I Still Believe

Kara using SCD for ColitisIntroduction:

I was diagnosed in November of 2004 with UC and started the SCD in 2005. I created a group on Facebook a number of years ago for SCD and am happy to say it is beneficial to not only me by the nearly 1000 members. I am a 35 year old wife and mother of a two VERY active toddlers. My son just turned 4 in March and our daughter whom we adopted from China (summer 2012) will be 3 in June. I’ve been a stay at home mom this year, but will start back as a Speech Language Pathologist in the Fall of 2013.

Some more about me:

I love to sing, dance, be outside, walking, riding bikes, camping, photography, digital photobook making, photoshop editing, playing board games and cards, cooking, gardening. We live in a small town in Kansas with no real close relatives living nearby. I originally grew up in South Dakota for most of my life. My parents were both educators. I have 2 older brothers and an older sister.

Colitis Symptoms:

I currently amy in a full on flare that has been going on since about August 2012. It began when we took a 2 week trip to China to adopt our daughter. While in China it was next to impossible to find anything to eat that meshed well with my SCD. I also had been on the diet for nearly 7 years with very few symptoms so I was not paying close attention to condiments, added sugars and gums etc. Before we left for China I had a pretty major sinus infection and so I took a ZPack (Zithromax) starting the day we left. By the time I’d spent 2 weeks in China, on an antibiotic with the time change, constant traveling, stress of the adoption, not eating the right foods but doing the best I can and then that 15 hour flight home and back to our house with now TWO CHILDREN. Whoa! I got wiped out.

I Still Believe

So, I originally was diagnosed in 2004. I was living in Colorado Springs, my first year out of grad school and my first real job as an SPL in the school district. I was pretty stressed out at work since my boss was requiring a whole lot of me with the detailed analyzation and documenting and then documenting when I had documenting and then compiling that into a report to analyzed my original analyzation. You get the point!! and I was living in my own apartment, going out on the weekends with friends to dinner, drinks, singing karaoke (one of my favorite things to do). I was even dating a little bit using match.com. Life seemed like it was going okay and I was adjusting to being in the working world. Wham!! Just before Thanksgiving I started getting watery dh like once or twice a week, then almost once daily. I was concerned because I’d never had any problems with my digestive system. No reflux, heartburn, stomachaches or either dh or co nstipation. It was so odd. My mom suggested I get in to see a GI doctor quick since both she and my older brother have Crohn’s disease. I was mortified. Did I have Crohn’s too?

The next task was finding a GI doctor. At that point, any GI doctor would do. Well, I came to find out that I should have done a bit more research. The only Doc I could get into was Michelle Hor and yes her last name is HOR pronounced with a long o. She had an appointment to squeeze me in a weeks time. I had a colonoscopy done that first week in December and she found pancolitis. I then got much worse in the next few days following my colonoscopy and admitted myself to the hospital. I had some sort of ilium thing they found when the did a CT in the ER. Whatever, so I was in the hospital for 3 days and NO PHYSICIAN came to see me. My trusty DR HOR turned out to be a flakey one. I stayed Sunday night, Monday Night and Tuesday Night without my GI doctor coming to see me. I was in a town with no family and none of my friends were even aware I was in the hospital. I really wasn’t sure who I wanted to know about my dh problem yet. Still on no meds.

Needless to say, I left the hospital, sought out a new GI, but this all landed at about Christmas break time. I drove home to my parents’ house in South Dakota and basically thought I was dying for the next week and a half. By the time I left I was taking 40 mgs of prednisone tid. That’s right 40 Milligrams THREE TIMES A DAY!! 120 mg of prednisone. Ya think that was a good idea?? OMG.

As soon as I got back to CO I saw my new GI doctor who looked like Mel Gibson. Hmmm… at first is was a little weird talking to him about my ass and poop, but it got better. He started me on Asacol, and tapered my prednisone down to 40 a day. Then, when that wasn’t working and my symptoms got even worse, he gave me some retention enemas and well, you guys probably know, the works. All said and done, nothing really worked to keep me from running to the bathroom 15-20 times per day, The Asacol just made my cramping, bleeding and dh worse and gave me terrible headaches and nausea. The prednisone worked great on it’s own until I got down to 20mg and the bleeding came back. This went on and on and my sick days from school ran out. I had gone from 125 lbs down to like 106 and I was exhausted all the time. My ass was raw from all the dh and I was compulsively eating because first of all it was like the only thing I had left that was semi enjoyable and also, everyone was t elling me, “you need to gain some weight” so I pretty much hung out near the toilet, ate, watched movies, read books and occasionally sat out on my balcony. Boring and crappy friggin’ life.

