Symptoms

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Hi, I have posted on here once and was very grateful for the replies. I never seem to be able to be of any help to others but think it's so helpful when people share their experiences. I have had colitis for years with no symptoms, recently got diagnosed with crohns. colonoscopy and biopsies have come back relatively normal, but I am feeling worse and worse- I'm not sure if my symptoms are crohns or something else. I'm waiting for mri scan of small bowel, but getting to stage where just don't want to eat. I Have continual lower back pain, cramps, bloated, I used to be regular with fairly loose mucus stool every morning and some during the day but now feel like I'm

Constipated. My stomach feels hypersensitive. Does anyone else have similar symptoms or does it seem unlike crohns. I know people suffer from

Worse symptoms- I have 2 young children and am struggling. Also has anyone tried a fodmap diet or gluten free diet. I'd be grateful for any advice. Karen

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16 Replies

  • Posted

    Hi I have crohns and have same symptoms as you for the last 2 months. I am also awaiting an mri but mine is to see if these symptoms are due to strictures or fistures. I also have 2 young children so I understand how hard life can be when having a bad day with these awful symptoms. I am also having unexplained weight loss too which is worrying but I'm hoping mri reveals some answers. Good luck and I hope you get some answers too.

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    • Posted

      Thank you so much for your reply. It really does help to talk to other people and know it isn't in my head. I really hope you get some answers too, have you chased up your mri scan. I've had to chase all my hosp appts as they keep getting missed off ( although the ibd nurses are great). Fingers crossed for us.

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    • Posted

      I have to have mri on 7th December but on cancellation list but I will be chasing results like mad afterwards as I dont want to feel like this over Xmas with my boys. My ibd nurse is useless she just refers me to my gp all the time. Hopefully yours may be able to get you some answers soon. Good luck xx
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    • Posted

      Hi, hope you had a good Christmas and didn't feel too bad. I just wondered if you had your scan and if you got any results? ( I felt a bit rubbish- but the kids enjoyed it) Karen

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    • Posted

      Hi had a bit of a hectic month but Xmas was good. Hope you had a good Xmas and new year. Had mri and it came back as no change but diagnosed with water around my gallbladder which Dr hasn't acted on yet as I was admitted to hospital the week before Xmas with high ketones and blood sugars. Hospital diagnosed me with steroid induced diabetes which explains a lot of my symptoms and weight loss.

      I have been put on a temporary insulin while my antibodies are tested which takes 6 weeks and then Dr's have to come up with a health plan but it looks like I will be some kind of diabetic. Waiting on dietician appointment now as I can't eat diabetic diet as it will cause a flair with my crohns.

      Have you managed to get any more answers???

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    • Posted

      Dear me, that all sounds pretty horrendous! Had you been taking steroids for a long time then? I know they can do that- have you stopped them now? Difficult to work out a diet I'm sure, but cutting out sugar should help and wouldn't affect your crohns would it? Harder with the carbohydrates and fruit and veg stuff. I have a ct scan on 16th. The consultant said he thinks ct scan shows more then mri. Guess will wait and see. Hope they get you sorted soon, you must be feeling pretty fed up. x

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  • Posted

    Hi there, so very sorry to hear about your illness.  I was diagnosed with Crohns 3 years ago and it resulted in emergency surgery.  My advice to you is to push for the scan a.s.a.p. so that they can find out what's wrong and then will be able to treat you, it can be treated so that you will be able to lead a normal life.  Unfortunately, I was afraid and left it too long and last year spent 8 months in hospital which has resulted in me only having 12" of bowel left and also having to be fed by a drip 6 nights a week.  BUT, I have adapted my life around it and am grateful to be alive.  If caught in time, medication should do the trick for you.  Fingers crossed and I am thinking about you.  x

     

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  • Posted

    Hi Karen

    My bowel habits took a distinct dive to liquid in December of 2010...December of 2011 I was hospitalized for a different reason and I was also recovering from a serious multiple fractures of my leg.. the nurse was convinced that I was addled because I would ask for assistance to the restroom, she would respond, you just went.. I would smile and say, I need to go again. She got fed up and declared, this is not normal. An emergency colonoscopy showed a bowel inflammation. It took some special blood tests sent to an out of state laboratory to determine that I have Crohn's.

