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Child (12y old) treatment recently diagnosed with UC

Posted , 3 users are following.

Robert.
Robert.

Hi,

Apologies for the length of the post below but I think the history might help others and also might help answer the question I have.

My daughter was recently (Jan 2017) diagnosed with UC after many years of frequent bowel movements and bloating which developed into a big flare-up in Oct 2016 with terrible cramps and frequent (5-6 times a day) trips to the loo. The calprotectin tests carried out for the previous 2 years showed levels were around between 500 and 2000. After an MRI that showed inflammation of the bowel which lead to a colonoscopy and endoscopy to confirm type of IBD. Biopsy confirms pancolitis. Same day as the colonoscopy she was admited to hospital for 5 days for a blood transfusion and start treatment with antibiotics, prednisolone 60mg reducing 10mg every 2 weeks and mesalazine (Pentasa) 3g. After 3 weeks she was admitted again and spent another 5 days as started bleeding closer to the stomach, probably linked to the treatment as she wasnt taking anything to protect the stomach. Between the two hospital trips symptoms disappeared completely and almost immediately so appeared as the treatment was working well and no apparent side-effects until she felt unwell two weeks later with headaches, vomiting and very dark watery stools. After the most recent hospital trip, they reduced the prednisolone to 40mg continuing with the reduction every 2 weeks. Reduced the mesalazine to 1g twice a day (2g/d). She has been doing very well with no side effects (at least none that we or her notices) and the stools are the best they've ever been for her entire life. We think that the second trip to hospital was due to not being given Ranitidine or Omeprazole or similar and that she also took Rennie to help with the acidity which from what we've read later causes the mesalazine to be released further up because it makes the intestines alkaline (at least that is what we've read but would explain her symptoms), so do not use Rennie if you are on mesalazine (Pentasa). She now has Gaviscon (or cheaper alternative) when she needs quick stomach relieve but not taking it very often and just as a preemptive measure after big meals specially with tomato sauce.

Since being a baby she had bloating when she was diagnosed with toddlers diarrhoea, and over the years through diet we were managing her symptoms as we thought it was food related (intolerance as all allergy tests were negative). Once we stopped wheat, her bloating disappeared the the bowel movements were about twice a day. All was well until about age 9 when she had very light bleeding that lasted a couple of trips to the loo. This was like until she had the flare-up. The bleeding would occur every couple of months although sometimes she went almost six months with nothing. During the 2.5 years that she was being assessed every 4 to 6 months, she was mostly asymptomatic which is why the colonoscopy was delayed until she had the flare-up.

The question is that she has now been given Azathioprine as she tapers off the steroids. From what I've been reading the Azathioprine is quite strong with some really bad side-effects. Given that she responded almost immediately to the current treatment, we were managing the condition until the flare-up through diet and now she is the best she has been, we are included (daughter included) to just carry on with the initial program of finishing the steroid treatment and carry on with the mesalazine longer term as it seems to be good for the cases that tolerate it as a maintenance drug. The concern of the consultant is that as she moves off the steroids she could have a relapse. We want to wait for the results of the latest calprotectin and blood tests to confirm all is normal before taking anything new. Also she hasn't been scheduled for weekly blood tests which from what I've read are common when taking Azathioprine to make sure the liver, kidneys and other organs are not being negatively affected. Given her age and likelihood that she will have to take it in the future, we feel we' d rather wait and take it as an alternative to mesalazine if and when it stops working.

If anyone (or family members) has had similar experiences, your take on taking Azathioprine would be much appreciated.

Thanks

Rob.

P.S. The NHS consultant and hospital have been excellent and very responsive to her treatment and our concerns so can't thank enough all their help to date.

 

0 likes, 4 replies

4 Replies

  • sheila91262
    sheila91262 Robert.

    Posted

    So sorry to hear your story, so difficult when the person is so young. I can't help much as my son was 27 and had UC but he was on steroids starting with high doses. Two things I would mention from our experience. Steroids are a risk factor for sepsis, something which is currently in the news. This means that the immunity for infection is reduced because of steroids so if there is an infection then it can take hold and become serious quickly. Lots of info online, learn the symptoms so you are forewarned. In our experience the GP doesn't even mention it. Also IBD sufferers are more prone to DVT so that should always be taken into account if ever surgery is required and for long hospital stays.

    The Crohns and Colitis Charity are informative and they have a facebook page with many followers, some of whom may share your experience.

    At some point I really hope they have better medications that don't have such difficult side effects.

    I wish you the best of luck. Sheila.

    • Robert.
      Robert. sheila91262

      Posted

      Thanks for the info and wishes.

      I wasn't aware about a DVT link. Also forgot about lower inmmune system while on steroids sad Will check for the info on the symptoms on that.

       

  • susan260867
    susan260867 Robert.

    Posted

    Hi

    I took aziothiapri and luck didn't suffer with anything else, although blood tests showed my white cell count was low so I didn't have much of an immune system.

    Also be aware long term prednidolone use is not a good idea. I ended up with a cataract in each eye. ) but don't panic I mean after years of use and not short term like your daughter)

    Try different things like the prebiotic drinks you can buy from the superset - they will not interfere with medication and may help. Also many small meals rather than few large ones

    Also I saw a hospital dietician who was very helpful ie if she ever gets prescribed iron tablets do not take with tea or coffee but with vitamin c. Aloe vera is recommended to be good as well. I know I've gone of the subject of York question but can only imagine it must bev ery unpleasant to say the least for a 12 year old and for yourselves as parents and am trying to offer any helpfully tips that I can render from my own experience

    The main one is that you see your daughter and how she is doing so don't just change to a different medication because the consultant suggests, keep on asking questions.

    On another note I believe that nacc the national association for chronic and colitis have support groups for under 16s it maybe worth looking on their website and seeing if there is anything usefully. Apologies if I am suggesting things that you have already done. I believe messalazine is considered to be one of the single treatments for uc and would try and stay on that as long as possible. Best wishes to you all.

    Regards

    Susan

    • Robert.
      Robert. susan260867

      Posted

      Susan thanks for the all info. We'll check the NACC group out and will continue to ask questions rather than just take any medicine/drug blindly.

      After doing a lot of research and talking to someone that has Crohns, we've decided to not take the Azathioprine and complete the 12 week treatment of the Prednisolone (steroids) but carry on with the Pentasa (mesalazine) as she seems to tolerate that ok and has fewer side effects. The person we spoke to, said they do a juicing diet for 5-7 days every 2 months to give the bowels a rest and recover if they need to. Doing this with a balanced diet, they've managed to avoid flare-ups for quite a few years without having to take any drugs of any sort so fingers crossed this also works for our daughter.

      Lets hope they find a medicine soon with very few side effects and not major like some of the current treatments.

       

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