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.

Can’t Believe I’m There Again

surfer Christine Byron Bay

Christine

Hi! My name is Christine,I was born in Montreal and now live in Byron Bay Australia.I’m 43 and i’ve had UC for about 20 years.

My Colitis Story:

The first 10 years of colitis were awful I was in denial.  Going from one specialist to another. Getting colonoscopy.  And given Salazopyrin, Asacol, Prednisone, and Imuran. They all masked my symptoms but didn’t really help me. I just couldn’t accept that I was sick.  Often very anemic but very good at pretending all was good! Then at 30 I changed my life-style. Moved to a small alternative town in Australia. I had 2 children and stopped all medication. (was previously followed by a very well known gastro in Sydney: Dr. Tom Borody) I started seeing a naturopath, and homeopath. I felt amazing during both pregnancies and while breastfeeding.  Totally free of symptoms,until the next flare up re-occurred…I was devastated.

Now for the last 5 years, I get 1 flare up a year which has brought me twice to Hospital for 10 days in a bad state.

Flare ups always occur around the same time;November! Most of the time,i think it’s related to stress pre-X mas. I am very busy;teaching yoga,running a surf shop and taking care of 2 children. I seem to notice that whenever I travel,a week or so before I get a bit of a flare up…(anxiety of traveling?)I can control small flare ups with all my supplements. But the last 3 years in November,it hits me hard and I have to resort to medication ,which I hate. I am now on Entocort ,expensive,but less side effects then prednisone.Does it work? Who knows…2009,it helped me, 2010 it didn’t.  Now i’m trying again,hopefully just to take the edge off! Finally getting a colonoscopy in January with DR Geoffrey Francis,whom I found on your site (thank you!!) It’s been 14 years,and I hate the hospital, I am traumatized by specialists insisting on giving medication and putting fear factor in your life.  But I know I’m well overdue. I’ve been meditating,and getting once a week massage.  It help with stress and I’m also seeing this fantastic kinesiologist! She’s helping me emotionnaly, I think there is a lot of suppression with UC and Crohn’s sufferers. I’ve just discovered this site; Adam you make me crackup!! I ‘ve checking the 2 diets mentionned (SCD and GAPS) Seems to be all meat ,I’m not vegetarian but can’t digest red meat. I have fish and chicken. But do prefer a vegetarian diet.  I ‘ve been Gluten free for 2 years,and it has really helped. The 2 diets scares me…Also 2 kids and a husband who loves his food makes it harder to follow a strict diet. I’m interested in trying the vitamin E enema, but can’t find the necessary material at the chemist to do it. I’m really looking into anything alternative…. I hate that I have to resort to Entocort,but when the bleeding in the toilet and frequency to go gets worst everyday, what do you do?

Has anyone been on Entocort ?

I really love reading all the blogs on the site. It’s weird when I’m healthy,i feel like i finally got rid of this horrible thing. When I’m well ,I’m really healty. I run, I eat everything(except gluten!) I drink coffee,i drink wine. And i forget for months and months that the colitis lies dormant in the depth of my colon….till the day it shows it’s evil head and makes me bleed and cramp.  Then ,everything else means nothing.  It takes over my life.  I’m grumpy and introverted.

I want my health back!!!!!!

written by Christine

Submitted in the Colitis Venting Area




17 Responses to Can’t Believe I’m There Again

  1. Dan K December 28, 2011 at 9:20 am #

    Christine,

    I have been and still am on Entocort. (See my story just published today.) My doctor says it is much easier on the bones versus prednisone. I do have flare ups when I try to reduce my entocort from 9 mg. to 3 mg., per my doctors instructions. I have never been able to get off of either entocort or prednisone completely since around November 2007. I have tried and am allergic to azathyoprine & mesalamine in Asacol / Lialda / Apriso.

    I don’t seem to have a lot of the steriod side effects. My doctor is really pushing me to get off of entocort & prednisone and try humira or remicade starting in 2012. He just says it is not good for me long term. Per my story, I am really struggling with trying humira or remicade.

