How long can a flare up last during colitis

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Hi..i was on this recently about my 18 year old son who was recently told may have colitis, but only thing was he wasnt loosing weight...now he is...how long can a flare up last....im worried sick for him as he is a talk healthy lad and now this is having a horrible affect...and Im helpless as a mother...please can someone give me some advice

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  • Posted

    Hi Carol

    Everyone with UC is different I'll give you my opinions based on my own experiences.

    Last August I started bleeding when I went to the toilet.. I left it as j was too scared (so silly) things got progressively worse.. I was losing weight and I had so much blood and mucus in my stools.. I had no idea at the time this was a "flare"

    By the time I booked my doctors appointment they arranged a series of tests including a flexible sigmoidoscopy.. I was diagnosed with moderate / sever UC!

    Never even heard of it.. This was in January of this year

    To this day I can honestly say my weight fluctuates.. One week I can loose 7lbs the next it's back on!!! I can't explain...

    I still bleed every day and trying to find the right medications for me!!

    Since Friday I have been completed constipated and in agony all weekend.. Stabbing pains you name it! I got an out of hours appointment and was have a prescription to make me go to the toilet.. I never knew people with UC could get constipated!!

    The thing with this is each and every single patient is different,we respond to different medications and some meds can tKe months to work! I've heard of people only being on meds for a month or so and their symptoms disappear

    Please don't get scared.. He will be ok and I'm sure your looking after him.. Just try not to worry.. My mum and dad worry about me and I'm 29!! They are more worried than I am I think it's because they are helpless and can't do anything.

    Stick with the medication and you'll both get there!! Keep your chin up mummy xx

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  • Posted

    Hi Carol

    Like Millie said everyone responds differently to the medications and either have diarrhoea or constipation I had both but then when my flare happened it was severe diarrhoea for 9 months every day from 20-10 times per day I had to be near a toilet at all times it was horrible for me I had to have surgery in September this year but I did all my homework tried numerous medications from my doc and exhausted every alternative before surgery reason why it went on for so long as they said to me after 4 months I needed to go to hospital. But with a new born baby it wasn't what I wanted but in the end I was so ill I just couldn't cope. Still have faith where I had this for 11 years and managed well for 10 of them.. And even after surgery I have no regrets life is so much better now X I wish your son better and believe it will be ok X

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  • Posted

    Hi Carol, sorry for both of you, it can be a hard and painful disease. My son was diagnosed in Oct 13 age 27. He was very fit and healthy and sporty and never ill. He was diagnosed as having  severe UC,I have written about his experiences on here.

    My son was one of the unlucky ones who ended up having surgery almost straight a way. We have learnt lessons though which might help. He was seen by Cons at local gen hosp. Big mistake. He had started on steroids and anti inflammatory, Mesalazine given by GP, stopped losing blood and mucousy diarrhoea and regained appetite and weight. Thought ok we can do this, but as GP wanted him to reduce steroids as can be harmful, he put him on a reducing doseage and all symptoms came back and more. Emergency appt with Cons who said go back to prev higher dose and if no better will need to be in hosp on drip to hydrate and get drugs into system via blood not gut as prob not absorbing well. Come back in 14 days if no better. He made 10 days and then went into A&E close to death as body shutting down due to dehydration and malnutrition and anaemia, drugs not working as prob not being absorbed. One of the probs with UC is that the drugs and food pass thro v quickly hence the feeling of being v unwell. He had stopped eating as it hurt and was bleeding lots, in excess of 15 visits to loo a day. Beware young men can be v stubborn and don't always tell you what is happening, especially their Mums. His friends were so concerned they drove him to hosp.

    Like you we knew nothing about UC, but knew a friend with Crohns who had had several operations. Steep learning curve. Look on line on here for patient info and contact Colitis and Crohns Charity for info.

    In hindsite the best decision we could have made would be to have got a referral to St Marks Hosp London via GP, or John Radcliffe Oxford, both NHS. They are the gold standard for IBD. I don't know where you are in UK but these are the best that I know , there maybe one or two more that your GP can tell you.

    I was so scared too as it comes as such a shock. The symptom severity and types of appropriate meds and doseages are hugely variable. Some patients find rectal meds do a better job than oral, or a combination. I think we didn't get enough advice or the correct meds at first and everyone was taken aback by how quickly he went to serious illness so that he didn't have chance to heal from the first flare. He was one of the unlucky 1/3 who don't respond well to the meds.

    He had his colon removed and had a stoma which he covered with a bag to go to the loo. He healed from that and had a reversal op at JR Oxford after 12 months. He is now fit and well and his internal J pouch allows him to go to the loo and live normally. He has no disease left.  I don't want to scare you but things can go wrong and awareness is important. Ask as many questions as you can when you see the Docs. There are new meds being developed and some patients can have v few flares and go for years without too many problems.

