Help Me Avoid Prednisone and Surgery

Amy Kathleen

Here I am with my dog:)

Introduction:

My name is Amy I am 24 years old I’m an LPN going back to school for my RN. I am married to the most awesome husband! We have two dogs and a cat who all join me on my many trips to the restroom.

Some more about me:

I enjoy anything outside… I’m starting to get into white water kayaking. I’m hoping to get past my flare ups by spring/summer. I’m taking pool sessions luckily No flare ups during the pool sessions yet. I also love hockey go flyers!!! Yes I’m one of those obnoxious fans. And if u ever visit any place around where I am I could tell u exactly where the bathroom is!

Current Colitis Symptoms:

I am currently having the horrible run to the bathroom gas or I just may shart. Along with lots of blood and no formed bowl movement just a bunch of mucous and blood. I go at least seven to eight times a day but each time I use the restroom I have gas with blood. And lots of painful bloating. The kind that feels like a bunch of knives jabbing u in the gut.

Help Me Avoid Prednisone and Surgery

From a little girl I was diagnosed with IBS no colonoscopy though. I always had pain bloating and a mix of constipation and diarrhea then Nov. 2011 I had blood in my stool and the pain was much worse. My primary care physician sent me to a GI doctor and he thought just internal hemorrhoids but he still ordered a colonoscopy where he discovered I had proctosigmoiditis and alot of granulation tissue and once the biopsy came back it confirmed I had ulcerative colitis.

Later after just being put on rowasa enemas, I had a severe flare up and ended up in the hospital dehydrated with lots of pain. I was put on fluids given morphine and then put on asacol, two pills twice a day. Just recently, after another flare up, he added two more asacol pills to my pill schedule.

I am trying to avoid prednisone at all costs! So since the most recent flare up I came across Adam’s YouTube video on the scd diet ill be starting it this week. The only question I have is how do I start the scd diet? I know what I need to avoid but I heard u need to start it with just a few foods, what are these foods? I need helpful tips on how to start this diet properly. And being on prednisone and having my colon removed is not an option for me. On another subject I just need to vent about…I never realized how rude some people are in public restrooms. Now I’m sure all UC’ers know our gas is explosive… Well I went into a stall and I mean I had to go bad!!! And the lady in the stall next to me sighs in a snotty way and goes ” that’s just gross”. At that point I got upset and embarrassed at the same time.. It gets tough when flare ups occur. And I just want flare ups to end! I’m praying this scd diet works.

Colitis Medications:

Currently asacol two pills three times a day. And trying to avoid prednisone. Trying this diet before I go back still having flare up… I don’t like the prednisone idea I know how hard it is on ur system.

written by Amy Kathleen

submitted in the colitis venting area

20 Responses to “Help Me Avoid Prednisone and Surgery”

  1. uc family boyFebruary 28, 2013 at 5:34 am #

    Hi,

    during a flare when I went out to watch a movie I needed to rush to go and half way through having a BM a father and his toddler took to the other cubicle. Whilst first the father went and than the son (which in between the toddlier was commenting on his fathers BM, and than taking ages as he attempted to ‘make one like daddy’) I sat in silence as I was sure the son would be the first to pick up on the noises and smells coming from my direction :-(

    Funny when I look back over it now, its the only way we can deal with it…just laugh. Its easier to when things get better.

    On a more helpful note, check out http://www.pecanbread.com. This will help with introducing foods on SCD

    • Amy Kathleen
      AmyFebruary 28, 2013 at 8:37 am #

      Thanks for the tips :). Humor is a great way to deal with things. Been on scd for a few weeks now so starting to introduce more foods. I will have to try that recipe. Thank you again.

      • Chris from Massachusetts
        Christopher from MassFebruary 28, 2013 at 3:53 pm #

        Hi Amy – Do you notice any improvements being on UC for a a few weeks now?

      • Chris from Massachusetts
        Christopher from MassFebruary 28, 2013 at 5:46 pm #

        I mean SCD

  2. Kimberly
    KimberlyFebruary 28, 2013 at 11:03 am #

    Hi Amy,

    I had bought the SCD book called breaking the vicious cycle, it has tons of useful info in it including what to eat on SCD, what not to eat, and what to eat while flaring. When you very first start the diet and you are flaring the book says you should only eat certain foods for about 5 days or so. These foods are dry curd cottage cheese (farmers cheese), homemade gelatin, broiled beef patties or broiled fish, and some homemade chicken soup, which the recipes for the soup and gelatin are included. Also if your diarhea is not too bad you can eat eggs. After the 5 days you can try to eat the SCD diet which is meats, veggies, fruits, nuts and some cheeses. No breads, pastas or rice, no sugar, and no dairy except certain cheeses and the homemade yogurt. It is really eliminating all processed foods from your diet. Some of the foods, such as the nuts, you introduce slowly so you don’t upset the UC.
    I hope you get better soon! I think most of us hate the dreaded prednisone and it’s nasty side effects. Also you’re right, people are very rude sometimes, but it’s not like we can do anything about it! We have to go when we have to go! They just don’t know that they are lucky to have normal bowels unlike us. Good luck Amy! I am a huge animal lover as well :)

