Evil UC – Part Two

Introduction:

Hi all fellow ucer’s, this is my 2nd vent in as many months, I am 48, a amother of 3 and a nana of 1. Have lived with this hell of a illness for 10 years. I want my life back, but then anyone reading this will know that’s all any of us want.

Current UC Symptoms:

Started back in July on holiday in Spain, still suffering now, hasten to add recently stopped smoking!!!!!!!!!! So usual symptoms you experience during flare time all of them awful and scary.

I am wondering seriously if continuing smoking really does keep colitis at bay.

I stopped smoking in April of this year after smoking 30 years, and by July I was in full blown flare. Hospitalized twice on iv steroids, however i am steroid resistant so they say as i had no response and only got worse. My second siggy was far worse than my first one even after weeks of high dose evil steroids, i really can’t tell you how rough they make me feel. And even though i am resistant i have to still do the stupid taper off, cos it’s dangerous to just stop.

Has anyone ever just stopped???

Anyway, after lengthy talks with the poop bag nurse surgery was looming and i would have the ileostomy, the thought of emptying a bag of liquid 6 times a day including during the night filled me with dread, does anyone have one, and how do you cope with it?

At the eleventh hour my consultant decided we could try infliximab which has a 1 in 3 chance for uc, its better in Crohn’s. I mulled over it read the literature and really almost refused it, drugs, drugs, drugs sick of them, Anyway they talked me round, and I had my first infusion with hesitation, had to have the flu jab, more drugs!!!!!!!!!! I have however seen changes already but there are no guarantees and they say it can fail on the second or third infusion, guys i feel for all of us living with this illness, i feel like i am existing never living.

I have started taking probiotic acidipholus too and making fresh soup daily, no bread, all i want is fish n chips, curry, chinese, once in a while like everyone else, I can’t even do my much loved jogging or spinning cos i have zero energy and the steroids have made me gain 16 pounds even though i am eating less, this illness is pure evil.

Where I’d like to be in 1 year:

Happy, healthy, and possibly in love. no drugs at all !!!!!!!!!!!!!

Colitis Medications:

pred steroids, 4 mezzavent, calcichew, and infliximab in hospital via the drip feed every 2 weeks

written by Julie

submitted in the colitis venting area

————————–

“Hey Julie, if you haven’t already, you should take a look at the Remicade/Infliximab 35 patient survey we conducted here on the site a short while ago.  There’s lots of great information within the survey answers and it’s there for you to take advantage of reading.” – Adam Scheuer

Here’s the link:  https://www.ihaveuc.com/remicade-infliximab-reviews-and-survey-for-ulcerative-colitis/

————————–




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.

infliximab

12 Responses to Evil UC – Part Two

  1. Graham from England
    Graham Lee November 13, 2012 at 7:26 am #

    Hi Julie,
    I can’t help you with the steroids or surgery but if you haven’t read my post on Olive Oil then please do. No drugs here only a smooth transistion from cigarettes to a healthy alternative.
    Be well,
    Graham

  2. K November 13, 2012 at 5:02 pm #

    Hello Julie,
    Your questin abut “the bag” is a perfect lead-in. Yes, I hve had one for 37 years. It is the only reaosnI am alive. It is ok, it just is.
    I was diagnosed and hospitalized with uc on a Wednesday (during which I now realize was a bad flare). On Friday a surgeon came into the room and explained what surgery they might have to do, on Saturday morning the colon perforated, and on Saturday afternoon they took it out.
    So after thre days with the diagnosis, I was cured of uc. And of course, I have never takne meds for it. I eat what I want.
    I empty it 8 or so times a day/night, and change it every 4th morning, and just get on with things.

    • K November 13, 2012 at 5:09 pm #

      oops, the submit button got pushed before I had a chance to proof the above. sorry!
      Just wanted to add that I have been reading this website for several months, and anyone living with uc for just one day has more sheer courage than I have.

  3. shelly in maine November 13, 2012 at 5:15 pm #

    Julie,
    Also read the stories by Blake, etc under surgery. His is the most complete and detailed and will help you learn more about it. This too will empower you to have this discussion with your doctor. It has helped me to discuss with both my primary care and GI and to know they’ve got my back since there aren’t very many surgeons that specialize in this where I live…if any!
    Please read up on as much as possible. Probiotics.
    Good luck with the meds.
    Best, Shelly

  4. bev November 13, 2012 at 5:37 pm #

    A good 50 billion+ probiotic…and L-glutamine to stop the bleeding. Every day.

