken away a lot of the frequency and all over pain I was experiencing. I did try humira in January because I needed a few blood tranfusions in November 2012. the humira gave me c diff pretty quickly and I was in the hospital for a week. I think you’d know right away if you had c diff. it is basically 10x the worst flare you have ever had. it is non stop diarrhea, nausea, pain, and fevers. I had a constant 103 F fever for about 6 days. I ended up fainting on the toilet and then going to the hospital around 3 am. they treated me with heavy antibiotics and that’s kind of where I am now.

  7. Teanna
    Chase March 24, 2013 at 9:50 am #

    Thanks Joanne, doesn’t sound like I have c-diff then, I’ve never had a fever and I still have “good days” (I say “good” because really they’re not good, they’re just not as bad as some others!). Your story sounds like a tough one, what a long journey healing is! Too bad about the Humira, I’ve heard lots of happy stories about it, but again: everyone’s different! And antibiotics are never fun with our already lack of good gut flora… make sure you take a good probiotic to get that healthy bacteria back! (and keep eating your yogurt). I did have the yogurt at one point, but I was making it out of cow’s milk, maybe that was an issue? Coconut cream sounds delicious though…

    I’ve also never heard of IVIG before you mentioned it here, I looked it up and it sounds interesting, definitely keep me updated on how it works out for you! Fingers crossed!

    • joanna March 24, 2013 at 9:05 pm #

      I have “good” days, too, and non-UC people would probably call it a “hellish” sick day. kind of sad, really.

      luckily, the antibiotics were a life saver. i’m sure I would’ve died without them. I ended up getting ileus of the colon which is when the c diff spores cause paralysis and eventually toxic mega colon. I was so scared i’d have to get emergency surgery, but vancomycin saved the day. I am a probiotic junkie, too!! yogurt is still my favorite. if you want to try the coconut cream yogurt, there is a brand called “aroy D” which is SCD legal. a 6 oz serving of the yogurt has about 460 calories which is awesome if you need a good filling meal.

      IVIG isn’t approved for UC, unfortunately, but I have neuropathy and a blood disorder, too, and it’s approved for those. maybe in the future researchers will find that it helps UC. I hope it helps mine, but i’m mainly doing it for the blood disorder- hypogammaglobulinemia. it will just be an added bonus if it puts me in remission!

      • KK-SCDer March 25, 2013 at 11:11 pm #

        Joanna,

        Lets not get ahead of ourselves. There are NO scd legal commercial coconut milks. There just aren’t. I see this all the time with newbie SCDers trying to find ready made legal items. You have no idea what is in these milks, and unless you are symptom free, you shouldn’t be trying them. These are very advanced foods, and SCD requires, in Elaine’s own words, “fanatical adherence”. There may be all sorts of additives in the coconut milk which the manufacturer is not required to list. If you are not happy with your progress on SCD, cut these commercial items out of your diet and see if that helps. There are no shortcuts on SCD. There are plenty of recipes for SCD coconut milk online. SCD is difficult, and it will not work if we take shortcuts. If you insist on doing a “modified” SCD (which IMO is equivalent to doing no diet at all), that is your prerogative, but lets not call these items SCD legal.

        • joanna March 26, 2013 at 3:22 pm #

          aroy d doesn’t have any gums or preservative in it so it’s all good. i’ve made lots of coconut milk and just prefer using this because it’s so much creamier. it’s always too grainy when i make it.

          i was just telling chase what i do since i don’t eat dairy yogurt. it works for me and could work for her/him, too. SCD isn’t written in stone with what people can tolerate. i can’t eat eggs or chicken and yet those two are both in the intro diet. so yeah, i insist on modifying the diet to work with your needs. elaine SUGGESTS it in her book if you’ve ever read it. no need to be so judgemental, kk. this site is for people who want to bring people up, not bring people down. if that’s the type of personality you have, then i suggest going someplace else. with that attitude, you’ll never be in remission.

          • KK-SCDer March 26, 2013 at 7:38 pm #

            The intro diet absolutely requires people to not eat what they cannot tolerate, and in her book Elaine encourages people to not eat eggs on the intro if they cannot tolerate them. SCD is very relaxed with what you can _remove_ from your diet. It is very _strict_ with what you can add. When people blatantly advertise commercial products as being SCD-legal, it is extremely counterproductive to those who try SCD and fail because they use these products. How do you know this milk has no gums or anything else? Because it says so on the label? If only it were that easy. Elaine required a letter, written on a company letterhead, stating that there are no illegals in the product in order for a commercial product to be declared SCD-legal. If you have such a letter, I definitely apologize. But emails don’t work, because representative will tell you what they think you want to hear and can’t be held responsible. That’s why an official letter is required. My purpose on being here is to help those who are attempting the SCD. Commercial products should not be used by those in the early stages. Period. If I recall correctly, Joanna, you wrote on here earlier about not seeing the results you were hoping for with SCD. Without being judgemental, I’m just suggesting that you try to take out these commercially available items and see if that helps. Personally, I have been in remission for the last 7 or 8 months. I plan on staying on SCD for as long as it takes to get symptom free.

  8. joanna March 26, 2013 at 7:56 pm #

    kk, why would a company lie about coconut milk products? that makes absolutely no sense. trader joe’s also has coconut milk with no additives yet you say they are lying? it’s not like these companies are out to get people. they will get in trouble if people have food allergies and can’t consume these products and end up dying. it’s common sense.

    I did write a post and that was before I started making my yogurt. I noticed a positive difference from it so it’s not “illegal”- I just want to share that. it’s GREAT, in my opinion. I began eating it in January after 6 months on SCD so it’s not like it was having an imaginary coconut allergy in the beginning. I listen to my body’s needs very well. and yeah, it’s frustrating when I follow a diet to a T but still need blood transfusions and tons of meds. but that’s just the way this disease works. I will never be delusional in thinking that diet can cure an incurable disease.

    according to your first post, I wouldn’t say you are in remission at all if you have bleeding and tenesmus. maybe you should try changing the diet around to better suit your needs.

Leave a Reply