Recently diagnosed and finding things difficult, any advice?

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over the past few months I have been diagnosed with ulcerative colitis following an endoscopy, mri's, ultrasounds, etc... and have since been hospitalised twice for IV treatment. I am 17 and about to take my first year Alevel exams but am finding getting to grips with my diagnosis extremely difficult.. My family are hugely supportive but I don't feel as though they fully understand how I am feeling... I am also suffering from severe sickness and stomach cramps, but my doctor thinks that this could be linked to me psychologically thinking about it too much, does anybody have any tips on how to manage the cramps and mentally 'toughen' myself up to it? I am worried about my exams and feel very alone at the moment, i really just need some help and someone to talk to who understands how i am feeling! thank you

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  • Posted

    Poor u and I mean that sincerely !It's very rough when u r so young. I hav it 25 years....diagnosed at 35 . I hav had my fair share of hospital and flare ups. A lot can b linked to diet .  It's worth keeping food diary but I will give u my things worth avoiding....fruit of all kinds not good becos of fruit sugars, avoid sugary things, eg sweets desserts cakes chocolate......I found on my last recent flare up I went on gluten free bread etc and I found that to b great benefit.... 
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  • Posted

    You might want to search out all the posts on "Patient" under "ulcerative colitis" to find dozens of posts dealing with this and you'll find many good ideas.

    I posted this a couple of months ago and might also be helpful.

    It's impossible at this point to know where this may lead.  I was 25 when I was hospitalized with UC. I was really ill with bloody diarrhea.  After a few weeks I returned to work and started reading about UC.  I learned that it could be exacerbated by stress and may be triggered by stress as well (as it was in my case.

    I read a book on relaxation techniques and practiced it regularly.  It was simple.  I'd lie down, close my eyes, and over a fifteen minute period I'd almost chant to myself "relax your toes", "relax your toes" and try to do as what I was saying.  I would move on the ankles, feet, legs, knees etc.to the tops of my heads.  In my life I'd try to avoid stressful situations with family, work and wherever possible.  Throughout the day I'd try to think of relaxing, taking deep breaths and checking to see if my stomach muscles were relaxed.

    Now I'm sure I was lucky, but I largely remained symptom free for decades, although I'd have short periods of diarrhea.

    You might want to try that.  Also it's important to take charge of you situation, become educated and involved and find a doctor (should you need one) that's sympathetic and understanding and one you feel you can talk to.  Make sure that it feels like a partnership.

    Good luck and most importantly, don't despair, but act to try to help yourself.

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  • Posted

    Sorry put that on prematurely...hit wrong button.  Got gluten free bread at tesco or asda....genius do nice loaf and it's nice toasted.yogurts and yogurt drinks not good sugar again.  Alcohol can annoy it too as does stresss.....a levels not good for it..best u can do there is yoga and meditation to try and relax and that's hard to understand at ur age unless u r a wise soul ! Tut tut re ur doc....sickness and cramps go with u c. It usually happens when it's not well controlled. U didn't say what meds u r on. I take asacol....I did try pentasa for few days couple months ago but they nearly killed me.....cramps I had with them were horrendous... Back on my asacol again.Cramps take cocodamol......1 at a time when u feel cramps coming on. Sickness may b down to wind with it. U can buy ranitidine at tesco or asda for that. It helps.  I recently started on lepicol bought internet or holland and barrett the one with pre and probiotics. and psyllium seed bought from ' just ingredients' online. 1 teaspoon of each twice a day in glass of water.....it's best left to sit in water for couple hours.It gelifies if u can tolerate swallowing it that way. I hav found my symptoms hav totally subsided from use of same. It's got to do with butyric acid processing which coloncytes( bugs that live in bowel) love. It dampens inflammation. That's bout all I can think of at present but if I can b of any further help send me a message.   Mary Jo
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    • Posted

      Firstly thank you for taking the time to reply to me, I really apprecaite it, for the first time in a long time i don't feel so alone in all of this! At the moment my doctor has put me on a low fibre diet so i'm ruling all things out like brown bread, vegetable with peels, fruits etc... The medication I am on currently is prednisilone, mesalazine (oral and sepository) and calcium suppliments. comparing m medication to what lots of other people on here have been on its very different which at first worried me because I began thinking, am I even getting the right treatment? I have tried cocodomol but that ended up either making me feel sick or backing me up in the bathroom department. Usually a hot water bottle helps but it gives me a lot of hope and i am definitley thinking more positively about the future that so many other people have it under control and are living normal lives! Thank you once again ... Amber
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    • Posted