    I don’t know if anyone else has information about how bad it is to stay on entocort / prednisone and what exactly it could cause. That would be helpful to know in making a decision as well.

    However, before I try humira or remicade, I am going to try the diet recommendations from Adam and others on this site to see if that will work for me as a first alternative to entocort.

    Dan K

    • Surfer Christine
      Christine December 28, 2011 at 4:30 pm #

      Thanks Dan, I feel for you…4 years on cortisone,Aouch! I’m lucky i suppose to have one big flare up a year and the rest of the time i’m not on medication. I’ve decided today tp stop the Entocort,as my symptoms are way worst since starting 4 days ago. I’m now going about 20 times aday,with hard core cramps ;-( I have a plan though! 4 days at home in bed,trying to sleep as much as i can,cos at night it’s impossible.Drink loads of water,broth,hydrolight and will experiment with the vit E enema today. Hopefully by resting my body and doing nothing it miht repair itself abit.. I have ordered the SCD book. Although i’m not a big fan of meat! If after those 4 days i don’t see any improvement ,then i suppose i’ll have to go to the hospital. I totally understand your fear of Humira and Remicade.It’s hard Shit that stuff!! I would try the feacal implant before that.
      TaKe care mate.
      Christine

    • Marie December 30, 2011 at 12:42 am #

      Hi, I absolutely loved Remicade and I was symptom free for four years until I developed antibodies. There is something the Dr. can give you to prevent antibodies (my Dr. just didn’t do that for me).

      I’m now on Humira and I hate it. I’m planning on trying natural remedies and in particular, I feel better when I take Fish Oil (E) and Probiotics.
      I also want to try Entocort or something else..anything other than Humira.

  2. LA Nicole
    Nicole December 28, 2011 at 3:10 pm #

    Christine! I am so with you and feel the exact same way. I am so sick right now and it’s truly unbelievable to me. I’m slowly preparing to do the SCD diet with the FAITH it will work for me, but still can’t believe that I’m sick AGAIN. I just cured this shit with diet, herbs and acupuncture less than a year ago! And when I’m healthy, I’m so healthy. I, too, can not believe that this THING lives in our bowels to create suck a ruckus. Doesn’t it love pooping well, too? Anyway, I’m losing my mind here and am so grateful for finding this website.

    Does anyone else get a flare right after a cold? I got one last November and was sick for MONTHS. I weened off all the drugs back in March of 2011, did an Elimination Diet (which was mostly based on rice products), saw an acupuncturist and a naturopath, got on some supplements and vitamins and by May I was good to go. I had solid poops and felt healthy and great up until December 10, 2011. The day of my last solid poop! On the 11th, I got a standard head cold and took some cold medicines. The poops started to get bad, I could tell my stomach was upset, but it was when the cold passed (in less than a week!) that I really noticed the colitis symptoms. I’ve been eating a low residue diet ever since, been back to the acupuncturist and am back on the herbs with no results. I’m seriously considering surgery, too – which I can’t even believe!!

    So, the SCD diet is clearly the next step.

    Has anyone else seen results from an Elimination Diet, only to see it fail months later?

    How do folks boost their immune systems so when colds cold they’re not taking down the rabbit hole, and have other people found that cold medicine will ruin them?

    I’m in the same boat…Looking at starting 2012 very, very ill. Please help!

