Crohns

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Hello 

I am 27 years old I was diagnosed with Crohn's disease back in May 2015 have been on steriods now for 9 months now but pain does not seem to be going does anyone else have this same problem and any suggestions you guys could help me with? 

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  • Posted

    Dear Kelly. My pain never went until my GP prescribed fentynal patches but now I have had a resection so I am working hard to get off the opiate drug.  I may have thought twice about using them if I had realised how hard to come off.

     

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  • Posted

    Hi Kelly your situation is very similar to mine I was diagnosed in April 2015 and have just had a resection on new years day,I was also on steroids and still in agony with pain can I ask if you've had an MRI scan and a Colonoscopy done cos that's when the wheels really started for me after them tests but had been left too long due to two years of misdiagnosis so my small bowel was to far gone for any other treatment I think the steroids are just prescribed to try and prevent more damage but stopped them asap when results came back as they wasn't anything apart from surgery that could help me,as for the pain don't sit with it like I use to all I was told for the pain was take paracetamol but didn't help me so I'd take cocodamol but they can constipate you but it was me in pain not my docs I also use to put a freezer block like you use in cool boxes or cool bags in a pillowcase and freeze my tummy where the pain was and that helped me through the night,I really hope you get sorted soon but don't sit in pain get back to your docs and tell them you need some relief and paracetamol not working and push for them results so not left too long like mine where left two years with misdiagnosis then third year diagnosed with Chrons but left too long and damage had been done,love to hear how your doing in the future so keep in touch if need to talk.Jane.....😘
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    • Posted

      Hi. Let me know how you get on I am a month in front of you with a resection 2 nd Dec. Like you 5 years in pain and only moved after MRI and colonoscopy. Had a stricture and 20 cm small bowel removed but it is taking a long while to gain strength.  I felt better immediately after the op but still losing weight and small amount of discomfort.  It may be my age?
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    • Posted

      Hiya Sheila I am really pleased you replied yes same as you really still feeling weak and only taking Tramadol for pain,I had structures and was told by my specialist he thought they would take 3ft but when met my surgeon he said about 2 but noone came to see me before I left hospital so still no wiser,I wanted to ask is this it now as I've been told I can eat everything I want now but I'm not sure I don't want to risk any further damages and the pain has been intense and do you know if we go on any sort of medication I'm due in my Chrons clinic I was told in 6 weeks time to know more but just been confused by my diet and as same as you still in discomfort.Jane...🙋
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    • Posted

      Hi. I have had Crohn's for 28 years and had 8 surgeries which gave left me with only 1.5m of small bowel and even that isn't in great condition, have had ileostomy since I was 20yo. Even though you have had surgery to remove the narrowed section of bowel which will allow you to eat easier this doesn't stop the Crohn''s disease itself and so you should be on some sort of maintainence meds but far too many GI doctors don't bother and so it can go round in a vicious circle. Research the options yourself, ask for scan and also fecal protectin test (think that is what it's called) which will show any active disease areas are still there. The surgery in itself will only remove that diseased area of bowel and the stricture area not get rid of the disease altogether.

      Best wishes for your recoveries and learn everything you can about Crohn''s, but beware the 'snake oil/miracle diet' websites. There are food regimes that are medically proven to help like FODMAP which can reduce stress on bowel when flaring but no one regime/meds works for everyone so it is a case of trial and error sometimes.

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    • Posted

      Hiya Stick insect,Thanx for answering my question I thought I should be on some sort of meds I was told when left hospital a couple of days ago that I can go back and eat anything and everything now but I'm not sure I wanna risk doing that,I've started following a healthy diet and swapping my snacking for a healthy shake,I didn't eat anything with skins on before my op and that's really all I was told not to eat anything which had a skin I could eat the item but skinning it first I was told I've heard the Paleo diet is OK but when I've read about it its almost everything I eat anyways,my older sister has IBS and she goes to different doctors to me and controls her IBS with her diet but she doesn't eat nuts,diary etc as was advised by her doctor but I've got Chrons and been told nothing like that so I'm very confused,I would love to hear if anyone or yourself have been advised on your diet or your same as me clueless,thanx again Jane....🙋
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