  3. Chris from Massachusetts
    Christopher from MassFebruary 28, 2013 at 12:22 pm #

    Hi Amy,

    Sorry you are in a flare – They Suck. Zap all the energy out of you! I go on movie marathons when I am in a Flare because thats really all I can do – well that a poop a lot.

    I owe A LOT to the SCD diet because it saved me and gave me starting point for my current diet. Now however I tend to eat a lot more meat and lactose free dairy then salads and almond flour. I find meat and lactose free Dairy to be the most tolerable for me so I just stick with them – I pretend I am on the Atkins diet! =) I like Gary Taubes’s book because he helped me understand that this is not as unhealthy a diet as we were made to believe.

    My Whole Foods carries Friendship Farmers Cheese. Just call around different whole foods in your area and ask for the cheese department and ask if they have it (It makes a great shake too if you blend it with water).

    Also Whole Foods has the Mom’s Chicken Soup – Totally SCD Legal and Delicious.

    White Grape Juice – is my Flare Killer =)! I really cant eat too much when I have a flare but I can keep the juice down. I get the whole foods white grape juice.

    P.S. I know this sounds weird but after the flares my system was very weak, and I suffered chronic constipation. If this happens to you do some research on Warm Salt Water Enemas – they work great for this.

  4. TimFebruary 28, 2013 at 1:56 pm #

    Having had UC since 1994 …The ONLY way I can get into remission is the use of an immune suppressing drug like 6Mp. My system can tolerate it … better than Prednisone and surgery ! It’s all about the quality of life for me. Good Luck!

  5. HeatherFebruary 28, 2013 at 3:30 pm #

    While in a flare Rowasa alone never worked for me. But when I paired enema Rowasa with Proctofoam HC (a type of pred) within 3 days I had noticeable improvements. This included fewer BMs (from 8+ down to 2 a day), less blood, reduced stomach noises, and reduced gut pain. After 2 weeks most UC symptoms cleared. However, BMs remained loose and smelly. I replaced my morning eggs with a 1/2 cup of oatmeal and added a probiotic. I then waited another week while continuing enema Rowasa and Proctofoam HC treatments at night. I’m happy to report harder BMs and less offensive smells in the bathroom.

  6. RachelleFebruary 28, 2013 at 3:44 pm #

    Hi Amy!

    Bananas are my best friend right now. I make sure to have one for breakfast at work as they are best to be taken on an empty stomach to help the gut. They are slowly helping my gut heal. I also started taking Pentasa.

    Best of luck!

  7. John WeyerFebruary 28, 2013 at 5:34 pm #

    Remicade is the miracle drug! Saved me from prednisone and surgery! Tell your doctor to put you on Remicade infusions!

    • AngelaFebruary 28, 2013 at 6:05 pm #

      I completely agree with John!

      I’ve been on remicade for 9 years! It was the only way to get off prednisone as I was on it for 3 years straight (with no tappering) and became steroid dependent. I won’t touch prednisone again! I’ve also never felt better on it :)

  8. TamaraFebruary 28, 2013 at 7:09 pm #

    Hi! I’m Tamara I’m 29 and I’ve had UC for almost two years. I’m finally feeling better. The best advice I got that is 100% working is take sulfur out of your diet. Lower it as much as u can. Also take a probiotic everyday. The best kind u can find. I’m finally feeling better. No prednisone.

  9. rjwFebruary 28, 2013 at 8:39 pm #

    Amy,
    Seems everyone is going to have a little bit what works for them advice. I imagine you have got to find it out for yourself with this website as one of your main resources. Maybe you can look at what others have done and see if that works. FMT “Fecal Transplants”. EVOO Extra Virgin Olive Oil. Vit E emenma’s. Other tests for floral imbalance or even C-Diff. Have you been tested for C-Diff? Find out what your inflammation numbers are with the blood tests SED Rate and Non-Cardio CRP. Get you anemia and Iron checked. Dont forget about the different B Vitamins and D as well. Some people have even gone back to or started smoking as apparently it is starting to come out that nicotine can help keep symptoms at bay even for some Crohn’s patients. Research and try that is my advice. Do what you can to minimize RX especially steroids, TNF inhibitors and surgery. If all fails well you can always go RX route. But remember none of us are in your shoes so advice is cheap but you have to live with whatever choice is made. Personally, I would go out and but the best EVOO you can find. Read on this website the section healing with Olive Oil. Add the other nutrients and probiotics like VSL#3. Start researching FMT. And get your different blood tests done especially the C-Diff. Best of luck.