One day in February, I woke up and I was fed up. I was so tired of living this way that I literally said, I’m going to find an answer or put myself out of my own misery. I have NEVER had a suicidal thought up until that point. (I was on prednisone 20mgs per day) and it scared me. I called my sister and told her that I wanted to die. I did not see any point of going on living this life everyday just to survive it. She was devastated and felt helpless and sad for me. I then turned to the internet. I searched for days and nights and read every single testimony I could find about UC. Most were very discouraging like, “I’ve had UC for 8 years now and my symptoms never went away. I have dh still and no drugs help for very long.” Right?? And here’s me thinking, “Oh, I’d have just killed myself after the first 2 years and gotten on with it.”

Then I found information on Jordan Rubin’s Maker’s Diet and the Guts and the Glory program. I read his book cover to cover in one night. I read Breaking the Vicious Cycle and all about the SCD. I didn’t even see the diet as a restriction because I honestly believed if it could work, that it would be the one thing that could change my life from what it was (which quite frankly it was NOTHING) to a semi functional life where I can have some pleasure and social interaction and maybe not feel terrible every waking second of everyday.

I committed, I did it (using my credit card to buy groceries) and within 3 days I was feeling amazingly better. I went from 15-20 BMs a day to like 6 and then 4 and then I remember the first night I slept all the way thru. It was glorious. I went back to my doctor after about 4 weeks on the diet and told him I had weaned off the prednisone and I was now having about 2-3 BMs a day and they were formed. He was totally blown away. He even wrote in his report that it must have been some sort of bacterial infection and not UC since it responded to the diet the way it had. Regardless, I was feeling better than I had in a really long time and it was Spring in Colorado. I was out and about and turbo charged. I did have some setbacks along the road but nothing major enough to have to revisit doctors about.

My remission lasted me from the beginning of 2005 well into 2008. Around the same time of year (november) in 2008 I was pregnant with our son. I had a bad flare at about 30 weeks of pregnancy and had quite a scare. Again, I took Lialda (melamine) and again it just did some awful bad things to me so I stopped it. I didn’t want any other drugs since I as pregnant so I just sat with it. The flare lasted a total of 8 weeks and it cleared up on it’s own. I was on SCD throughout this time. Anyway, fast forward about 3 more years to this past summer (August 2012) when we traveled to China to adopt our daughter. That is where I am today. I have been in a full on flare since then. Only difference this time is I’m not pregnant so my doctors want me to try every drug under the sun again. The first, Asacol HD given by my doctor in November 2012. Like the last 2 mesalamine drugs I took, it wiped me out and gave me severe cramps and increased dh as well as bleeding and not j ust mucus, but chunks of tissue passing. He then told me that that was not a reaction to the drug but my body just merely weaning off the prednisone. Hmmmm…. so he wanted to start me on Remacaid immediately following that. I said I wasn’t interested in Remicaid and so he divorced me as a patient. He sent a certified letter to my home saying he’d no longer be responsible for my care.

I found a new doctor. He listened to me and then said,” Why don’t you try Colezol?” I said What the heck?!? and then went thru the exact same reaction and wipe out as with the Asacol HD. So much so, that I had to go back on Prednisone just to get myself out of the mess. So, after that he said, “Why don’t you try Sulfasalazine?” to which I said, “Why don’t you just leave me alone?” I then began to take a probiotic lactobacillus and vitamin D3 daily after my prednisone. I have tapered from 40mg daily down to now taking 2.5 mg daily and still having pain and mucus. My stools are formed and happening about 2-3 times per day with some mucus passing and gas 3-4 times per day. I usually have to go to the toilet when the gas and mucus pass just to be sure. (I know you all can relate)

Medications and Treatments:

I have had terrible reactions to all mesalamine drugs I’ve tried: Asacol, Lialda, Asacol HD and Colezol.

I honestly think that being on the prednisone had delayed my healing. I know that prednisone works to decrease the inflammation, but it also supresses your immune system and takes your body longer to heal. Why would the gut be an exception? I feel like especially after I got down under 10mgs that the more I decrease, the more healing I’ve allowed to take place. I have been hardcore SCD for the last 3 months to the point of driving my family crazy with the broth thing and super picky about every speck of food that goes in my mouth. All worth it though. I am going to recover and I am confident that there is a day coming soon when I will wake up without pain and having to RUN to the bathroom first thing.