    Thank you all so much…

    • Surfer Christine
      Christine December 29, 2011 at 4:30 pm #

      Hey Nicole, seems like we’re in the same boat! For me surgery would be the last resort…i ‘d have to be in hospital and tried every possibilities. Yesterday i tried the vit E enema with the help of a friend whose a nurse. 10capsules in distille water up the bum. It gave me relief instantly. Kinda soothed my gut,no cramping for 3 hours,i felt good.But then came bed time;another night of insomnia,cramping and diarrhea. Today is day 2 in bed.Giving myself another 2 days in bed.Yep! no Newyears eve party for me!! I will do the enema for the next 5 days,and see if it will help with the bleeding.Have ordered the SCD book online with Amazon,but it’s delayed till mid January (the joy of living in Australia!)By then i will have had my colonoscopy and see where i’m at. I’m not surprise you get flare up after taking cold flu med. Your immune system is already low,and that stuff does inflame the guts. I had antibiotics for a cystitis in oct,and i’m sure that started the trigger.On a personal level, how’s life ? I’ve had a pretty tumultuous time at home with my partner and also we’re selling our business and our house,so it’s been stressful.I’ve been doing daily yoga to counteract,but i’m sure that a lot of feelings were kept inside.. I believe 50% of it is caused by stress and emotions,30% diet and 20% low immune system.That’s my theory! But i’d love to know more about other people’s experience..Do you ever get flare up when everything’s good in your life? When things are calm and balanced and you feel at ease with your decisions and where you’re at? hummmmmmmm…..food for thoughts. Will let you know how i go with 2nd Enema today! Ps. seriously thinking of having a valium tonight.I so need to sleep,haven’t had a good sleep in 5 nights.

      • LA Nicole
        Nicole December 30, 2011 at 3:34 pm #

        Hi, Christine. Thanks so much for writing back. :>

        For me as well, surgery has always been the last resort. And I still do feel that way. But I will say that I’ve been sick now for three weeks in great pain and misery, without being able to eat anything that helps, and the herbs and acupuncture have yet to work as well. With that being said, for the first time in my journey of having this disease since 2002, I finally understand why people go for it. And though I am absolutely going to do the SCD diet by the book, I don’t want to be miserable for the rest of my life. I want to live my live again for myself, my partner and my VERY concerned mother…She just bought me a blender, a crockpot and the Gut and Psychology Syndrome book as an extra referral to the diet to help me in this next leg of my UC experience. So, I’m not going there yet – at all – but if I find five years from now that nothing is still working, and I’m in my early 40’s (I’m 36 now), I may go for it. I also read someone’s post on this site on how the body will heal better if the choice is voluntary, not due to an emergency situation. I, too, am a naturalist at heart so I’m just taking that into consideration…I’d rather choose it because I’ve had enough of the pain and insomnia and living as a disabled person and I want to make the choice of life…Hopefully, without ending up in the hospital first. Needless to say, crying out from the bathroom in such horrible anguish as I’m doing now is bad enough for myself and my love. This blows!

        However, until then, I couldn’t agree with you more. I’m waiting on my SCD book and I’m just trying to figure out what to eat, how to be, how to work, how to move forward with my goals and dreams as an actor and filmmaker in the meantime. I’m supposed to be the Production Coordinator on location here in LA on Monday and right now I’m literally wondering how I’m going to do it. How am I going to take care of myself with food and needing the bathroom constantly? This disease is a BEAR. How blissful it is to not even have to THINK about all this shit (pun intended! ha!!) when we’re feeling well. My lord! And now I know that I will ALWAYS have to remember that I have UC…However, again, I am truly hopeful that the SCD diet will work and that it will be a “cure” for what ails us. For real. A girl can dream, you know. :>

        I’m so grateful for you writing back and sharing, and to Adam and to this site. I’ve been here everyday since finding it and, even today, though I had to call out of work because I’m so freakin’ tired I can barely move, I am so happy to have come here to see that I am, literally, not alone.

        The Vitamin E enema sounds super interesting and I will add it to the list of things I’m going to try. Please do let me know how day 2 with it goes. And I, too, am not only in bed today, but planning for a super mellow New Years. All I want is to feel like myself again…This whole holiday season has blown, sadly. I was sick on my boyfriend’s birthday and Christmas was the worst…And it ain’t over yet. :>

        That sucks that you have to wait so long for the book! I’m on the site today to see if there’s any SCD intro type food that I can make for the next two days before my book arrives. I’m starving and have no idea what to eat anymore, especially since I’m in a flare. Ugh!!

        I totally need a colonoscopy, but can’t imagine doing it until I’m over this flare…Let me know how it goes for you.