  10. joannaMarch 1, 2013 at 12:38 pm #

    i think the MOST important part of the SCD diet is the yogurt. you just have to make it if you’re gonna do the diet. i’d recommend getting a yogurt maker- they aren’t too expensive (mine was $60). it works way better than the oven light method.

    also, do as much meat/eggs are you can. protein is the easiest food for the body to digest since it breaks down in the stomach. you colon doesn’t have to do any work.

    • Chris from Massachusetts
      Christopher from MassMarch 1, 2013 at 1:02 pm #

      Totally agree joanna – Although I do not make the yogurt. The meat/eggs do not bother me at all. I am confused as to why more UCers never really try just eating mostly meat. Maybe some do and maybe it doesn’t work for them, but I would be curious.

  11. Amy Kathleen
    AmyMarch 2, 2013 at 2:58 am #

    Thank you all for the great suggestions, and advice. I appreciate it all and will take all into consideration. I have been on a research drug which is coming out in march (approved by fda) it’s for mild/moderate flares. the research team explains it as a topical steroid for your colon vs prescribing prednisone w/all it’s nasty side effects. it’s a pill that’s coated so the actual medication doesn’t release until it hits your colon, so it’s not going into your blood stream. However I am not sure if i’m on the actual medication or the placebo. I’ve been dealing w/a moderate flare for a while now and just this week I only had 4 BM’s vs 7-8. and it’s been more formed and less bloody. and I actually feel relieved after the BM, not the feeling of getting off the toilet then having the feeling to go again 5min. later. So I am not sure if it’s the new medication or the sCD diet but i’m still doing both, however, i have noticed a difference in the feeling of not getting bloated with the scd diet and not as much gas pain. and I now feel safe to exercise outside of my house, i did 1/2 a mile the last 2 days…working up to a mile still not feeling totally comfortable going too far away from my house on a run. But as michael buble says i’m feeling good. feeling some improvement. I think now that i’ve changed my mind set to knowing uc is not the end of the world, and to be depressed really doesn’t help.. and the support of you all, my attitude towards uc has improved :) thanks again for all the great suggestions :) ~Amy

    • SueMarch 3, 2013 at 9:48 pm #

      Hi Amy,
      I have been on the SCD Diet for six weeks now. I was hospitalized for a week due to a horrible UC flare. My doctor gave me samples of the drug you mentioned. However, I only have 12 tablets when
      60 are required for full healing.
      My insurance coverage brings the cost of the Rx to $1200!
      I have suffered with UC for 8+ years.
      The samples will run out in a week. Please let me know if you know of any way I can get this
      medication at a lower cost.
      Thank you so much!

  12. Amy Kathleen
    AmyMarch 4, 2013 at 11:12 am #

    Sadly I don’t if you live in the us call up care credit I don’t know if they do rx or not. You would have to contact ur insurance company. They may give you suggestions.

  13. Anna in DC
    AnnaMarch 5, 2013 at 9:07 pm #

    Amy – I’ve been saying this all over the website here – but DO check out the GAPS diet and attempt to avoid being on medications for the rest of your life. We’re too young and we can do so much healing by diet alone! The introduction diet is difficult but provides true healing…. it’s a lifestyle change, but totally worth not being drugged up and dealing with God knows what side effects in the coming years!

  14. KenMarch 9, 2013 at 11:07 am #

    Amy,

    Three months ago I was where you are now. I had been flaring for 8 months, hoping Asacol would stop my symptoms. But it never happened. I tried changing my diet, but it made little difference in the symptoms.I was going to give in and get on Prednisone, just looking for any relief of UC even if it meant other side effects.

    I chose to start taking supplements instead and see what happened. Extra virgin olive oil (EVOO), L Glutamine, Flax Seed Oil (omega 3,6, and 9), Co-Q10 (antioxidant), 40 billion probiotic, and a multivitamin.

    I started it in the middle of December, and by the middle of January I was feeling almost normal. No more blood. No more diarrhea. Fewer runs to the bathroom. No sick feeling. Coming up on 3 months now, and I dare say I am as close to normal as I ever dreamed I could be.

    I was skeptical myself, and it didn’t get better overnight. But it seems to work.

    Good luck,

    Ken

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