    One key piece of info, people with IBD are up to 3x as likely to get a DVT after surgery or long periods of immobility so need blood thinners. My son didn't get the blood thinners and developed  a major DVT after coming home after he had recovered from surgery. Not good and annoyingly preventible.

    I wish you the best of luck. Many people have written their stories on here and have had years of controlled symptoms, some have improved through diet changes. We don't know at the beginning how things are going to work out but I think I would have felt more confident if we had been at a better, more innovative hospital with more experienced medical care.

    Keep in touch.

     

     

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    • Posted

      Hi Sheila,

      I know this was years ago but I am hoping you get the notification still.

      Would it be possible to contact me? I'm 25, currently waiting diagnose of presumed UC (had sigmoidoscopy so far and have been on mesalazine for 3 weeks), but currently having my second flare up and it's the worst it's even been. It has been over a week now and i'm not eating and going toilet 25+ a day. All the points you mentioned I can relate to, so would be very interested in asking a few questions?

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    • Posted

      Hi, if I can be of help then ask, do get a second opinion via your GP to London or Oxford as above if that helps. 

      Go to A& E if going to toilet so often as can be very dangerous. Hope things improve soon. The Crohns and colitis facebook page is useful.

       Sheila.

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  • Posted

    Hi Carol, sorry to hear your son is suffering. Unfortunately it can take a while to get over a flare but everyone's different and we learn to be patient. What meds is he on and have you tried probiotics?  Personally I think a combination of oral and rectal meds calms the flare quicker but be very strict on sticking to the prescribed drugs. Most of us lose some weight when flaring but put it on again when we feel better so don't worry. You can also use Turmeric and an anti imflamatory diet to help. Hope this helps x
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  • Posted

    Just been reading these post I was recently diagnosed with UC and I can relate to all the post. Medical professionals weren’t helping I think this is mainly because it is a grey area for them and they don’t have much knowledge on IBD. I was going through a really tough time looking for answers and I can honestly say after watching this video it helped more than any other doctor had helped me and I am sure it will do the same for people on this post. 

    Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

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  • Posted

    Has anyone survived a flare without medication? My insurance doesn't cover much.

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    • Posted

      Yes Mama, and I hope you get this.

      I went through a 2 year flare after having my baby and I stopped the symptoms by taking purely herbal remedies. This allowed me to live normally and without so much pain and discomfort.

      Hyperbiotics Pro-15 Advanced 1x nightly

      Vimerson Health Turmeric and Ginger 2 daily

      Nutra Champs Digestive enzymes 1 with each meal

      Dr Tobias Triple Strength Omega 3 2 daily

      Sleep and Restore 1x daily

      Health Concerns Isatis Cooling 1:3x daily

      The Isatis Cooling is actually bringing me out of the flare, where as the others just helped me manage it and live normally. I have only been taking it a week, but I've been on the other supplements for 3 months. It's been a life changing relief.

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    • Posted

      Hi all, hope I dont get shredded  by readers , but I am also a long standing  sufferer, never ever having taken any form of medication.. ,  First diagnosed by Lifescan in 2008 as Colitis , mild patchy,  and probably for years before. I am 72 and am very active sportswise. Recently  I was diagnosed Acute  Chronic Active Colitis after our bi-annual NHS check up for bowel cancer. So I have to see the resident Gastro Enterologist who asks me, what symptoms do you have? I said, apart from acute bleeding for three weeks four months ago, and a mild belly ache, ( due to stress at the time ) I have  had no symptoms...

      He seemed perplexed, when I told him that I have taken , daily for 22 years, the leading GMP standard USA manufactured Vitamin supplements in many formats+ wheatgrass, curcurmin,  blueberries avocado amino acids in a smoothie .

      He said,'' Vitamin Supplements are useless'',

      I said, '' You are correct, UK/ EU vitamin supplements as they only have to manufactured to Food standards, quite legally, are a waste of time and money. But the 5 or so GMP standard USA Vitamin Manufacturers who are obviously a lot lot dearer, have the products which balance your cells out much much better and allow zero inflammation plus protecting the immune system''

      As , touch wood, in my case

      He , like the majority of UK Medics is indoctrinated to handing out pills at will, in my case mesalazine ( mezavant )and a   pentasa enema.-without ever considering the benefits of natural and alternative therapies ---------Neither of which I have any intention of taking.

      Books to read are ''The Comparative Guide to Nutritional Supplements'' by Lyle Mc William, natural enema by Tyler Tolman,  and sign up for ''That vitamin movie''

      If anyone is worried about Cancer, please subscribe to '' The Truth about Cancer''.    Truly brilliant

      Hope this is of interest

       

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