Crohn's Disease Forum » Your Story » Healthy?! So confused now

03-29-2013, 09:09 AM   #1
Join Date: Mar 2013
Location: Reading, United Kingdom

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Healthy?! So confused now

This isn't easy to sum up, it's been gone on for a while now and I've tried so hard to be positive that I think I've tripped myself up at times.

I'm in my early 40's, a part time fitness instructor and would have said I was in the best shape ever a couple of years ago, migraines gone and periods regular with the firness stuff.

Last January I went gluten free (parent with coeliac disease so it seemed sensible), for a month things seemed better, and the bad days... well I put those down to the mistakes I made in trying out GF diet. I get really desperate urgency for the toilet and well, things change on a day to day and week to week basis so it's difficult to pin down what I'm eating that's wrong. Most noticeable tho was my change in sleeping habits, I actually started waking up in the mornings so decided to stick with GF.

GP did bloods, I'm not Coeliac. Another GP put me on codeine for diarrhoea which actually gave me diorrhoea after a few weeks and the worse water infection ever (3 courses of antibiotics to clear). By the time I saw a consultant I was taking loperamide regularly, he was happy this was working for me and I'd lost about half a stone so he was happy to leave it there as I felt things had stabilised and he was happy IBS was under control.

Then things got worse again and I lost more weight, another GP gave me mebeverine as I'd never been given anything for IBS - in my little hissy fit at the bad weight loss I reintroduced gluten, I only took 2 of those tablets - VERY bad day at work the next day It was so quick that I think it was the mebeverine, I've tried gluten again since with nowhere near the same impact.

I was referred back to hospital and they agreed Colonoscopy was needed, he also agreed I should take amitriptyline. The doctor that did the colonoscopy wrote crohns disease as I had an imflammed ulcerated terminal ileum, he was very reassuring in that it was nothing they couldn't sort out. I was actually deliriously happy at the idea I might get steroids and regain my weight, I think I was just so happy to have an answer at last.

I saw the consultant again and he wouldn't refer me to a nutritionalist or medicate me - my blood tests are so good and healthy!!! He referred me for an MRI on my small bowel but was insistent that it must be IBS. The MRI was apparently fine although it has thrown up some issues with my kidneys/bladder so he's referred me on that My next appointment with him is in July!!!!

In the meantime, I've just had a full MRI on my spine as I'm struggling to walk, I'm waiting results on that now That probably scares me most in terms of falling over when trying to get to the loo

I feel SO frustrated right now, I've tried speaking to the consultants secretary and she says he doesn't feel I need any more tests. I really don't know what to do right now. I've booked an appointment with my GP to see if at least I can get an 'assisted' diet as my weight is my main concern. I am trying so hard to be positive right now but it's really hard.
03-29-2013, 11:14 AM   #2
SarahBear's Avatar
Join Date: May 2012
Location: Charleston, West Virginia

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Hi, nindancer!

I'm a little confused. So, your colonoscopy indicated Crohn's but you weren't actually diagnosed? Do you know if biopsies were taken during the colonoscopy, and if so, what the results were?

Was the doctor who ordered the MRI the same one who did the colonoscopy? If not, has he seen the records of the colonoscopy?

Would you mind listing all your symptoms?

Were you tested for Celiac's while you were eating gluten free? Are you still gluten free? If you were eating gluten free at the time of the test, you may have gotten a false negative because of that. For accurate results, you need to be regularly eating gluten for four weeks prior to the test.

I hope things get better for you soon!

Diagnosed with Crohn's disease 12/6/08.
Have taken: Prednisone, 6mp, methotrexate, Pentasa.
Currently waiting for a new medication!

Check out the Crohn's forum chat!

03-30-2013, 10:59 AM   #3
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Greetings and welcome to the community. I'm so sorry to hear of your struggles

When they did the colonoscopy, did they also perform biopsies? And if so, what were the results of those biopsies?

All my best to you.
It's good to be back
04-02-2013, 06:12 AM   #4
Join Date: Mar 2013
Location: Reading, United Kingdom

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Thanks for your replies SarahBear and David.
The consultant did have the biopsy results when I saw him but he didn't comment on them so I take it that they were normal. That's why I'm so baffled as surely the fact there were ulcers there can't be ignored?!
The initial blood tests were shortly after I'd cut the gluten but my G said that didn't matter - hmm, funnily enough that's something I dod know more about than my GP! However, even after cutting out gluten I still have trouble getting to the toilet on time so I may have gluten sensitivity but I don't think I have CD.

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