        Saw the Naturopath yesterday and am now on a bunch of supplements. She said the cold really affected my gall bladder and since it’s been put to the test and not working properly, my intestines went into overdrive, hence my now flare. Oh, joy! She gave me a list of homeopathetic rememdies for handling a cold in the future. I’m happy to share them with you, if you’d like.

        On a personal level, things are good. I just need to get well in order to move forward with my personal and creative goals. I’m in a beautiful loving partnership (He’s helped me SO much this time ’round on this flare with just love, support, and the finances to see the acupuncturist and the naturopath (Yesterday, I spent $130 on supplements, none of which were on my artist’s budget!), and he’s getting ready to help me with the SCD diet. I’m very blessed. But it’s hard on him to see me so sick, and it’s so hard on me, too. I want to be well for the both of us.

        I’m so sorry to hear you’re also going through a tumultuous time at home. I completely agree with your percentages! The cold and this flare came about being stressed about gifts for his birthday and Christmas, but on the other hand I have gotten flares in the past over, seemingly, nothing…When I HAVE felt completely balanced, happy and at ease. When everything is groovy and flowing! Even this time for me, I got a cold, I got over it and I knew everything regarding the holidays would end up being just fine. Why did I have to get UC sick??? Makes NO sense to me and just pisses me off. There it is, good ‘ole UC…in good times and bad. Ha!! I know we all wish we could just be…”normal”.

        Anyway, this site is helping me manage through it so much. I’m hopeful both you and I feel relief and like ourselves again very soon.

        Please do continue to write. Seeing that someone wrote me back made me very happy. Please let me know if I can be of any assistance to you!!!

        All my best,

        Nicole

        • Surfer Christine
          Christine December 30, 2011 at 11:25 pm #

          Hey Nicole, My New years eve is in 6 hours here in Australia…It’s the worst New year’s eve EVER! You feel bad for your partner,i totally understand,but try not to feel guilty for being sick. I feel sad that my 2 gorgeous girls are seeing me so sick.( 5 and 10 years old)And it is hard on my partner. So this is my day 3 in bed, enema yesterday went pear shape as i found it too hard to do it by myself.It kinda went everywhere…So my lovely friend whose a nurse came today to help me and showed me how to use the syringe properly. It really helps i think. Yesterday i had 14 bowel movemets,today,so fat 5:30pm ,only 4. But on the other hand i started having fever 1 hour ago 38.8c. Shit!!! Tonight would be the worst night to end up in hospital!!!!! I’ll stay positive. Hey how’s the book your mum gave you.Do you recommend it? Have you checked out the website of Tom Borody (and the ‘human probiotic transplant’ or pooh transplant!) I sent him an e-mail re: cozt etc. I think it really makes sense. Not sure if any specialist in LA offer this,but worth a shot to ask. I’ve also been looking at the website :ihealedmycrohnscolitis. Some insights are good.It’s all very much a self healing approch though. God, i don’t know anymore…. I’m about to have dinner ; a hard boiled egg.Which is something Adam rave about. I know chicken soup aint good at all!! My mother in law made me a pot last night,all organic veggies and chicken.I was so sick after. Avocado seems to go down well and fresh carrot and apple juice.Anyway,stay in touch! And be kind to yourself. I won’t say Happy new year,but may 2012 be a new beginning. ;-)

  3. LA Nicole
    Nicole January 1, 2012 at 2:29 pm #

    Hi, Christine. Here’s to Renewed Health, Love and Prosperity in the year of New Beginnings!

    How are you doing today???