My question here is of those of you who take a probiotic, do you find that every once in a while you need to take a day or two break from it? It seems to almost constipate me after a while and I get a literal pain in my butt like when I’ve taken Immodium. Anyone else have experience with that. Lately I’ve just been trying to eat a lot of veg and fiber like celery and blueberries and then cut out cheese and other dairy even the SCD yogurt. This seems to help a little.

I was taking a bunch of supplements during this flare around Christmas into the new year, but I had to just stop everything and give my body a breather. I have continued only the lactobacillus and D3 but plan to add back in the Curcumin and Fish Oil as soon as things level out again. I do also have an Antioxidant tablet that I take with B vitamins that I’d like to add back soon too. I just need to give my body a rest. I’ve been on a long dose of prednisone and had two terrible drug reactions in the last 4 months.

written by Kara

submitted in the colitis venting area




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15 Responses to I Still Believe

  1. Jackie April 13, 2013 at 1:23 pm #

    Hi Kara,
    My son has UC we are trying the low residiuv diet at the moment.
    He was in the middle of a flare and s far it has worked .
    I hope you give it at ty it’s one of the few things that have worked so far.
    Also someone suggested L- Glutamine supplements going to try soon

    Jackie xx

    • Kara
      Kara April 14, 2013 at 1:59 pm #

      I will research the l-glutimine thanks, I’ve never heard of that one. Hope your son continues to improve.:)

  2. bev April 13, 2013 at 4:48 pm #

    Hi Kara,

    I’m one of those people who does not take meds for UC any more. I did for 14 years, but they were making me even sicker. I went off of them after taking a good probiotic and L-glutamine, which took all of the UC symptoms away!

    I have never missed even one day of the probiotic. I have heard all kinds of conflicting views about stopping them once in awhile…but I’m not so sure that pertains to those of us with UC. I have been taking them for over a year, and have never taken a ‘break’ from them. I have had no problems whatsoever!

    Cheers,
    Bev
    :)

    • Kara
      Kara April 14, 2013 at 2:01 pm #

      I hate taking meds. I always just feel crappier when I’m on them and all of them (besides prednisone ) really don’t help at all anyway. I am going to check into the l glutimine thing what is its function in controlling the inflammation?

  3. Lane April 13, 2013 at 5:16 pm #

    Hello Kara,

    I’m sorry to hear about what you have been going through. I am on a probiotic and have never gone off it. Have been on it almost a year and my symptoms are gone. I was on medications but they did not help me. I sincerely hope you will find something that will help you. Best wishes, Lane

    • Kara
      Kara April 14, 2013 at 2:02 pm #

      Thanks Lane. I have found the straight acidophilus is best and has helped mr tremendously. Hope I can find the right dose to keep up my progress.

  4. Garry April 14, 2013 at 12:25 am #

    Kara
    Terrific write up. So sorry to hear you continue to suffer. Sounds like you’ve had great success with the SCD so far and just need to get things back to a steady state. I’ve had success with david klein’s self healing for uc and crohns. Paperback is available on amazon but he basically advocates for a three pronged approach of rest/sleep, dietary restrictions and stress reduction/happiness enhancement. While his recommended fruit based vegan diet is not for everyone and did not work for me as well as the SCD, I have had success over the last few years using Dr.Klein’s approach to control a flare and return to more normalized bowel function.
    Hope you feel better soon.
    Garry

    • Kara
      Kara April 14, 2013 at 2:05 pm #

      I’ve seen other reviews and raves about Klein so I need to check it out . Thanks . I’ve also found that restricting my eating to a few small meals per day and nothing after about 7:00 PM makes a big difference and I sleep a whole lot better too.

  5. Caroline
    Caroline April 14, 2013 at 3:43 am #

    Kara,

    Thank you for sharing your story – after all you have been through you still have a sense of humor! :) I agree with you in feeling that while prednisone is great for relieving inflammation, it delays healing. Since I have been off my pred taper completely (about 3 weeks) my energy is returning and I am absorbing nutrients and gaining all of my weight back. Prednisone is a wonderful and terrible drug.

    And I can so sympathize with you about feeling like you drive your family crazy on your diet. I’m on the Paleo Autoimmune protocol and we’ve had several family events lately. I travel with my own little cooler as a back up and make sure I have some fruit, sardines, and an avocado. They thought I was weird before so now I’m just bringing it to a different level. :)

    Keep experimenting and I hope you find what works for you soon so you can start feeling better!