      That treatment u r on is ok. I started off on mesalasmine but came out in rash so had to go on asacol. Re the calcium for reducing incidence of osteoporosis  whilst on steroids do read up on calcium magnesium vit k vit d .calcium is not all it's cracked up to b re osteoporosis. Yeah some people are quite sensitive to codeine. U could try paracetamol on its own if u wish.
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  • Posted

    I was your age when I was diagnosed, I'm 43 now. I know this is hard and probably sounds a bit stupid but try to think positive about it, tell yourself I have this, now I need to learn how to live with it, and this sort of forum is a good start, you are right that nobody understands unless they have it, no matter how understanding they try to be. First of all stress makes it worse, so maybe google some relaxation techniques or whatever de-stresses you, alter your diet to plain and boring, very low fibre, milk can make it worse, so can fruit and veg, although check with GP before taking, peppermint oil capsules can help cramps, and ginger is good for nausea, either tea, or nibble crystallised. Also it's ok to feel sorry for yourself and have a good cry but don't let it take over, you will certainly learn to live normally with it, my UC is an immune problem and at 36 got bowel cancer, and I now have liver problems, joint problems and have 5 autoimmune diseases but I work full time, I go on holiday etc I just get tired really easily, so don't think this will stop you living your life because It won't.  The best advice I can give is keep communicating with your Doctors, medicines come on the market all the time and if you feel yours isn't working don't be afraid to go to them and say so, there are lots of things they can try. Drink plenty of water, get loads of sleep and eat what your body is asking for and I'm sure you will sail through your exams, and explain your condition to your tutors, they may be able to help. Good luck and don't worry, you will cope with this, everything feels overwhelming when you don't know much about it, also try www.crohnsandcolitis.org.uk
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    • Posted

      Thank you for taking the time to respond to me.... I will definitely be looking at some relaxation techniques as I think they will definitely help over the next few weeks (exams start on Monday) as me and stress dont go well together! I am sorry to hear about your condition but it is so inspiring to know that all you have been through and you live a completely normal life! It gives me hope for the future!! Thank you so so much!!
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  • Posted

    Hi. I'm 17 too and was diagnose 2 weeks ago, but have been struggling with it for quite a while. I totally understand where you are coming from. Some days I just want to curl up in a ball and not go outside for a while. Truthfully, I am still struggling and haven't really found any relief. I'm trying to be on a low fiber diet (which is actUlly harder than I thought it would be.) I really hope that you find something that will make you feel better. I wish you all the best and some of these people have great advice. Good luck with school!
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  • Posted

    Hi Amber,I was diagnosed a year ago and still experimenting with diet etc. Very hard to get to grips with diagnosis I know but I find this forum very supportive. Maryjos advice very good and I also try to avoid sugary things, fatty food, sauces,onions and dairy when flaring. Probiotics help too and hot water bottle/ heat pad on tummy for pain. I also use Curaheat gel pads on tummy when out and about, seems to help. Hot bath in evening also soothing. I take one Solpedeine max when pain drives me mad! Hope some of these suggestions help you,and read about disease as much as you can,but without distressing yourself. You WILL feel better with the right meds and you can live your life pretty much normally,keep us posted x
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    • Posted

      Thank you for responding to me... I will definitely start a food diary and keep track of what triggers it but it seems a lot of people have mentioned sugary foods - a big no no from here onwards! I use a hot water bottle at the moment and it really helps but not all the time! Again thank you very much!x
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  • Posted

    Hi. I was diagnosed with Coilitis when I was 11/12 and I'm 16 now with my GCSEs starting next week. I know what you mean, your friends are family are all supportive but never truly know what you're really going through and how you're really feeling. I found it hard when I was first diagnosed too and I do think there is a psychological link to it, especially stress. I only seem to be on a flare whenever I'm stressed, so do whatever you can to make your life easier and stress-free. One thing I will say though is don't let this take over your life. It will only make you feel worse. Accept that you have it and fight against it and stay positive. I'm here if you want to talk and good luck in your A levels, I'm sure you'll do great!
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    • Posted

      Thank you for responding! It seems recently that my worst phases are when I am stressed or worried so I'm trying to keep calm about exams - probably too chilled out for them for my own good haha! Thank you very much it means a lot! Good luck for your exams next week!! 
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