    None of my books or crockpot have yet to arrive, but I’m attempting to make do on hard boiled eggs, banana, applesauce, and some organic chicken broth with broiled chicken (just a little salt, pepper and olive oil) and super mushy carrots. I’m so bummed to hear you responded so poorly to the soup…It might have had some spices or stuff that you can’t yet tolerate. Damn, this disease really blows! Pun intended. I hate that on top of how gnarly it is, it is so different for everyone. What might work for one may not work for another. Hard core…

    With that, I also downloaded Jordan and Steve’s supplemental book on how to do the SCD diet successfully. You can find a link to it on this site. The first week of the diet will actually be mostly homemade chicken soup! Please download it if you can, and share your thoughts. It would be nice to be starting this diet with someone who’s going for it around the same exact time, too. :>

    I will definitely check out those websites you listed. Thank you for sharing. My energy is a little better these last two days…I saw my Naturopath and am a shit ton of supplements to help heal my gall bladder that got infected from the cold and cold medicine…It’s not producing bile well to help me digest food, which may have been the direct digestive “cause” of the flare. Anyway, I feel SLIGHTLY better the last two days (even though I’m still in horrible pain every time anything comes out of my back end, and I’ve already gone 7 times today and it’s only 1:30pm here in California). It’s slight improvement, and I’ll take it.

    Thank you for sharing your journey. I shall continue to do the same. I think avocado is the perfect food! I love it too and though I know it’s not on the Intro Diet, if it works right now, I say go for it! Whatever gets us through ’til we’re healthy again, right! Ugh. :>

    All my best to you and your family. Happy New Beginnings. :>

    Nicole

  4. Surfer Christine
    Christine January 1, 2012 at 3:26 pm #

    Well,yesterday was my day 4 in bed at home,treating myself naturally..Time has now come to go to the dreaded hospital. Hopefully for a day or 2,get rehydrated and have some cortisone. At this stage i’m going 10x a day.Pretty much just gas and blood and some diarrhea.But the cramping and insomnia has really taken it’s toll on me. Feel pretty weak and need some help. So hoping a lot of you out there are feeling better and that the start of a new year has been positive.Me,i’ll just remind myself that it will pass,and i’ll be good again!

  5. Surfer Christine
    Christine January 6, 2012 at 3:10 pm #

    Hey Nicole, how you feeling? Well, just got back from a 5 days stint in hospital! Feeling more human,going to the toilet 4 times a day now instead of 12! Still a bit of blood,not as much.Still diarrhea,but cramping less.I’m on Prednisolone 50mg a day and Pentasa 3g a day. My specialist knows my views on medications so will monitor me every week and try to cut doses weekly which i’m really happy about. I’ve also received the probiotic VSL#3, taste like shit,makes me gag,but i bet it’s awesome stuff. Also getting really good Omega 3. I was pretty anemic,so needed to have iron transfusion in hospital,which kin of wiped me out for a day,but i’m sure will pep me up in the long run.Now,i only have to remember myself to not do too much !!! Diet at moment consist of Avo on GF crackers, hard boiled eggs, veggie juice, smoothie,fish and even salad seems to go down ok! Keep in touch!

  6. LA Nicole
    Nicole January 7, 2012 at 4:49 pm #

    Christine!

    Great to hear from you. :>

    It sounds like your stint in the hospital was a good one. It sounds like you’re feeling a little bit better. Praise be!

    I’m doing alright too…I started the SCD diet. I think it’s gonna work. Although I’m still having horribly painful, mucous-y diarrhea, I was able to sleep through the entire night last night. (Can you believe it!!!) I still don’t feel like a 100% myself at all (I can NOT wait to have a solid poop! :>), but the amount of times I have had to go to the bathroom is SLOWLY decreasing. I was up to 15 times a day, and last night not only did I only get up once (to pee!), but it’s almost 4pm here in California and I’ve only gone 5 times. Incremental improvements, and I’ll take them.

    The BTVC book is a great one. I’m excited to be on this journey of health and HEALING. I feel good about my progress. Of course I wish it were faster…It still bums me out tremendously that this disease is such a game-changer and I’ve been so exhausted and all my other life plans have been on hold. BUT, I’m alive and embarking on a pretty groovy food experience…that I think will work.

    Please let me know when you start the diet! I’d love to talk with you about it!

    Until then, may be both get our rest and be well. I’ll keep you posted on my progress. I’m soon going to transition from the Intro Diet to Phase 1. I’m excited to add more foods, and to see my gnarly symptoms decrease even more. A solid poop, here I come! :> Oh, the simple pleasures…Ha!

