Just Another Flare…!

Howdy folks,

So, I think I’ve had UC since I was about 11 or 12 (I’m 33 now). After many attempts, a doc finally took it seriously and so was diagnosed with either UC or Crohn’s in 2007 – doc didn’t think it was too important which is was which I found odd at the time. He recommended steroids and Asacol which I didn’t take – figured I had gotten along just fine without them until then.
Then last year while in Switzerland on holiday, I had a pretty bad flare which wound me up in hospital. Had another scope – still didn’t know if UC or Crohn’s. Started Prednisone and Asacol – tapered the Pred after 3 months and stayed on Asacol – 4.8mg/day which I eventually tapered off to 3.2mg which is the only thing I’m on at the moment. Was fine for almost a year. Went into my consultant on 8th Dec – took bloods – nothing showed up. Only 2 days later, another flare started… isn’t it odd that nothing showed up in my bloods from 2 days previous??? Anyhow, could only get an appointment for some weeks later so I went in a couple of days ago – they weren’t suprised that nothing showed in my blood tests… and when I pressed them asking which form of IBD I have, they didn’t seem too pushed. Was really blasé about the whole thing… that it “didn’t matter really if it was UC or Crohn’s” – well, it matters to me. They’re sending me in for another colonoscopy on Monday (in 2 da ys) to investigate further, but are talking about putting me back on Pred, adding Asathioprine (Imuran) – really not up for that! I’ve been on the SCD for last 2 weeks – didn’t do the starter diet though as it seemed really challenging…

I guess I’m just really frustrated at the moment… I find it strange that the consultants aren’t too interested in whether it’s UC or Crohn’s… what do you think? Also, only 2 days after a flare started, shouldn’t some kind of inflammatory markers have showed up in my bloods???

I really don’t want to go back on steroids, and really really really don’t want to start Imuran… just don’t really know what to do.

I’m frustrated that doc’s just want to suppress the condition and not figure out why this is happening… it’s just all drugs, drugs and more drugs. I’m not a believer in “drugs for the rest of your life” type advice that I’m getting from my doc.

Any advice would be REALLY appreciated!!

Thanks in advance,
Dee from Ireland

Medications:

Past – Prednisone – 50mg slowly tapered to 0g over 3 months. Asacol – 4.8mg/day
Present – Asacol – 3.2mg/day
Future – doc looking to put me on steroids to get over flare, and start Imuran (foreverrrr! – bah!)




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asacol, imuran

5 Responses to Just Another Flare…!

  1. Ashling January 22, 2011 at 5:07 pm #

    Hi Dee,

    I was diagnosed with Crohns but UC first.
    My Doc had no clue what was wrong with me for a long time and as you said they aren’t pushed on weither its crohns or UC I was on the imurane but didnt work and never agreed with me I am now on INFLIXIMAB which is great. It’s an injection you start off with one injection then two weeks later another then four weeks then six weeks then every eight weeks till your doc says so your insurance or medical card will cover it (I think with the medical card there is an excess fee of 75 euros) But it does wor, now it took a while for me to notice it but my family and friends could see a big difference in it think after the 4rd or 4th time. Maybe look into it. My consultant is Prof Frank Murry and he is the best. He is based in Beaumount private but has a day clinic in the hospital itself and again the day clinic you can get through your med card for free to see him privatly is 100euro.

    I hope I helped in some way and I really hope you feel better soon.

    All the Best
    Ashling

  2. moxie January 22, 2011 at 8:56 pm #

    Hi Dee:

    My only advice, if you don’t want to be on drugs for the rest of your life, is to try the SCD. But, it’s important that you start with the intro diet. The first time I went on it, I was symptom free within a month. I was on the diet for a year and then slowly tapered off. About a year later, I flared again and so I went back on the diet starting with the intro diet. The intro diet is pretty boring but at least you only need to be on it for 3-5 days. As time goes by and you start healing you can add more and more foods. There are some great SCD recipes out there as well as cookbooks. Yes, you do need to be prepared to put some work into it, but I believe it works if you follow it correctly. It is definitely worth the sacrifice. With this current flare, it’s taken me more time for the diet to work and so I’ve added a few supplements like L-Glutamine, Serrapeptase and a probiotic to help with the healing process. It’s been a little over two months, but I’m finally starting to get back to normal. Once you get the hang of the diet, I think you’ll find that it’s not that restrictive and you can eat really well. I love food, so I can tell you that I don’t feel deprived. The most challenging part for me is dining out or traveling. But, I’ve managed to do quite well nevertheless.

    Hang in there and good luck.

    Moxie

  3. Lauren January 24, 2011 at 7:24 am #

    Hi Dee,

    You said….I’m frustrated that doc’s just want to suppress the condition and not figure out why this is happening… it’s just all drugs, drugs and more drugs. I’m not a believer in “drugs for the rest of your life” type advice that I’m getting from my doc.

    I totally agree, I feel exactly the same way. Doctors treat the symptoms’ rather than the cause; they are still not 100% certain it is an auto immune disease; they’re not sure what triggers UC and why our immune system suddenly goes berserk and attacks our own body. I’ve done so much reading and research on the disease and it baffles me how in spite of having so many advances in the medical profession, UC is a disease in which advancement is far behind.

    I also had the same problem with my doctor initially not being able to distinguish if it was UC or Crohns, because the symptoms are similar in both when Crohns occurs in the colon, and are treated the same way.

    I’ve found probiotics to be helpful, they ease a flare and speed up recovery. Though I’ve never been in full remission unless I get on Pred (and only temporary remission), the probiotics ease the flares a little.

    I haven’t tried SCD but I am going to give it a go, others have had much success with it.

    Good luck with it,
    Lorenz

  4. Dee from Ireland January 25, 2011 at 7:54 am #

    Hey there,

    Thanks a mill to all the replies. Just had another colonoscopy yesterday, so will see what the results from that will be.

    I’ve just started the SCD Intro Diet so will see how it does and then progress to the normal SCD in a couple more days.

    Thanks again for all the replies – great to know you’re not alone out there with this thing…
    Dee

  5. :) March 8, 2011 at 10:34 am #

    Way to go dee!!!
    This stuff is all quite new to me too.Im going to try and give the scd diet a go. I just feel like it will cut out a lot of things in my diet though.
    One thing I am curious to know why the doctors keep doing colonoscopies so frequently on you?
    ttys

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