    • Kara
      Kara April 14, 2013 at 2:13 pm #

      I’m glad I’m not the only crazy foodie. I feel like such a killjoy so often. But, I have to say, my kids and husband eat about 2/3 SCD and the rest pretty much gluten free. My husband thanked me the other day when he returned from his physical saying all his tests came back within normal range and limits including cholesterol and blood pressure, which both were high and both he was taking meds for before we got married. It is no doubt a healthy way to eat and live. Sometimes just so hard to incorporate into a life that’s on the go and socially busy. Lucky for me, I’m a wallflower.:)

  6. Kara
    Kara April 14, 2013 at 1:05 pm #

    Thanks to everyone for your comments. I have not used the glutimine and have not even heard of it. So thanks and ill have to check it out. I just switched from a generic acidophilus to culturelle and it did not sit well with me. I had some pretty intense cramping and pain as well as in creased bleeding. That was all within about 72 hours of taking the first one. Needless to say I’m back on the generic one and I think 3/4 of the tablet is about perfect to keep me regular without binding me up too much. I also think I may have a slight stricture. I’ve really just Ben eating meat, veggies( mostly sautéed spinach, garlic,and avocados) , fish and fruit plus pumpkin muffins (almond and coconut flours and coconut oil). Soups, stews and gelatin are really the only other things. I also went to a meditation workshop yesterday at our local yoga coop and it was great. Postcats on relaxation like 3minutehypnosis.com I’m hopeful that sending my kids to daycare full time and getting back to work will help occupy my mind and get me moving so I have less time to obsess and stress. Any other suggestions as far as diet or supplements that may be helpful. I’m having a flexible scope done in a week and I just know my doc is gonna say its time to start the immuran. :( kind of scared for that discussion and the stress of all that. Whenever I have those kind of talks with my doc it reminds me that I have a disease and I am going to have it forever. I just hope that I can continue to manage it for the most part, naturally.

    • shelly in maine April 14, 2013 at 1:38 pm #

      hi Kara,
      what is interesting about the probiotics that Bev takes is that it has a delayed release I noticed once I brought it home(I also take vsl 3)- but that should keep it from giving you cramping and help it get to where it needs to.
      Also, don’t forget to go easy on spices and especially the nut flours. I have found that as I have more food sensitivities now and have had to give up many foods I could eat before.
      I just posted about the pecanbreadsite-stages and the four dark horseman of SCD by Jordan Reasoner…it just may be your system is more sensitive now.
      Probiotics, vit d, fish oil and try the other Bev stuff…good luck and don’t forget to keep track of everything!
      Best, Shelly

    • bev April 14, 2013 at 3:10 pm #

      Just remember Kara…the doctor is not the boss of you or your treatment…YOU ARE. You are in the driver’s seat and you do not have to go with everything that the doctor tells you. Doctor can be good ‘guides’ and even ‘advisors’, but they are not the decision makers. You are. We are. Our bodies, our choices.

      When you take the power over your own health, it’s really quite amazing. The helplessness sort of vanishes…strange, yet true!

      :)

  7. Jessica
    Jessica April 14, 2013 at 7:36 pm #

    Hi Kara,
    Wow, you’ve had some bad luck with doctors! It is really hard sometimes to trust our own instincts, but I’m finding with this flare, I am getting to know my body and what impacts it very well. I am also allergic to all ASA-meds. It is interesting that doctors want you to go through all of them before believing that really, our bodies can’t handle it!

    On a side note, I’m a special educator and could completely relate to your story of work stress with the data analyzing and paperwork! That is exactly what brought on my flare this time. Being a teacher is what makes me more concerned about going on Imuran as well. My doctor advised that if I do go on it, that I avoid people with colds and illnesses. That would be my entire school and classroom (I teach elementary and am in close contact with my students). It is so frustrating.

    Wishing you well soon. I would love to know what ends up working for you!

    Congrats on your new baby girl!
    Jessica

  8. joanna April 14, 2013 at 8:36 pm #

    hey kara. i’ve been following SCD since august and have found that it has decreased some of my symptoms but the biggest difference is blackstrap molasses.

    i was desperate one night after i got out of the hospital for c diff in february and i was looking for ways to stop the bleeding/cramping. i came across tons of websites about the benefits of BSM and started taking 1 tbsp a day. i figured i had nothing to lose since i was taking multiple supplements and they weren’t doing a thing- probiotics, l glutamine, astaxanthin, fish oil, digestive enzymes. it lessened my symptoms to the point that the only time i was reminded i had UC was my longer than normal bathroom times.

    i experimented a few days ago and stopped the BSM to see if it made a difference. well, what do you know. bleeding and multiple bms started yesterday and today.

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