    After discussing matters with my gastroenterologist, we were able to determine that I had developed a milder case of Crohn's about 2005 ish.

    So today...I take Budesonide 3 mg three times per day...this is a steroid. I also take 3 x 750 mg of Balsalazide three times per day...took a while to become effective.

    Today, I prefer to be loose because loose does not give me abdominal cramps. So I eat no lettuce salad and every couple of days I have some macaroni and cheese, or bread, or rice, or potato to firm things up just a wee bit. I am so used to eating this way now that it seems quite natural. I find that thermally hot foods will rush through my gastrointestinal tract so I eat them when I am at home. Spicy hot foods also rush things through and they can burn the anus on exit. So I limit both the frequency and the quantity of spicy foods.

    I have a friend who likes gluten free, prefers gluten free. For myself, gluten free is a sacrifice without benefit.

    Karen, you will need to use trial and error...a food diary will help you learn what works for you and what doesn't work for you. I still eat out but I will never eat what I know runs right through me...nice excuse to enjoy the freshly baked bread and a luscious twice baked potato.

    And something else I learned...it is properly termed, Crohn's Colitis.

    Kind regards

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  • Posted

    Hi, I am experiencing almost exact symptoms as you! I have had an mri of my small bowel and it came back with a thick wall. Doctors are at a dead end as i have all the symptoms of crohns but my blood test results say i'm perfectly heathy, although i know i am not. I hope you get better answers that i am getting! x

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    • Posted

      Hi, have you had other tests done like the endoscopy where you swallow a camera to have a look? I've got an appt with consultant to get him to dr mri( which should have been arranged weeks ago ) but dont have much confidence. Are you taking anything? I've tried symptom relievers but they don't do anything, and I don't really want to take them, I just want to know what's going on! My blood tests results were ok too. But like you I just know I'm not right. 6 months ago I had endless energy, worked 10 hour days, played sport and looked after the kids, and I feel like a shadow of myself. I do hope you get some answers too. It's hard to explain it to the consultants isn't it. X

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  • Posted

    This sounds like chrones I have had it for 6 yrs now I get lower back pain all the time and right sided pain where your small bowel goes into your large bowel. I have taken numerous meds for chrones over the six yrs still waiting for one to stop all this pain I get. It gets me down stops me from doing my job in health care makes md really tired. I would go back yo doctors x
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  • Posted

    So today I can't stop shaking, I've passed several stools but not loose and one was partly chalky white. ( I've got scan next week). I think this is all to do with the crohns/ colitis but any advice? Doesn't seem much point going to gp. Am managing to eat but feel uncomfortable

    . Many thanks - I've done this as a reply coz I'm not quite sure what to do on here!

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  • Posted

    I don't know if this is much help but I'm 19, have had crohns for ten years now and have most of those symptoms every day. I'm now on methotrexate which is higher up on the medication list and still having problems, going for an MRI next month. Have had 5 mris, scopes etc but they can't figure anything out it seems. I believe it is crohns as I have the same problems as well. Hope that helps a bit.

    Also, are you avoiding certain trigger foods?

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    • Posted

      Hi kayla, thank you for that, it was helpful. I feel like Drs just think I am making it up or it is in my head. But I know my own body! You done it tough by the sounds of it!

      Re methotrexate, there's no actual interaction with alcohol, you should be having regular blood tests so you could always ask the people that do the tests. Or make sure you are due a test soon before you try drinking then they will be able to see if there are any effects.

      I don't really know if I have any trigger foods, I've tried avoiding various things ( though not very well!) but nothing really seems to make any difference and I have some good days and suddenly think I am back to normal!

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    • Posted

      I've been going for bloodwork to make sure the methotrexate isn't wrecking my liver or anything. So far so good. And yeah I've been finding out lately that some foods are no good at all for me. I'll be really good one day and then eat one thing and feel sick for a few days! I don't remember the last time I ate corn or spicy food for this reason lol. It's just the abdominal pain that sucks the most!

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