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Need some Information/Advice please?

Posted , 6 users are following.

twinny-brankz
twinny-brankz

Hello, I'm just after information about how many different sets of drugs are avaliable for IBD and how often peoples medication changes?

I was diagnosed about a year and 4 months ago and after the colonoscopy that determined I have Ulcerative Colitis I was told to take Octasa and Prednisolone(for a few weeks), after about 3/4 months I was told to take Azathioprine as well as the Octasa and sent on my way again.

Last month I was told that the medication doesn't seem to be working and had another colonoscopy as they wanted to put me on Biologics.

After that colonoscopy the surgeon that did it said she was prescribing me Pentasa Suppository's as I only had 10cm of inflammation and I should be fine. After two weeks on them I started having some trouble with movements and after speaking to my GP (phone) I was told to take steroids again for 2ish weeks just to bring down what he concluded was a flare up. 

Then I was finally able to speak to my IBD nurse and was told to carry on with steroids until my appointment next Wednesday but after speaking to the surgeon that did my colonoscopy, its more than likely I will go onto Biologics because even though there's only 10cm inflamed and i was told i'll be fine she's been told its pretty bad...

I'm really really fed up as I feel like this is the last set of medication that will do something before the surgery/bag option and im petrified of needles.

Anyone got any advice?

Thank You! x

0 likes, 8 replies

8 Replies

  • donclaudio
    donclaudio twinny-brankz

    Posted

    ...want you to use google scholar, pub med, science daily, or plos one for "New biologic therapeutics for ulcerative colitis and Crohn's disease".

    Then follow up using same search engines for "n-3 PUFA Colitis"

    If "I" were in this condition, I would immediately begin a course of n-3 PUFA (omega 3...FISH OIL EPA 180mg DHA 120mg...2 to 3 times daily.

    I consider a terminal patient by the name of Olly in southampton to be spot on re inflammation...moreso in neuro than digestive but they overlap...he says curcumin targets inflammation in even fungal infections ...worth a shot IMO...the difficulty he also states is getting it to the target area....my guess would be fresh organic tumeric along with a theracumin supplement?..again a guess.

    Claudio

  • bob1234
    bob1234 twinny-brankz

    Posted

    I am afraid you will have to get used to needles. It goes with having IBD.

    I look the otherway. I say if its hurting.

    4 months is not a long time with IBD.

    I won't sugar coat it. IBDs are life changing and I understand your fedupness. New word I have invented.

    However don't dispair instead do stuff.

    At the moment I am learning a song called walk like a man, by Franki Valli. Plus repairing a beat up old guitar. I have no money so I hand make the bits.

    Keep Happy and carry on regardless.

    Bob.

  • donclaudio
    donclaudio twinny-brankz

    Posted

    T-B,

    There are many medications that target IBD...they are usually classified into 3 groups....

    The Alternatives are quite a few...some of them have scientific studies, ...if you would like the "medication"  listings...you need to pm me as previous postings have been censored...btw...The biologic that  begins with an H  seems to be the better of the group but  a lot of intolerances in this group.

    I hope these alternatives will post: (protocols vary, and in several 2010 to 2013 IBD forums some complete remissions...but most claimed major symptom improvement with occasional "flare ups".)

    elemental diet

    Probiotics

    Psyllium husk, psyllium seed...jerusalem antichoke (alternating)

    EPA/DHA

    D 3, K2, sublingual b12

    L Glutamine (both ways oral and enema)

    Milk Thistle

    Slippery Elm

    I may have missed some, will need to go back to some of my 2012/2013 papers..

    Claudio

     

  • JonWHut
    JonWHut twinny-brankz

    Posted

    My UC came out of the blue, within a week of being told I had it I was rushed in for an emergency op to remove my entire colon. I ended up with a stoma for about 18 months then had a reversal, which hasn't really worked.

    I have had numerous courses of steriods, suppository's and mesazaline, none of which really seemed to have helped. I'm now looking at going back for another op to get the stoma back again.

    My GP's have tried lots to try and calm the proctitis (the stump I had left) to no avail, so you are not the olny one who's medicines haven't really helped.

    Having the surgery isn't the end of the world and you'll probably see you life pick up afterwards as you won't have the worry and stress as well as potentially more control.

    Don't panic and worry, there's plent on here the same and its good to share your fears!

    Take care

    John

    • sheila91262
      sheila91262 JonWHut

      Posted

      Hi John, I'm amazed we haven't come across each other in forums in the last 6 months.

      My son aged 27, developed UC from nowhere and was at first treated well by steroids and immuno suppressants but he had a massive flare when he reduced the doseages. He had last ditch treatment with Infliximab but while he was in hospital he perforated and had emergency surgery and an ileostomy so ended up with a stoma. He had a j pouch in 2 stages at John Radcliffe Hospital Oxford so the last part of the bowel was removed and pouch made. He had last key hole surgery to remove stoma and attach the pouch. He came home and is doing well. He was told the 'last bit of bowel' would be removed as it had UC symptoms and was prone to cancer even if he kept the stoma and didnt have pouch surgery. In what way was your surgery different? We went to JR hosp in Oxford as they are the best along with St Marks London.

       

    • JonWHut
      JonWHut sheila91262

      Posted

      Hi Sheila,

      My surgery wasn't quite the same. My diagnosis come completly out the blue and I had surgery to remove my entire colon. I had a stoma and all was left was the last 20cm of my rectum to allow re-joining (or this is how I understand it).

      14 months after the removal I had it all re-plumbed as I call it and reconnected. I was told that there was a chance that the ulcerations could return, which they have. The biggest issue was the frequency of trips to the toilet. Normal day 12-15 or sometimes up to 20 when I had a flare up. it was the urgency that was the biggest problem...

      Following a colonoscopy in Feb this year my rectum is full of ulcertations so I'm trying some different treatment at the moment with a gasto specialist to see if this helps. Bit of a last throw of the dice I think as if it doent work then I want the surgery for a permnament ileostomy for some life quality.

      I was treated in Lincoln. Didn't have to much choice as its my local hospital and after being blue-lighted there I wasn't in any fit state to dictate where I went to.

    • sheila91262
      sheila91262 JonWHut

      Posted

      I understand better now but it seems that there is a variation of ideas and styles according to the different hospitals and consultants. There are also different forms of pouches that are suitable for diff sorts of diseses etc. You still have the stump which is the part my son had removed at JR hosp because of the possibility of cancer later on. As his original ileostomy was at a general hosp he was told he needed that part left so reversal was possible. JR left the rectal muscles but removed the stump so in the last 6 months he has been UC symptom free and had no flares as no disease so drug free. All great.  Now he is "attached" and sitting down to use the Toilet, great.

      You can get a referral to a specialist hosp from your GP. JR Oxford and St Marks London are the Gold standard and we certainly couldnt recommend JR any more that we do, they treated him as a young human being with feelings and the treatment was brill.

      Before you make the final decision take time to talk to the experts, the definition of permanent and temporary ileostomy is a variable that needs to be investigated because it change from place to place.

      winkHope this helps, good luck.

       

  • bob1234
    bob1234 twinny-brankz

    Posted

    A notable feature of colitis is that its an individualistic disease. So another idesl meds and regime may not work for you. To compund the problem the meds that seem to work stop working due to the colitis changing.

    I have found that writing to my GP

    works best I keep a log and use this to explian in detail with out missing stuff out.

    She then gets in touch with experts for advice.

    Bob

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