    Oh, I wanted to share that hot baths with Ginger Bath Salts have been amazing for me. They are super hot, but I feel like I’m at the spa and I always lay down on a towel afterword, lay my hands on my belly, and meditate. It’s good stuff. :>

    And, some great news…I’m getting married. Yahoo! Outside of our definite love for one another, it also means I’ll have health insurance. It’s the States, and I’ve been without, so it’s another added lay of LOVE and protection…Something I KNOW I need…in my guts. :> Anyway, I wanted to share.

    Much Love and HEALTH to you!

    XO,

    N.

  7. LA Nicole
    Nicole January 13, 2012 at 12:44 pm #

    Christine, How are you doing?

    Just checking in with you and wanted to hear your latest…

    All my best,

    Nicole

    • Surfer Christine
      christine January 16, 2012 at 4:06 pm #

      Hey Nicole! Don’t know what happened… I’ve sent you a long message 2 days ago and it didn’t get posted?! Anyhow,I was saying a big CONGRATS on Getting married,Woohoo!!! Good for you ;-) Just make sure the organization of it all doesn’t stress you too much. How you doing? How’s the diet going for you? I’ve just received the book 2 days ago (the downside of living on the other side of the world!)
      Lots of great info,haven’t started the diet per say but have been feeling really good. No carbs,lots of eggs,fish,chicken,and salad.Have had formed stools for the last 4 days Yippeeeeeee!! I only go once a day in the morning,and no blood! I think for me the blood is a big thing…everytime i see it in the toilet it still traumatize me;you’d think i’ll be use to it by now.I saw my specialist yesterday and he was amazed at my recovery. So, slowly weaning off the prednisolone. From 50mg to 25mg for a week.then each week,will halve the dose.So should be off it in 6 weeks. Still on Pentasa for a few months. I’ve started yoga again last week. And back at work today! So all in all it’s very positive ;-) This is the first time i come out of hospital and recover so quickly.Fingers crossed weaning off the prednisolone won’t affect me. Please let me know how you’re feeling being on the diet. Take care ! ps.(as far as supplements,i’m taking a really good Omega 3 and the famous VSL#3 probiotic.)
      Christine

  8. LA Nicole
    Nicole January 18, 2012 at 3:14 pm #

    Hi, Christine!

    Great to hear you’re doing so well! Sadly, I can’t say the same. The organization of my wedding didn’t stress me out one bit. Chuck did it all while I was sick on the couch, knowing I needed to go to the hospital for the first time in my 10 years of having this disease. He’s the best. Most women have to plan the entire wedding by themselves…My man did it all on his own, and even set decorated our front lawn. He’s just amazing. :> I say all this because, unfortunately, though I initially saw some improvements on the diet (mostly energetic), I still had not had a formed stool. And last week, my second week on the diet, I took a turn for the worse and everything turned to liquid…liquid poop. Everything I ate literally ran right through me and I had my worst accident EVER while on a job. I was malnourished, extremely fatigued and scared. I knew I needed help and no tweaking of the diet could stabilize me at that time.

    I got married on Saturday at 2pm and was at the hospital by 3pm.

    I am now on a low dose of prednisone (10mg), anti-diarrhea drugs, and drugs for pain and cramping. I had blood work taken and stool samples and I’m waiting to hear if I also have a virus and/or parasite.

    I wish I could say I was doing better. Ate some mashed potatoes at the hospital and for, at least on that night, felt satiated for the first time in months. However, since Sunday morning, I have fully been SCD compliant and though I see a small amount of relief (again, energetic) from being on the drugs, I still have not had a solid poop. Still trying to tweak the diet and figure out what to do. It’s again, all watery diarrhea poop that just runs right through me and I, again, can’t sleep through the night. So tired, fatigued and frustrated. Can’t even properly cuddle my new husband because of the pain on my colon! It makes me crazy and I’m afraid I’m heading right back to the hospital unless I find a way to make a solid poop and get off this hateful roller coaster ride.