    ***(I have not tried Graham’s olive oil because I am doing so well…but if it works…do that instead!!! That would be even easier than my regimen).***

    Give them both time to work…although for me, the probiotics took only about a week, and the L-glutamine stopped the bleeding in it’s tracks within a day!!

    No more meds for me, either…ever again!! They don’t ‘cure’ the problem. We have to actually HEAL the colon.

    Cheers:)

  5. Erica November 14, 2012 at 2:53 pm #

    Hey Bev,

    Could you specify brand of both probiotic and L-glutamine and how much of each….thx so much. Enjoy your post. :)

    • bev November 14, 2012 at 5:24 pm #

      Okay Erica…here I go again…lol

      I take one ULTIMATE FLORA CRITICAL CARE (by RENEWLIFE) probiotic capsule first think upon waking. Nothing else im my tummy except that and water.

      Before I eat lunch, I take one or two scoops of fermented unflavored L-glutamine powder (the brand is NORTH COAST NATURALS and the scoop is provided right in the tub of it) in some juice and drink it.

      I also take one 4mg capsule of astaxanthin and 4000 units of generic vitamon D. Both of those I just take for inflammation, as they are natural anti-inflammatories…in case I have any inflammation!! This UC disease has to do with inflammation as well as not enough good flora (probiotics), they say, so I take these two things just for ‘insurance’. I take these two things right after I eat lunch, as they are better absorbed with fat, apparently.

      Cheers, and thanks for asking!
      Bev:)

  6. bev November 14, 2012 at 5:25 pm #

    first THING upon waking…not THINK…geez…typo!!

  7. David November 14, 2012 at 5:35 pm #

    Hi Julie:

    I`m a non smoker so I don`t know if smoking has an effect on UC or not. I did the Infliximab (Remicade)infusions for about 8 months. They seemed to help for awhile and I even thought my UC was in remission. Then I started to flare again and my body no longer responded to the Remicade. My GI doctor said that the antibodies in my system were essentially attacking the Remicade. My doctor switched my to Humira and I`ve been doing the injections for 12 weeks now. There again the Humira seemed to be working for awhile and now I`ve been flaring up again. The Humira doesn`t seem to be working anymore. I`m 59 years old and have had chronic UC for 6 years now. I`ve been through all the meds, steroid and non steroid plus the biologics. I`ve tried more natural methods with diet, healthy foods, supplements and probiotics. Nothings seems to work for me. I don`t think remission is possible with my chronic UC and given my family history. Yesterday my doctor said that we`re running out of options and started talking about surgical options. I`m meeting with a surgeon in a couple weeks to discuss either the J-pouch or the full colon removal and external ostomy. I hate the thought of having life changing surgery and living with a bag, but I`m giving it more serious thought now. I`m so tired of the drugs and the toll it`s taking on the rest of my body. I think I getting close to going ahead with it and getting my life back. This website has help a lot to read other peoples experiences and what they`ve gone through with this dreaded disease. I know there are many people who have said that having the surgery is the best thing they`ve ever done. One of my co-workers father has had a bag for 30 years and he just had his 90th birthday.

    I hope you will have better luck with the infliximab or any other treatment you chose to fight this disease. Hang in there and best wishes.

    David

  8. julie November 14, 2012 at 8:55 pm #

    Hi all,
    Thank you all of you for your response, it’s nice to receive feedback, it’s comforting. I wish they could find a cure for this horrible illness, I was talking to a guy in hospital whilst having my 2nd infusion, he has been in flare on and off for almost 5 years and has been on steroids the whole time OMG, he walked with a stick cos the steroids have thinned his bones and had lots of other contributing factors, POOR GUY. It makes me wonder why a doctor would keep someone on steroids so long, i personally will never ever take them again, anyway guys i wish you all the best and i hope we all find solace someday soon, some are luckier than others but that’s life x x

  9. Erica November 18, 2012 at 6:53 am #

    Appreciate you Bev! You’re the BEST!!!!

    • bev November 18, 2012 at 8:21 am #

      You’re pretty great yourself, Erica!

      xo

Leave a Reply