    Now that I’ll have insurance, I hope to find a new GI who is down with alternative methods and diets, but I also desperately need a colonoscopy to really see what’s going on in there. I’m still seriously considering the surgery. I can’t believe that nothing has yet to bring about a solid crap. I’m losing my mind and don’t want to go back to the hospital, but I’m so unhappy and I can’t go on living like this.

    I’m going to see my Acupuncturist tonight and will maybe get some more herbs. I’m happy to do whatever, but whatever that thing is, it has to work…And, as of yet, nothing has. This is the worst flare of my life, and once I DO get better, I don’t think I’ll ever be able to handle being brought down like this ever again. I’m not really living right now. And I don’t know how long it will take to get better. What’s a girl to do for a solid crap!!! :>

    Anyway, I’m so glad to hear you’re doing better!!! That’s just wonderful. I hope the weaning off of the steroids isn’t at all hard for you, and PLEASE continue to keep me up to date on your progress. I shall do the same…I’m so happy you were able to go back to work! That’s just wonderful!! :>

    XO,

    Nicole

    • Surfer Christine
      christine January 19, 2012 at 11:15 pm #

      Oh Nicole that is awful news…. Firstly congrat on being a married woamn now ;-) I had no idea it was that soon. I really for for you;the day of your wedding at the hospital. How long did they keep you? Sounds like you didn’t get the good care i got. I had 2 days on a drip + iron transfusion. Which really helped. Also,how come you’re only at 10 mg Prednisone? That’s so low for a flare up! You should be 50mg for a week to stop it all then decrease the amount like me. I’m on 25mg this week and 10mg next week. I feel great. And believe me i was a wreck. Sounds like your doc is not on the ball.Also, the anti-inflammatory medication stops the inflammation.I hate taking this shit,but hey,it’s way better then surgery and you know that it’s just for a few weeks.I’m on Pentasa,there is also Salofalk and salazopirin. I suggest you see another specialist. Be strong,it can all turn around in 4 days,it happened to me,and I’m not new to this.
      Take care and drink loads of water.
      Keep in touch
      x
      Christine

  9. LA Nicole
    Nicole January 25, 2012 at 2:54 pm #

    Thanks, Girl. We were planning on marrying in the Spring, but I have been totally uninsured so we moved it up fast so that I could be on his insurance. A huge act of love, for sure.

    I was only in the ER and not admitted over night due to my vitals being stable and good. They took blood work and stool samples, gave me an IV drip with saline, the prednisone, the anti-diarrhea drugs and the pain and nausea meds. Partly why I’m on such a low dose of prednisone is that I can’t handle the drug. It makes me crazy and it’s not worth it for me to trade out one evil for another.

    I’m now, actually, on 20mg of the prednisone, just started Apriso (mesalamine) AGAIN today and am hoping for better results than last time. This is now after seeing a new GI. When I’m on a high dose of prednisone, I feel totally angry, out of my body and insane. Am trying to do this in a way that still keeps my naturopathic needs in mind. Am hoping that the Apriso will help in ending this flare, but am also aware that since mesalamine did not work for me last time (one year ago, to be exact) that I may be heading towards the Big Guns, like 6MP. And I’m just trying to be okay with it all because, in all honesty, my choices are now so limited. I’ve been WAY too sick for too long. Just yesterday I had a HORRIBLE accident at work. What a debilitating disease. So at this point I, too, am willing to go back on the drugs.

    Thanks for writing back. I hope you continue to do well. I’ll keep you posted on my progress. Some of these drugs are so long term that it makes me so sad! But, I know we must do anything to regain our health and I’m willing to do it for myself and my loved ones.

    I hope all is well with your family, too.

    XO,

    N.

  10. JANE February 19, 2014 at 6:30 pm #

    Hi Christine,
    I hope you are well. Did you ever end up having the FM transplant? Curious as i am interested in trying .
    Also i am a fellow northern rivers girl & was wondering if you mind telling me who the Kinesiologist was you saw & any other practitioners you recommend in the area?
    Best wishes Jane

Leave a Reply